Nephrectomy or no nephrectomy?!? Any advice? Please help!

[Angiepkd]

Hi all,  when I went for my pre-op appointment for my hernia repair, I was shocked when the surgeon started with, "I am not really sure why we are going to repair this hernia when you really need to have your kidneys removed. You also have a huge liver cyst that needs to be ablated.  We can fix that hernia when we close you up."  Huh? The other surgeon said my PKD kidneys would stay.  I was planning to ask for his opinion, but was caught off guard by him starting there.  I have been researching like crazy to see how the nephrectomy affects dialysis.  My younger brother had one prior to his transplant, but just says "it sucked".  He means the fluid restrictions, but he did in-center and I do home hemo.  I have seen several posts about this and was wondering if anyone thinks the kidney removal was a good thing.  Right now I am torn.  My stomach is very large.  I have trouble breathing and eating.  The liver cyst is causing tremendous pain that goes up to my shoulder.  My doctor does not prescribe pain meds for PKD related symptoms, so I have periods of time where I can't sleep or get comfortable.  That being said, I do not want to put myself in a worse situation.  So confused and scared.  Any experiences, both good and bad are greatly appreciated!  The surgeon made one point that has stuck with me.  If I need to have the big kidneys removed after my transplant, I am putting my new kidney at risk.  The last place an immuno-suppressed transplantee needs to be is in a hospital.  Too many germs, etc.  That part makes sense.  Thanks for listening!

[Sydnee]

I have no idea.
My kidneys have never given me much trouble and no pain (until very recently). But I have a cousin that has had repeated infections and lots of pain.

Are you sure the kidneys are causing the eating and breathing problems not just the fact you are on dialysis is?

Yep we each have a big belly. I can see good reasons to go ahead and do it and good reasons not to. Unfortunately only you can decide which is the best.
here with you thou!   

[Angiepkd]

Are you sure the kidneys are causing the eating and breathing problems not just the fact you are on dialysis is?

Yes. The eating, breathing, sleeping problems have been happening for several years, but I have always just dealt with it.  I am willing to continue to deal with it, but the thought that it could get worse post-transplant has me scared.  The liver cyst is causing terrible pain right now, but I am pretty tough.  The surgeon thinks quality of life is at stake, as well as potentially having problems with the new kidney down the road.  I guess that makes sense, but it is a massive surgery with a tough recovery.  Just feeling like I can't take much more lately.  I am continuing to research, and will have to make a decision before next week when they will call with a surgery date.  I am trying to be as informed as possible prior to that. Thanks for responding!

[MooseMom]

I have no idea, but I just wanted to encourage you to continue researching this. Let us know what you decide.  I'm for anything that gives you a better quality of life.

[Angiepkd]

I have no idea, but I just wanted to encourage you to continue researching this. Let us know what you decide.  I'm for anything that gives you a better quality of life.

Thanks MM!  Will keep you posted.  Hoping for some insight from those who have been through it!   

[staceyand joe92]

I was told during my transplant screening that it would be safer to leave the PKD kidneys in unless I started needing "serious" pain meds daily. I received my transplant on Dec 3 09. I was still having a hard time breathing while I was lying down and eating. I constantly felt like like someone was squeezing me. I finally discussed the issues again with my nephrologist about having my kidneys removed.  My doc was encouraging and supportive and scheduled my appt with a specialist. I had a double Nephrectomy in Nov 2012. I can tell you that the surgery isn't for wimps. My kidneys were both larger than a football. My hospital stay was 4 days and I was sent home with a compression girdle and pain meds. It was a few months before I felt like myself again. The pain was minimal once I was released from the hospital. The surgery was extremely worth it. The only complication I had was fluid build up on my lungs. I went into the ER with chest pains about a week after surgery. I wasnt breathing deeply enough to get all of the anesthesia out of my system. My body didnt know how to take a deep breath because I had been breathing so shallow for so long due to the size of my kidneys. The fluid was drained from my lungs and I was sent home shortly after. It was a hard decision to make. I was on dialysis two yrs and I knew my native kidneys werent working but it was still scary to finally decide to have the surg. It is a complicated surgery and you need to research techniques and docs before you make a decision. I asked my surgeon a zillion questions and once I felt like he understood my concerns it was a much easier choice to make.

[Angiepkd]

Thanks for the information, StaceyandJoe!  I really like the surgeon who will do the procedure.  He will be using the HAL (hand assisted laparascopic) technique.  This still requires the large incision, but uses the laparoscope to make all of the disconnections.  The only thing the large opening and hands are used for is to pull the kidneys out. I am looking forward to being able to breathe and eat, but dreading the fluid restrictions.  Fingers crossed that it all goes well.  I know it will be a rough recovery!  Thanks again!

[Sydnee]

I'm not sure how close to normal  laparascopic surgery is to HAL but thought you should know about this. I had gall bladder surgery in 2010. It was done laparascopicly. It was supposed to be a out patient surgery, I was in the hospital for a week in more pain than I had when giving birth. They inflated my abdomen with CO2 so they could see and use the implements. Most people have an easy time expelling the CO2 but I couldn't.

I can't drink carbonated drinks either. I have horrible abdominal pain from drinking a small 6 ozs of pop. 

If you can drink pop you are probably safe, but I would have like to know before hand.   

[Angiepkd]

Thanks, Sydnee!  I have had several abdominal surgeries in the past, but not sure if they used the CO2 or not.  I don't have any issues with carbonated drinks, but I will definitely keep what you said in mind.  Fingers crossed that I don't have the same trouble you did.  I will be in the hospital for 4-7 days.  Thanks again for sharing your experience!

[kit78]

No idea here, only a share.
I also have PKD and was told in 2001 when I got my transplant that they do not remove the bad kidneys because they are still working in some capacity. I lost my transplant last year and they said they will not remove this one either unless it causes terrible pain.  I hate having a big stomach.  Plus when I got my transplant they had issues so they cut me from left to right and up, so my incision is 18 inches.  Now I have a lovely stomach hang and have to find clothes that cover it. All shirts have to be 30" in length to cover. I'm one of those woman that DO look in a mirror!  LOL
So I feel for you as I would like my kidneys...all 3... removed and my stomach repaired back to normal.   
Good luck with your decision. Peace & Blessings.   

[Angiepkd]

Thanks kit78!  I had my monthly appt with my nephrologist today and asked his opinion.  He said that prior to transplant a CT would be ordered to evaluate whether the native kidneys should stay.  He felt that the CT scan I had for the hernia was probably a blessing in disguise, as it sped up that process (I am still waiting for insurance approval to begin testing).  In his experience the nephrectomy is a tough surgery to recover from, but he thought it would improve my quality of life and protect my new kidney after transplant.  I have some significant pain and have been hospitalized for infection in the past.  He did not feel like my kidneys would shrink post-transplant, either.  This is a really scary decision to make. It is a big surgery with significant risks.  Aside from the lengthy recovery time, fluid restrictions can be extremely difficult, too.  Even so, I think I am going to go ahead with the procedure.  I want to be as close to "normal" as possible after my transplant.  I am hoping this surgery is a step in that direction.  I want to be able to sleep through the night comfortably, eat a normal sized meal and take a deep breath.  Not wearing those giant shirts would be nice as well.  I hope I am doing the right thing.  I guess I will find out soon enough!