Polycystic Kidney Disease (PKD) Support Group

Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.

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/ Polycystic Kidney Disease (PKD) Support Group

Suffering with fatigue after transplant

norma67
norma67
I have a friend with PKD that has had a transplant. He is unhappy with the way he feels? I conclude that the symptoms of PKD do not go away after transplant, just the illness from kidney failure itself? Does anyone else have some thoughts on this? He still has hernias, still has issues with his gall bladder and finally is just as fatigued as he was before transplant. I have been fatigued since I was a young girl in high school and we all know how long ago that was. I conclude it is part of the disease and nothing will go away except the kidney failure? Thanks for your thoughts guys.
VAPKD
VAPKD
Did he have the nephrectomy as well?
deleted_user
deleted_user
pre transplant I had some fatigue and was disappointed that I didn't feel amazing after, as some people did.
seemed the infections kept recurring so I looked into nephrectomy- about 3 weeks after nephrectomy I felt like I did before PKD reared its ugly head.
transplant can restore kidney function but won't affect other parts.
CHeatherS
CHeatherS
This is really difficult to answer, because we are ALL so different. But yes, PKD doesn't go away after transplant, and the immunosuppressants are NOT any fun at all, and add to fatigue. There are so many other issues as well. I would suggest that he gets with a transplant support group as well.

How long ago did he have his transplant?

Spiderwoman, I have been meaning to ask you, how long was it for you, between transplant and nephrectomy?
norma67
norma67
Thank you girls,these are my exact thoughts! If I had a new kidney, all pink and pretty, working like it is supposed to, cleaning our blood, I think, that I could disregard being fatigued? If I could live without these ugly huge evil twins, in my belly, not have to suffer with pain and infections, I think that I could tolerate being tired a lot of the time. But who am I? Just an old woman walking around with a huge belly, not able to sleep, ever. Suffering with muscle spasms at night. A shower just about killing me! I could be a happy person, I think anyway. Oh and drinking all the real coffee that I want. PKD is an ugly disease! Heather, my friend is 2 years post transplant.
norma67
norma67
VAPKD, no he didn't have his kidneys removed, his surgeon stated that his insurance would not pay for it.
deleted_user
deleted_user
Heather, my nephrectomy was 9 months post transplant. I want to mention for anyone thinking about it, transplant is a much easier operation. far less pain, faster recovery. what made nephrectomy good for me was the end of infections. it let my body recover.
CHeatherS
CHeatherS
Thanks for that Spiderwoman. Being so far away from my transplant center (I am in Alaska, Center is in Seattle) I just wonder if I will ever get to it, and I am 66 years old. I tire of the crowded abdomen, of which I sure don't have to explain to any of you but wonder if I would make it through a surgery like that, so far away from home again.