I hit a bump in the road to SVR, just got out of 3 days in the
hospital,  and I'm trying to figure out how to handle this.  TX is in
jeopardy permanently, I'm reeling a bit,  but I would appreciate
thoughts and opinions on how to procede.  My story is maybe to long
winded for some who may wish to skip to the end titled situation.  I
seem to be in some deep sh.t and I'm looking for a paddle.

My Nightmare:

I had been struggling with a severe skin rash for over a month trying
to find a solution starting with over the counter topical
corticosteriods and itch creams and moving on to triamcinolone
acetonide cream and some other stuff from the doc.  While the
triamcinolone combo thing worked like a miracle for Donald Klein, it
didn't touch my rash.  I found I could get partial relief though by
applying skin moisterizer like Lubriderm and some stuff the doc gave
me every few hours to fight the drying effect of the inflammation as I
waited for a dermatologist appointment.  But more complications
ensued.  On Sunday, I wake up and my face is hurting and feeling
swollen.  So I head over to the mirror and see this monster head
staring back at me.  But I can't get my glasses on my face right.
I've got 3 more days to the appointment with the dermatologist but I
decide to call in Monday to update my Liver Specialist if the swelling
doesn't recede.  But Sunday is a tough day and a rough night and
Monday morning it's worse and my eyes are killing me.  I call in and
they want to take a look right away and I'm up for that.  So Quasimodo
grabs his lubriderm, slides a baseball cap over his face, and departs.
Well, my liver specialist gawks and says she has never seen a case
like this and hails a senior doctor at the Veteran's Affairs clinic.
My armpit lymph nodes and groin (inguinal) are very swollen, my lips
cracked and bleeding, mouth sores, leathery red skin hanging, and I'm
a mess.  The senior Liver Doctor mutters something about possible
Stevens-Johnson syndrome and they want to admit me to the hospital
immediately and I don't want to but it's the only solution they offer
until I can see the dermo in 2 days and they insist I shouldn't be
alone and that's how I live. The dermo won't be there until Wednesday
so I say f.ck it because I can't work or do much of anything anyways.
But in the back of my head I'm worried about what's going to come of
this.  But no less than an hour after I get my bed a team of doctors
and some students (I think) are gawking at me asking all kinds of
questions, revisiting my hepatitis c history, poking prodding.
Bloodwork, vitals, but no helping.  And they keep coming back with
others.    Dinner at 6 is a liquid diet and I ask the nurse who
doesn't know why but tells me it's too late for dinner but she'll get
breakfast straightened out.  As I trudge back to my room I look into
rooms with mostly WWII or Korea veterans chomping solid food but I
tell myself it probably sucks anyways.  So, it will be jello, broth,
and juice as my only meal of the day since I've got nothing less than
a sawbuck for the candy, chips and soda machines.  But I've got my own
room because they haven't ruled out that I'm contagious and at the end
of the corridor which is the best place to avoid the noise.  I finally
get some itch medicine about 8PM , hydroxyzine I think and it's a
night of hacking and moaning vets, with machines going off playing
tones and nurses coming to turn them off.  Getting old is scary.
Well, I just barely made it to age 47 without being hospitalized.  Not
bad.  But I miss both doses of ribavirin and they tell me no riba or
pegasys until they figure out what's going on.

Moving Along

Tuesday, more teams of doctors poking, prodding and questioning, but
the lab monkey is constipated so there's no excrement to fling at
them.  And I might catch something from them if I bite.  But breakfast
was good after I send back the jello this time that was supposed to
have been straightened out.  More itch medicine and calomine lotion is
added.  Oral cortico steroids are coming.  I tell them I'm not
prepared to stay beyond Wednesday.  They tell me they're doing their
best but it takes time because my reaction is not typical and the
final word won't come until the dermatologist sees me Wednesday.  They
want me to get tested for HIV!  I decline.  It was the American Red
Cross who not long ago detected my HCV antibodies and I don't think
they'd only get 1 out of 2.  I'm not gay and have not come close to
anybody's blood or did anything "unsafe" since.  But they "don't want
to leave any stone unturned".  But I think I'm being categorized
because I have HCV.  That probably given by the vaccination guns as
they mass processed us unsafely when I was in the Marines.  I agree to
the test but they'll have to get the *compassionate nurse* to come
back with the papers.   I still make the Frankenstein monster look
handsome but I'm feeling a little better.

