Hepatitis Forums

Hepatitis C Main Forums => On Hepatitis C Treatment => Topic started by: HazelAustralia on March 05, 2016, 10:58:59 pm

Title: 4 days left on Veikira Pak and Ribaviron
Post by: HazelAustralia on March 05, 2016, 10:58:59 pm
 Hi everyone:)

Well, that went quick! All of a sudden I have just 4 days left to go.

I won't lie - I have been really struggling with the anaemia - it did improve when the ribaviron was decreased, but my hemoglobin dropped again steadily once I began taking the ribaviron morning and night again - after a couple of weeks (?) of just taking it in the morning. The nurse told me last week that I can stop taking it altogether whenever I choose now so long as long as I let them know, but I feel like I'm so close to the finish line, I want to give myself the best chance. What's 4 more days in the scheme of things?

I think I've been making a few really obvious mistakes at work and certainly not getting so much done. I have been aware of that. Would I, in retrospect have told them that I'm on treatment? No. It's a very conservative town and I need to keep my options open. Although I'm really proud of those who have spoken up publicly, in this case, I feel like its better for me and my family to stay in the closet. I told my other manager, who was completely supportive and gave me three months unpaid leave after paying out all my sick leave and annual leave. But there's a different culture around that work, and she is a thoughtful and open minded manager.

I have also had a few down moments - very sudden and quite strong. I'm glad I've had someone to talk to in those times (or my cat, who has been wonderful!). Also, just reading through the forums has helped me regain my optimism! Thanks everyone.

I am so strong and optimistic mentally and raring to go with a couple of projects that I really haven't had the physical energy for, but I think this down time has given me the chance to go back to first base with what I'm doing on earth and what I want to focus on next. It's funny (I do have the impression that this forum is awash with gen X & baby boomer's) getting a new start at our age among all the life transitions happening - deaths, births, the whole shebang - unusual really, but priceless.

I am really wondering what it will be like for it to sink in - once I hear back from the last two blood tests. What will it be like and what's next?

Hope you are all having a good day,

Here's to strength  ;D, collectivity  ;) and treating Hep C  8)!

Hazel



Title: Re: 4 days left on Veikira Pak and Ribaviron
Post by: Philadelphia on March 06, 2016, 07:39:03 am
I was sure I had commented on this, but I must not have posted it.

I found for a while I was feeling the effects of treatment and HCV slip away from me - I was aware of feeling better, stronger and healthier. Then I just gradually stopped thinking about  it and started living it.

It became the new normal. I don't tend to think a lot about how I am now. I just am.
Title: Re: 4 days left on Veikira Pak and Ribaviron
Post by: AussieRosa on March 09, 2016, 07:30:14 am
Hazel! I had no idea you were so close to the finish line. I should have, knowing you were 4 weeks ahead of me, but it just snuck up suddenly. I'm sure you'll get over those down slumps once you've been off the Riba for a while and your bloods are back up to your normal again. I think being anemic for so long on top of the giant emotional upheaval of treatment can really get us down. Now you have to face the long wait for SVR. That will be another challenge, fraught with its own emotional pitfalls. I hope you stick around and share that with us. I've really appreciated your shout outs asking how I'm doing. It has made more difference to how I've been feeling than you can know. All the very best to you and wishing you SVR success.
Rosa
Title: Re: 4 days left on Veikira Pak and Ribaviron
Post by: HazelAustralia on March 16, 2016, 05:26:15 am
....and another (drum roll) UNDETECTED at EOT for Viekira Pak!!!!



H.
Title: Re: 4 days left on Veikira Pak and Ribaviron
Post by: Philadelphia on March 16, 2016, 05:31:41 am
Great news!
Title: Re: 4 days left on Veikira Pak and Ribaviron
Post by: KimInTheForest on March 16, 2016, 12:23:33 pm
YAY Hazel!! Well done. :)

kim
Title: Re: 4 days left on Veikira Pak and Ribaviron
Post by: Flaco on March 16, 2016, 04:44:27 pm
....and another (drum roll) UNDETECTED at EOT for Viekira Pak!!!!
8) ;D ;D ;D ;D ;D ;D
Title: Re: 4 days left on Veikira Pak and Ribaviron
Post by: AussieRosa on March 16, 2016, 08:32:26 pm
Woohoo! That's the ticket. Congratulations, Hazel. And congratulations on your upcoming SVR12!
Rosa
Title: Re: 4 days left on Veikira Pak and Ribaviron
Post by: HazelAustralia on March 17, 2016, 02:41:32 am
Thanks! I am so happy, I keep wanting to run in circles like a cartoon character and find myself grinning at strangers! I know this might be some kind of honeymoon stage, but I don't need it to last, I am just really happy!! I was holding back hope during treatment until one day, I felt like it had worked - the virus was gone. I think I wrote about it here. It was like the time when I knew I was pregnant with my son.
More good news - he has been tested and doesn't have hep c. Not only that, his immune system is so good that he also fought off the antibodies from his hep b immunisations and has to have them again!

I'm booking in for a ferritin test and hopefully a prescription for iron supplements next week - thanks Kim. I am also awaiting your book with much anticipation. Congratulations and thanks! Thanks for living a creative life and for all your posts.

Thanks Philly for being my first port of call when I was waiting to go on treatment - for making the process and what was involved clear for me in a simple and encouraging way. Thanks for your blog and for your interviews. Thanks for travelling to Cuba!

