My maternal grandmother died at the age of 50 from PKD. My mother lost function and went on dialysis at age 45 and had a cadaver transplant at age 50. Dialysis was so horrible for her that when her transplanted kidney failed at age 70, she decided not to do it again, and she went to Heaven. My sister had a transplant at 44 and my brother at 50 from living donors.
I’m 52 and late Stage 3. I had a cyst decortication last year and I’ve been on Jynarque for six months, praying it will give me more time. I have four children ages 16-23 and we’ve decided not to find out yet if they have it. Praying the buck will stop with me!
