Re: advice wanted re: treatment??

October 20, 2008

Ok,

I went to the doctor today (gi doc) she told me to finish the interferon and

rebetrol I am on for the next 3 weeks then I will go off the treatment she says

I have not responded and most people after 6 months if they dont respond they

will not. She also wrote some orders for a abd ultrasound and some labs to

detect cancer. She tells me not to worry there is a new treatment coming????

Anyone heard of new treatment for Hep C???

Then she asked me about an oncologist I use to work with as a nurse so I am

freaked to say the least but she kept telling me even if I did not respond I was

giving my liver a break??? My white count is 2.1 Hgb 10 I am short of breathe

and not really sure when I will feel better then they will not let my son have

an MMR because of my labs. So tomorrow I am going during lunch time to the

primary doc's office to get a release for my son to keep going to school and to

find out when I can get a flu shot and when he can have his vaccine. Jesus I am

a nurse and they tell me nothing I can not imagine how they treat anyone else

with no medical background.

Any suggestions of what I should do next. I guess I will hit the herbal route

until this " NEW " treatment comes out.

Oh and God bless to all suffering from the dragon!!

advice wanted re: cirrhosis

>

> Hi Everyone -

> It's been a while since I've posted, but after a couple of recent doctor

> visits, I need to reach out to the group for opinions, advice, and

> support. That does not exclude any of you who are not going through

> what I am. I am welcome to hear from anyone who has anything at all to

> say that might help.

>

> A little background is necessary. During my training in Grad. School, I

> was inadvertently stuck by used needles by harried nurses. I contracted

> Hep. C. This was 5 years ago. 3 years ago, my enzyymes were whacked

> out, so they did bloodwork and based upon those results, followed with a

> live biopsy. At that time, I had some minor fibrosis, but due to the

> fact that I also suffer from major depression - recurrent, they wanted

> to wait a bit before the " cocktail " of interferon and ribarviran.

>

> One year later, I had my second biopsy and had progressed to end stage

> cirrhosis. I've know this now for a year, but it still flies in the

> face of the normal progression of the disease. As I am sure you all

> know, it normally takes 3 decades or so before one begins to develop

> liver cancer, hepatic encepaphalopathy, or CIRRHOSIS. And the chances

> of that happening are 1 in 5. So, not only am I very much in that

> unlucky 20%, but I developed end stage cirrhosis in one year - if you

> consider that the year before, the biopsy did not indicate impending

> cirrhosis. I suppose you could say it took from the time I was

> infected, but even that was a 5 year window for my Hep. C. to become

> Cirrhosis.

>

> At the time that the biopsy showed cirrhosis (severe), they decided to

> do the cocktail. They insisted upon doing it in the hospital - at least

> at the beginning of tx. So, the G.I. tells me that I still have a 50/50

> chance of eradicating the Hep. C., and the hope was that my lliver would

> regenerate. (It was only later that I learned from my current doc. at

> Mass General in Boston that once you have developed cirrhosis, the

> treatments has only a 5% chance of having any effect whatsoever. On the

> Hep. C. But it sure did have an effect on my. I immediately shot to a

> body temp. of 106, stopped eatng, couldn't sleep, attempted to murder my

> father, attempted suicide and more. After four weeks of the most

> hellish experience of my life, one morning I woke up and thought " I

> can't do this for a year. Just can't. Something bad WILL happen. " The

> day I made that decision I had the most violent and longest seizure my

> dad has ever seen. (He's seen his share in healthcare.) I eventually

> came out of it and that's when I switched G.I.s who informed me that he

> will NEVER give me that treatment again.

>

> That's the story thus far. Now the questions:

>

> 1) Since my body cannot tolerate " the cocktail " (and by the way, it

> infuriates me that there's only one option here, considering that

> cirrhosis is the 7th leading cause of death in the U.S.) Personally, I

> think there's a bias, since some cirrhostic patients got that way from

> ingesting too much alcohol (another under-treated disease) with a BIG

> ol' stigma attached. For those of you wondering, I haven't had a dring

> since college and I'm 48 y.o. But I digress... Since I cannot take the

> only treatment for Hep. C., if I am lucky enough to get a liver or

> portion of a liver transplant, what will stop the Hep. C which still

> rages throughout my body from kiling that liver. But more importantly,

>

> 2) Tranplantees have to take medication for the rest of their lives.

> Guess what medication is used for anti-rejection of the liver?

> Interferon and Ribaveron. I went to a seminar on drugs for Hep. C. and

> learned that there are none that will be available for at least eight

> years. But that's only the time it takes to get through the FDA. I've

> tried geting into Hep.C. trials, but because I am cirrrhotic, I am not a

> candidate for EVERY ONE I've pursued. It just happened so fast, I

> didn't even consider trials -- thinking I'd not be the one of five and

> that I had decades before cirrhosis would devlop. Anyway, again there

> is only ONE anti-rejection drug for liver transplantation, as is the

> case with Hep. C. - and, gee, IT'S THE SAME DRUG!

>

> I'm confused, frustrated, and feel doomed. I live about two hours from

> my G.I. and he doesn't want to see me for a year...I suppose because

> there's nothing he can do. As a proactive person, I asked him what I

> could do. He shrugged and said " well, there's really no 'liver diet',

> but certainly avoid salt.' He is a genius - don't misunderstand me - he

> is a truly wonderful doctor and I feel like I'm in good hands, however

> useful they may be in my case.

>

> Any questions for me? I'd really like to hear from as many of you as

> possible. My depression is, naturally, compounded by this along with

> the fact that I have Seasonal Affective Disorder. I wish those damn

> lamps weren't so expensive. Anybody know of a place that sells them for

> less that half of my disability check??? Does anyone else experience

> confusion and forgetfulness. What about fatigue? I " hit the wall " at

> noon and can sleep until the next morning. Please share your advice,

> quesitions, experiences, and hope.

>

> I maintain an open heart and an open mind, still have a great sense of

> humor (although it's a little warped - but in this country how could it

> not be???) and, most of all, I have a very rich inner life. My

> spirituality has literally saved my life throughout this journey and

> continues to - moment by moment. In closing, I'll share this with you

> and really hope some of you will find it in yourselves to respond.

>

> Submission to God's will is the softest pillow on which to

> rest.--Unknown

> I send my wishes for well-being to all of you in this group. We are

> faced with a challenge. Do you know what the Chinese character for the

> word " crisis " is? Danger and opportunity. My degree is in Rehab.

> Psychology (ironic? Ya think?). And I'm willing to help any of you who

> reach out to me. It's important for me to be in contact with this group

> and make that promise. Hope to hear from some of you soon.

>

> Peace and well-being,

>

> jamie0916@...

>

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October 20, 2008