Liver transplant - Let's support each other

@darring1 the ways in which I was sick waiting for my transplant at first included hepatic encephalopathy. This doesn’t happen to everyone. When this occurred to me I would become confused and belligerent which is the opposite of my normal self. I’d wake up this way and family would call 911 and I’d be admitted to the hospital for several days. After a while it stopped but looking back I had some low level confusion with trouble concentrating. I also had recurrent fevers of unknown origin which landed me in the hospital a few times when fevers were high and persistent. They could never find an infection source- a hematologist thought it was some internal process of hematolozation. Something like that. I was often very tired, I was very jaundiced, and often EXTREMELY itchy which is common. I also had very shaky hands from end stage liver disease. I had good days and bad days- I did get breaks from the worst symptoms and sometimes tons of energy. Didn’t develop ascities as many do but I had edema all over my body (anascara) and my legs and feet were horribly swollen. I took a lot of medications that contributed to symptoms- the worst one being lactulose which helps keep ammonia low (when it’s high it caused hepatic encephalopathy)- it does this by making you empty your bowels significantly- because of my episodes I was given a high dose which led to at least 5-6 bowel movements each day. Gross and inconvenient. I was not able to drive and I didn’t work for months. (I am a social worker). About a month before my transplant I had a consult with a nephrologist who told me that post transplant I wouldn’t be yellow or puffy or sick and I absolutely didn’t believe him. I couldn’t remember normal.

@darring1, Good morning and Welcome!
I expect that others will want to join this conversation, in the meantime I have caught myself using the terms like, 'getting sicker' and 'ill' to indicate the increasing side effects/symptoms that accompany liver failure and cirrhosis. Maybe someone will share a better term.

To my understanding, there are symptoms of liver disease that are common for all liver diseases. Perhaps you have heard of some like: tiredness and fatigue, nausea, ascites (accumulation of fluid in abdomen), unintended weight loss or difficulty gaining weight, fevers, portal hypertension...

Some patients have few while others have enough to become hospitalized prior to transplant. I have been told that everyone responds differently, and if you have a several patients with the same diagnoses liver disease, each one will have a different combination of symptoms.

I want to encourage you to scroll back to Feb 1, where you can meet and read what @katebw, @katebw, @maw90455, and others have/are currently experiencing. And you can easily ask a question to anyone by replying - or by using their @name in your comment.

@darring1 - What brings you to this conversation -Are you a patient or a caregiver? How can I be of help to you?

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.

All I can say is thank you

@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?