terrified by finacial impact of treatment

[wyntre9]

I'd be very grateful for advice, comments, shared stories, etc.
     Here's my situation; Stage 1, genotype i - pegasys/ribavarin treatment recommended.  Scheduled to start either December 22 or December 29.  Main dilemma is impact of treatment on work.
     Music teacher in slums.  100 to 200 kids per day.  Job is grueling, draining - I can barely make it to work five days a week as it is .  I have severe allergies - take monthly shots - always sick 'coz the kids are always sick - working with ages 5 to 12.  
     (The worst part of the job is the other adults.)
     I have to do three more years for lifetime health benefits so I force myself to keep going even though I'm living in a place I can't stand working in a job I hate.  In other words, I'm trapped.  It's hard enough to justify existence without the added burden of hep c treatment side effects.  (I'm not proud of my attitude, just being real.)  I've deluded myself life will be brighter once I can get out of teaching, three years from now and I can move out of state.
     In the meantime, although I have short and longterm disability insurance, there's a thirty day waiting period and I'm not sure my diagnosis will qualify me.  (Yes, I'm anticipating I'll need the time because, as I mentioned, I can barely drag myself to work now.)
     I was thinking of postponing treatment until the summer, when I won't have the stress of working every day but my doctor has strongly urged me to start ASAP and continue for 48 weeks.  
     I live paycheck to paycheck, like everyone else.  Any suggestions?

[ladybug52]

Congratulations on your decision to start right away. I just sarted 2 weeks ago an Friday will be my 3rd shot. Let me know how your sides and symptoms affect you. I have openly admitted that I'm more sensitive and more paranoid on these meds. Hope you don't feel like that especially working with a bunch of teachers and all the politics that go on.
Take care, I'll be thinking of you on Friday.
Bug

[Kalio1]

the "new treatments" referred to is usually VX950 a treatment that is in trials now trying to acheive FDA approval. It will be years before it is available and we DO NOT know if it will be approved, what side effects it will carry or even if it will work to bring patients to SVR. All that info isn't out yet.

Keep in mind the "new treatments" people refer to will be taken WITH THE CURRENT STANDARD TREAMENT WE TAKE NOW, it is not an "alternative" to current treatments but an addition to current treatments to help improve the odds of success.

It might be that the "new treatments" will allow people to take the drugs for a shorter length of time, at least that is the hope, but we do not know if that will happen OR when they will be available.

Even the people making the drugs say it will be 3-5 years before they are available to the public IF it turns out they actually work.
They look "promising" but there have been many many treatments that looked "promising" in the past that didn't pan out.

[wyntre9]

thanks for the clarification.
and thanks to all for tolerating my freak out.
i am going to start shots this friday and will be checking in with updates on my treatment.
I've contacted a county union rep who is going to assist me should I find I can't work because of med side effects.
knowing I have some legal recourse and representation has taken a load off my mind.
She reiterated the FLMA option suggested by one of the posters.
you guys are so smart:)
Having taken the first and most difficult step, acceptance of the hep-c condition, I'm almost ready to take the plunge.
Maybe it won't be as bad as I anticipated and if it is, guess I'll do the hep-c countdown; 48 weeks, 336 days, 8,264 hours, 495,840 minutes, 29,750,400 seconds to go after 12/22. :)
wyntre

[Cindy10]

Thanks Kalio, I hope you have a great holiday as well!

[sass_blue]

Hi Mauilady..just wanted to say good luck with tx in Jan..and Kalio..once again I agree with you, I am geno 1, stage 1 and opted for tx.

[wyntre9]

More good advice - thanks again.
HCA mentioned the "new treatments" that will be available in the next year or so.  Does anyone know what she's referring to and where I can find out more?
I've certainly got lots more ammo to present to my doctor.  I'm going to write him a letter outlining my concerns.
The consnesuss from this forum seems to be to start ASAP both because A)a positive response is more likely the earlier the disease is detected and B)no one knows how fast the disease will progress.
After reading everyone's input, I've almost decided to start treatment this coming Friday as I'll have ten days off and 2 shots under my belt before school resumes.
If I have a bad reaction, I guess I could go off the shots and start up again either after Spring Break or during the summer.
To the teacher who suggested a change of district, it's a huge financial issue.  In my state, once you get to top salary (which takes an average of 15 to 20 years), if you change districts it's often at a huge drop in pay - one years credit for every two years of service is common.  For obvious reasons, I can't afford to do that.
Wouldn't it be nice to be independently wealthy and not have to worry about money issues with reagards to one's health?
By all the support and empathy in your messages I know most of you understand my dilemma perfectly.
Anyway, thanks to all for helping me sort out my feelings and options.  I'm so glad to have found someplace to talk about them.  While I wouldn't wish bad health on my worst enemy, and I wish no one in this forum was having to deal with hep c, it's still true that advice from those who have 'been there, done that" or are in the process of discovery is invaluable.  There's really no one I can talk to who truly understands, including my doctor.  They haven't walked in these shoes.
Happy winter,
wyntre

[cougareyes]

You definitely have to be in the right place to treat, it isn't easy. I'm 6 month post svr treated for 11 months and am now financially ruined. I had HCV for 25 before tx, so my question would be why so urgent now. I would stuggle through the next 3 yrs, the tx could endanger your current employment also. The cost of tx is much more than financial.  Peace

[Htownwife]

I'm not personally treating, but my husband is. He was fortunate to get into a trial program, so all the med's are free. I don't know about your insurance, but our insurance would have covered only 50% of the cost.
There're several programs that I've read other posts on which help with the cost of the med's. One is called Commitment to Care program, and the number is 1 800 521 7157. Maybe somebody else will post with info that might help you with the cost.
Good luck!!

