Liver transplant - Let's support each other

After reading your story
And @myfablife.
I don't think I will complain again..2 years for my transplant..had my issues and surgery for hernia repair just 6
Mos after transplant surgery. Recovery was tough.but I guess I am tougher than I thought
Good luck to both of u and God bless.

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 Katebw, Yes u absolutely have the right u have been thru a lot. I am so Happy u have your 86y/o mom and your young daughter to enjoy your new life with that is wonderful.
I lost my Dad at 83, it was devastating he was with me every step of my TP journey and when I went thru HE. the best caregiver u could have he passed one month b/f my 1yr LTP.
Enjoy your family/ friends I am so glad u r doing so well after 15moths.
LTP. Keep up the good health!!😊💚

@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!

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.

@myfablife thank you for responding. While I don’t wish HE or lactulose on anybody, it’s helpful not to feel so alone. Congratulations on your transplant 2 years ago! What kinds of struggles have you had, and what are your best days like?

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

The Rehabilitation Facility is less that 10 minutes away. John has his 2 month follow up appt with Transplant Coordinator and a surgeon yesterday. Doctor is pleased with his heart, lungs, kidneys and liver functions. His only concern is John not eating. He explained to John that it is up to him to eat. John is currently getting his nutrition from the feeding tube hooked up for 18 hrs a day. The doctor would like to see John reduce the time to 12 Hrs and finally off the tube. The doctor says its up to John to eat, maybe start with soft foods, and since John's hands are tremoring, I should help him eat until he is strong enough to feed himself. He has to eat.
John was very alert during his appointments and today he was very active with his occupational and physical therapy sessions. I was there for training to be able to help John when he gets home.

Maw, how did your appointment go on Monday.

My doctor told me early on, yes you are sick and it sounds crazy, but you're not sick enough for transplant yet. My meld score was in the upper teens. I then had verifies bleed in my esophagus that had to be tied because of limited flow through my liver due to cirrhosis. Them my portal vein started leaking into my body cavity. At first having a perisenthesis (body cavity pumped out) every few months. That got worse as the months went by. In the mean time my liver was taking out my kidneys. My meld score climbed into the low to mid 20's. For the last 2 1/2 before transplant I was being pumped Monday and Friday averaging 12+- liters of fluid per week. On Tuesday, Thursday and Saturday I was on dialysis. My meld score climbed to 25. One of the last tests before transplant was a heart catherization. Thr doctor told me the contrast needed was hard on kidneys. I told him go ahead, I'm going to die anyway. 2 days later my kidneys shut down. What sounds terrible turned into a blessing in disguise. My meld score shot up to 29. 7 weeks later I received a joint liver and kidney transplant. 13 1/2 hours under the knife 10 units of blood later hear I am.
Good luck to you on your new voyage ahead!