Has anyone with PKD been told to have the kidneys removed and if so, did you?

[nholleger]

My doctor wants to remove both my large PKD kidneys.  Is this typical and has anyone done this?

[Sydnee]

I was told they may need to depending on how big they are when I get a transplant.
Do you know how big yours are? Why is the doc wanting them removed?

[Angiepkd]

I just had my PKD kidneys evaluated by the transplant surgeon, and he thinks they can stay. I don't have exact measurements on them, but they are quite large ( I look like I am 9 months pregnant). I was kind of hoping to have them removed because I look awful.  My younger brother had both of his kidneys removed prior to transplant. He struggled with the fluid restrictions while on dialysis, but is glad he had them removed.  I really questioned my nephrologist about the pro's and cons.  He said that unless the native kidneys are causing major problems i.e.. pain, infections, shortness of breath, then the dangers of the surgery outweigh the benefits. It is a major surgery that requires a big incision. Recovery is pretty tough. He recommended waiting until after my transplant and they could re-evaluate at that time. Unfortunately, they won't take the old out at the same time the new goes in.  Hope this helps!

[nholleger]

I don't think my kidneys are not huge. I think the left is 19 cm and right is 16 but I am also tiny. They are causing me to feel full all the time and I have repeated infections.  The surgeon wants to remove them during transplant. I don't know if I want more pain and recovery time.

[Joe]

If they are causing you to get infections, it's going to be best to get them out. The last thing you need with a new bean is something infecting you internally.

It' might extend your recovery time, or it might not. But in he long run you'll likely be better.

[Sydnee]

With them getting infected repeatedly I would certainly want them out. Not sure how much harder if any the recovery after transplant will be but should be worth it. Good luck on your decision

[Whamo]

Pray everything goes well with you.

[Angiepkd]

I would most definitely have mine removed if they would do it at the same time as my transplant!  My surgeon will only do it before or after 

[adairpete]

I don't have PKD, but I was told when I was evaluated for transplant that they want to remove my kidneys before transplant (chronic infection risk because they are FULL of stones).  I was okay with it at the time, having just started dialysis, but after doing hemo for awhile and absolutely hating it, I balked at removing my kidneys before transplant.  Life is much better on PD and removing my kidneys would mean doing hemo again, which I told my transplant nurse I would flat-out refuse to do-told I'd rather die of kidney failure.  She talked with the Dr and they've agreed to do the nephrectomy and transplant all in one (as long as I didn't have a kidney infection at the time of transplant).  Personally, I'd rather do it all at once and just have one surgery and one recovery, even if it was a little longer.  I can't imagine going through a major surgery, then waiting around for another to happen and be on hemo, but I can understand your reluctance to have 2 major surgeries at the same time.

[tstevens]

I have PKD and have been on dialysis just over 2 years. I was hesitant to have my kidneys removed because of the residual function. I was only doing dialysis Friday and Monday, for 3-1/2 hours. Labs were always perfect and didn't have to watch my fluids or pay too much attention to what I ate.
In March I had a cyst burst and spent 5 days in the hospital for pain treatment. A week or so after getting out I started  peeing blood really heavy. I ended up spending another 6 days in the hospital and received  2 units of blood.
These two episodes and the fact I looked 9 months pregnant were enough to convince me the time had come. I had been told by my transplant surgeon they would both have to come out prior to transplant anyway. So Friday, May 3rd I had a bilateral nephrectomy . Together both kidneys weighed just over 30 pounds. ( just under 15 K ).
So it's been 11 days since my surgery. I still am not walking to much and am still really sore, but hopefully that will be changing pretty soon. Every day is just a little bit easier.
Let me know if you have questions. Also, I have pictures of preop belly with or without shirt and pictures of kidneys in the tray after surgery. I would be happy to send to anyone who is interested, but the kidneys are a little too much to post without request..

[Angiepkd]

I have PKD and have been on dialysis just over 2 years. I was hesitant to have my kidneys removed because of the residual function. I was only doing dialysis Friday and Monday, for 3-1/2 hours. Labs were always perfect and didn't have to watch my fluids or pay too much attention to what I ate.
In March I had a cyst burst and spent 5 days in the hospital for pain treatment. A week or so after getting out I started  peeing blood really heavy. I ended up spending another 6 days in the hospital and received  2 units of blood.
These two episodes and the fact I looked 9 months pregnant were enough to convince me the time had come. I had been told by my transplant surgeon they would both have to come out prior to transplant anyway. So Friday, May 3rd I had a bilateral nephrectomy . Together both kidneys weighed just over 30 pounds. ( just under 15 K ).
So it's been 11 days since my surgery. I still am not walking to much and am still really sore, but hopefully that will be changing pretty soon. Every day is just a little bit easier.
Let me know if you have questions. Also, I have pictures of preop belly with or without shirt and pictures of kidneys in the tray after surgery. I would be happy to send to anyone who is interested, but the kidneys are a little too much to post without request..

