Help, please -- Hep-C feedback 
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 Help, please -- Hep-C feedback

Hi all:

I say "feedback" -- what I really want to do is scream until my voice is


 Some of you may be familiar with parts of my story; in any case, I will

keep this as short as I possibly can.

I have always been as healthy as a horse -- I rarely even get a cold,
and if I did, it was only mild and lasted for a couple of days, even
though I smoke like a chimney.  In 1992 I spent some time in the
hospital due to pyelo and kidney stones.  At that time I was discovered
to have "low" platelets; after workup with heme-onc it was DX'd as
idiopathic TCP.  After that, nothing changed; I still never got sick.
Ruptured a couple of discs in '93 or so; literally had to crawl for the
first two weeks but without insurance, had to depend on the local ER and

when they finally got tired of seeing me, I was on my own; took about
six months to actually be able to stand/walk/drive for over a half
hour.  Anyway, when I fnally was x-rayed, the docs said they couldn't
understand how I could move as well as I do.

Anyway, left with spinal stenosis; started out with 15-20 Vicodin/month
but took incredible amounts of ib -- as much as 3200 mg/day -- every day

for months.  Still I was NEVER sick except my back kept degenerating
such that I am currently taking two 30 mg MS-Contin/day with Roxanol 1-3

mL for breakthrough pain.  I try to get by with 2 mL Roxanol in order to

get out of bed, and only one Contin/day.

Still, that's been my only problem.  Then about two years ago, on
routine {*filter*} work, turned out my potassium was 2.2 and I had to take
{*filter*}Kcl.  This was "worked up" with no results; then my other labs
started screwing up.  Over the next 18 months or so, I was told, among
other things, that I had pituitary tumor, adrenal tumors, Hashimoto's,
lupus; finally I was told "We don't know what's wrong with you; we'll
just keep an eye on your labs and maybe something definitive will turn

In October I went to ER because of flank pain and was DX'd with UTI.
The next morning I woke up totally incontinent; my SO took me to ER
again where they kept me for about 12 hrs pumping me full of Cipro and
fluids, then sent me home.  The third morning I woke up even worse with
altered level of consciousness, temp of 105+ and basically comatose.
Finally the *resident* decided to check my LFTs and we knew what had
been wrong with me for all those months -- Hep-C.

I spent a week or so in the hospital; I remember nothing of the first
three days, and very little of the rest of my stay.  When I got home I
discovered that, after working as a medical transcriptionist and typing
80-100 wpm for over 25 years, that I had literally forgotten how to
type.  I was terrified.  My brain didn't work at ALL anymore.  My SO
caught me one day with a lighter in  my mouth, trying to "light" it with

another lighter.

Over the past few months, I have gotten much better; I take four
tablespoons of Lactulose/day; this is supposed to give me three soft BMs

a day, but usually I have two small, {*filter*}es and sometimes none for
two days.  Since October I have lost 60 lb (but started out at 235 so am

certainly not cachectic) and after my brain fog cleared up, I felt
literally better than I had for years; even though I never got sick,
there was always some "feeling" that something wasn't right.  I was
feeling great until the last few days -- but I don't believe that what's

currently going on is related to my hep.

Right now I am totally terrified.  Suddenly I seem to have lost all the
optimism that I've had about beating this damn dragon.  I can't
understand how I could've carried this thing around for **30** years
(the consensus is to trace it back to a 2-month period of IVDA at 17;
I'm now 47.  How could it suddenly have hit like that?  Was it the
sepsis that finallly kicked it up, or vice versa?  And what happens if I

get sick (my SO has had the WORST case of the flu; he's had it for at
least two weeks and luckily I haven't gotten it.)  But if I get sick,
will it kick up again?  Will I lose my memory again and have to start
all over?  (And oh, no, what I've regained didn't just "come back" -- I
worked on it harder than I've ever worked on anything in my life.)

Now, I was ruled out for chemo from the beginning -- my  platelets are
too low (57K on last check); and I understand that interferon plays
havoc with them, anyway.  I had an EGD looking for varices  which were
clear; (I've never really been much of a drinker, anyway) but I did have

a humongous duodenal ulcer which was gone after a month of Prilosec,
although he's kept me on half-dose anyway.  *I* never felt anything
going on in my gut; is that unusual?  Interesting to me, anyway.

