Polycystic Kidney Disease (PKD) Support Group

I would discuss this with your nephrologist. I am sure your friends mean well but they do not know the details of your particular case. Removing one kidney could cause kidney failure if your function is already compromised...but only a doctor can tell you the risk of that happening.

I am in stage 5 ckd so I will have both kidneys removed prior to transplant because they are huge and cause pain when I sleep. But the loss of even one kidney for me would mean dialysis or transplant.

I would definitely talk to your neph about your pain because there are some options out there. I take an occasional sleep aid (mild prescription muscle relaxant) that really helps me sleep through the night. I took it last night and I only woke up once to go to the bathroom! (I am usually up 3 or 4 times)

Much more information is needed before anyone could comment on a possible nephrectomy. What is your kidney function now? How well is your left kidney funtioning versus the right (have you had a nuclear split renal scan done and what did it show)? What are you doing for pain management now? Who is this friend who recommended a nephrectomy and what do they know about PKD? What does your nephrologist and a urologist (the surgeon) recommend?

If you lose your left kidney you lose ALL of the function associated with that kidney. You can't just assume that will be half of your current kidney function as the division of labor between the left and right kidneys are rarely even (e.g. as of 2004 my left kidney only provided about 30% of my total function and my right kidney provided 70% of my total function) and I only had 35-40% kidney function overall. So if I lost my left kidney I would lose about 12% kidney function (data as of 2004; I'm sure it's changed since).

A nephrectomy is major surgery and not to be taken lightly. There are other options for pain relief and sleep management besides major surgery. Please give us some more information so we can give you some more of our "wisdom" and opinions

Ruth

like the others, it is hard to give any advice without a lot more information. kidney removal is major surgery, not to be taken lightly.
generally a nephrectomy is done in PKD patients who are awaiting a transplant and the kidneys are so enlarged there is no room for a transplant - or the kidneys are infected or extremely painful (which is hard to judge, pain being a relative thing).
I had both kidneys removed about 9 months following my transplant, after my 3rd post transplant infection in my native kidneys. my transplant was working very well. still I got several professional opinions before proceeding.
the surgery was far more than the transplant, the incision bigger, more post-op pain and a longer recovery but for me it was the answer.
why not post back and let us know why you are thinking of this.

Yes, discuss it with your nephrologist.

I can tell you my personal story with it:

Don't allow it to affect a decision since we all know that everyone is different....

My uncle couldn't take his cyst pain anymore and the day after one of his was removed he passed away.

The doctors have no clue as to why.

We all feel that it was just too much on his body but there is no way to really know.

Consider what your doc says and how you feel about it before making any decisions of course.

I wish you the best and will keep you in my prayers.