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My ADPKD Story: From Diagnosis to Transplant

“I’m four weeks out of the nephrectomy and one week away from the transplant.”

David Birkley

Transcript

It was the year 2000.  A longtime friend of mine noticed that I had sudden weight loss and recommended that I go see a doctor, which I did.  My mother had PKD, and I felt it was a good time to get checked. Through testing they found, via ultrasound, that I had had PKD, and I started with a nephrologist.

They were monitoring my daily dietary intake and blood pressure and things, and I kept track of everything pretty thoroughly for about four years, five years, and I moved, and in that time period I let my health kind of slide. Didn’t pay attention to the nephrologist or my doctor at the time because I was young and thought I’m going to be okay. 

I lived with it pretty much normally for ten years with just high blood pressure being really the only side effect. I had occasional kidney stones.  I had some stomach pain, but I led a normal life.  I was very healthy.  I was mountain biking, hiking, climbing mountains, doing what I do or going to work every day, traveling. So, my life was normal. 

I found out that I needed a nephrectomy about four years ago. My nephrologist has been really, really good.  She has taken care of me over the last four years, monitored the decay of my kidneys and the growth of them as well. That was as big thing was the size.  They were forcing other organs into other parts of my stomach and causing nausea and digestion issues and things like that. Nausea had become a major issue.  My quality of life had decayed considerably over three to four months in this last year. The size of my kidneys overtook my stomach, and I was unable to eat, digest food properly. My professional life did struggle a little bit from this.  I had to stop working a couple months ago.

I’m four weeks out of the nephrectomy and one week away from the transplant. I now have to do dialysis three to four days per week four hours per day. It has affected my lifestyle because I have to plan around it, and that five-hour window every other day is a little bit.

I do a lot. I’m very active.  I go to the store.  I grocery shop.  I walk two to three miles a day.  I mountain bike, not a lot, two to three miles a day if I can.  So, I’m staying very active during dialysis.

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