Scared Sh**less

Hello to the group - I've been here many times to observe but this is my first posting.  Im' a 54 yr old male and have had the disease for probably 35 years.
Here's the deal:
Diagnosed - Aug 2002 Hepc 1a
            ALT - 225
            AST - 125
            Viral Load - >18 million
            All other LF tests within noraml range
            Biopsy - HAI score 11 Stage 3 bridging fibrosis    
                     Stage 4 inflammation
March 2006 - ALT 97
             AST 56
             Viral Load - 1.3 million
             All other LF tests remain normal
             Biopsy results pending
OK, there's the stats.  LFT's indicate improvement, but the disease marches on.  My reluctance to get on TX has been as a result of the  fear of the side effects and how that will efect my ability to work.  I supervise 6 others in a very intense telecom environment with a fortune 500 company.  My employer has demonstated that it will replace older workers that have experienced serious health problems.  Typically you go on short term disability first and then long term, never to return.

Dilema - I'm trying have way too many financial obligations to lose my job and health insurance. No one in my company knows of my circumstance.

Obviously I'm waiting for the biopsy results to see how far the disease may have progressed in the last 2 years.  My gasto wants me on TX ASAP to avoid progression to cirrhosis if possible.

I guess I'm seeking comments from others who may have had the same anxieties prior to TX and how you prepared mentally for the 48 week committment.

Thanks

  

[goldyn]

everyone is diff. when i first found out i had hep c 2002 i was stage 1 with very little fibrosis  1,000,000, viral load...3yrs later i was stage 2 with 15,000,0000 1a iwas nervouse to start tx because i have 5 children and teach 2 and 3ryolds about 28 hrs a week but idecided i did not want to progress any further and i felt the dragon was really starting to rear its ugly head so imade the decision to go full force i needed to be around for my family because God gave me handful to raise...i just did shot 16/48 was undetectable at 12wks im still working still running those kids  feeling more tired than normal stomach issues but its worth it to me...everyone has those feelings and almost everyone has to work...with your stats i would give it a shot we have a 50/50 chance of svr and also letting our livers heal a bit while were on the meds good luck to you on your decision and know this is a board full of caring people who will try to help you in any way we can...

            GOD BLESS
                        angie

[cquest]

Yes, the dilema...sucks that you have the progression and I hope you bx is ok...but I understand completely the trauma you're going thru. I too am a 1a w/ high vl but luckily as of last June, no damage. I can only hope that waiting and watching won't be the wrong decision. I can't afford to loose my job or be off my game at work either, no wiggle room...I'm 52 and need the insurance, all that stuff, I think we all do, nobody wants to feel washed up because of this cr*ppy hand we've been dealt...keeping my fingers crossed for you buddy.
Cin

[NYgirl]

First you need to remember that IN HERE there are people who mostly are HAVING the side effects = people that aren't most likely don't even look up any forum or anything cause they don't need the support.

So try and remember to keep that in mind.  It's the people that WERE SCARED before starting treatment that really needed encouragement.  And boy this place is FULL of that!

The treatment of course is different for everybody but it's NOT NEARLY AS BAD as you read about. Now I can't say it's a picnic but I've gone to work every single day for 30 weeks except when the anemia hit me and the Epogen didn't have time to work yet.

There ARE drugs that make tx very doable. Knowing what MIGHT come up helps but you need to remember that many people just never ever have the "flu" side effects that you hear about. In fact I just had the real fever for the first time in 30 weeks. Honestly it was an overnight thing then gone.

As you have pretty advanced damage I would TOTALLY advise starting the treatment. You can manage it with the rescue drugs and really don't even need to THINK about disability yet. There is every chance in the world you will find it completely and totally doable.

And of course if you really didnt well then you could think about stopping if it was that bad. but chances are...you won't need to.

I wish you every luck. Don't be scared - that is the biggest monster of this disease and kills more people than HCV itself.  I know you can overcome it!

[NYgirl]

I have a horrible job that I actually HATE and if I had any real excuse to go out on disability I WOULD. Believe me everybody knows just how much i HATE my boss and if in any way I could I would have reasons to go out and not work...but it's doable Zero it really is.

