I'm just plain scared...

[amommy]

Well, first off, I apologize for taking up a thread with this vent.  I just don't know how to process all I am thinking about and you guys are all so insightful and helpful.  Please feel free to post other topics on this thread...

I don't even know where to begin.  I am scared.  I have shared little parts of my story, but to recap, I am hep c positive.  I found out I had the antibodies in 1995, and thought that I just had the antibodies.  Eventually it came to light in 2001 when I asked to be retested that I in fact have the active virus.

Still, at that time, I was told it really is up to me whether to treat or not, my liver enzymes have always been normal etc.  My hubby and I decided to wait it out, start our family (given the less than 5% chance of it being passed on to a baby) and go from there.  Well, sadly, it was passed on to my darling dear daughter, but thus far she seems fine.  I could post a whole other post about my worries for her, but this post is going to be about me.

My GI told me basically that I only need to come back when I am ready to treat.  I have not been back.  I am too scared.  I feel like I have increasing sxs, and I am so afraid of what I am going to find out.  How is this logical?  I cannot explain this.  I am afraid to treat, I am afraid not to treat.  I am petrified of the long term effects of the treatment, and just as petrified of taking a chance with this disease.  Every ache and pain, I feel like OH NO, that must be my liver getting worse.  All these symptoms, the RA type stuff, the GI issues, I feel like I have all of them...

[sunspot]

Quote snip by artgal.
In fact at times it's a bit hard because I don't act or look sick so I don't always get the extra consideration that at times I want....
----------------------------------------------------------------
Here is a poem I copied from another Hep site. I keep a copy on my cubical wall at work.


If It Don't Show Today


I have had quite a few people
come up to me and say
why you're looking pretty good
you don't seem sick today

Well, have you ever lived wondering if
each day will be your last
not knowing if there's a tomorrow and
reliving and regreting your past

Have you ever fought daily just
to get out of your bed
had a foggy grey cloud hanging always
over your head

Have you ever lost 80lbs or
had your hair all fall out
wasted away in a chair
with no one about

Oh I have my good days too
when I don't let it show
and some see me those days only
so they don't really know

So all you nonheppers out there who
haven't ever felt this way
don't ask are you really sick if
I don't show it today....


J.W. Cutrer
aka SirJohn

[artgal]

I just wanted to give you a bit of reassurance. I too was extremely worried about doing treatment, how it would affect my ability to work, take care of my family and home. From all one reads, you might think you won't be able to get out of bed. But this has not been the case for me and I'm 14/24. I've probably taken a nap twice in the 14 weeks. (I actually want to be extra tired so I won't have sleeping issues as this is a problem for some on tx.) I have definitely had my share of sides but they really (with the exception of the anemia which is easily treatable for most) have not impacted on my ability to carry on with life. I still teach classes, design jewelry and sell at shows and most importantly I have been able to really be there for my children. (They are 10 and 13.) In fact at times it's a bit hard because I don't act or look sick so I don't always get the extra consideration that at times I want.... I don't always do the physical stuff (hiking mountains) and I will sometimes stay at home instead of go out to an evening event and they will go with their dad. My husband has been extremely supportive although he was initially against my beginning tx. I think for family members it is especially scary as the tx has so many unknowns and change is often hard for those closest to us to embrace. But now that he has seen I most likely will not become suicidal (those warnings are very frightening) he is the one to say "you can do it" when I'm ready to give up. If possible, have your husband attend the appointments -- it is just so hard to retain everything one hears in those meetings. I'll share more in future posts -- for now -- just know, if you do choose to do tx it is doable. Let us know as you move forward how you are doing whether or not you choose tx. Best to you.

[friole]

I have just found the most wonderful article on hep c  called Women's Issues with Hepatitis C - Side Effect Management.

http://liverdisease.com/womenhcv.html

It discusses so many things that we have been discussing in previous threads - amongst the topics - hair loss, estrogen replacement, osteoporosis, dental problems, dry skin.

One little tip I picked up from the article was the teeth issue - Interferon reduces the amount of saliva in the mouth. Saliva is antibacterial.  THe article suggested chewing sugarless gum and drinking fluids constantly to increase saliva.

