Liver transplant - Let's support each other

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.

@maw90455
These symptoms are related to liver disease and advancing cirrhosis. Symptoms can come on gradually over time, or suddenly. Since you have felt an increase in symptoms in the last several weeks , I think you should contact your doctor about it. He might need to see you or do some labs to determine if your condition is worsening at a faster pace.
My symptoms and MELD were at a stable level , then suddenly dropped. That is when I was referred to the Transplant Center.
MAW- Does your doctor know about the increasing symptoms?

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.)

@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?

@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?

@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. 🤍

@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?

A number of people have commented on getting sicker over time as they waited on the list. Anyone willing to share what they got sicker with.