Liver transplant - Let's support each other

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.

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@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

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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

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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?

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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?).

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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?

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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

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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.

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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

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