Wow! Those were some massive kidneys!  I am going for my pre-op appointment for a hernia repair tomorrow with another of the transplant surgeons in the group.  I am going to ask his opinion of the nephrectomy for me.  Two weeks ago I had several cysts rupture and the pain was excruciating.  Luckily, this doesn't happen too often, and I had leftover pain meds from my last fistula revision.  I would've ended up in the ER without them. 

Do you feel better with them out?  Is it easier to breathe and eat?  These are two of my biggest problems.  It may be a little early to tell, but how is dialysis going?

Hope you continue to do well with your recovery!  Please keep posting about your experience, as it helps a lot!

[adairpete]

Holy Smokes, tstevens!  30 pounds of kidney removed!  And just over a week ago at that.  Good for you!  Hope you're feel better each day and that dialysis is going well.  I had no idea kidneys could even get that large!  I wish you a speedy recovery!

[Subeat]

30 pounds!  Wow!  Since finding out I had PKD, I have wished they would remove them.  Just the thought of them inside me gives me the heeby jeebies.  But they did have some function and allowed me pretty lenient fluid restrictions so I shouldn't hate on the too much.  My transplant surgeon told me mine are fairly small, and they would only be removed if in the way for transplant.  They weren't, so they remain.

[Hazmat35]

My Nephro has been on my for [5] years to get my Kidneys out, because the cysts are causing me such back pain on a daily basis.  He said that it would improve the quality of life! 

I went for the Ultra Sound, to double check the size of the cysts, and he said that there aren't as many cysts as he thought there would be, but that they are HUGE insize!  He backtracked from [5] years worth of advice, and said that he would recommend NOT to take them out, if I could continue w/ the pain.  If not, he'll take them out.  Or at least send me to a surgeon to do it. 

[tstevens]

Yes, 30 pounds is a lot of kidneys, but I don't think it is too unusual for PKD kidneys to get that large. My breathing is definitely better than before surgery but still a little shallow due to the incision in my abdomen, which I am guessing is around 15".  I still haven't much of an appetite, but I am sure it will be better than before surgery. I could hardly ever eat a full meal as the kidneys took up so much room I always felt full after a few bites.  So today is the 15th, making the surgery 12 days ago. I am starting to be able to walk around alright, I still haven't tried driving, but imagine I should be able to in the next day or two.
Again, feel free to ask if you have any questions...

[Angiepkd]

Went for my pre-op appointment for hernia repair today.  Was shocked when the surgeon asked me why I was having the hernia repaired instead of getting the nephrectomy.  I told him I was under the impression they could stay.  He agreed they could, but thought it would be better to have them removed.  They are quite large and are definitely impeding my breathing and eating.  Also, I have a huge cyst on my liver that they will drain/ ablate while in there.  The hernia will be repaired during normal closure of the incision.  While I had planned on asking him to give me his opinion on keeping the kidneys, I wasn't prepared for him to start there lol!  He did make a very important point in favor of the removal prior to transplant.  My disease is going to continue to progress, the kidneys are going to get larger, and the last thing a person who has a new kidney needs is to end up in the hospital.  The combination of immuno-suppressants, trauma of an abdominal surgery, and exposure to some of the nasty germs found in hospitals could place my new kidney at risk.  I have to admit I am scared.  I still have some function and good urine output.  Guess I have a lot of thinking to do!
 
I may regret this tstevens, but would you send me those pics you mentioned?  I think I need to have a better idea of what I am looking forward to.  Thanks!

[nholleger]

Good Evening,

I am so thankful for all the replys to my question.  tstevens, I too would like to see pictures.....I am nervous as well and want to make an informed decision.  Although I don't think I would ever have 30 pound kidneys they predict they are 15-20 pounds combined.  Keep in mind I am 5'3" and 130 pounds.  In response to another post I too have had cysts rupture that landed me in the hospital and I really never want that kind of pain again.  I am fortunate that I don't look pregnant - yet.  My transplant surgeon said that as I age it will become more apparent as I loose muscle tone. Yeah! 

My "bath tub" cath is healed really well and I have had 2 flushes.  I am scheduled for PD training on June 3 - 11.  I found a really nice bra that totally covers the exit and can hide the tube......happy with that!

:-) Nadine