Treatment Exit Strategies

[Mongo]

Howdy,

Taking a few cues from thread posts & a couple terrific telephone visits during the last few days, I wanted to get this thread started, and see where we end up.



Here are a few questions I'd like to kick around (answer some. none, or all)     


What was it like when you ended your treatment?

What did you do to make the transition easy/easier?

Got a post-treatment success story?

Got a post-treatment warning?




Those are just a couple ideas...anything you can contribute will surely go a long way to help someone as they kick the juice & riba-snacks...


Thanks & thanks & thanks,


Mongo

[Hank's mom]

Well Kerry - You asked....

From Ah ha to Uh oh - the reconfigured mind explores life anew.

I'm not deaf, I just don't want to hear as much as I used to aka how to ward off - Sure, you're okay, snicker, snicker.

I found my pants! - great breakthroughs in cognitive thought.

On the flip side of wise guy me - while I was on tx I discovered all that really is important like success no longer has to do with wealth, wealth no longer means money, money can buy a house but never a home.

On finding out how resilient, strong, and tenacious we can be when tested.

The true meaning of support.

Some subtitle ideas,
Susie

[Kira]

My story is -

I ended tx when I couldn't take it anymore, I couldn't hold down any water or food for two weeks, and the physical pain was too bad to deal with, so I gave up.

The good news is - I remained clear at the 6 month post tx pcr, and my one year is coming up soon.  I expect to still be clear, as I feel better overall, not sick anymore as I did for quite a few years before I knew I had hep c.

The bad news - the fibromyalgia seems to be here to stay, I have pain daily, but I seem to be adjusting to it, or taking pain meds as needed. I'm still glad I did the tx, and don't have to deal with that anymore.  But I really think the companies like Roche, and Schering, and the doctors need to level with us, and tell us the truth before we treat.  They need to tell us about the auto-immune diseases we might get, they should tell us that the constant pain we're in while on treatment is a side effect of it, not just tell us that they don't know anything about it, and leave us thinking that we must be making it up in our own minds.

I'd like some honesty, then we can decide what we want to take on, and what will be our own responsibility. 

So, yes, it does get better after treatment.  It takes some time to feel better.  But in my case, I'll never be the same again, likely.  Age brings on it's own problems, maybe this is just an acceleration of what would have happened anyhow.  I am happy that I cleared - that is certain. 

So take care of yourself, rest, eat well, check with the doctor if you seem to be getting some new symptoms.  Don't just assume they will go away, have it checked out, and take care of yourself.  You've been through a lot, and need some love and caring.  Give it to yourself first, and do what you need to do to recover your strength and energy.

Cris

[Pancho and Lefty]

It's not over till the end of August, but I'm planning for it now.

I'm trying to 'act as if' my psychological infirmities were going to stay with me. I'm trying to adapt my emotions and behaviors to the discrete non-sound of someone rubbing a balloon in the next room. My thinking is if it doesn't go away I'll have to find some way to deal. . . sooner or later. The concept of 'I'll start being happy tomorrow' doesn't do much for me. As fast as I can run doesn't ever get me caught up to the future.

Chris just showed us how to give up pills. I'll have some of that to do, also.

I'm looking through the end of tx to the beginning of life after. That means I need some solid goals. I know now I'll need to generate income. Not working during tx was the right way to go. I'm not pretending I won't need to work for the next several years.

Maybe that's it.. . I'm trying not to pretend anything. Life is pretty good.. . there's just no pink cloud this time around.

Peace,

Max

[Lee]

Again, another awesome thread....awareness of what we need to do, to plan for our individual exits from tx...Thank you all for your insights...it has me really thinking about what I think will work for me.  I appreciate many of the ideas offered.  I do see it as a new beginning, full of promise, for I feel elightened by the experience so far, to appreicate things taken for granted far too easily....and as it has been said, we learn, truly learn we have great inner strength, resiliance, and for me a recommitment to my faith foundation.I look forward to gaining far more insight from all of you, for I know this will be a very important thread.

Blessings and prayers to all,

Lee

[Hank's mom]

Hi All Post Txers and soon to be Posts -

Sorry if I was a bit glib last night, I certainly hope I didn't offend, sincere apologies if I did.