[HepCinLA]

amommy:  Thank you so much for openinging this thread.  It certainly has been a worthwhile discussion.

friole & artgal:  thank you for your posts.  I've been sitting here  feeling anxious as I tick off the days before I start treatment.  Your posts have been inspiring that treatment & family life can co-exist.  Friole - you took the words right out of my mouth about  putting life on hold while you do treatment.  I really thought I'd spend a whole year in bed unable to engage or participate.  It's amazing that you not only take care of your grandchildren but are able to work as well.
Artgal:  The fact that you are able to do so much during treatment is awesome.  Your post has given me a lot to think about as I try to get behind the medicine and think positively instead of dreading treatment and having a negative outlook.

Please keep us all informed on your progress.  

[landfill]

Tx will be 24 weeks of being tired, achy and cranky.  Then you'll get back to normal, the hepc will probably be gone, and you can forget about it.  Your chances of beating it diminish as you get older and your liver gets worse.  I'd say go for it.

[amommy]

Thank you Thank you Thank you!  I cannot possibly express my gratitude for your kind and thoughtful responses to this thread.  I will attempt to get these fingers to dial the phone for an appt. tomorrow.  Knowing I can come here to vent and for support really does make it all seem possible.  I look forward to spending A LOT more time on here with you all!
Sending best wishes for health and happiness for all of us!

[friole]

This is an excellent thread.  Ammomy -I encourage getting the biopsy too.  As Scott said, your reactions and feeling are so totally normal.  I cannot really add much to what has been said, but I will say that this fear and anxiety (and I had all the feelings and thoughts you are going through), at least for me, ended the day I made the decision to treat.  My first shot was two days after I made the decision, so the fear of the shot itself was over soon too.  It has been said by many great people that the only thing we have to fear is fear itself - or the fear of the unknown.

I don't have small kids but pick up my 2 grandkids (ages 4 & 5) from the daycare twice a week.  We are teaching the 5 year old to ride a bicycle on weekends.  There were a lot of days over the past year (before dx) that I really just wanted to plop on the couch after work, not engage with small fry.  I have had 3 shots (3/48).  I have been lucky to have no side effects so far -- in fact, the two days after the shot I have a remarkable amount of energy.  I love to be around the grandkids, and so far, have not been tired at all when they are at my house.  This Friday will be interesting because it is my shot evening and I will have the kids.  I think it will work out fine - I will just lock myself in the bathroom for 20 minutes and they won't even know.

I guess what I am trying to say, is that I am beginning to think I might be able to have a normal life after all for the next year. I had thought I would have to put life on hold while I did tx.  Now I may get hit with a freight train of sx here in the future, but for now, all is good.  So my heart goes out to all of you trying to make the decision that I just made a month ago.And remember, you just might not have the awful sx we have all read about.
Kathy

[Gabbe]

I also had a baby even thought I knew I had Hep C.  I haven't test my daughter and she is already 4 yrs old.  How old was your daughter when she was tested?  Everyday I try not to think about this but sometimes it's hard not to.  I totally undersatnd what you are going through, I was also very reluctant to be treated but now I am glad I did it.  I just had my 1 yr. post treatment test and it was negative!  I was a 1b and now I totally feel that it was worth going through a year of injections and moodinest.  I concider myself to be very lucky because I had very few side effects but I believe that keeping yourself busy and doing things that you like as much as you can, can make a difference on how you do on treatment.  My prays are with you and your family.

Gabbe

[Forseegood]

just wanted to say thanks for your post, I always like to hear positive treatment stories, and yeah, I would sure like to turn in this fatigue and brain fog. I have spoken to some who actually feel better - once the initial "getting your body used to the meds" phase is over. At least in terms of the fatigue. It's great that you can still live your life the way you do. And with kids to boot! With your positive attitude I'm sure you'll get through it okay, please keep us posted.

