Happy Hungry Update Continued

[Happyhungry]

Life after TX and SVR
• First and foremost – life is great!  Getting rid of the dragon after fighting with him for 40 years is a wonderful thing.  My mother once told me that all the pain and suffering of pregnancy and childbirth are instantly swept away when you finally get your baby in your arms.  That’s exactly what SVR feels like.  All the trials and tribulations of TX are just swept away.  
• Secondly, you begin to see just what the hep C was actually doing to you.  Before TX there is this process of denial and disbelief.  Even if you don’t have any symptoms – you tend to downplay the disease.  If you do have them – you tend to attribute them to other things – diet, lack of exercise, stress, old age – you name it.  But then when you clear the virus you realize that so much of all that stuff you were denying was in fact the result of that pesky virus.  Those symptoms were as real as the virus itself.
• Now the treatment itself is very severe and there are after-effects of various kinds.  Your immune system is definitely “interfered with” by interferon, and it may not be quite the same afterwards. I am in touch with several people who have successfully gone through TX and have subsequently had to contend with after-effects.  But all of them would say that these after-effects are NOTHING compared with freedom from Hep C.  There is a lot of negative stuff going around about the treatment and it tends to emphasize these after effects.  You need to keep it all in proportion.  Yes there are follow-on issues.  But they are trivial compared to the enormous damage wreaked by the hep C virus itself.
• The treatment is a cure.  It is not a palliative measure.  Again there is lots of negative stuff going around about whether or not the virus continues to exist in the body and about the possibility of later relapse.  I’ve read a lot on Medhelp about whether or not “cure” is the right word. But the main message is that the overwhelming majority of people who get their SVR have finished with hep C and finished with it FOREVER.  Think about that.  If that is not a cure, then I don’t know what is.   And it’s a cure that works for an increasing majority of those who try it – even those of us with the more difficult genotypes.
Well now that I’ve got all that out of my system, I find that my original intention – to talk about the after effects of treatment – no longer seems that important.  Well, for one thing I am just 6 months post TX and I believe that it takes a year or more for the immune system to recover after interferon therapy.  So my observations are not yet that relevant.  Stay tuned for another 6 months or so.  Secondly, some of the after effects were exacerbated by my own euphoria-driven stupidity at obtaining an SVR.  Well no, it wasn’t about going and getting blind drunk for a few months – but in my impatience to recover my old life, I did some things that I probably should not have.  Well more about that upon request.  The only message that I should perhaps pass on at this stage is to simply say “take it easy” to those getting their SVR .  You don’t have to worry….it isn’t going to go away! You can relax and take your time.  You don’t have to rush out and immediately visit all those places or become a football player or write a novel or whatever.  Life is fine.  Wake up and slow down.  Roses and coffee are enough.
I want to thank all the wonderful folks on this site who helped me through my treatment period.  You were all absolutely wonderful.  

[comeagain]

LL thx for those  encouraging and empathic words, your a doll love you!

Take good care of your self now, wish you a blessed SVR life, full of  health and lots of  energi.

HH many people have asked about  what it is that you have done.
I hasn´t until know.
Because i thought I had a pretty good idea, but I`m not so sure anymore.

I thought you simply had been doing to much to quick and had caused your self unnecessary pain or slowed up the rehabilitation.

If not I also wanna know please tell!
ca, a curious man

[Lady Lauri]

Comeagain. Dam! I feel bad for you on that...people calling you lazy, etc.! The past 3-4 years, the fatigue, muscle pain....I was always thinking 'what IS wrong with me"?? I am a very hard worker, not a lazy bone, go-go-go. I now admit to my family and close friends, 1 boss.......that the past couple years when they was things to do or PR events to go to and I'd say "I have so much to do, I can't go" , that I was ACTUALLY coming home, crawling in bed and sleeping and hurting many days! I was afraid they'd think I was lazy, a hypocondriac, also!! (How many times can you say I feel sick, go to Dr.s , be told your 'fine' before people think that!?) You know the terrible fatigue Hep causes, tx also, don't let anyone put you down like that! And hoping for your SVR this round!

