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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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    • "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
  • Jacque,

    First of all, welcome to our little world!  Sorry your'e in it, but hope we can help you on your journey!

    From what  I can tell on these boards your wait is not totally abnormal.  Your MELD is definetly in range for transplant but you're not high enough to be primary.  On the other hand it's not 35 or higher so you're still doing pretty good!  

    My liver wait was a little shorter than yours.  I was admitted with a MELD of 35.  After doing a bunch of tests to see if I was fit enough for transplant I was put on the list and admitted to the hospital. I was not allowed to go home.  Then 2-hours later my precious donor didn't need her liver any more and it was offered to me! You read that right:  2-hours!  

    I was just very fortunate.  I wasn't going to live much longer without it.

    You keep yourself ready spiritually, emotionally, and physically.  This journey is not a sprint.  It's a marathon.  You can do it.

    • Thank you for your encouraging words! They really give me hope. My MELD was at a 33 at one time and that's when I started swelling up gaining 50 pounds in fluid. I was hospitalized for 1.5 months to reduce the bloat and even then no liver! Another stand by, someone with cancer. Can I ask how your donor was able to just give you their liver? I was told my donor would have to be deceased. Did you getnanpartial transplant? How are you feeling now? Have you had any complications? Do you feel better? I wish you were sitting in the room with me so we could talk, but instead I will pray for you and thank God that you replied to my post to give me the hope and encouragement I needed!
      Thank you my transplant friend!
      Jacquie
      • Well, of course, my donor was deceaed.  So she didn't need it any more!  

        I'm 57 years old so I have a few problems I think I would have had even w/o a TX.  Arthritis in a few joints.  My blood pressure is a tad high but so was my Dads.  My blood sugar is still normal but higher than I'd like.  But so was Mom's.  Otherwise I'm doing great!  I've had zero major problems and darn few small ones.  

        I've gained too much weight, but that's my own fault.  I like to eat and am not getting enough exercise.  I do feel much better.  Leading a normal life with no issues.  I have gotten sick a little more often due to the immune suppression and the severity of those illnesses was more.  It pays to be very cautious and avoid infectious folks, use lots of hand sanitizer, etc.  

        I was holding water pre-transplant but not as much as it sounds like you are.  One concern is that liver failure can damage the kidneys.  The sooner you transplant the better.

        You can list in multiple transplant centers.  It's not unheard of.  I did not.  

        • Steve, I really enjoy reading about your health now, it sounds like the transplant saved your life, what a blessing. I've never really had a weight problem until now, it's mostly water and lack of energy leads to not exercising. I just don't have any desire to do anything, I actually could sleep all day.
          I have to invest a lot of protein so I do supplements, shakes, bars, puddings etc. I could never get enough protein with just food. A steak or a lobster and I'm full not nearly enough protein. So I try to put almond milk and or protein powder in anything.
          Did you have any problems with protein and being really tired and how did you deal with it. I know you didn't have to wait long but leading up to your diagnosis.
          Thank you again for replying to me, it's nice talking with someone who knows what I'm going through, I've been pretty lonely going through this on my own. Please stay in touch, you make my day brighter with your words!
          Jacquie
          • I was not aware of the protein problem pre-tx.  My body consumed my muscle.  The tx surgeon commented that I was "wasted" internally, i.e. muscle just gone.  I think I lost about 35 lbs.  And yes, I was sooooo tired all the time.  Uh!  I napped at lunch, after work, every chance I got.  

            I'd be glad to chat on the phone with you if you want.  I'll message you my cell number and we talk tomorrow afternoon if you like.

            • Im ii so sorry I accidentally deleted your post with your cell number, could you please resend it.,I would love to talk to you about your ordeal?
              The reason I'm taking in all the protein is to keep my muscles from a trifling and doing what yours did. I was constantly straining the muscles when I had all that extra water weight. I actually couldn't walk at one time and the pain was ridiculous! I had to go by ambulance to the ER and that started my month and a half stay. The doctors had me on 100 grams of protein a day, Boosts, shakes, pudding, shots, BURN shakes, protein powder in everything, I really hate the taste of protein supplements it's sickening, but I can walk my dog, climb the stairs and do the shopping. I didn't need my PT anymore, I just exercise when I can and do what I can.
              So text me your number so we can talk, sometimes I will need to cut a call short because I work from home and those calls are my money!
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