Experiences of Polycystic Kidney removal. Please

[Wattle]

I have polycystic kidneys and they are growing and growing. I was referred to a surgeon today to assess (again) the space for a transplant and the possibility of removing a kidney. I really do feel 8 months pregnant ALL the time. With my kidneys being VERY large and doing PD there isn't much room left for anything else.   

My dilemma is ..... do I get one removed? I have been on dialysis for four years and still produce a small amount of urine. We all know how hard the fluid restrictions can be, so if you produce a small amount of liquid gold you are very fortunate. I am worried about loosing what I have. They will not remove one at the time of transplant. It is before or after only. I would like to be in optimal health to receive a transplant and feel these kidneys are now a burden.

For those of you that have had your huge PKD kidneys removed..... What was your experience? Was it worth it? Both medically and from a comfort point of view.        

[Ang]

from  a  point  of  comfort, both  : the  babies  3.5kg  and  the  size  of  a  footy  are  gone 

medical  not  to  bad, haemoglobin  won't  budge  over  88,epo  is  now  10  grand  3/fortnight,  you  should  get  at  least  1  out.

[twirl]

ohhhhhhhhh
I have large PKD cysts
they can remove them ?
makes me nervous
so if I ever get a transplant -- I will have three kidneys

[charee]

My pkd kidneys are 26cm at last ultrasound there was some discussion on removing one before transplant but in the end they decided not to , i think now that i  should have insisted that one be removed after talking to at least 4 people after the transplant that had a transplant at the same time as me they had all had at least one removed some even had both and they are alot more comfortable I'm like you wattle and feel very pregnant , and at times very uncomfortable one Dr said they could shrink after transplant but i have heard they can still grow and cause infection and then you have to them removed i think having it done before would have been a better option Even though i have heard its a huge operation what does your transplant team think ?

[paul.karen]

PKD is such a pain.
I have no idea how big mine are but my back hurts nonstop.  Especialy when i try to sleep.
At my recent evaluation they told me if and when i get a new kidney they will not take the old ones out.  If i do want them out it would be another operation months after the new kidney is put in. 

Sorry i cant answer your question Wattle.  Hopefully someone can.  But like you if im still peeing,  im afraid to have one removed.

[Wattle]

Thanks everyone for the responses.

The surgeon I was originally under has retired, so I have an appointment with one of the others on the transplant team.
I was trying to wait until a transplant to have them removed but I am being to think that the right one should go. The just take up sooo much room in your abdomen.
As Charee said it is a big operation because of the cysts attaching to everything and the mere size of the organ.

Ang..... How was your recovery?

[pelagia]

Wattle, my husband had both kidneys taken out 7 weeks prior to his transplant. His body cavity was truly jammed with cystic kidneys and he was having difficulty breathing.  Our perception of events is blurred though because he also made the shift from pre-dialysis to dialysis the moment that operation took place.  Overall, he always says that the transplant/transition off dialysis was a "piece of cake" compared to the nephrectomies/transition to dialysis. 

[Ang]

recovery  was  good,stay  away  from  the  oxycocdone,felt  like  i  swalloed  a  bag  of  cement,could'nt  sit  on  the  toilet  for  about  10  days.


if  your  seeing  amanda  robertson,  you'll  love  her  she's  a  legend.

[Daveec]

Wattle, get rid of them as soon as you can. I had a double bilateral nephrectomy (both PK removed) last November. Best choice i ever made. Yes it was a bit of a struggle at the time but you get you life back afterwards (and lose a lot of weight as well  ). It has taken however 4/5 months to fully recover in preparation for my live tranplant (hopefuly) this June. Good luck 

[cloud393]

I would have at least one removed.  I have PKD also and my neph said my kidneys are about 40 pounds each. My surgeon says no to removal of old ones when I get a transplant. Like you, I am still producing some urine and he says it's too big a surgery and is dangerous.  I'm not a doctor but I think it would be much more comfortable without the PKD kidneys.  Good luck to you.

Lorie 

[keefbeer]

My surgeon has assessed my kidneys to have a combined weight of around 26kg due to PKD and has consistently talked me out of having them removed. He will site surgical risks, infections and anaesthetic problems plus my constant moans about my huge belly and appearance leads him to think that vanity is my major concern.[pretty close to the truth there ]
At the end of the day I think his major concern is that as my general health is okay and stable why take the risk.
Play the hand your dealt and do,nt gamble with the future
     

[Wattle]

vanity is my major concern.[pretty close to the truth there ]
my general health is okay and stable why take the risk.

