Liver transplant - Let's support each other

Actually all of the above. He is married but his wife works 5 12 hours shifts at a hospital. All he is doing now is sleeping all the time. He says he is to tired to talk and doesn't want me to mention his illness to anyone outside of our family. A little history for you: He has been going to doctors for over 3 years trying to find out what was wrong with him. He started out not being able to eat without getting sick and feeling bad. But he continued his life working and not looking like anything was wrong with him. Approximately 3-4 months ago he got Covid and then it turned into pneumonia. That put him into a downward curve. He went to the VA and they ran test and found out the problem. He is not doing well and my daughter is a RN and wants to get him somewhere that will work faster than the VA. I feel like my hands are tied and I do not know what to do. Can you give me some advice please?

Good afternoon- I emailed my MD this AM regarding my itching, lack of appetite and lack of sleeping, nausea, ad irregular blood pressure results for the past 2 weeks and waiting for a response.

Bless your heart. Well I hope u get a response soon and it is helpful to u. Liver disease is a sneaky disease u feel fine than all of a sudden u r very sick. I hope u do not have it and they figure out why u r having these symptoms.
Take care😊💚

@scooterbill, Advice - I have none, but here are some thoughts.
My first is a question: Is his doctor following his health situation, or has he shared what is going on? Since he if feeling so poorly, he might need someone to contact the doctor. A doctor can only act of he/she knows what is happening. Your son's current nausea. not eating, sleeping, and general downward curve are indications that his doctor should be kept informed.

Does your son have insurance that would cover him in a non VA setting? If he does, that could be a resource to tap into. There should be a patient rep or ombudsman at the his VA, Has his wife spoken to them for resources?

Scooterbill, Your son needs nutrition. When I had nausea my GI suggested tat I try Ensure or similar nutritional drink. Yes, I had a gag response, but drinking it cold with a scoop of ice cream helped me to get it down.

Yes to everything. He has full insurance with the VA and is going thru the testing process now. Thank you I will share the information about the Ensure and ice cream.

Hello everyone, my husband and I are starting our journey of possible liver transplant. We are starting all the testing on Valentines Day in Jacksonville. Excited to be staring so quickly as we only found out of his condition Nov 1st. I’m reaching out because we of course don't know what to expect and we want to be as prepared on the home and health front as our Doctors will be on the medical front. My husband is healthily as far as he is active and still works out on a regular basis, tires easily and naps a couple times a day, I’m told that’s to be expected. So as far as how I can help will be more on the nutrition and support side of things. Is there a blog for healthy cooking? What foods are easily absorbed vs ones we should stay away from as far as liver health. Being new to this I/we would like any help and guidance any of you can assist with. Thank you all in advance.

Hi, @jeanannd. I want to welcome you to Connect and to say that I am happy to meet you here in this liver transplant support group. I would like to start by wishing you and your husband a very Happy Valentines Day! You do have a unique way to celebrate the day and to hopefully begin your journey to a successful transplant. 🤍
I transplanted at Mayo Rochester in 2009. My pre transplant period/before listing lasted almost 8 years while my disease Primary Sclerosing Cholangitis (PSC) slowly destroyed my liver. I remember very early when I was diagnosed, my local GI told me to - eat a healthy diet, - stay active, - to avoid alcohol and over-the-counter meds. That is pretty much the same advice I received when I was listed and waiting for my transplant.
Over the course of time and interaction with doctors, nurses, dieticians, I learned that I really didn't have to begin a new eating routine because I learned to adjust our favorite menus to lower salt, fat, sugar, red meat, etc. Think of a heart healthy diet. Unless there is a specific food or allergy for your husband, you will likely be able to be as creative as you want to be! One thing that I will mention is that over time, your husband's food choices can change and something that tasted good yesterday, will cause nausea today.

Here is a link to Healthy Lifestyle from Mayo Clinic.
- Nutrition and healthy eating
https://www.mayoclinic.org/healthy-lifestyle/nutrition-and-healthy-eating/basics/nutrition-basics/hlv-20049477

When I was at Mayo during my treatment, I saw and purchased the "Mayo Clinic Book" because it is a great guide for healthy eating and healthy living. I recommend it because of the encouragement and healthy tips.

Has your husband received his appointment schedule? Please let me know how I can assist you along the way.

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.

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 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/