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Polycystic kidney

has anyone had a polycystic kidney removed? How was the surgery and recovery time and was there any ill effect on the transplanted kidney?Thanks.
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    • Thanks so much for your story BDR!  It certainly seems as if everyone has a different story, different age, different condition...  So, you said you had cysts in your brain, that is a new one for me.  I have had them about everywhere, pancreas, liver, ovaries, but never heard about the brain.  I do know that one can get the beri aneurysms with PKD however.  And yes, we still have the disease... some have it more with other organs... we seem to have it most with kidneys.  

      • This reply was deleted.
        • No no, you didn't scare me, just informed us all, and I know others who have had the berry aneurysm.  I was just trying to be clear if that is what you had, rather than a fluid filled cyst like we get on the kidney and other organs.  So you have really been through a lot, and your experience and information is very valuable, thanks SO much.  

        • Thank you so much for all the detail in your responses. Yes I also have cysts in the brain and in my liver. No problems with them though luckily. I know we have PKD for ever but I had my 1st transplant 22 years ago and am interested why cysts don't form in the transplanted kidney. Had a 2nd transplant in July and all is well there (except for recurring CMV and quite a hair loss!)
          • I guess that being as our new kidney is not of the genetic DNA for PKD, that is why it will not get cysts on it....  

            Blessings on your Betty, I hope that the hair loss slows down.  I had it after my transplant, and I did regain my hair.  

            • Thank you and the same to you. How long did it take to get a decent head of hair?
              • I suppose it was within the year...  I am 3 1/2 years out.  I understand there is something that they give us during the transplant that causes this, so it will pass.  

                • My doctor said it was the prograf so he switched me to cyclosporine which I had taken successfully with the first transplant. I think the hair is starting to come back, at least it has stopped falling out. Interesting how many people have had this happen. No hair loss at all with the first transplant.
                  • Interesting, I am still on a pretty high dose of Prograf, but my doctors said it was a hormone that they were giving me in the IF.... which I am not sure what it is.   So gosh, I don't think its the Prograf.  

                    • The spots ran the gamut from needing biopsies (probably basel cells which I have had before - this is from the immunosuppressants) to raised non-threatening looking red patches. The doctor used a machine that looks like a small paint sprayer which is full of frozen air. Whole thing took less than 10 minutes but was pretty intense.
                    • Aha!  Very interesting!  Hmmm, tell me about the spots...  and the freezing.  I haven't seen a dermatologist since I had my surgery.... 

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