Nephrectomy or Not...that is the question.

[jeanngal]

Good Morning!

I am new here and have PKD. Transplant is scheduled for November 14th. It has been determined that there is enough room to put the new kidney in without removing the old ones. I have chronic pain in my left kidney. It's not debilitating but enough that I reached out to my surgeon back in May to determine if he would remove the kidney if I wanted. He agreed that it was a good idea. During my pre-op visit this week we again discussed removing the kidney and I left the meetings with doubt as to whether I should do this extra step.

My question is:

Has anyone with PKD and chronic pain elected to leave the old kidneys in and if so has the pain subsided after transplant?

Thank you for your input and best of luck to everyone out there working through life with kidney disease!

[Balap]

I too have pkd and both of my kidneys were removed before transplant due to recurrent infection, cyst burst and chronic pain. for those who has generally less symptoms/troubles pre-transplant, the pkd kidneys will likely shrink post transplant.

for those who already suffer from various symptoms, the pkd kidneys will usually continue to enlarge post transplant with increased infections, chronic pain, bulkiness.

In my opinion, just mild pain is mild form of pkd, and most likely no pain post transplant.

Another important deciding factor is size of the kidney. enough room is not enough, need comfortably enough room, which depends on your height and length of the kidney

[jeanngal in reply to Balap]

Hi There!

Thank you for your reply. If you don't mind my asking, what kind of chronic pain did you have. Was the recovery very hard after the removal of both native kidneys?

[Balap in reply to jeanngal]

My Left kidney was 22cm in length and weighed 1.5kg and the Right was much smaller. My tummy was flat. dull flank pain lasts for few hours then subside. I had chronic pain 3-4 days a week. Cyst infection caused severe bleeding and required emergency nephrectomy. the laparoscopic surgery went from morning 9.30 till evening. Initial 2 days in ICU was horrible, IV line in R hand another IV line in neck, blood collection bags in L and R side of abdomen and dialysis in L hand. I started little walking on 3rd day and felt better on 5th day. My recovery time is just 4 days due to laparoscopic surgery. 1 month after the surgery, I had zero pain and felt very happy for the nephrectomy. nephrectomy for transplant is mainly decided by frequency of Cyst infections and space for new kidney.

Post transplant, cyst infection and kidney enlargement are the main concerns and the pain usually subsides. After nephrectomy one need to wait for atleast 2 months for complete healing and then Transplant is done.

[Gardner-NY]

Hello jeanngal, My spouse of 42 yrs have PKD and had his kidney transplant 11 months ago. Maybe every 18 to 24 months he had a kidney cyst bleed/leak but 2 months after transplant had his first ever cyst burst. 2 wks of pain and blood in urine and blood clotting. Painful then it went away. When he had the transplant the surgeon let us know the kidneys with PKD were not large enough to warrant removal of one or both while doing the transplant, so both native kidneys are in his body still. They are about 3 times the size of a normal kidney each and in time they will reduce in size and stop functioning. I wonder if you could ask your nephrologist if over time with the new kidney, will the native kidneys also get smaller and perform less function and then that answer may help you make a choice to keep them or not. Ask if you keep them and they function less will they cause you less pain over time. We were told that a 2nd surgeon was in the room incase one or both native kidneys warranted removal and if so, the surgery was more involved, ICU time was more and more possible issues going on instead of leaving them inside his body. So ask your doctor and choose what is best for you. All my best!

[jeanngal in reply to Gardner-NY]

Thank you so much for your reply! I was told pretty much what you mentioned above. Yet they said that the native kidneys are not monitored after transplant so they're not sure if they will get smaller or not, etc. I still have a few days to decide but it's been nice to have different perspectives. I really appreciate you taking the time to reply! And I hope that all is well with your spouse!

[Gardner-NY in reply to jeanngal]

Hello jeanngal, the first 2 months after transplant all was fine. Then Feb2019 a native kidney cyst burst (first time in life) and he was in a lot of pain and bleeding/clotting in urine for 2 wks & in bed more than anywhere. Then on its own that stopped and late FEbruary Transplant called and said come, we have a bed waiting for you. Creatinine was climbing so we went to hosp 90 min away and needle biopsy showed "low grade rejection", so he was on steroids by IV for 5.5 days then released from hospital--rejection ended,creatinine started going down. HE was on high doses of oral steroids after that. And also found while in hosp. his hemoglobin was below 7 and a shot of retocrit given, and since March 3X a week to Sept I gave him this med to get hemoglobin above 10 (it was stuck at 7.3 'ish for over 7 months). Finally in mid Sept the number went above 10 and we stopped the retocrit and now this is 14.4. HE layed on the couch more than anything for over 7 months due to extreme fatigue. Then in August we found he had CMV virus and restarted Valcyte drug 4X normal dose and as of last week, CMV is gone and valcyte reduced by half for 3 mos. Newest problem is very low white blood count from .5 to 1.5 (yesterday). So we wait to see if reduction in valcyte ups the WBC.

It's been a hell of 9 months for him, and I work fulltime and his only provider. Glad I have lots of physical energy. My downfall is emotional feeling 'down' at times with concerns. I'm ok, but so many things no one at transplant tells you. this was and is the only forum I have with my counselor I see so that "I" keep it together. It's a different journey for everyone is what I have learned. write anytime.

[jeanngal in reply to Gardner-NY]

Hi Gardner-NY. Jeez y'all have really been through a lot. It's such a process and I also think that we don't always get told the full picture. I truly wish you all the best of luck. Deep breaths and take time for yourself as well.

Jen

[Gardner-NY in reply to jeanngal]

Hi Jeanngal, thanks for writing and your support /understanding. Blood work on MOnday shows WBC at 1.65 (last week 1.5) so the reduced amount of Valcyte is helping though slowly. My husband feels better due to higher hemoglobin which is great. Yesterday we had 6" of new snow and for the first time in 11 months he came out and broomed off the 3 vehicles in our driveway while I snowblowed for 3.5 hours nonstop. He moved the vehicles out of my way and put them back. This may sound small and yes our snow is light and fluffy, but it was the first exertion in energy he has given physically. I was happy. He is a tiny bit sore. It's a start to moving onward. Thanks for your support.

[jeanngal in reply to Gardner-NY]

That's great news! Isn't crazy how a chore like that can lift spirits. Love it! We are headed to the hospital now. It's two hours away and I have to be there at 530am. Im nervous but anxious to see what it's going to be like on the other side! Take care of yourself and so glad to know that your husband is feeling better! 🤞