Hello I am on the waiting list for a kidney transplant and the meantime trying to do all I can to find a live donor.
I get quite a lot of back pain with my polycystic kidney . I was wondering for those who had a transplant did your back pain ease at all. I know a transplant isn’t a cure for the disease someone told me I don’t know if it true hat the cyst will shrink some when you have a transplant you will still have them unless your kidney are so big they removed your kidney
Howdy…I’m the 4th in my fam to have transplant due to PKD. They removed the diseased kidneys due to hemorrhageing in one of them. This was done robotically along with the transplant. I really never had much back pain prior to nephrectomy/transplant. I asked about their size and a resident — who was present during surgery— said they were dense and about the size of a Nerf football.
Btw, I’m the first in family to have nephrectomy. Last year my uncle — 5 years post — fell and ruptured a cyst. Ended up in hospital due to blood loss. Anyway, I don’t believe it’s standard protocol to remove the bad kidneys unless necessary. Though, I’m glad they’re gone in my case.
Best wishes with a future transplant. I’ll send positive vibes your way. Hope you get a donor soon 😊
Thank you wintersolider
Hi. I had my transplant from a living donor 3 years ago. I was diagnosed with PKD about 24 years before my transplant. From my understanding, the back pain is due to the cysts. I had severe back pain a few times throughout the years but my PCP never diagnosed the pain as being related to PKD. I was not seeing a nephrologist on a regular basis at that time.
From what I understand, once the native kidneys “die” the PKD is gone. The new kidney will be free of PKD. I have been told that PKD may be the only underlying condition that actually goes away with a transplant. Although a PKD kidney transplant patient has to take care of the new kidney and follow all protocols, there is no need to worry about the underlying condition. Make sure to double check with your nephrologist though.
My native kidneys were not removed and I have not had any severe back pain since the transplant. Good luck!
Thank you herkidney
I had my living donor transplant 3 years ago, and I still have my old, lazy PKD kidneys. I was told that they don't remove the old kidneys unless there is a medical reason, such as routine bursting of cysts or they are so large that they would impede the transplant. I was also told that the old kidneys could shrink, stay the same or even grow more. Mine seem to be about the same. The old kidneys don't die, they just become freeloaders. The new kidney does most of the work. My new kidney is doing great, 20 years of nonsense from the PKD was mostly gone in 4 days. Good luck
Thank you dexterlab
Hello, my spouse of over 40 yrs had PKD and had a non living donor transplant over 3 yrs ago. His two native PKD kidneys were checked for size and though each was 3X the size of the human fist,they were not deemed large enough to remove during the transplant surgery. The surgeon said in time, but the 'time' could not be known, the native kidneys would get smaller , cease to work and the new one would not obtain the cysts and be doing all the work. The PKD did not cause my spouse back pain before transplant. After transplant he had his first ever in life cyst burst, which was very painful for 2 wks, but it never happened again. The transplant team told him if the cysts kept bursting, then they would be removed, but so far 3 yrs later that is not the case. I hope you obtain a donation soon. You are correct in saying a donation of a kidney is a treatment and not a cure. All my best.
I had cysts in both the kidneys, got them removed before my Tx, I had back pain issue. I did cat scan visited multiple doc but no relief.
Now that cysts are gone back pain is also gone with them. What a relief.
I would say I may go away after the nephectomy is done.
Thanks
Thank you to everyone I get quite a lot of flank pain now I have had cyst break before and there no fun . I know I have a giant cyst on my liver and it pushes in my organs so that not fun . I know my nephrologist told me they leave the old kidney in unless they see it medically necessary to removed . I’m trying to learn everything I can before a transplant happens so I thank each of you for taking the time and posting
myself i never really had back pain unless a cyst burst but after transplant he ave it off and on that side as i think new kidney squishing old one a bit but nothing heating pad doesnt
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