Failed tx, how do you get your mind around living with the virus?

[dointime]

Up until last year I thought I was healthy with early retirement and clear blue sky ahead.  Since 2 months now I am a failed tx'er (Prove2) and waking up every morning with a cloud hanging over me.  I'm lucky my liver damage is mild and my only symptoms right now are tiredness.  But still I know that I have a timebomb ticking inside of me and somewhere up ahead lies another probably vicious and medieval tx, if not debility/death from liver disease.  I tell myself that humane drugs will come in time for me but I'm 57 and not getting any younger, so that's not helping much.  

So what works for you to help you cope with this difficult mindset that many of us face?  I need to learn how to live with this virus and still get on with life and be happy.

Thanks
dointime.      

            

[Myown]

As a newly dx relapser I too dwell on Hep C every waking moment it seems. It was actually easier to deal with during the first couple of weeks upon hearing of my relapse. I don't know what I would have done without this MH forum and ALL the great people that are here. But for myself, I am leaning towards that maybe 'remembering to forget" I have this disease until I have a game plan, I may have to cut the tie or cord to the forum because it consumes me and when it gets to that point, it doesn't bring health and healing - though nobodies fault on forum, its my fault, the person who has the disease and what I internalize when reading the posts. So, I may have to disappear for a while and just come back when I know hear the advice from my doctor because at this point being on forum keeps my mind on hepatitus and I feel I am not able to go forward, ,,yet because of all the love and support I have received while being here, its almost like a death when I think about leaving. So I am weighing it all and trying to make a decision in the midst of what seems to be a depression that I have slumped into. But if I'm not around for a while, I want everyone to know that I love you all and thanks for putting up with me. I know that is not an easy task.

[susan400]

Good question, but I don't know that I have a good answer.  Some days, I say, hey, I've done all I can do and I need to leave the rest up to God and just quit messing around with the treatments.  Other days, I start thinking well, maybe, if there's a good reason to, I'll treat again.  I don't want to say that any of this is easy, because it isn't always the case.  But, there is life outside of thinking about Hep C, even for someone like me who has treated it 9 times.  I still have friends that I spend time with who have nothing to do with having Hep C, who I just go shopping with or go to a movie with or whatever.  I go to church and events at my church.  I take care of things involving my son, or my parents.  What I'm saying is, I just live my life and take each day as it comes.  Don't feel bad, I've never been a real morning person myself.  I have to force myself to get anything accomplished before 9 am.  I'm up, but I'm not really functional.  But 10 or 11 at night, that's it.  I'm either in bed, or getting ready for bed.  I usually do my stationary bike or treadmill in the late afternooon.  As far as doing the outdoorsy thing, that's not really something that I can do alot of as my skin doesn't tolerate the sun except for just like walking to my car and back inside and that's about it.  In the wintertime, I can do better because then, everything's all covered up (i.e., my skin).  I developed a problem with my skin a few years ago to where if I get in the sun for more than a few minutes, I can get a hives type of condition.  But, I have plenty of other things that can keep me occupied that don't involve outdoor activities.  When it's winter in Florida, I keep my windows open alot, so I get the feel of fresh air and I love that.  Sometimes, in the summer, I go up to the the N.C. mountains and I can wear my long sleeves there and get outside.  So, see, there's always a way to glimpse more of a positive side to just about any situation you find yourself in.  Susan

[dointime]

I feel so much better today because of getting your support and insights to all  this.  Thanks.   You've given me new resolve to take this beast by the horns and ride it out.  Maybe I could even say that it's taken hepC to get me off my @ss.  

Andiamo - my dream is to get a winter base someplace warm with sea to splash around in and plenty of light.   After several fruitless searches I think I'll give Mexico another go - off soon to check it out.  Too bad I'll be passing on the margaritas but it will definitely be an improvement on doing tx through a UK winter.        

Mre - Trust you to find such a cr@p tape of Mayall.  They are so doggin it.  Just cos you guys have got Memphis Tennesee over there (Teuf. reminded me).  What can I say.  

