Liver transplant - Let's support each other

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?

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?).

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?

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

@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

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.

Thank you for your kind words! Yeah I was way over prescribed. By the end of it I could take 20 .4 Dilaudid at one time and it didn’t even touch me! I knew . They actually threw me off the transplant list because they said the pain would be to great cause they could Not give me enough pain meds to comfort me because my tolerance was so high. They alone where responsible for medicating me because I was living at the hospital on a permanent basis. They gave me Dilaudid every 4 hrs along with Atalanta and morphine every 3. The doctor called my mom and said I had lapsed into a coma and this was the end. She came immediately and found me totally awake and out of my mom. My mom caused a big scene(she is a retired RN. I wasent in any coma<they had drugged me so bad that I lost consciousness. My mom went nuts on them. They overly medicated me and if I wasent under HE,I was a zombie stoned out of my mind! They put me back on the list 2 months later
Unfortunately , I have developed an eating disorder in which my life is at stake once again. Problem is I cant eat. I’m nauseated all the time and can’t get food down because of it. It’s not like I don’t eat cause I think I’m fat. I don’t eat because I have no appetite.. I’m seeing a doctor and a psychiatrist. About 2 months now. They have done nothing!!i go every other week and not one thing is talked about of any importance. It’s a joke!
Fatigue is always been a problem for me. It takes me 2 hours in the morning just to feel like I can move. It’s ridiculous. I have no problem with sleep. I have been on Trazadone since the transplant. I go to sleep within 20 min.<don’t wake up and I can sleep 10-11 hours a day! I am still disabled so I’m home all the time.Are you still disabled from your transplant? Anyone?

Thank you for your kind words! Yeah I was way over prescribed. By the end of it I could take 20 .4 Dilaudid at one time and it didn’t even touch me! I knew . They actually threw me off the transplant list because they said the pain would be to great cause they could Not give me enough pain meds to comfort me because my tolerance was so high. They alone where responsible for medicating me because I was living at the hospital on a permanent basis. They gave me Dilaudid every 4 hrs along with Atalanta and morphine every 3. The doctor called my mom and said I had lapsed into a coma and this was the end. She came immediately and found me totally awake and out of my mom. My mom caused a big scene(she is a retired RN. I wasent in any coma<they had drugged me so bad that I lost consciousness. My mom went nuts on them. They overly medicated me and if I wasent under HE,I was a zombie stoned out of my mind! They put me back on the list 2 months later
Unfortunately , I have developed an eating disorder in which my life is at stake once again. Problem is I cant eat. I’m nauseated all the time and can’t get food down because of it. It’s not like I don’t eat cause I think I’m fat. I don’t eat because I have no appetite.. I’m seeing a doctor and a psychiatrist. About 2 months now. They have done nothing!!i go every other week and not one thing is talked about of any importance. It’s a joke!
Fatigue is always been a problem for me. It takes me 2 hours in the morning just to feel like I can move. It’s ridiculous. I have no problem with sleep. I have been on Trazadone since the transplant. I go to sleep within 20 min.<don’t wake up and I can sleep 10-11 hours a day! I am still disabled so I’m home all the time.Are you still disabled from your transplant? Anyone?

@rowdyramsey I have been on just about every narcotic (hydrocodone, oxycodone, oxycontin, Dilaudid) at some point in time for knee replacements, the liver transplant, and a couple of other painful things but never for as long as you were. I was on either oxy or hydrocodone for a few months following my first TKR but for some reason I have so far been able to discontinue narcotics without a problem. Part of that may be that I have always been very conservative in how much I took.
That's good that you, yourself, took the initiative to discontinue the drugs, that does seem like an excessive amount and I suspect almost anyone would get dependent on them if they were taking them for that long.
You must be feeling much better now, I am happy for you, and impressed that you took care of this yourself.

@racing212 It seems a lot of people complain of fatigue. I have been having a problem with that recently but I don't think it is related to my liver transplant, I am pretty sure it is related to simply not sleeping very well. Are you able to get a good night's sleep? I often wake up and am exhausted still but can't fall back to sleep. I will get up, have breakfast and then after doing a few things return to bed for a nap. I can do that because I am retired.
JK