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Liver

What did you feel when you got a phone call?

Juliam2106Care Partner
October 20, 2021 in Liver

My husband is 47 years old. He has cirrhosis during the last 12 years, a year ago, doctors found 2 small nodules, and diagnosed HCC. They put him on the list, his score is 14, but week ago we got our first phone call. We spent whole night in the hospital, and were ready for the surgery, but it was canceled because donor’s liver had fibroids. It was the most stressful and scary night in my life. I am afraid to get a call again, but I know this is our chance. We have 2 kids, 9 and 13 . We love our daddy so much! It was so difficult to see how our kids cry, hug, and say “Buy” to us. I am so afraid of this surgery!!! Can you please share your experience? When did you get a phone call? How much was your score? What did you feel? How difficult was your recovery? How long was your stay in the hospital?

1 - 22 of 22 Replies

  • KarinExpert
    Transplant Patient

    Hi @Juliam2106 ! I hear you re the feelings upon getting the call… I must tell you that when I got my call for my pancreas, I was excited to be getting my transplant and eager to move fwd with my life! The first call did not hiked a surgery though since the pancreas, similar to your liver, was not viable for surgery and I was sent hike again… I did not have to wait very long time for the next one and when that call came, I was eating lunch and having champagne)). I quickly stopped both activities and got myself prepared for surgery. Of course it was scary to think about the lengthy procedure I was going to partake in, but in some odd way, I was excited too and wanted to see what life would be on the “other side” of living with type 1 diabetes.

    October 20, 2021
  • bhameisterTransplant Patient

    Hi! I am 1 1/2 years post liver transplant. When I was diagnosed with Autoimmune Hepatitis and put on the transplant list, my MELD score ranged from 28-30. I got a call at 6am on a Sunday and we made our way to the hospital. I got all the prework done, got down to pre-op, and was told the donor liver was no good (had fibrosis). I then got a call 27 hours after the first one while I was at work. It was nervous at first, but then I knew I had a good group of doctors, nurses, and a supportive family. Both of the experience were different for me. The first being more fast paced with prework and then the second one a nurse reassured us that it was more normal. After surgery, I stayed in the ICU for two days and then was transferred to the transplant floor; so it was a total of a week in the hospital. Honestly I did have some rough days, but I kept myself positive and pushed through. Just remember everyone's recovery is different, but the people they have surrounding them is very important. Keep you head high and stay positive for you, your kids, and you husband. I will keep your family in my thoughts and pray he gets another call for a liver.

    Feel to reach out if you have anymore questions! πŸ˜€


    "There's no perfect life; You can't hold back time; But you hold on tight, hopin' you might find; Every page you've turned is a lesson learned; Ain't we all, ain't we all just tryna get it right? These are the chapters of my life" -Chapters by Brett Young

    **This was and is still the song I listen to on repeat. It is so true for anyone going through anything in life**

    October 20, 2021
  • Juliam2106Care Partner

    Thank you so much for your story! I’m looking for answers from someone who has been through this part of the journey. Wishing you all the best!!! God bless you!!!

    October 20, 2021
  • Saveddonna55Transplant Patient

    There is a good reason for whatever transplant we are blessed to receive. I imagine it was quite a let down when the liver was not a good transplant for your husband and the thing is you want what’s best for him…such a disappointment. I received two calls that I had to pass on because of weather and another reason. When I got my third call, I was excited!! I did not truly fear getting my pancreas transplant because I was feeling poorly before the surgery. However, when thinking about the risks I was scared. I hope your husband has gotten a new liver by now.

    March 22, 2022
  • StephenCFTransplant Patient

    I got the call on a Sunday afternoon while watching UNC in March Madness. I had just sat down and boom, phone started ringing. Normally (i.e. when not on list) I leave my phone on silent and have notifications off but obviously being listed changes some things. I had a feeling this call was the call. It was my only call, too. No dry-runs.

    I grabbed my to go bag, my "list", and rushed up to hospital. Twelve hours later I would go into surgery and here I am, 11 years later. My mood while waiting to see if the lungs were good or not was cautiously optimistic. I was comfortable with my decision and I had done everything I could, now it was out of my hands. Friends and family packed the room and whisked me away.

