PKD kidneys removed at time of transplant

How long did you all have to wait after transplant to consider removing the PKD kidneys? I am just 3 months post transplant and am still having pain at times in the lower abdomen. And my cystic liver moved up from the surgery so I have pain from it pressing on my ribs in front and on the right side. Plus I have scar tissue from the Peritoneal catheter being pulled out. Did most of you also take 3-4 months to heal from the transplant? I still have lightheadedness too and get short of breath too. This is a much slower process of healing from the transplant than I ever was told or anticipated. I think many of my internal organs moved a bit from the adding the new kidney and I at times feel the pain more now from the kidney and liver cysts. I never felt pain from these cysts prior to transplant. Did others think their organs moved from the transplant? Thank you for your comments as they really help me. I live in the San Francisco bay area and got the transplant from CPMC, California Pacific Medical Center. Thank you and have a great day, BB

Hello
I am 15 months post transplant and I'm scheduled for my PKD kidneys to be removed in 3 weeks, They wanted to wait at least a year to make sure my new kidney was working well
As far as the light headedness and short of breathe, I felt that why the first few months but in my case it was due to the new medications With a few adjustments things got A LOT better,
Hang in there. I'm no doctor but your body is still healing

Initially, I was supposed to have mine taken out 6 months after transplant. Then COVID happened. So we waited until things calmed down a bit, and I had mine removed 2 years after transplant. My understanding was that 6 months was a good time. Recovery was much slower than I expected, and certainly longer than most other people I talked to that had a transplant. Again, I think PKD is its own beast. I took more like 6 months to feel better. Truthfully, I did not start to really feel good until they got my meds lowered a bit, and I had both PKD kidneys out of my body. Then I started to heal for real.

Everyone's body is different and so the process is different for everyone. But most of your symptoms sound familiar and yes, all of those (dizziness, weakness, breathlessness, and flank pain) got much better for me with time and once I was PKD free.

Sending Blessings!

Thank you Stephanie and Bobbin. Wow! I did not expect the transplant recovery and the PKD kidney removal to be so long. I am sure learning to be patient. And some of the hospital stay was traumatic for me. So, I do not relish going back into the hospital for another long recovery and pain. I am 73 years old and I thought the long recovery was due to age. Maybe by 15 months - 24 months I will have forgotten the first difficult recovery and will be ready for the PKD kidneys to be removed. I will ask my transplant center if they even do this removal. Are all transplant centers required to do this removal? And how risky it is. THanks again, BB

How was recovery for you? Did anyone get an ileus? Was your b/p high afterwards? How long did they leave the foley cath in?

@somedaydialysisfree, I am tagging @blbird33, @stephanierp, @bobinnevada to this discussion, because they might have be able respond to your questions.

Thanks!

I had mine taken out 2 weeks ago post one year transplant. Rollercoaster of a ride. Just got home still draining fluid. Lost about 25 lbs. a lot longer recovery time than conventional transplant
Hanging in there
Bovinenevavda

Yes did have ileum’s, had to go back in and clear

I sympathize. My initial transplant with one kidney removal was traumatic - with days and nights of pain not managed well, and a 12 inch surgical incision. Other kidney transplant patients on the ward were lapping me, when I walked the halls trying to remover. I dreaded having the second kidney out. And almost didn't. I just could not imagine putting my body through that much trauma, again. And I did not want to go through the PT to regain core strength, again.

My second kidney removal was so much better. The difference was in the surgical approach. The first doctor did an open surgery - leaving a 12" incision. The second surgeon did kidney removal by way of laparoscopic surgery, with hand assist. This left minimal incisions of two 1" incision and one 3" incision. Pain was managed well and I was walking around doing my normal stuff within 2-3 weeks.

Advocate for yourself. Find a surgeon, who will do laparoscopic surgery and who is well-versed in PKD.