A Little Advice Needed

[CJEF]

I've had my kidney transplant since July 1990 and I've had some episodes similar to the one now. According to my latest lab tests my Creatinine is 4.73 and my BUN is 55 with trace amounts of protein and ketones in my urine. The only other lab out of range was my phosphorus. All other labs are completely normal. I am repeating them tomorrow again but can anyone tell me if they've had similar situations and what has happened to them?

[lincoln53 NKF Peer Mentor NKF Ambassador]

Hi CJEF,

I wish I could tell you a success story about how I kept my kidney after my creatinine began to rise. I received my kidney from a deceased donor in 2009. For several years, my baseline was between 3.0 and 3.2. I had a couple of episodes where my creatinine rose to 8.1, but then it came back down to 4.1. That became my new baseline, and I continued at that level for a few more years. Recently, however, I was hospitalized with a urinary tract infection, and my creatinine went back up to 8. This time it did not come back down, so am now on hemodialysis. My borrowed kidney gave me 9 good years, and I am grateful for that.

A score of 4.73 is certainly concerning, but if you are able to keep it from going any higher, or even lower it, you might be able to go for many more years without needing dialysis. Who knows, the 4.73 might just be a blip. I hope your repeat test gave you good news.

If it is not good news, you might want to think about having a fistula placed in your arm so that you will be ready if you eventually need to start hemodialysis. A fistula can take several months to develop. I had a fistula placed in my arm in 2014, so it had 4 years to mature before I needed it.

Or you might consider peritoneal dialysis, which doesn't require as much preparation. You can have a catheter placed in your abdomen and use it for treatments within a few weeks. I did peritoneal dialysis for 4 years before I got my kidney transplant.

Keeping a transplanted kidney for 28 years is quite an accomplishment. Here's hoping you can keep it for another 28!

[CJEF in reply to lincoln53]

Thank you and my latest labs did show it drop back down to a 1.94. My baseline usually runs between 1.2 and 1.7 and if I get too dehydrated it jumps into the 2 range.

I had peritoneal dialysis and where I had my tube at prior supposedly there is access straight to my transplant should I ever need dialysis again. Right now I am wandering if it something simple that they just haven't caught yet that is causing this episode.

With your creatinine being so high how do you feel overall in general may I ask?

[lincoln53 NKF Peer Mentor NKF Ambassador in reply to CJEF]

When my creatinine was 4, I felt fine. But they say that you get used to the way you feel when you have some reduced kidney function so that you don't remember what it feels like to have fully functioning kidneys. When my creatinine went up to 8, I knew I was in trouble. It was a struggle just to get out of bed--I was constantly fatigued. I had no appetite. That was when my wife took me to the emergency room.

I'm glad to hear that your creatinine came back down. My episodes of rising creatinine often coincided with urinary tract infections, but I'm sure your doctors would have caught that if that was your problem. It sounds like you're doing all the right things to preserve you kidney. Best of luck!

[CJEF in reply to lincoln53]

Thank you and best to you as well.

When it was at 4.73 or 5.73 the only issues I had was the back pain and urinating issues. Now I do have a vertical compression fracture which also can mimic those similar symptoms too. It is like my PCP said, I am like a puzzle because of the transplant there are so many things that can now mimic others with the immunosuppressants and other drugs I have to take.

Currently I don't feel too bad right now and again my back pain is still present and my urination levels are intermittently okay. If I lay down I could fall asleep no problem but if I am up and moving or doing something I won't. Not sure if it is something as simple as a UTI, prostatitis or something that they just haven't caught onto yet? My appetite is still strong though as long as there is something I like to eat I'll definitely eat it. Hopefully if it is something they'll catch it quick. I do have a slight Neoral Toxicity too with being on cyclosporine since 1990 so like I said I am not sure what if anything could be causing this episode?

[Thankujacob NKF Ambassador]

I had my first transplant in 1995 and in 2005 ish it started showing the same signs. My creatinine was at 4.0 And I had protein in my urine. My dr switched me from cyclosporine to rapimune and it lasted another 10 years.

[CJEF in reply to Thankujacob]

Yeah I am wandering if it is Neoral / Cyclosporine causing this? My follow-up labs are Tues

[Thankujacob NKF Ambassador]

I don’t know if it causes it. I just know changing up my medication helped me.

Hope this helps. Get better