[Pixie Dust]

Find yourself a good hepatologist or gastro doc.  Make your own appointment if you have to.  Talk with him and bring your hubby to the appointments if you can.  ( I had to make my own appointment.  And my hep doc was outraged that my PCP didn't even do a VL and told me there was nothing to worry about the test showed only a past infection. I have current infection and go to my hep doc this week to talk about treatment)  My alt is the only number that is ever high and its only a 46 normal is 40 and I have stage 2 damage to my liver.
The bx of your liver seems to be the most important test and its really not bad.  
It may be in your head.  Or it may not. At least you can make a plan.  Hep c is a little different for everyone.

[Forseegood]

Hi amomy, I for one, can totally relate to you. I think in my case, going into menopause  has just made me a bit crazy w/ anxiety, seems like I can't handle stress very well anymore, like my adrenal system is off kilter. Of course the hep is not helping. But before last summer, when I handn't entered menopause, I was a lot more level headed and could handle stress better, didn't have the mood swings before that either. Which means the advent of taking tx is really, really scary for me. I just tell myself the same thing you hear, well, if it is too hard to bear, I could just stop.

But I don't want to hang on to that too much either, because going in I do have to know that it "might" be the hardest thing I'll ever do in my life. And if it isn't I'll be pleasantly surprised, heard that happened to a few people. I'm trying to make a deal with myself to just know that and go ahead and do it. Califia once told me that she just feels she has the "capacity to endure."  I hang on to that too. You just endure it, , and you address what you need to address as it comes up, and time will eventually pass, and maybe I'll have had a chance to beat this thing in the end. Strangely, my gut feeling tells me that if I do the tx, I will clear.  

As hard as it may seem to have to do it when you have kids, sometimes I think you parents are a little better off in some ways, than us child-free folk, in terms of taking tx. To my mind.

I'm sure they will be little stinkers about it sometimes, they are kids afterall, but you get that constant support of these little ones looking up at you with love in their hearts, etc. You have the added incentive of doing this for their sakes as well. That I think would be a really strong incentive, an incentive that I don't have. But really, I am just like you, sometimes I just can't believe that this has happened to me, it's so surreal -  and I was diagnosed in 01. I find myself oten going into denial about doing this tx, like it's going to happen to somebody else, then I remember it's me and I bum right out. Haven't done talk therapy in awhile, I think I'm going to make an appointment this week. I just want to get on a little better footing about all this stuff. Good luck to you though, here's to smooth sailing and a steady landing. Maybe we'll both be pleasantly surprised, it could happen!

[STUSEE]

HEY BEST ADVISE GO TO QUALIFIED HEP C DOCTOR. YOU MUST HAVE A BIOPSY TO DERTERMINE DAMAGE. AFTER YOU GET RESULTS CONSULT WITH YOUR DOCTOR ABOUT OPTIONS. IM HEP C POSITIVE FOR 40 YEARS WITH MINIMAL TO STAGE 1 FIBROSIS. ITS OK TO BE SCARED BUT DONT LET IT STOP YOU.

[Laika]

One thing I don't believe anyone addressed is your comment that you want to have more children.  I would treat before I did that.

I empathize with your anxiety over treatment.  The fear mostly comes from not having enough info to make a good decision.  Once you have your biopsy results, it will be easier to decide.  I agree with hepCinLA with the notion that "it is never a good time to treat".  In the end, you just have to do it and not wait for things to be convenient.  If you have insurance that will pay it and have stage 2 or more liver damage, I would proceed with treatment.  In fact, if I wanted to get pregnant again, I would treat no matter what stage my liver was.

I am a geno 2 vl 1.5 million stage 2 liver damage.  I have taken my next-to-last shot.  I have been clear of the virus since week 4, but have another PCR test in a week or two.  Treatment hasn't been fun, but not the worst time of my life either. I've followed excellent advice and bolstered my courage here and am very happy with my choice to treat.  We geno 2's are very lucky that we only have to treat 24 weeks.  You can do it.  Make sure you have a good dr before you begin treatment with him.  If your anxiety is getting the best of you, get your dr to prescribe an AD before starting treatment.  I have been taking Lexapro while on treatment, and it's been a huge help.  Stay busy and the time will pass more quickly.

