Anybody have this?

[Cordelia]

Anybody have a bulge/swollen sides because of your polycystic kidneys? I've lost 60 pounds in less than a year and my right side is sunken in while my left side where I have more cysts, is bulged. It's weird to see it. Anybody have the same problem?

I'm hoping to have my old kidneys removed after transplant. Anyone know if those old kidneys were to stay in, whether or not the cysts would attack the 'new' kidney?

[Ang]

would guess yes that cysts would attack new kidney, had both kidneys removed, right side pretty much have a hole cause theres nothing there . left side is distended.
during a scan for new kidney, asked to scan left side and told it was bowel.
just live with it till surgery comes around again, might ask surgeon to fix then

[Cordelia]

I kind of wondered of the cysts would attack the new kidney.

[PatDowns]

I'm hoping to have my old kidneys removed after transplant. Anyone know if those old kidneys were to stay in, whether or not the cysts would attack the 'new' kidney?

These are RSUDOCK's responses  to my questions about her PKD from another thread:
(http://ihatedialysis.com/forum/index.php?topic=22816.20)

PD - Notice you have PKD.  Were your native kidneys removed before your first transplant?  Was cyst formation the reason for function loss of your transplant?

RSU - I still have my native kidneys. I assume that the cyst were what caused the kidneys to stop, but I have never been told point blank that.

PD - Noticed on a different board that your transplant date has been set.  Congratulations! 

I asked the question about the cysts to see if you were going to have a nephrectomy so they don't  leech onto the new kidney.  Is it the type of PKD you have or preference of your transplant center to leave the first transplant in?  Always thought cysts in PKD made the kidneys so huge and painful as well.

RSU - thanks for the well wishes Pat!

I am not going to have a nephrectomy b/c my native kidneys are not huge ....yet. I don't have the dominant PKD so that maybe why mine aren't huge. (someone correct me if I am wrong. I have tried to look up the data but no luck)  The transplant center wants to keep the first transplant in if it is not causing any problems. Guess it is a simpler surgery to put the kidney in a new place. Also it is easier for the patient as well. Less time under anesthesia.


RSU - talked to the doc....autosomal recessive PKD the kidneys do not get huge (good news) but, the liver tends to have more problems. (bad news)

the cysts on the kidneys don't typical leech onto new kidneys b/c the cysts grow b/c their is a genetic abnormality within the kidney. When you transplant a new kidney that kidney is good to go b/c the genetic mutation would not exist in the new kidney.



 

[CHeatherS]

Correct, the cysts will not attack a transplanted kidney.  But you can expect to see cysts on your liver, and other organs.  Perhaps they will never cause any harm like happens to the kidneys, but some folks have liver problems.

[Cordelia]

Thanks.....   

So.....I could possibly one day anticipate a liver transplant then perhaps?

[Jie]

PKC patients have the best graft survival rates, so don't worry about the cysts' attack; it will not happen. Primary reasons to remove PKD kidneys are space and pain issues.

[CHeatherS]

I do know of some who have had to have liver transplants as well as kidney but very rare indeed.  I would not anticipate that at all.  But surely your labs would tell of your liver function.  It's the kidney function that the cysts seem to really mess up.

[Cordelia]

I think my liver function is fine. Whew, I hope I won't. I'm relieved to hear that, thanks   

[rsudock]

Anybody have a bulge/swollen sides because of your polycystic kidneys? I've lost 60 pounds in less than a year and my right side is sunken in while my left side where I have more cysts, is bulged. It's weird to see it. Anybody have the same problem?

I'm hoping to have my old kidneys removed after transplant. Anyone know if those old kidneys were to stay in, whether or not the cysts would attack the 'new' kidney?

Thanks.....   

So.....I could possibly one day anticipate a liver transplant then perhaps?

The liver involvement come into play with people who have autosomal recessive Polycysitc kidney disease aka infantile kidney diseae. You usually begin to have problems with your kidneys when you are very young.

Since your kidney are huge from the cycts I assume you have Dominant PKD, so your liver shouldn't be a problem.


PAT DOWNS good job! I was just getting ready to mention our convo!!!

I'm hoping to have my old kidneys removed after transplant. Anyone know if those old kidneys were to stay in, whether or not the cysts would attack the 'new' kidney?

These are RSUDOCK's responses  to my questions about her PKD from another thread:
(http://ihatedialysis.com/forum/index.php?topic=22816.20)

PD - Notice you have PKD.  Were your native kidneys removed before your first transplant?  Was cyst formation the reason for function loss of your transplant?

RSU - I still have my native kidneys. I assume that the cyst were what caused the kidneys to stop, but I have never been told point blank that.

PD - Noticed on a different board that your transplant date has been set.  Congratulations! 

I asked the question about the cysts to see if you were going to have a nephrectomy so they don't  leech onto the new kidney.  Is it the type of PKD you have or preference of your transplant center to leave the first transplant in?  Always thought cysts in PKD made the kidneys so huge and painful as well.

RSU - thanks for the well wishes Pat!

I am not going to have a nephrectomy b/c my native kidneys are not huge ....yet. I don't have the dominant PKD so that maybe why mine aren't huge. (someone correct me if I am wrong. I have tried to look up the data but no luck)  The transplant center wants to keep the first transplant in if it is not causing any problems. Guess it is a simpler surgery to put the kidney in a new place. Also it is easier for the patient as well. Less time under anesthesia.


RSU - talked to the doc....autosomal recessive PKD the kidneys do not get huge (good news) but, the liver tends to have more problems. (bad news)

the cysts on the kidneys don't typical leech onto new kidneys b/c the cysts grow b/c their is a genetic abnormality within the kidney. When you transplant a new kidney that kidney is good to go b/c the genetic mutation would not exist in the new kidney.



 

xo,
R

[Cordelia]

I don't ever recall anyone saying I have liver problems, so I'm likely fine. I was diagnosed with the PKD sheerly by fluke when I was 19 yrs old when I was getting an upper and loewr GI series done. That's when they found the cysts. Up to that age, I had no clue.