I was diagnosed w/hep c a little over a yr ago. I went to a doc in December of last yr who was a supposed to be one of the best here in my area-I figured I would get some kind of counseling, discuss my past with them (I went thru a phase where I drank like crazy for years, popped tylenol like candy, etc) have some more blood work, see where my viral numbers were, maybe discuss a biopsy and see if they think I need treatment.
Instead, I get shuffled into a room, a nurse comes in, hands me a booklet, tells me she wants to sign me up for a clinical trial, here's the info packet-take it home & read it. I asked if I would be tested to see where my virus was at that point and she says "we already know you have it, there's no need to test for anything". I left feeling like complete crap. I was even more depressed than I was when I got there! I wasn't sure I wanted to do a trial, so I gave it a few weeks and decided to go ahead because they had told me it would cost thousands a week (or a month, can't remember which it was) to treat out of pocket even w/my insurance...after a few days, they called me back saying they were sorry but I'm overweight so I don't qualify for their trial. Call em back when I lose 20 lbs at least. Talk about knocking me down even further.
I called another place last week and have an appointment next month. I don't want to keep skipping around to different places...I want to get with ONE doc who will take this seriously. It's MY life and I'd like someone to act like they care. I have questions written down to ask...even though I already know the answers to most of them from my own research. I just don't want to be dismissed again. It's very frustrating and it makes me feel like I'm less of a person because I have this stupid disease.
So has anyone else had a similar experience or can you offer me some wisdom on the subject? I have a tendency to get really upset and leave the doctor's office thinking I'll just forget it, let the chips fall where they may. THANK YOU!View Thread
I have had nothing but troubles getting past the nurse practitioner and never mind getting any info on meds (besides trying to make me do clinical trials-which I don't "qualify" for due to weight). I am so frustrated.View Thread
Is it normal to be SO exhausted? I'm wiped out and my body hurts so bad. I was diagnosed with fibromyalgia years ago but am wondering if it's the hep c doing this to me.
I have been to see a gastro but they said I need to lose 20 lbs before I can even think about doing one of their trials-and when I asked about the cost of treatment with my insurance (BCBS TX, although I live in MO), they said it would be very expensive...something like a grand a week just for one of the meds. Should I go to another gastro or does that sound about right for the costs associated with treating it...I have geno 1a and my one and only test (a year ago) was 1,033,040.
I didn't realize the GI I went to see is also a hepatologist...he's supposed to be one of the "best" in my area. I haven't even seen the doc himself yet, but they had me meet with a nurse, who is the one who suggested I do trials.
What really irks me about the nurse suggesting I do trials, she looked at me and could see that I'm overweight...why did she even bother to offer them to me if I'm too fat? Kinda stupid if you ask me.View Thread
That's what I thought...plus I will admit I haven't led the most "healthy" lifestyle. I had my times where I drank too much but as of my diagnosis, I haven't touched a drop (not that I was an alcoholic-just liked to have a few beers).
I've been meaning to call and schedule one, guess it's better late than never.View Thread
The fatigue is frustrating. I feel bad because I could get so much more done but I do one thing, then sit down.
Would you recommend I tell my GI that I want to get another blood test and a liver biopsy or do they know what's best? The nurse told me "we already know you have it, so we don't need to do any more tests.View Thread