Laika

[nanniegea]

Sorry to hear about the stigma part of this disease. I know how you feel though cause I have been treated funny too, only rarely by strangers. My own family give me the feeling that I have something they can catch if they should get too close. Instead of learning about this they just THINK they have all the answers. Things being said like,"you just wait till your finished with the meds, you will finally have your health back. It doesn't seem to matter that I have been on disability for about 5 years now and that was before I even found out I had hepc. People need to stop thinking they have all the answers and that they know what you are going through because unless they have this, they don't have a clue. I hope things get better for you and that the stares and awful treatment you have experianced stops...it just isn't right.

[cquest]

I am scared too, sometimes I just cry for no reason. I am 1a with a HUGE VL of 62 million...even tho they say that doesn't matter, it still scares me. I hate the thought that this whole thing is MY problem and nobody can know what I feel and how it effects me but they all have plenty of advice and suggestions or they will say 'oh, it's curable' or 'it's not a death sentence'. Well, no not necessarily but it might be and who knows? I have not started tx yet because I am waiting for the results of my upper Endo bx which could make a difference in what happens...just what I need, something else wrong with me...So yes, I think we are ALL scared here and the only thing we can do is stick together and try to learn as much as we can. To be honest, I think we all know more about this thing than some doctors! Thank all of you for all your good advice!  
Cin

[avidreader]

I think the news overwhelms us all, but before I would make any decisions I would meet with a hepatoligist. Most GP's/family physicians don't know a lot about the disease and or benefits of treatment.

I first tested positive in 1989. I probably contracted the virus in the 70's and I had a 2 year old daughter(who at 18 still has not been tested.) My doctor told me not to worry--I wasn't symptomatic. Every few years during a physical I would ask my doctor about the Hep C and she would always say my liver function was normal not to worry. Meanwhile I was gradually (but dramatically) losing energy and picking up very achey joints. My doc kept writing it off to depression, stress and aging. When I finally had an elevated enzyme level she referred me to a Hepatoligist whose very first question was: "You've known you had this virus since 1989, why are you just arriving at my office in 2005?" While he was very professional you could tell that he was really pissed with my primary. Later, after I had the genotyping and the viral load tests I asked my primary what my genotype was and she said: C--you have Hep C. So there. And I'm really not indicting my doc I like her, they just don't know much about the disease.

Anyway, I went the treatment route and so far (4 weeks) sx have been minimal. I have a very busy full-time job and I coach swimming a couple of nights a week on top of that and I've been able to maintain the schedule with some minor modifications for naps. But--as my husband says--I was so sick to begin with that I couldn't be more fatigued, brain foggy and achey then I was pre-treatment.

All of which boils down to talk to someone who knows what they are talking about before you make your decisions. Your genotype has a faster treatment time and a much higher success rate then mine(1a) I think if I were you I would probably treat, but we each must choose our own paths on this journey. Trust me it's not the end of the world. My family, my co-workers and my friends have all been wonderful--there are millions of other people with this virus and we have to learn to be open and assertive about it.

Good Luck!

[amommy]

First of all Thank You.  It's funny, but some of my physical sxs immediately started to feel better after getting that off my chest.  It really helps to know there are people here in the same boat.
Puffins, I completely know what you mean about the stigma attached to this disease.  I have told VERY few people, just one or two friends.  We had a "playdate" with one of these friends, and she then called me later that day to see if her child was in danger of contracting the disease from mine.  While I totally understood her concern, it just was a TERRIBLE HORRIBLE feeling to go through dealing with that.  I felt so ostracized and sad that this is what I will face more and more should I choose to tell more people....
Anyway, I hope to be a more active poster here.  I always feel bad using up threads so I don't post much! lol Have any of you ever created a chatroom just for this board, like say on MSN or something?  It would be very cool to "talk" with some of you in real time.

[Puffins]

I can so much relate to your fears, I also am experiencing the same feelings, having two kids not knowing if they are infected with this disease.  Just today I went to have the blood test done to find out what type and VL I have. I feel like my life stopped. The only thing that keeps me going is reading all the posts and knowing that I am not the only one and that there might be hope. Unfortunately I have already experienced stigma associated with this disease and honestly need help on how to handle it (i.e. doctor's PA making comments about "immigrants bringing this over here"(I told her off on that one) , stares or no eye contact while handling my paperwork at the blood lab.)
I know I'm just blabbing but please endulge me.
Puffins
  

[Lynne5477]

I ditto everything that has been said so far.  I do, however, have a practical issue for you to consider and that is your insurance.  Tx is expensivie, so look also at how much of the costs will be covered by your insurance.

