Liver transplant - Let's support each other

@darring1 the ways in which I was sick waiting for my transplant at first included hepatic encephalopathy. This doesn’t happen to everyone. When this occurred to me I would become confused and belligerent which is the opposite of my normal self. I’d wake up this way and family would call 911 and I’d be admitted to the hospital for several days. After a while it stopped but looking back I had some low level confusion with trouble concentrating. I also had recurrent fevers of unknown origin which landed me in the hospital a few times when fevers were high and persistent. They could never find an infection source- a hematologist thought it was some internal process of hematolozation. Something like that. I was often very tired, I was very jaundiced, and often EXTREMELY itchy which is common. I also had very shaky hands from end stage liver disease. I had good days and bad days- I did get breaks from the worst symptoms and sometimes tons of energy. Didn’t develop ascities as many do but I had edema all over my body (anascara) and my legs and feet were horribly swollen. I took a lot of medications that contributed to symptoms- the worst one being lactulose which helps keep ammonia low (when it’s high it caused hepatic encephalopathy)- it does this by making you empty your bowels significantly- because of my episodes I was given a high dose which led to at least 5-6 bowel movements each day. Gross and inconvenient. I was not able to drive and I didn’t work for months. (I am a social worker). About a month before my transplant I had a consult with a nephrologist who told me that post transplant I wouldn’t be yellow or puffy or sick and I absolutely didn’t believe him. I couldn’t remember normal.

Hi katebw, I can totally relate I had HE the worse part of my liver disease for sure too. I too had to take lactalose. Yuk but I am happy to say I had my LTP 2years ago, not going to lie I have had some ups downs but doing well😊💚 I hope u r doing well

Hi Katebw,
1 yr. after my TP I had to have abdominal wall reconstruction due to several upper hernias which was quite painful but in the end worth it. Had acute liver rejection end of 2022 which made me feel sick, had to be put on steroids “yuk” and had to up my immuno meds. felt like TP all over again. but doing better. End of 2022 I fell dislocated /shattered my shoulder and broke my arm well that sent my body into a tail spin and got really sick for almost 3weeks.
My best days when I was feeling really good was exercising, working in my yard, my 🌸 flowers 🌺 and loving on my rescue pup. Most of all loving each and every moment of life. The greatest gift was my donor family and a second chance at life😊💚🌼 I will never take life for granted. I hope u r living your best life to.

Hello Everyone,

I guess I am in the beginning stages of awaiting a liver transplant. I just have to do some blood work and to see where I go from there. If anyone can help me with some questions that would be greatly appreciated:
I know - I will have to wait a long time to get a transplant but how do you avoid the anxiousness of the situation?
If one is available - how much time do you have to get to the hospital? a couple of hours, days...
And, my doctors office said that I should consider showing proof of some sort of alcohol relapse prevention program. Has anyone shown proof by giving the documents via a USB/Jump drive or email the docs? I'm looking into programs to not bother others alcohol treatment - I had alcohol in my system when I went to the hospital for a GI issue and it turned out I had cirrhosis as well. I'm sure throughout my life alcohol played a part in my situation but I'm one who really doesn't need to drink.

Anyway, I wish well to all. I've found a new appreciation for life and it's mainly because of the better angels of others that got me to, through and out of the hospital alive.

@myfablife oh the hard parts! I’m sorry you’ve had these struggles and am glad for your good times too. I relate to being appreciative of life, I feel that too (15 ish months post liver transplant). I’ve made a strong point to be with my friends and family more than ever and I’ve visited far afield friends whom I’d not seen since pre Covid. I have so far had a smooth ride with only one hospitalization (stomach flu and dehydration) in May. I sometimes have low days/weeks where my stomach is upset, or I feel tired. I have to remind myself to slow down. I often complain when this happens and dismiss my gratitude. And then return to it. Pre-transplant I had a large hematoma in my hip- not from a fall just my body out of whack. And then I had a terrible fall due to hepatic encephalopathy resulting in a compression fracture of my lower spine. As a result I have significant back pain and some leg/feet numbness. But it’s manageable and improving. I am most grateful that my mom, now 86, did not lose a child of hers, and now as she’s struggling more, I am here and very able to support her. Same with my 22 year old daughter who lost her dad at age 8 and did not have to lose her mom as she’s entering young adulthood. I cling to these things if ever I’m bothered by symptoms, but I reserve the right to complain nonetheless!

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.

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