My post tx is a little different as I didn't clear and had to stop - I wasn't going to clear using Interferon and Riba. It took me awhile to get over that. I felt like I would fade away and die for sure. I still am angry about the time spent in vain, not for me, but for my kids during and after years of not being up to snuff before being diagnosed. I have placed that in its own compartment and hope my children have been able to as well. When my dad was in hospice, I felt terrible that it took a year away from getting up to see him - all of 20 minutes away - because I was in such bad/weak shape, and then when he and one of his nurses would stop by to take me to lunch I declined as I didn't want to alarm him if I had a bad moment and needed to get home ASAP (it took a lot of time and energy for him to get in and out of places with his scooter. But we did talk on the phone often, catching up and telling each other of our love for each other. Still and oh well...

Surprisingly, it didn't take long before I regained much of my mind, most of my fatigue ( I am still sick so not all of my fatigue is gone), and my comfort in venturing out thereby regaining my independence and social life. I actually didn't trust it would stay - used it - but thought it was just a honeymoon period.

I have had to consider new careers or jobs. I work at improving my art and expanding the kinds of art I create whether it be writing or visual. It takes a while to be noticed sometimes and it has its own set of difficulties such as seeking fellowships at art colonies which are not close by and in which I would basically live alone in a cottage or apartment to hone my craft(s). Again, this is because I am still sick and do have bad moments physically.

Depression - well, that has taken hold at times, especially when I am rushed to the ER for liver related issues - fainting because of low counts, going into shock because of nearly invisible glucose, kidney stones, internal bleeding. I feel like such a loser when that happens - Not Again! often passes my lips at hose times along with a few @#$%'s. I am both happy to be greeted by people who know me and sad that they know me because I have showed up at the ER so much. The EMTs barely have to get any background anymore - sheesh!

And yet, I am so grateful for all I have gained via the HCV and liver disease - discovering that I was right all alone - I do have amazing kids, meeting all of you, the dearest group in the world, increased patience, perspective and priorities. I got over the concept of it's all about me and mine.

Everyday, even the bad ones, are as a gift I am so fortunate to have and from which I have new memories to, I hope give new memories for those around me. By the way, much of my memory issues went away as well.

I am sorry for those who have developed other medical woes - I agree Kira - we should be warned that there is the possibility of serious side effects that quite often will remain with us for the rest of our lives - all in the name of kicking HCV.

I have no regrets about treating, in great part because I know I have tried and not "let it ride". It is all a part of life.

I hope all of this and more for my friends here and at home.

Keep smiling and be well,
Susie

[nialla]

i'm a geno 3a/stage 1
doing an extended treatment from the standard 24 weeks
i was riding the subway home from work
i was at 43 weeks, i could barely breathe
from bronchitis, i felt weak, ill, depressed and
i was overcome by this feeling of ... "it's over,
i can't do this anymore, i have to stop, this is not
good for me anymore"
i saw my doctor a day or two later and he agreed,
i'd had enough ... i finished up the riba that week
and did a total of 43 weeks of treatment and cleared.
sometimes you just know ... you gotta listen to your body.

*nialla

[nialla]

post treatment ...

i'm not gonna lie,
i have not felt the same since i did treatment 2006-2007
the aches and pains were so bad i started doing narcotic painkillers
every day, here i am addicted 2 1/2 years later ... still taking them
monday i'm going to pain management for help
to get off the vikes once and for all and to find another way to manage
spinal stenosis and osteo orthritis, greatly aggravated by interferon treatment
i can't sleep without sleeping pills, i have anxiety for which i take atavan
i am trying to move forward, leave bad habits behind, but it's been very, very difficult.
i am extremely grateful that i no longer have hep-c, it is in the past and something
i don't have to worry about, but .... prior to doing treatment, i didn't feel the way i do now.
i'm 46 but i feel older.  maybe it's just life, and unfair to connect treatment to how i feel today,
who knows ... so .. that's my story.  a successful outcome, but not without a price.

*nialla

[Mongo]

Nialla,

Thank you for your candor.  You've shared some very personal stuff. 

I admire that fact that, despite the challenges in your life, you still have room for feelings of gratefulness. 


If I may:

If you knew then, everything you know today, would you have anything different as you got closer to the end of treatment?


Respectfully.


Kerry

[nialla]

honestly,
i would not have done treatment
i was at stage 1
i no longer use street drugs since 1998
and i never drank alcohol
i quit smoking pot and cigarettes
i would have lived my life
as healthfully as possible
but there's no going backwards.

*nialla

[pete c]

 HEY KERRY & NILLIA

   Good thread . have just started my jounery down the TX trail .5shots into it. Yet as i read nialla,s post
 it made me think of  The doctors not always know as well as we do what our bodys are telling us.
 Example pa in pittsburg tells me that acordding to my # iam doing good, yet acording to my body at that time i knew i was,nt doing good.Yet  in prepairing for this to end   All i can do is trust God and belive in myself  and listen to those who have gone befor me.

