Has anyone with polycystic kidneys had a single or bilateral nephrectomy? My husband still has both kidneys, but his stomach has enlarged over the years, most notably over the last few months. He has noticed that he feels full after eating small amounts and is sometimes short of breath (usually when stooping over and then standing up again.) He often says that his stomach "feels strange," and when asked to describe it, he says he can't.

I have read that sometimes the kidneys are removed when they become very large and begin to cause problems. I have also read that the enlarged kidneys have been known to press against the spine and contribute to disc damage. He has pain and numbness in his feet, and has had back pain for years, so I've wondered if this might be happening to him.

Is it common to have the diseased kidneys removed with Polycystic Kidney Disease? And what effect, if any, does this have on a person's health afterword? I am desparate to find anything that will help my husband to live as normal a life as possible. I am trying to learn as much as I can about his disease and treatment, but sometimes I feel that it is an uphill battle that I am ill prepared to fight.

He was diagnosed in 1988, and has gradually worsened until November of 2000 when he went on dialysis. Since then, he has gotten weaker and is often sick; often depressed.

Sorry I talk so much. If anyone has the time to read this, I'd appreciate some input.
BC

Does he take Renagel. It can cause amazing bloating. Does he have high fluid gains inbetween treatments..

Yes, he takes renagel. We didn't know about the bloating, thanks. Is there an alternative he can take?
BC

Hi BC:

I, too, had PKD and both kidneys were grossly enlarged by the time I was on dialysis. My stomach was becoming barrel shaped.
Soon after I started dialysis, I had the first removed by standard surgery. I wish I could say everything went smoothly, but there were some post-op problems. I had the second kidney removed in Toronto by laparoscopic surgery. Although the second kidney was the largest , I came through with next to no problems and a scar about 4mm long compared with one about 18mm long after the first surgery.
I have written to some extent about my experience under the "Your Words" section at this site.
In the end, I was happy to have both native kidneys gone.
Best,
Mike