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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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  • 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
  • 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
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