Debbie, Jackie, welcome here !
Debbie.... I was dx'd end of May 07, bx and into tx within 3 mths. time. It can be overwhelming and finding this site helped me so much. Your just entering the journey, and glad your here to help it all settle in, decide on tx, get help, answers.
Good luck ahead, LL

[Lady Lauri]

What a great post! You are sooooo right on not jumping up as soon as tx is done and getting out there , back to 'normal' in 10 days! I tried that, trust me also, not happening :)
Healing from tx is actually, once you realize you have to go thru that also-it is not 'over' yet- is every day doing a little more, appreciating that you now can. I did yard work last few days, while my muscles throb, it was like a party :) I can do it again! I couldn't do 10 minutes of it on tx. But I also know that I can't do it ALL yet either. Coffee and rose's are great :)

Your also soooo right on how much damage the Hep has been doing to me (us) for 30 years. The past 3 years, as symptoms became obvious, I'd blame it off to getting older, working too hard, etc. As my wonderful Dr. said...'you have been 'sick' for 30 years. Once your past the healing from the drugs, you'll be a new person".
So true. One thing very different for me already is before dx and tx, I'd become quite 'scatter brained'. On tx, of course, VERY much so. But post tx 10 weeks now, I have this odd clarity in my head, honestly, even with lingering brain fog at times, it's like I was stoned the past 10 years (and I don't get 'stoned'!) It's hard to explain. As time goes by I can do more and more, and that's what the healing is. Am I glad I did tx, these hellacious drugs, went thru all the pain, sides........absolutely! Just the pre-tx worries and Hep monkey off of my back is 100lbs. lighter. If I end up with a few lingering issue's, it's better than my liver being destroyed every day and the many things that causes.

On this note, I do feel for the ones that have serious after effects, while it can happen, many don't and it is the risk each one of us takes in deciding to treat, I hope for them to heal eventually as well.

Enjoyed this post and you do have me curious on what you did go out and do :)

Happy SVR and Hep free life to you!

LL

[Debbie223]

I will be starting treatment in July... I have only known for 3 weeks that I have the virus, I am still trying to come to terms with that. It is so encouraging to hear SVR....that is what I am keeping my sight set on and am happy I will have a place to go with all my questions and concerns when I start this fun journey.....

Thanks to you all.

Peace

[returntosender]

Nice post.  Good attitude.  I agree with you that the effects of not having the virus do outweigh the treatment.  Next month marks my two year anniversary of completing treatment.  I am also SVR and I am quite happy about it.  Interestingly however is that I actually am still absorbing the fact that it is gone.  I have to continually fight against a "patient" mentality.  Those 30 so years of being sick trained some very bad habits.  To be specific I became so isolated with the illness and so angry at everyone who didnt have it that I still have tendancy to isolate myself.  I just have to stop being pissed off at everyone.  

I am still recovering believe it or not.  I have a variety of small stuff but I feel I am still improving each day.  It is truly remarkable how long it takes to shake off the treatment drugs and moreover the absolute trauma of it all.  Glad to see a fellow traveler doing so well.  

[comeagain]

It means that even if the fatigue is because of the HCV it dosn`t necessarily mean I´m not lazy.(it was suposed to be a joke)

I have done one treatment, relapsed but was free from virus during most of the time.
Now I´m txing for the second time took shot 18 yesterday. Had a break for 10mos between though, and during that time I´ve got rid of problems (medical conditions) such as the already mentiond cronic fatigue, joint pain, lower back pain insomnia, stiffnes in most body parts, kneepain etc this problems I´ve had for+ 20 years.

I´ve been living a very healty life past 20years no drugs alcohol ciggarets no mindaltering
substance whatsoever exept a lot of coffie. I´ve also done a lot of outdoor activities.
Maybe thats why my outside looks very healthy and young for my age. People have accused me for being hypochondriac, lazy a sissy and God knows what and that I´ve heard  from closed lovedones aswell.

Thats been going on for such along time i think I´ve started to belive in it myself.
Still not 100% sure!
Thats why it feels so good when people wright in post like Hungry Hearts here, it make me think so I havn´t been imagined it all up then.

