I have huge polycystic kidneys and l... - PKD Charity for A...

PKD Charity for Autosomal Dominant PKD

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I have huge polycystic kidneys and liver. I am having one of my kidneys removed to make room for a donor kidney. Has anyone else had


removal of polycystic kidney/s followed by transplant and then their other kidney and liver dealt with at a later date? and how did it go. I feel in the dark, and uncertain about what lies ahead of me. My renal consultant is great but I need advice from someone who has been there.

11 Replies

Hi. My mother had both of hers out. The trouble is the liver went into overdrive and grew into the gap. There is another major problem with your plan. Kidneys often wrap themselves around or stick to the adrenal glands and these are also often removed causing Addinsons disease a nasty life taking disease where even the treatment screws you up. Surgeons often underestimate the nastiness of this. Having this disease is also a constant fight between the different depts in the hospital and a fight to get the treatment.

damson in reply to Hidden

Thanks for your reply. I will definitely find out more about possible complications. If I want to have my husbands kidney then I have to have one of my old ones taken out as there is no room for the transplant. I hate the thought of dialysis. I only have 14% kidney function left. Right now I cant imagine a long term positive outcome of my condition. And I am feeling pretty low about it. Thanks anyway.

Hidden in reply to damson

Dialysis is not the end of the world. Its a bit like a weird coffee club. It is a bind but you do make friends and learn about stuff. I learn about the machine and the process is interesting.

Don't feel dispondant, if your husbands kidney is a match that is a great thing! I have a friend who has had a kidney transplant and felt and looked 100% better and was able to live a normal full healthy life she just had to take anti-rejection drugs.

Surely u will have to have liver and kidney transplant because if they only take one bad one out the good one will get infected again i have the same disease

jawa in reply to ladyt62

People with PKD have cysts wherever cysts feel like growing -- especially the kidneys and often the liver. But a transplanted organ won't catch cysts from us -- they are caused by an unusual arrangement of our cells' masterplan, the DNA, and the transplanted organ will keep on using its own masterplan that it was built with.

Hidden in reply to ladyt62

Both will have cysts. You may have microscopic cysts but they will be there. The danger is oestrogen makes liver cysts grow and fill the gap quickly. My mother had that.

Have you had the operation? How did it go?

It would be nice if you could add the story here, for future patients to read.


I was told a had a cyst in my liver


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