Wow, it has been quite some time since I had a chance to visit. I think I mentioned the last time that I was expecting some travel for work, but thought things might settle down some. Well, so much for my prediction.
Things have been really busy at work and at home. DH did finally finish working on the yard and the sitting area. I have to admit he did do an excellent job on both. We live on a main street through our town and many people I work with and others that I know from my work in the community know my house. So the ongoing work was on display throughout. Everyone says we have one of the nicest yards on our street now. The older neighbors behind us told DH that the yard has never looked better. We've really enjoyed sitting outside on our patio sitting area and watching people in the park across the street.
About a week after he finished the yard, he decided to organize the garage which had not been touched since we moved in 3 years ago! I guess he finally got frustrated at not being able to find anything. So he pulled everything out of the garage and put it on the driveway for about a week! It looked like a perpetual yard sale! He repaired and painted the floor and the walls and then we spent the entire 4th of July holiday weekend going through boxes and sorting through things we had forgotten we had. Oh, and we spent a lot of time telling people that we were NOT having a yard sale! Now we have a beautifully organized garage that we can actually FIND things in.
I can't remember if I shared that both the town where I live, Rolla, and the town where my facility is located, St. James have been selected to be "host" cities for Tour of Missouri, a professional bicycling race featuring some of the same cyclists who were in Tour de France and who will be in the Olympics. Well, this has added a new twist to my already busy tenure as the SJ Chamber of Commerce President. We were asked the week after July 4th to host the state Lieutenant Governor on July 28 to promote the Tour. So myself and our COC coordinator and a group of others kicked into high gear to put together a luncheon and silent auction fundraiser. It came off quite successfully with over 40 items donated for the auction and over 100 people in attendance to hear the LtGov speak about the positive impact of the Tour. We raised over $3000 during the hour and half event!
Tour of Missouri is scheduled for September 8-14. One of the stages will end in Rolla on the evening of September 11 and the next stage starts in St. James on September 12 at 2 p.m. If you get a chance to see any coverage, you'll get to see what a great little town we have in St. James. We are located in the Ozark Highlands in the heart of Missouri Wine Country. They expect between 7000 and 10,000 visitors in our area for the race. Over 368,000 spectators saw at least a part of the race last year. We're all pretty excited.
Anyway, I saw my urologist on July 21 for a follow-up to my VVF repair. He gave me a full release and has declared me fully healed. I have to say that a year ago, I wasn't sure that would ever happen. I can honestly say that I'm glad that chapter of my life is over. I feel really good and now just wish I could drop a few pounds. The girls at the office and I are going to start a weight loss program and see if we can lose some weight in the next few weeks. We'll see how it goes!
August is looking like it's going to be busy. My nephew will be 18 on the 25th and I'm not going to be able to get home for his birthday because I have to be at a convention all week and my boss somehow roped me into beingon the convention committee, so I'll have some added responsibilities. He graduated in May and has changed his mind about the military. He is now working for my dad's company in the warehouse and will be starting their electrician appenticeship program after he completes his 90-day orientation. He wants to get a tattoo for his 18th birthday. Not sure how I feel about that, but then, I'm not his mom. I know his dad hates the idea. His mom, my sister, is ok with it, especially since his dad (her ex) hates it. She has a small tattoo herself. I told him to just make sure it's something tasteful and not to get anyone's name tattooed on his arm - especially a girl's!
Hope everyone's summer has been enjoyable. I know it's been steamy hot here in my part of the midwest. The AC is running is top form to beat the heat. My soapbox has been taking care of the elderly during the hot weather. They don't feel heat like we do and have a tendency to turn off the AC and they can dehydrate much more easily than younger folks. If you have older relatives or neighbors, please check on them and encourage them to keep their AC on low cool and to drink plenty of fluids. My residents at the facility have been known to turn off their AC and turn on the heater even when it's 95 outside! We have to be ever vigilant to keep them cool. We also use alot of those frozen popsicles - the ones in the long tubes. They are a good way to help residents stay hydrated when they won't always drink water. They like the treat!
Take care and enjoy the rest of the summer. I can't believe some of the schools around here start back on August 12! Doesn't that seem REALLY early?
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Rain, rain, go AWAY!
06-16-2008 - 08:09 PM
I know many of you have been dealing with flooding and more flooding. While we aren't having huge problems here in our part of Missouri, we are having rain virtually every day! I'm sure like others, I'm really tired of it! The flooding is so devastating and destructive. Hope all of you are safe and dry.
I just returned from our NY trip and we had our award celebration at work. Things should be calmer at work for the next few months, except we have a number of meetings and trainings we have to attend. With gas prices so high, I really wish they'd come up with some other way for us to do training. We do a lot of conference calls with "go to meeting" web training sessions. But I guess that's not enough. I think we're going to be having at least one travel meeting in June and July and possibly 2 in August.
DH has been working on our yard for the last 3 weeks in between rain days. We finally came up with an idea for our front area - we're creating a sitting area/patio/rock bed beside our front porch with beds on either side of the porch area. This area is about 8 feet by 10 feet, so it should make a nice area for chairs and a small table and it's shaded most of the time in the evenings. It's coming along nicely - except he has to keep stopping for rain delay!
Hope you are all staying dry and I'm hoping that all this rain doesn't increase the mosquito population this summer from all the moisture. I absolutely detest those things!
Wishing you all sunshine,
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So long gone. . .
05-03-2008 - 08:38 PM
My, has it been so long since I've visited? I guess it has. Things continue to be very, very busy at work and with my aunt and my life in general.
Health-wise, things are good. I continue to be dry! YEA!!!! That is the greatest thing you can possibly imagine after leaking for almost 9 months. I feel good but I'm really out of shape. I've started a walking regimen to try to get in better shape and hopefully lose a few pounds! DH is walking with me most days, but I think he's even more out of shape and physically "unfit" than I am! Anyway, I do feel better and hope to continue.
Let's see, where to begin:
My aunt: She is doing much better. She is living with my sister at the moment while they get the house repaired. After being in the hospital for about 2 weeks, she has recovered from her fall injuries and has her pain under control. I went to Arkansas (where my entire family lives except me!) in mid-March and we got her into Social Security for disability application and so forth. We have spoken with an attorney and sent correspondence to the sister-in-law and since she hasn't bothered to respond, we are pursing prosecution. I think she'll respond when she is formally arrested on charges of theft and exploitation of a vulnerable adult - especially since she is a nurse and could lose her license if she is convicted!
Work: After a horrible month in February due to the flu epidemic that I thought was never-ending, we have recovered and things are really good. We are getting ready for the busiest 6 weeks in the nursing home year. We have National Nurses' Week May 6-12 (don't forget to say thanks to your favorite nurse!); National Nursing Home Week May 11-17; then National CNA Appreciation Week the second week of June! As you will recall, we go all out for these celebrations - especially NNH week. This year, we have even more excitement. In late February, I found out that our facility was selected as one of the top 10% of facilities in our company for outstanding customer service, quality care and overall performance excellence. We're receiving an award - the 14 Karat Award which means some really great perks for my staff and awesome recognition for our facility. Only 35 facilities in our company receive this award and 3 are in Missouri! Isn't that cool? Anyway, all my staff gets a cash bonus of at least $100 each; department managers get $200; and my Director of Nursing and I get $1000! We also got money to throw a celebration for the staff, so I've been busy planning this event which will be June 13. Lots of big wigs, awards ceremony, dinner and then the big celebration with a DJ and dancing. I expect to be exhausted!
Life in General: Where do I start? Let's see. I'm headed back to Arkansas in a couple of weeks to do some follow-up on the aunt situation - attorney meeting, etc. But the real reason I'm going is to attend my nephew's high school graduation. I cannot believe that he's graduating. Seems like yesterday that he was 13 and coming to spend a week or so with us in the summers and going to see the Cardinals play and convincing me to go up in the St. Louis Arch (I'm not keen on heights). Now, he's graduating and has committed to the Army. While that terrifies me given the current military situation, I'm still very proud of him. Despite his parents divorce when he was 6 and his dad getting primary custody and being a complete, mentally controlling jerk, he's turned out to be a really good person. (My sister's ex accused her of being a druggie (she wasn't then and certainly isn't now!) and the fact that she only had a PT job at the time she left a mentally and escalating to physically abusive situation, the judge granted the ex (a registered nurse with a good job) primary custody of their son.) Anyway, how many high school seniors would choose to spend a Friday night with his G (my mom) and Pap-paw rather than his buddies? So, I'm pretty proud of him.
Then the first week of June, I'm taking a week of vacation time to take my niece to New York. Part of my compensation package involves an annual incentive plan. For some of the same reasons we got the 14K award at work, I have the opportunity each year to receive a financial incentive but I don't budget this or plan to get it ever. But, this year was an unexpectedly very good year and I got the bonus, as did my DNS. So, we're going to New York.
About 4 years ago, my then 7 year old niece decided she wanted me to take her to New York - I have no idea why. I put her off by telling her we'd go when she was older and I thought she'd change her mind as she got older. As you know, 2007 was not a great year for travel with all my surgeries and physician visits and I used the annual windfall to pay medical bills last year. Well, she's never changed her mind! So, since I had funds that were extra, I decided not only to take the niece but my mom and my sister as well. I got a great deal on the flight, the hotel and a rental car (before gas prices shot up). It should be fun. I've been to NY before, but my mom and sister haven't. Amazingly, we got a better airfare from Little Rock than from StL - about $600 less! So, I'm driving back to LR on June 2 and we leave for LR on June 3.
But all is not good news. My car that we bought new in 1999 is on it's last leg. After having a couple of mechanics look it over, it appears that the tranmission is virtually shot. The cost for the repair is around $2100!!!! The car is worth about $2400. Of course a transmission is one of those things that even when you fix it, there are no guarantees that the repair will sustain the vehicle. I was hoping to hold out on buying a car until they had perfected or at least improved hybrid technology. No such luck. So DH and I spent the day looking at cars - an activity I detest. It's going to pinch the regular budget, but we can afford a new vehicle. I just sort of liked not having a car payment! I'm also thinking about re-financing our house for a lower interest rate. There are some good opportunities through our company benefits program, so I'll be checking into those, although I spoke with a local banker and the deal she had was about 30% lower than our payment now!
Our spring has been really wet, really windy and really chilly here in Missouri. Hope yours has been more spring-like! Take care and enjoy each day.
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Long time gone . . .
02-26-2008 - 07:52 PM
Well it certainly feels like I've been gone forever from the site. My life is absolutely crazy at the moment and I'm struggling to find time for anything. I actually left everything at work when I left at 6:15 p.m. tonight - so I'm taking a break. Let's see, I should catch everyone up on the saga.
I saw Dr. B on Jan. 23 for a surgical follow up from the VVF repair in September. So far, so good - still no leak! He's really pleased with my progress at this point. I told him I am "lop-sided." My tummy is still very poofy and it appears to be more so on the right side. He said not to worry. This swelling will go down as I continue to heal. I certainly hope so. I go back in July - that 6 months - and I'm not sure I know how to react. I feel as though I've been going to the doctor almost non-stop since January 2007. So things are going along pretty well and I'm feeling pretty good. And then I get the LETTER.
Dr. H, my gynecolgist is closing his practice in town. This is very distressing. His letter indicated that there were some family concerns, but my friend (my Director of Nursing) who had her surgery in November said that he mentioned some concerns with scheduling at the local hospital. She also had to pay her insurance deductible BEFORE he could do her surgery because the hospital required it! Anyway, obviously some issues there. He is moving to a town that is about 2 hours away. I figure I can drive 2 hours to see Dr. B in St. Louis. So I called and told his office person to pack my records for the move! I'll be going to see him at his new digs in Springfield. You know when you find a doc you like and one whom you are comfortable with and who knows you and your history - it's hard to just change. So I stopped the self-induced panic attack. My DON and I may be making our appointments together and carpooling! Wouldn't that make for interesting conversation on the trip back! I lived in Springfield in the late 1980's and early 1990's, so I'm really familiar with the area and where he'll be working.
Work is good - very busy. We're exploring the addition of a new clinic to our facility for dialysis services and this could be a REALLY big project for 2008 - around $2 million! That's a lot of $$$$. February has been awful, however, as we have been under quarantine for the flu - despite 99% of our residents taking the flu vaccine. We have been quarantined since Feb. 8 and just released it Monday! It has wreaked havoc on my census with 11 deaths since the end of January - some from complications of the flu. It's very frustrating when our residents are so sick and miserable. They are just so fragile and we feel so helpless to make them feel better. This flu has been devastating to everyone, including a number of staff.
Last week I had to go to Kansas City on Monday - a 4.5 hour drive - for a meeting on Tuesday from 8:30-4:30. Then we all had to drive to Branson - a 4.5 hour drive - for meetings all day on Wednesay and Thursday. I know - that's nuts. The Wed-Thurs thing was planned after we had to cancel our Christmas party/meeting in December due to weather. The Tuesday meeting was planned by our new division VP and she was not willing to change or move the meeting to Branson - hence all the driving. And if that wasn't bad enough, we got iced in at Branson. Now that might not been so bad, except NOTHING is really open in the winter there. In fact, there was only one restaurant open besides our hotel restaurant! We were able to get home on Friday. Thank goodness for my laptop or I would have had 100 or more emails.
Then of course there is the family crisis. I have an aunt who has been an alcoholic since she was 18 years old - she's now 53. About 15 years ago, she and her then live-in boyfriend moved into my grandmother's home with their 2 large dogs and completely took over. The BF worked 3-11 and they got my grandma onto their weird schedule, so my sister and I had difficulty seeing her or contacting her - up all night, sleep all day, etc. My sister and I discovered when my grandma died that my aunt had the will changed and had actually already made a pretty good dent in the funds. We made a decision that we did not want to be closely associated with this aunt because neither of us agreed with her alcoholic, destructive lifestyle. We kept in contact (mostly my sis who lives in Arkansas), but really didn't see her or associate with her regularly. In September, the BF (now her husband) died. My sis and I talked and she tried to call - the phone was disconnected. She stopped by - no vehicles. She knocked no answer. When I was home in December, I stopped a couple of times, knocked, no answer. We assumed that she was with her husband's family - a sister-in-law who lived nearby.
Well, about 3 weeks ago, my sister's best friend received a call from our aunt asking her to bring her cigarettes. She went to the house and found her lying in bed in her own excrement, unable to walk or get herself out of bed. She had fallen a week or so before. So my sis took her to her home and finally after a week dealing with her extreme pain and incontinence, she spoke with the adult protective service worker and they told her to get our aunt admitted to the hospital. She had multiple fractures of her tailbone and 2 compression fractures of 2 discs and yes, she was in extreme pain and couldn't take care of herself. She had fallen two years ago and did a number on her right shoulder and the surgeon botched the repair, so she has no use of her right arm. She's a mess. No food in the house, horrible living conditions and shutoff notices for every utility. Anyway, come to find out, the sister-in-law was "taking care" of her. Right. The milk in the fridge had a January 15 expiration date! She has sold 2 vehicles, 2 motorcycles, a boat, furniture and a rent house that belonged to my aunt and her husband. My grandmother's jewelry is missing and according to my aunt she took it, along with her own wedding rings. When the husband died, my aunt was in the hospital for a seizure and the sister-in-law planned and executed the funeral service and would not tell my aunt when or where. Yes, she's an alcoholic but she is still a human being and certainly deserves to have closure for her husband's loss. Long story, not so short, it appears that this woman, a registered nurse, by the way, left my aunt to die. We got a new power of attorney and my sister checked with the bank. She has made herself executor of the will. When my sister spoke with the bank, they asked her if my aunt was dead!!!! So, my sister is dealing with the hands-on care, hospitals and such. I'm making calls to social security, adult protective, attorneys. My sis met the police at the house and they are in the process of pursuing criminal charges for abandonment and neglect. As my sis says, the house is so bad "the roaches don't even want to be there." That's beyond bad. Now, I have to take an unplanned trip to Arkansas to meet with Social Security and get her disability application done, meet with our attorney, etc. What a complete mess, huh?
That's just the tip of the iceberg on this situation. But enough of that. I'm ready for spring and tired of ice and snow! It feels like we've been in the deep freeze forever! I know it will get better soon. March is just around the corner, right? This weekend, I will have a totally new experience - Opening Day of Trout Season! I'm not an outdoorsy person and I don't fish! But I am the Chamber of Commerce president and I have to be involved all sorts of new and exciting ventures - HA! I hope to be more active and stay in touch through the journal. I've found over this last year that journaling is a great way to cleanse and clear my mind. Sorry for the great saga and all my problems. Have a grreat week!
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01-17-2008 - 08:29 PM
Hello everyone. I'm taking a little break from some work to check email, check the forums and make this entry. Today, January 17, is the one year anniversary of my TAH. I have done some reflecting over the past few weeks as this was approaching. I spent a week with my family in Arkansas over the holidays - my first trip since my surgery. It was so awesome to see how my niece and both nephews have changed. My family is good although we still have great sadness because of the loss of my youngest brother in 2005. He died instantly of a heart attack on March 18 - 9 days before his 32nd birthday. That loss irrevocably changed all our lives and has been devastating. My niece and nephew were 8 and 5. Anyway, the visit was good for me - I really needed to get away and have a normal week.
As I said, I've been doing a lot of thinking. I am so glad I had the hysterectomy. I have had a year free of pain, cramping, heavy bleeding and mood swings. I feel physically and mentally great. I know now that I would have likely developed the fistula regardless of the original surgery given that the holes were already in the bladder prior to the TAH. So in a very real sense, I can be thankful that I had warning. Can you imagine standing up one day, not knowing there was anything going on inside, and having urine pour from your vagina? I keep asking myself how I would responded to developing a fistula if I hadn't had the opportunity to learn what it was and what needed to be done? I think it would have been very scary. As it was, the doctors were very helpful and told me it was a possibility - even though I had hoped it wouldn't happen. I see my surgeon on Jan. 23 and hope to have a full release. I won't know what to do when I don't have to have regular doctor's appointments!
One year. Wow. This time last year, it was a deep freeze here in Rolla and much of the midwest. I spent 3 days in a hotel because we had no power at our house. My nursing home was without power as well. The NH got power back on Monday; my home power came back on Tuesday and I had surgery on Wednesday. I'm happy to say that so far, 2008 is faring better in the ice department. We've been very fortunate and haven't had any so far, just a bit before Christmas.
Overall, 2007 wasn't such a bad year. I had some set backs, but I'm a stronger person for having gone through the things I did. So now, on to 2008. DH is determined to lose weight and get in shape. I've lost about 30 pounds since the surgeries, but I'm REALLY out of shape. As soon as Dr. B gives me the go ahead, I'm planning to start doing sit ups or something. (I couldn't keep up with the 11 year old at the mall and I'm not THAT old!) We're looking at options for either a treadmill or an exercise bike so we can both feel better. The problem with DH and dieting is that he is a "grazer" - he snacks ALL day. And he doesn't like "diet" food - no vegies, no low fat meat, etc. He eats starch, starch and starch - bread, rice, potatoes, and he loves chocolate! So we'll be struggling with this project in 2008. He is determined. He was a great support to me in 2007, so I'm going to be there for him in this.
Well, guess I better get back to work. I've got an early meeting in the morning at 7 a.m., so I'm going to get to bed early tonight. Hope everyone had a great holiday and is getting a wonderful start to 2008.