    I have to say I didn't think I'd make 11 years. I thought there would be more issues. I recognize how lucky I've been.

    March 24, 2022
  • Saveddonna55Transplant Patient

    Stephen CF, I’m so glad everything went smoothly when you received your one and only call. Congrats on 11 years. I don’t think you minded missing some of March Madness!

    March 24, 2022
  • AnnMarieCare Partner

    This is so important to talk about so you can be ready for what's is coming!

    March 30, 2022
  • DediazabreuTransplant Patient

    Hi everybody i had a similar episode but with my kidney transplant before the second transplant i was in the list and after 7 years waiting I received a call that there was a kidney but there was three patients including me that were compartible once i was in the hospital they prepared and at last minute tell me that the other patient was going to get it as sad as i was I understood once i got home i was so sad i went to sleep without eating and at 5 am I received another call that i was going to get the kidney because the other patient’s antibodies was extremely low and wouldn’t qualify for it so at the end of the day i end it up with the kidney and its been 15 blessing years at these moment im back on dialysis with two potential donors and on the waiting list hope everything goes great good luck

    April 2, 2022
  • gl437ysTransplant Patient

    When I got my first call I was really excited and scared. The waiting at the hospital was insane. Then I was sent home and told to chalk it up as a dry run. I was depressed for about a day. I then realized that if God wanted it to happen it would have. The following weekend I got the second phone call. I just went through the motions knowing that it might or might not work out. It did not work out and I was sent home again. A little depressed again but only for a few hours. As of today I am still waiting for call number three. All these were DCD donors. I was told that because my MELD was only 14, that a DCD donor was the best option. Has anyone else had a DCD donor transplant? If so, what was your journey like?

    May 13, 2022
  • StephenCFTransplant Patient

    thank you and yes, i didn't mind especially because UNC was eliminated. i hope you're doing well too.

    May 13, 2022
  • Saveddonna55Transplant Patient

    Stephen, I have had my pancreas transplant 14 years and now experiencing rejection. My pancreas is swollen and inflamed yet it is still functioning. Had high doses of Solumedrol at Mayo and know another biopsy is in about a month or so. Time will tell but I try to be optimistic. Otherwise doing okay.

    May 13, 2022
  • StephenCFTransplant Patient

    Oh no @Saveddonna55. I hope the treatments are favorable, and yes optimism does help. Wishing you the best.

    May 13, 2022
  • Saveddonna55Transplant Patient

    Thanks Stephen CF! I will know what the next step will be in less than a month. Patience!!!

    May 13, 2022
  • LucyTransplant Patient

    I had a very unusual wait. I was referred to VCU in May of 2021. My meld score was six but I my lab scores hgb especially very low. They saw me at VCU monthly to check my labs and symptoms. I was getting very confused and had to stop driving in June. I was put on list Oct 24 with a Meld score of 8. Symptoms getting horrible. I got the call on Jan. 19 and couldn’t believe it. Worried if there would be problem with donor liver. It was perfect. I hear these stores and cannot believe how fortunate I was.

    May 13, 2022
  • gl437ysTransplant Patient

    Good to hear. Was it a DCD donor?

    May 14, 2022
  • Saveddonna55Transplant Patient

    Lucy, I’m so happy for you! Hope things are going well.

    May 14, 2022
  • LucyTransplant Patient

    I am who is a DCD.


    things are going well. My liver is doing well, but WBC is plow know and changing meds and new lab orders


    thank you

    May 14, 2022
  • Saveddonna55Transplant Patient

    I looked up dcd donor and it means deceased donor.

    May 14, 2022
  • Sdey0522Transplant Patient

    It's wonderful to hear about so many transplants linked to Donation after Circulatory Deaths (DCD). The more it happens, more lives will end up being saved! πŸ‘

    * even Heart Transplants are happening via DCD donors πŸ™


    May 14, 2022
  • Sdey0522Transplant Patient

    @Saveddonna55 - DCD = Donation after Circulatory Death.

    May 14, 2022
  • Saveddonna55Transplant Patient

    I guess I was just making it simple. Correct is donation after circulatory death.

    May 14, 2022
  • gl437ysTransplant Patient

    So you did have a DCD donor?

    May 15, 2022
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