PKD has affected my family for generations. My father was diagnosed in his early 30s and eventually went on dialysis at age 50. He did dialysis for about a year before having a transplant. Sadly, he died young from stroke complications, the day before his 60th birthday. I have three brothers and a sister, all older than me, and I was the only one diagnosed. I was 23.
It slowly progressed and I dealt with the extreme discomfort for years. Kidney stones, burst cysts, etc. Despite the effort of my nephrologist, I had to start dialysis at the age of 45. I remained on dialysis for seven years (about 4,700 hours and almost 2,000 needle sticks.) I was careful on my restrictive diet and stayed in pretty good shape throughout. I have a great support network of family and friends, and I was able to drive myself to dialysis and continued working 35-50 hours a week.
In October 2023, I received a phone call at 12:20 a.m.—they had a matching kidney from a cadaver at Mass General Hospital in Boston for me. I lived on Cape Cod and was able to get there within an hour and a half. Once there, they gave me dialysis and then I was prepped for surgery. Three hours later, I woke up and the surgery was successful! I was released from the hospital three days later.
The next week was tough—I needed 24-hour supervision—so I stayed with my sister and her family. I was sick from the pain meds and stopped taking them on that Sunday. I had to do dialysis three times that week, but it was shorter than usual. Sometimes it’s needed to jumpstart the new kidney. After about four days I felt way better.
The pain is pretty much gone, and I feel great. Lots of meds for now but they’ll ween me off some of them slowly. Eventually, I’ll just be on immunosuppressant drugs for the rest of my life. Lots of appointments and bloodwork. Monitoring of weight, blood pressure, temperature, heart rate, and urine output.
The team I have at MGH are unmatched and so on top of everything. I can’t thank them enough for this new life and I’m looking forward to getting my 15 hours a week back and eventually being able to travel. I think staying positive and just keeping a good attitude is what helped me the most. I never let it define me.
Although I’m not out of the woods yet, I’m feeling positive and hope that someday I can thank my donor family. Good luck to anyone who is going through this and thank you for letting me share my story.