Unidentified Pain

[HopeinTN]

So, to preface, I’m on month 20 of CTX/Pred/Bactrim. I had a pretty bad UTI in April and another one last week, surely due to the immune suppression. However, for a few months I’ve noticed a sharp pain in my back that shoots to the front. It hasn’t been constant until now. Last week when I noticed it again, I couldn’t help but think, it must be a kidney stone that is high in the left kidney. It’s very painful with coughing, deep breaths and now movement. Let me also state that I have not injured myself in any way and not even too athletic at this point. I got in 9 holes of golf on Saturday but had to quit because it was too hot. I didn’t notice any pain while playing but it started again later in the day. Leads me to believe that it’s not a muscle.

Monday, the pain was getting so bad that I went to my PCP and had a chest x-ray (looked ok) and she thought it might be pleurisy but my oxygen was at 100%. I mentioned the recent infections and that I was thinking a stone but the pain was just too high on the left side (back that shoots to the chest). I have had stones and the pain is a radiating pain with them, but never this high, but always the left kidney. She checked my urine and it had lots of blood. Good deal, it has to be a stone. I head to the hospital clinic for a CT scan…no stone. However, the radiologist did mention that he saw a rather large abnormality on the bottom right lobe (they only got a small look at the lungs since it was a CT scan of the abdomen). This came as a shock since this pain is in the left chest area and not the right. The right lung is the most damaged by the Weg’s and I’ve had the middle lobe removed as well as part of the top. (BACK HISTORY)…At my last CT with my Weg’s doctor (Rheumatologist) the radiologist made a comment that the right, bottom lobe has a spot that previously measured at 6mm but now at 1cm. At the time I mentioned this to my doc and she said it was nothing to worry about but possible normal healing from the surgery (May 2011).

I called my pulmonologist and he is getting me in tomorrow. Any thoughts on what’s going on or what to expect. I’m guessing they will need a CT of my chest. Here are some symptoms:

Nausea, pain that shoots from the back to the front, pain when coughing and deep breaths, not a new pain but comes and goes, no injury involved, easily winded, pain started this time around the middle of last week and getting worse by day.

Thanks guys! Katrina

[drz]

Sorry to hear about your symptoms and hope they diagnose correctly and quickly so you get some help to feel better soon. Please let us know what they find and what you learn.

[Pete]

Hi Katrina,

I'll hazard a guess that after 20 months on ctx, it's catching up with you. You may have some sort of bladder issue or potentially hemorrhagic cystitis. Might be worth getting a nephrologist on the case.

Good luck,

[annekat]

I hope they get this figured out soon, Katrina, and you can get some relief. I'll be thinking of you.

[HopeinTN]

Thanks gang! Yep, I agree about the bladder issue and my urologist and I need to discuss it. I had a cystoscopy last October so she could get a good look at it and have something to compare to if the CTX starts causing problems. I've always had bladder/urinary tract issues from a birth defect, but have been doing great until recently.

Good news is that my EKG was fine so we ruled that out. At least with the lung I know what I'm dealing with. Just hoping it's not a new issue.

[Debbie C]

What did the dr. say about having all that blood in yr urine ?

[marylz]

Hope you find out what's going on and feel better very soon. The pain sounds awful!

[mishb]

My husband had that sort of pain on his left side going from the front through to his back and he also thought that he had a kidney stone or two, as he has had them before.
It turned out to be his gallbladder - very inflamed and full of stones.
My daughter also had stones in her gallbladder, but her pain was on the right hand side.
I don't think either of them had blood in their urine though.

I tend to agree with Pete in that it might be the CTX.


Whatever it is, I hope they can help you quickly and relieve you of some pain.

[Pete]

Hi Katrina,

As far as bladder issues are concerned, you need to see a urologist. Nephrologist will address kidney problems.

Good luck,

[drz]

One urologist told me that CTX meds can some times make your bladder inside look like raw hamburger but I was lucky not to have such reaction, just lots of bladder infections and low WBC while on it but it did help control the Wegs dog.