polycystic kidney removal. Hi I’ve just been given the go ahead to have one of my huge polycystic kidneys removed. The surgeon said I was low priority because I’m borderline needing the op. I’ve pushed to get this done because I’ve just turned 60 and am worried that they will get bigger and get removed but I’ll be that much older. I do suffer a lot of discomfort . Im earring very little due to lack of space ( I have liver involvement too).
He listed all the things that could go wrong …. I know it’s a big op . Anyone out there been through this and can give advice or share their experience.
I’m almost 4 years transplanted and everything going well.
Jo
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Well done for getting this scheduled. Sometimes we do have to show how keen we are in order to move these things forward.
I had one of my polycystic kidneys removed 6 years ago due to a shadow being found during a scan. It was a longer operation than planned because it was well established in there. (I was 55 at the time.) The surgeon did it through keyhole surgery, yes, I was surprised too, so I only have a small scar. It weighed 3kg!
It took a little while to recover from the general anesthetic at the time, I was on early stage dialysis too so I'm sure the issues with that did not help my recovery straight after the opp either. I had a kidney transplant almost exactly one year later.
As far as I am concerned, I am extremely glad that my polycystic kidney was removed. I feel far more comfortable now that it's gone and have had no side effects since.
I know they do have to clearly explain the risks but I wanted to just sign the form and get it done. I also have cysts on my liver which thankfully are not yet causing any issues.
Overall, I can breath more easily, am more comfortable eating and am more active and so much fitter than I was.
Thank you for this. My liver is huge and both kidneys so things are very cramped. I know if there were issues like a shadow I would have been given the downside of the op in a different manner. I think it’s because I’m asking for this that they are approaching it differently.. but I’ve been through a transplant so know what’s ahead… although this is a much bigger op.
I am 14 years out with my kidney transplant from a live donor. I have PKD…& had both newborn size cystic kidneys removed in the same surgery as my transplant, along with a hernia repair & closing my dialysis port. A 10 hr surgery @ UCSF. It all went very well. It was a very painful recovery in my abdomen & my back for about 2 months. The huge empty cavity I envisioned being raw tissue that just needed to settle in & recover from such a huge loss of a huge mass. No issues since.
I had mine removed when they did my transplant. They said it was safer to take it than to leave it. That was scary to me because I w old have none of my own kidneys. I had to have my right kidney removed when I was almost 3 years old due to a wilms tumor. My left kidney was huge and it was the size of a small foot ball. It would get caught under my rib cage from time to time. The space it left was only felt when I tried to lay on my right side. No its fine fluid that should fill the space has and I no longer feel my insides shift when I lay on my right side. Good luck!
I don’t have experience with this but I do have enlarged polycystic kidneys so one day I may be facing the same problem. Understand the “low priority “ given the type of surgery it is but also understand your concern of going through it when you are older because recovery would be even more difficult.
Please come back and let us know how your recovery goes. Lots of us with PKD will benefit. And thanks to all who have posted what this surgery was like - it’s helpful to know what to expect from a patient’s point of view.
I’ll keep you posted. It’s so tricky … I could carry on with them as they are and all of the stuff that goes with it. And who knows whilst kn the waiting list of 6-9 months I may change my mind but I’ve got the ball rolling and feel empowered.
I’m so grateful for my transplant but got PkD it doesn’t always end there does it.
Please keep everyone informed on the outcome and recovery of your PKD kidney removal surgery and wishing you all the best. My spouse has PKD , born with it and had his kidney transplant over 4.5 yrs ago. The PKD native kidneys were each 3 times the normal size and the surgeons chose to not remove them. The surgeon said that in time (?) the native kidneys would shrink and not function due to the new kidney doing all the work. I have not given thought of the need to remove the native ones in the future.
hello , thank you for your kind words. I believe that I’m some cases they do shrink. I don’t think that’s happened with mine. I also have a massive polycystic liver which doesn’t help. There was a possible chance that might be transplanted but surgeons decided against it .
I had my large PKD kidneys removed 14 m after my transplant. I spent some time to find a surgeon who had done a fair number of these procedures laparoscopically. For me, the recovery took longer than my recovery from my transplant, but I am glad I had them removed as I also have a huge polycystic liver.
I had my kidneys removed 5 months before transplant because my doctors did not want to do this with the transplant surgery. My case is a bit different, but I can tell you that after those things were out (9 pounds each), I felt relieved and stopped having back pain and heart burn. I was also able to fit my old clothes back.
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