The Dermatologist

Wednesday, prednisone and other goodies, and the usual.  Compassionate
nurse comes returns but the agreement also states I have to agree to
counseling in person whether or not I test positive.  What?
Arrggggghhhh!  She nauseates me into submission with her kindness and
understanding.  I hate her and I hate myself for doing it.  f.ck 'em.
Let them think I'm trying to hide something.   But I take pleasure in
knowing I'll put her through hell trying to hook up with me when my
results get back.  I WILL make her leave it on the answering machine.
A pack of doctors looks at me once more before my appointment with the
dermo guy and with them is Big Chief Liver Doctor and I hear her tell
them in the hallway that I'm just past week 17 with favorable genotype
2 and undetectable and may have to be taken off treatment if it turns
out to be a reaction to the drugs! And we currently have no other
treatment! My attending physician looks in my room sees that I am
listening and studies my reaction.  I hold eye contact until he turns
away and then I walk into the bathroom and choke.  Finally,
appointment time comes and I head to the wise Dermatologist. Will, he
smile upon me or curse me?   By this time I'm "scaling".  Reptilian
like scales everywhere even on my face, ears.  I'm morphing into the
Creature of the Black Lagoon but will this hold up until halloween.
As I wait to be seen my attending physician goes by and heads to what
I presume to be the dermo's office.  I don't like this.  A conspiracy.
Not good.  Well, the dermo finally sees me and calls in 2 doctors who
amazingly I haven't seen before.  He quickly describes a classic case
of drug (allergic) reaction noting the symmetry, see there, there.
These disk patterns here, here circular. So symmetrical here, here.
It's not Stevens Johnson (what has some guy's dick have to do with
this?) because this, that - open wide yes - there, there... No mucosa,
swelling.    Me:  So it is a drug reaction then.  Him:  Yes.  Me:
Allergic?  Him:  yes.   Me:  Does this mean I cannot continue with TX.
Him:  Not necessarily, perhaps you can continue with one of the drugs
or something can be worked out.  That will be for GI to decide.  Me:
Oh.  The appointment is over in 10 minutes if that.  Time to wrap
things up.  Feeling doomed.

The Kneecapping

It's time to be discharged and my attending physician tells me to stay
off tx until I complete their prednisone and other sh.t regimen and
see the GI department in a week.  The nurse has a list of appointments
for me.   Fighting back tears I protest saying I'm too close to stop
now.  I cannot stop now.  There approach is too conservative and may
cost me my SVR.  Do you understand what's at stake here?  He says he's
not unsympathetic to my position and asked me if I'm familiar with
anaphylactic shock.  I say yes but he explains anyways about initial
reactions to drugs, insect stings that when followed by a second
exposure the tongue swells up, the throat closes, and you're lucky if
you can make it to the emergency room even if someone is with you and
you said you live alone.  I say I'll just stop the Riba it had to be
that and I explain why it had to be the Riba.  But he says they cannot
determine which drug caused the adverse reaction.  It will be up to GI
to determine how to proceed.  I get angry he tells me not to get angry
with him. This was decided by a team of doctors and he couldn't change
it if he wanted to.  I'm still badgering him and he doesn't even
appear to understand about liver staging.  "Hepatitis C isn't staged".
He smiles and says of course we can't make you stop using what you
have!  He's through arguing.  Pharmacy gives me my drugs, I check out,
I pick up copies of my lab work and over 100 pages of physicians
comments, observations, more sh.t than I can believe even me first
refusing and then agreeing to the HIV test and comments about that.  I
attempt but am unable to get one last 4 pack refill of pegasys that
was waiting for me before all this transpired.  That would give enough
to get through week 23 or 24 if I decide to carry on without their
support.  I curse myself for not picking it up sooner.  I head home
pondering how quickly things can go so awry.  I want a piece of
someone.  

The Situation

I'm going to call GI tomorrow and ask them if there really is any
chance I may finish TX.  But I overheard the BCLD and I don't think
they will be inclined to risk another adverse reaction.  Tomorrow
would kick off week 18 of 24, I'm genotype 2 with approx 80% chance of
SVR if I finish treatment.  I think they're going to tell me I'm done
now.  I could see it on my liver specialists face.  The way she looked
away from me.  Probably schedule some follow ups to see if I relapse.
I was undectectable at week 12 and now so we're going to see if 17
weeks minus some riba is good enough for an SVR.  My hemoglobin is a
crappy 9.7 but most labs aren't too bad for a txer.  But the
implications here are that I cannot resume pegasys/riba or
anything/riba because it may kill me.  That I've developed an allergy
to 1 or both so there's nothing on the table for me should I relapse
after quitting before week 18.  Maybe that will be enough.  But maybe
it won't.  There may not be another chance for me for a long time.  I
do not know the condition of my liver because the BCLD convinced me to
skip it because a hemangioma on my liver complicated the procedure
making it risky and I had great bloodwork with LFTs normal and a good
ultrasound.  And I was type 2 so it should be a piece of cake anyways.
Yeah, right.  I should have risked it but that was then.  With that in
mind I could lose big here.  My liver could be hurting and I've
certainly tested it with hardy drinking though never an alcoholic.  My
platelets were excellent so it's probably not too bad but still.  My
chances may be slipping away here but it looks like I have 3 doses of
pegasys and more than enough riba.  It may help my chances to clear
but I may be risking my life taking either.  I've thought about
talking to another doctor and seeing if they'll give it a go.  Maybe
try interferon 2B alone (Pegintron).  I don't know.  I'm trying to
figure out a solution.  I could probably tolerate my regularly
scheduled shot.  I'm feeling pretty good now and haven't missed a
shot.  Thoughts, suggestions, comments are welcome.    Well, I got
like a 150 pages of documentation to pour over here and it looks like
they quoted me wrong on some things.  There's got to be a way to keep
the party going.