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The end of treatment can't come soon enough
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The end of treatment can't come soon enough

I've been posting off and on on the board for more than a year. The knowledge and support of all of you have both been a Godsend. I'm now coming up on week 67 of 72. My insurance would cover four additional weeks of treatment and since I didn't officially clear until week 28 I've considered extending to week 76. But I also realize I need to stop this treatment, even if my chances of SVR are little better than 50%.

I have so many emotions I don't know where to start. When I started treatment I was 2/2, age 50, and asymptomatic. Like a lot of you, I wanted to be aggressive. It drove me crazy to have the virus working its way inside of me. I also thought I was being considerate to my wife and kids. The last thing I would ever want is for my wife to have to deal with growing disabilities from diminished liver function at what should be a healthy and happy time in her life.

But it can't be stressed enough that this treatment will make you sick – maybe a little sick, maybe a lot, but it has its impact on just about everyone. I seriously miscalculated. I kept my illness and my treatment secret from everyone except my wife thinking I could tough it through. I run a small business, and now find 18 months later that through brain fog and lethargy I've run it into the ground. My parents are old and frail and I haven't been able to support or visit them because of my own disability (and they don't know why). My kids are growing to adulthood with a father with the mental acuity of a 72 year old.

Before you start this treatment, please make sure you have the support systems in place to see it through. You're incredibly lucky if you have a stable, undemanding job with a good leave policy. (You're even luckier if you don't need to work.) But you need to have a plan. You can't just start and take it day to day. The treatment itself is disabling, and it is very, very long. Whether I clear or not, I have no choice but to stop the treatment to try to mend my life. I thought I was undergoing the treatment to mend my life and I was a bit deluded. The treatment created a major rupture. Such are the ways I guess of a serious illness. The treatment should never be taken lightly.
Tags: treatment
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15 Comments Post a Comment
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238010_tn?1293989260
"Don't take treatment lightly" is good advice.  There are health risks with tx, and tx creates a lot of stress not only for the patient but the family he/she lives with too.  

It is especially hard if you have to extend, like you (and I) have.

It sounds like you've already made the decision to stop at 72.  I hope you've exhausted every other option to get outside support to allow you to go to 76.  

For me,these darn drugs have messed with my head and gotten me so down at times that I've started thinking things are worse than they really are. And it's a very, very tough fight to get out of that.

Your liver is in better shape than it was 67 weeks ago, and you are going to start feeling like your old self again soon after tx ends, so things are looking up.

Here's to you and I celebrating our super late responder SVRs within the next year!

smaug
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Avatar_f_tn
Wishing you both the best.  I'll be looking for those SVR posts.

jd
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Avatar_m_tn
I have been lurking -and posting- on this forum since beginning treatment 8 weeks ago. Like you, I have found it "a Godsend."
You, however, are one of the people on this forum who I have continually admired. Your posts are not only educated and well informed, but demonstrate an individual with a high degree of sensitivity as well.
I am sorry that the treatment has caused you so many problems.
But if you achieve SVR, it really will all be worth it. Your business will hopefully recover, and if it doesn't, you will surely make a living. Your wife will forgive you. You will re-aquaint yourself with your children. And your parents will see you again.
Ultimately, it is your health that is most important, and I strongly believe you have made the appropriate decisions regarding it. You only have five more weeks. Hang in there.
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Avatar_m_tn
A moving and heartfelt message. I'm going to add this thread  to the "Members comment on side effects" thread in the Health Pages. All the best picking up the pieces and what hopefully will be a well deserved SVR. My life will never be the same from treatment either but physically things have improved in the last two years since treating and I wish you the same in that regard.

http://www.medhelp.org/health_pages/Hepatitis/Members-Comment-on-Side-Effects-of-the-Treatment-Drugs-During--After-Treatment-/show/530?cid=64
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619345_tn?1310345021
THANK YOU FOR YOUR HONESTY AS USUAL  YOU EXPLAIN YOURSELF VERY WELL  WISHING YOU THE BEST  I TOO AM SMALL BUSINESS OWNER AND KNOW EXACTLY WHAT YOU MEAN THE MAIN REASON I HAVE DECIDED TO JUST WAIT AS I HAVE NO SUPPORT SYSTEM MEDICALLY OR PERSONAL AND NO OTHER INCOME
IT WOULD RUIN MY DAUGHTER'S LIFE  HOWEVER UNLIKE YOU I SUFFER FROM MANY SX'S NOW THAT FRANKLY MAKE IT DIFFICULT TO STAY ON TRACK WITH MY HEALTH COMING FIRST
WISH YOU THE BEST FEEL FREE TO PM ME IF YOU EVER WANT TO RELAX IN MEXICO
TAKE GOOD CARE  AND LOOK AT A SUPPS REGIME FOR A SPEEDY RECOVERY  SAMe REALLY WORKS IN COMBO WITH B 12, B6 AND FOLIC ACID AND TMG AND LIPOIC ACID
LEF.COM  GOOD LUCK   BAJITA
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Avatar_f_tn
Let's hope we can pick up the pieces and a new day will dawn, either soon or within a year or two.

