PKD Discomfort post-Transplant?

[RuthWells]

Hi all,

It's been forever since I've posted, but I hope you won't hold it against me!  I've been incredibly busy with a new job and trying to keep my energies up while sliding into Stage 4 and starting early phases of the transplant process.  My brother is a potential donor, so I'm incredibly lucky.

My question is for PKD patients specifically.  I have a fair amount of discomfort from the cysts in my kidneys and liver, and my doctor does not forsee a nephrectomy or liver resect in the near future; ie., I'll have a transplant but no other surgery.  Can I expect the discomfort to minimize as GFR improves with a transplant (knocking wood), or will the discomfort be independent of kidney function?

Thanks,

Ruth

[okarol]

Hi Ruth - long time - but happy to see you! 
Have they given you any idea what size your kidneys are now? I know sometimes space is an issue so a nephrectomy is advised, at least for one kidney removal on the transplanted side. Cysts can hurt - both my sisters and my brother have PKD, but have varying degrees of discomfort - some people feel nothing - but you don't want to be on long-term pain medication so it seems like the surgeon might want those PKD kidneys out. I hope others with experience post here.

[RuthWells]

I've already been told they won't do a nephrectomy this round.  It's been a while since we've imaged the kidneys, but they were about 18cm each a good few years ago, so I figure they're larger by now.

Thanks for responding, and I hope all's well with your family.  Now that I've settled into my new job a bit, I hope to spend more time here on IHD!


Ruth

[openboat]

FWIW, I've had very little cyst pain post-transplant.  I don't know if it is due to the new kidney or the meds (I was on Rapamune for 15 months).  It was bad enough before the transplant that I was taking Darvocet 2-3 times per week for the pain. 

From what I've read and been told, a nephrectomy isn't scheduled unless there is some specific reason to take the natives out.  Chronic infections, a tumor, things like that.  Recovery from the nephrectomy is harder than from the transplant.

[RuthWells]

Thanks for that input, Openboat -- you're giving me hope!   

[mk]

Hello Ruth
I find that I am much more comfortable since the transplant. I had a lot of back and flank pain which I thought was from an old back injury and not my pkd. but now the back has improved and I've learned that it was the cysts. My old kidneys are still there but my physicians said that they will get smaller so maybe that helps too. I hope you get improvement too. Everything is so much better after transplant than late stages of renal failure or dialysis. Cheers. Mary

[RuthWells]

I'm glad to hear that you've had such great improvement, Mary!