Polycystic Kideny vs. Transplant

[Hazmat35]

I have Polycystic Kidney Disease.  If I were to get a Transplant, does anyone know if the disease will transfer to the new donated kidney's?  I have asked my doctor, but he has never given me a straight answer. 

[willowtreewren]

I don't have a definitive answer for you, but my husband who has PKD was transplanted a little over a year ago. His "new" kidney is going as strong as ever.

 

Aleta

[Restorer]

I'm not an expert on PKD, but since it's a genetic disease, it won't affect a transplanted kidney.

[coravh]

I asked about this once on another board and a number of pkd transplant patients told me that the pkd does not affect the transplanted kidney. So that's info from other patients.

Cora

[Cordelia]

I have PKD. My urologist told me that it wouldn't the new transplanted kidney.

I have a lot of pain though from my cysts. I will be pushing to have my old kidneys removed after my transplant.  They will not remove them at the same time of having a transplant.

[MooseMom]

I have PKD. My urologist told me that it wouldn't the new transplanted kidney.

I have a lot of pain though from my cysts. I will be pushing to have my old kidneys removed after my transplant.  They will not remove them at the same time of having a transplant.

I'm sure there's an easy answer to this, but I don't know what it is...why won't they remove your cystic kidney and just pop in the new one where the old one was?  Easy peasy lemon squeezy!  See, that's not so hard!

[Restorer]

I'm sure there's an easy answer to this, but I don't know what it is...why won't they remove your cystic kidney and just pop in the new one where the old one was?  Easy peasy lemon squeezy!  See, that's not so hard!

Essentially, "that's not how we do it." They have well-developed procedures for placing kidneys where they do now, and removing a kidney at the same time, regardless of necessity, increases the risk.

[Cordelia]

MM, I was very upset when my urologist told me this. I said EXACTLY the same as you, it's as easy as 1-2-3!          Why not?! It makes sense to do it that way but as Restorer said, yes, that's why.  I was disappointed because I thought it could all be done in one surgery too. Why go through 2 general aneshetics?    I figured.....

I hate to know how much weight my cysts are inside of me, my tummy is always looking poofed out. I wonder once they are gone, how much weight I will lose instantly?            Even though I have lost 65 pounds since I started dialysis, likely because of the renal diet.... I can't seem to get rid of that jutting out tummy.....I know its the cysts.      My left enlarged kidney has actuallly caused my left side to look lobsided-jutting out of my body....if I look at my body in the mirror while standing naked........

When I suggested the idea of getting rid of my old kidneys, my urologist was't impressed. I told him I'm in a lot of pain, which is true....I get stabs of pain in my flanks and back.  I may have to do some pushing, he seemed uninterested doing the added surgery  but I think  have a good case to have them removed.    He told me I had 'room' to plunk the new one in. 

This disease has held me back doing things I want to do.....I want to do gardening and I want to jog and I can't with this pain.    I will not let his disease take over me and I will fight to  the fllippin' end if I have to to have these  diseased kidneys removed.     I wanted them gone now but they won't take them out before transplant because I have always urinated and that urine is like gold when you're on dialysis so they refuse to take them out now.     I've lived with the pain long enough .......I can't wait to get rid of them, they've been nothing but a thorn in my side for esp the last 20 years of my life!!!

[Hazmat35]

WOW, thanks for all the information. 

I too, have lots of pain in my back from the Cysts.  Last time I had a CAT Scan, that DR was amazed how large the Cysts were, he said that he gasped when he saw them.  My Neph keeps hounding me to take them out, and then I wouldn't be in pain nor on the pain meds any longer, but I just can't wrap my head around taking out a vital organ.  Even though, it isn't doing much good to me anymore. 

[Cordelia]

I can totally relate to you on the pain. I'm not on any pain pills at this point. I am so intolerant to pain meds, then my butt suffers so I choose not to take any pain relievers.

Have you had a transplant yet?   I was told they wouldn't even try to surgically get rid of the cysts only. I'm stuck with them AND the diseased kidneys until after transplant. Whenever that will be     

I had a huge cyst burst just before Christmas and I had blood in my urine for a whole week. To some degree, it has helped alleaviate some pain. I'm surpised actually the bursting of the cyst didn't happen sooner since I have had pkd for 20 years.