Just make up your mind that you can do it and you will.

Honest.

[can-do-man]

Hello, welcome to the group. Sounds from your last bx. you should be treating. Unless they read it wrong this one isn't going to be any better. Im stage 4 and that is cirrhosis. Depending on how very intense your job is the longer on tx. the harder it is to work. Make sure your seeing a hepatologist or at least a very good GI whose tx. alot of hep-c patients. Explain your work with him/her and check out all options. Good luck to you.

[jmjm530]

I had very similar pre-tx stats to yours (age 58, 1b, pre-tx viral load 1.5 million) including a stage 3 (bridging fibrosis) biopsy three years prior to treating.

Unless your biopsy shows regression to stage 2 (not likely but we always hope :)) your time and options are starting to run out.

As far as your job, career, etc, the real question to ask is not how it will be affected by treatment, but how it will be affected if you don't treat and your liver gets worse.

That said, it seems the majority people are able to work on treatment, but in many cases in a limited capacity. Some, like myself, were unable to work for the majority of treatment -- and NY Girl's wonderully optimistic attitude aside -- it's not simply a matter of willpower. Fortunately, I went into treatment with my eyes open and arranged my affairs advance for such a contingency.

Hopefully, you will be able to keep working -- but I would strongly suggest you have a back-up plan in case you can't. A lot easier that way then having to scramble around when you're sick.

All the best luck with your biopsy results. Please post the results as soon as you get them and let us know what you decide.

-- Jim

[NYgirl]

You're right...not everybody is able to handle it that well and you certainly handled it magically with ALL that you went through.

I don't want him to think it's any picnic but with his options surely running out = be encouraging.  

The best point I've EVER seen on this board was just made by you it's not how will treatment affect your work but how will NOT treating with advanced liver disease and the things that will follow in time?

I've never really seen it put that plainly and sensibly before.

As always the voice of reason - Jim, Svr, ribaless in a big wide world ;-)

(PS And you ARE SVR. End of story) :)

[can-do-man]

jim said....your time and options are starting to run out.....

LOL, right under my stage 4 post there buddy. Nothin like twisting that knife. Should i tell you when i fall? Maybe you can kick me before i get up?

[can-do-man]

says.....his options surely running out ...... GEEZ What is this? See you CAN kick the CAN MAN furthest. LOL

[can-do-man]

ny ask cando to....PLEASE use your super special voodoo to help ME gain five pounds in the tush......  Can do can and can do will but its a old can man trick hat takes a lot of rubbing to build up those muscles.

[jmjm530]

CDM says  Nothin like twisting that knife.
-------------------------------------------
You're definitely an example where wit and sense of humor is not impaired by liver damage. I think you know what I meant although frankly sometimes it's been harder to write and formulate thoughts post treatment. Do you think it's OK if I take a little riba?

== Jim

[zero limit]

Thanks for the warm welcome!  One thing I like about this place is the support that everyone shares.  Thanks to all who replied to my post.  I think one has to visually see themselves on the TX and convinced that they'll beat this thing in order to get into the proper state of mind.  

Someone asked about my overall state of health.  I feel terrific.  Nothing to complain about.  Plenty of energy and mental stamina.  That's one reason that it's difficult to sign up for the tx.  

I guess unitl now I've been in some state of foolish denial.  Thinking that I would manage to survive in spite of the disease.  Deep down, I know that's a slim chance at this stage of progression.

Again, Thanks for all the great comments and words of encouragement.  I will post again after I get my bx results next week.

zero

[can-do-man]

Hey what you speak is the truth, if i hadn't been so hard headed, And when i say that i mean the one that bobbles around on my shoulders i would have been doing tx 3 years ago. Zero needs to tx. Before he gets to stage 4 he has a better chance of maybe undoing some damage.

[LvdByGod]

time to deal with reality...

[jmjm530]

Scared says: Someone asked about my overall state of health. I feel terrific. Nothing to complain about. Plenty of energy and mental stamina. That's one reason that it's difficult to sign up for the tx.
---------------
The better your health going into treatment, the easier treatment's going to be. You never know what health conditions are around the corner, especially once you hit 50. I'm talking from personal experience. Excellent health right up until two weeks before treatment, and then a bad case of GERD and Prostatitis. Both haunted me through my entire treatment.