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12-12-2007 - 09:19 PM
Hello everyone. Just took a few minutes to read some journals and read your comments to my last entry. Thanks for all your kind words. You have all be so wonderful and supportive. I'm supposed to be in a hotel in Branson right now; however, our meeting was cancelled because of the ice storm. Unlike last January, we did not have any problems, just some light icing in trees. However, some of my colleagues were hit much harder. My boss just felt that everyone's time and energy were better served staying close to our homes and our facilities. We had one administrator who lost power and it still isn't fixed so she is staying in a hotel with her 5 children! Another administrator had a tree come through her roof. We were really fortunate in our area this time around. In January, we were without power for 4 days! I hope those of you in the Midwest and other areas in the Ice Zone are doing ok. Anyway, just wanted to say hello. I'm winding down with an episode of "Scrubs" before turning in. I have to be up early to do my radio spot in the morning. I'm a regular celebrity! (HA!) We advertise on a local radio station that does what they call an "ad lib" where the business person does a 3 minute "visit" with the hosts on a weekly basis. It's like we're just talking so it doesn't sound like an ad. It's kind of fun. Have a great week.
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Count your blessings. . .
12-07-2007 - 10:27 PM
I've been counting my blessings the past few weeks and frankly couldn't let this very special season pass without counting the Hystersisters among my very special blessings. I don't know what I would have done this past year without all of you to share my experience, my frustration, my fear and my angst over what was happening to me. Thank you all so much. I know I've used this space as a therapeutic exercise more than an area to "get to know" all of you and share the day to day events of my life. But you all and this site have been a blessing to me just knowing that you were here and you would leave me a few words in the comments section when I wrote a journal entry. Validation is everything - and when you're feeling very vulnerable and scared, but trying to keep a positive attitude, those words meant everything. And I hope these will be taken with the sincerity with which they are written - Thank You. For taking the time to comment and for just being there. Sometimes, reading your journals made my day brighter and things seem more normal and there were days I just needed to know someone was getting on with their normal life when mine seemed to be spinning down a never-ending path out of my control.
As I may have mentioned in an earlier entry, I saw the urologist on October 22 and the report was excellent. He scheduled my next follow up appointment for late January. However, he did change the anticholinergic medication to Enablex XR from Ditropan. The only minor problem I've encountered since the 9/11 surgery was some minor drips. I called Dr. B, my urologic surgeon, with this concern. He called me back the same day, changed my med back to the Ditropan three times a day and I've had no problems. I still have some urgency, but he assures me that this is normal considering my bladder has been operated on 3 times since January 17! I tend to forget that the bladder is a very sensitive body part and it doesn't really like to be bothered. And it is STILL healing. All-in-all, I was blessed to find such an awesome surgeon. It still amazes me that this guy actually calls me himself to discuss care and concerns. If I don't have any problems between now and January, he will likely release me completely. I'm not sure I'll know what that feels like. I wrote to my local urologist and sent him a copy of surgical report and thanked him for "making' me go see a pelvic floor reconstruction specialist.
On Monday, December 3 I had my annual gynecological exam with Dr. H. This was also my "1 year" follow up to the hysterectomy (which was January 17). He wanted to see me in December rather than January to make sure I didn't need any changes to hormones, etc. He was amazed at how well I was doing and genuinely thrilled that I'm not leaking anymore. As with Dr. B, I continue to recommend Dr. H as one of the truly great docs. In October, I sent him my last 2 surgical reports (March 2 and the Sept. 11 reports). A few days later, my cell phone rang. I didn't even look, just answered it. It was Dr. H! He had received and read the reports and wanted to check on me. Ironically, my friend and director of nursing, Susie, had been to see Dr. H. on Sept. 13 and she had called me while I was still in the hospital. She said that some of her appointment with Dr. H they discussed me because she had put my name down as her referral person. She told him I had had the surgery and was in hospital. He told her that he thought of me often as my situation had been so unusual. He told me the same thing when he called. So he was glad to get my reports and took the time to make a follow up call. Isn't that cool? As far as the hysterectomy recovery, I feel great. In fact, during this entire fistula ordeal, I have felt good and never really felt ill or sick - just uncomfortable with being wet ALL the time. The whole pelvic exam thing used to embarass me to death but now I'm kind of numb to it and it's routine. That says something in itself, doesn't it??? I did tell Dr. H that it had been more than a year since I was sexually active. He said he understood why prior to the last surgery, but said things look good now. I explained that Dr. B put me on what I call "Dr. ordered abstinence." for a total of 12 weeks post removal of catheters/stents. He laughed and said, "do what your doctor orders. We don't want any more problems with the bladder!" I told him I'm following Dr.'s orders. (DH has been a trooper on this issue, BTW).
We are heading into the Holiday "home stretch" at the facility. We had a wonderful Senior Companion Luncheon. One of my department managers made the comment during the Halloween party that it was too bad we couldn't use our costumes more than once. In that moment, I started getting a brainstorm and came up with an idea for our "entertainment" skit for the SCP lunch. I wrote a script using the characters from our Halloween Costume contest and a few more. We did a "Golden Living Parade of Stars." My social services director was "Roan Jivers" and we did a red carpet show. We had Cruella DeVille, Marilyn Monroe, Cinderella, her stepmom and 2 step sisters, Dorothy, Glenda and the Wicked Witch. Roan did fashion interviews on the "red carpet" in her best feather boa. We had a blast and had the audience cracking up if I do say so myself. The Senior Companions love coming to our facility for their lunch meeting because they just never know what to expect!
We had a lovely Thanksgiving with about 20 family members joining us for the noon meal with their residents. I was on vacation (because I had to use some days!) but each year, I go to the facility on Thanksgiving Day and help with this event. My family lives about 6 hours away in Arkansas, so the Thanksgiving trip is too much considering that I always take at least a week of vacation and go home at Christmas. So I spend T'giving with my other family at the facility. I played hostess/waitress and our staff was awesome, as always in making sure everyone had on their best outfits and their hair fixed. So now we're headed into Christmas.
Christmas is my social services director's favorite time of year. She starts shopping the day after Christmas for NEXT Christmas. At the moment, it looks like Christmas sort of "threw up" all over the place. We have decorations everywhere - inside and out! But it is beautiful and our residents are loving it. We had open house Thursday and it was great. I'm currently working on an idea for my 4th door decoration which I'll do Sunday afternoon before I attend the annual "Parlour Tour" in town. This is a lot of fun - 9-10 homes are decorated and open to the public. This year is a walking tour of one of our historic neighborhoods, so should be good. Anyway, the door decorations. We have a contest every year for our staff. They each take a resident's door and decorate it for Christmas then we have a person from the community judge. It's a great way to get everyone involved in the decorating. We also have some 4-H kids and Girl Scouts who decorate doors for our residents. The resident Christmas Party is December 21 and then we all just collapse - except Teresa, our SSD who'll be waiting in line to shop at all the sales on December 26.
I'm excited about Christmas because I'm taking a week's vacation to visit my family in Arkansas. I haven't been "home" since last Christmas because of all the problems this year related to my surgeries. This is the first year since the birth of my nephew who is now 17 and a senior in high school that I haven't been home at least three times, usually 4 times a year - even if it's only for a weekend. I missed all the birthdays - March 27, August 25 and September 4 for my 2 nephews and my neice. And for the first time in I can't remember when, I missed my Mom's birthday in May. Between the inconvenience of traveling while wearing Depends and the fact that I was off for 12 weeks with surgery, I just didn't feel I could take the time off - even though I had vacation time. I just didn't think it was fair to my staff. I had my 45th birthday on December 1 and I'm really glad to see 44 go. Since it was not such a spectacular year for me! Then my Director of Nursing had her hysterectomy on Nov. 7, so I really couldn't be off with her on leave. She's doing great, BTW and she's coming back to work on Christmas Day so her assistant DON can be off with her 7 year old daughter.
I'm also looking forward to next week when we have our Christmas Party for administrators. We'll be going to Branson - yippee! - NOT. But it will give me an opportunity to play with my Birthday/Christmas present. I bought myself a laptop computer! With my computer geek husband's help, of course. It's not a new one because all the new ones use Windows VISTA which, according to geek DH, is worse than a nightmare. We found one that is only a year old and DH loaded it with XP and all the stuff I regularly use at home and at work. XP is compatible with my company system so I'll be able to use my "secure" access when I'm at meetings and on vacation and that means that I won't have to return to work and 100+ emails. Yea!!!!! My new toy has a wireless network connection and is really awesome. We had to try out the wireless connection so we went to McDonald's. They offer free wireless access, so we tried it out. It was just so cool. We are now one of the most connected couples I know. Between the two of us (no children) we have 4 televisons, 3 desktop computers and 1 laptop, 2 cell phones and three printers. We have really spoiled ourselves, haven't we? Of course DH does work with computers, so he does use them as tools, but I suppose some would find that list excessive. Oh, well, I've wanted a laptop for a few years now, so I finally broke down and got one - now I'm mobile!
As I started out saying, I have been blessed this year and feel that I have been given an opportunity through this site to share my story with others. I think I have triumphed in the face of a situation that was devastating and I could not have done this without the grace of a higher power and the support of the friends I now count from this website. So in closing, I want to wish each and everyone of you a joyous and happy holiday. Enjoy your families and welcome the New Year with hope, love and peace. Be blessed.
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Welcome to the holidays. . .
11-02-2007 - 10:23 PM
What do you get when you combine 45+ nursing home residents (probably 30 or so who are diabetic) and about ton of Halloween treats? Blood sugar readings that could orbit the sun, you might say. Yep, you get those. But what you really get is the resident who hasn't been up for days out of bed, out of her room and grinning from ear to ear at all the little ones dressed in their costumes!
We kicked off what I lovingly refer to as Holiday Hell Wednesday night with our annual safe Halloween trick or treat. We always have staff in costume and some of the residents absolutely insist on costumes, too. So we had a lot of fun. I usually do something really simple like a 50's teen with jeans rolled up to the knee, my husband's class ring on a ribbon and lots of bubble gum for blowing bubbles which is entertaining for the residents and murder on my jaws! This year I was "challenged" to be a witch. So, I dragged out my Renaissance Festival garb, found my black under skirt (crinkly gauzy material). Put a slinky black stretch skirt under that and cut up a black dress shirt DH has outgrown and bought a witch hat for $1.49 at the local discount store 50% off. Did some pretty elaborate art work with Mary Kay and the lovely Vampire Rouge lipstick (doubling for cheek rouge) and black nail polish. Voila, you have not just a witch, but THE HEAD witch for the day. DH was up early and observed the transformation and was impressed with the creativity.
At the Halloween party, which consisted of glazed and variety cake donuts, coffee, milk and juice, we had our annual costume contest. My staff is very creative. We had a great Dorothy from Wizard of Oz; Cruella DeVille from 101 Dalmations; an awesome Marilyn Monroe and Cinderella after the ball (complete with only 1 slipper, a pumpkin and a sign offering a reward for her lost slipper!) One staff member came as biohazard waste - red biohazard bag, needleless syringes, razors, gloves (clean but with red marker) taped to the bag, in her hair, etc. Another had bags - from tea bags to baggies to fast food and pharmacy bags to gift bags attached all over - she was a "Bag Lady! One staff member borrowed a wig and a flowered moo-moo from one of our alert and oriented female residents and let the resident do her make-up complete with her favorite bright blue eye shadow - she was THAT resident and had another staff member push her in a wheelchair for the costume parade. We give cash prizes for the best costumes and the residents and a couple of visitors along with our therapy team judged. Several residents told me I made a good witch - I wasn't sure that was actually a compliment (LOL!) but they thought I should have won! I had disqualified myself from participation in the contest since - and, well I am the HEAD witch, afterall, you know!
Back to the 45 residents and the candy - we usually have about 25-30 total residents and can host trick or treat in our small dining room/living room area. This year we had to expand into the big dining room as well. I have no idea how much candy we used - we still had donations coming in as we were getting set up for the 6 p.m. start. We had hundreds of plastic grocery bags filled and every resident had a bag of candy. 2 hours and at least 327 kids later (we didn't count the adults with them in the numbers) and we stopped counting at 327 because the person counting had to go to the bathroom and we forgot to have someone keep counting) we about 30 pieces of candy left over! I'd say we had 350-400 POUNDS of candy and I would have gladly given away 1000 pounds more just to see those smiles and hear those residents laughing and oohing and aahhing over costumes and cute kids. When I looked up and saw our 48 year old resident who has had uterine and ovarian cancer and has a urostomy and a colostomy (due to the extensive nature of the cancer and its effects) and has so many reasons to be clinically depressed sitting right at the beginning of the line with a huge, beautiful smile on her face, I got cold chills - it was a totally amazing and awesome experience. At some point during the event, I think every single staff member made their way to the front of the facility to see her and tell how wonderful it was to see her up and out of her room! I stuggled not to ruin my mascara or my big black mole with tears!
Anyway, it was an absolutely fabulous day. Our residents were exhausted (as was the head witch since she still isn't at 100%). On Thursday, they all wanted to know where the trick or treat photos were! So I had to take the digital card to WM and have the prints made (2 sets and a CD so we can get reprints if we need them for scrapbooking since the residents all want their pictures to show their families!) And now we enter phase 2 of Holiday Hell. We begin with Advisory Council's last 2007 meeting on Nov. 5; the last 2007 Family Council meeting on Nov. 12 and on Nov. 15 we'll be hosting the monthly meeting of the county's Senior Companion Program (about 100 retirees who work for a stipend in nursing facilities and individual homes providing interaction and companionship, help with shopping, etc.) In our facility we have about 15 folks who help with all our programs in activities. All of these involve providing a meal and the SCP event involves special entertainment by our management team for the enjoyment of all. We're the only facility of the 4 in our county that annually puts on a short entertainment before lunch! Not sure what we're doing for sure, but it's always fun. We will have our quarterly Memorial Service and Communion with our Chaplain on the 17th and we'll remember those who have gone during the last 3 months or so. Phase 2 ends with Thanksgiving when we invite families to share the noon meal with their loved ones or they can choose to bring their own holiday meal to the facility. Last year, we had 3 areas set up for families to bring their own meal and we served approximately 20 guest meals along with our resident meals. So we'll all be volunteering for that and then having our holiday meal early afternoon or evening at our homes.
I get the weekend to rest and Phase 3 begins on Monday. My Social Services Director is all about Christmas. She will probably begin the outside decorating on Friday after Thanksgiving - thousands of white lights, blow up thingies, candy canes lining the driveway. Since I'm the Chamber President-Elect, we are hosting a holiday open house during "Christmas in St. James" week (Dec. 2-8) on the 6th. So we have to have all the decorations up. That means 5 fully decorated trees, wrapping all the framed items to look like packages and hanging about 500 paper snowflakes from the ceiling. We'll be busy the week after Turkey Day! And of course shopping. I think I may have mentioned our auctions and other fundraisers that we do for our Resident Christmas fund. Each year, we raise between $3,500 and $4,000 to buy gifts for the residents. My SSD has a personalized shopping list for each and every resident (just like you would for the different members of your family) and she starts shopping in January to get ready for Christmas. But she will spend the remaining time the next few weeks finishing the shopping to ensure that each resident has between 5 and 6 gifts selected for them. We will wrap them all after we've marked clothing and other items with resident names. Then we distribute them at the Resident Christmas party on December 21 when Santa arrives. Families are invited to attend this party and join us for lunch afterwards. We will have the resident's choice that day of fried chicken from the deli, mashed potatoes with gravy, sweet corn, hot rolls and pie (usually a choice of apple or cherry.) Did I mention our staff party is December 13? We conclude Phase 3 of Holiday Hell with the "Happy Noon Year" party on December 31. Since none of our folks stay up past 8 or 9 p.m. we ring in the New Year 12 hours ahead of schedule at 12 noon instead of 12 midnight. We do the countdown, have noise makers and all the fun before lunch!
Then we all collapse and thank the PTB (Powers that Be) that there are NO holidays in January - we don't really count MLK's b-day. The we start the new year off with the Valentine's Day party in February. You get the picture I think. I'll be exhausted from working my tail off. And you're going to think I'm nuts. But can you tell I LOVE what I do? We have an amazing group of people to care for and an awesome group of people to care for them. How GREAT is that? You just never knew the nursing home could be so much fun did you?????
Thanks for letting me share this. I think I wear DH out sometimes because I love my job, love my residents and get really excited about the things we do for them. And I'm a work-a-holic when it comes to my facility and making it the absolute best it can be. He's heard it before so he's kind of "**-hum" about my excitment.
Hope everyone had a fun, safe Halloween and is looking foward to a great Thanksgiving with family.
PS: Still no leaking! Things seem to be going well. I remain cautiously optimistic!!!!!!
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So far, so good. . .
10-24-2007 - 09:06 PM
How dry I am....shouldn't that be followed by a hiccup or was that a deodorant commercial???? Sorry, couldn't resist, especially after reading the comments for my last entry. Thanks to both. I really do appreciate all of you.
Let's see. Monday was my six week follow up with Dr. B for the VVF repair. I'm still dry - no leak from the vagina - I should say. If I wait too long to dash to the bathroom, I have dripped a couple of times, but absolutely nothing like needing disposable underwear AND a Poise pad together. No leak from the vagina and I'm wearing regular underwear! I'm definitely having a paradigm shift.
My appointment was not what I anticipated. I thought I'd have to have a cystoscope as part of the follow up. (If you've never had this procedure, let me tell you it's not fun). I was reading some posts on the Pelvic Floor and Bladder Issues forum and checked out the definitions section. It says that this procedure is usually done under a local anesthesia. I can tell you that I've lost track of how many I've had and I've NEVER had a local anesthesia! The scope is inserted through the urethra into the bladder and liquid is injected through the tube. The scope has a light attached and sometimes a camera! While modern technology has made many advances, the scope tubing and lights/camera are still about a centimeter in diameter and very uncomfortable. Needless to say, I was not looking forward to this fun event.
But wonder of wonders - I was not taken to the "procedure room" but to a regular exam room. I got a new nurse (only 3 weeks working in urology) who had read my file and had no clue what a vesicovaginal fistula was and no idea about the extent of the procedure I'd had. But she was very nice and asked me about it. I felt like the expert! But she was genuinely interested, so I filled her in. If you haven't been to a urologist's office lately, allow me to give you a quick update. At both my local urologist and at Dr. B's office, I am usually the ONLY FEMALE PATIENT in the waiting room. The other females in the room are the wives of the older male patients who are likely there for prostate problems. The remaining patients are males of varying ages, presumably there for problems related to erectile dysfunction. Now I don't know this for absolute sure, but considering that almost every scratch pad, ink pen, poster and brochure are for Cialis, Viagra and Levitra, it's a pretty safe bet. There are a few things around for urinary incontinence, Detrol, Ditropan, Enablex, but nothing like the ED meds. My point is, that it is not surprising that the new nurse had not encountered a patient with a VVF or anything like it. When I think about it, it also makes sense why the surgical interns were following my case in the hospital - something out of the ordinary, I suppose.
