Liver transplant - Let's support each other

Posted by lmctif @lmctif, Oct 29, 2018

What topics do people who are waiting for a liver transplant want to talk about? Who has had a liver transplant and wants to talk about?

Interested in more discussions like this? Go to the Transplants Support Group.

@gaylea1

I honestly can't recall any pain meds after surgery. Maybe within the first 48 hours but nothing after that for sure. The only pain I remember is from lying awardly in the bed trying to get comfortable and my back hurt after 8 1/2 hours during surgery.

Jump to this post

Wow,that’s just crazy to hear. So totally opposite! Just shows how each individual is so different! Every single person has their own individual experience.

REPLY
@contentandwell

@rowdyramsey I had a great recovery from transplant and never had a problem from it.
Your journey sounds very unusual. I assume you are being treated at an excellent transplant center, if so you need to believe in them. If not, then find a different one.
I'm sorry to hear you are having difficulty eating now. Hopefully the doctors you are seeing will be able to provide you with some help. Please let us know how you are doing, and if they do have any suggestions for you to get beyond your lack of appetite.
JK

Jump to this post

I was treated at the University of Maryland. That’s where our shock trauma is located. I also had the opportunity to go to John Hopkins. Most people out of state have heard of Hopkins. Have u? My post treatment was great the first 8 months maybe. Then it went to hell.I never hardly hear from them. I do have an appointment with the liver people on November 26th. Wonder if they will say or do anything about what’s happening to me. I doubt it highly. Will let u know!

REPLY
@racing212

I get tired real easy. I fall asleep at the shop once in awhile and noone says anything. They put a shunt in my liver a year ago and that stopped the fluid build up

Jump to this post

FATIGUE -
Fatigue is one of the symptoms that I experienced, even early in my diagnosis with liver disease. In the beginning, I would sometimes come home from my day as a teacher, and sink into the couch until bedtime. As my disease progressed, my fatigue became overwhelming. I retired early. The good news is that as soon as I woke up from my transplant surgery, I felt as if someone had flipped a switch to ON and the fatigue was gone.
Fatigue is one of the signs and symptoms of cirrhosis that I shared in my reply 2 days ago. (https://www.mayoclinic.org/diseases-conditions/cirrhosis/symptoms-causes/syc-20351487)

Here is the definition of fatigue:
"Nearly everyone is overtired or overworked from time to time. Such instances of temporary fatigue usually have an identifiable cause and a likely remedy.
Unrelenting exhaustion, on the other hand, lasts longer, is more profound and isn't relieved by rest. It's a nearly constant state of weariness that develops over time and reduces your energy, motivation and concentration. Fatigue at this level impacts your emotional and psychological well-being, too." https://www.mayoclinic.org/symptoms/fatigue/basics/definition/sym-20050894

@racing212, You must have a great group of co-workers! .

Who else has something to share about fatigue while waiting for a liver transplant? How did you manage your daily living?

REPLY
@rosemarya

FATIGUE -
Fatigue is one of the symptoms that I experienced, even early in my diagnosis with liver disease. In the beginning, I would sometimes come home from my day as a teacher, and sink into the couch until bedtime. As my disease progressed, my fatigue became overwhelming. I retired early. The good news is that as soon as I woke up from my transplant surgery, I felt as if someone had flipped a switch to ON and the fatigue was gone.
Fatigue is one of the signs and symptoms of cirrhosis that I shared in my reply 2 days ago. (https://www.mayoclinic.org/diseases-conditions/cirrhosis/symptoms-causes/syc-20351487)

Here is the definition of fatigue:
"Nearly everyone is overtired or overworked from time to time. Such instances of temporary fatigue usually have an identifiable cause and a likely remedy.
Unrelenting exhaustion, on the other hand, lasts longer, is more profound and isn't relieved by rest. It's a nearly constant state of weariness that develops over time and reduces your energy, motivation and concentration. Fatigue at this level impacts your emotional and psychological well-being, too." https://www.mayoclinic.org/symptoms/fatigue/basics/definition/sym-20050894

@racing212, You must have a great group of co-workers! .

Who else has something to share about fatigue while waiting for a liver transplant? How did you manage your daily living?

Jump to this post

I do. They let me take breaks when i want and sometimes i go in the bosses office and play cribbage while i rest.... I leave if i get to tired and nap at times in the lunch room

REPLY
@gaylea1

My HE episodes included confusion, lack of awareness (time, place, situation) dizziness (including falling or fainting), irritability, and fatigue. Combined they made me one hot mess lol...When I had my most severe HE episodes I also lost consciencesness. (sp?).

Jump to this post

Did you have any warning that this episode would happen? What first
happened and how did you get to the hospital?

REPLY

Regarding fatigue prior to transplant....I got to the point where I got to the kitchen to do household chores and needed a nap afterwards. I was still able to get to the grocery store but would only walk through the produce isle since walking around the entire store was a challenge due to terrible cramping.

Post liver transplant my fatigue and leg pain vanished. The other day I went for a 5 mile walk and wasn’t even tired. I still cannot believe it and am just very grateful to all the amazing doctors out there.

