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Liver transplant - Let's support each other
Transplants | Last Active: Jun 22 9:17am | Replies (1606)Comment receiving replies
Hello Again, I just wanted to add to my comment because I am still in the dark about much. But I found out my MELD is 12... so... I'm guessing I will not be needing a transplant terribly soon. I don't know how to go about everything now - the news I feel is good but on the other hand, it delays the inevitable. Is there any advice from anyone about going through this time? Should I coordinate with a GP to have test done before the time I meet with a transplant committee? What about idle hands? Right now, I have work, I built a website to go over my diet and exercise creation to make it easier for those in a similar situation, I attend meetings similar to AA that seem to focus more on making other improvements in my thought process to eliminate alcohol. It seems like the weirdest waiting game of my life.
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Hi klm3. In January 2022 I was put on transplant list as inactive but level 6 MELD score because I had to go through 36 rounds of chemo and radiation for my bile duct cancer which was blocking both ducts just before the intestines. I had 3 ERCPs (Nov, Dec, Jan) to place stents for the bile to flow and to gather cell samples. Before radiation I was told probably September or October for transplant if all goes well.
I had to wait 1 month for a laporotomy in March to be sure the cancer hadn't spread to any neighboring nodes. At this point I was expecting a transplant in a few months June or July.
The Friday night April 17th I got a call that my MELD score was 26 and to expect a transplant soon. Of course I thought that meant in a few weeks.
Sunday April 19th I got a call from the Donor Procurement Team that a brain dead patient was a match and that Monday the 20th the family was taking the loved one off life support.
That Monday at 5 p.m. (72 hours after learning I was a MELD 26) I was told to get to Mayo by 6 p.m. Fortunately I had been renting an apartment just down the street since January for easy access to Mayo. Tuesday April 21 at 2:20 a.m. my cousin in Nogales AZ (primary caregiver) got a text from the surgeon "Old liver out. New liver in."
No one can predict when a match will be available. I was fortunate. I saw pictures of my old liver and still can't imagine how I survived.
I will say the sudden turn around caught my 2 caregivers off guard for we were expecting a later in the year transplant. One caregiver was in Italy and the other had to cancel a trip, regroup for a few days before she came up to Phoenix. Fortunately my friends in Tucson rushed up to the apartment, fetched my dogs and their gear and returned to my home in Tucson where another friend house and pet sat for the 6 weeks post surgery period.
When you become a transplant candidate you give up all control for planning so now is the time to set up flexible contingency plans for what needs to be done in the future. E.g. I revised my will; found someone to love and take my dogs in case I died; notified the vet of this possible change; and notified others that would need time to prepare in case I died.
I guess I am saying expect the unexpected. Transplants are miracles and miracles do happen.
Hope this helps, Barbara