how do you do it

[Mary4now]

I'm wondering how you all get the help you need to treat hcv, do you all have insurance, are there programs that help the uninsured?  How do you carry on, although I know there isn't much of a choice, if you could forward some of your insite. I'm newly dx, but probably had it for 30 odd years, and I am still freaking.  I'm noticing all the things I attributed to just another day as symptoms of the infection.  I havent drank much in 20 odd years.  Once in a blue moon wine, (no more), pretty healthy diet, meditate, walk the dog.  These are all good things right, which I am going to boost.  Feeling blue most of the time.  Gawd I'm freaking, cuz I dont know whats in store, take it day by day.  M

[wyntre9]

I do good countdown.  It was the way I survived almost 20 years in the classroom.  On the first day of work, you got out the calendar and did a reverse days-left-in-the-school-year count.

Then, on the bad days, and ther3e were almost as many of those, percentage wise, as there are on TX, you could say to yourself, 'well, i only got 125, or 88 or 53 more to gobefore summer break."

I learned this coping method from a Physical Education teacher who taught 100+ kids per class and who was trying to make it to the magic 25 year deadline.

It has always stood me in good stead but TTTT, it was easier in the classroom and I NEVER thought I would say that.  :)

wyn

PS - In times of desperation i used to calculate the number of seconds, too.  Who says there's nothing worse than TX?

[Bill1954]

Jim- thanks for the good words. I wasn’t aware of the gender disparity you mentioned, but thanks for bringing that to my attention. Interesting analogy regarding the alimony :o).

The specimen results from HCV Fibrosure that I mentioned above were drawn during treatment. I realize that Labcorp states this test is not designed for patients in combo therapy, however I double-checked with the NP at my clinic, and she didn’t feel that it would compromise results, based on my normal (ok, low normal Hgb profile). Apparently, gross hemolysis is cause for test rejection, and may affect haptoglobin levels, one of the primary serum markers used to analyze fibrosis. I need to have these results reviewed by Hepatology, but I’m not surprised; this seems to reflect the natural history of this disease. If you remember, I was late stage three per biopsy in early 2005; in light of recent reports from the Boston meeting (HALT-C in particular), this all makes sense. I *was* hoping for some improvement in histology over the last 124 weeks of treatment, however :o). Again, I scored 0.86 in fibrosis, and (thankfully) 0.39 in necroinflammatory activity.

Here is a technical overview of the HCV Fibrosure test for those that are interested:

http://www.labcorp.com/pdf/08_HCV_Fibrosure_TR_1080.pdf

Really good to hear from you, Jim- I wish you all the best for ’08—

Bill

Wyntre;

LOL, one month = four weeks= 28 days= 672 hours= 40, 320 minutes… I think we *all* put our own spin on this stuff, huh? Believe me; I’ve worked it every way possible! Too funny!

Thanks Wyn- Take good care, and I’ll be watching for your progress from time to time.

Be well,

Bill  

[Bill1954]

Mr. Billy;

Thanks for the good words; I wish you the same. I applied for and was amazed to receive SSI during my first treatment effort. It was approved for a variety of reasons; HCV, degree of liver damage, insulin dependent diabetes, and long-standing issues with depression and anxiety.

As a 53-year old carpenter, this might have been a blessing in disguise :o). Know what I mean? If I had had a non-physical, low stress job, I would have continued working. As it was, I could barely make it until noon on the job site; I was working out of state for years, and falling asleep in the truck after lunch just wasn’t working very well.

As I understand it, SSI can be very difficult to receive based solely on a diagnosis of HCV alone. However, if you’re having difficulty with work, and don’t have any other options to exercise, it is probably prudent to apply and get the clock ticking. Sure can’t hurt, eh?

Good luck to you, I wish you nothing but the best in your travels. Take good care,

Bill

[wyntre9]

Bill,

WOW!    CONGRATS in advance.  1 more month!  (Somehow that sounds better than 4 more weeks, at least to me.  Still 4 weeks sounds a lot better than 16.  On the other hand, 1 TX sounds better than . . . . )

Have you thought at all about tapering off treatment?  There'a a post about that on this page.

I know what you mean about getting the post-TX jitters in advance, not to mention the not wanting to repeat this process ever again.

All the best for success and SVR in '08.  

WD,

There have been a number of people on forum who have gone on FLMA, DB, or medical leave of absence because they couldn't function at work while on the meds.  I am one of them.

wyn

ps - don't know if you ever got my message but I still haven't been able to locate those condor pics!  Doya have the link?

[jmjm530]

That's a really good heads-up to Mary, regarding making sure she gets a confirming viral load test. Actually, a multi-study retrospective analysis shows that on average, 40% of women clear the virus naturally. Closer to 20% with men. Unfair really, sort of like alimony has been. Hope this finds you well Bill in your own treatment. Happy New Year!