-- Jim

[can-do-man]

Hello there, read lots of your post, don't think i've ever had a chance to say howdy. So howdy, You still treating? Not that its any of by business but im just nosey.

You said....time to deal with reality... Do i have to? i've never done that before. Best of luck to you, you have earned it.

[LvdByGod]

zero, it is true, you don't want to go through all that is involved with the results of cirhosis if you can help it. those folks find it next to impossible to work once the disease turns to "decomposition". and hopfully you know that liver disease is "silent" until that happens, so you can't really go on how good you feel today...because when it turns, it hits hard...but before that we show very little if any problems and appear perfectly healthy and fine with little or no symptoms.

i saw my mom die of liver disease and it's so not pretty...no one ever suspected she had it until she landed in the hospital with jaundice and fevor complaining of her back feeling like it was broke...at that point and not before she was diagnosed with liver cancer... appearantly she had cirhosis and liver disease for years before that and didn't feel anything until it was cancerous... sooooo, obviously folks can't wait to treat until they feel like they are sick...

hope you can see zero this is alot more serious than you may be wanting to face right now but you really are making the wisest choice to treat... once you are at the stage 3 bridging point you are at the brink of cirhosis and now is your golden hour to change the path that liver is on... if possible...cirhosis is deep scaring and is very hard to reverse...if at all possible...

i hope this isn't too hard of a post to read... or too scarey to think about but it is the truth. and now is the time to act to change the course of this disease...this is the best thing you can do right now for yourself and your family... the sacarifices really stink but they are better than the consequences of avoiding them...

i pray for you ...that you will be able to work while you treat and to find resolutions if you can not... and mostly that you will clear this horrible virus and that your liver will be safe after that... i pray for you that you will have a long and healthy life from that point on...and all will work out for you to have a great future...you're in my prayers zero...

concerned for you,
sandi

[can-do-man]

This is just a short excerpt from a hepatologist that has been talked about hundreds of times on this board. Some people drive hundreds of miles just to be treated by him.

Patients with cirrhosis are the ones in danger of premature death from HCV. After infection with HCV for

20 years about 20% of patients have cirrhosis. After 50 years of infection, about half of HCV patients have

cirrhosis. About 4% of patients with HCV cirrhosis develop liver failure each year and about 1% develop liver

cancer. Cirrhotic patients therefore have about 95% chance of remaining stable each year.

Sounds better to me then 2 or 3 years.

Once again us people with late stage need to be treated. But to make it sound like once cirrhosis has set in then its over. If i wanted to believe that then it would be stupid to give up a year plus of my life when in a couple years its over anyway.

[LvdByGod]

hi can do man, i have 4 weeks of tx left... today i do my 4th to the end of tx. it's been a long haul and i can barely believe its coming to an end...finally... i wish i would have caught it earlier... easier to get svr and easier to reverse damage once its gone... i'm not very convinced i'll clear though because of the breakthrough and other factors but i have no choice but to try and give it my absolute best... i gotta get rid of this virus or bust...

hey i have'nt read your post below yet and i haven't been around that much but i'm really sorry to hear you are at stage 4... that really is a bummer, but look at new sojourn and mikesimon...you still have hope!!! and i really pray you clear and remain stable, not progressing any further at all... you're in my prayers can do!

[can-do-man]

The one thing i've found thats helped me through this is keeping a sense of humor. And i think you will find that the vast majority of people here do. The few that doesn't might give it a try.

[can-do-man]

My hats off to you and Ina on going as long as you have. You both have earned svr and im sure you both have made it. The best to you going forward.

[sunspot]

zero limit
I have been on short term disability from late November and I work for BellSouth. Do you work for one of the baby bells? If so, we might exchange emails. I’m craft not mgt. Im trying to decide to shoot for long term disability.

