Hi my name is Kelly and I have polycystic kidney disease (PKD) . My GFR is 12 and creatinine 3.8 and I would be starting dialysis if not for the surprise visit I got at work about 6 weeks ago from a man who told me he is my donor! All matched and approved (I was approved last year). I was so shocked, I couldn't speak - shocked and excited! I don't know my donor but he heard that I needed a donor through a newsletter of a club my husband belongs to and decided to make this incredibly generous gift to me. The surgery is scheduled for April 27th!

 

I don't get to meet with my surgeon until a week or a few days before the transplant. I have so many questions and it's making me crazy! My biggest one is that I need to let my boss know that I will be out but I have no idea what to tell him! I Googled 'kidney transplant recovery time' and it says anywhere from 3 to 10 weeks! I'm healthy other than the issues stemming from the PKD, so once I have a working kidney, I should be feeling much better. But I know there's a lot to adjust to beyond that with new meds, surgery healing, etc.  But since I have not met with the surgeon, I have no idea how long the surgery takes, what happens right after - do I just go to a regular room? How long I'll be in the hospital, what's the pain like, how do I wean off the pain medication I'm on, when will I be out of the hospital, how soon could I do computer type work from home, how long should I plan to stay out of work if everything went perfectly as a 50 year old woman who is not overweight, never smoked/no drinking /no street drugs.

 

What can I be doing now to prepare for this transplant, etc? They say it's their protocol to not meet with the surgeon until right before, so I guess I'll just need to hope Google is accurate and get information from people who have already had kidney transplants.

 

My Dad had one in 1984 in the same hospital, but it was a cadaver donor, he was very sick for the 10 years following the transplant until he died :( everyone promises me that things are so much better now than then and that my story will be different.

 

Anyway, I'm looking forward to getting to know you all and I hope I am able to learn some things and then eventually help others in the future. Thank you having me here!

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  • I met my surgeon in the OR on the operating table!  The transplant team should handle all your questions.  I work full time and returned 3 weeks later - but stayed away from any sick colleagues and disinfected my office every day.

    • Same, but to be fare after I was put on the list I had a liver transplant  next day. Guess that's the joy of the One A list. 

       

  • Congratulations on getting a match with  a live donor. I had my transplant 10 years ago when I was age 44. I took two months off of work. I went back full time from day one. It took about one year to adjust to my meds and that includes meds I received for side effects.

    i met my surgeon just before my surgery but was well educated by my transplant team and especially my pretransplant coordinator.

    My transplant took 3-4 hours, went to recovery room and then to a private room. I was there for four days.

    i asked to be taken off the pain meds because they made me sick. I used Tylenol and a heating pad. 

    They will get you up fast to get you walking. That hurts! You will be hunched over but it is so important to walk as much as possible. My live donor walked with me and we had some laughs which hurt so bad but laughter really is the best medicine.

    My donor named the kidney she gave me, Angelica. I spoke to her and claimed her as my own. I loved and was grateful for her and told her so everyday. I still do. 

    Although we had a zero antigen match she has never shown any risk of rejection-ever.

    my creatine is .096 and I ran the 5k Kidney Dash in CO last year.

    life will be good. Just be patient and do what they say to the T.

    Best wishes,

    Bonnie

    • Angelica - I love it! 

      I do not know my donor well at all. I have met him and he actually knows more about me than I knkn about him (and that's because my job is a little "high profile" in many ways. He's in my prayers though - that this all goes well, and he's able to get back to work and life. 

      I am very determined so I will get up -  pain or not - and walk walk walk, maybe even go to Mass if I'm allowed - anything i can to get out earlier! :) 

  • I agree with all of the other replies you've received.  While I was being prepped for surgery, the surgeon walked past the door, and the nurse yelled out at him, "Wouldn't you like to meet your patient?"  LOL!  I didn't care if I met him or not.  He's "only" the surgeon, and he will not be able to answer all of the questions you have.  Like the others have said, those are questions best asked of your tx coordinator; that's his/her job!

    The road to recovery is so very different from one patient to next.  For me, it was easy, really.  I was in on Sunday morning and out the following Wednesday afternoon.  I'm about the same age as you, and I was generally healthy, so I'm sure you will do well.

    • I agree.

      I learned out my surgeon was an urologist (not a kidney doctor) after many yearns of my tx. 

      He had nothing to do with my post tx care. 

  • Hi Kelly. I had a heart transplant 3-11-17. I saw my surgeon for approx 5 minuets before going into surgery, & once at 10 weeks for maybe 15 minutes.

    Not sure if it’s the same with a kidney transplant however the type of questions and information you are looking for  were provided by my Transplant Cardardiology Team.

    My pain was not nearly what I anticipated it would be. I rarely took pain meds. Dr.s encouraged me too, but I just did not hurt that bad. Worst thing for me were the drainage tubes which were in my lungs. Not sure if  you will have or not. 

    I was 55,and otherwise healthy. No previous heart issues, or family history. I was in the hospital 9 days, and started back to work at about 3 months on a part time basis, full time in Sept. I would have been able to start back sooner but had a pretty aggressive rehab, and transplant clinic schedule. Clinic appts, were 4 days a week for quite a while.

     Never found out what happened. Diagnosed 1-4-17. Pathology was unable to det determine what caused the demise of my heart, All we k ewwas it was fast and furious.

    Good luck, and blessings!

    • Wow that must have been a very upsetting and scary time - going from living your life to suddenly be in serious life threatening heart failure! Im happy to hear you are doing well now! 

  • I also have pkd and had a live donor kidney transplant done at Mayo Clinic. I never met my surgon at all before surgery and only twice after. Your care will be provided by your nephrologist not your surgon. The doctor will not be able to give you an exact answer because everyone reacts differently to the surgery the meds and there new organ. Just trust your doctors relax and look forward to feeling better with your new kidney. Best wishes

    • Thank you and congrats on your new kidney. I have developed a tremendous amount of allergies to everything related to hospitals and surgeries over the past several years - anaphylaxis episodes over antibiotics, surgical glues, adhesive tape, antiseptics they wash me down with , IV iron infusion nearly killed me, every time I start a new prescrption, I am that "less than 1% who have a moderate or serious reaction" - so I have mini freakouts thinking about all these new medications - both how much will this all cost me etc. :/

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