Sarcoidosis: Kidney Failure because of

@JuneAnn Here is what Mayo Clinic has to say about sarcoidosis https://www.mayoclinic.org/diseases-conditions/sarcoidosis/symptoms-causes/syc-20350358

As you will read, a complication of this disorder can sometimes be abnormal calcium levels, that can lead kidney stones [and progress to kidney issues and/or kidney failure]. Is this something you are dealing with yourself? Are you under treatment for the sarcoidosis? If so, what medications are you taking?
Ginger

I had kidney failure due to sarcoidosis almost two years ago. I was on prednisone for 1.5 years.
My kidneys are stable at working 23%. It is quite the journey. I am not on any medications for Sarcoidosis now.

I've been on low dose prednisone for 20 years I'm going to taper off in march I was only on 5mg. Good luck.

Wow!! I do hope that all will be great when you are totally off the prednisone.

I was diagnosed with sarcoidosis with high calcium levels that led to kidney damage and progressively deteriorating kidney function. Early on, I had not connected the sarcoid and hypercalcemia with the deteriorating kidney function. It was my nephrologist that made the connection. I was on prednisone for about 13 months and the sarcoid went into remission, but the damage to my kidneys had already started and continued to progress. When I began seeing a nephrologist, ckd was already at level 3b. The progression was a long, slow process and I was able to maintain level 4 ckd for years. As I got closer and closer to most likely needing dialysis, my nephrologist recommended that I have a kidney transplant which I had last year.

How are you feeling now after your kidney transplant?

@454june3736, I am 8 months post transplant and I'm feeling great and doing very well. My transplant team is very pleased with my progress. My surgery was a robot-assisted kidney transplant which involves a few tiny incisions in the abdomen as opposed to the 8 to 12 inch incision of the traditional kidney transplant. Because of that, healing was quick. And from the time that I was transferred to my room after surgery...to this day...I have not had any pain associated with the transplant and, so, have not needed nor taken any pain medication. I was up and walking around my hospital floor the day after the transplant, and I was discharged just two days after the transplant. I am at the point now where I get blood work drawn every two weeks (instead of twice a week), and I see the transplant team every two months (instead of twice a week). The transplant has been a blessing.

I love to hear this! I am so happy for you!
My levels are staying the same. I am so happy for that.

Are you eating whatever you want or are you on the kidney diet?

Thank you. And I'm glad that your levels are stable. Continue to do what you can to maintain the kidney function that you still have. Like I said, I was able to maintain stage 4 for many years. Even before the transplant, I didn't have too many issues with foods. My phosphorus was never high. In fact, it was usually on the low side. My potassium, however, was on the high end of normal, and once in a while it ticked up just into the "above normal" range. So, for that, I watched what I ate. Since the transplant, though, all of my numbers are normal, including the potassium. I now eat more or less what I want, but in moderation. I try not to go overboard on those foods that I know can raise potassium and phosphorus levels. And to help my kidney to remain healthy, I do try to follow a kidney-friendly diet for the most part. But the kidney is doing its job very well. Praying that you continue to maintain your kidney function and stay healthy.