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I'm on the kidney transplant list.  I think I am getting close as I was called as a back up.  When I have my transplant, I will have a polycystic kidney removed.  I am wondering if any of you have had this procedure all done at the same time.  I didn't realize how frightened I am by it all until I got the call and realize that this will be happening probably soon.   My most concern is pain.  How do you let them know if you are in a great deal of pain if you have a pipe in your mouth.  Afterwards do you hurt all over where they had to cut the cycts away from other organs.  I have heard they try and keep you comfortable, but is this really true?  Would love to hear how it went for you if you care to share.  Thanks.

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  • Jenny - I am sure everyone's experience is a little different, but here was mine. PKD, had both my native kidneys removed 18 months ago and got a transplant. Pain wasn't severe, but your body needs to recover and get used to medication. That may take a few months. I did have nauseau for about 2 weeks. I had some pain around my scar, learned if you massage it it breaks it up and stops it sticking to organs, etc. It's amazing how after just a month or two you can turn the corner and get back to good health. I hope that for you. Good luck!

  • I had my surgery two years ago.  All’s well.  I have challenges with the drugs but my new kidney is going strong.

  • I have PKD and had BOTH kidneys removed at time of transplant.  You are out cold for the surgery and won’t feel a thing.  Most of the discomfort comes from your body trying to figure this new arrangement out and the early drug regimen.  They will manage your pain with drugs.  

    Try and focus on what all of this will do for you!  Wishing you great success!  

    • Thank you for taking the time to reply.  How are you doing now?


  • Hi Jenny,

    I was diagnosed with polycystic Kidney disease and hepatic fibrosis of the liver as a child.  I was 10 years old when I received my transplant. They did both liver and kidney at the same time, but they left my polycystic kidneys. They said over time they would shrink up and no longer function. My transplant was 23 years ago but I can remember alot. I remember not really feeling anything while I was in ICU. My parents had explained to me that they had given me something to kind of temporarily paralyze me. They kept me very comfortable with pain medication. I had some of the best nurses and doctors! I remember after being able to finally get up and start trying to walk again I was pretty sore. I walked a little hunched over at first because of the tightness I felt in my stomach. I wore sweatpants and lots of elastic for a while lol but I do remember recovering rather quickly. Best of luck to you and many prayers, if u have any more questions or would like to talk please feel free to message me :)


    • Thank you Megan so much for the info.  I am happy you are doing well.

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