Transplant surgery scheduled for 10/23

I recently joined transplant friends as I am scheduled for a kidney transplant on October 23rd at Mayo Clinic. I have PKD and on my latest labs my creatinine is 4.93 and GFR is 12, so I am ready!! My sister is donating her kidney and has been amazing with everything that she has gone through to get approved. I will be having my native kidneys removed at the time of transplant and was wondering if there is anyone that has gone through this procedure and has any advice?

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  • Congrats Kevin!  You did leave us hanging!  I don't visit this site often but it's SO great to hear from bilateral nephrectomy/transplant patients as we are not a large group.  I've never met one anyway!  My surgery was 8-2-16 with a living donor (my sister!❤️) and I am also doing well.  

    My biggest problem continues  to be prograf with all the bad side effects.  My docs want me to try cyclosporine  and I'm getting to the point of trying it.  

    wishing you and Gary well and if anyone has cyclosporine experience out there please weigh in!  

  • Hi Kevin, I hope your bilateral nephrectomy and transplant were successful and you are doing well. I also had PKD. My native kidneys were so large, I looked like I was 9-months pregnant. My surgery was August 7, 2018 at UCSF. Like you, I had a living donor.  When they removed my native kidneys, they weighed almost 25 pounds each, so I immediately lost 50 Pounds. I went from a size 3XL to an XL. I know how you feel, and it's wonderful to have those removed, right? 

    I wish you well and hope for your best. Take care!

    • Hi Gary,

      Thanks for the email. I have not been good about staying connected here, but I did have my transplant and bilateral nephrectomy on 12/24/18. It was a pretty awesome Christmas present from my sister and the surgery and both recoveries went extremely well! I just had my 1 year follow up at Mayo and they gave me the thumbs up and I am now on 3 month labs and won't see them again until year 2 if everything continues to go well. I didn't lose quite as much as you, but I did lose 32lbs when they did the transplant and removed my native kidneys and I went from a XL shirt to M and my waist went from 34 to 32. I feel great and more importantly, my sister is doing awesome.

      I wish you well also and continued to health and happiness!


  • Kevn - I don't know if you had your rescheduled surgery. But if not, I had PKD and had surgery in May 2017. Had both native kidneys removed. Yes, it's a bigger surgery but I never regretted getting it all done at once. Everyone has some different aspects and reactions, but here's what I found that I wasn't told: I had quite a bit of nauseu afterwards for about 2 weeks. Very little actual surgical pain. It took me a while for my blood pressure to regulate. Within 3 weeks, I was well on my way to recovery.  So worth it. Good luck!


    • Thanks for your email Tom. My transplant is scheduled for Christmas Eve (my sister/donor told me that I am not getting another present besides the kidney...and I am more than ok with that :-)). We go in for pre-op exams this Friday and have our fingers crossed and are praying that everything goes well and we will celebrating christmas (or not) in the hospital. I am looking forward to getting the surgery behind me and getting my natice kidneys removed. My mom had hers removed 10 years after her transplant and mine are really large so I am anxious to make some room for my new kidney and all my other organs that have been crowded for years.

      • You and your sister are in my prayers. What a Christmas gift.

  • I too have PKD and had both kidneys removed and received a kidney from my sister!  We are a rare breed I have found.  I am two years out with sub 1 creatinine levels a generally good results for a transplant person on immune suppressants.  

    Your road will be longer than other transplant patients as the surgery is massive.  I am saying that as you are on the other side of the surgery!  Of you need someone who’s been there to communicate with just let me know. 

    You may not feel it yet but our bodies have amazing healing capabilities.  Wishing you success.  


    • Thanks for your encouraging email Ann. My transplant actually got postponed as they found I had an infection the week before the transplant and put me on antibiotics for 28 days. I will be tested agaiin next week to see if the infection is cleared up and if so, we will reschedule the transplant at that time. 

      I am very optimistic about the surgery and have complete confidence in the surgeon and the team at Mayo. My mom had a transplant in 1999 at the U of M and then had her kidneys removed at Mayo in 2009 and two of her siblings also had to have their kidneys removed, so I am happy that they are going to do it all at once for me.

      Continued success to you!!


      • Thanks Kevin.  My Mother also had PKD and had a transplant from her brother but she didn’t need her kidneys removed.  She was on dialysis for 5 years before the transplant but her transplant lasted 25 years and she died of something else at 84.  Hooray for our sisters!  

        Let us know how it goes.  

  • Go for it so you dont have to undergo another surgery. I had my transplant at Mayo dec 2016 and im now scheduled to have my native kidnies  removed at Mayo also this December.

    Good luck i 

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