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Has anyone else had problems getting the doc to LISTEN?
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PSJ1970 posted:
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!
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griz1991 responded:
I didn't have the same experience but I understand how you feel. When I was diagnosed my Dr told me I needed to see a Gastrointestinal Doctor. I called 3 different ones and they all told my they don't see patients with Hep C so I just to heck with it, I wasn't having symptoms so why bother.
I have B & C, I was diagnosed with B back in the 70's and I know how I got that (IV drug use) but have no clue how I got the C because I haven't used any drugs since the 70's. The only thing I can think of is the fact that I had a lung removed in 98 and they messed up. I ended up having to spend 4 weeks in the hospital instead of the 5 days they told me.
As far as the treatments go, I wouldn't do it anyway. My best friend chose to do the treatments and she has been in and out of the hospital since she started 5 yrs ago, she has developed brain tumors among other things and before the treatments she never had any symptoms. So maybe you're lucky they wouldn't do anything.
 
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oldtiff47 replied to griz1991's response:
LET ME TRY THIS AGAIN....POSTED ONCE DIDN'T SHOW UP....

YOU COULD HAVE GOTTEN HCV IN THE 70'S TOO.....FOR SURE...

I DO NOT FEEL TX CAUSED YOUR FRIENDS BRAIN TUMOR....HCV CAN AFFECT MANY PARTS OF OUR BODIES....FOR SURE...IT SEEMS TO WAKE UP OTHER THINGS GOING ON IN OUR BODIES...

WHEN I DID TX IN 12 YEARS AGO I ONLY HAD A 30% CHANCE OF CLEARING AND I DID...MY STAGE 4 LIVER IS OH SO HAPPY I DID IT FOR 48 WEEKS...

TIFF
DON'T TAKE YOUR ORGANS TO HEAVEN...HEAVEN KNOWS WE NEED THEM HERE !!
 
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PSJ1970 replied to oldtiff47's response:
All I know is I just want to be HEARD and not dismissed again. My husband normally goes w/me to doc appointments or I go alone-he has to work so I will take my best friend.

I read that the chances of knocking the virus down or clearing w/treatment is around 50%. Not sure if it's true or not but it's worth a try I guess.
 
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glowspark replied to PSJ1970's response:
with the triple therapy that is available nowadays the success rate is 80%
 
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katfish responded:
Glowspark is right, the new triple treatment has up to an 80% cure rate from what I've read. When I went in they told me I didn't need to know my geno type till I started treatment, now a year later I still don't know and am having to pester docs to get tested and find out!!! It can be really frustrating I know, I hate not being treated like I'm a person because I have this, but just hang in there! Just because you don't have noticeable symptoms yet doesn't mean it won't kick your butt in the long run, try dif docs til you find one that works!! There are good people out there that want to help us, even if they are few and far between.......
 
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2bnlitend responded:
First off you need to find a doctor willing to treat; for instance in my area, there is only one gastroenterologist willing to take on Hep patients.

Viral load simply tells you how many critters are in your blood; it doesn't tell you the seriousness or progression of the disease. Rather, it's best to keep an eye on liver enzyme levels (AST/ALT); if they are outside the norm a biopsy may be ordered.

HCV is very slow in its progression; 20-40 years before it may become serious. Example: I am 57 and was diagnosed in 1997 with a guesstimate of contraction in the late 80's. I quit drinking/drugging in 1990 and the doc said it definitely slowed the progression to liver problems (fibrosis to cirrhosis).

My biopsy showed grade 1 level 2 fibrosis after 25 years of being infected (grade 4 level 4 means a transplant or ... die). Liver functions were in the normal range and I still chose a triple drug treatment a year ago June; IT IS NOT FOR SISSIES!

Need support to get through it, need some financing from wherever it can be found, insurance, possibly will need time away from work, will need to see a blood doctor to keep white and red counts up to tolerable levels and of course mo money to do that.

After 11 months of feeling low I have emerged from treatment with no trace of HCV. I am 3 months out awaiting the 6-month post treatment test for the virus and the subsequent 'cure' declaration.

If you have time based on this input there is a treatment supposedly on track for FDA approval at the earliest sometime in 2014. In preliminary testing (studies in all) it shows a promise of 100% cure rate using two drug therapy with the absence of interferon. Booyah!

Sometimes I think it a shame I didn't wait just a bit longer, I wouldn't have missed five months of work and lost 15% of my body weight, but I'm still here virus free and that's what counts.

Chin up, believe in living, pray and the good lord will see you through this and any other adversity.


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