Hello,
I am 6 years past kidney transplant which I received at age 54. I also was fine at 20% and would not have known I was ill until approximately 12% GFR.

At 12% GFR the wheels fell off the cart and everything happened all at once in terms of heart issues, potassium levels, blood pressure, fatigue, foggy-brain, etc.

I understand the importance of gratitude. I was so grateful my diseased PKD kidneys worked to keep me healthy for decades and allowed me a happy life of marriage, children, and career. I could never think of it as a battle against disease. My body worked so hard to provide me with a good life and I was grateful.

You are the only the one who can determine if you are ok with a transplant and when you are ok leaving this life. And it sounds like that is the sort of reflection you are doing - which is a journey to be respected.

I will share the following: I originally went through testing at 20% GFR and found a live-donor match. Then my GFR went above 21% kicking me off the kidney transplant list. Two years later, my kidneys struggled, and I fell below 20% and discovered they had deactivated my match. I had to be retested as did my donor. At that point, my blood levels and heart were struggling so much there was question whether or not I would make it through the surgery and my donor discovered a kidney stone, which removed her as a candidate. It was terrifying to feel the possibility of the transplant slip through my fingers. I share this only to say that a 20% I felt healthy and reflective and at 12% I felt deathly ill and afraid.

Everything worked out I was able to receive the Transplant from my life donor. And I was very grateful for that as well.

As far as the meds after transplant, I communicated to doctors I wanted the lowest possible doses. I said I did not want to be on a steroid long-term regardless of how low the dose. I am for the most part a very obedient patient and do what I am asked however, I know my body and know that it does not respond well to most meds. Over the course of the first two years we played with different medicines to find the ones that worked the best for me. My doctors accept a slightly different trough for me because if meds are increased my BK levels increase and my body struggles. I went off of steroids within the first year post surgery. I don’t believe they are protocol for all programs anymore.

The primary cancer that occurs on the meds is skin cancer. So I am careful to wear sun protection and long sleeve shirts, and hats when I need to be in the sun and I seek the shade.

I know you have different issues to navigate, and I wish you a calm, wise spirit in your decision. Blessings❤️