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Advice, please - too many doctors Advice, please - too many doctors

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  #1  
Unread 04-08-2010, 01:07 PM
Advice, please - too many doctors

I could use some advice. My surgery was done by an OB-GYN. I was staged by an GYN-ONC. I just had a consult with a Hematologist, and I'm waiting for an appointment to have my inferior vena cava filter removed by a Radiologist. All of these docs are based at a very nice teaching hospital here in Boston (Hospital 1). The only reason my TAH was done there was because it was close, and it would have taken the ambulance 35-45 minutes to get to my normal hospital (Hospital 2, where my kids were born) and based on my condition at the time, the EMTs thought that was too long to travel.

My primary care physician is affiliated with a completely different practice, and has privileges as a totally different hospital.

Here's where it gets complicated. I've been released post-op by my GYN (boo-hoo, he's the one I liked the most) because I'm fully healed from surgery. I have to see my GYN-ONC every four months to monitor for any cancer recurrence. The hematologist was kind of a one-off, but she's doing all sorts of tests relating to my higher-than-normal risk of blood clots, and she thinks my blood is interesting.

My PCP will be monitoring my anticoagulation (again, for the blood clots) for six months after I finally get the IVC filter removed. However, she is so not in the loop regarding everything that's happened at Hospital 1. I have to update her on everything whenever I see her. Worse, her practice is no longer affiliated with Hospital 2 (where all my other medical records & procedures have been for the past decade); rather, they've switched to Hospital 3 where I've never been! (Yes, I'm planning on getting a copy of all of my records from Hospital 1 and giving a set to my PCP.)

Still with me? Okay. So my GYN says my PCP is now my first line of defense if anything on the List of Embarrassing Questions comes up (bleeding, shortness of breath, dizziness, etc.), and she will contact him if she thinks it has anything to do with the surgery, or my GYN-ONC if she suspects it's the cancer. Whatever. She'll also be doing my semi-annual maintenance (paps, flu shots, etc.). But he also said, Don't hesitate to call me if you have any questions or problems. (But he's sweet like that, so maybe he says that to all the girls...?)

My question is, does anyone have any suggestions on how I'm supposed to coordinate all this? I'm going to be dealing with multiple hospitals and tons of test results that I barely understand, and I have the sinking feeling that it's going to be a giant game of telephone if I'm the one who has to remember all the details. I wasn't that bright before the surgery - ain't no way I can cope given my menopause-and-insomnia-induced brain fog. I just need to know there's a grown up in charge, and it can't be me.

Any wisdom you can offer would be greatly appreciated.
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  #2  
Unread 04-08-2010, 01:36 PM
Re: Advice, please - too many doctors

Hi danablue! I wish I had an answer for you - maybe someone in your geographic area has a suggestion (where approximately do you live?) as there are sometimes care support personnel depending on local health policies etc.

If I were you, I'd be making myself a table or a flow chart or something... I can totally understand why it's overwhelming, and how difficult it is to have to figure out hospital processes!! Maybe if you were to do up a chart or flowchart, and show it to each of your doctors they would get a better sense of what you're up against, and offer some suggestions? So often I think they only understand the "process" that they are involved in, and don't know what it's like to be on the other end!

Good luck!!!
  #3  
Unread 04-08-2010, 01:41 PM
Re: Advice, please - too many doctors

I have to admitt that I'm a little confused. However, I think asking each doc you see for copies of all records (blood work, scans, etc) and then giving each doc you see after that copies of the records would be easiest. Can't always depend on them to fax the results to multiple docs. This one might be better handled hands-on.
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  #4  
Unread 04-08-2010, 02:47 PM
Re: Advice, please - too many doctors

danablue, Normally this sort of confusion is coordinated through your primary care physician. I'd call that office and talk to his/her nurse to be sure, but they'll probably have you make sure all records are being copied/forwarded to them so they can see the WHOLE picture of what's being done. They certainly don't expect you to understand it all.
  #5  
Unread 04-09-2010, 09:53 AM
Re: Advice, please - too many doctors

Hi, I'd err on the side of caution and as Vega suggested get records of tests, procedures, etc. from any doctor I saw and pass them on to the ones you visit. You could also ask if your PCP office also sent the same records and if so then not worry re further visits. It really does sound rather confusing and hopefully as time goes on the doctors will also coordinate with each other.
s
  #6  
Unread 04-09-2010, 12:26 PM
Re: Advice, please - too many doctors

I agree. I would not only get copies for ALL doctors involved but I would also get a copy for yourself and start a binder. Divide it just like the hospital does with test results, doctors notes everything. Get Everything from all doctors and hospitals chart notes and all and put them in this binder. Then take the binder with you to every doctors appointment that way if they forget seeing something or haven't seen it yet you can just open your binder and let them get caught up. (yes, they should be caught up before you come in, but that doesn't always happen unfortunately.)

