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To wait or not to wait...

Hey all,

I've been blessed with great doctors who preemptively got me on the transplant list. My kidney function is currently at 22% and it could stay that way for years - or it could decline tomorrow. Due to my disorder, I need a liver transplant to essentially cure (most effective treatment) the genetic disorder that caused my kidney failure, as well as a kidney. I'm currently feeling quite well, while I understand I would feel better at a higher function, I've been thinking about at what point I would jump on an offer. I know I wouldn't take a low matching set of organs, but what if the "perfect" match came along and I was still feeling okay, and not eminently needing dialysis? Curious to your thoughts.

Thanks!

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Replies

  • I went through preemptive kidney transplant. my gfr is 23% and my sister was willing to donate her kidney to me. I decided to give it a go as we are heading towards that way anyway. better to have it now while I'm feeling better than waiting for that "right" time. I have my new kidneys last month, may 16. hope everything will be fine.
    • Thanks, Louie! I'm glad it worked out for you! I have at least another 3 months (for the average wait time) to start getting offers. I'm lucky to say that I'm still feeling well!

  • Depends on where you live.  For example, here in Seattle, WA the average waiting time for a kidney transplant is/was3-5 years.  However, in places like LA, New York, etc wait times are shorter due to a larger population (and therefore donor pool).  I went with a pancreas transplant that was only a 2 out of 5 markers match and it's doing fine.   I'd ask your doctors, of course.  

    • I am currently active on the list and was told it would be about 6 months to a year before I start getting offers. I'm in Minnesota. I'm about 2 months into being on the list.

  • I actually thought one had to be at 20% or below before they would place you to be active on the list, I would think you are on the list but an "inactive" spot, This means you are gaining time on the list, but you would not get the call because you are not active. I could be very well be wrong.

     

    • My gfr is at 20 currently, but a renal iothalmate clearance test showed I have 22% function. I'm active due to this, but I'm just on that edge. I'm hoping to stay well as long as possible.
  • Hi Heather--

    I was in a similar situation.  I was diagnosed with a liver disease.  The year before my tX , I was not that sick. 2015-2016  I was ill, but I could still live my life and go outside and run errands etc. I got married two months before my transplant.

     I was living in LA but had my doctors in my hometown of Philadelphia.  

    I moved home because I was feeling not the best but still OK.  I got a call after being active on the list for only 3 weeks.  I decided to go for it. It was a perfect match for me.

    My best advice to give you, is take the best option when it is there.  Being healthy and going through a transplant gives a more fighting chance at getting back to your life before you started declining.  If you go in and you are near the end, your body won't be as strong to fight through the challenge of accepting a new liver and kidney.  

    When I got the call , I was SO grateful I could go in then. Even though I could have lasted for a while longer, I didn't want to decline anymore and have to fight harder to get healthy after the surgery.

    I hope this helps.

    Take Care.

    Alicia

    • Alicia,

      Thanks for your insight! We'll see when the time comes that I start getting offers what is available, and how I feel. 

  • Hi ,

    I've had the same experience last July with kidney failure. at 22 percent i decided to go for a pre emptive transplant.

    the medicine is the only regret i have, acne, mood swings, my body just does not  feel the same . if you can buy time and a donor will be ready by the time you need it then  i would recommend you wait. this is my personal opinion. Good luck    

    • Thanks, Maz! I appreciate your thoughts on this. I'm still a bit out from getting offers, but it's always on my mind. I also have a desire to loose weight before jumping the gun, because my doctors tell me I'll have an easier recovery if I'm at a healthier weight.

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