Rosemary, I am just joining the discussion group. Did you have extreme fatigue in morning or at night and how did you feel? How debilitating was it? Did it worsen over time? Rod E. @rosemarya
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Rod, At first my fatigue was mild and sporatic.(@ 8 yrs) I just assumed that my tiredness was related to aging and hectic teaching schedule. As my psc progressed, and my labs began to show elevated numbers, I also began to feel more fatigue. Some days I would nap in afternoon, eat dinner, nap, then go to bed. And still I never felt ‘rested’. I also developed other bothersome symptoms at this point, and my GI referred me to local transplant center.
Look at the Mayo Clinic web page – diseases and conditions, for helpful information.
Feel free to contact me about any more questions you have.
Rod, I read in your post that you are having tests this weekend. Best wishes to you. I know how scarey it can be.
Chills, fever, abdominal pain – yes, I did have those, too.
I transplanted at Mayo (being transferred from Kentucky for medical complications). Their treatment and care are excellent. Are you at Mayo?
As far as insurance – someone at the transplant center should be able to answer your concerns about the cost to you.
When I was diagnosed, at first, I had no fatigue or symptoms other than elevated liver enzymes. I noticed some unusual tiredness now and then, as the day went on and my doc told me that that was part of having a liver disease, so I tried treating myself to afternoon naps. Later, on some days I would want to just remain on the couch and be lazy. As time went on the fatigue become more of an everyday event. Naps didn’t really help to refresh me at all. And if I was out somewhere like grocery shopping, it would sometimes hit me all of a sudden – kind of like my battery lost its power.
So mine was pretty much – a hit anytime sort of thing. There was no pattern or way to predict how my day would evolve.
Yes, it did get worse.
By the time that my liver disease began to progress toward cirrhosis, my fatigue became extreme or overwhelming. I wanted to sleep all the time, no longer drove my car. And the only time I left the house was to go to doctor visits at my transplant clinic (I was now on the transplant waiting list.) Here is how I would describe it…..”It was as if the air around me had turned into a thick heavy substance, and any movement became difficult…Imagine trying to move if the air is thick and heavy like molasses.” Even thinking became harder for me. I spent my days on the couch in our living room…I do not know if this is what happened to others or not.
Hang in there. Surround yourself with people to support you…and…Don’t hesitate to ask others for help.
Hi Rosemary. I want to use your previous post as a spring-board for my comments. In July, 2022 routine lab reports showed elevated liver enzyme levels (AST, ALK), and an elevated ferritin (iron) level. At that time I felt more tired than usual, had pain in my epigastric region, experienced shortness of breath on exertion, and had diarrhea. An informal diagnosis of fatty liver disease was considered. I requested an abdominal ultrasound which showed nodular, fatty infiltration of the liver, but my PCP did not confirm it was liver disease. A gastroenterologist I contacted confirmed the elevated liver enzymes, and ordered additional lab work. I decided to wait until I transitioned to Tucson, AZ for the winter before continuing additional tests. The gastroenterologist in Tucson confirmed the diagnosis of liver disease, although I still did not have additional symptoms. I plan to seek a second opinion from another gastroenterologist in Tucson, but I have questions to ask here. What should I expect symptom-wise if I continue to downgrade from my current level of liver disease and need a transplant? Rosemary said she was very tired. Are there markers for changes in the lab reports such as filtration rates used for kidney disease patients, such as albumin levels? How effective are lifestyle changes (diet and exercise) in reducing the liver cirrhosis? Perhaps slowed but not reversed? In the meantime, more lab work, immunizations, and endoscopy. And, Pantoprazole for GERD. Any comments or suggestions?
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