Advice from the veterans on Hep C

[dgeist44]

Good Morning,
I was diagnosed with Hep C in 1996 and don

[BNR]

Here's a  link (hopefully) to a good article in todays NYT about becoming "the patient from hell" regarding your treatment. This man has mantle cell lymphoma, but the principles apply to HCV -- tailor treatment to the individual, learn all you can, push your doctors, etc. If we have to, some of us may be able to live by controlling HCV, even though we can't seem to cure it.

http://www.nytimes.com/2005/05/03/science/earth/03conv.html
[If the link doesn't come through, it's under the Science section, "Lessons of Climatology Apply as a Vicious Front Moves In."

[ificu1st]

I am a veteran.  I am being treated through the VA.  I went to the VA clinic in Austin Texas the first time around.  They Had a Hep c clinic every Wednesday.  I was treated with the peg/riba that time around.  Unfortunately after 6 months my viral load shot back up to over a million.  Now I am being treated through the VA in LA in a study with UCLA.  I am taking daily shots of infergen/riba.  For me the VA has been a life saver.  They are very competent as far as I am concerned.  I went to a small clinic here in Bakersfield CA and realized they were not exactly up on Hep C.  It took a while but I pushed for a referral to the GI/liver clinic in LA.  You have to be determined and patient but I finally got my referral and they have been taking good care of me since then.  Mine is not service related but I don't have a lot of income so I haven't paid for anything but I get all my tests and meds for free.  So go to the nearest clinic and if they don't have a specialist, push for a referral.  The VA has the latest, greatest treatment available.

[AK - Hepper]

I wouldn't be overly concerned by the pain, I had some pretty bad pain for years before my biopsy and it showed only minimal damage.

You might take a look at your diet, that had a lot to do with my pain levels.

[mbn]

Sorry if I misinterpreted your heading. I am clear of the virus but unfortunatly the 'fog' still rolls in and out! Still most of what I said applies. B

[Kanzou]

You did not state the type of CT Scan you had. There are two types; Standard and with Contrast. Only the latter will show a lesion on the liver. A lesion will not appear on a standard scan and  the radiologist will pronounce your liver fine. Get this done to rule out HCC.

[LvdByGod!]

i agree with all the above comments...especially that you really need a biopsy again...it's been 8 years if i'm reading your post correctly...if you are "watching and waiting" for new hepc treatments then biopsies are supposed to be given to you every 3 years anyway...it has been 8 years since your last one...this is a long time, anything can happen in that amount of time with hepc...but prayerfully nothing has changed for you...

a ct scan of anytype is not able to give the dr any idea of the "cellular changes" existing in the liver...

take me for example...i just had a ct scan a couple months ago, (the good kind) and all it shows is a fatty inflamed liver...which in overweight people is "normal"...but here is the kicker my biopsy 2 years ago shows grade 3/ stage 3 bridging fibrosis which is a hair away from cirhosis and some concider bridging to actually be cirhosis...and recently i think i had my first case of asceties which if true would indicate that i now have cirhosis and could be beginning to decompensate...if i judged the condition of my liver on the ct scan by itself, i would be thinking i was just fine with a little fatty liver from being overweight...and why should i then treat i would conclude...and that could be for me be a fatal mistake.

so you really need another biopsy to tell you for sure if you're progressing or not...especially if you are planning to wait awhile longer before treatment...you have to find out if you can afford to wait any longer...anything over stage/grade 1 is indicated as a need to start treatment by many drs...and alot of folks don't want the liver to even get that bad before they get treatment...the worse shape the liver is in the worse the chances for clearance also...

your liver "pain problem" is a big concern...if your liver is normal you shouldn't be feeling any liver pain...the physical symptoms from a diseased liver does'nt really happen until the liver gets really bad... now it could be your symptoms come from some other physical problem or even just are hepc related rather than liver damage related...but you won't know for sure without a biopsy...

p.s. the ct scan is great to tell if there is any inflamation or if the texture of the liver is normal or not, it is used to check the overall size of the organ and also to check for liver cancer, or bumps or lumps like tumors beginning... but it can not see cellular changes until they are bigger problems like tumors starting or liver shrikage from hardening...  

hope this helps you...

[mbn]

    dgeist, you said you have a dissability, is it service conected? If it is you can go to the nearest VA hospital and be seen by the doctor almost imediatly. If not it may take a little longer to get signed up. You will then have all the blood test and probably be scheduled for a biopsy and begin treatment within a few months maybe sooner depending on the case load at the HCV or specialty clinic. If you are low income, treatment is free. If not (over 25000 i think) it is 50$ per dr visit prescriptions 7$. They are up on all the latest practices procrit ampogen etc. I have been through treatment twice, first with the three times a week shots and riba second time one shot wk and 1200 daily riba. Second time worked, I am 12months clear! What ever you do stick with the treatment you will have some pretty bad days but just write this forum there are really good folks here and they will pick you up and let you know you're not alone.  Butch

[rearfang]

Ditto what layla and Cuteus have said. There is no such thing as "inactive" Hep C. The sensation you are experience sounds as though you should find out ASAP the current status of your liver. There are definitely programs that cover the cost of treatment to assist those who are in financial need. Look into the Pegassist program 1-877-734-2797 or Commitment to Care 1-800-521-7157. But, please, do get a biopsy and learn what you can about this illness so that you can make an informed decision. It seems some doctors are all too willing to ignore this illness and suggest that people can afford to wait. It's your health, not theirs.
Best of luck, let us know how it goes.
Lauren

[mbn]

Chev, very good to hear you're doing fine! I check in every once in a while just to see if anythings burning, lol. Also glad to see if I did read dgeist subject line wrong, I wasn't the only one! Take care of yourself and keep up the good work. Butch

[bon_vivant]

Chev....
You are right... we seem to be getting a flood of good news here recently... Isn't it FABULOUS!!!!!

MBN...
I don't know you personally, but am so glad to hear you cleared!
CONGRATULATIONS!!!!
I am hoping round two will be the majic number for me too!
:)

[LvdByGod!]

WHERE ARE THOSE VETRANS? heeheehee! (rosanna rosanna dana) heeheehee!

[dgeist44]

I was never told what genotype I was and frankly never heard the term until yesterday. I am nieve and that is why I seek your advice. Apparently my docs were not very informative.

[cuteus]

Layla has given you great suggestions, please follow them, especially the biopsy one. It has been over 6 yrs since your last one and the best way to determine fibrosis level is the biopsy. If you are on Medicare you might also qualify for Medicaid and I believe Ma is now covering PCR tests and treatments. If you are denied, then the drug co. might have financial assistance. What genotype are you?

[layla]

I don't know what innactive hep c is. If you have HCV it's active. Progression is different for everyone and can change at any time. For this reason I would choose to treat but that is just my choice. The treatments work better with less damage and at younger ages and it will be easier to do while in better health. There are poeple who chose to wait for personal reasons. It is truly a personal choice each of us has to make for ourselves. The thing is that it will not go away and it will progress. I don't know what medicare covers for this treatment. I would find that out. You docs office may be able to tell you that or you can call them. Maybe someone here will know more on that. The drug manufacturers also help in some case. You should go to there websites and get their phone numbers and call them and see if you qualify. Again perhaps someone here will post more info on that scenario. The only true way to determin liver damage is through a biopsy. I would see a hepatologist. Again this is just what I would do or I should say what I did. I'm sure other will chime in with more info. LL