Living Long-Term at Stage 4 Kidney Disease

@berns3 I’ve been diabetic for 51 years. The last time I posted in this discussion was in 2024 and I had Stage 4 CKD at that time. I have NOT found that “the diets for each (condition) cancel the other out”. Eating for Diabetes is about managing the carbohydrates consumed. Medications &/or insulin can help with that. Renal nutrition is about “eating for the labs” as my nephrologist says. This means avoiding salt/sodium; limiting protein, especially red meat; monitoring calcium, phosphorus, potassium and sometimes oxalates. Stay hydrated well. Your provider can tell you what amount is right for you.
All of this isn’t easy but it is necessary. I was Stage 4 two years ago and on the kidney transplant list / inactive (not quite bad enough for active listing). Now I’m stage 3 and have been removed from the transplant list. Better kidney health is possible. Don’t lose hope.

I am on the kidney transplant list (inactive) at NW in Chicago. Sadly, Mayo is a 9 hour drive and that’s too far. But I have a matched living donor who was also tested at NW. My issue is I feel great. My combined creatinine eGFR/ Cystatin C is 19. I’ve heard so many talk about living many years in stage 4. My Nephrologist at Mayo said they won’t consider a transplant until I’m around 8!! She said many people live normal lives and feel good, there is no one answer and it’s entirely individual. A transplant gives me pause. The anti rejection drugs open doors to new diseases. None of which I have now. I guess I’ll stay in the wait and see status. I’m 69 years old. My DH grandmother lived to 101 …I think since she was 80 in stage 4. But she took excellent care of herself, diet totally Mediterranean only chicken and fish. Something to think about!

@mrainne I went to Mayo in Rochester for kidney transplant evaluation in 2016. At that time my eGFR was bouncing from 14 - 42. My local nephrologist said I was probably in Stage 4 CKD. The Mayo nephrologist said that I was probably worse than what the eGFR indicated. I was approved and accepted for transplant but listed inactive. I spent the next 10 years learning about hydration, renal nutrition, getting my 51 years of diabetes in as good a control as possible and treating hypertension. Diabetes and hypertension are both well controlled now. This past March Mayo kicked me off the transplant list completely because my eGFR has been in the low 30’s for a long time now. I was told less than or equal to 20 is the deciding cutoff for transplant consideration. (I asked my local nephrologist about the Cystatin C test and he didn’t feel it was necessary. I have an appointment coming up Monday and will ask again.) I think you are in good hands at Northwestern in Chicago and it is great that you have a matched living donor. If I were in your shoes I wouldn’t be too overwhelmed by the idea of transplant. I personally feel it beats the idea of dialysis. What is your situation regarding that? I also wouldn’t worry too much about anti rejection / immune suppression meds. They aren’t as terrible as they sound. Besides they have come a long way since the first transplants were performed. I had a pancreas transplant 21 years ago (another story) and the required meds have been doable. What is a “DH grandmother”? You likely have good genes on your side!

@cehunt57
I appreciate your comments! DH (dear husband), his grandmother. Honestly, I don’t fear the transplant itself, I wrestle with the long recovery. Because I am bi polar 1 and the lithium gave me a wonderful and healthy life for 40+ years…I do not blame lithium although it is why my kidneys are failing. There is one anti rejection drug that affects moods and mental health. I have to consider this side effect in particular. I am asking a lot of questions on the NW portal now. NW in Chicago received a huge donation to study bi polar disease. Maybe the advancements from that research will help my situation.