Hows this for an explenation

BTW Welcome to the forum and God Bless you!!
ca

[jackiedee]

I am new to this didnt follow the chat what did you mean I only joined about 2 hours ago

[comeagain]

Thx for the post its really encouraging.
That about denial  and disbelive i recognize to well.

Since I´m a guilt personality I thought the severe fatigue I´ve been having for decades was because I was a no good, lazy,worthless son of *****!

Anyway i need post like this.  Good luck in the future and  thanks ever so much again.

God bless
ca

ps But just because I´m paranoid dosn`t mean I´m not being followed, if you dig what i mean!!

[dranurag]

Congrats! Your words are so true. I finished 1and 1/2 yr of tx and will go for one month post tx pcr tommorrow. Hopeful?

[eureka254]

"Roses and coffee are enough."
---------
So very true!  ...And thanks for sharing your experiences and observations... they only serve to make the roses smell sweeter and the coffee taste better. :)

Congratulations, too, on your SVR and 'euphoria'... (though as mremeet said, one can't help but wonder what it induced you to do... )

May your life continue to be great, and only get better.

[moahunter]

Nice post. I also am on the mend following treatment. I feel stronger every day. Like you, I have some little issues (in me, some sort of hand nerve damage, but not a big deal, and seems to be reducing with time).

I feel strong, and most importantly, not tired. I have regained 20 of the 50 pounds I lost on treatment (treatment had a positive for me), time to stop gaining weight. I still think about treatment a lot. I often remember how I felt a few hours after the injection, that feeling of the drug, tiredness, anger. All sorts of emotions that I guess I hadn't experienced in the same way. I have a lot of nightmares, but then, I have always dreamed a lot, and this may also as much for me be linked to how I got Hep C as much as it is to the treatment itself.

All in all, treatment has been the right decision - but it is a decision that it is sad to me that we have to make. I really wish there was something better than these drugs, and hope we will see such in the near future. Until then though - for many out there - there is a better life, and the decision to treat now would be well worth it, at least, based on my experience.

[mremeet]

Great to hear from you happy, it's really terrific to hear that you've done so well. And thanks for posting your experiences. I agree with you, people need to hear the positive side of treatment and life after HCV more often on internet forums. These experiences are undertold for the very reason you mention - most people who are cured of HCV simply feel better and get on with their lives. Since they don't have any serious problems or complaints they have no need to frequent internet support groups and seek help. I think people who are suffering from HCV and are considering treatment should always keep this fact in mind. The fact that there's an overly weighted viewpoint on support forums that makes treatment and its after effects seem worse than it is when viewed in balance with the curative benefits payoff.

And you said : "...some of the after effects were exacerbated by my own euphoria-driven stupidity at obtaining an SVR.  Well no, it wasn’t about going and getting blind drunk for a few months – but in my impatience to recover my old life, I did some things that I probably should not have. Well more about that upon request."   Not to be nosey, but I wouldn't mind hearing more about what you mention here. But if it's a private matter, obviously don't mean to pry. Also, can you expound in more detail about the effects of the drugs on the latter part of your treatment and how it's effected you so far post tx? Just wondering if you had some of the same problems I've had with appetite control, weight management, intra-abdominal fat etc. Also, if you've unexpectantly experienced relief from other symptoms that are/were seemingly unrelated to HCV. Like I was with nasal congestion, inflamed tonsils, sleep apnea, insomnia etc.

Thanks again for sharing your experiences - congrats to the tenth power man!

[sfwandwow]

GOD lets us see the light.. Congrat congrat  

[merryBe]

thanks for sharing that....we all need   to hear it.....whew!!
light at the end of the tunnel is always well recieved!!!
Have some fun fpr me will ya!!!!!

[sldb]

CONGRATULATIONS, Iam SVR now 20mths.. I will use the cure word at the 2 yr mark. Post tx sides can be a pain, but Iam so happy to be rid of the virus i try not to dwell.  Happy to be alive and well......Wishing you the same....Leah  

[rita863]

that was truly a great post.  i was touched by it.  congrats on your recovery!