Anyway, I had prepared for the cystoscope. Even had DH go with me because I always feel so crummy afterwards. But alas, no cystoscope! Dr. B. had me complete a questionnaire about urinary urgency and nocturia and such. He asked if I was having any leaking and I said just when I wait too long. I'm going about every 2-3 hours between trips during the night. Using any pads in your underwear? No, nothing. Any discomfort, feeling like the bladder hasn't fully emptied? Some, but not to the point of really being uncomfortable. He explained that the bladder will probably still spasm for several months - possibly as much as 6 months. There is scar tissue and healing that still needs to happen in there. He wants to switch me to an extended release antispasmodic from the Ditropan 3 times a day for at least the 6 months. He prescribed an extended release Enablex which I am to take once a day. I did have a question about the knot around the incision and the continued puffiness on the right side. He took a quick look at this area and said it should go away over time and was related to the area where the SP had been. Nothing to be concerned about as the incision looks really good and has healed well overall. The soreness I'm having which feels like sore muscles is from the fact that ligaments have been stretched and tissue moved around and relocated in the pelvic area and not unexpected. Again this will ease with time and I can continue to take Alleve for this. I should watch lifting for another 6-8 weeks. And he's not trying to "torture" me, but I should avoid intercourse for another 6-8 weeks as well - there is still a signficant amount of healing that needs to happen in the pelvic area and the vagina. He wants to be sure that things are healed and not take any chances on jostling something or causing pain or discomfort unnecessarily. However, overall things look good and are progressing as they should. He wants to see me in 3 months. 3 months ??????? If things are good then, he'll see me again 3 months after that and we will be finished with this healing process. Hmmmmm.
Reactions: First off, I am still just getting used to the fact that I'm not wearing Depends and not pouring urine constantly, so a minor drip (which I actually had occasionally before the TAH because I'm terrible about putting off going to the BR if I'm busy doing something else) I can absolutely live with! But if he thinks I can eliminate even that eventually when the spasms lessen, that would be great. I expected the soreness, similar to after the hysterectomy - no big deal. The knot and the puffy belly on the right side were a concern. But now that I know this should go away eventually, I'm good. Lifting isn't a problem. DH won't even let me bend over to get a pan from under the cabinet. My co-workers watch me like a hawk! If I even think about lifting something, they get on to me. So no problem there. I'm not planning any furniture rearranging or major household moves.
Now, the whole intercourse thing made me laugh. Since sex the few months before the TAH was uncomfortable, we didn't - since mid November 2006 or so. When I was released post TAH, it wasn't really an option as I was leaking urine from the vagina and this just wasn't high on my list of priorities at that time. And, of course, I did have vaginal surgery for the fistula the day after I was released for the TAH! Dr. K never actually released me after the March 2 vaginal VVF repair surgery because I was still leaking urine! DH and I have joked that I should innocently ask Dr. H if he remembered to release me for intercourse after the TAH! However, as it stands now, waiting another 6-8 weeks puts us somewhere around Christmas. Since I'm taking a trip to Arkansas for about 10 days and DH is not joining me for this extended visit to my family, it won't be happening the week post Christmas. It appears it will likely be 2008 before sex even becomes an option. DH has put no pressure on me. He wants me well. In the past few weeks, with an end in site, he's made a few passing comments regarding sex, but he is very patient and deserves a medal of commendation for this entire year and all he's done as my primary caregiver and support system here on the home front. I mean, he even learned to flush a foley catheter for goodness sake! What an awesome guy. I don't know how I would have gotten through everything without him.
The problem, I think now, will be me. Frankly, I'm terrified of doing something that will jar something or cause something to go wrong. Logically, I know that things inside are secure. However, I don't know how I'll feel or if there will be dryness or other hitches and all the "what ifs" are just plain scary. The more I think about this, the bigger the problem seems to become in my mind. Now I feel like I'm stalling. I'll see Dr. H for my annual in late November or early December. I know I can talk to him about this, but I feel sort of silly - like I'm about a year behind the curve on this stage of the post TAH process! Guess I'll have to check out the forums related to this problem for a while and see what others have experienced. Any thoughts on this?
Well, that is certainly enough for now! I hope I didn't offend anyone with this last bit. Apologies if I did. But I am feeling a bit weird about this and would appreciate any input.
Fall here in central Missouri is turning out to be cool and colorful. I'm planning on enjoying it this weekend as we celebrate DH's 46th birthday (Oct. 26).
Take care all. Enjoy the fall.
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Still dry, so far. . .
10-14-2007 - 05:36 PM
Well, my first week back at work has been quite hectic. And as you might imagine, I've been pretty much exhausted by the time I get home each day. I've spent a lot of time this weekend napping and resting. I worked on and finished our facility newsletter and updated mailing labels. So on Monday, I'll zip it into our fancy new Xerox machine and we'll have our 4 page newsletter printed and on it's way by the afternoon.
Some of you may recall that I have been encouraging my director of nursing (DON) to make an appointment with my gynecologist, Dr. H. Finally, after her 4 episodes of painful menstrual bleeding in 6 weeks (that's right she started and stoped 4 times!) she came into my office and asked for his number, which of course I have programmed into my cell. Her appointment was the Friday after my VVF surgery. She called me after she left his office to tell me she saw him and that she will be having her hysterectomy in November! She also shared with me that she told Dr. H I was in the hospital getting the leak repaired and that he said he thinks of me often. He told me several times during the course of my TAH recovery that he had never encountered anything quite like my bladder situation.
Since I have my annual exam with him later in November, I thought he might be interested in knowing about the 2 VVF surgeries. So I sent him a note this week and copies of both operative summaries. On Friday, around noon, my cell phone rings and it's Dr. H! He's calling to check on me and let me know how much he appreciated me sending copies of the reports. He said he had thought of me often over the past few months and was glad I had sent the reports for my file. He wanted to know when my follow up with Dr. B is, what did the cystogram show, etc. I was really impressed that he called and thanked him for following up. He said he was glad I was on my way to recovery. I shared that my next appointment with Dr. B is October 22 and that hopefully all will remain good. He said not to rush on my November appointment. Make sure everything is healed, even if I have to wait until early December. DH was pretty impressed that he called. I called my DON to let her know he had called. When she saw Dr. H, she really liked him and she also thought that was impressive that he would do that kind of follow up. She feels good about her choice in going with Dr. H.
This week will be six weeks post surgery. I feel good and am getting my energy back. Appetite is still not great - except for some reason this time as with the previous surgeries, I am craving sweets - particularly chocolate. Now that's unusual because under normal circumstances, I'm not a big sweets person and I've never been particularly fond of chocolate! My chocolate of choice - DingDongs! Don't ask me why, I have no idea! Anyway, I have some ongoing discomfort and aches which I'm sure are related to all the moving around inside and repositioning of things. I'm lop-sided as I still have some ongoing swelling on the right side of my tummy where there were some recalcitrant staples and where the SP was located. I'm alternating cold packs and heating pad in this area each night but it looks like it will just take some time to fully heal.
The good news is that I am still dry. No leaks. I can last 2-3 hours at night without having to get up to go to the bathroom (up from the 45 minutes to an hour schedule of a couple weeks ago.) I don't think I'll be completely comfortable that I'm really fixed until I see Dr. B on the 22nd. I'm certain he'll do a cystoscope to make sure there aren't any recurring holes in the bladder. I'm anxious to get that overwith. I think it's going to take a while to really feel that I'm normal again. I'm taking it a day at a time on this road to recovery. I know that sounds cliche, but it's true.
Well, I hope you are all having a great October. We're getting ready for Halloween at the facility. We invite the community in for Trick or Treat and our residents pass out the treats. It's usually a blast for the residents to see all the kids in costume. Our staff gets into the act by dressing up that day as well. We'll be having family Thanksgiving and then our annual Christmas party the Friday before Christmas. This involves gifts galore, Santa and dinner for all residents and their family members who attend the party. It should be a busy, busy next few months.
Take care all. Talk to you soon.
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Finally, leak-free . . .
10-09-2007 - 07:29 PM
Today, October 9 marks the official 4th week of recovery following my VVF repair surgery on September 11. As of this moment, I am leak-free and cautiously optimistic. You might wonder why I've waited so long to journal this chapter of my saga. All I can say is tha this has been the toughest recovery yet.
My surgery was scheduled for 9 a.m. on that Tuesday and I was to be at the hospital at 7 a.m. As I mentioned before, that meant leaving home at 5 a.m. and of course nothing to eat or drink after mid-night (I had a late dinner at around 8:30 the night before). I check into the surgery center at the appointed time only to learn that my doc was going to be running late on the first surgery. We were given the pager and told to stay within the confines of the hospital. We went to the cafeteria where I got to watch DH eat cereal - no big for me as I'm not a real breakfast person - at least not quite that early (7:30 a.m.) Around 9 a.m. they beep us and we head back to the surgery center thinking the ball is going to roll now - NOT.
I'm taken to a prep room and some preliminary things start to happen - vitals, etc. However, nothing major. At around 10:30, I'm getting really shaky and have a tremendous headache. The nurse finally gets the anesthesiologist nurse to start the IV and the IV fluids immediately helped the headache and woozy feeling. However, as the anesthesiology nurse is gearing up for the surgery, they pull her off my case because it looks like it's going to be even longer on my surgery. Dr. B's first surgery is apparently having many complications.
Finally around 11:30, the surgical resident comes to see me. Am I aware of the procedure I'm having? Yes, I'm having a vesicovaginal fistula repair with an omentum flap. When he finally closed his mouth from shock, he said, "Wow, you say that like you know what you're talking about." I explained that Dr. B had gone over the procedure with me in detail and I further educated myself on what was involved in the surgery. Do I have any questions? Not at this time other than how much longer are we looking at? Surgical team needs to grab food, but we're shooting for 12:30 or so. At 12:30, Dr. B comes in and it looks like we're shooting for 1 p.m. Finally, everyone is together (including about 4 interns) and we're ready to go. I woke up in recovery at around 6 p.m.! The procedure took around 4.5 hours!
When I got to a regular room, the nurse hands me a PCA device for morphine and tells me I can use it every 10 minutes if I need it! Later than evening, I wake enough to learn that I have both a foley and a suprapubic catheter, as well as 2 ureteral stents! You can all imagine my joy at the catheter situation! Bright and early the next morning (7:30 or so) I get a visit from Surgical Resident Ted and his interns. Apparently, my fistula was unique in position and the fact that they found several more lesions inside the bladder that had to be addressed before the surgery could be completed has landed me in the medical photo journal. I get to be the case for surgical intern rounds - just like on the TV show "Scrubs"! What fun! Later Dr. B does his rounds and he tells me that I have 2 catheters because they don't want anything in the bladder - he wants it dormant so it can fully heal. At this point, he isn't sure how long I'll be in the hospital but the plan is discharge on Saturday. However, late Friday afternoon, Dr. Ted comes in and says my labs look good, my output looks goof and Dr. B said I can go home! YEAH!. He's ordered home health services for me. I just can't wait.
Just one problem, DH is not planning on coming to the hospital until Saturday, so I call and he heads into St. Louis. The trip home was really painful! Never knew that interstate had so many bumps! Anyway, I learned very quickly that trying to sleep with 2 catheters is even more difficult than with one. The HH nurse came on Saturday and taught DH how to flush the things - In through the foley, out through the SP - 3-4 times a day. The plan is to make sure the SP doesn't clog and that the bladder heals. I am extremely sore, unable to really move freely or get comfortable in any position. They had to extend the original incision by 4-5 cm on each side. Flushing is painful and uncomfortable. With both the TAH and first VVF repair, I felt better within a week of getting home. Not this time. I really hurt - front to back and everywhere in between. I found myself taking the Percoset more than I did with the previous surgeries. My head stayed "fuzzy" for more than 10 days after the surgery, I assume from having been under the anesthesia for so long and taking the Percoset. As before, I have no appetite - I just don't want to eat - even though I know I need to.
I had an appointment scheduled on September 26 for a cystogram and catheter removal and I am counting the days, even as I'm not looking forward to the discomfort of the cystogram.
Ladies, if you've never had your bladder "dormant" for 2 weeks, you just cannot imagine the pain involved when the radiologist injects 150 ml of dye contrast into your healing bladder and tells you to turn onto your side. It was agony trying to hold still while they took the pictures. I know it was a necessary evil, but I thought I was going to just bawl and I'm usually able to withstand pain and discomfort. But it really hurt. However, the radiologist looked at the pictures right then while the techs were flushing the dye and she said that there was no leak that she could see. She sent the pictures and her report to Dr. B for my appointment with him immediately after the cystogram. He agreed - NO LEAK, NO FISTULA! Catheters out and staples out. For some reason, his nurse printed a copy of my operative report and he gave it to me. Talk about some interesting reading.
When they refer to Dr. B as a "pelvic floor reconstructive specialist" that is an apt description of what he did. Both he and Dr. Ted kept telling me in the hospital that the "outside" might not look complicated since they used the TAH incision, but what went on inside was very complex and extensive. After reading the report, I can only say, they didn't exaggerate. Suffice it to say that "extensive" barely covers this procedure. I have jokingly told some friends that I think I may have a "bionic" bladder! The amount of work done on this one body part is beyond my comprehension and just amazing that I've gone through it.
So, as I said, as of today, I've been catheter-free and leak-free for for 4 weeks now. The first couple of weeks meant getting up every hour to use the bathroom - but I was DRY in between. It took me about 2 weeks to stop using pads. But I still find myself expecting to have damp underwear and thank goodness that hasn't happened. I went back to work on Monday. I'm taking it really easy and moving really slow but since I can do my job sitting down for the most part, that's what I'm doing. I had used all of my 12 weeks of FML and our HR person was getting pretty snotty about extending the leave so Dr. B reluctantly let me go back. I still have a follow up on October 22 and should have one more cystoscope done that day. I hope it's the last! Then, I get to go back for a check up with my gynecologist in November. I have to say, I'm looking forward to the end of 2007. It has not been my best year!
At this point, I hope to be writing the last chapter of this saga in a few weeks that says I'm really finally fixed! Anyway, sorry this is so lengthy, but I wanted to share this experience as I have the other parts. I can honestly say that finding the right doctor meant so much in the long-run. It is still an amazing thing to be dry after 8 months of using incontinence briefs and pads. I will never take being dry for granted again.
I wanted to say thanks again for all your support and prayers during this 8 months. Don't know what I would have done without all of you to share with and vent to! As I have said before, chronicling this journey has been cathartic for me. It has kept me sane to share the experience. I know that I have been wordy and long-winded on this and many other entries. Thanks for your patience. Will keep you posted on the next chapter. I hope my next entries will be positive and I can share some fun things with you over the next few months. I love fall and Halloween is one of my favorite fun days. I'm actually looking forward to the holidays now that it looks like I may have my normal life back.
Anyway, thanks again. Take care and see you soon!
(This entry has 3 member comments.)
Long distance surgery is a pain. . .
09-04-2007 - 10:13 PM
In more ways than one! I may have mentioned that the next chapter in my epic journey is the abdominal bladder repair at a hospital located about 1.5 hours from home. I have to be there at 7 a.m. for a 9 a.m. procedure which means we'll be taking off around 5 or 5:30 a.m. Yeah! Not a morning person, here, so that really bites for me. Whyever can't they do surgery at a decent hour, you know, like noon or 1 p.m.??? Sigh.
Anyway, I don't think I've mentioned that DH is a creature of comfort - his! And he has frequent, on-going severe, migraine-like headaches which no has ever been able to figure out and nothing ever really works for very long to relieve the pain. Generally, he goes to bed and naps because analgesics don't work and neither do things like vicodin. Everything causes them - no food, too hot, driving in car, people talking loudly on a cell phone sharing their private conversations with all and sundry, Dr. Phil, Judge Judy and Jerry Springer's shows - are you getting the picture yet? Good thing he has his own personal cave (our basement where his office is set up) and work that can be done from said cave rather than an organized place of business!
So I'm sure that when Dr. H and Dr. K came out after the first surgery and found him lying on the floor of the surgical waiting room, they were a bit puzzled. When Dr. K sent someone out to tell him the second surgery was running long, he asked for one of the beeper thingies (you know, like they have in restaurants to let you know your table is ready) and went to the car to sleep off a headache. They beeped him when the surgery was over and Dr. K had to wait for him to come up (after 4+ hours in surgery). I'm sure that was just great for Dr. K.
This isn't the first time he's chosen the floor. When we went to Canada a few years ago for vacation, he got a really bad headache on the flight from KC to Boston which wasn't helped when the guy in the third seat threw up as we were being served Cheerios! When we got to Logan, he got off the plane, got out of the traffic and laid down on the floor where a customer service agent gave him a box to throw up into! They had to call the airport EMTs to check him out. This set us back about 2 hours!
Needless to say after both surgeries, I sent him home after I was in the room. Sort of silly for him to sit in an uncomfortable chair and watch me sleep off the anesthesia. And since we only live about 2 minutes from the local hospital, that was okay. Now, however, the hospital is 1.5 hours from the homefront. Gas is super expensive and there is every possibility I may only have to stay the one night. (I'm not counting on it with my history, but there is the chance.) So what to do? Simple, get a hotel room, at least for the night. The cats can fend for themselves with dry food for 24 hours, so this should be a slam dunk, right? NOT.
The hospital where the surgery is scheduled in StL is a "major medical center" with a teaching hospital, research hospital, children's hospital, etc. and several branches all over the metro. There is a really nice hotel that actually is connected to the hospital via walkway. That is the obvious choice. So being the planner in the family, I jotted down the website address last week and checked it out when I got home. The accomodations are beautiful in the pictures and the website touts all the wonderful benefits of the hotel - pool, spa, wireless internet, etc. DH just needs an icy cold AC, curtains that block 99.9% of the outside light (he may be part vampire!), a shower and a bed.
I cruised over to the rate page on the site and almost had a stroke! One adult, one night - $199!!! I don't think so. So I went to the mouth of the cave and asked if he would like to check on an alternative because there was nothing on the website to indicate any type of discounted rate for hospital patient families. His response is that he'll check on it. Of course, I can't leave it alone. They have a "contact us" email address. You guessed it - I had to fire off an email and inquire if there is a rate for patient families. In the meantime, he is supposed to be checking on another hotel near the hospital. I've given him the info - zip code, streets nearby, you know.
So, tonight, I ask him if he located another place to stay. Of course he hasn't even looked. Which means if I don't, he'll be grumpy and whiny and lounging on the waiting room floor and driving back to Rolla and a general RPITA (royal pain in the arse!) next week. I checked my email when I logged on tonight and voila, there's an email response to my question. The hotel has a courtesy rate of $94 per night for patient families. That's much better. So, he'll be making his reservation tonight. He'll be right there at the hospital, not have to fight traffic and parking nightmares, etc. And did I mention the road construction all around the hospital??? After I'm in recovery, he can walk across the hospital and take a nap (that's what I'll be doing!) and be there when I go to a room. Everyone should be happy and the folks in StL won't have the dubious pleasure of seeing my hubby lying on the floor of the waiting room. Problem solved.
Hopefully, the long-distance surgery won't be completely stressful for us both. If he gets rest, he'll be a much better nurse! We'll see.
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It's Been A While
09-02-2007 - 05:44 PM
Wow! I didn't realize how long it has been since I journaled. But I've been really crazy busy trying to get so much done before I go on medical leave with my next, and hopefully FINAL surgery. Summer has been really nuts and extremely hot here in Missouri. Having to use disposable incontinence products has been a pain in the rear. They don't breathe like my favorite Jockey cotton undies and they are really hot! Boy is that whiny or what?
Because of all the bladder problems and knowing I was going to need the time off for surgery, I haven't taken any vacation time which means I haven't seen my family since Christmas!! That's been a real bummer because I usually see them 3-4 times a year. This is the first year since my nephew was born 17 years ago and my niece 11 years ago that I have not made it to Arkansas for their birthdays (August 25 and September 4, respectively.) I usually take a week of vacation around Labor Day and spend time with them and the rest of the family. So this has been a bummer summer! Hopefully, I'll be healed and able to get home for Christmas! I can only hope.