Jim - "If you feel good, then you're good."    I like that.  :))

I-horn - "I'm convinced you could be on fire and be happy taking that stuff."  
A friend of mine who's on anti'ds was on the top floor of a house that went on fire.  Her whole house and her clothes and face were black from smoke by the time the firemen arrived but she was not in the least perturbed.  I found it totally chilling.  Think I'll pass on the anti'ds - but that's just me.  

frijole - I never was a morning person and now I'm strictly an afternoon person.  Wonder if I'll ever get to a late-night show again?  Aw well, maybe I'd rather just have a walk on a warm beach anyway.

All - I'm saving all your replies to read over again next time I get an attack of the blues.  Really appreciate that you wrote.  Now, where's that exercise bike I packed away in 19.....?  

dointime                

[frijole]

It is depressing,but life goes on, right?  I find the farther I am from the treatment year, the more time gets filled up and the more time gets filled up the more normal I feel.   Sure, I don't function too well in the evenings.  I have to gage my activity to get most of what I want done early but I can still go niney miles an hour  until late afternoon.  Thus evenings are for the boob tube.  Sorry it has come to that, but at least it is only after 7pm.  


  I think it is a mind game.  I too had high hopes.  Even though I was not clear at week 12, I responded so well, I was just in shock when I relapsed.   But I was sitting around with about 8 ladies the other night and almost all of us had "bad blood."  One from CLL, me from hep C, and some of the others had treated for breast cancer.  Very few of us make it too our 60s without being damaged in some way.  It is just part of life.  If I have to live with the virus, so be it.

I am sorry you relapsed, doin time, but things will look brighter as time passes.  Like Jim said, we did just fine before we were diagnosed.
frijole

[dlr2007]

Good question you asked. I've spent years alternating between pretending I didn't have Hep C, convincing myself it was "gone", kicking myself in the @ss for getting it, and worrying that it's gonna kill me.
  Finally, thank God, I found this site and gained some knowledge and peace of mind. For me the two go hand in hand. I have minimal damage (Stage 1) and have had this virus for about 17 years. I'm not going to treat until the newer drugs come out- I'm taking the "watch & wait" route. I try to think of my Hep C not as a dangerous invader, but more of a rather unpleasant and annoying part of my body- like that extremely attractive cellullite that's appeared on my lower regions, or the frown line between my eyes that reminds me how grouchy I really am- ;). Not parts of me that I love, but not gonna ruin my life either. I can't live in fear of this virus- I know the possibilities and I will never again run from the reality of it, but I choose to enjoy the fact that I am pretty healthy right now. I tx'ed in '96 and never cleared. I always thought I was a nonresponder, but my doc told me the other day I did respond, just not enough. Oh well.
  So there's my solution- I enjoy today as much as I can, and maintain confidence that the new drugs will bring all of us SVR. I do worry endlessly about my hubby, but that's another story...
  It sounds to me like you have a very good chance of never having any serious problems with Hep C. I think I would try to look at life the same as you did before you were dx'ed- because really, it IS the same. I know it's hard to get used to, I still remember how it felt when I first found out myself, but with time it gets less frightening and more just part of life.
  Best wishes and prayers,
Dee

[l-horn]

I have a friend that is a PA/Retired Navy Medic that works at Brooks Army Hospital in San Antonio. They get a LOT of Iraq/Afghanistan soldiers returning. Burn center etc but he's an orthopaedic PA. Anway, I bitched a couple of times to him while on treatment and he told me, 'I don't wanna here it, you have no idea what I see every day.'  Here, you have support and empathy/sympathy because we are all/were in the same boat but for the most part, living with HCV is doable. I'm not preaching and I'm not saying the disease can't 'go bad' on ya' but keep things in perspective and remain positive.

[l-horn]

I'm convinced you could be on fire and be happy taking that stuff.

