What next?

So I have been dealing with chronic fevers Since my resection in March. Had LAVH to get rid of infection. 9 days post op another fever. So more antibiotics, 5 days later,ER, because of shortness of breath, Diagnosis-UTI and Anemia. Next step urologist and Infectious Disease Specialist. I saw him last Tuesday and tons of blood work Wednesday. He told me at my appt. that he may never figure out what is wrong. Sometimes FUOs remain a mystery. I was hoping that by Friday I would know one way or the other. Friday morning when I used the restroom there was blood in my urine. He had gotten the
Urine culture back and it didnt find anything. So just see how the weekend goes. I was pretty upset to say the least felt totally put to the back burner. I purchased an at home UTI test it showed a trace of blood. The weird thing was when I peed in the cup there was a small hard piece of something. I kept it and put it in a ziploc bag. I have been so exhausted I don't want to do anything not even really get out of bed. I have felt so crummy I havent even really been walking like I should only around the house and yard if I can muster the energy. I am wondering now if we will ever know what this is. I wonder if the exhaustion is the fever, anemia, or depression. I don't know if I should talk to my dr. about going back on happy pills to see if that will help or just wait and see what the ID dr. finds if anything. I am very discouraged. My DD is getting married July 15th and I am so afraid I won't have the energy to help her the way I should. I am just so frustrated. Anyone else have similar issues? Any advice?

Sorry no advice here, but lots of (((hugs))) and support! I hope that ID dr figures out what's wrong so you can get back to normal. Good Luck!

I'm sorry for your troubles caringheart but, honestly, I think you are on the path to recovery. Sounds like you have had to deal with feeling unwell for A LOT longer than most of us and yes, it can definitely drag you down. I was depressed and frustrated after having a bad day here and there with my recovery and those were feelings I had only a week after my surgery! I couldn't imagine dealing with multiple complications which will DEFINITELY slow down your "normal" recovery window (my only complication was a UTI and it definitely made me feel worse). FYI - I have had microscopic hematuria (i.e. blood in urine) for years now. Went to urologist for tons of tests and they never could figure out why. I had my TAH because of a cancer diagnosis and went back to my Urologist for another cancer test just in case - no bladder cancer but still I have the hematuria. After researching it on the internet I found that a lot of people seem to have blood in their urine to no ill affect. Now, that doesn't mean you shouldn't go through testing to make sure and it sounds like you're doing the right things. But, if they don't find anything then you need to just go on living your life. What you're feeling now does seem to be a combo of the fevers, anemia and depression. I think a lot of us have asked the question, "Am I ever going to feel good again?!" - you have just been asking it longer and I'm sure it's taking a toll. If you can REALLY focus on yourself right now and baby yourself, you should be able to finish recovering - I know it's hard but try to not even think about getting better for the wedding - you should be getting better for YOU. Talk to your doctors, take your meds to clear up your complications, lean on your friends and family in your time of need, and KNOW that you're on the road to recovery. I am wishing you well!

Thank you for the support! I know I am feeling sorry for myself. but its just been such a long road and I do not know how much more I can take. I know we are not supposed to be given more than we can handle, but geez! Plus I just realized today that summer semester starts on Monday, thank goodness I only have online classes this semester.

You poor thing. I can only imagine how frustrated and down you must feel.

Do you think the hard thing in your urine was a kidney stone? I used to get fevers and blood in my urine when had kidney stones. They can make you feel like you have the flu sometimes. Chills, night sweats, unexplained fevers that come and go, groin/flank/back pain, exhaustion, etc. So many different problems they can cause.

Good luck to you, Try to keep your head up. We are here if you need us :0)

That's what I am wondering, I plan on calling my Dr. tomorrow. See what he thinks. Even though its kinda gross that's why I kept whatever it was in my urine. I figured that way they could look at it. and maybe give me an answer.

So I heard back from ID dr office tests were all normal. I did pass a couple stones this weekend, so back on antibiotics for that and I have decided to go back on Zoloft. I think it will help. I just am not functioning well these days. I probably needed to go back on them awhile ago, but put it off, I thought I could handle stuff on my own. I see him again on the 14th. I guess I will find out "What's next" then.

I'm glad they were able to figure out what was going on so you can begin the healing process. Did the docs dissect your stone to see what kind it was? It helps to let you know what is causing them.

Thanks for keeping us posted on this. I hope you are feeling like new very soon!

Can I ask what they are doing to treat the anemia?

Beth- they did not test the stone and I kept it just in case. Maybe they will later.

Seas- I ate lots of red meat and took a multi with iron. The tests show I am no longer anemic, so that is good news.