I am scheduled for my fistula repair surgery on September 11 at 9 a.m. I had my preoperative tests done on Thursday at the hospital. Blood work, EKG, physical, a bunch of questions and a meeting with the anesthesiologist's ANP. Glad to have that all behind me. I have opted to have the abdominal surgery versus the laprascopic procedure. I may have mentioned that before. It means a bit more down time, but the doc assures me that the success rate for the abdominal approach is higher - 98%. I just pray I'm not the 2% exception. That would really be a downer!
Things at work have been really good considering that we haven't actually had a "boss" for 6 months. However, I now have a new boss. My previous Director of Operations resigned 2 weeks before I returned to work from medical leave in March and as sometimes happens in large companies, he was given the opportunity to leave without working out his 30-day notice. So he was gone when I got back. He was a wonderful, supportive supervisor and just this week, several of my colleagues and I were at our annual healthcare convention and all of us agreed that we really miss him. Anyway, we have a new DO and it's a female. Oddly, that makes some folks really nervous and I'm not sure why. Our industry is a largely female work force at all levels - except upper management, usually. Not sure why that is, but it is. I've notice over the years that some women have trouble working for another woman. I don't get that. I guess my philosphy has always been - just do your job, don't worry about the politics of the organization and things will happen as they should. The new DO seems very knowledgable about long-term care and she is very experienced. She doesn't know our company, but that is to be expected. I'm sure she will learn quickly and we have a vast range of resources to help her. Unfortunately, I'll be off for the next 4-6 weeks, so I won't get to really know her as quickly as I would like. Oh, well, I'm sure we'll have lots of opportunity down the road!
Hope you've all had a great summer. I'll probably be dropping in more frequently in the next few weeks since I'll be home from the hospital and recovering. I'll be picking up the new season of "As the Bladder Drains"! Enjoy your Labor Day.
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Breaker 1-9. . .
07-21-2007 - 01:05 PM
Hello everyone. Just read some of the comments from my last post. Wanted to give you all an update on the great "walkie talkie" experiment.
Well, as someone pointed out, if we're picking up highway traffic, couldn't they be picking up our conversations as well. The answer is yes! I actually anticipated that problem and the concern with resident privacy rights and the HIPAA (Health Insurance Portability and Accountability Act) regulations which protect patient privacy. We don't use resident names at all - only room numbers and bed numbers. If you're the person assigned to that hall, then you know who the room/bed belong to so that's not a problem. You would think that folks would use common sense and realize that if we're all on the same channel that you should try to have private conversations! However, I finally had to write out a guideline policy for the staff, essentially telling them to use the radios to alert another staff member of a phone call, a call light, or to call an office phone extension - just like we did when we used the overhead page! We have 2 different brands of radios because I couldn't get enough of the one type. The second type has a really easily activated "voice activated" hands free feature. So every now and then we start picking up everything someone is saying and getting a lot of static. Finally figured this out about Tuesday. The unit is in a pocket, so it's scratching against material and coming on as the person speaks to a resident or another employee. So I've had to do several quick inservices to show them how to check for the VOX being turned on and how to turn it OFF!
So, now, practically everyone in the building has a radio and you cannot imagine how helpless they are! "Mine doesn't work. I can't hear anything. Mine won't come on." AAARRRGGGHH! Try turning it on. Is the volume up? Did you check the charger? I'm finding that my staff is also very clumsy. Thank goodness these things are made for wear and tear. When they are dropped, the batteries often move and the connection isn't good. Simply taking off the back and adjusting the batteries fixes the problem, unless of course they didn't make sure the charger was securely connected and thing didn't charge! Amazingly, people who have the most complex cell phones and electronics find a simple volume control on a WT to be beyond them! I usually find the volume sitting on 1 which really cannot be heard when the radio is in a pocket. Even with instructions, people can't figure out how to turn the things on. You have to press and hold the button and voila! it comes ON! Amazing. After some further reading, I figured out that these things are dual frequency, so channels 1-7 are the channels that tap into the regular CB traffic and such. However, Channels 15-22 are high power, but are single frequency. We've dropped down to Channel 20 and are having no problems with bleed over from the highway! No more singing!
It is noticably quieter in the facility. And I think it's a much nicer atmosphere now that we aren't constantly paging someone to the phone or some such. It's just taking some getting used to. Of course some of the staff think that the WT's are evil plot devised in conjunction with the official move of the "staff smoking area" to an outside location. For the entire time I've been at this facility, our breakroom has been a "smoking breakroom". If you don't smoke, you either have to try to have your lunch or break in a smoke filled room or you sit in the resident activities room next door which really doesn't get you away from work because residents come and go from the there. For the entire time, I've wanted to move the smoking outdoors but our previous company had left this decision up to each facility administrator and this had been going on forever at our place from the previous administration. Non-smokers like myself were the minority! I feared a mutiny without company support to make it so. However, the new company (we were sold about a year ago) finally mandated that staff smoking be outside! HOORAY! So, I bought a 10 x 10 metal building so they won't get soaked if it's raining and to block the wind and officially July 16, smoking moved outside! You just can't believe the difference it makes. Now we can deep clean the breakroom and work on getting the disgusting yellow gunk off the walls and the floor.
Now when I show off our really awesome activities room complete with our newly installed kitchen, the second hand smoke is not overwhelming! The activities room is right next to the staff breakroom! When our staff clocks in, those who don't smoke don't smell like an ashtray from even a brief encounter with the time clock in the breakroom. We've had some grumbling about having to go outside but nothing major. However, they are convinced that they were given WT's so we can call them off break and keep tabs on them! Sometimes, they are like rebellious teenagers! Some of the management team - even those who smoke - have told the staff that they could have been banished to the outside world without benefit of a covered location, which we didn't have to provide. Or worse, we could have done like the local hospital and bansihed smoking and tobacco products from the property all together. The hospital staff who smoke have to cross the street and stand on a sidewalk regardless of the weather to smoke. If they are caught smoking in their vehicle on hospital property, they can be disciplined for violating the policy. Now that they have built the new doctor's building where staff parking used to be next to main hospital, the staff parking is about 1/2 block away. That makes getting to your car and back on a short break virtually impossible, anyway. I've never smoked - never even tried it. Don't get the attraction of it. And am constantly amazed at the number of people who work in health care who do smoke! Nurses believe it or not are some of the worst offenders. I think I have three nurses out of 15 who do not smoke! Practically every CNA does. Amazing. Okay, jumping down from my soap box. Sorry.
Today, I'm supposed to be finishing my facility newsletter. I have it done, just need to get it edited and ready to go. We have a spiffy new copier at work that prints it in "booklet" form and all we have to do is fold. I was paying the local Staples about $60 a shot to do this and having to wait for it 2 or 3 days and not always having a great product. Now I do it myself and get much better results and it takes me less than 30 minutes to get 175 copies. I have to update the mailing labels and get everything ready to mail on Monday. I may go into the facility tomorrow and do the copies and get everything ready to mail.
Oh, in case you were curious. The new centerpieces worked out nicely. Our residents really like the new tablecloths and the change in colors of the centerpieces. As soon as we get our new cloth napkins, we'll be wrapping silverware in the napkins and the dining rooms will look like a restaurant set up. Just makes it nicer for the residents and it looks really nice as well. You might think they don't pay attention, but let me tell you, they do!
Guess I better get busy. We've done our Saturday morning errands and now I'm settling in for the afternoon of work. Hope you all have a good weekend and a great week.
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Just some thoughts
07-15-2007 - 02:02 PM
Hi everyone. Just wanted to say hello and offer a few comments to your comments. I made the trip into StL on Saturday with DH tagging along. In addition to my nail appointment, I had some errands to run for the facility, so we spent most of the day in the city going hither and yon.
We started the walkie-talkies on Friday morning at work. As I said before, I feel absolutely silly. Initially, we decided we'd just go with "channel 1" then no one would forget to change it when they turned on the radio. However, all of us forgot that we can see the interstate from the front door across the field and guess what? Yep, we picked up all the trucker traffic on the radios. So in less than 15 minutes we switched to channel 2. That was better - no real radio traffic but us. However, my activities director was convinced that her radio was possessed. All hers did was have static. Not really sure what was up with that, but since our maintenance guy took a vacation day, I had her switch units and it was fine. We decided "number 5" (I had to number them all for inventory) just wasn't her number! Anyway, around 4 p.m. someone started singing some really awful song over the radio. My Director of Nursing (DON) called me on the interoffice intercom and said are you getting this? So we may have to find yet another channel. Surely with 22 to choose from we can find one that is obscure enough to stay pretty open for us. Using the silly thing is going to take some getting used to. Doesn't do much good when I leave it on the desk and go down the hall - kind of defeats the purpose, you know. Equally, it is sort of intrusive when I forget to leave it on the desk when I go to the bathroom! There are just some places you don't need to have a cell phone or a walkie talkie!
Anyway, picked up 8 more radios at 2 different WMs. Also picked up materials to make new centerpieces for the facility. As you might imagine, having to come up with 15 of them can be a challenge. We've been moving to "enhanced dining" for about a year and I've held off on ordering tablecloths because we didn't have a great laundry staff. When the bath towels come out wrinkled, you can imagine what our resident's clothes looked like and I'm sure you can imagine what the tablecloths would have looked like - one big wrinkle. So we've been using cloth placements in the center with the small centerpieces I created in November - not bad but not really great. Well, we've got a laundry person now who is wonderful. She takes great pride in ensuring that everyone gets their clothes back and that they look good - minimal wrinkles. Even the towels look better - HA! So I broke down and ordered the tablecloths - a nice navy (so they won't show stains). However, I have to change the centerpieces which are now reds and burgundies! We're going with creams and blues and using the glass colored rocks. They should look nice. Oh, in case you're thinking I'm Miss Crafty - NOT. Just creative enough to have an idea - a very simple one - that is working. Square cut clear glass candle holders about 3 inches high and 3 inches in diameter. I put the rocks in net, tie with ribbon and top with some silk flowers. The holders can be put through the dishwasher and the net bags put right back in the holders! Simple, colorful and efficient!
After I got home, I went to our WM Supercenter. Had to do our grocery shopping which I didn't want to do 100 miles away. While I was there, I found a small set of walkie talkies for $10! Now you're probably wondering why. Well, I had a brainstorm. When I had my hysterectomy DH was spending a lot of time getting water out of the basement (lovingly known as the "Zaine Cave" because the sump pump didn't work without electricity so we had about 9 inches of standing water that had to be cleaned up. So we used the cell phones. I'm upstairs in bed and he's downstairs with the Shop Vac. He has one of those pay as you go cells because he doesn't use it much and that was kind of expensive for me to call him when I needed help. So the WT experiment at work gave me the idea. Why not use it as my call system for the next surgery. It's $10 which is less than what we spent buying phone cards for his phone the last 2 times after surgery. Probably have to find a channel for these as well!
Just wanted to respond to some of your comments:
jmberg: Yes, Rolla is just a short distance from Ft. Wood. For a change of pace, DH and I often take the 25 mile drive to St. Robert to visit the WM there! (Don't we lead exciting lives!) Different stores have different merchandise. Recently when my hot rollers died, our store did not have the set I prefer. I bought another brand and didn't like them. We were at the St. Robert store and they had them. Go figure. In 1988, we moved to Springfield for my job and so DH could go to grad school. We lived there 4 years and moved to Indiana in 1992 so he could go to grad school for his PhD at IU. That's where I ended up getting a job at a nursing home and the rest, as they say, is employment history. I got hooked and changed careers for good getting my administrator's training and license there before moving back to Missouri - Kansas City for 7 years, the StL for 4, now Rolla for 2. I think we're done moving for a while.
MoonMab: Heels? Goodness I don't know how anyone does it! Good luck with that! I used to wear pumps everyday to work. Then I went to flats and then I got a bone spur in both heels. It was horrible. After several trips to the podiatrist, I had to make a change. So for about 6 years now, I wear Birkenstocks everyday - either the sandals for casual wear or the loafer type for work. If I don't wear the Birks, I have Birk inserts for my sneakers and one pair of reliable black pumps. I also saw on your blog that you had a soft spot for the shelter animals. I'm not allowed to go to our local shelter because I want to take home every kittie. We have 3 but have had as many as 6! DH and I have agreed that we are downsizing our personal pet population! So we're not replacing when they go to kittie heaven. Glad the doggie got adopted. It breaks my heart to see the photos in the paper or when they have adopt a pet at the pet stores. Our management team used to volunteer at our local shelter once a month and help clean up. I just couldn't go because it made me sad and I wanted to take them all home.
BirkyLady: I wondered if you were fond of Birkenstocks! I was reading one of the other jounals and saw someone referenced her daughter and Birks. As you can see above, nothing goes on my feet but Birkenstocks in some form or fashion. My podiatrist at the time actually recommended trying them after he injected me with a huge needle into the heel! After I recovered from the treatment and the heel pain was gone, I've been wearing them ever since and no more foot problems! As for the date of the surgery, I don't suppose I'll have much time to worry about the history there. I can certainly see where your son could be bummed out about that. Sometimes you just have to go on. My youngest brother died 2 years ago at age 31 of a heart attack on March 18. My sister's b-day is March 17 and his birthday, as well as his son's (who was turning 5 that year), is March 27. We still had to have the little guy's birthday that year and it's tough every year for my sis on her day and our entire family on my nephew's b-day. You're right, it was your son's b-day first and he deserves to enjoy it. That doesn't make what happened any less tragic or sad. So my surgery will be just another day on my way to dry!
Well, going to run for now. I've been lazy enough today. It's cloudy and was a good day to sleep in and I did!
Have a spectacular week!
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Surgery is set
07-11-2007 - 08:45 PM
Everyone - THANK YOU so much for all your encouragement and support. I love reading your comments because I know many, if not all of you have "been there" and know what it's like. After I post an entry, I can't wait to get back in a day or two and see what you all have to say about thing.
I now have a surgery date - September 11. Didn't even think of the signficance of the date when we were setting up the surgery - but what the heck - in the grander scheme of things, it's just another day and it's going to be my lucky day. I am absolutely certain.
I'll have some preliminary tests done before the surgery and I won't have to be at the hospital until the morning of, so that should work out. I'm hoping to schedule the "pre-tests" the last week of August when I'm in St. Louis for 5 days for our annual health care convention. Hopefully I can do it on Thursday since that's a half day and I can buzz by the testing center on my way home. This thing may work out yet.
The next few weeks should be really busy as we make some changes at work. Our state inspectors are really getting picky about overhead paging and noise in the nursing facilities. So we are in the process of converting to a walkie talkie system. I feel absolutely silly using the things! In order for the things to work, I need about 20 for my staff - managers, nurses, aids! I bought 12 over the weekend (snagged a really great deal at WM for $24 a pair) and then after talking with our management team, we decided that we needed to give one to each of our nursing assistants, so I need 8-10 more. However, I bought all of the ones WM had here. So, I'm on my way to St. Louis on Saturday for my monthly pilgrimage to get my nails done. I guess I'll check out some of the WM's there.
Now, you are probably asking yourself, why would this crazy person drive to St. Louis once a month for a nail appointment? My only answer is vanity. I have horrible nails - they are paper thin, don't really grow except to curl up and then tear. Polish peels off no matter what kind I use. So, about 11 years ago, I started having acryllic nails done - sculptured because like polish, nail glue doesn't stick. When we relocated 2 years ago, I called every salon in about a 20 mile radius and no one does this service. They'll glue tips on all day long, but can't do pink and white sculptured acryllic. One person said she'd do it, but it would run around $75! NOT. So DH felt sorry for me and we made an agreement if I could go once a month instead of twice a month I could continue to use my same nail tech. So one Saturday a month, I go see Cissy. She charges me $30 and DH and I get to shop in the city - our little town doesn't have great shopping - only WM and Lowes. So we need to hit a mall every so often and maybe a Sam's. I know I complained about driving to the city for doctor's appointments and that seems kind of silly, doesn't it? But I've been combining trips. When I've had appointments in StL, I've tried to schedule my nail appointment after and make the most of the trips. So now you know my vanity!
So, I'll try to maintain normalcy for the next few weeks by staying busy and preparing for the next medical leave. I certainly hope that the days before the surgery will be less eventful than before my hysterectomy in January which was preceded by a 4 day power outage due to an ice storm. Oddly, other than the leak, I feel fine. Except that I am still noticing that I tire very easily. I used to have lots of energy and be able to go for hours without a break. Now I find myself needing to sit more often; coming home and having to lie down. A few times I've actually come home and taken a nap! I NEVER napped before. So I'm wondering just how long a full recovery takes and will mine be even longer now that I'm facing a third major surgery? Any thoughts? Despite everything, I do not regret my decision to have the hysterectomy.
Before the surgery, my director of nursing and I were on about the same cycle - starting within a day of each other usually. She's a few years younger than me and her gyn basically told her to suffer with the cramps. In January, right after my surgery, she called to check on me. She said how are you feeling? I said good considering I have this lovely incision and a catheter and so forth. She said, "Well, at least you don't have cramps!" We both had a good laugh. She has been a terrific friend, as well as a colleague - holding down the fort for the 8 weeks I was on leave. And she's helped me keep my sense of humor. The pain I had prior to the hysterectomy had become almost debilitating some days. Now she stops in the office at least once a month and says, "So, how ya feelin'? I usually say, "Leaky - you?" She says "Crampy - wanna trade?" And I always say, "Nope. I don't think so." I'm trying to convince her to see my gynecologist because her cycles seem to be getting worse and her gyn hasn't done any tests to see why. She has 2 teenage children and had a tubal ligation 15 years ago. I just don't think she should continue to suffer each month if it's not necessary.
Again, thanks to all. I appreciate all your support and encouragement. Hope you're all having a great summer. I'll keep you all posted on the process and all the craziness that is my life for next 8 weeks or so.
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There are options. . .
07-08-2007 - 09:29 PM
I have options. That may sound anticlimatic after all is said and done, but there it is.
After driving back into the city for a abdominal/pelvic CT on June 22, I was scheduled back with the doc for a fun cystoscope on June 27. Of course, I had been taking pyridium for 7 days and for whatever reason, it seemed to make the leak worse. So by the time I got to the appointment on Wednesday a.m., I was pouring lovely orange urine everywhere. I mean everywhere. It was so bad that before he could do the scope, he had to pack the vagina with an entire roll of Kerlix! Talk about embarassing! And when the packing was removed, I leaked about 6-8 ounces of urine just falling out into a beaker. It was truly horribly awful. And guess what? That's right, there's a hole in my bladder! Only this time, the doc isn't flippant about it.
After I finally got myself back together, Dr. B. came in to discuss those options I mentioned earlier. The hole is not where this type of hole is usually located. It appears to be further back on the bladder rather than toward the front, according to Dr. B and it is about 1 cm in size. For reference, that's about the size of your pinky nail - so that's pretty sizeable. At this point, there are two options for surgery - transabdominal or laprascopic. Given that I had the transvaginal procedure previously and there were some complications with that procedure, he doesn't think that we should go that way again. (He's actually read the surgical reports and is familiar with the procedure and what occurred!) With the abdominal procedure, I would be in hospital 2-3 days, catheter for 10-14 days and out of commission for 4-6 weeks - very similar to what I had with the hysterectomy. Or we can do the laprascopic procedure going through the navel, with two small incisions on either side and it would take about 4-5 hours vs. 1.5-2 hours with the abdominal surgery.
