Having Both Kidneys Removed & Starting Dialysis

[SusanJacobs Profile]

I am 34 years old and have PKD. I am getting ready to have both kidneys removed and start dialysis while I wait on a transplant. I am interested in speaking with anyone who has had both kidneys taken out about what to expect, side effects, etc.

[zionsgate1]

Hi Susan, I had both my native PKD kidneys removed at the same time in 2006. I was 48 at the time and already on dialysis. I have had c/sections and it was comparable to that type of surgery. They managed my pain quite well and made sure I received the appropriate dialysis while in hospital. It took me a bit longer to recover due to low blood pressure issues but overall I was quite ready to return to work after a month. Do you have any other specific questions? Let me know, I will answer what I can. I had mine removed at hospital in Kansas City, MO. Great surgeon. Many Blessings

[jenn888]

Hello,

I am 42 years of age, currently on dialysis and have been on the transplant list for 2 yrs. 4 months. I have very large PKD kidneys but do have residual function. I never have fluid removed during dialysis, and actually I am given fluid during treatment. This is because of my residual function which allows me to still urinate. I too live in Kansas City and am deciding on whether to have a nephrectomy. I would then lose my ability to urinate so I would then have to have fluid removed during dialysis. If I do not have them removed my doctor says I would have to wait six months post transplant to have the nephrectomy. Any advice from anyone on which option is preferable?

[Moderator Profile]

Hi jenn888! Thank you for your post. I noticed that you live in Kansas City and wanted to let you know that we have a Chapter in Kansas City. To reach our local volunteers, email kansascitychapter@pkdcure.org. Very often, our local volunteers can connect you with someone that lives near you that has had some of the same experiences in managing PKD.

[anita couch]

[anita couch]

My husband is considering having both kidneys removed He has been on transplant list for 3 years he is so sick right now! We are hoping having kidneys removed will help. But he has heard a story where a man had his removed and died shortly after. He is scared so am I. Any feedback would be greatly appreciated.

[bestdayever]

I had the first kidney taken out to make room for the transplant, the second was a few years after the transplant. Truthfully I felt so much better once they were out, just removing the cause of so much pain. It didnt make dialysis any easier, but I did feel better without them. I think it's natural to be worried, it's a big surgery. I would make sure you have a surgeon you trust and can talk honestly with and feel free to ask questions.

[linr53]

I'm 62, divorced, working FT. My kidneys still function but I'm not seeing a nephrologist. Finances are barely survival level. I have no desire to go on to dialysis. I've cheated death 100x. What is it like to simply let my kidneys fail and succumb to ???

[sunshyn7529 Profile]

I am 40 y/o, have been on dialysis for 2 1/2 years, and just had a double nephrectomy December 22, 2015. I was exceptionally uncomfortable. I couldn't breathe well, I was unable to eat much, I vomited quite often. I also had residual function, and had never had fluid taken off until after the surgery. I can honestly say that I am so much more comfortable, able to breathe, less depressed, have more energy, am able to eat, all around healthier and happier. Just make sure you have a surgeon who listens to your concerns. I found the recovery to be worse than the surgery. Trying to make sure you don't lift or strain for 6 weeks is very difficult, because you start to feel 'healed' weeks before you truly are. If you need more information, I am happy to answer any questions you have!

[Bear Profile]

sunshyn7529,

Thank you for that information; it's exactly what I needed to know. Personally, I was on PD until my stomach had no space left and am now on HD with residual function (urine, but no toxins removed) and now am on O2 as my lungs are too compressed by my kidneys. I have a "double nephrectomy" scheduled for a few weeks from now and really wonder more about the recovery than anything else. You mention it was harder than the surgery; would you tell what parts were harder or anything that wasn't as hard as you thought it would be? (I'm a stay at home dad and my youngest is turning 3 and is a rambunctious boy.)

Thank you!