The other thing I do when I go into the gyn/onc office (or any office where we might be talking about something really important) I use the tape recorder app on my iPhone (if you have an iPhone it is a free app called iTalk lite) you can record your conversation with the dr and then either save it on your phone or move it over to the computer if you start to get too many on there - but I think you can record like 21 hours before it starts to get full). If you don't have a phone that will allow you to record maybe invest in a small handheld recorder that you can take into drs appts with you. That way if you feel that you can't remember something that was said you can listen to it again or if you feel there is something that another dr needs to hear the exact way the other dr said it you can replay that part of the conversation for them.

There is also another app for the iPhone that I really like called Doctor Visit. I think it might be $0.99 but it lets you keep all medical information for multiple people in it. Meds taken, allergies, appointments, blood type, contacts, medical history, surgeries, reproductive history, family history, recent test, recent x-rays and scans, a check list for upcoming appointments, and a place to list any questions that you have for the dr.

Someone else told me about a google medical records thing, but I haven't really looked into it but it is suppose to keep all medical records in one place online so you can grant all drs access to it. Might be worth looking into in your case.

Good Luck.
  #7  
Unread 04-09-2010, 04:20 PM
Re: Advice, please - too many doctors

Thanks so much, guys, for responding. I feel like I'm working myself up over this. I guess I don't much like the feeling of not having a plan.

Stephanie, I like the idea of a binder, something portable I can take to my PCP. If I have to educate her every time, then so be it. Maybe I'll just have to put my big girl pants on and insist that she call my other doctors, even though they're not in her same practice.

My number one concern is that my PCP and the new hospital she has privileges at won't have access to my hysterectomy-and-cancer related tests and records in an emergency. Like, if I got hit by a car, or had to have some unrelated surgery, I would have to be the one to tell them that they MUST anticoagulate me or I'm probably gonna throw a clot and die. I know that sounds over the top and silly, but ... I don't know how else to explain it.

You've almost convinced me to get an iPhone. Almost. I'll look into the google thing, though.

Again, thanks for the suggestions.
  #8  
Unread 04-09-2010, 08:16 PM
Re: Advice, please - too many doctors

I have a huge cardio team cuz of my genetic heart condition (HCM) that involves regular cardiologists, cardiac electrophysiologist, research study team members for developmental heart devices, my St. Jude medical equipment tech and my checkup nurse I see every few months for some readouts. They all send a copy of EVERYTHING they do to my PCP. Most of them will be visiting me at my "Hospital 2" next week because they're based at my "Hospital 1" but my GYN is at #2 and since I just had a heart procedure last month, they all want to hang out and make sure their handiwork survives things I guess. Either that or they just want a field trip!

If you ask me, the biggest part of my PCP's job is to collect and keep track of all my speciality paperwork. I don't get hurt or go see him for a broken finger (never had a broken finger anyways, heh) so he wouldn't have much to do if it wasn't for keeping track of my records! He doesn't even hang out where I'm at to make sure I'm okay... he's a great guy but he just doesn't do all that.

I would get a medic alert bracelet if I wanted info known in the case of an accident though. You can engrave it with info and phone numbers or even a website URL with even more on it, anything you want. Then all you have to do is remember to wear it!

*hugs*
Deedee

ps. iPhones RULE when it comes to medical apps, my entire cardio team uses various apps to do their jobs even, and you can get your CT and MRI scans downloaded to it even (so I heard, haven't done that myself yet)
  #9  
Unread 04-10-2010, 08:50 AM
Re: Advice, please - too many doctors

daydream, I seriously love you. It sounds like we're in similar boats (although yours is bigger). It's so reassuring to me to know that Hospital 1 and Hospital 2 can coordinate with each other. I have a feeling that my PCP is going to be fairly hands-off as well.

  Quote:
iPhones RULE when it comes to medical apps, my entire cardio team uses various apps to do their jobs even, and you can get your CT and MRI scans downloaded to it even (so I heard, haven't done that myself yet)
For some reason, I find this utterly hilarious. Good thing I'm a big Star Trek fan,'cuz technology is catching up to science fiction . . .

Thanks for your response - I hadn't thought of a med alert bracelet. I'll check it out.

Good luck next week with your hospital stay.
  #10  
Unread 04-10-2010, 09:00 AM
Re: Advice, please - too many doctors

Perhaps I missed something here, what was the cancer and what was the clot, did you develop a pulmonary embolism?
Is part of this story on another post?
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