Liver transplant - Let's support each other

@maw90455, I'll be thinking of you on Monday when you have your appointment. i hope that you get some of your questions answered - Don't be shy about asking your questions while you are there!

I spent nearly 8 years with only tiredness and nausea while my liver disease progressed to cirrhosis. When I was sent to the liver transplant clinic in Kentucky, I was yellowish with jaundice, had itchy skin, nausea, and the tiredness became fatigue. My blood pressure was stead and not fluctuating, but was carefully monitored.
Gotta go - Laptop battery is about to go dead. See you tomorrow. 🤍

There has been no improvement. He continues with his therapy sessions but today he didn’t have occupational therapy. His blood pressure was low & hardly opened his eyes. He did a little physical therapy in a chair & in bed. Tomorrow we meet with his Transplant Surgeon & cardiology. He had his transplant 2 months ago.

@rosemarya Hello, and thank you for the information. I live in Chandler, AZ which is right by Phoenix. But everything is spread out here so... the nearest transplant centers without traffic are about 40 minutes away. I am 41 years old and not sure if there is any other info you'd like to know - feel free to ask. I have a Hepatologist and they said that a transplant is the most likely course for me due to my cirrhosis. I am not a patient of a transplant center, we are in the evaluation stage I believe and doubt I'm on the list. So far they confirmed the hospital assessment that I have cirrhosis and have done a scan. I go in tomorrow for an ultrasound and bloodwork. My hepatologist scheduled an appointment for me in May. I guess in May I find out if the next step is going through the tests needed by the transplant center or Viola... they apologize for the mistake and everything is A-Okay, lol.

@jlvr - Welcome! I'm happy that you are joining the conversation. You have mentioned that your husband's hands shake and that you question whether that is affecting his ability to eat. I am not a medical person, just a patient like he is. At only 2 months post transplant surgery he is going to be on high doses of medications which are necessary for his new organs, but they are strong and can have some advsere effects on some people.(like trembling hands)

Since he has been moved to a rehabilitation hospital I do hope thet he is getting the nutrition via the feeding tube. I was 'threatened' with a feeding tube if I didn't eat. It was only sheer willpower and the access to nutritional shakes that I avoided it. Perhaps that might be a possibility when he is released.

It has been a couple of days since you posted. Has there been any improvement?

Thank you- I am seeing him next Monday afternoon-did you also have blood pressure fluctuations and issues?

@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?

@katebw Thank you for your response - it was really helpful. Sorry to hear about your situation and I am happy you have came out of it better. I am feeling quite well now as in I am still able to live a normal life. Fortunately, I have a lot of support. I take some tests on Wednesday and I should know more by then. My Doctor didn't go into detail about the transplant list. So... when I left the office I just thought they put me on it and they said alcohol relapse prevention could help when it comes time to make a decision about who receives the transplant. So... are you on the list only if a team says you are? Or, if your doctor says they've put you on it? My challenges are waiting which is a good thing considering. If what I needed came by other means I feel the wait - which could take years - would be less palatable. Other challenges are basically having to go to all these different doctors you mentioned. I guess my only other challenge is proving that drinking will not be an issue. Lol, the only real issue I have with drinking, is now to prove to others I don't have a drinking issue. On another note - I've increased my healthier eating and a challenge is craving donuts, tacos, enchiladas and cheeseburgers. I kind of now get jealous of watching people eat pizza in movies and TV.

@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/

I need some guidance. My husband had a liver transplant in December. He was finally moved to a Rehabilitation hospital last week. He still has a feeding tube, but doesn’t eat, he will take a couple bites of his meal and he is done. He is 6 ft 2”. His lowest weight got to 149 lbs, he was weighed a couple of weeks later he was 170 lbs, last week when he was admitted to the Rehabilitation hospital he weighed 151 lbs. I think part of his problem is that his hands shake & he can’t feed himself. The hand shaking started after he was diagnosed with advanced cirrhosis of the liver in the Spring of 2022. (In 2020 he was diagnosed with NASH, the liver disease advanced in 2021 after a hip surgery & while doing outpatient physical therapy.)

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.