-- Jim

[working dog]

bill it's good to see you getting close to the end of tx again..of course we all hope that goes well...i was just talking with someone about you the other day..didn't you go on dissability so you could tx? sometimes i think about that for myself as well as folks that may not be able to tx otherwise... and mary...am i missing something i don't see any mention of a biopsy yet..or what geno type stage grade all the stuff to find out early ....billy

[Bill1954]

I think you'll find that the Patient Assistance Programs (PAP's) are quite generous. They're designed to accomodate the working middle class, and not just the indigent population. They also gear toward underinsured, not just uninsured.

Hopefully you won't require treatment, but if you do, these can literally be life savers.

Best to you,

Bill

[Bill1954]

Hi Wyntre,

Congrats on the graceful wind-down, by the way. An old veteran like yourself can handle the last 16 weeks standing on your head, eh?

I’m currently in week 68/72, so I’m not to far from completion now.
For the most part, this treatment period has been smooth and uneventful, with few side effects. I did get quite sick for a few days earlier this week, though, so I can’t say I got through unscathed!

I recently received results from a Fibrosure test that were disappointing; I scored 0.86 (> 0.75 = cirrhosis), so I’m certainly motivated to ensure this time does the trick. I’ll meet with two hepatologists prior to completion of Tx for last minute consults, and see if they want to further extend or modify my current treatment efforts.

I’m already getting the jitters about stopping the meds; once bitten and all :o). Oh, well, we have to call it quits sometime, however I would certainly rather not have to repeat this process if it’s not absolutely necessary.

How are you holding up lately? I haven’t been keeping in touch here much recently, I hope your doing well. Keep your chin up, I wish you nothing but the best.

Take care,

Bill

[Mary4now]

WOW ,  I think I would qualify for some assistance ( I hope if needed )  I know I am probably getting ahead of myself, but I do that.  So, OK< one thing at a time.  just freakin a little.   M

[wyntre9]

The more info the merrier!  :)

And, for a person like me, who is slightly slow and requires repetition to get the point, ya can't say some things too many times.

Happy New Year, Bill.

And the countdown is on.  I have 16 more weeks.  You must be down to single digits, no?

wyn

[Bill1954]

Our posts crossed :o).

[Bill1954]

Hi Mary,

I took a moment to read your profile, and you mentioned that you had received a positive HCV antibody result. Has your doctor ordered the requisite follow up tests to confirm if you are HCV RNA positive? If not, then you are getting ahead of the game. Approximately 20% of patients that contract HCV will clear the virus on there own, without the need for treatment. Until you test positive for HCV RNA, you don’t have anything to worry about. Even then, depending on other factors, it still might not be in your best interest to undergo treatment. One thing at a time :o).

Health insurance is indeed a wonderful thing to have if it is determined that treatment is advisable. While the cost of treatment varies, $40-100,000 U.S. / eleven-month period will give you an idea to start with.

The current FDA approved meds for HCV treatment are relatively expensive, but the cost of interferon and ribavirin can be partially or wholly offset by patient assistance programs. These programs are offered by the various pharmacy companies, and are based on a number of factors including a patient’s income.

If the need arises, you can call these numbers for more info regarding financial assistance.

Schering Plough, the manufactures of PEG-Intron have the Commitment to Care program: 1(800) 521-7157

Roche Pharmaceuticals, the manufactures of Pegasys, provides assistance through Pegassist: (1-877-734-2797).

Good luck and take care,

Bill

[Mary4now]

Thank you people, I feel better all ready,
I haven't even seen the GI yet/ I like so many others it seems found out from a random blood test.  I had a bout with hep 35 yrs. ago, but they said it was A ( I thought) now I know they didn't even know about C.   Dang,  I got all your info on vit's and I'm off the health food store,  Support is so important, just to know someone cares to help.  I'd like to do more of that myself, maybe I could massage Heppies?  Thx, M

[wyntre9]

In the event your Dr. recommends treating, I know from many other posters I've read over the past year that there are several programs available to help uninsured people get the meds they need..

One is Pegassist;  1-800-387-1258.

The other is Commitment to Care:  1-800-521-7157.

wyn

[cottoncandy99]

the first time I was on tx I had my dr get the meds for free for me from Priority Healthcare which came out of Florida but I also know that if you don't have insurance that is another company in Kentucky that also will give you the meds for free.  I don't know the name for sure but iif you contact the Schering company they maybe able to assit you further as well as your dr office.
cottoncandy

[Nomadpixie]

Mary try not to freak, take control, 30 years this virus had a hold on you its your turn to show whose boss.....You gotta embrace the meds that will help you get rid of this squatter.....

Most sides from tx can be helped with something..try and remember to take your pills each day with food...Halfway thu a meal stop take your pills.....it will help prevent Nausea and heartburn....Support is the key word to getting thru this....Keep talking about how you are feeling, it will help....

What geno type are you..?.....Px