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
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.