REPLY
@rosemarya

FATIGUE -
Fatigue is one of the symptoms that I experienced, even early in my diagnosis with liver disease. In the beginning, I would sometimes come home from my day as a teacher, and sink into the couch until bedtime. As my disease progressed, my fatigue became overwhelming. I retired early. The good news is that as soon as I woke up from my transplant surgery, I felt as if someone had flipped a switch to ON and the fatigue was gone.
Fatigue is one of the signs and symptoms of cirrhosis that I shared in my reply 2 days ago. (https://www.mayoclinic.org/diseases-conditions/cirrhosis/symptoms-causes/syc-20351487)

Here is the definition of fatigue:
"Nearly everyone is overtired or overworked from time to time. Such instances of temporary fatigue usually have an identifiable cause and a likely remedy.
Unrelenting exhaustion, on the other hand, lasts longer, is more profound and isn't relieved by rest. It's a nearly constant state of weariness that develops over time and reduces your energy, motivation and concentration. Fatigue at this level impacts your emotional and psychological well-being, too." https://www.mayoclinic.org/symptoms/fatigue/basics/definition/sym-20050894

@racing212, You must have a great group of co-workers! .

Who else has something to share about fatigue while waiting for a liver transplant? How did you manage your daily living?

Jump to this post

Good article, @rosemarya Thanks for the link. I do have fatigue pretty much always. I attribute it to inadequate sleep since I get up so many times during the night. My husband thinks it's too much exercise but I think I am more tired when I don't get exercise. I mentioned to my PCP not long ago that I was tired all the time and frequently took a nap in the afternoon. His response was "what's wrong with that?".
Prior to transplant I definitely needed naps. At one point it was so bad I would have to stop and take a break on my way up the stairs and then I discovered that was due to my hemoglobin and hematocrit counts being extremely low, and I had gotten somewhat anemic. I know I was extremely tired initially following transplant too. I think, for me anyway, that anytime my body is recuperating or fighting something off, I do get extremely tired. My recent fracture left me tired a lot.
I went to my club this morning and did about an hour and 15 minutes in the water and right now I am fighting off the desire to go upstairs and take a nap.

@rowdyramsey Johns Hopkins is right up there with Mayo and Mass General in being well known. I believe it, along with those two and Cleveland Clinic, is one of the top four hospitals in the country. Have you gone there? If you are not satisfied with your care at U Maryland I would definitely advise you to go there for a consult. Your problems are somewhat unique and as non-medical people, we really cannot advise you beyond that suggestion to get another opinion. I hope that when you have your appointment on the 26th it will be fruitful.
JK

REPLY
@contentandwell

Good article, @rosemarya Thanks for the link. I do have fatigue pretty much always. I attribute it to inadequate sleep since I get up so many times during the night. My husband thinks it's too much exercise but I think I am more tired when I don't get exercise. I mentioned to my PCP not long ago that I was tired all the time and frequently took a nap in the afternoon. His response was "what's wrong with that?".
Prior to transplant I definitely needed naps. At one point it was so bad I would have to stop and take a break on my way up the stairs and then I discovered that was due to my hemoglobin and hematocrit counts being extremely low, and I had gotten somewhat anemic. I know I was extremely tired initially following transplant too. I think, for me anyway, that anytime my body is recuperating or fighting something off, I do get extremely tired. My recent fracture left me tired a lot.
I went to my club this morning and did about an hour and 15 minutes in the water and right now I am fighting off the desire to go upstairs and take a nap.

@rowdyramsey Johns Hopkins is right up there with Mayo and Mass General in being well known. I believe it, along with those two and Cleveland Clinic, is one of the top four hospitals in the country. Have you gone there? If you are not satisfied with your care at U Maryland I would definitely advise you to go there for a consult. Your problems are somewhat unique and as non-medical people, we really cannot advise you beyond that suggestion to get another opinion. I hope that when you have your appointment on the 26th it will be fruitful.
JK

Jump to this post

I have not tried Hopkins. I didn’t know I could just switch like that. I’m post transplant of 4 and a half yrs. Can I do that? Just switch? I’d love to! Everything you say about being tired sounds normal to me. Everyday of my life I struggle with having no energy. I can’t stand even getting up to go to the bathroom. It gets that bad sometimes. Takes me hours in the morning to get ready for the day. I’m only 51 and I hate it! If I didn’t take meds to get me going in the morning,I’d never leave the house! The medicine gives me energy and wakes my body up enough to get threw the day. So,fatige I do understand. I think that’s spelled wrong.sorry!

REPLY
@rodney9999

Regarding fatigue prior to transplant....I got to the point where I got to the kitchen to do household chores and needed a nap afterwards. I was still able to get to the grocery store but would only walk through the produce isle since walking around the entire store was a challenge due to terrible cramping.

Post liver transplant my fatigue and leg pain vanished. The other day I went for a 5 mile walk and wasn’t even tired. I still cannot believe it and am just very grateful to all the amazing doctors out there.

Jump to this post

Wow, that sounds great! I’m happy for you. Keep doing what your doing!¡

REPLY
@racing212

I do. They let me take breaks when i want and sometimes i go in the bosses office and play cribbage while i rest.... I leave if i get to tired and nap at times in the lunch room

Jump to this post

Your job sounds great! Were you ever disabled during transplant? Before or after?

REPLY
Please sign in or register to post a reply.