[bobbyullc]

it sure sounds like you cannot afford to wait longer. the sides are bad to some of us but not as bad as cirrosis (cirrhosis). cirrosis (cirrhosis) is forever and the sides are for 48 weeks. new drugs will not be here for at least 2-3 years and i do not think you can wait. some of us hold full time jobs on tx. the choice is between maybe loosing a job and probably dying a sad death.
just think of it as killing the disease and it helps. i am in week 30 of 48 and have had some good and bad weeks. just took a 3 mile hike.
good luck and keep comming back,
bobby
let us know when you get your new biopsy.

[slowsouthernstyle]

I treated 3 times and failed all three so even if you do treat it does not mean you will clear and sometimes the treatment is worse than the virus

[dyce]

Welcome, I'm with the others on this , You should start tx because you don't want to jepordize your future. I saw my mother in law die from liver cirrosis (cirrhosis) and it wasn't a pretty sight. You have time to stop the progression and maybe improve your liver and live to be a 100. There is nothing in this world worth letting this virus do any more of it's dirty work.

Dyce

[can-do-man]

Slow, yes you are right our odds are between 40 and 50% of clearing. Yet at later stage we should try. Best of luck to you.


Zero, Like i said before you do need to treat, but i do disagree with some of what i've read here today. Unless some of these people know more then the team of hepatologist that i go to many people live long lives with cirrhosis. I know what teaching hospital i go to, but i take it from a few remarks made some here have better degrees. Maybe they own their own hospital.

That said this is not to be taken lightly and you should give treatment a shot. Just don't go get the ole shovel out quite yet. again good luck going forward.

[can-do-man]

While i agree zero should try the tx. But with your statement...... new drugs will not be here for at least 2-3 years and i do not think you can wait..... Are you saying that us with late 3 and stage 4 will be dead by then?

[OnAPrettyPoison]

Welcome Zero! You are probably figuring out there is no way to tell what treatment will do to you.  I am currently 33/48, 1A, and I am doing fine on treatment.  I found my dread of treatment to be worse than treatment has been.  The virus was undetectible at 12 & 24 weeks! I haven't missed any work other than a few days of vacation I scheduled around my first shot - in case.  I never got fever, but I do have fatigue on one day of my weekend usually, but not always.  I didn't this weekend and have been playing in my back yard today.  

I have a job I have to think on my feet and put in long hours, and I have had very few problems.  My GI said those that can work do better on treatment because they tend not to dwell on the side effects and I have found this to be true.

This is a decision between you and your doctor, just make sure they will prescribe the rescue meds like procrit so you don't have to reduce dosage to keep on the medicines.  My only real hard treatment issue was the anemia which is well in check because of the procrit.

Good luck with your decision!  We will be here for you whatever you decide.

[OnAPrettyPoison]

Welcome Zero! You are probably figuring out there is no way to tell what treatment will do to you.  I am currently 33/48, 1A, and I am doing fine on treatment.  I found my dread of treatment to be worse than treatment has been.  The virus was undetectible at 12 & 24 weeks! I haven't missed any work other than a few days of vacation I scheduled around my first shot - in case.  I never got fever, but I do have fatigue on one day of my weekend usually, but not always.  I didn't this weekend and have been playing in my back yard today.  

I have a job I have to think on my feet and put in long hours, and I have had very few problems.  My GI said those that can work do better on treatment because they tend not to dwell on the side effects and I have found this to be true.

This is a decision between you and your doctor, just make sure they will prescribe the rescue meds like procrit so you don't have to reduce dosage to keep on the medicines.  My only real hard treatment issue was the anemia which is well in check because of the procrit.

Good luck with your decision!  We will be here for you whatever you decide.

[strator]