Of course, I've still got the dilemma of some obligations that I have to take care of in August and early September. So I asked if it was a problem to wait. Dr. B. says that waiting means more healing time and that is not a bad thing. However, it is a "quality of life" issue at this point - can I stand the situation until September? At this point, I don't see that I have a choice. Since I didn't plan on having to have 2 additional surgeries after the hysterectomy, this has been a particularly difficult year for me. So I have a million things going through my head. He gives me a card with his direct office number and the person I'm to call and set up the surgery - now -for September. My brain is flying and I can't get my mind working to think of questions. So I'm driving down the road and it hits me - we didn't discuss the details of the laprascopic procedure other than the time. You know, hospital time, recovery time, catheter time. I really can't decide which way to go until I know those details. So when I got to my office, I called and left a message for Dr. B's assistant to please call me as I had some questions. However, things got a little strange and for a couple of days I really didn't care if she called or not.
Until this year, I cannot recall going to the ER for anything except a minor car accident more than 10 years ago. Well, I'm breaking all kinds of records for me this year! As many of you may know, whenever a urologist does a cystoscope or some other such procedure, it is common for them to give you an antibiotic before the procedure. So, having taken levaquin on a number of occasions previously, including as recently as March, I didn't think anything of taking a 500 mg tablet that morning before the scope. When I awoke at 3 a.m. with chills and aches I simply put it off to DH having cranked the AC down to subzero (he hates to be hot) and added another layer of cover. However, when I got up Thursday morning I was splotchy red all over my face, neck and chest. I went on to work, but the hives got worse and I started running a fever. So I came home, took 3 Benadryl and went to sleep. I awoke at 3 p.m.with hives now down to my stomach, my lips swollen and my throat closing up! That was just a bit too scary for me. So off we go to the ER again. I had already figured out that I was having an allergic reaction to the levaquin - the only thing I had taken differently. But the ER doc confirmed it. After a high dose Benadryl injection and a steroid injection, I was sent home with instructions to take 2 Benadryl every 4 hours and to fill a steroid script and take as directed. Oh, and before I got better, the hives would probably work their way down to my feet! Isn't that just too special. Oh, and don't take any more levaquin - ever. No problem. Don't want to repeat that little episode. The hives finally all went away on Sunday!
So for several days, I was a bit distracted and didn't really notice that Dr. B's assistant hadn't called me back. So on Tuesday, July 3, I decided to call her again. To my surprise the young lady, Gail, answered the phone. I explained that I had some questions about the surgery options and I told her what they were. She thought maybe I should speak with the nurse. When she came back, she said that maybe it would be best if I spoke with Dr. B. Would it be all right if he called me back to discuss the questions. I said sure. She said don't be surprised if he calls you on the holiday because he's on call and will be working. Honestly, I didn't expect to hear from him. I thought the nurse would ask him the questions I had and she'd call me back. So when I didn't hear anything Wednesday, I didn't think much of it. And Thursday was busy at work and I knew that Dr. B isn't in the office on Thursday. However, around 6 p.m. Thursday evening, I get a call.
It's Gail and she has Dr. B can I hold? Sure. And there was Dr. B on the phone. What questions do I have? I explained that we didn't go into the details of the laprascopic procedure and I really need to know what's involved so I can make a decision. He went back over the abdominal procedure details. Then explained the laprascopic procedure would take 4-5 hours. There would be 1-2 days in the hospital, catheter for 10-14 days, but I would only be out of commision for about 3-4 weeks. The basic surgery once he was in, was essentially the same just the approach was different. Of course, there is always the risk that the surgery might have to be converted to the abdominal procedure if there were problems with the laprascopy. Which method has the higher success rate? The abdominal procedure is the tried and true method. The laprascopy has been successful with others. So I asked, "Given that there were problems with the transvaginal fistula repair and the fact that the hole is not where is was expected to be, which would you recommend?" Without hesitation, he said the abdominal procedure. And it's not going to be a problem if I wait until September. No, it's not a problem - it's a quality of life issue for me. Okay, then we schedule the abdominal procedure for the second week of September. Is there anything else he can answer for me? No, he's answered everything and I thanked him for taking the time to call and go over the options again. He said he would have Gail call me to set up the surgery. This conversation lasted about 25-30 minutes!
If I wasn't already impressed with this doc, I have to say I would be now for sure. This is a busy guy. He has a busy practice and he is an instructor at a major medical campus. Yet he took the time call me, to answer my questions and help me make a really difficult decision. With any luck, I'll be leak free by Halloween! That will be just a few days shy of when I finally decided it was time to do something about the painful menses a year ago and make an appointment with the gynecologist. Maybe by Christmas, I'll be dry. Wouldn't that be nice? He'll be going back through the hysterectomy incision, so I won't have 2 scars. I'm not thrilled about the catheter, but 14 days is a heck of a lot better than 4 weeks! So, as I expected, I'm a perfect candidate for the "last resort" invasive procedure. But I really think that it is the best option to fix the problem. So now I wait. Time will likely fly by with a commitment at the end of August for 5 days and then a 3 day commitment the weekend after Labor Day, I'll be busy right up until the day of surgery sometime the second week of September.
Well, that's it for this episode of "As the Bladder Drains." Thanks again to all for your words of encouragement and support. Hope you are all staying cool in the heat of summer.
(This entry has 7 member comments.)
No news may be good news. . .
06-23-2007 - 12:51 PM
Sometimes, not getting an exact answer may be a breath of fresh air. No, I'm not crazy, really. It's just that as you may recall, my first specialist appointment in late April turned out to be very frustrating and somewhat scary for me. I went for my second opinion on June 20 and while I don't know anything specifically, I feel as though I will very soon. Night and day difference in the approach, the bedside manner - everything.
My 3 p.m. appointment finally happened at 4:45. The waiting area was loaded and one person went to the desk and said they'd been waiting since 12:30 for a 1 p.m. appointment and it was 2:30! That didn't sound promising, but I brought a book to avoid the 2 year old US News and People magazines! The office staff was really nice and patient and actually got up to check on where the person was in the queue and then came back to tell them! I'm always interested in customer service and thought these folks should be applauded. They did a great job of keeping the mob at bay!
When the nurse brought me back, did the vitals, etc, she told me about the doc. "He has a tendency to talk really fast, so if there is something you don't get, just stop him and ask him to explain." Hmm, that's a bit different, but ok, I can work with it. Finally about 5 p.m., I meet the doc. He has obviously reviewed my records from Dr. K - lots of circles and notes in the margin. I had also brought the surgical reports from the hysterectomy and the VVF repair he requested and the actual pictures on disk of the cystogram and the pre-hysterectomy ultra sound. He reviewed the records with me - asking questions, clarifying what was in the progress notes from Dr. K and from the surgical reports. We walked through the entire process from TAH to present. He wanted to know about the leak. How it had changed from when it started to present, how many pads was I using then and how many now. The first "specialist" never asked - just assumed I was "back at square one." Conclusion: He wants to know more before he decides on a treatment plan. He ordered an abdominal-pelvic CT scan (had it done 6/22). He'll do a cystoscope and the "dye" test on Wednesday and then we'll discuss options.
Options!!!! Wow. Not just slicing me open and keeping in hospital for 5+ days and then a supra pubic catheter for 4-5 weeks. Options. What kind of options? Well, he has used transvaginal approaches - even after the first one I had in March - yes. He's used laprascopic procedures to repair fistulas. Really? Yes, really. Transabdominal approach is the last resort and most drastic option. Okay, when is it considered? When the size of the fistula requires that approach and he doesn't know enough about mine to make that determination. That's why he needs more information.
Okay, but I'm still convinced that a significant portion of the leakage I have is coming from the urethra. That's probably true, he says. Are you taking anything - Detrol, Ditropan? Not at this time. I explained Dr. K had started me on it but did not actually prescribe it since we thought we were doing an outpatient procedure in April. Then it was decided that I should consult a pelvic floor specialist, so it never got prescribed. I had asked the other specialist about it and you know how that went - call us when you're ready to let me cut you open. Since I'm bit leary of the "trols" after using the Oxytrol patch and becoming very sick to my stomach back in March (not sure if it was the Oxytrol or the stomach bug but it got better when I took the patch off), he prescribed Vesicare. He also wants to be absolutely sure that it is a VVF and not a uretero fistula, I'm now taking Pyridium in preparation for the test he's going to in the office on 6/27.
I still know nothing really. I fully expected to hear that the only way to fix the problem was to do the surgery as indicated by Dr. L. But not having any definite answer at this point certainly keeps the door open for the possibility of a different option. It has bothered me since April that Dr. L said the hole was more than twice the size Dr. K estimated it to be. As you may recall, I saw the actual hole on the television screen during the scope procedure at his office on my last visit and it did not look to be much bigger than a ballpoint pen - 1/2 cm or less. Dr. L told me it was at least 1 cm or so. Considering that initially the fistula measured 1 cm x 1.5 cm and I was pouring urine like water from a glass, I was skeptical of his sizing. If I still had that large a hole, I think I'd be leaking more copiously than I am. Ever since, I have held the belief that Dr. K could not be that off the mark because if he was, the second surgery was a complete bust and I don't think it was. Not 100% successful, maybe, but I'm definitely better than I was in late January when I couldn't stand up without flooding urine down my legs and soiling whatever I happened to be wearing. I don't carry an extra set of clothing and socks anymore and I'm not using 8-10 maximum (10-12 oz) incontinent pads and 4-5 disposable briefs a day as I was then because I was soaked all the time and had absolutely not control. I'm wearing a disposable brief during the day with a heavy (6-8 oz) pad just in case I have an accident at work and the same at night because I don't wont to ruin the mattress. I change pads maybe 1-2 times during the day - more for my own comfort than because it's soaked, once when I get home because I try to wear regular undies in the evening and 1 before bed that doesn't get changed until the next morning. That's a huge improvement over January and February!
So, oddly, knowing nothing is strangely positive. Dr. B wants to know more before proceeding, I'm okay with that. I'm not thrilled to have to drive the 100+ miles into the construction zone near the medical complex and fight city traffic with gas prices out the roof. But if it means I can be dry again, it's worth every penny. If I have to have the transabdominal surgery to fix the problem, so be it. At least I'll know that it's the best possible option for fixing the problem. The way my luck's been going, I'm almost certain that I'll fall into the "last resort" category! I'll just have to see how it goes next week.
Hysterectomy-wise, I feel good. I seem to be having no problems with the HRT. So that's really good. I do feel better on that front. However, I'm probably going to be first patient in my gynecologist's history who returns for a 1 year follow-up and has not had intercourse since before the initial surgery. Just can't fathom that with urine leaking from the vagina - yuk! Fortunately, DH is understanding and there is no pressure on his part. More on me - just not mentally there and likely won't be until this thing is fixed. DH thinks I should innocently ask Dr. H, "Oh, by the way, is it okay to have sex now that it's been a year?" as a joke! We've been together since we met in college in 1982 and married since 1986. Right now he's a great friend and support system, even if his sense of humor is a little warped! I may just do it to see the look on Dr. H's face!
So, "As the Bladder Drains" continues to be the soap opera of my life. Thanks again for letting me share the story with all of you.
(This entry has 5 member comments.)
I FINALLY made the appointment!
06-01-2007 - 10:40 PM
Goodness, it seems like forever since I've had time to sit down and peruse the site and make a journal entry. It has been really busy in my life during the month of May. There are two times a year in the nursing home business that are just incredibly chaotic and busy. One is the "Holiday" period between Thanksgiving and Christmas and the other is the month of May. Some bright person decided that May was a good month for so many things. In our business, we kick off the month with a celebration of National Nurses Week, usually the first week. This is followed closely by National Nursing Home Week which always begins on Mother's Day Sunday! For our facility that means a Mother's Day Tea and then some type of theme every day with special menus (cookouts, etc) and decorations. This year was no exception and we had a jam-packed week including taking 30 residents to a local camp for fishing and a picnic and a 60's day celebration with burger baskets and cherry cokes followed by real banana splits in boats! I was completely exhausted after 60's day on Monday and headed into the Hawaiian Luau on Tuesday telling myself I could survive four more days of exhaustion because our residents deserve to have some special fun.
Then we had Visitors. No, not aliens, but for us, just as scary! Our state inspectors strolled in about 11 a.m. on Tuesday for our annual licensure inspection - one month early! You may recall that our survey was the big reason I wouldn't commit to the surgery recommended by Dr. L in late April. I was thanking the heavens for my hormones as I was going in early and staying late Tuesday, Wednesday and Thursday, let me tell you. This is one of the most stressful times for any facility because you have inspectors looking over your shoulder while you're doing your job and our staff gets really nervous. I hope you all will forgive me for bragging, but I am so incredibly proud of my awesome staff - we had no deficiencies - ZERO, NADA!!! This is an amazing feat in our industry. Deficiency-free surveys are not commonplace. And remember, I was out for 8 weeks - half of January, all of February and half of March. So this group did an outstanding job of keeping the ship on course while I was gone. So I'm pretty thrilled.
I've also been busy with my extra-curricular activity working with our local chamber of commerce. I'm the membership chair and president elect, so this has also been a busy time here as well. Our membership directory is finally finished and printed - YEAH!!!
So what does all that have to do with anything? Well, it just means that I kept procrastinating making the appointment for the second specialist opinion. However, I finally had a few minutes last Tuesday and made the call. I already feel better about this one.
For starters, I called to make an appointment with a physician that was recommended by someone on the website. When I called, the intake person asked questions about my situation, my history and why I was calling, then recommended I see a different physician in the group who specializes in pelvic floor repair. She took down a lot of info and said she was sending the medical history for me to complete prior to coming in. And what a concept, they want to see my previous records!!!! They want the post op reports for the TAH, the bladder repair at the time of the TAH, the second fistula surgery, the pathology reports, the cystogram actual film (not just the report) AND the ultrasounds of my uterus, etc. that were done prior to the TAH!
So this week, I've spent making calls and running hither and yon to sign medical records releases to get copies of everything. I called Dr. K's office to have them fax my records from there. I spoke with one of the office staff who said they had just received payment from my insurance for one of my visits and the staff was wondering how I was doing since they had not heard from Dr. L's office about the consult. That was pretty amazing to me. It is customary for the referral physician to thank the referring physician and keep him/her apprised of what the course of care may be or whatever. It just seemed odd that Dr. L's office had yet to follow up with my referring physician more than 4 weeks after the appointment!
I am more and more convinced that getting this second opinion is the right thing to do. Either way, I will likely have surgery in the not too distant future. Will probably be in September after our big chamber festival the weekend after Labor Day. The things I get myself into! That way I can hopefully be back to work by the Thanksgiving-Christmas holiday season! Wouldn't want to miss the craziness that is carolers and Christmas shopping for 80 residents and the drama of getting our facility decorated - always a soap opera moment!
So, I'm heading to St. Louis on June 20. This physician is affiliated with one of 2 medical schools in St. Louis and a large teaching hospital. He is a professor of urology, and as I said, specializes in pelvic floor reconstruction. I have great hopes that he will have an alternative to 5 days in the hospital, reopening the abdominal incision and, of course, the catheter for 4 weeks!
As always, I'll keep you all posted. I very much appreciate the feedback from your comments. It's good to have some validation of your gut feelings, intuition, or whatever that feeling is that tells you when something just isn't right! Well, I'm headed off to check out some of your posts and some of the forums. Take care.
(This entry has 2 member comments.)
A second opinion . . .
05-03-2007 - 11:27 PM
Wanted to thank everyone who left comments for the moral support and encouragement - I appreciate it. While I have a number of friends and colleagues who have been very supportive, they really don't have any idea what this is like. But they do try to be understanding and I am appreciative of that.
The last few days have been really busy at work, but I've been doing a lot of thinking about all of this. I've finally decided that I do want to get another opinion. I'm sure I need surgery to fix the leak, but I really want to be sure that I need to have such an invasive procedure resulting in having a supra pubic catheter for 4 weeks and 4-5 additional weeks off work.
And you know, sometimes, things just don't feel right. For example, when it came to the TAH, I was completely comfortable with Dr. H. and making the decision to go forward. When the leak first materialized and I ended up spending a great deal of time with Dr. K and his staff, there was a trust there and I always felt that he was giving me the information to make sound decisions. When he told me that his confidence was waning after the second surgery wasn't completely successful, I still felt that he was honest with me about my options. I felt confident that I could make the right decision. When his office called and said he was referring me to a specialist, I thought, "Okay, this is the right thing for me."
Ever since last Wednesday, I haven't felt good about the outcome of that appointment. I've spent the ensuing days trying to decide if I'm letting that crazy screw up from the 18th cloud my judgment. Asking myself if I'm bitter because of what happened with the first appointment. I've replayed last week's appointment over and over. Something just doesn't feel right - I know that sounds hokey, but I don't know how to describe it. Here's where I'm coming from:
January 31, Dr. K determines that there is a fistula and we try non-surgical methods in hopes that it will resolve. The catheter strategy doesn't work so we proceed to surgery. First 3 weeks post surgery it appears that the surgery was successful. Then in the 4th week, we discover it wasn't. We consider other options, look at other possibilities and decide to proceed with the procedure. After consulting with other docs, he decides that maybe it is best to refer me to a pelvic floor specialist. Throughout, he has educated me on what is happening, what the second surgical procedure will be like. Drawn pictures illustrating how the Martius Flap procedure works and so forth. He answered my questions and treated me as an intelligent person capable of understanding what was happening, even though we don't necessarily know why it happened. I appreciated that because docs don't always treat patients as if they are capable of knowing anything. This doctor has spent a significant amount of time with me during appointments. He has made time for me when something happened like bloody urine or my catheter falling out or whatever panic was happening at the time. (I probably ought to write him a letter and let him know that I do appreciate his candor and his professionalism.)
Now, contrast that with the visit last week. I have tried to keep in mind that this was a first visit. I waited for a long time once they called me back. He spent about 2 minutes with me before deciding he needed to do the cystoscope, which I understand he needed to do. Then he tells me that I'll need to have the surgery that will require cutting me open, doing the repair, 3-5 days in the hospital and then 4 weeks with catheter and recovery. No other options or possibilities. Oh, I can't do the surgery at the earliest possible date in June? Well no problem. We can just wait because that's really better anyway. Then WHY say we should do it in June. If waiting is actually better and the preferred time frame is actually more like 6-8 months post surgery before the next surgery, why rush to do it only 3 months post surgery? I've done a lot of reading and the procedure he is proposing has better outcomes at 6-8 months and the success rate is increased significantly because things have had time to heal. Why not tell me that?
I very obviously was not in acute distress. I'm dealing with the problem. But I want it fixed. I don't think I conveyed an undue urgency to "get this over with" or anything. Then to have them say, "call us when you're ready" with no suggestions on anything that might improve the situation. I still feel that I have some OAB symptoms since I can feel the urine streaming from the urethra. My bladder is working somewhat normally in that I have urinary urgency, so might it not be helpful to try another course of Vesicare or some other med that might lessen the OAB symptoms. Maybe if the bladder wasn't working overtime, the hole might begin to heal some. Afterall, the whole reason for the catheter is so the bladder can relax and not work and the surgery can heal. I did mention that I am waking up frequently at night with urgency and what can only be bladder spasms because when this happens I'm up every 15-20 minutes, there's some actual discomfort and pressure. So by his own reasoning, wouldn't it possibly make sense to control that aspect of the problem and possibly give me some relief. I wrote all of this down on the extensive H&P questionnaire. Guess they didn't look at it or didn't think I knew my body, huh?
