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Pre Liver Transplant

Is anyone else waiting for a liver for transplant? I've been waiting over 7 months with only once I was the primary and the donor liver was too big and I've done 3 stand by's.I wanted to know how long others have waited or are still waiting, is my wait normal. My MELD is 28 and I'm 3rd on the list with 3 cancer patients ahead of me that I'll probably have to do stand by for again.I just like to hear other transplant recipients and their wait times.Thank youjacquie

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  • Hi! I believe I read somewhere that the average wait time for a liver is around 1 year. I waited exactly a year for my new liver. Obviously, all situations are different and it depends on the situation. When I was a status 1A, for my second transplant I only waited a week though, so it all depends really. Good luck!!! You are not alone, the wait is hard but it's all worth it.
    • Katie, thank you for your encouraging words, it really helps hearing other experiences,me specially another woman, most of the people I talk to are men, strange huh? I had a really rough weekend, nausea and no energy kept me in bed all weekend. I wasn't hungry but my family kept forcing protein shakes on me so at least my muscles got what they needed.mwhen I went to the hospital for a month and a half,mi couldn't walk because my muscles had all artified. I had no strength to walk for weeks and after a high protein diet I was up and about. I couldn't handle it if that happens again, so when I lose my appetite I only get protein in me.
      I had a paracentisis to remove the bloat in my stomach I had put on 5 lbs. in a short time. My doctors keep asking about my fluid and sodium intake which is very low, I drink enough fluids to stay hydrated. I just can't take any more diaretics because of my kidneys being compromised, so I bloat.
      Thanks again for your reply your concern is deeply appreciated!
      • Of course, Jacque! I agree, I love being able to relate to others even if it's about unpleasant things, such as waiting for a transplant. I'm sorry you had a hard weekend, you are very strong! It seems like you have a very supportive family, which is incredible. I know I could not have thrived after transplant without my family. I truly hope you can continue to eat- and protein is always the best thing to maintain muscles. I was tiny before my transplant, and my bones hurt when I sat down anywhere, now, there is certainly no problem with weight gain!
        There will be brighter days. It is definitely a journey!! I am thinking of you, and I hope to hear a good update from you soon.
        • HI Katie, so good to hear from you again and thank your for your encouraging words! I know this is just the first step in my journey and it's the hardest, the waiting, fortunately God has taught me the valuable virtue of patience, which keeps me positive that my time and my liver is coming. I think I'm waiting right now because my husband had a heart condition and needs to go in for a procedure and I need to take care of him at home afterwards, so God is giving me just enough strength and energy to be there for him now and hopefully he keeps giving me that strength so I can get him on his feet again. I am more than willing to wait if I am needed by my family.
          I think I had high expectations because of my coordinator saying all the time that it will be any day now! In fact after our first group session I was so sure from her speech, that I was getting a liver right away and I went home and packed my suitcase. Now it sits there, empty, mocking me! Even when I went in to remove 50 lbs of fluid bloat I didn't take the suitcase, that suitcase is the symbol of my transplant. My kids and their friends keep bringing charms and stickers etc, to decorate it so when I get the call again I'll have something happy to look at and to remember each one of them by. So cute!
          Well thanks again for sharing and I'm so happy your are on your feet and enjoying life again!
          Jacquie
  • I have a bit of a unique situation in my wait. I'm waiting for a liver and a kidney, so I'm told my wait will be shorter than for either individually. My MELD is 28 as well, but I got extra "points" due to my disorder. They are guessing I'll start getting offers in 6 months to a year. I have very low kidney function, and a liver-kidney transplant is the only cure/ best route of treatment for me. I was listed just a couple of weeks ago, and am still feeling pretty good. I've noticed that I'm more sensitive to some things - like allergy meds, which make me more drowsy than other people- but aside from that I have pretty good energy and am not currently on dialysis. Best of luck to you, Jacquie!

    • I too have problems with my kidneys being compromised, so I can't take but a very small dose of diaretics and then I bloat. My last hospital stay was a month and a half I put on 50 lbs. in water bloat, mostly feet legs and not enough to do more than one paracentisis. So they had to monitor my creatin levels with blood work 3 times a day and kept adjusting my meds the whole time. My kidney doctor is really worried that I might end up back in the hospital and possibly on dialysis until I get my liver then my kidneys should be fine, no word of another transplant for the kidneys,mi hope that doesn't happen but no one can predict when I'll get a liver. They didn't do any transplants in Jan and only 2 in Feb. and this is the largest LifeLink hospital in Florida. Where are you?
      Jacquie
      • I did my transplant work up through the Mayo Clinic in Rochester Minnesota. I was just there yesterday, and it seems I'm stable for now, but I'm glad to be on the list so that it'll be there when I need it. I know the Mayo does many many transplants every year, and there is one in Florida.  Do you have access to go to the Mayo there?

        • I'm not with a Mayp because in Tampa, they use Life Link with Tampa General rated #1 in the state and their rejection level is the lowest. I've met my surgeon and I really like him,mif you haven't met your surgeon or your your surgical team then I strongly suggest you schedule an appointment, I found our interaction to be the most eye opening meeting ever!. Plus I'm 30 minutes away from the hospital, the other closest facility is either in Jacksonville or Miami. And neither of those have the credentials TGH does. I have that feeling it's getting close to a holiday, Easter and I have been in the hospital for one thing or another every single holiday since the 4th of July, Halloween,nThanksgiving,mChristmas, New Year Eve, St. Patrick's Day... So chances are I'll get some kind of call hopefully as a primary or my creatin levels go through the roof! It jus might happen.
          Thank you again for sharing yourself with me!
          Jacquie
          • No problem at all! I have met all doctors and surgeons, and I was impressed. The other major option I would have had is at the University of Minnesota, and the inadequate treatment is the reason I got sick in the first place, there, so I opt to drive an additional hour to get the best care within a reasonable distance to my house :).  I wish you the best!

            • I hear you!mif I thought my facility was anything less than the best I would drive anywhere to get the right care. When this whole thing started and I was looking at all the options I was ready to move to whatever facility whose program was the best,mi didn't care if I would have to get my own place if I had to. I got lucky that the best place for me was close to home! I have already talked to the support center about taking in any pre trans patients after I'm home and recouperated. I have spare rooms now that my kids have flown the nest and they have their own wing with bathroom and I can drive, cook and run errands for them. I'd like to help now but I don't have the energy to take care of myself right now, so that's out.mplus my husbands going in next week for a procedure on his heart, this whole household has issues! When they release him I'll need to take care of him at home, thank goodness my kids are old enough and so great they'll do anything to help us.
              I'll talk to you soon!
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