Did you have any warning that this episode would happen? What first
happened and how did you get to the hospital?
Member has chosen to not make this information public.
Yes…Im the titrating queen! Ive got this down to a science after 3 yrs. 1
huge gulp at bedtime…kind of like the candy on the pillow in hotels..lol.
If I miss it I pay because I feel miserable and dopey. Then you have to
take it until you get results. No diarrhea cramps thank God. Its the
Rifaxim that keeps me mentally sound I think. That stuff is gold! And just
as expensive! Most folks are getting help with the expense I think. If
not..speak up there is help.
Someone recently was talking about this group and what a help it is. So
true! I have learned so much…would like to see my caregivers get more
involved though. They have no clue what you all are going through. Im in
this for 3 years EDLD 4 with a Meld of only 7. Not sure Im lucky as Im
going to be 70 this year and will likely need transplant after that. So far
so good though. I can still drive myself and am still able to care for my
house and an 84 yr old friend who is in really good shape.
Caregivers…daughter will have to cope as needed.
God only knows how the cards will fall. Im waiting for a winning hand!
Im on lactalose and rifaximin…I have mild HE. Will the meds keep me from
a full blown episode. At least I know what it is and its all on my records.
The big worry is that the local hospital may not know how to treat it!. I
have instructed my friends and family to get me to the transplant center
ASAP. Tampa told me they will come get me in a helicopter….
Probably have a heart attack if that went down..lol.
Yes depending on the day or week…I still have itch, nausea, and the never ending fatigue. My life is much more limited. I was looking forward to the trip to Mayo but it took me 3 days to recover. Most of my days I struggle to get to PT for my shoulder and foot….The fall this summer changed everything even though unrelated to the liver. LOL…somehow the liver rules! Im making great progress with my PT and am looking forward to getting back to 99.9%.
@jk volunteer mentor
Found it on bloodwork at my Medicare 65 check up. Further tests and a biopsy confirmed Stage 4 Cirrhosis. I have a lot of connections to causes but now they say it was likely due to NAFLD and progressed to cirrhosis. Im a carrier for hemochromatosis and recent tests indicate auto immune hep. I am very gradually deteriorating. I have mild HE and varicies. No ascites thank God. Going on 4 years now and have tons of symptoms but nothing like what I hear about. Mayo evaluated me and said I was too early so they watch me. I go for tests and blood every 6 mo. and my local Drs. send them reports. Not sure why the Meld score is so low but Im not nearly as sick as most of you. Im very pro active and enjoy learning all about the amazing human body! Very lucky too!