[susan400]

This is just a thought, and certainly not a medical advice type of thing because I'm not your doctor..., but, if I were in your shoes and needing to do the work that you do, I'd ask my doctor about waiting to start until the first part of June.  I'd also ask him about participating in one of the studies that will be available to more people in 2007.  Then, you might be able to get on one of the drug studies w/a Protease inhibitor or Polymerase Inhibitor included in the Hep C regimen and increase your chances of a viral clearance.  Also, some of the drug studies, if I'm not mistaken, cover the cost of the study meds. Which, if it did, would save you some money.  By having the study drugs, you also might be able to treat with the Interferon for a less period of time, and be done with the whole thing sooner.  This is all if you'd be a candidate w/your doctor's approval and the drug company/ and/or study group.  It's worth looking into.  Reminding you, of course, that I'm not telling you what to do.  It's just an option to look at.  I feel that I've treated enough times to feel like I'm not offering this up as a novice.  Best of well wishes to you.  Susan

[Myown]

Sorry to hear of your situation. Have you considered putting in for FMLA? That would tack on 12 weeks to your summer vacation or what other time you can get.

hope things work out soon.

[Kalio1]

Jut wanted to say I am so glad you are feeling better and the tx isn't as dificult now.

It seems to vary person to person, regardless of any factors, age, damage, etc. SOme do fine, some not so fine and some it's very hard, some so hard they have to stop. Definately a wide spectrum of reactions.

hope you have a nice holiday season!

[ladybug52]

I understand your fear of financial ruin. I put off tx twice because I wanted to work as much as possible before tx. Also I changed jobs twice and didn't want to start a new job on tx.
Maybe your dr. is in a hurry because he's looking at the general state of your health and he feels the hep c could be inmpacting it negatively. Are you enrolled in short term disability? I signed up at open enrollment this year just in case. That's sad that your jobis so draining. I don't think I would be too motivated to drag myself to work sick to a job I didn't like. Will your dr signoff for STD if you ask him to? Your options are to find a different job in the district, find a dr who communicates better or wait for tx till the time is right. Good Luck with your decision.

[sfbaygirl]

In CA teachers don't get state disability. I didn't find this out until it was too late. I tried to pay privately and they turned me down because of the Hep C dx. So I can't get any state disability, and I don't pay into SS either. I did 10 years ago, so not sure how it will work out if I retired sometime. I just got a letter on my birthday offering me a five thousand to retire (they want to get rid of expensive teachers) and of course about 600 a month. If I wait I can get about 900 a month at 62. Or if I work more teaching, a lot more. Tempted to get out of teaching, they just don't know how to treat us, especially the admin and parents. The money isn't worth the amt of work we do either. anyway, now you've got me started on a rant! BTW Wyn, you can always get Cobra for awhile if you decide you can't work.

[mauilady]

Ditto on the stage 1; treatment at this point shouldn't be crucial.  Main thing is: don't drink any alcohol (that can't be stressed enough!), get lots of exercise (that's also great for your mental well-being), and eat right.  Take milk thistle (standardized), anti-oxidants, avoid iron supplements and fats, eat lots of whole grains, fruits and veggies and go lightly on red meats...

I'm geno 1b, and was hoping to be at stage 1; turns out I'm 2-3 so will start tx on Jan.5th.

[Cindy10]

I can't speak for everyone else but for me the tx was tough the first month. Getting adjusted to meds and bloods count dropped quite a bit. However after the first 4 or 5 weeks my blood counts starting going back up and then leveled off and I think I got used to the meds cause I feel pretty good now. So my  point is if you could start during the summer when you have a couple months off, I think that would be better. You would have time to get adjusted before going back. You would be glad you did it that way. Talk to your doc and explain you situation and thought process and see what he says. Best of luck to you!

[Kalio1]

Im not suprised at all the doc recommends you start treating right away. As damage increases, your chance of the treatment working decreases. Many doctors recommomend treating regardless of damage level. Being hep c positive puts you at a much greater risk for other diseases and illnesses and can cause a variety of health problems, hepc is is not just a "liver disease"

Id arrange your life as best you can to accomodate treating but I would treat as soon as you can manage to.

[friole]

I can really feel the stress in your writing.  I am really surprised your doctor is insisting on your treating with a 1/1 liver.  Treatment is supposed to be easier the younger you are, but it really sounds like this job and treatment would not be a good mix.  I too think you need another consult.  You didn't say if you were symtomatic.  Are you?