I wish you the best. I really like what Wasabi Pea said in the paragraph of advice. You shoud list those suggestions out and plan on checking them off. You asked what others did to prepare for tx. I tried to eat better and exercies to build up for it, I'm a 53yro, 1a, 187ml VL, Grade 2, stage 1 to 2. So I took some extra time. I read liver books, joined a support group.That was before I found this place but it was humbling and a wonderful introduction to tx to meet people in person who had tx'd more than once, people who'd had transplants, and others who had been on the fence for as a long as I had.All who also had the same fears about financial and career and family reponsibilities. My doc sent me to a therapist for 6mos to decide if I wasa candidate for anti depressants during tx. Because I'm ia recovering alcoholic/addict I also met people in that group who'd done tx. All of it helped me to prepare mentally and emotionally to better judge when to push through, and more importantly when to ask for help. I eventually accepted that I was dealing with something that I had no control over. It could progress faster or slower. I figured I had a better shot at healing by managing sx if I was able to take help, than at just letting the hep happen to me at it's own will. I don't know how much of the good fortune I've tolerating tx has been helped by all that. But given the choice over I would definitely not tx without training time to work on how I handled life in general.I'm on wk 29/48. I still worry every day whether the anemia will set in or I won't be able to work. I have no idea how I'd support my family.But through preparation I know I have a better chance of getting through it, at least without losing my mind.
Be Well, glad you found your way here.
Don

[Wasabi Pea]

I realize that treating is a personal decision, but honestly, considering your stats, I'd recommend doing it for your own health.  I know a lot of folks get scared off of tx due to fear of extreme side effects.  There's really no way of predicting how someone will react to tx, but there are plenty of people here on the forum that have maintained very busy work and family lives while on tx.

I am three shots away from completion of tx (my second round due to an aborted first attempt -- more due to inaction of doc than anything...which I corrected).  This is going to be the end of two years for me of dealing with tx.  I have a four-hour daily commute, work in a busy courtroom, have work that I have to take home with me, and I am a co-owner of a restaurant/bar which requires my presence on weekends and some week nights.

I have had some side effects and have really wanted to take some serious time off; however, I'm starting to see the wisdom in my nurse's words.  She believes the busier you are, generally the better you are able to deal with tx.  It keeps your mental status from dwelling on the negatives.

But honestly, the very best advice I can give you, is don't necessarily rush into anything.  Just give yourself a month or so and really gather up all the information that you can.  Learn about side effects and what many doctors and patients are opting in order to preempt them and counteract them.  If you decide to treat, get your house in order.  Stock your kitchen with healthy foods.  Enlist the support of your loved ones.  Make sure you have the vitamins you need.  Poke around the forum every day and see what people are talking about.

Had I done this before I began my first attempt at treatment, chances are I would have completed the first go-around and been done.  Educate yourself, and you'll avoid a lot of stress and confusion.  But make you and your health come first.

More importantly, don't tell your work.  Just see how it goes.  I understand that fear, and it's probably very legitimate.  And anyway, ultimately, it's none of their business.

Good luck.  Hope this helps.

[big bloc]

I was scared at first. I have 13 people under me.I know everyone is differnt.Its been 8 weeks in tx an just a few sides .Im am 50 an try to keep up with them.I think you can to

[mikesimon]

Don, I think your post was one of the best I've read here. It was incedibly honest and moving and I believe that anyone reading it will be positively impacted. I wish you the very best. Thank you. Mike

[Snakum]

Just wanted to weigh in ...

I'm probably among the most skeptical here concerning the cost-benefit/need for Interferon and Ribavirin treatment.  And I know that if I were treating and the side-effects hit me as hard as it has some who post here ... I definitely WOULD BE unemployed.

However, if my biopsy comes back with Stage 4 cirrhosis, even I would bite the bullet and begin treatment.  My life, and being able to be here for my kids, and grandkids (one day :o) is more important than ANY job, to me.  Everyone has to make their own decision, taking into account what's best for them.  But Stage 4 ... I'll treat, and I'll find a job somewhere else that I can do in oder to continue insurance/treatment, if that's what it comes to.

I hope I don't have to make that decision.

[GoofyDad]

I look at it like this. Since starting grade school, HCV is the singular thing at which I've been able to progress faster than the crowd. For that I should hold my head high.

Can-man, we ain't going anywhere soon. Folks should be that lucky. I'm not sure where you are in your stage 4 status (possibly a bit further than me?), but in any case if we can stop the assaults on our livers, I think the outlooks are quite good. And with support drugs, maturing tx protocols, and new drug trials, our chances are better today than ever.

My Doc showed up 40 mins late for my appointment. I asked "So what am I, chopped liver?" Solemly, he says, "Thats something we need to talk about, Goof".