The removal of one of my kidneys has nothing to do with Vanity. I have been a PD dialysis patient for four years and have pretty much gone the distance with the body image issues.

I am glad you are doing well on Haemo and your kidneys are not a problem to you. This is not the case with many, PKD kidneys do result in additional problems to patients. It is only now after I have had associated problems with the size of my kidneys that we have discussed the removal of one of them. I prefer to be in optimal health going into a transplant and to have a abdominal cavity crammed full of diseased kidneys doesn't leave a lot of space for a transplant to be placed. They will not remove a kidney at the time of the transplant surgery.

Unfortunately I do have to "play the hand" I have been dealt. And "Life is a gamble"   

[Wattle]

    Well it's official.... one has to go.

I have mixed feelings about the surgery. It's crazy really, they are sooo big and cause me so many problems.   


My main goal is to be as healthy as possible for a transplant. I have been told by the surgeon it is not advised to remove them after a transplant due to the danger to the transplanted kidney.

[okarol]

I think you'll feel better with it gone. When will the surgery be?    

[charee]

Wow when is it happening? they do things so different in each transplant centre , good move wish i was more demanding but then we were running out of time and all i could see was life after transplant. keep us posted

[Des]

This is so cool ....
I saw my surgeon yesterday about the same thing....

He says...
They only remove kidneys when......
1. When they are no longer working to an acceptable rate. (not making any urine)
2. When they have had infection in the cysts .. cause the bacteria can stay in there forever and this can harm the new kidney
3. When they have a lot of kidney stones ... this can cause problems later when a new kidney is in. 
4. to make space for the new kidney.
He says that the removal of the kidneys has to take place at least 6 weeks before the transplant can take place to ensure that you are fully healed.

Pain and discomfort was not even given as a reason for removing them.... he says that if they are still working and you can take pain medication they stay where they are... (thats what I have to do)
I have to wait for them to deteriorate some more before I can have them removed. (and just take my pain medication..... he obviously never had this type of pain at two in the morning when you feel like removing them yourself with any sharp object)
Hehehe     

[Des]

ohhhhhhhhh
I have large PKD cysts
they can remove them ?
makes me nervous
so if I ever get a transplant -- I will have three kidneys

The cyst are pockets of fluid..... so they can't remove them but many moons ago they used to drain the very big ones with a long needle through your abdoman but they do not do that any more. Because they just fill right up again and they leek (spell check ) into your abdomanal area and they cause infection......
so it is a case of grinning and just bearing with it.

[Wattle]

Wow when is it happening? they do things so different in each transplant centre , good move wish i was more demanding but then we were running out of time and all i could see was life after transplant. keep us posted

Hey Charee, I think it depends on the individual really. My right kidney is bigger than my left with multiple very large cysts (8-9cm     ). I have just run out of room on the right. It is now pushing on my lungs and making me short of breath. I have a small amount of room left on my left but not much. They can continue to grow post transplant and my surgeon is concerned about major surgery affecting the transplanted kidney. She feels it is safer, for me to do it now. I am still waiting on the list so who knows how long a kidney will be anyway. It is different when you have a live donor.

Every page on my diary is filled for a few weeks ( kids taxi ) so it will be the first week in August.  OMG   

If it all goes to plan, I will still be doing PD. And I will be thankful for small mercys.   

[Des]

Wattle,

I know it sounds kinda weird but I wish I can have mine out as well.......

I wish you all the luck on you op in Aug.... I know you will feel much better and more comfortable after...

[kitkatz]

Take of yourself all of July and try not to be taxi all the summer long.   

[Wattle]

Take of yourself all of July and try not to be taxi all the summer long.   

Thanks Kitkatz. But silly girl it's FREEZING cold and Winter here!  BBrrrrrrr

[kitkatz]

Well try not to freeze your ass off this winter! 

[Des]

Wattle,

Do you have any news on when the op will take place?
Please keep us posted..... I am following this like a hawk because I'm next.

 

[Jie]

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. 

[okarol]

Jie - If you check at Cedars Sinai in Los Angeles they might have a different approach. Or Scripps Green Hospital in La Jolla, CA - call and ask for Amy in Organ Transplant and she will find out for you.