The more I thought about all this, the more I began to think I should get another opinion. Maybe Dr. L is just really decisive and that's that. But what if I'm being rushed into a really invasive procedure, one that will require reopening the TAH incision and extended hospital time? What if starting a bladder control medication could help with the volume, which seems to come more from the urethra most days than the vagina via fistula? Could be I have no idea what I'm talking about and I'm way off base, but what if adding the med made a difference and helped the fistula heal, which mcuh of the literature says can and does happen in some cases. It couldn't possibly hurt.
So, I called the insurance company today and asked what I had to do for a second opinion. Turns out all I have to do is make the appointment, pre-notify and go. It doesn't matter if the new doc does every test the previous doc did, that's it. Therefore, I'll be making an appointment with another specialist who was recommended by a Sister. I feel better just having made the decision to do this. I may get the exact same recommendation for treatment but at least I'll know. Also, I may actually like this doc better or at least feel better about it.
Just a note about another Sister from the Forum. She's been waiting for several months (maybe since October 2006 I think) to have her first VVF repair and I think it was yesterday. Send up a few good thoughts for her I'm sure she'd appreciate it.
Hope you all have a terrifc weekend. It's supposed to rain here in lovely central Missouri I think!
(This entry has 3 member comments.)
The Saga continues. . .
04-30-2007 - 09:21 PM
After the fiasco with my appointment on April 18, I finally made it into the specialist this past Wednesday in St. Louis. As you might guess, my frustration is ongoing and my news was not good.
I really didn't know what to expect from the appointment and so I left in plenty of time to give the staff the required 15 minutes. I actually got there around 2:15 for a 3 p.m. appointment. I was glad for the extra time as it the questionnaire seemed to be more detailed and expansive than others I've completed recently. Wehn I finished and took it to the desk, I offered the snippy receptionist the hard copies of my records from Dr. K's office. I explained that the office had faxed them a copy on April 11 and sent the copies with me to ensure there were no missing pages. I was a bit concerned when she said that they apparently did not receive them because "there's nothing in here," pointing to folder with my information in it. That did not bode well for the rest of the visit. So I waited for my turn to see the doc.
The nurse called me in and she was actually quite nice. A bit rushed, but nice. She said the doc was running behind, but would be right in. Of course, "right in" meant about a 20-25 minute wait. Finally, I got to meet Dr. L. who had, in fact, received the faxed documents and reviewed them and he had spoken with Dr. K and was at least somewhat familiar with my situation. As you might expect, he felt that he needed to do an exam which of course involved the use of a "scope." At this point, I'm really getting tired of having large objects inserted into a very narrow opening. Large tubes with lights and cameras are just really too big to be put there. Those darn things hurt and there is no amount of deep breathing or relaxing that can make it less painful and uncomfortable! What did he see, you may ask? Well, of coure there's a hole in my bladder! After the exam, he told me to dress and then we would talk.
He came back to tell me that he saw a hole in the bladder forming a fistula to the vagina. "I guess that puts you back at square one," he said. No, I said, not square one - maybe square five on a scale of 1-10. I explained that square one would mean that I had debilitating gushing of urine from the vagina with absolutely no control. So, despite the second surgery not being a complete success, it has allowed me to have some ability to function normally in my daily life. Prior to the March 2 surgery, I couldn't leave the house because the urine was pouring out of me uncontrollably. Dr. L. said that I "certainly seem to have a good attitude about this." He went on to say that urinary incontinence can have a very negative affect on quality of life. No kidding? Do you think so? I wasn't a smart aleck to the doc, but I sure thought it.
Many have commented on how well I'm handling this and that I don't seem to be at all down about it. Well, the fact is that I'm a very positive person and I just don't see spending my time crying hysterically, gnashing my teeth and wallowing in self-pity will accomplish anything. Have I cried? Yep, then moved on. Am I frustrated and angry that this is continuing? You bet. Would it make any difference to feel sorry for myself? Would it make my situation any better? No. So, I just have to keep going on as best I can and hope that eventually, this will all work out. But I digress.
Anyway, Dr. L explained that I would, as you may have guessed, need yet a third surgical procedue on my bladder to repair the hole. That was not unexpected. However, the extent of the procedure is what really got me. The procedure will require 3-5 days hospitlization. The TAH only required 2 days and they took stuff out! The recovery time will be 4-5 weeks because they will have to go back in through the TAH incision line. I am really not thrilled about that prospect. I've already used 8 weeks of my 12 weeks of FMLA time, leaving me only 4 weeks! Thank goodness for the 4 weeks of vacation that I rarely manage to use. Guess that won't be a problem this year. Oh, yeah, we can't even think to do the surgery until the first part of June - 3 full months past the last one. Which means, because of some work obligations, namely my annual inspection and follow up in, I won't be able to actually have this surgery until probably September! I told the doc that and he said, "That's fine. The longer you wait the better." WHAT???? He said this gives the first 2 surgeries time to fully heal. So in the meantime, I leak. Instructions? "Call us when you are ready to have the surgery."
I managed to keep it together through my 5 p.m. appointment and doing a few errands for my facility. When I finally got to my hotel around 8, I called DH. He was suitably outraged. Why do I have to wait so long. I explained about work and he understood that part. What he doesn't understand is why this is so difficult to fix. Frankly, I don't understand that either. By this time, I do break down and have a very angry cry with a few choice words. I felt better, but the tears didn't really solve anything.
So, I'm in in the waiting game. While I'm generally pretty positive, I'm not always really patient. So waiting is going to be really, really stressful for me. I'm giving serious consideration to getting another opinion before I have the surgery. I'm just sure I'm ready to blindly trust the new guy and I want to know if there is any othe option.
Well, hope I have been too much of a drama queen. Will keep all posted on the saga as it continues. Hope everyone has a great week. Take care.
(This entry has 3 member comments.)
And so it goes. . .
04-20-2007 - 09:12 PM
As I continue my journey through all this, I am constantly amazed at the variations in professional sensitivity shown by the staff at most physicians' offices.
Maybe it's a familiarity developed over the past few months that has made me really appreciate the folks at my uro office. I am apparently atypical of their usual fistula patient, therefore making my ongoing problem and the doc's attempts to fix it, something that every nurse and staff member has knowledge of - even the doc's wife (as I've mentioned before) - and a professional interest in. By all accounts, my TAH should have been routine with minimal to no complications. By choice, I have never been pregnant. I've never had any abdominal or pelvic injuries or surgeries or previous bladder problems. They've dealt with fistula patients before me. Many of them the result of hysterectomies or other surgeries. For whatever reason, these nurses and staff have been so sympathetic and compassionate and understanding when I've called with my myriad problems. They've put me at ease when I've leaked all over their exam table - "it's only urine, no big deal." I am continually embarrassed by it. They have been really wonderful to me.
So what brought this on, you might be wondering? Well, if you've been reading my entries, you know that I was supposed to see a pelvic floor specialist on April 18. I didn't make it to the appointment for a variety of reasons. 1) I couldn't take off the entire day because I had to be in my facility that morning to prepare for a district meeting to be held in the afternoon. 2) I have a new person in my admission office and guess who has to train her since the previous person's last day was Friday? 3) My business office manager had scheduled vacation prior to the appointment being made and I didn't have the heart to ask her to postpone it. We are a very small facility and often have to cover for each other - even me, the administrator will pick up extra tasks to cover - so I've been handling her a.m. report all week. So, I needed to be there. 4) Of course, getting out of there isn't always easy since everyone is trying to "catch" me before I leave. 5) Then there was the miscue with DH. For some reason, he thought the appointment was at 3 p.m. (it was at 2:30 p.m.) However, I didn't realize that when we were discussing what time we should leave for the 1.5 hour trip to the city. So. . . going with his schedule and me being a bit late getting away from work, we didn't hit the road until around 12:45 or so already feeling really rushed and knowing that I'd barely make it by 2:30. But it could be done since the office is right off the interstate as you get into the city. However, the reality is that we should have left about 12:15-12:30 to comfortably arrive on time. So some of the blame rests squarely with me in this.
Being a professional, I detest it when someone schedules an appointment and then shows up 15-30 minutes late without calling to let me know they are running late. So, I called the office and explained that I was coming from out of town and that I was going to be cutting it close for the 2:30, possibly even arriving about 15 minutes late. The receptionist was pretty snippy when she informed me that they "expected" the new patients to arrive at least 15 minutes early for appointments and that she didn't think it would be acceptable for me to arrive late. We're about half way to our destination at this point! Rather than put me on hold to ask the nurse, she kept the line open and had an unbelievably rude discussion with her regarding my situation. It seems, according to the nurse, whom I could hear quite clearly, that the doc is "double booked" and he has a "procedure" slated in the same 2:30 time slot and if I can't be there in 45 minutes, then I need to reschedule because I "should have planned to arrive 15 minutes early."
I tried to explain that during 2 different conversations with their office, no one indicated that I should arrive early. I specifically asked one person if they could send me the new patient forms so I could complete them and was told that it wouldn't take long when I got there, but at no time did she say come in early. I explained that my urologist had spoken with the doctor and his office had made the appointment, resulting in my having to rearrange my schedule and take time away from work to drive into the city. She very clearly didn't give a rip. So, rather than waste my breath, I rescheduled. They ONLY see new patients on Wednesdays I was informed. So, I rescheduled to April 25 - which would have been my choice had I made the appointment myself. I have a business meeting in St. Louis on April 26 and needed to be there the night before because the meeting starts at 9 a.m. Now wouldn't it make more sense to do the appointment the day before since I have to drive in for an overnight stay anyway?
So, I didn't see the specialist. However, based on my experience so far with his staff, I'm not looking forward to it! And I have to ask, WHAT THE HECK is all this "double booking?" I've heard that term frequently. My urologist in town does the same thing. However, it's never been an issue with his office. In fact, they have been great about working me in whenever I've called with the various problems following both surgeries. I don't understand the concept of "double booking appointments" but I guess it's the norm. But very frustrating for those of us who become the victim of it.
Of course I came home and just had a blubbering, feel sorry for myself, crying session. Then took a very long nap - too long since I was wide awake all night. I just feel so frustrated by all this that sometimes I want to scream. Overall, I FEEL physically fine. My strength is better every day - I don't get as tired as I did a month ago. I haven't had any problems related to the TAH - so that's good. My only complaint is that I seem to be having bladder spasms - especially in the middle of the night - which makes it very difficult to get comfortable in bed and I feel like I have to urinate every 5 minutes. So needless to say, I'm not sleeping. So I'm taking either the vicoden the doc presribed or an OTC p.m. pain reliever to try to relax and sleep. But I still don't feel sick! I just leak and it's annoying and uncomfortable being wet all the time. I'm sure many of you can relate to all this.
But back to my original thought regarding sensitivity. Little things do matter. And knowing that the person who is about to see you naked from the waist down has some professional compassion for your situation is at least comforting when you're in a very vulnerable position. I don't think I'll take it for granted in the future. We'll see if the new doc's staff is more likeable in person that over the phone. I surely hope so. Guess I should be open-minded, huh?
Well, until next week then. . .I plan to be at least 30 minutes early this time!
(This entry has 3 member comments.)
A break in the action
04-13-2007 - 08:18 PM
Hi everyone. Well, I've certainly had a strange week as you may have noticed. Since my surgery was cancelled on Thursday and a specialist appointment set for April 18, I had to make several schedule adjustments. My annual checkup was set for the 18th for my blood pressure follow up. So I ended up going to see my GP on Thursday instead. The appointment was for 3:45; they called and asked if I could come at 11:30 and then I waited over an hour because she was behind!
Anyway, I should backtrack and tell you that she was out of the loop on everything that has happened since January 17. Why you may ask? Well, no particular reason except I took matters into my own hands when I decided to see the gynecologist in November. Since about 2004, I may have mentioned that I had increasingly gotten worse with the cramping, clotting and bleeding. Every year, I told my GP/Internist about the problem. And ususally I was told that it was a part of getting older - nothing could really be done. Finally in 2005, my doc said I should probably see a gyn, but unfortunately, I was in the middle of relocating to a new nursing facility, buying a home, moving to a new town, so I didn't make it. In 2006, my current GP was more or less noncommital about the problem and didn't recommend seeing a gyn. So when I went in November, it was my decision.
To say that she was shocked is an understatement! We reviewed everything and she just shook her head. She was amazed at all I've been through and that I wasn't completely plowed under with depression and despair. What good would that do, I asked? She just laughed and said that all I had been through had had no negative effect on my BP, I'd officially lost 15 pounds and if my triglycerides have come down, and I was still in good spirits, what more could she ask????. We discussed my TAH - no problems. We discussed the VVF repair and she was thoughtful. She said she has known Dr. K for many years and frequently refers patients to him herself. She told me if he is recommending that I see a specialist it is because he believes it to be the best course, even though it may be frustrating for me and take longer.
Okay. Seems I am the ONLY person who was really bummed about the surgery being cancelled. Even DH seems to think this is for the best. I mean everyone - my entire management team - everyone! My business office coordinator actually jumped up and hugged me when I got off the phone after it was cancelled! I get that they care but they don't have any idea how annoying it is to be WET ALL the time! Morning, noon and night! Enough whining!
Anyway, on the way back to the office, I stopped off to pick up my records from Dr. K's office. I mentioned before that I was taking them to the specialist with me next week. The large envelope was sealed. I carried it into the office with me. I looked at it repeatedly throughout the afternoon. I carried it home and sat it on the dresser. Finally, after a phone call from a friend telling me her brother had died on Tuesday, and a lenghthy cry with her, I sat on the bed and just stared at the envelope across the room.
Then I just couldn't stand it any longer. There in black and white were the notes, treatment plans and observations of Dr. K and staff from my very first visit post op on January 25. Dr. K's notes are very thorough and detailed (I read a lot of physician progress notes when doing chart reviews at work, so I'm familiar with them in general.) As I went through, I noticed some things shuffled, probably from being faxed, so I put them in order. Then I get to the last few pages.
The post-operative reports from Dr. K's portion of the surgery on January 17 and the VVF repair on March 2. I just stopped cold. Did I want to read these? Did I really want to know if something sounded "off?" I knew I wouldn't find an outright admission that something went "wrong", but I thought I'd pick up something if there had been a problem. To be frank, I had considered requesting all the operative reports from the hospital and had decided against it. Many friends, family and acquaintances have asked the obvious question - is there something I should consider "suing" over?
Remember, I live and work in a small, community and I work with health care professionals - including both of the physicians I've been seeing - Dr. K and Dr. H (my gyn). I have residents who have had appointments with both of these guys! So, I'm not even considering ligitation - it would just be a professional nightmare. But. . . what if. . .I see something that makes the hair stand up on my neck? What if something just doesn't "feel" right or look right? I think that's why I had really avoided getting the records from the hospital. So, there it is. At least Dr. K's part of it. Do I read them or not?
What the heck, my curiosity is killing me anyway. I read them. And then I read them again. Nothing out of the ordinary. The procedures progressed as expected. The March 2 procedure seemed to have been hampered by the length of my vaginal vault and some difficulty keeping things positioned where it needed to be during the surgery. There's nothing there that would indicate a serious problem. So, you might say it was anti-climatic. But I'll say that it was kind of a relief. At least now I can be pretty certain that what is happening to me is simply because my body is not healing as it should. It's not anyone's fault and I doubt it could have been prevented. It all goes back to the fact that I'm a statistic - you know, "1 in 6 women who have a TAH will have a complication related to the bladder resulting in a VVF requiring mulitple surgeries to repair" or something to that effect.
Well, hope you all have a great weekend and that your "Friday the 13th" was uneventful! I'm calling it a night and plan to sleep late!
When "As the Bladder Drains" continues, I'll let you know "What's next?" after my specialist appointment on Wednesday. See you soon.
(This entry has 1 member comments.)
04-11-2007 - 11:30 PM
As you may recall, when we last visited, I had just received the hopeful news that there did not appear to be a leak from the vagina from the fistula repair and I was recovering from a very nasty stomach flu. Happy to say the flu ran its course and I was able to return to work on March 19, "abbreviated" days for 2 weeks, then full time after April 1.
Not sure if I mentioned this previously, but I'm pretty close to being a "workaholic." For sure, I'm NOT a morning person, so I really hit my stride around 10 or 11 a.m. and get my best work done between then and 7 p.m. usually. So prior to surgery, my days normally started around 8 a.m. and ended between 6 and 6:30 p.m., sometimes later because I just get so much more done in the afternoon. So working an "abbreviated" schedule means I'm leaving my office around 2-2:30 p.m. and going home to rest. Talk about tough. But I did it - except for a couple of days when things came up that I needed to stay and handle.
On one of those longer days, March 22, around 2 p.m., I noticed that I was having a pink colored discharge. It had not been on the pad earlier in the day. I also noticed just a slight cramping and the urine was really cloudy. I didn't get overly concerned at this point, but anything out of the ordinary is a flag for me given my recent history. I noticed some bits of stitching in the toilet - not unusual. I changed pads and waited. About 30 minutes later, I checked again and still had pink drainage and when I urinated, I felt something that felt like a semi-solid clump coming out when I urinated. There was light blood when I wiped and a grayish clump floating in the toilet.
I immediately called the urologist's office and asked to speak with a nurse. The person on the phone stated she was a nurse. I explained what was going on with the discharge. The nurse said, "Oh, I'm familiar with your case, I'm Dr. K___'s wife and we've discussed your situation at length. Let me discuss this him and I'll call you back and let you know what he wants to do." (You might recall from a previous entry, that my urologist had told me he had discussed my siuation with his wife who was a urology nurse, so that didn't seem unusual at all.) About 10 minutes later, she called me back and asked if I could come in and let them check for a UTI. So off I go - the office is only about 10-15 minutes from my office - and I made it well before the office closed at 4 p.m.
I immediately gave the specimen and after just a few minutes' wait, they called me back. The doc said there was no UTI and based on what was going on, the stitch pieces and the clump, he felt that the scab on the inside of the bladder may have loosened and been passed. That would account for the light bleeding. I explained that I was leaking from the urethra. (I was pretty sure because when I examined the incision with a mirror, I noted dripping coming from the urethra). I told him that if I was sitting or lying down, I could control my bladder for about an hour. However, when I stood up, I could feel myself leaking and it felt like I was urinating (with the vaginal leak, it just felt like drainage.) Also, after I emptied my bladder, as soon as I stood up, I'd feel a trickle, like the bladder didn't fully empty. We discussed the fact that at the heighth of the vaginal leaking I had no control of the leak and the amount of urine volume was significant. Judging from where the usual discharge was appearing on the pad and based on the fact that it was not a huge amount of discharge, he thought maybe I was experiencing overactive bladder. Afterall, if I was leaking from the vagina, I'd probably know it and I was pretty certain, at this point, that it was from the urethra. We discussed again that it would take some time for my bladder to get back to "normal" and that my urethra was probably somewhat weak from having the catheter for several weeks, off and on. So, he prescribed some medication, gave me a 2 week trial supply of Vesicare, and told me these meds can take up to 2 weeks to get into the system.
So I go home, to my afternoon ritual of lying down and making myself rest, and I started the medication. Within a couple of hours, the bloody drainage had stopped, as had the light cramping. By the next morning, things seemed back to my current "norm". Some days it seemed like the leak was lessening; other days it seemed to be more pronounced. After about a week, I started to feel more in control of my bladder function and could actually sit at my desk for 1-1.5 hours at a stretch and actually make it to the bathroom without having an accident. However, the leak did seem to still be there, but it didn't feel the same.
