After more than 4 years of severe pain from my PKD kidneys, a solution has finally happened. After being told that the pain was “just in my head” for so long we finally got to talk to a team that would look at the situation holistically.
For me, taking large amounts of pain killers is worse than being on dialysis. Sounds a little obvious, but when local nephrologists don’t want to take a risk on the small amount of kidney function that remains it can be a hard debate to get past. After all the pain is not their problem, it has nothing to do with kidney function. It’s up to the Pain Management Team to deal with the pain, although they generally know little about the PKD issue.
The short version of my story (which some may have seen in previous posts) is the after +4 years of 8 to 10 Endone a day plus Fentanyl patches I’ve had my remaining kidney removed. Turned out that it adhered to the wall of my gut. So basically it only hurt while breathing. I’m now pain-free. Within 2 weeks of the surgery, I was on no pain killers.
This was a risk, but a very educated risk with the team at Westmead Transplant considering the quality of life and not just a kidney function level.
Yes. I’m now on haemodialysis. I’ve been ready for this since PKD was confirmed in me.
My grandmother had it, my mum has it. While never risk-free, it has given me a much better quality of life. Even if I was not fortunate enough to have a living donor, I still would have taken this option.