One of my nephs told me my kidneys are the size of two hand palms placed together.

[Hazmat35]

I can totally relate to you on the pain. I'm not on any pain pills at this point. I am so intolerant to pain meds, then my butt suffers so I choose not to take any pain relievers.

Have you had a transplant yet?   I was told they wouldn't even try to surgically get rid of the cysts only. I'm stuck with them AND the diseased kidneys until after transplant. Whenever that will be     

I had a huge cyst burst just before Christmas and I had blood in my urine for a whole week. To some degree, it has helped alleaviate some pain. I'm surpised actually the bursting of the cyst didn't happen sooner since I have had pkd for 20 years.


I have pain meds, but like you, i am so tolerant to them, that it is like eating candy!  They do no good what so ever, and the DR will not up the Milligrams, for fear of getting addicted to them.  I've tried DALIDUD but, it makes me so foggy, that I can't concentrate the next day, for work. 

I have NOT had a transplant, but he keeps at me to take out the two kidneys!!!!  I get blood in my urine, too, when they pop.  Not all the time, but more than normal, I think. 

One of my nephs told me my kidneys are the size of two hand palms placed together.

[Cordelia]

I can totally relate to you on the pain. I'm not on any pain pills at this point. I am so intolerant to pain meds, then my butt suffers so I choose not to take any pain relievers.

Have you had a transplant yet?   I was told they wouldn't even try to surgically get rid of the cysts only. I'm stuck with them AND the diseased kidneys until after transplant. Whenever that will be     

I had a huge cyst burst just before Christmas and I had blood in my urine for a whole week. To some degree, it has helped alleaviate some pain. I'm surpised actually the bursting of the cyst didn't happen sooner since I have had pkd for 20 years.


I have pain meds, but like you, i am so tolerant to them, that it is like eating candy!  They do no good what so ever, and the DR will not up the Milligrams, for fear of getting addicted to them.  I've tried DALIDUD but, it makes me so foggy, that I can't concentrate the next day, for work. 

I have NOT had a transplant, but he keeps at me to take out the two kidneys!!!!  I get blood in my urine, too, when they pop.  Not all the time, but more than normal, I think. 

One of my nephs told me my kidneys are the size of two hand palms placed together.

I can't take any form of Tylenol, I was on Percocet once for severe shoulder pain, somebody nicked a nerve in my neck or something to cause me to have brachial neuritis so I tried percocet for pain for about 6 weeks then just took myself off of it when the pain subsided.

I'm so sorry to hear you have so much pain.   I know how frustrating it really can be!!

[Hazmat35]

Yesterday was HORRIBLE!  My cysts must have been popping, because my back was killing me, and there was blood in my urine. 

I only went for 3/4 of my treatment on Wednesday, because the pain was so bad, I couldn't bare to sit there any longer. 

Feel MUCH BETTER today, once the cysts have finished popping!

[jshabanian]

I have polycystic kidney disease and had both kidneys removed at the same time I had a living donor transplant.  They took out the old and put in the new at the same time.  The reason they took mine out was there was not enough room for a new kidney.  My old kidneys weighed about 10 and 11 pounds each.  The disease does not pass to the transplanted kidney.

Since my transplant failed last year I am now on dialysis.  Because I do not have any working kidneys I do not urinate and have to get all my cleaning from dialysis.  Your native kidneys perform some residual function even when they are not working to their optimal.  They also regulate some hormones, so if you can keep the old ones you are better off.

Yes, your belly will be poochier because of the enlarged kidneys but it is worth  it, unless of course you are in lots of pain because of them.

Each transplant center has a different protocol for these situations so you have to go by what your transplant center says.

Good luck!

[Cordelia]

I'm thinking you're right, it's different protocol for every transplant center.  And yes, I'm thinking too one has to go by what they say.