You should probably check with your insurancae company and see what exactly they will pay for.  If your white blood cells (the neutrophils) or red blood cell counts drop, you will need a couple of other pricey drugs too.  Even with copays the cost adds up.I had excellent insurance and the treatment cost me about $5000 in a year.  But the unreduced retail cost of that treatment before insurance discounts was about $85,000.

You could probably wait the 3 years until you are retired to treat.  That might be my plan if I were you.  Best of luck to you in your decision
frijole

[Kalio1]

I agree with the others that say you can wait until the summer unless you are having symptoms and that is the reason he wants you to start now.

That is good you have minimal damage, sorry your job is so horrible.

[sass_blue]

I agree that you need to speak to you doc more about why they are pushing for treatment.  I am geno 1 stage 1 and was told I could wait.  I decided to opt for treatment now but thats because my situation allows me too.  I was also experiencing symptoms of the virus which were making working full time difficult and was frightened of getting further fibrosis.  I started part time work when I started tx but now I am not working at all because of the sx.  I also have 4 kids at home.  I am 8 weeks into tx and I must say that this close to xmas it has been a financial strain without me working.  My partner earns reasonable money but with 3 teens there never seems to be enough!!  Starting tx in the holidays sounds reasonable, although 48 weeks of tx wont get done in the holidays...i was told that the sx are worse in the first few weeks....I feel its getting harder as time goes on..although everyone is different...good luck with whatever decision you make

[Htownwife]

Under the circumstances where your doctor is not a good communicator, I think it would be wise to go for a second opinion. You're at stage 1 with minimal fibrosis, so it sounds like you have time on your side, unless the doctor has another reason for you to start right away. At the very least it would be good for you to begin treatment towards the end of the year, (April or May?) and then you'd have all summer to acclimate to your treatment.
Too bad you don't trust your principal; it's good you're getting legal advice in that case. Is there any other teacher who you can confide in? It's hard to go this alone if you don't have to. Hard, but not impossible.

[wyntre9]

Thanks very much to all for your response.  Just expressing my fears and reading your kind words made me feel better.
Thanks also for the warnings about side effects.  I really need to know the truth.  I realize everyone responds differently to treatment but my immune system is already shot so I can't imagine I'd be lucky enough not to have problems.
My doctor isn't the most expressive guy.  Although he's one of the 100 top doctors in my state and I was completely satisfied with his skill in performing the endoscopy and his referral for me to get same day biopsy, it's not easy for me to speak with him.
I had a two hour training and information session yesterday with the pharmacy he recommended to provide the pegasys and ribvarin.  The pharmacist also urged me to start treatment ASAP.
I'm so cynical that of course I started thinking maybe it's all a kickback scheme, like hiring practices in urban public schools.  
To the teacher, I appreciate your understanding.  There's really no other school in the district I could survive in.  I'm at the point where I refuse to work with kids taller than me and that includes almost everyone over age ten or eleven.  I haven't spoken to my principal.  I don't trust him.  It's very political here as it is in all school systems.  I'm trying to contact the  union Uniserve rep to discuss legal issues, my rights, etc.  It's my understanding that I'm not required to tell my employer (the school district, human resource people, principal, co-workers) about the hep c diagnosis.  My intuition says the less they know the better.
As you all could tell, I'm completely stressed by the situation.   Thanks for pointing out that waiting a couple of months shouldn't make that much difference.
btw - I'm 52 and my viral count is 1,140,000.   The liver biopsy results were mild chronic hepatitis c, grade 1 with minimal stage 1 portal fibrosis.
Does anyone think I should go for a second opinion?
Again, thanks for taking the time to share your views.  It helps.

[Moniker]

I did 48 weeks treatment. I would not have been able to work at the sort of job you describe while I was on treatment. Explain your situation to your doc, and ask again, why the rush?

[chcnme]

Hi wyn.  Sorry to hear your having a rough time with the Hep and tx decision  (and having to juggle the work and benefits in there,too).  That's a tough one. I bet your job is grueling and oh so tiring and that you just hate it at times (most times.)  But I still have to say - I so admire you for doing it.  I hope one day you'll be where you want to be and out of the slums and that you'll look back and know that you helped some kids whose lives you may have changed forever.

I ditto what HCA and the others have said.  Let us know more what's going on.  It would seem (with the very little damage right now) you have some playing room and could wait, but even if the doc did OK you to wait a while, it looks like you're saying that your health benefits would have to be considered into your decision.  I wish you the best with this.  Hang in there!

[Htownwife]

I really feel for you in your situation. I'm a teacher too, and it is a very demanding job both physically and mentally. I've taught in a school like yours sounds like (slum, hard to manage kids) and that's hard even when you're in the best of shape!! IF you decide to postpone treatment, or even if you decide not to postpone and treat this month, is there any possibility you can move to another school to help your mental outlook? I finally resigned from my job and began teaching in another district...and what a difference it made! I just hate to see you stuck where you are in a job you hate, and treating at the same time.
If you do decide to stay at your current school and treat at the same time, you need to put yourself first. That's easier said than done. Does your principal know what's going on with you?