Been there done that .........

[Guest guest]

i LeighAnn,<br><br>I started with Amgen's

infergen. My doctor want's to see me go to the cocktail

when I feel ready. I am NOT ready ..... not sure I

ever will be. He understands and is fine with that

descision. <br><br>Went to group tonight .... it was good to

be back ... very nice and supportive folk. The

doctor who chairs the meetings is awsome and very

outspoken ... he's great to have as a sounding board (a

leader in the field of liver disease). The group,

sponsored by the American Liver Foundation (ALF), is made

up of pre (on the waiting list) and post transplant

patients, newly diagnosed liver disease patients and old

timers. It's not just HCV+ patients but we are the

overwhelming majority.<br><br>Tonight was a good open

discussion, all were able to participate (about 25 people in

all). The big issues were itching and muscle cramps.

Funny to have all those people telling my story ....

.<br><br>My " numbers " were predictable and I'm leaving that

to my doctor .... I've decided not to get too hung

up on the lab results because of thier fluxuating

values (over all, as research has indicated) and my

liver seems to be hovering at the present time.

<br><br>I have not seen or heard of the results you noted

..... I am still hearing that interferon is only

working in 7 - 10 % of those in treatment and that the

relapse rate cuts into those numbers as well .... as it

is there is no general treatment that has shown any

great or moderate signs of success.<br><br>It seems

that my energies will be best spent in working with

politicos and the goverment to increase awareness and to

" free " up livers for those on the list. Unless research

improves all who have reached fibrosis status will end up

on " the " list sooner ...than later. So we need to

educate those who can help provide livers for those of us

who need them AND who will need them ..... a one or

two year wait (which is the norm) can be

fatal.<br><br>Arizona is trying to pass legislation to keep thier

livers in Arizona ... now that the age of liver doners

has gone up to 80 they seem to have a bunch of livers

..... other states are trying to pass similar laws

.....<br><br>Some of that or ...all of that you may already know

...... HCV+ is still a death sentence be it now or in

twenty years (normal incubation period)so it behooves us

to get loud and active with local, state, and

federal institutions be it the Goverment the AMA,

Insurance providers, or local resourses to insure awarness

and education for prevention and organ donations.

<br><br>It's our lives that lay in the balance ..... funny

place to be ..... who knew ....<br><br>In

Sprit,<br><br>Mitch