We're in a transitional time approaching the last stretch and it's easy to doubt the wisdom of our choice, given the unknown outcome and the fact that you and I could have afforded to wait.

We made our bed. If your business has to be re-built, it has to be re-built. You'll do it one brick at a time.

As for teenage kids and older, they're more resilient and often less tied up in us than we are in them.

My two are pretty devoted but they've been so busy this year, they haven't really noticed my absence from life, except that I didn't do much cooking and baking for the holidays. They did notice that!

I remember my brother had to take meds that gave him a lot of cranky side effects and when he visited my mom in her final days, he lost his temper. To this day, almost fifteen years later, he hasn't forgiven himself. So perhaps not being in close contact with your parents this year spared them and yourself.

Tx is a serious decision with unknown outcomes.

For us, there's no looking back now. Let's hope for the best and give ourselves time to put ourselves back together. I'm going to give it my best effort and hope you will, too.

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Avatar_m_tn
Thanks to everyone for their thoughtful and supportive responses. It's nice to know there's an outlet when you're feeling a little overwhelmed by all of this.

Bajawoman – I've been following your story and I know you're dealing with a host of symptoms and challenges. You'll be in my prayers, and who knows, I might just take you up on the Mexico offer.
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419309_tn?1326506891
You made the best decisions you could armed with the knowledge you had, and though the course and finish don't seem to be what you anticipated, you did what you thought was best at the time.  Don't be too hard on yourself for being human and taking chances -- it's only hindsight that feels like 20/20.

I often see you lend support to others -- you seem like someone who doesn't want to lean on others -- and I imagine it must have been a great burden not to share with friends and family.  I don't find it surprising that someone with your be-tough-and-go-get-em attitude, an entrepreneur, would treat aggressively.  You probably would have forever questioned yourself until you took the plunge -- but you know you gave it your best shot.  

My husband is struggling with himself about having to cut back his business, but he realizes he's in a position of "do or die" as a stage 4 cirrhotic with trace decompensation.  He's having a hard time with the idea of semi-retirement, but he knows treatment's the only shot he's got at 'rebuilding' his liver.  As long as you're healthy, you'll always have a shot at rebuilding your business and rebuilding your relationships.  

Best wishes to you, wherever your path may lead you...
~eureka
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419309_tn?1326506891
My most sincere wish that your road leads to SVR!
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233616_tn?1312790796
hey dude, I'm really glad to see you made it this far, and don't kick yourself one bit if you can't go longer, vut if you decide to, PM me and I may be of some immediate help.

I'm really glad you said what you did, especially because it's something many men will not admit...and it's important that men know how hard this can be, even when we do get help with meds for the sides, it can still be a brutal walk at times.

I'm glad you have made it this far, and you have all our support going forward whatever you decide to do.

mb
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412873_tn?1329178055
Good advice, thoughtful post.  That is your trademark.  The entire time you have been txing, you have been a serious source of support here on the forum.  

I am so sorry tx has taken it's ugly toll.  You will get your life back and with your positive attitude and strength of character I am sure you will find success in rebuilding your business, (or starting a new one) and rekindling relationships. (hats off to all extenders...an amazing group of incredibly strong people)

I wish you a smooth return to health....and most of all SVR

Please keep us posted =)

Isobella
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806995_tn?1265826776
Dear Marc, I wish you all the best! And most of all a SVR. I've not been around so long on this forum, but the people who are making a difference are becoming clear to me. You are definately one of them. I want you to know that your post in my thread

http://www.medhelp.org/posts/Hepatitis-C/From-14-to-8-million-after-4-weeks-is-there-any-hope/show/919375?personal_page_id=83882&post_id=post_4332565

could not have been more to the point for me. It gave me hope and pushed me to be critical at the very same time. FYI,I took your advice to heart. I'll decide in 10 days whether I'll stop or continue to 12 weeks.

I hope you will keep sharing your experiences with us. We all need to learn from eachother.
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408795_tn?1324939275
You're doing really well, and only 5 more weeks to go.  good luck


"Do or do not. There is no try".  
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Avatar_m_tn
Everyone's rooting for you Marc, you've got a lot going for you.....
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86664_tn?1291561395
Dear Marc,

You've had a grueling time but things will get better, I promise.  You've come so far, do all you can now to ensure SVR so you don't have to treat again.  Slowly everything will fall into place again and tx will seem like a distant memory.  Here's hoping and praying for SVR.


All the best to you,

Kittyface
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