[jmjm530]

Doin: Up until last year I thought I was healthy with early retirement and clear blue sky ahead.
-------------
Sometimes, it's all perception. Given you have mild liver damge, there shouldn't be any logical reason why life shouldn't go on exactly as before you found out your diagnosis, with the exception of periodic monitoring and possibly treating again, if and when it makes sense.

The fact that you're a woman, have very little damage at age 57, are both very positive indicators that fibrosis prorgession in your case is extremely slow and indeed may never need treating, unless of course you so choose.  Assuming of course, that you've had Hep C since you were younger.

Don't live your life based on a label. If you feel good, then you're good.

All the best,

-- Jim

[Forseegood]

hey, some of us have lived with this for so long, and we're still kickin, with relatively low damage...I think the advice you got from msytermeet, andiamo, flguy and Willy was great, and it's funny about these posts, I needed to hear them too....wish you the best of luck...

[Willy50]

I'm 54 and have never treated so I have never walked in your shoes.  I do remember being diagnosed and my feelings that life was over, that I would never regain it or that it was all a spiral downward from that point.  I think it takes some time for our minds to get wrapped around these feelings of loss.  It really is almost a loss and greiving issue and we all have our own schedules and methods for getting thru it.  I agree that some of your feelings may be chemically based as Andiamo suggested but what you are feeling is a very natural response to a treatment failure.

It's a terrible disease.  I've lost a few along the way and have a few who are awaiting a transplant.  I can't minimise it's seriousness but I happen to believe that we will see some great treatments coming in the next 5 years.  Jack Kevorkian is about 83 I think and has had this for decades.  Just as we know that there are things we can do to make the damage worsen there are diet and lifestyle changes which may mitigate damage.  Some of this may be as simple as a strong immune system or good genetics.  The fact that you are 57 and have minimal damage speaks to me that you may have some breathing room to wait for better treatments.

Take care,
Willy

[FlGuy]

I think it's less a matter of living with hcv and more a matter of living with the ongoing plan that you and your medical advisors may come up with.  If you are like most, you had hcv long beforeit was diagnosed.  The un-knowledge of hcv allowed you to go thru life with out waking up that way every morning.  With little damage, you have a lot of options and a lt of time to evaluate an plan what the next steps might be.  You might need to live with it for a while but don't let it run your life.  When I relapsed I realized it was a fact and there are wys to deal with facts that don't need to eat you up.  Take your time, get advice, make a plan, live your life.

[mremeet]

I'm sorry you're feelin' down. What Andiamo said is right though, from my experience exercise is the best medicine for the doldrums. Especially when you get outside and are not cooped up inside a musty gym or fitness center. When you're outside going for a brisk walk, or cycling, or whatever, it makes you feel sooooo much better. Try and get as much sunshine as you can too. I know, not so easy where you live, but do your best. Take your sunglasses off and soak up as much as you can whenever you can. Also, if there's any way you can be around other nice people who are also exercising on a regular basis, maybe some kind of hiking club or something. My mom used to go for long walks almost every day with one of our neighbors, or my sister or whomever was around that was willing to go with her (I was too cool to go walking with my mom at that time ;-)   Anyway, pretty common sense I guess, but sometimes just hearing it coming from someone else can help remind us that it is true. Hope you're up and around sooner rather than later, take care.

PS>> Take a look at this one. Pretty good, but I think the drummer's had a bit too much ribavirin ;-)

http://youtube.com/watch?v=LLzYBTIDYO0

[Andiamo1]

Part of what you feel is probably the after effects of TX and part, the depression caused by HCV itself.

I think developing a passion for something and doing it is a great diversion from dwelling on health issues.  Physical exercise helps.  It is difficult to begin exercising when you don't feel well, but if you force yourself, it is possible to get in very good shape. and you will feel much better.

I have a passion for sailing and decided to live my dream even though I was sick.  It worked and I felt much better and younger even though I am stage three and in my 60s.

Good luck and I hope you feel  better soon.
Eric

[dointime]

- apart from playing the blues.  John Mayall still hits the spot.  Yeah, I swung through the sixties.  Not swinging so much these days though.  Want my Joie de Vivre back!