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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 just got the news I'm #1 on the transplant list my MELD shot up to 33. But my creatin levels are bad and they took me off the diaretics and I've put on 15 lb. already in bloat, take me off the water pills and I'm going to end back up in the hospital again. Has anyone else been through this? I've been on the list for 8 months and only been a primary once and a standby 3 times.
    I'm praying fervently that a liver become available soon so I can stop going through all this. The lack of energy, nausea, aches and pains from constantly sitting in a chair or laying in bed. My appetite is off and on so its hard to get the amount of protein I need, I hate the supplements they're so thick and chalky, and I can't cook so if I order from a restaurant I have to worry about sodium levels. And my fluid intake is now 1 liter and I live for a glass of ice cold water, I could drink a gallon a day if I knew it wouldn't hurt me!
    If anyone has any ideas, suggestions, opinions or prayers please send them my way!
    Thanks everyone for taking the time to read this!
    • Hi Jacque,

      I too had been standing or sitting in your shoes. The water, I weighed 90 lbs of just me plus 70 lbs of fluid racing around my entire body. My mouth was like a dried cotton ball no matter how much liquid I drank , which wasn't much. I am with you , I understand completely and will pray for you. I had acute liver failure which caused my liver to go quickly than a domino affect , kidneys next...... meld score went to extremes...up and down from 17 to 37 ..I was at Stanford , where the waiting list is long, but we had a prayer circle.... going 24/7. Two people ahead of me for the same donor liver, they refused it I took it. Turns out the liver ( very grateful to my donor) was healthy and a good match. So have faith , you are about to get your dream.... life is excellent now. My energy is beautiful, scores perfect. I do exactly what my co ordinator tells me to do.... back to oil painting, teaching and enjoying life.... oh , I had my liver Tx August 9 2016. This happened last year today I had liver failure.
    • Hi Jacque,

      Your post brought back a flood of memories as word by word you described my horrors of last November. It is very frustrating, as you indicate, to have so much fluid on-board and yet to increase the diuretics proportionately would be ineffective.  I'd like to volunteer that this is what it looks like in the life of a LD victim just before they become the victor.  You are on the verge of receiving that long sought and long needed solution so try not to worry.  Continue to trust those who have gotten you through the illness to this point and I do pray that all goes well for you.  I remember ... my idea of paradise at that time was an ice cold glass of water.  

    • Jacque, Here's praying that your stint in the #1 slot gets results pretty soon.  Congratulations!

      If you're following the Doc's instructions I cannot think of a thing you can expect keep like you are.  I'm praying for you!

  • Jacque, if one thing is certain it is that each of us has had a different experience.  I have been very blessed in mine.

    My first two days were rough in ICU.  After that I never had pain.  Never took a pill for pain.  I was up and walking on day 5 or so, just a few steps.  But by 8 days I was walking the floor around about 5 times, 3 times a day.  By 2 weeks even more.   I was back at my desk job at the 2-month mark, but still not 100%. 

    Post transplant, I had no pain, no swelling, etc.  I had a lot of recuperating to do those 1st 2 months and slept alot.  Naturally had to.  

    When you get a liver (and you will), your experience will be unique.  You will do fine.  DOn't rush it, but do what the Docs say.  

    I sent you my cell number again.  Call anytime tomorrow after lunch if you want.

    • Steve thanks again for your sharing your personal experiences with me,MIT really helps to know some best and worst case scenarios so I can be kind of prepared. I know I'll be different in my recovery, but I'm doing everything I can now the workouts, walking, protein and trying to be as active as possible, it's hard because I get austere so easily and sometime I sit down and just fall asleep, wherever I am. I can be waiting for an appointment and they need to wake me up because I just drop off.
      I don't know if you are a praying guy but God has answered my number one prayer. My husband is my sole care giver along with my kids, he has a bad heart and has been going into a-fib a lot lately well to be selfish, I need him whole and healthy for when I'm released after transplant so this week his heart surgeon is going to do another Eblation which shocks his heart and he's fine for years after. So my prayer has been answered and I know God is watching over me which makes me feel so warm and blessed. God taught me the virtue of patience when I was getting extremely impatient at the. 3 month mark, but now I know it's in His timing and the heart will come my way when it's my time and I'm fine waiting that I want this to be a perfect transplant and no chances of rejection!
      I will be going back and forth with my husband, my kids are driving me because I don't have clearance to drive because of my dizziness and falling asleep at every random time. But once he's done and comes home I'll have to really buckle up and step up to help him or I'll have to call in a nurse because I want the best the best for him and I don't know if that's me!
      Well take care of you and keep writing you make my day!
      Jacquie
  • Hello Jacque, I waited 9 months for my transplant. They were many of the nights I would wake up cold and itching.  I was diagnosed with HCC and Cirrhosis, so I had a massive weight gain (that was how I found out I was ill) which was brought under control by medication.  I took 6 months for one lung to completely drain.  The problem was when I lost weight and I kept losing until they stopped the cancer from growing.  When that treatment was complete weight came back, but I continued to weaken, but still managed to go to the gym at least 2 days a week.

    I was called once to the hospital (6 hours drive) but after getting to pre-op was told the liver was no good and to go home.  What a downer that was, 6 hrs. back home.  I was called a couple of times to see if I was local for standby and the last call they told me I was #1 so it would be any time.  3 days later we made the drive again and here I am now 2 years post transplant and doing well. I was given a "large " liver. 

    So good luck on you wait it may not seem like it but the gift that you get is well worth the wait.  .

    • Michael thank you so much for your reply and sharing your story. I have resigned to Gods lesson of patience, the right time the right liver, it will all happen when it's my time. I'm still going through weight gain and getting a paracentisis to remove fluid from my abdomen but my kidneys are very jeopardized and the fluid keeps coming back and I can't take the diaretics that I need to remove the bloat. My fear is that I gain the weight like before and end up in a wheelchair and in the hospital for over a month, I love my doctors and the hospital and staff are great but I love being home with my fur babies and in my house surrounded by my plants and gardens. I'm weak as all get out and can't do much but sitting at home is better than lying in hospital bed, being a flobotomists pin cushion and being woken up every 4 hours for vitals. I am so happy for your recovery and your new lease on life. How long was your recovery? What was the hardest part?mdo you have any side effects?
      Thanks again for your concern!
      Jacquie
      • It took me a little more than a year to stand for extended period of time without my abdomen hurting and needing to sit. Side effects, I still cannot turn around without losing my balance a little and I have to take high blood pressure medicine. Other than that I have no issues.
        • Wow, I already have all those symptoms. Can't stand for more than 5-10 minutes, climbing stairs and I'm out of breath where I have to sit because I'm so dizzy. I have bad balance and run into stuff all the time. I'm on Mitodrin 3 X a day for my blood pressure.
          Are you still in pain from the incision? How did they treat your pain post transplant? I'm told you need to take a ton of drugs and stop taking vitamins. Is there anything else you would do in a normal day that you had to stop? What about your diet, right now I need to get 100 grams of protein which is really hard because I don't like the supplements and shakes very much. I also have to stay under 1,200 mg of sodium leaving most foods tasteless. And I need to keep my fluids under 2 liters. Post trans what should I be told to do? How soon before you could go back to work, don't have a job per se I just help my husband with the paperwork at the car dealership he works at instead of hiring and paying an assistant he makes better money. Are there any other surprises I should be prepared for? My doctors and coordinator make it sound really serious right after I leave the ICU and getting up walking is vital to my recovery,mdid you experience anything like that. I'd much rather hear from you, someone who has been through this. And I appreciate your care and concern! Thank you,
          Jacquie
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