Hello all, I am new to this support group but my family has been dealing with PKD (polycystic Kidney disease) for generations. Mother, aunts, sister, bothers and even my children were diagonised already. We are thankful for all the research and clinical trails that the medical community has been working on. We have seen how this disease is similar and different at times for us all. At this time we are all at different levels of kidney function and pain levels. Our family functions are sometimes more of a PKD forum on updates. For myself, I knew at 16 years old I had the disease and I lived a full life. Now 40 years later my kidney function has been under 15% for many years but then the overwhemling fatigue took its toll and I went on dialysis only recently. Hopeful for a transplant soon.
My advice to anyone - Be as healthy as you can be. Find the best nephrologist you can find that is familiar with PKD. Maintain a good blood pressure. ( Note: high Blood pressue & multiple pregnacies for women may cause faster cyst growth) Avoid heavy lifting or strain to kidneys.
Good luck to all
I have PKD but my brother is clear. He has offered me one of his kidneys.What is the procedure to find out if he is a compatible donor? Do we need to be tested at the same time in the same hospital? (As I wrote in this forum about a month ago, Chinese medicine seems to be working for me. I'm hoping that I'll never need a transplant, but it doesn't hurt to get tested, I hope!)
Hi, I am 59 years old and was diagnosed with PKD in 1982. Myself and 3 siblings got PKD from my Dad's side of the family. His mother had kidney disease. It skipped my Dad's generation and 3 other siblings and myself got PKD. I was diagnosed with stage 5 on 12/12/2017 and have been on dialysis since 12/15/2017.I am scheduled to go for a consultation on March 8 for PD dialysis. I am...