How did you know you were losing your kidney?

[SOct91]

hi all - I posted here a few months ago freaking out about my creatinine spiking after many years of stability. It’s been months of trial and error and I’m at my wits end and would just like to get a sense from others what it was like or how it felt when your transplanted kidney started failing you.

Details: 38yr with a kidney transplanted from a related living donor almost 33 years ago. For years I was stable, creatinine around 1.5, regimen of MMF and prednisone, the prednisone was discontinued several years ago after causing osteopenia. Biopsy a few months ago showed borderline immune response rejection (not antibody rejection). I was treated with intravenous steroids for 3 days and they added tacrolimus so my current meds are Tac and still MMF. My kidney function has also dropped to where I need epo shots. My creatinine continues to climb (now 2.55 and Gfr 24). My transplant team even admits that the Tac could be increasing my creatinine (so why am I on it?!?). They’re wanting to do yet another biopsy bc honestly, it doesn’t seem like they know what is going on (rejection still? Slowly heading towards failure? Who knows). So I just want to hear from you what it was like when your kidney failed (labs, how you felt physically, etc.) and how you dealt with it all. I’m scared and frustrated, I don’t know what’s really going on and I’m afraid to lose this kidney. Thanks in advance.

Ps I’ve repeatedly complained to my doctor that I’ve lost weight and I have chronic GI issues since starting Tac but she’s like that’s typically not a side effect and kind of dismissed me. Has anyone else had a sensitive stomach since being on Tac? I was made to feel crazy about this.

[Bassetmommer]

I cannot speak to what is happening with your kidney. But...the medication situation is real. Sometimes we have reactions that just do not fit the book. YOU know your body better than anyone else. Fight for information and to see if there is something else.

Just for example, not the same medication as Tac but similar situation. I was put on a biologic for my Psoriatic Arthritis. I know what works and what doesn't but the formulary (insurance) mandates I use it. I was feeling worse and worse. It was not doing anything for my symptoms but also just making me feel morose. My legs felt like they had led in them. I was having terrible cramps, mostly in my legs and feet. Everyone said, it is the dialysis. Try this, try that and I did. Nothing worked. I would wake up screaming. Got my rheumatologist to change the medication and within a few days, I had no cramps. I felt fantastic. I could have gone on forever with this but I spoke up.

[Jamok]

First of all, I’m so sorry to hear you’re going through this! Sounds like you’re not getting informed properly, which even adds to the anxiety of fearing the loss of your kidney. I just recently got my transplant 17 months ago and everything is fine except the tacrolimus is killing me. I’ve had 13 or 14 bouts of of what feels like diverticulitis- Some last for a few days, some of these bouts last for a few weeks. I had a completely normal colonoscopy in March and yet my transplant team still insists it can’t be the tacro. The doctor recently suggested to check with the G.I. doctor that must be Crohn’s disease. Excuse me, I just had a normal colonoscopy 18 weeks ago! It’s absolutely maddening and now I think I’m having an allergic reaction. I’ve had this tickly cough and a feeling of prickles on my skin and a rash on my back. Very similar to how I felt when I found out I was allergic to prednisone years ago. By any chance, are you at NORTHWESTERN? What are your G.I. symptoms?

[SOct91 in reply to Jamok]

Direct messaged you

[LisaSnow in reply to Jamok]

May be worth a visit to the GI clinic. Crohn' s disease patients can and do have normal colonoscopy because the disease affects many different parts of the GI track, it shows widely diverse symptom profile in patients.

[Jamok in reply to LisaSnow]

True, and I did consult with my GI doc. The thing that is inconsistent with IBD is the struggle with constipation versus diarrhea plus the timing of immediately developing GI symptoms with in a week of my transplant.

[bakermaker222]

I, too, am struggling. I received a kidney 2019 and it has been doing very well. My numbers were good and I was feeling great and grateful. I got a really bad case of Valley Fever last year. All my numbers are going in the wrong direction. I'm still ok but probably won't be too much longer. I am way older than you, 73, but don't feel like so I don't think I can be a candidate for another. you, my dear, certainly will get another and I wish you the very best. good Luck.

[ShyeLoverDoctor in reply to bakermaker222]

If you are over 70 you should be able to get a kidey right away - depending on other issues. Go to the Cleveland Clinic and inquire.

[Winner76]

hi,

I’m 4 years out and on Tac. 2 years ago I was diagnosed with ulcerative colitis and have so many gut issues and I’ve lost 18kgs in the last year. I know that’s not drastic but I haven’t been trying to lose weight. I very rarely have energy to do much .

[Merlin_Way]

Octobre 1991 baby, I would also be nervous after many good decades. Be proud of your 33 years! I had no idea organs could last that long in a second person. Clearly you took good care of it. I'm sure you will be well placed on the waiting list, if you can't find a living donor this time.

[LisaSnow]

The immune response rejection is not the easiest type to treat and is a chronic process that's driven by inflammation. That is why your doctors want another biopsy to see if the treatment you received has helped. This follow-up biopsy is informative for the next course of treatment. You have been a responsible and successful patient for many years. I am sure if needed, you will be eligible for a second transplant and that you will likely do well again. Try not to think too far ahead though. Take good care of yourself!