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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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  • 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!
    • "Offer".  What a word they use!

      I was in a hospital bed after being listed for only a few hours (yes) and the Doc walks in tells me they have "an offer" of a liver for me.  So, of course, I asked since someone is offering it to me, how much do they want for it!      The Doc just kind of stared at me. :)

      • I know what you mean they said offer when I was the primary and they said a possible situation for the stand by's. When I went in as primary they explain everything about the donor having had a form of Hepatitis a long time ago that was treated and they were sure it was a clean liver. When I did stand by it was the same guy the first 2 he had cancer but both livers were bad. I don't know what happened to him after that because he wasn't the person I did stand by for the third time. I told you the liver was too big for me and my MELD score was 32 at that time up from 28. I'm at 29 now because of creatin and my kidneys. I started swelling again and went in last week for a paracentis they drained 1 1/3 fluid oz. this time it hurt like the dickens, especially when they were extracting the needle, it was suction onto my bowel and had to have fluid flushed to break the suction OUCH!!!
        Hey did you ever send me your cell #. If so I missed it again, I know I accidentally erased it the first time, sorry.mlike I said if I cut the call short it's because sometimes talking about it triggers me and I get really nauseous. I know that sounds wierd but my mother in law called tonight she has had the flu and was telling me about all her symptoms and I had to get off the phone.mi guess I easily susceptible to hearing about any illness, I know I sound crazy!
        Well I hope to hear from you again soon, there is only 3 others that have contacted me through the site and I appreciate all of you and your concern and advice.
        Thank you,m
        Jacquie
  • Hi Jacquie,

    I thought I'd share a few words about my experience with Tx.  Once I got on the list (in which the nephrologist was very helpful) the wait was relatively short because my MELD was around 35 and, thank goodness, a liver became available.  The liver that was offered passed all tests but there was a history of some drug use with the donor.  We decided to go with it because of my condition.  I have no regrets at this point, the liver is working great.  I know it's scary and frustrating, waiting for the organ, but I'm with Steve.  I think your wait isn't out of the ordinary and I think you're doing the right thing in occupying yourself with information gathering.  One cannot gather too much information or too much support.  It's a trying time, to be sure .... but so worth it!  I have some residual issues but nothing compared to where I'd otherwise be.  My skin is hypersensitive to heat, I have places of extreme itchiness, neck aches, stiff joints and achy muscles, high blood pressure (controlled) and vexing forgetfulness.  There are also some emotional issues ... some guilt, some aspirations I may not be able to fulfill.  It's all manageable and pales relative to the way I was before and would otherwise be.  Good fortune to you as you continue on this road to an improved life!  You are being changed for the better.  You'll be a different, improved person!

    Duane

    • Hello Duane, Thank you so much for your reply and support. It means so much to have others out there that have gone through this share their stories with me.
      I did have a score of 33 and was called in as a primary for the first, they were so sure the liver was perfect they didn't even call in a stand by. But, it wasn't meant to be, the liver was too big. I don't know how they couldn't determine that before they had the donor cut open and saw the liver and they scrambled to call in someone below me on the list. I was devastated! This disappoinments is overwhelming. Myfamily needs me well to take care of them not the other way around!
      I'm sorry to hear about some of your side effects. But I have a lot of those already, I have had arthritis since I was a teenager and I'm treated with pain meds, I also itch, especially my head. Instead being susceptible to heat, with me it's cold, if I get chilled I can't warm up. I'm helping my memory by playing video games that make me think and that seems to be helping. Maybe something you can try.
      Well I thank you again for replying to post,mi really appreciate your kindness and concern!
      In His Holy and Pwerful Name I Pray!
      Jacquie
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