Experiences of Polycystic Kidney removal. Please

[Jie]

Thanks Okarol.

CA seems to have a very long list for my blood type, B.

[okarol]

Ji Jie,
I wanted to add that the kidneys are only going to continue to grow and it might be that the projected rate is high and that would mean you'd need to have one or both removed sooner than later. In that case they would probably not want to put you at risk with major surgery when you've had a recent transplant. For some people it can take many, many years before PKD enlarges the kidneys, but with others its much faster. And then there's the risk of infection as twirl mentioned. I hope you find the answer that is best for you.

[Des]

It is intersting to read the posts here. I feel my PKD kidneys are not extremely big (20 cm long) and I am close to 6'. However, I have transplant evaluation through two centers, and both demand my kidney removal before getting into the active list. One center wants both kidney removal and another wants one of my kidneys to be removed. They all use the space as the reason. Even if I do a living donor transplant, the center wants my kidney to be removed 6 weeks before the transplant. Does anyone know a center that does not require removing PKD kidneys for getting into the transplant list in the west coast? Right now, I can get into inactive list only.

I was/am in the same predicament. I have had 3 diff opions in the last month about the same issue.....

I have very large,painful kidneys. The problems that I am facing is that they are both filled with stones and infected cysts. One of the docs said they got to come out because the infection can go amoc with the medication taken after a transplant. Pain is a big problem... it's no use you have a new kidney but are still in lots of pain. Thats the reason why they think its better to have them removed before the transplant. It has to be done 6 weeks before so that the wounds can heal .... the meds after the op can hinder the internal wounds to heal......

I hope that they can make a decision that suits you ... lots of luck.     

[whiskeyfrank]

I’m in the UK so the medical stance could be different. Im not on dialysis yet but not far off, ive got PKD and mine are approx 26-28cm long and the shape of a rugby ball.

They cause me no pain at all apart from the fact they don’t work very well. Apart from the fact that my surgeon (one of the best in the UK and one of the pioneers of live donation) says I have absolutely no room for a transplant and that he wont do my live unless I have them both removed. He also says it’s not a good idea to remove one over both as the remainder may be overloaded and get infected.

Personally I want them out as they are now pushing on my diaphragm and lungs and I can’t eat as I effectively have a gastric band!

[dkerr]

I went in last year for pre-transplant testing.  They refused to put me on the list until I had a bi-lateral nephrectomy.

I decided against it.  I started training today for home hemodialysis.  The nephro said life expectancy on home hemo is equivalent to transplant. 

[Jie]

I have not found any study on the life expectancy on home hemo. For all dialysis patients, life expectancy is a lot shorter than transplant in the U.S. Even those "healthy" patients waiting for transplant, the mortality rate is about 7% each year. If you get a living donor transplant, the expected results should be much better. I did found studies in Japan and France that survival rates of dialysis patients were close to transplant. So if you are doing extended dialysis at home and take good care, you may get a much better results than the in-center HD. However, we still need to think about life quality.

I basically decide to remove one of my kidneys. The surgery pain may not be as much as removing both. After transplant, the remaining PKD kidney would become smaller over time, so it may not be an issue. Keeping one kidney would save me a little residual kidney function so that my PD is a little easier. 

[Stoday]

Google "home hemodialysis mortality" Jie, lots of references there.

On average you can live 40% longer on home hemo, having excluded age, comorbidity, gender etc effects.

[susan parry]

i was happy to read this today (lets me know others are in my boat).  I have PKD, kidneys are 19 and 21 centimeters long.  sometimes have pain-sometimes not.  doc says i am about a year away from dialysis (my gfr is 19).

i wanted to try PD if thats possible (my doc doesn't think so as the size of my kidneys-but nurses at clinic say they think it is possible as there are lots of "cracks and crevises" for the fluid to go.

also i have been listed on a transplant list in upstate new york.  the surgeon felt both my kidneys and he felt there would be enough room for a new kidney. 

[*kana*]

Hi,

I wanted to share my story with you.  On June 17th I had both of my PKD kidneys removed in anticipation of a living donor transplant.  They determined that my friends kidney wasnt tranplantable due to a large fatty tumor.  I woke up to no kidneys, no PD cath and lots of pain!  My IV went bad so I wasn't getting any pain meds.  Despite all the pain that I was experiencing, I did quickly realize one thing.  I could take a deep breath and letting it out was very relaxing.  I am now doing hemo and will be going back in for another PD cath in about 6 weeks.    I was in a lot of pain for about 1 week but I feel so much better except for the dialysis thing. 

They decided to remove my kidneys due to complex cysts and cancer fears.  I was unable to take any blood thinners because I hemorraged in the cysts.  I peed a lot before surgery and I have to be honest, not peeing is hard to cope with.  I joke about it, but I really do have pee envy every morning when I hear my husband in the bathroom.

I lost 18 pounds and 4 belt buckle holes. 

My sister had a transplant in Sept and they left her kidneys in.   In the end I am happy my ugly PKD kidneys are gone!  I ate the biggest meal ever the other day and didn't feel like I was going to pass out from not being able to breathe. 

Best of luck   

[Jie]

Hi Kana,

This is an interesting experience. Did you have a PD cat. before the surgery? I wonder it is ok to do PD dialysis right after the surgery.

I know a guy who went through the same surgery as yours, but he got his new kidney. And his PKD kidneys were found to have cancer later. So he never missed his old kidneys!

[*kana*]

Yes, I started PD in Nov of last year.  They needed to remove the PD cath due to the increased risk of infection while removing my kidneys.  I will be getting a new PD cath on Wednesday.  They told me to wait for 12-18 weeks post nephrectomy to start PD.  I need to go back to work and not sure how I will manage on hemo so I am pushing the PD thing.  I know the risks but I need my job and insurance too. 

[Wattle]

 

I am bumping this topic as removal is booked in again. When I posted this I was due to have my right PKD kidney removed and trying to remain on PD.

Little did I know that I would receive a transplant before the surgery could be completed! They managed to squeeze the transplant in on the left side (a tight squeeze!).
So now I am booked to have the left PKD kidney removed. Arghhhh