So, I am scheduled in a couple of weeks for my Tx Board evaluation.  I
felt at first that things were moving too slow (although I understand
things have gone much faster for me than for most); now I feel the
opposite.  I'm not ready to be evaluated.  What if I'm denied a place on

the list?  Why WOULD I be denied a spot?  What kind of questions are
they going to ask me?  What might they be looking for in my
attitude/state of mind?  Who else are they going to want to talk to?  My

SO is a big bear-looking hippie; he looks kind of scary but he's the
wimpiest  and the sweetest man in the world.  If it wasn't for him, I
can definitely say I would probably be dead right now.  He has long hair

(although none on the top -- I call it his "Gallagher hairstyle"...He's
got a full beard.  He's muscular under his padding; around 300 lb.  But
a very tender man.  HIS doc (who is from a different hospital; plus,
he's only a GP and has no connection with any liver program anywhere.
He's supposed to be one of the BEST docs in this particular clinic, but
I wonder about that, as my SO is also positive and when he asked for a
consult with a hepdoc, told him it "isn't" necessary, as he was feeling
fine, and that about 25% of people who are positive get rid of it on
their own...)  Anyway, this doc actually told my SO that if *he*  didn't

cut his hair, shave off his beard, wear some "decent" shoes, slacks, and

shirt, that *I* would more than likely be denied a spot on the list.

Now this sounds totally ridiculous.  Not that he wouldn't do the hair
thing in a *second*...I'm barely managing to keep him from going to a
friend and having them cut it all off...but why in the HELL would that
matter?  Besides, the board *knows* how poor we are right now -- we are
both on STATE disability (I get 150/week until it runs out) and got only

knows how long it will take my SSI or SSDI to come through...we have
four kids:  Two of them {*filter*}age boys who have hollow legs when it comes
to food, an "average (!?) 14-year-old daughter, and a handicapped
11-year old; plus he's a big guy -- second-hand stores don't usually
carry much in his size and no way can we afford to buy anything new.

So if HE has to change his appearance, what about ME?  I'm the one that
needs a liver -- will my wearing hippie dresses (that hang on me these
days) keep me from getting a liver?  For that matter, even though he
thinks I'm beautiful, I'm certainly not Mrs. America -- will being ugly
keep me off the list?

I know, I know this sounds crazy.  But we have heard such crazy "rumors"

that even the ridiculous is likely to be true...And there's no one to
ask.  The local support group has *never* had anyone who's had a Tx or
even on the list; they're all on chemo; they don't know.  I don't know
who to ask.  And I'm so paranoid I can't even come right out and ask my
hepdoc.  Who, by the way, I have my doubts about, also.  Anything that
is not clearly related to liver, he tells me to see my family doctor.
Sometimes I don't KNOW if it's related...and my family doc knows about
as much as *I* to -- in fact, we are learning about this together; we
exchange research.  For instance, I'm just now getting over pleurisy.  A

couple of days ago, someone suggested that it could be related to liver;

even though I have no ascites or edema, I don't I think What
if it *had* been related to my liver?  I think the main reason I don't
trust him is that I don't KNOW him -- I've only seen him three times --
the first time was an office appt which I have no recollection of, being

so foggy then; the other two times have been to be scoped, and he
actually came out and told me he didn't have any time for questions.

I'm sorry, I've made this incredibly long.  It's just that I'm
scared...I'm terrified.  I don't know WHO to ask ANYthing.  And the
closer I get to my evaluation date, the worse I get.  I feel llike I'm
constantly in the middle of a panic attack.  I'm so depressed that I can

be talking about oh...making dinner with my SO...anything...and suddenly

there are tears just running down my face.  I never felt that big ole
ulcer, but suddenly I have this weird feeling in my diaphragm that makes

it hard to breathe.  I'm in a vicious circle.  I'm SO exhausted that I
almost feel that I'm getting foggy again -- which terrifies me even more

-- but I know it's because I can't relax enough to sleep.

Can't someone PLEASE help me?  Any people out there who have been
through the evaluation process?  My transplant team is in SF (but not
UC; I'm beginning to think that's where I should've gone).  If there's
anybody who's been through it -- the eval process -- PLEASE talk to me.
I'm SO scared that I won't get a spot on the list -- which will be the
signature on my death certificate -- I'm *nearly* suicidal...but I know
that I have to at least put on a really good show in front of these
people.  I'm SO scared.  Even if someone will just TALK to me.

Sorry I've made this so long.  Thank you for listening.


Sun, 05 Aug 2001 03:00:00 GMT
 [ 1 post ] 

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