I don't know how to describe the difference, except to say that when I urinated, I could regulate the stream and I could feel the bladder pressure change. Occasionally, I would still feel this when I stood up, especially if I waited too long to go to the bathroom. But, now I was feeling like liquid was, for lack of a better term, plopping out, like a bubble was popping and the liquid inside was spilling out. I'm almost sure that I'm leaking from the vagina again. It's now the last week of March - my appointment is April 5. Several times between March 26 and my appointment, I considered inserting a tampon just to see if I was right. However, I just couldn't bring myself to do it. I was in denial that this could be happening again. I just didn't want to know at this point because it was too depressing to think about. So for the next week, I went through everything. Did I do something to cause the leak to re-form? What did I do differently, etc.? Then it occurred to me that possibly, the scab sloughing off may have been the turning point. I just didn't know. But deep down I was certain that I was leaking from the vagina and I just wasn't ready to face my worst nightmare yet. So I continued to take the Vesicare which ran out the day of my appointment.
April 5 finally arrived. My appointment is at 9:15 a.m. The nurse checks me in - the usual, vitals, etc. I tell her that when I urinate, I always leak as soon as I stand up - as if I'm having residual in the bladder. And of course I tell her that I am still leaking and it doesn't appear to be improving, even with the medication. She has me give her a urine sample and then she does a quick bladder scan to check on the residual. The doc arrives, asks about the leak. I tell him everything I can think of that might be pertinent. He says okay, let's check it out. He does a vaginal exam and says he sees urine at the back of the vaginal vault. But where is it coming from? The cystogram did not show any leaks 3 weeks prior, so he is baffled. Me? I already felt dread. He wants to check it out more thoroughly, so they set up some equipment.
Essentially, he's going to do a tampon/dye test to see if the leak is from the bladder or the ureter. But he also wants to see inside the bladder. Now, this is a fun procedure - not! The nurse inserts the tampon into the vagina and the doc inserts a small camera and light device into the urethra! Talk about painful and uncomfortable! Well, the 3 of us are watching my bladder in living color on the television screen. I can see a small amount of urine, the lining of the bladder and I remember thinking, it looks remarkably like the many color diagrams he has around the office. Then he shoots in some lovely blue dye and almost immediately, says, "do you see that?" Of course he's talking to his nurse, but I'm looking as well, and we all see the same thing. There at the bottom of the bladder, now in living color, namely, blue, is a very small opening. It's about the size of the end of a ball point pen. The blue dye is dripping from this very small opening. Out comes the camera - equally painful and uncomfortable coming out as it was going in. Out comes the tampon, now blue from the top half way down.
I know he is frustrated and I'm trying very hard not to cry. He says go ahead and dress and then we'll discuss options. I manage to wipe away the dye, get dressed, kind of in a daze and compose myself. He returns and says he's as frustrated as I am. Here are my options: do an out-patient procedure and "burn" the opening closed with a laser procedure or he can refer me to a physician that specializes in pelvic floor repair. He says his ego is not so huge that he wouldn't consider another doctor and would certainly understand if I chose to go to someone else. Afterall, he's operated now twice - once during the original TAH surgery and then the March 2 procedure. Again, I'm really an optimist at heart, so I tell him I'd rather do the OP procedure since the opening is so small and this should work. He tells me that I'll only have the catheter for 24 hours - he knows how much I hate the catheter and how much trouble I've had with it! All right, we'll set it up. However, in the meantime, he wants to confer with some of his colleagues who are pelvic floor repair specialists before doing the surgery. He explained that he wanted to be as sure as he could be that "burning" the area was the best course of action. So we planned to do the OP procedure on April 12.
We have had some pretty frank discussions over the past few months, my urologist and I. On at least two different occasions, he has stated that my situation has not been good for his confidence. I think he also told my husband this after the second surgery went for 4 hours instead of the 1.5 hours originally planned. Ordinarily, docs don't say things like that to their patients. On April 5, he said this for a third time. He just doesn't understand it. He has reviewed his surgery notes, his course of treatment - everything. He's discussed it in detail with several other urologists and feels that given the same set of circumstances, he would take the same course of action. He repairs fistulas of varying types all the time. In the last year, he estimates he's repaired 3-4 VVF's (not counting mine) in the past 12 months resulting from hysterectomies, "bladder tucks," and other surgeries - all with successful results. Why me? He simply does not know. I can tell that this really bothers him and is very defeating. As I may have mentioned, this guy is a well-respected urologist and surgeon. While our community is small, he is regionally well-known. We are within 90-100 miles of 3 larger communities with extensive medical services, including 2 major medical school communities with teaching hospitals. So the fact that he is so well-respected says a lot. However, my case seems to be defeating him. If I change my mind about going to the specialist, all I have to do is call him. He says he will not be upset, in fact, he would encourage me to do so if I have the slightest hesitation. I promise him I will give it serious thought.
It's now 2:50 p.m. on April 11 (today!). I'm busy getting things lined out to be out of the office for a couple of days. My cell phone rings and I notice it's Dr. K's office. Earlier, I had received a call from the surgery center notifying me that they were bumping my procedure an hour later. So when Chris said they were cancelling my surgery, I asked why, thinking that something else had happened. She stated that I was being referred to a specialist and she would give me a call back with details. About 30 minutes later, she called back. The specialist is in St. Louis and I'm scheduled for April 18. I asked if something has changed or if I needed to speak with the doc and she said he had reviewed the situation with the specialist and they agreed that we should hold off until I see the pelvic floor specialist. She states I am being referred due to "a recurring fistula." Since I know we haven't done any other diagnostics - cystograms and such - and the last thing we did was the dye test, I'm certain there is nothing else to be concerned about.
So, there we are. Now I wait. I called Zaine immediately upon receiving the info and the appointment date. He was incredulous that they would cancel the surgery at essentially the last minute. I reminded him that he had been muttering and mumbling about getting a second opinion since I went in on March 22. At that point he calmed down and decided that this was probably for the best.
I'm conflicted. I wanted this to be over and was looking forward to that being so on April 12. Not going to happen. I'll see someone new on April 18 and I feel like I'm starting all over. I'm comfortable with Dr. K. He's easy to talk to - no real "god complex," so you feel comfortable asking questions. I know what to expect from him and his staff. I'm taking a copy of my entire file which Chris asked me to pick up in case they didn't get the fax at the specialist's office. So, I know the new doc will have the entire history of the case. I just feel like I'm back to square one and it's depressing and frustrating and, quite frankly, extremely scary. After all, this all started with a routine TAH for an enlarged uterus and massive fibroids. So, I guess I'm really at square 2, since the TAH seems to have been successful and I'm having no problems from that end.
So, there you have it - up to the minute coverage of the soap opera ("As the Bladder Drains" that has become my life. The next episode finds me uncertainly anticipating my first visit with the dreaded specialist. Will the news be devastating? Will it be surgery? Tune in next week.... Okay, my brain is obviously going spastic and it's time for me to stop! I may not be writing again until next week after the visit. However, I will have a good portion of my clinical record from Dr. K. Should make for interesting reading. I may have more to share after perusing it.
Next week: What's next?
(This entry has 5 member comments.)
04-08-2007 - 09:46 PM
If it seems that I'm chronicling my experience as it happened, I suppose I am. Writing this all out as it happened has been very therapeutic for me to exorcise some of my frustration, fear and anger. As you might have guessed by now, the "fun" isn't over for me.
It's late afternoon on March 8 and I've just left the urologist office feeling cautiously positive. He has given me a transdermal patch, Oxytrol, to help calm my bladder spasms in preparation for a cystogram on Monday, March 12. His continuing instructions are to take it easy, stay off my feet as much as possible. So, it's back home and back to bed. At this point, my major source of discomfort is from the incision to the labia where the tissue was taken to support the bladder and provide an extra layer to seal the fistula repair. Since I can't get comfortable, I take a pain pill and go to sleep.
Around 11:45 p.m., I wake up with a very full bladder feeling as I haven't urinated in hours. But that isn't right. I have a catheter. I head to the bathroom. As I pull down the Depend, my catheter drops to the floor. I'm sitting on the toilet looking at this thing and I notice that the bulb looks like a balloon that burst. Again, with a surreal calm, recall thinking, isn't that interesting, I wonder how that happened. I carefully detach the tube from the large drain bag and attach it to the smaller, empty leg bag and place it in a plastic bag. I change the Depend and the pad, get dressed and go to the basement door and yell down into the "cave" for hubby. After a brief explanation and trying to answer his 20 questions about what happened, we finally head to the ER.
You know the drill at the ER - registration, sit and wait, triage nurse, sit and wait. Finally they call you back. The male nurse, Jason, comes in, gets the scoop on what happened. The ER doc pops in, asks a few cursory questions, feels my abdomen and leaves me in the hands of Jason. Do I have a problem with him re-inserting the catheter? No, not really. I've had so many folks doing things to me down there, I'm beyond embarassment, but I am very sore and swollen due to the recent surgery. He takes a look at my catheter, gets the size and comes back with a regular foley. I hate to be a know-it-all patient, but I have to stop him. The urologist specifically wanted the Couday (I finally looked up how to spell that word - aren't you happy!) catheter. Of course they don't have those routinely in the ER, so I have to wait about 45 minutes for them to get one from central supply. Finally, Jason re-inserts the catheter (and was very gentle and efficient) and we leave the ER around 2 a.m.
If you're counting, that's the second catheter that has just simply dropped out. Remember one dropped out right before I left the hospital the previous Sunday. So, I'm back home and suddenly very queasy. At the ER there had been a really sick college student vomiting like crazy while we were waiting. But I didn't think I'd had time to pick up his germs. Now that I thought about it, I'd been feeling nauseated before the ER visit and hadn't eaten anything since before I went to the doctor earlier in the day. Within 30 minutes of returning home, I was in the bathroom, vomiting and having dry heaves since I hadn't eaten. I didn't get much rest through the night and I kept trying to figure out what I'd done differently and it hit me - the patch! I pulled out the patient info flyer and, of course, top of the adverse reaction list - nausea and vomiting. So I pulled it off around 8 a.m. and was queasy for a few more hours, but it finally seemed to pass and I got some sleep. I didn't call the doc about the catheter coming out and nothing out of the ordinary occurred on Saturday.
Then there was Sunday. I finally woke up feeling somewhat better and got up to sit for a bit. Zaine and I had a light lunch while watching college basketball. Just before half-time, I felt a popping sting (like a rubber band) and heard a loud "pop". He looked over at me and said, "What was that?" I told him I thought my catheter had just popped again. So, at a quarter of 2 p.m., we head to the ER again. It doesn't appear all that busy and they take me back right away, skipping triage and all that. The nurse comes in, does the triage vitals and such, gets the info about what happened and says someone will be right with me.
About an hour later, Jim, the ER Liaison, tells me that I've been bumped due to chest pains. Okay. For some reason, I had grabbed a book on the way out ofthe house and I was occupied. At about 4 p.m., it looked like the wait was going to be really long, so I told Zaine to go home. He had been in the middle of a project and it was silly for us both to be wasting time doing nothing. I told him I'd call him when I was ready. (We live about 2 minutes from the hospital!)
So I sit in a treatment room watching person after person who came in after me leave. Jim keeps me informed that there is a terrible stomach flu (I remember the college kid from Thursday night's visit) and that there are a lot of dehydration cases that require attention. He's sorry, but I'm behind chest pain times 2 or 3 people and several folks with vomiting and diarrhea. Around 5 p.m., my nurse, Karen, who has been in and out, leaves for her lunch hour. She is in shock when she returns at 6 p.m. and I'm still sitting there, unseen by a physician! Both she and Jim are embarassed that they keep having to make excuses as to why I'm waiting. Finally around 7 p.m. - yes, more than 5 hours later - the doc comes in. I have to spend 10 minutes giving her the history from the TAH on January 17 to the surgery on March 2 and the current issue with the catheter. Karen had already called up for the Couday since I'd explained the problem from the previous visit, so it was ready. Finally the doc re-inserts the catheter, only inflates the bulb with 7ccs instead of the usual 10ccs and at 7:30, I called hubby to retrieve me. Very tired, I went straight to bed, only to wake up about an hour or so later vomiting. No patch this time, just a good dose of all those stomach flu germs I breathed. So I'm up for most of the night throwing up 7-up and cranapple juice.
Now, has anyone recalled that I have a cystogram scheduled for Monday at 7:30? That's right, I drag myself to the shower and off we go to the hospital for the test. I'm still nauseous as heck, but not throwing up at the moment. The radiology girls have me change into the lovely hospital gown and are quite pleased to learn I already have a catheter. The cystogram consists of injecting about 750-1000 ml of contrast dye liquid into the bladder and taking a series of pictures to determine if there is leaking. In my case, we wanted to know if urine was leaking from the bladder into the vagina. I left radiology with a basin and wet washcloths having been really sick after the test was over.
On the way home, I called my urologist's office and asked if there was any way he could call in something for nausea and vomiting. I also explained that the catheter had come out the day before. We had just gotten home when his nurse called. Could I come in and let him take a look? Sure, I only live about 5 minutes from his office. The nurse called in something for the nausea and while I was being checked in, the uro called the radiologist. Did he have my test results? Some conversation between them. And I hear him say, "Are you sure? Can you send them over?"
My heart sank. He came in the room and he looked totally defeated. The plan had been to do the cystogram, if there were no leaks, remove the catheter the next day. He says that he doesn't want me to panic. The radiologist said he sees a leak, but he wants to look at them himself before he says for sure. We'll leave the catheter in for another week. He's going to the hospital in the afternoon and he will look at my results himself. He felt that the radiologist may have been somewhat confused about what he was seeing. Try not to panic, he says, "You will be dry again." So I make an appointment for next week. I make it to the car before I completely breakdown and burst into tears. Zaine is angry and frustrated - why can't this be fixed? Do we need to go to someone else? His anger just makes my own frustration worse. He drops me off at home so I can go to bed. By this time, I'm sure I've got the lovely stomach flu and I'm depressed and miserable and I just want to escape into sleep. He goes to the pharmacy to pick up the nausea script. when he returns, I take one of the pills which makes me sleep.
From a sound sleep, I feel a stinging pop in my abdomen and hear a "popping" sound. I am instantly awake. It's five minutes until 2 p.m. I have the uro office programmed into my cell phone, so I called them up. I spoke with one of the nurses and explained that my catheter had just popped again. In case you've lost count, that's 3 times since Thursday night - twice in 24-hours! She puts me on hold, comes back to say the doc is in the office and wants me to come in, can I do that? Sure, so off we go, with Zaine even angrier than he was earlier. He thinks this is my body rejecting the catheter because it doesn't need it anymore. And me, I'm just worried and scared that something else really bad is happening.
My doc has looked at the cystogram results while he was at the hospital. He has them on his computer. We go into his office - the doc, myself and his nurse practitioner - and he calls them up. Sitting in his chair, I look at the screen. He says he doesn't see a leak - do I see there is no dye showing up between the bladder and the vagina? Yes, I see that. There is a good separation between them and no contrast dye which means no leak from bladder to vagina. He decides not to re-insert the catheter. He tells me that it may take some time for my bladder to return to normal because it has had a lot of trauma and it has had a catheter now for 5 of the past 8 weeks! I can expect some incontinence, but this should be from the urethra and it is to be expected. He'll see me in 3 weeks and if I'm still leaking, we'll consider medication to help me regain control. I can help matters if I begin doing Kegel exercises and such to re-educate those pelvic muscles and help the urethra get back to normal.
I'm ready to kiss him. When can I return to work? He says if I didn't have the stomach flu, tomorrow! However, since he was sure I didn't want to give the bug to my NH residents, that I should wait until the following Monday. He says I should do part-time days for the first 2 weeks then I can resume full duty. I make the 3 week appointment for April 5. Other than feeling really lousy due to the stomach flu, I was thrilled. No more catheter. No more fistula leak. I'm on my way back to normal and back to dry. I'm feeling pretty positive about that the end of the ordeal is in sight.
Next up: Still leaking.
(This entry has 4 member comments.)
The Second Surgery
04-07-2007 - 07:43 PM
I'm on a roll, and I've got the energy, so I'll go ahead with the Second Surgery installment!
It's now March 2, exactly 6 weeks and 1 day post TAH. I've arrived at the hospital ambulatory surgery center as instructed for pre-surgery registration and prep. This doesn't take long and I'm taken back to a room. To this point, things are going smoothly and quickly.
You know sometimes, you could wish for more intuition. When little things start to go wrong, one should have a big, loud warning bell, that maybe we should just stop. No such luck for me.
The first thing that should have rung the bell, the nursing assistant says she needs a urine specimen. That's just comical. Remember, at this point, I have no regular urge to urinate because my bladder is constantly draining through the vagina - so no way am I going to be able to actually "pee on cue" into a cup using the "midstream clean catch technique." My only hope is to get the cup down there fast enough to catch the urine as it falls freely out. I manage to get about 1/3 of an inch in the cup. Unlike the doctor's office which usually has a ledge to set the specimen cup on, the toilet room between the pre-surgery rooms does not. So I sat the thing on the floor. Unfortunately, I forgot I had on a lovely hospital gown - not secured and when I stood up, the gown swished into the cup and it spilled. That should have been bell number 2.
Now, it's about 12 p.m. and I've been NPO except for a couple ounces of water to swallow my blood pressure meds as instructed, so the urine flow is not quite as copius as usual. It takes me another 5-10 minutes to dribble about 1/4 inch of urine into the cup. For me, this is laughable considering that until that moment, I had been dripping non-stop since January 31 and now I can't even drip enough for a sample! The poor aid assures me she thinks it will be enough. Next comes the lab tech for the bloodwork. For some reason, the urologist didn't have me do all this prior to the surgery date - he wanted it done that day. So be it. The lab tech begins looking for a vein. I helpfully pointed out where every other lab tech usually finds blood. However, she thinks she "feels" a good one on the inside of my left arm. Stick. Wiggle. Pull back a bit. Push back in. She's not getting much in the tube, so she continues dig around while I'm about to pass out. Finally, she decides the quarter of a tube she has will just have to do for the CBC. Still counting, this is warning bell number 3!
I'm still a little queasy at this point from the vampire girl missing the mark and in comes the I.V. nurse. Did I mention that I absolutely do not like needles and especially I.V.s? Which hand? I'm right-handed, so I asked her to use the left. Once again, I'm in danger of passing out because this procedure hurts like heck despite the litacaine and seems to be taking a long time to finish. I remembered that just a few weeks back before the TAH, the I.V. had been a snap to get started. Why so much trouble this time? Warning bell number 4.
The anesthesologist arrives, asks the standard questions. I explain that I have a history of reacting to anesthesia - violent vomiting and nausea. The guy who did the TAH gave me a patch and I did not have any problems. Great, he'll be back with one and I'm good to go. I get the patch and feel better since I really hate to throw up - ever. The nurse came in and explained that my doc was running late, (it's now about 12:25 p.m.) She puts his ETA at about 1 p.m. In the meantime, I'm to relax. Right. The gurney bed is not so comfy, it's really hot in the room (and everyone keeps trying to cover me up with heavy blankets) and great, my hubby (Zaine), who gets frequent headaches is getting a monster. He decided that he'd wait to have lunch until after I got into surgery, so he's getting a low blood sugar brain ache. There must be 20 kids in the OP surgery center for ear tubes or whatever and ALL of them are whiny and miserable and for the most part screaming. This isn't helping the headache and now I'm getting one too! The nurse stops in to chat, we determine where a vending machine is and about the time he's going to dart out for chocolate (his drug of choice), in comes the uro at about 12:40 p.m. Do we have any questions? No. The surgery should take 1.5 hours or so, about 1-2 hours in recovery and then we're on our way. Off I go to the shiny OR.