[Des]

MM, I was very upset when my urologist told me this. I said EXACTLY the same as you, it's as easy as 1-2-3!          Why not?! It makes sense to do it that way but as Restorer said, yes, that's why.  I was disappointed because I thought it could all be done in one surgery too. Why go through 2 general aneshetics?    I figured.....

I hate to know how much weight my cysts are inside of me, my tummy is always looking poofed out. I wonder once they are gone, how much weight I will lose instantly?            Even though I have lost 65 pounds since I started dialysis, likely because of the renal diet.... I can't seem to get rid of that jutting out tummy.....I know its the cysts.      My left enlarged kidney has actuallly caused my left side to look lobsided-jutting out of my body....if I look at my body in the mirror while standing naked........

When I suggested the idea of getting rid of my old kidneys, my urologist was't impressed. I told him I'm in a lot of pain, which is true....I get stabs of pain in my flanks and back.  I may have to do some pushing, he seemed uninterested doing the added surgery  but I think  have a good case to have them removed.    He told me I had 'room' to plunk the new one in. 

This disease has held me back doing things I want to do.....I want to do gardening and I want to jog and I can't with this pain.    I will not let his disease take over me and I will fight to  the fllippin' end if I have to to have these  diseased kidneys removed.     I wanted them gone now but they won't take them out before transplant because I have always urinated and that urine is like gold when you're on dialysis so they refuse to take them out now.     I've lived with the pain long enough .......I can't wait to get rid of them, they've been nothing but a thorn in my side for esp the last 20 years of my life!!!

Hi, just had to reply to this.

I had my VERY painfull left PKD kidney removed. I have been in turmoil ever since. From a medical point I should have kept it as it still had some residual function. From a  quality of life point it has been the best thing I ever did. My doc was horrified at me for insisting it to be removed and he made it very clear that I am doing this at my own risk. So please ensure that you think hard and take all the pro's and con's into consideration before you have them removed. You might feel guilty later on. 

[tstevens]

Okay, I have a questions. Not sure if I should start a new thread, if so I apologize.
I have PKD and the surgeon insisted both kidneys need to be removed a few months before a transplant due to their enlarged size.
He claimed he couldn't just do a switcharoo. The bad kidneys need to be removed, then I need to heal before I an get a transplant.
The information on this post seems to contradict this. This wouldn't be a huge deal, but I urinate freely, am only one twice a week for 3-1/2 hours,
and I eat what I want within reason. Getting both of my kidneys yanked out will have a huge impact on my quality of life.
Plus there is no guarantee when I will get a donor.
So my question is do you think I should try another hospital? I am currently listed at UCLA.
Thanks for advance for any comments or ideas!
Tom

[MooseMom]

Oh tstevens, that's a really important question, and frankly, I'm reluctant to say much of anything.  I think you are right in assuming that this would have a big impact on your life.  Fluid overload and fluid control is so important and so tricky, and if it were me, I'd think very long and hard about it and get as many opinions/as much information as possible.  The fact that you don't have a donor ready to go would really make me hesitate.  I hope someone with more experience with this will come by with some thoughts.  It's always been my understanding that having decent residual function can make all the difference.

[Hazmat35]

After reading all these comments, i think that I am reading correctly, that most people would suffer through with the pain, and keep the Kidney's because of the residual effects and possible side effects and emotional side effects of having them taken out. 

I am so confused.  My NEPHRO talks to me like it is sooooooooo simple an operation and he can't understand why i don't just get it done.  He says your Kidney's are serving no real purpose, since you are on Dialysis, so why suffer with all the pain. 

I'm so sick and tired of going to doctors and listening to peoples opinions.  Yesterday, a social worker at our center told my G/F, "i wish he would just go ahead and get it done."  (the kidney removal).  But when she came around to talk to me, she was very "understanding" about it but didn't say one thing to me in support of the kidney removal.  Sounds kind of two-way backstabbing to me. 

[Cordelia]

I know I will (Once I have a transplant) want mine out. Mine are affecting my quality of life. There are things I would very much like to do and can't because of the back pain. If my urolgist is headstrung not to do it, I will seek another opinion. I know there are risks to every kind of surgery, but I think personally for me, in my opinion I need to have this done.