                                                                   pete

ps I still have no regets for the choice that i have made as of today .

[negative1]

Well,

I feel alot like Nialla in this respect.....I would never have done tx had I known how bad I would get hit with the sides.

As all here know, I was hit with psychiatric problems near the end of tx and they went on for almost 3 years post. I did clear, for which I am grateful, but at what cost?

I can tell that I am different and my personality has changed.

I was happy to make it to the end of tx, but things just got worse after. I had no control of the way I felt and the way I thought, so I do not know if there really is an exit stayegy. I think that one needs to try to be patient when it comes to getting back to normal. The sides and any after affects from tx need to run their course and you deal with it the best you can. Don't be afraid to seek help if you need it.

The hardest part is the people around you. They have seen you on tx and how the tx affected you. Now that you are off tx, they will think that you should be ok....hell....you're off tx!

Many people will go through tx and fall apart at the end, as in my case. How do you explain that to them?

All in all....everyone has to deal with this in their own way, just as tx affects everyone in IT'S own way.

Earl

[DougV]

"What was it like when you ended your treatment?"
The first time it was like a dream come true.  No more shots, no more pills, no more weekly labs, no more monthly doc visits.  Second time I was crushed as I had to end early but otherwise same as the first.

What did you do to make the transition easy/easier?
Really nothing.  It is a natural and easy transition unless other drugs which could be addictive if involved.  To put in another way, I've been haunting hep boards since 04.  Never not once have I ever seen anyone miss being on treatment.

Got a post-treatment success story?
Not so far.  Relapse the first time, taken off early the second time and have no expectations that it worked. But after ending treatment over three months ago, I feel fantastic.  Same was pretty well true the first time but for some reason I feel even better this time round.

Got a post-treatment warning?
Be careful pushing yourself too far too fast.  Many of us lose a lot of muscle and muscle tone while on treatment.  (I don't understand it either, I faithfully laid on the couch watching sporting events and martial art movies so you would think I would have gotten in even better shape.) 

Would I do it all over, yeah I would.  But to me the major and only real side was apathy.  I was so tired and apathetic I didn't want to do anything.  Post tx that all went away quickly.  I felt better within a week and good within a month and great since about two months post. 

Doug

[beingbecky]

Post treatmnent experience for beingbecky:

I had lots of joint aches and pains after tx. I still do as I have osteoartritis. I think tx may have acelerated it I am not sure, as I am 47 and stuff changes.

I had to go to physical therapy for 4 months after tx. Treatment woke up an old car injury in my right shoulder and it has been messing with me on and off ever since. So dealing with muscle spasams and pain has been my post issue. I can relate to Nilla's post. I go to the doctor for some pain management and they offer the vicodine everytime and I tell them I can't have it, I am an addict. So I do let them give me tylenol with a bit of codine in it which gives very minimum relief but I don't take more than I should and I don't run out early and that's about the strongest narcotic I myself am willing to take. So I put up with bad osteo pain...I am going to a gym to get some weight off my joints to help things feel better naturally.

For me I had a harm time being outside in the heat probably for a least 3 months after tx. It made me sick. I had brain fog for probably 3 months post tx too. I enrolled in college while on tx, and it started one week post tx. Whew what a strange trip that first semester was...I was brain fogged so I was challenged, however got an A in english with help of th english writing center. So my truth is I felt somewhat crappy but got through it.

My hair well I tis still crap..and I think this week I shall just cut it short and watch for growth as it is not growing. I will be one year post next month. My hair is just growing in soooo slowly.

I feel much better in some areas, and a lil worse in others.

hang in there.

Becky

[Betty W.]

ALL I can say is: " i ADMIRE ALL OF YOU SO MUCH. I know you say I haven't been there or done that. I pray to my God that I don't have too. You are telling a story that needs to be told....Who else but YOU that HAVE BEEN THERE and DONE IT. For the first time in my life I really don't know what to say. I just cry, and ask my God why? Yes it is alright to ask Him why ! You are not being punished, I am asking Him to hold you in his arms and take the pain and hurt away, and make the drug withdrawl easy, and rid your mind of the "want and need" for them. Life is hard just every day living, and you haven't done this in so many years. May you regain your strength and stamina so that you can try to forget that horrible trip and go on with your lives, never looking back. Just go forward and help others, who are going through the same things. Pray for them, be a witness for others ! This I pray for you...........May God Bless You All.......Betty