@klm3 I'm so glad you wrote here. I had a liver transplant in late 2021 so it's been about 15 months for me. It was a short time from when I was diagnosed with end stage liver disease (March 2021) until I had a transplant (Oct 29, 2021) so looking back I didn't have long to wait but at the time the days and months crawled by and I was often very anxious.

While my disease was not alcohol related, alcohol use was questioned for one main reason and one small reason: I found out how sick I was when I got confused coming home from a work errand and hit a stone wall in my neighbor's driveway. They called 911 and police assumed I was drunk as I was all of a sudden jaundiced and confused. I had NOT been drinking and was not much of a drinker, however I had for about 3 weeks the month before had nightly cocktails with a neighbor during the height of the pandemic. So that fact and my driving issue got all tangled together and it took a while to convince my eventual transplant team that I didn't have an alcohol use disorder. They insisted on 6 month sobriety before even talking to me, though it ended up being more like 4 months given the circumstances. If there is a question about alcohol or other drugs playing a role, most transplant centers want to understand this and know that if you need to you are addressing substance use issues. After a transplant, one should have no alcohol as it interferes with post transplant medications and can increase the chances of organ rejection. The point is to have a "kind" environment in which your new organ can thrive so it's understandable that this needs to be addressed.

So a lot of my anxiety was during that time period, and also the wait to get on the transplant list before and after I met with my team -- once I was accepted I still needed to go through all of the tests and appointments (mammogram, Pap smear, dermatology, dentist, nuclear stress testing, nephrology, psychiatric clearance, etc) I only had to wait about a month until I got The Call.

I found that the anxiety of waiting was relieved by getting outside for a "walk" or as I would say as my gait was problematic "a hobble." I ended up living with my 80+ year old mother for several months and she is VERY into routine so her routines as maddening as they were to me as a child, helped me as a sick person. We ate healthy meals, did our exercises, read the paper, tidied up after ourselves, kept up with chores, etc. Routine when the days and worries blend together was key to me. I also needed to be with people - visits from friends, time with my boyfriend, etc. I watched shows, listened to podcasts and read a lot. Anything to get me out of my head in meaningful ways.

I had been told by my transplant team coordinator, that once you got The Call, you had time to get yourself together, get your ride on board, pack, etc. Like several hours. This was NOT the case at all, and I'm kind of glad. I was called at 6 pm on a Thurs and was told to be at the hospital - a good two hours away from my home - in less than 3 hours so I had to do a quick packing (of way too many clothes) as did my mom and sister, and we drove in haste to the hospital so I could be there overnight. My transplant was at 6 am the next morning. It was a whirlwind. My memory is of sitting in the backseat of my sister's car, texting my boyfriend and daughter with shaking hands while my sister and mom argued over directions in the front seat. I have never been as terrified and hopeful all at once.

When I was at my most ill -- and I got very sick along with way -- I never could have imagined that I'd ever feel so well and happy again, but I do. It's taken a lot of work, and will always take work (exercising, eating well, avoiding crowds, washing your hands like a champ, being devoted to medications, dr appointments, lab work, etc etc. It's worth it.

How are you feeling now? Do you have support? Are you on a transplant list or are you in process? What are your big challenges/

@klm3, Welcome to the liver transplant group! I am happy to have you join in the conversation. I will not deny the fact that we who are waiting for an organ transplant have had to learn that it can be a long journey that is filled with anxiety, frustration and decreasing health...but we, all of us, are here to share our experiences and to walk with you and offer our support along way.

In my opinion and experience, the secret to getting through the long wait is to focus on one day at a time. Find something to be thankful for each day. And work with your medical team because they are the experts who know what is best for you. Be aware that well meaning friends and relatives who think they know more than the doctors.

When I lived in Kentucky, I was given 45 minutes to get to the hospital because that is how far we lived from the transplanr center. Later, when I was at Mayo Rochester, I was a few blocks away and was told to come in right away. I think that your transplant team will work with you to make a plan.

As for alcohol, you are correct that it is a factor in being eligible for a transplant. You will be providing your medical records, and be advised accordingly. Alcohol consumption is one of the screenong questions. Avoidance is essential, and in some instances there is a need for proof.

Kim - Would you share a bit about yourself if you are comfortable? Are you already a patient at a liver transplant center? Have you been scheduled for a transplant ecaluation yet? or Are you already on the active transplant list?

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.