You are a lucky one to be a type 2.  I was a 1B and had tough sides the first few wks, then they leveled out and it wasn't too bad for me.  Did the whole 48 wks.  You CAN do 24 wks.  Would suggest if you decide to tx now, though, that you do have some support and help around the house/kids the first couple shots anyway to see how your body reacts.  You may not have any reaction to the meds but it would be nice to know if you someone to call on if you need them.

Good luck in making your decision.  We are all here for you.

[HepCinLA]

I'm also an older mom with a 4 yr old who is HIGH energy.  On a regular basis I tend to loose my patience quickly with my headstrong son.  Seeing another mom struggling with the same issues gives me hope doing treatment while parenting will be okay.
As soon, as I find out my VL, I will post my profile including email address in the event you'd like to correspond.
Thanks,

[rearfang]

Hi,
I've been quite lucky. I had all the same fears as you (my daughter is a VERY spunky almost 4 yo, plus, I'm an "older" Mom (45). So far it has not been bad at all (except the 11 days when I was battling some kind of bacterial infection--probably from having a low wbc count). I do sometimes lose my patience more easily, but I have been surprised at how good I have been feeling. Best of luck! Keep me posted.
Lauren

[HepCinLA]

amommy:  I can totally relate to your situation.  In the 90's, doctors thought I had cleared the virus.  It wasn't until more senstive tests were developed that they realized I hadn't.  I also struggled with the decision to treat.  I have two small children and always told myself I would treat when they got older.  Just as soon as I had made peace with that decision, an elevated liver enzyme or viral load test sent me into tizzy and I would lie awake at night thinking about the virus that was eating my liver.   I finally decided to take the treatment plunge and will begin shortly for the following reasons:
a) It's never a good time to treat.  Down the road I'll have new responsibilities.  If I waited til my boys were in school, then there'd be homework, afterschool activities, etc. that I'd have to deal with while on treatment.
b) tired of being infectious.  If I cut my hand, my boys don't get a bath that night.  Although my kids are negative, I don't ever want to take the risk of infecting them down the road.
c) If I had the dreaded "C" word, there would be no question on whether I would seek treatment/chemo.  So why is this different?  If I don't take care of myself now, then who'll take care of my family down the road as this disease continues to impact my health.
d) If treatment is too unbearable, then I can always stop and my liver would have gotten a reprieve from this disease.
e) Tired of waiting for better treatment.  Three years ago, I was told that better things were coming down the pike but that hasn't happened.  I'd rather take a chance and treat with drugs that have been out on the market for a while vs. new drugs where the  long term effects are unknown.
Given the success rate for your genotype, I would feel optimistic that in 6 months you can clear this thing.

rearfang:  I'll be starting treatment soon and wonder how you are handling motherhood while on treatment?  My concern is that I'll be too tired to get out of bed to feed, cloth my kids clean the house, etc.  Have you had any of these issues?  Do you have help (nanny/babysitter?)  I'm also concerned about acting moody in front of my children.  Have you had to deal with this?  Any information would be greatly appreciated.
Thanks!

[jmjm530]

Like revenire says, get a biopsy to find out how much liver damage you have. It's the gold standard An alterative is to get the Firbrosure blood test now. If the test shows no damage, you're probably OK. If it shows moderate or severe damage, then you'd want a biopsy.

If it turns out you have little or no damage, you can treat or wait. Treatment for genotypes 2's is shorter and has a very high (80%) success rate. If you decide not to treat, we're hoping even better drugs are no more than 3-5 years away.

If it turns out you have moderate to severe damage, then by all means treat now. Studies show that liver damage can be reversed once you clear the virus.

[scruffy]

I agree that the biopsy would be most helpful in your decision making. Given the circumstances you are not a coward nor are you indecisive. It's usually a tough call what to do and the biopsy will give very useful info most likely. One step at a time. frank