Newbie!

[QAJ1]

Just wanted to Say hello
I was just diagnosed with HEP C in December and have already had biopsy and i have stage 4 scarring and of course i got this news over the phone while i was in the hospital with my grandmother dying, needless to say i friggin finally lost it, it was the last straw. but i picked myself back up and have a better attitude now and my grandmother passed 2 days after that.

my doctor is Mr. Gloom and Doom but is wanting me to take treatment thought i was going ot start today but doctor failed to tell me i have to submit to insurance company and then they have to approve it and they only meet once a month so yet again im in limbo. he does not sem to be very optimistic that the treatment will work. i ahve not heard of insurance denying but that is also a posability. but doctor says i still have my liver function and its doing its job so i guess thats a good sign but i have had this for awhile. and have alot of damage.

still scared and worried but hopefully i can get through this.

[springfever]

I think you should see the hepatologist before you start tx, if possible.  And in the meantime, read, read, read, all you can.

I will start tx soon and have added Alinia to my regimen.  I will take it for 4 weeks before I start interferon/riba.  Here's info on Alinia.
http://www.romark.com/news/04232008.aspx

Maybe a long shot for me (Genotype 1) but if I can increase these awful odds even a little, I'll try it.

Stay positive!!  The winds are strong, lean in.

[QAJ1]

yes this is very scarey and i am try to stay posative but it seems the more i read the worse the prognosis.

but evidently im in early stage cirhosis so maybe that will be helpful.

i have quit drinking and smoking. and the drugs were gone many years ago.

i just emailed him hopefully he will respond.

Thank you so much for the reccomendation!

you are correct it is just 45 to 50 minute west of here on I-64

[Bill1954]

Cool! I can’t personally vouch for his bedside manner, but I hear he’s a good doctor. He attended a ‘march on Washington’ for HCV patient rights in D.C. a few years ago, and met members of this forum there; he was said to be very kind. I believe from memory that it’s only 45-50 minutes from Frankfort to Louisville (out I-64?); not too bad of a drive. Good luck going forward—

Bill

[QAJ1]

Thanx Bill!

Funny i was just looking at him i am only 45 minutes from his office! louisville is not that bad of a commute from frankfort. i used to do it every weekend when i did guest spots on a radio show there and i still have alot of freinds there.

was just wondering if he had good patient skills and how involved he is. guess you just answered my question.

[Bill1954]

If you can find your way to Louisville, you might try Dr Bennett Cecil; he’s been treating HCV for years now, and has been involved in prison and veteran’s advocacy groups as well. He is known for thinking outside of the box; we’ve had patients in the forum that have traveled as far as Washington State to treat with him. Here’s some contact info for him if you’re interested:

Dr. Bennett Cecil
1009A Dupont Square N
Louisville, KY 40207
(502)-894-9950
FAX: [phone]

Good luck—

Bill

[QAJ1]

wow doing a search for hepatologists in the area and not anything to choose from just doctors who say they also do that but not their main practice.

[Mary4now]

I think florida has some of the best hepatologist maybe at Shands?
My girlfriend (friend
and gods speed, much love, great success, M

[QAJ1]

yea i think im going to wait till the treatment is approved then start then switch to hepatologist.

i am going to go monday and get a copy of all tests results.

just trying to keep it as simple as possible i know this is not going ot be easy.

[Marc1955]

The doc doesn't sound right to me. You might want to read the thread I started yesterday about being denied an extension of treatment by my insurance company. This doc might be convenient, but he sounds kindof clueless. The treatment is very complicated. You really want a doctor who can help you make it through. You can't make all the decisions for yourself. It might seem right now to choose someone who's convenient to your home. I assure you that it won't make so much sense if things start getting complicated.

For most of us, the daily communication is with a registered nurse in the doc's office. I'm not sure the doc you are seeing has that kind of expertise.

Why will you cut things off if you haven't cleared in 12 week? You have pretty advanced liver damage. If you are genotype 1, you continue treatment so long as you have a 2-log drop by week twelve and clearance by week 24. It doesn't sound so sound to set that kind of artificial target.

That perhaps helps make the point. You cannot control this treatment. It controls you. You need a doctor who is a real help and ally.

[QAJ1]

well a search in my area show no hepatogist in my community but they do have a few in the city i work in and that figures because it is a larger city and the wait time in office is horrendis in that city which i hate.

the doctor i have now i can get in and out in a few minutes in the other place i will have to wait hours . but i agree it might be better to see a hepatologist. My GI seems to be up to date just has no personality lol and is gloom and doom but i dont want him to cut me off if im not cleared by 12 weeks.

Thanx! :-)

[Isobella]

Welcome to the forum.  I totally remember those first months after being diagnosed.  So sorry you had to go thru all that while losing your grandmother, too.  

HepC is definately a diagnosis of "hurry up and wait"  My tx was supposed to start in April....I finally got started the last week of July.  It can be a frustrating time waiting to get started.

Use the time you are waiting for insurance approval to learn as much as you can about this disease.  This forum is a great source of information-read through the archives and ask questions. Lots of helpful people here to help ya get thru this.  

You want to make sure your doc is a hepatologist. They will be more up to date with their information and will hopefully guide you well through the process of treating and give you rescue drugs to help along the way.  

Wish ya the best =)

[QAJ1]

well since my doctor just submitted paperwork to insurance for treatment wonder if i should wait for that to get approved then go to a hepatologist? he seems to be doing the right things but his bedside manner is awful i go into office with a good attitude and usually leave thinking im going to die. he is not giving me much hope.

[springfever]

You've come to a good place for advice and support.  I know you're in shock right now, I remember the feeling well.  You'll get a lot of good advice soon from more knowledgable members but I know you need to find a good doctor.  A hepatologist is best.  Dr. Gloom and Doom is not what you need now.  Find an optimistic hepatologist experienced with HCV.  
So sorry you lost your grandmother.  
You can get through this!
Welcome and good luck.