The next thing I remember is waking up and seeing this man in scrubs with a chart sitting beside the bed. The room is a deep mauve color and there's a clock on the wall. I try very hard to focus on the clock. It says 7:50. That can't be right. I went in before 1 p.m., surgery should have been over at 3 p.m. at the latest, it should be no more than 5 p.m. There is no one else in this room but me and this guy. He sees I'm awake. He's a surgical recovery nurse. I ask him where I am and he tells me that I was moved from the regular recovery room to a PCU bed because the surgery center closed at 6 p.m. I now notice, I'm still hooked up to various monitors and I have a nasal canula for oxygen - I don't remember even having O2 when I had the TAH. Now I know, I'm still pretty out of it, but the 5th huge warning bell is clanging in my head.
Mr. Nurse says now that I'm awake and stable, they can move me upstairs. Wait a minute. I say, that can't be right, this was an out-patient procedure, I'm supposed to go home. Where's my husband? Oh, he's in the waiting area, we'll get him. In the meantime, he checks the chart and says, no, we've got orders to admit to the med-surg floor. He explains that the surgery took longer than expected and that the doc wants to admit me. Off I go to the med surg floor. My poor hubby looks awful. He has gone home during the recovery, thrown my robe and slippers, and the book I've been reading in a bag and returned to wait. He rides up to the room with me, stores my things, hands me my cell phone and says he has to go home - he's wiped out. I say go, all I'm going to do is sleep. I'll call you in the a.m. He leaves. It's been a long and unexpectedly not so great day at this point.
The nurses then come in to check me out, get me comfy, etc. It's now about 8:45 p.m. There's a clock directly in front of my bed. I doze off and sleep for a bit. I vaguely hear the nurses and aids checking me out. There's no one in the next bed, so it's quiet. (I had a very annoying roommate post TAH and she was constantly on the call light which meant someone was constantly in and out!) About 10:30 or so, I wake up with this incredible pressure in my abdomen. It feels like my bladder is full and I need urinate. I spend about 5 minutes conversing with myself - this isn't right, I have a catheter, I just think I need to go. Then, no, that's really discomfort/pain. I turn on the light and tell the nurse. She comes down and checks the catheter bag and notices that I've had almost NO output since she checked it around 9:30. She checks the catheter tubing and jiggles it a bit, still nothing. She gets another RN. They both appear concerned that maybe the catheter is occluded (blocked). My nurse says she's going to call the doc to get an order to flush the catheter. She comes back about 15 minutes later with all the items to flush it. After about 3 tries, nothing, so she calls in reinforcements again. The two nurses talk quietly about having to apply more pressure and decide that's the ticket. They tell me that this will likely hurt but it has to be done. At this point, I feel like I'm about to explode. I tell them okay. They do their thing and yep, it hurts like heck. But out gushes bloody urine and drainage. The bag fills up and they empty the bag. By the time they get back, the bag is already half full again. Things seem to be okay now, flowing as they should, so they ask if I want something for pain and I agree. Unfortunately, it's I.V. morphine because I still can't have anything PO.
I.V. morphine burns like crazy going in, but it does work quickly. So I finally get somewhat comfortable and go to sleep.
7:30 Saturday a.m. I'm wide awake. I ask for help brushing my teeth and washing my face. Still NPO, so I'm only getting ice chips. The aid helps me get my book so I can read as there is nothing on TV. I doze for about an hour, call my husband. This is when I finally find out why I'm in the hospital and not at home. My quick, simple 1.5 hour OP procedure apparently turned into a 4 hour surgical procedure. According to hubby, the doc explained that the fistula was very large and deep and he had difficulty getting it closed up. Well, that explained that.
Around 10 a.m., my uro came in to check. He asked how I was and I asked when I could leave. He checked the catheter, checked the drain thing and removed about 3 feet of gauze from my vagina! He told me that the fistula was larger and deeper than expected, so that took some time. However, he said that the length of my vagina also proved to be a problem. He stated that it was longer than expected and made everything harder to reach. Who knew?? I told him I still felt like my bladder was very full. He went to the nursing station, checked the chart and came back to say that I'd had about 5000 ml of output due to the I.V. and he was stopping that. No, he wasn't going to release me, he thought maybe I should stay one more night so they could monitor. Everything looked good, but he wanted to keep an eye on things. He said I should try to get up and walk some. That would help and it would also get things back on track. Okay, so I resigned myself to being there one more night.
Hubby came by for a while. I'm not great company because I don't really want to be there and I'm uncomfortable. I tell him to go home, I'm going to ask for a pain med and sleep, then maybe try to walk later. He is relieved that I don't want him to sit there and watch me sleep. I read for a bit, take the morphine again and sleep. Around 5:30, they bring me food - a huge meal of baked chicken, potatoes, salad, roll, etc. I pick at the potatoes and eat the roll. After dinner, I ask if they can help me get my robe and slippers and let me walk. Surprisingly, it feels good to be almost upright. Walking is slow, but it feels ok. I go past the nursing station about 15 feet and turn back. Almost to my room, I feel urine leaking down my legs. By the time I got back to my room, urine is pouring and I'm in a complete panic. The aid gets my nurse. They help me get cleaned up and into a dry gown and once I'm back, the nurse check me out. It's still coming. She goes to the call the doc. Meanwhile, I'm trying desperately not to become hysterical. About an hour later, my uro arrives. He checks me out thoroughly. Says he doesn't see anything leaking from the vagina. Thinks that this is likely a bladder spasm that leaked around the catheter when I was walking. He says no more walking, he'll see me in the a.m. He finally gives me a PO pain med instead the morphine and I sleep.
The next morning, about 9 a.m., he's back because he wanted to check on me before going to church. He joked about asking for "divine intervention." I said whatever it takes! He says he's discussed my situation with his wife. I'm thinking that must have been an interesting conversation. He explained that his wife is a nurse who has worked with urologists for many years, in fact he tells me that they met over another man's penis. I remember thinking that this was a very strange conversation for a Sunday morning! Anyway, after this discussion with his wife, he thinks that maybe the tip of the catheter is hitting the suture line. He wants to change the type of catheter to something called a Kuday (sp?). After the catheter is switched out, I can go home. He gives the order to the nurse and I call hubby. The nurse comes in and attempts to insert the new cath. Lots of swelling in the area and she has some problems. Finally, she thinks she has it in and she is getting urine output. Good, I can go home.
The aid comes in to help me dress. I stand up and start to put my lovely Depend undergarment on for the trip home and the catheter falls out on the floor. They get another one, and 2 nurses try to get this thing in with no success. After several attempts, I'm in tears because the pain is so bad. They decide to page the doc. He shows up about 12:30 p.m. and gets the catheter in. His instructions are to stay in bed as much as possible - not be up and walking unless necessary. Okay, I can do that.
Hubby arrives and off we go to the homefront. I immediately take a pain pill and crash. I sleep for most of the day and night. My plan is to stay in bed as much as possible because I want this to heal and be over and done. He agrees. He's become quite adept at emptying my catheter bag and keeping track of output. He is great at making sure I'm eating and brings me my meal of choice - chicken noodle soup - in bed. I had no appetite after the TAH and I still don't have much of one. I have a follow up with the uro on March 8.
March 8 rolls around and off we go to the doc. How do I feel? Okay. What is my output like? 700-800 ml every 5-6 hours. Much better than previously. I tell him I'm leaking. Is it from the vagina? I don't think so, appears to be from around the urethra. That could be from bladder spasms. He wants to do a cystogram to see if there are any leaks from the surgery site. We set this up for Monday - it's now Thursday - and I'll see him on Tuesday following. He wants me to have a fully relaxed bladder, so he gives me a patch for OB called Oxytrol. I'm very positive when I leave. Things appear to be good and progressing well.
However, remember all those warning bells? They will be ringing loudly again very soon.
Coming soon: What now?????
(This entry has 2 member comments.)
The Great Leak
04-07-2007 - 04:54 PM
Sorry it's taken a while for this entry. I've returned to work at full duty and I've been crashing almost as soon as I get home from exhaustion. I've had this part of the saga in my head for a while but needed the energy to write it. I know you've waited with bated breath! Here goes.
Well, it's now January 31, exactly 14 days post TAH, around 10 p.m. I've been sitting up some because I was tired of being in bed, but it's time to head back there. I have a 2 week follow-up with my gyn at 10 a.m. and showering is sill a major energy draining ordeal so I'll need to give myself time to recoup post shower in the morning before actually heading out. I stand up and the flood gates open. I had felt this before the TAH when I would sometimes stand up and gush blood while on my period. My first thought was, that's feels like a lot of blood. The day before, I'd gone to the bathroom and had some blood which I put off to post op, but this felt like much more than that. With a kind of surreal calm and a fluid substance dripping down my legs, I made my way to the bathroom. Much to my surprise, no blood, just urine - yet I had had NO urge to urinate prior to standing up. I sat there with urine dripping but I could not stop the flow. Something wasn't right.
I remembered the conversation with the urologist when he removed the catheter the week before. Something to the effect that the repair that had been made during the surgery should prevent urine from draining into the vagina. Hmm? Knowing I probably shouldn't, but desperate, I found a tampon and inserted it for about 60 seconds. It was soaked and dripping upon removal. Having only prepared for some post op bleeding, the only pads I had on hand were regular maxi pads. So I spent the next 10 or so hours soaking wet, running to the toilet every 20-30 minutes. Finally, it was morning and I got to my appointment after sending my husband to get some incontinent pads so I could hopefully get to the doc and not be completely soaked.
Upon arriving at the gyn office, they got me right in. I told the nurse I'd been leaking urine from the vagina for about 12 hours. She had me undress and I heard her outside the room telling the doc. He came rushing in, did a quick check and said he had a call out to the urologist. A few minutes later, he spoke with the uro and came back. Off we went to the uro office about an hour later. Of course the urologist also had to check things out and he was calm, but concerned. As I sat there on his table dripping, he explained that the accepted treatment at this stage for the VVF is to try and let it heal on its own. So in goes the foley catheter - for 2 weeks! This is simply to let the bladder heal and hope that the vesicovaginal fistula will close on its own. The urine is still going to drain from the vagina, but the plan is that it will lessen and heal.
I was down, but optimistic that things would be okay. I'm never sick - not even the flu. Generally bounce back quickly when I do have an ailment and overall am pretty healthy. The TAH was only my third ever surgery (a tonsilectomy at age 9 and the tubal at 33). And I work in healthcare, so I'm pretty positive about the skill of physicians and surgeons. I'm not panicking just yet.
So, for 2 weeks, I have the foley with a leg bag and I'm draining what feels like gallons of urine from the vagina. Not much output into the leg bag, maybe 200 ml every 5-6 hours. I've stepped up to Depend undergarments with maximum duty incontinence pads combined and I'm still wet all the time. I go back at 2 weeks, knowing that I won't get good news because I appear to be draining both from the vagina and now around the catheter from the urethra. And I was right. The VVF actually has gotten larger, not smaller. So out comes the catheter. And the new strategy is to wait until the 6-week mark and do the surgical repair of the VVF. He assures me that it is a simple outpatient procedure and that I'll have the catheter another for 2 weeks and be good to go. He's even optimistic that I can return to work, if I don't mind the catheter, on March 12.
At this point, the panic has begun to set in. I'm holding it together, just barely as I leave the office. My husband doesn't handle emotion really well, so I'm trying to be very strong and not breakdown. Finally, we're home, he goes back to his "cave" (his office/computer set up in our basement) and I go to the bedroom. I have about a 15 minute panic attack and tearfest and prayer session. Then I settle in to be wet and uncontrollably uncomfortable for the next 2 weeks. I have to call my supervisor and explain that I will be having a second surgical procedure and won't be able to return to work as planned on March 5 as I will have surgery on March 2. He is understanding, but we have to make some arrangements due to regulations for my nursing home, since I'm not going to be able to be back as scheduled. That done, I try to just rest.
As I said, I work in a nursing home - I'm the administrator. I've worked in nursing homes for the past 15 years. I've been around incontinent residents and have always been sympathetic to their plight. However, thanks to a VVF, I'm now extremely empathetic to what they go through every day. I will never take continence for granted again! I packed what I called an "adult diaper bag" complete with Depends, pads, wet wipes and a change of clothes. At this point, it goes everywhere I go because during this time, I've had accidents just sitting in the chair and standing up. Only, I don't really go out except to the doctor's office and only then because I was in agony from the caustic nature of the urine on my skin. They gave me some ointment which really helped. That was about a week after the catheter removal. My next adventure was for my 6 week post TAH check up on March 1, the day before my surgery.
Of course, I'm still leaking and I explain this to the nurse. She's not my gyn's regular nurse, she's new. So I have to start at the beginning. I have to ask for a chuck pad since he wants to do a vaginal exam. She gives me an extra folded up paper cover. My doc, who is just great, comes in, makes the exam really quick because urine is pouring out of me. He goes over the path report (nothing there, thank goodness) and tells me I'm now fully released as far as he's concerned. I've healed really well from the TAH and things look great. I can now drive, lift if I'm careful and know my limits, have sex. At that point I laughed and told him that really wasn't on the agenda at the moment. He assured me that eventually I'd be okay and I'd want to have sex again. He explained how things were since removing the cervix and doing the surgery and said I should have normal orgasms and such. We discussed the VVF surgery and he was very positive - saying that the urologist is very experienced and well-respected. Of course, I knew this because I'd done research, spoken with my facility medical director and several other folks - he is considered top notch. He wished me luck, and said he'd keep in touch with the uro regarding my case.
After he left, as I stood up, I was mortified. He has these very spiffy exam chairs that convert to an exam table when he presses a pedal. Under the chair was a large puddle of urine. The paper cover was ineffective. I'm soaked, the paper is soaked and urine has drained all under the chair! So it takes me 15 minutes to clean myself up, get dressed and then try to at least clean up the mess I've made. I was practically in tears as I left, I was so embarassed! I apologized to the staff because they were going to have to deep clean the chair, the floor, everything. Just awful. I hope they will have forgotten the mess by the time I go back for my regular check up!
Well, were it not for the VVF, I'd feel great and I'd be returning to work on Monday. However, instead, I've got to get my brain psyched for surgery on Friday. It takes some self-motivating pep talks - I hate needles, despise being hooked to an I.V. and I'm frankly not looking forward to 2 more weeks with a catheter. I'm tired of being at home and I'm BORED. I've read 20+ books and watched countless movies; become hooked on re-runs of the sitcom "Scrubs" and the highlight of the day is playing along with Jeopardy! So, I'm ready for this to be over and done. I report to the hospital at 11:30 a.m. on Friday morning and surgery should be around 12:30 p.m., last 1.5 hours and I get to go home and sleep in my own comfy bed and spend the weekend recuperating.
Next up: The Second Surgery.
(This entry has 3 member comments.)
03-22-2007 - 08:14 PM
I've been thinking about this journal for a few days now and trying to decide if it was something I really wanted to do. I've corresponded to several Sisters on the forums and I wasn't sure I wanted to start something like this. I'm a very detailed person, so I do have a tendency to be wordy - so I give fair warning that I may ramble at times! But writing forum posts and sharing this experience has been a salvation for me and has helped me maintain my sanity through a very difficult and VERY unexpected complication from my TAH - the VVF (more about that later).
For reference, I am 44 years old and have been married for 21 years to a great guy who is my partner and my best friend. I hold a Master's in Health Administration and am a licensed skilled nursing facility administrator in 4 states. I've been an administrator since 1993 and have worked for the same company since 1992. I love my work and often spend more hours with my residents and staff than I do at home!
The Beginning. At age 33, I had a tubal ligation related to an ongoing hypertension diagnosis that did not resolve with weight loss and was only controlled with medication. For probably the last 5 years, I experienced progressively worsening pain during my menstrual cycle and in the last 2 years frequently found myself in so much pain it hurt to breathe at some points. Work was complicated and demanding and I kept putting off seeing a gynecologist. I had my annual pap test and exam with my GP and since these were always normal and I didn't complain, she sent me on my way. In mid 2006, I changed jobs, moved to a small community and work actually became somewhat less stressful but then I really noticed how bad my monthly cycle pain was getting. There were often hours during the day that I was virtually debilitated with pain and could do nothing but sit very still. If I was at home, I quite simply took some naproxen sodium (Alleve) and slept through it as best I could.
So, in early November, I took a week's vacation and set up an appointment with a gynecologist. After the intial exam and the discussion of my symptoms, he ordered some tests which I promptly got done. Preliminary results were not life threatening, but according to him, did show some serious problems - a uterus almost twice it's normal size with multiple golf ball size fibroid cysts growing inside. There were also fibroids indicated on the outside of the uterus and the ovaries. The only surgical option for me was the total abdominal hysterectomy if I wanted relief. By this time, it's almost Thanksgiving with Christmas just around the corner.
For a nursing home administrator and staff, there is no busier time than this holiday season! So after discussion, we opted to do the surgery shortly after the New Year. Everything was planned. I would do the monthly financial close for December during the first week of January. Get everyone settled, assign tasks that had to be ongoing etc. the next week and the next week, I'd have the surgery.
Hindsight is often more acute that one would like. It seems now that I was destined to encounter problems. On Friday, Jan. 12, 5 days out, we were hit with a massive ice storm. We lost power in our home around 8 a.m. on Saturday and by 9 p.m. had made the decision to go to a hotel. We stayed in the hotel through Monday night. Our power was restored around noon on Tuesday. My surgery was set for 7:30 a.m. on Wednesday, January 17. My entire prep schedule was shot - I couldn't clean the house, make sure everything was ready and such. It was less than 20 degrees in my house for 3 days so nothing got done that I wanted to have ready.
The second sign that I was destined for problems came when I finally woke up from surgery. I vaguely recall the gynecologist being in recovery and explaining that there had been a "problem" with the bladder during the surgery, a urologist had been called in and that I didn't have a regular foley, but I did have a supra-pubic catheter. He felt they had fixed the problem and he'd see me later. Later, that afternoon, I remember him explaining more details as I was more awake the second go round. My husband had also tried to explain it to me but all I got from him was that the surgery had ended up being almost 3.5 hours instead of the 1-2 hours it was supposed to be.
Later I learned that while trying to separate the uterus from the bladder, there was a small nick to the bladder. At that time, there was not huge concern because that is not unusual based on proximity and the fact that the two were fused together by a lovely fibroid. So the gynecologist stitched it up and tested it for leaks. He discovered a series of perforations to the bladder that had nothing to do with the hysterectomy, so he called in the urologist. Almost 4 hours later, they thought they had repaird everything, no leaks showing, and thought I was on my way.
I spent 2 nights at the hospital. Other than having to keep the catheter for longer than the originally planned 2 days, things seems to be progressing normally for post hysterectomy. I came home and I began my recovery - sleeping a lot, not a lot of pain from the surgery, just very sore. Catheter out after 7 days and staples out the next day. Week 2 began quite normally - soreness, but without catheter, more freedom to move about and this seemed to be good as I was gaining energy. I had been told that if all went well, I could possibly be back at work at the 4-5 week mark. At this point, things were looking really good for this to happen.