Thanks Flaco for your messages and for your thoughtful and beautiful icon/avatar, thanks for your best wishes.

Thanks Bill for your strong presence, your reassurance and belief in my treatment!

Thanks AussieRosa for turning up just when you did, and for being so positive and for reaching out to me too.

I wish I knew what happened for Supermom.

At the moment I'm not concerned about the test in 6 months to confirm sustained viral response - I'm free now and I'll probably be free then too.

Let it be so for all of us, and for those who it isn't - strength and patience for the next cure.

Best wishes everyone,

Hazel
Title: Re: 4 days left on Veikira Pak and Ribaviron
Post by: AussieRosa on March 17, 2016, 05:51:42 am
Your post made me smile from ear to ear. I really admire your grace and open heart, Hazel. Wishing you all the very best, and hoping this state lasts and lasts. Please stick around if you have the time. Your presence on the forum is much appreciated.
Rosa
Title: Re: 4 days left on Veikira Pak and Ribaviron
Post by: Philadelphia on March 17, 2016, 08:35:28 am
You've always been a very positive force on the forum and that post was another example of it. Wishing you all the very best for SVR. You deserve it.
Title: Re: 4 days left on Veikira Pak and Ribaviron
Post by: NYCHEPCMAN on March 17, 2016, 03:01:42 pm
Congrats and way to go!!!

I don't know Australia medicine - but I thought that SVR12 is now the gold standard so there shouldn't be a need to wait so long....

Congrats and Happy St. Patrick's Day!! 
Title: Re: 4 days left on Veikira Pak and Ribaviron
Post by: KimInTheForest on March 20, 2016, 01:15:01 pm
I'm booking in for a ferritin test and hopefully a prescription for iron supplements next week - thanks Kim. I am also awaiting your book with much anticipation. Congratulations and thanks! Thanks for living a creative life and for all your posts.

Hazel

Hi Hazel. I shipped your book by air on Feb 23. So it seems to me it really should have arrived by now, 3.5 weeks later. I hope the post office didn't chuck it on a cargo ship after I paid for air... That has happened before. Let me know if it does not arrive really soon.

best,
kim :)
Title: Re: 4 days left on Veikira Pak and Ribaviron
Post by: HazelAustralia on March 25, 2016, 06:49:01 pm
Congrats and way to go!!!

I don't know Australia medicine - but I thought that SVR12 is now the gold standard so there shouldn't be a need to wait so long....

Congrats and Happy St. Patrick's Day!! 

Hi NYCHEPCMAN,

How are you going? Yes, it's the same in AU - EOT results are not taken as a 'cure.' Though my clinic is now moving to a 24 week, rather than 12 week test. I think this may be because of all the new patients who have just begun treatment after the government has made Harvoni freely accessible for everyone. I don't know that they factored in pathology costs, or whether individual hospitals and clinics are facing increased costs, but whatever the situation my (rural) clinic is clearly trying to cut back on pathology costs wherever they can. If I had a choice between a 3 month and a 6 month test, I'd chose the 6 month anyway, as longitudinal testing is where many trials fall down. So for now, I'm just living as if i'm cured, and I feel like I am, that's for sure.  Cheers, Hazel
Title: Re: 4 days left on Veikira Pak and Ribaviron
Post by: HazelAustralia on March 25, 2016, 06:54:23 pm
Hi Hazel. I shipped your book by air on Feb 23. So it seems to me it really should have arrived by now, 3.5 weeks later. I hope the post office didn't chuck it on a cargo ship after I paid for air... That has happened before. Let me know if it does not arrive really soon.

best,
kim :)

Hi Kim,

Our mail is terrible nowadays, and I think from past experience that it's especially bad between Canada and Australia, so I expected that it would take it awhile. But, good news, your book arrived Thursday and my son had collected it from the post office without mentioning it. I began reading it last night and for me, it's a wonderful premise and such an interesting meditation on the relationship between the body, the mind and our wider environment. I'm really enjoying it. Thanks!

all the best,

Hazel
Title: Re: 4 days left on Veikira Pak and Ribaviron
Post by: KimInTheForest on March 25, 2016, 07:17:04 pm
Hi Kim,

Our mail is terrible nowadays, and I think from past experience that it's especially bad between Canada and Australia, so I expected that it would take it awhile. But, good news, your book arrived Thursday and my son had collected it from the post office without mentioning it. I began reading it last night and for me, it's a wonderful premise and such an interesting meditation on the relationship between the body, the mind and our wider environment. I'm really enjoying it. Thanks!

all the best,

Hazel

I am so glad to hear the book arrived, Hazel! Thanks for letting me know. :)

kim
Title: Re: 4 days left on Veikira Pak and Ribaviron
Post by: Aladinsane on April 02, 2016, 12:14:18 pm
Thanks for sharing your journey. I start April 6 on Viekira Pak and Ribovirin after a long battle with insurance issues. My type is 1a and this is my first treatment. I was infected in 1971 from a blood transfusion. I am very scared but now want to get this process going. Again thanks for the input.
Title: Re: 4 days left on Veikira Pak and Ribaviron
Post by: Philadelphia on April 02, 2016, 05:21:29 pm
A few of us have done the Viekira+RIBA combo here - I did 24 weeks worth and blogged the entire, sometimes boring, sometimes entertaining and sometimes anxiety inducing process. Link to blog is below, but be aware it stretches back to March 2015 and I wrote a LOT.

Last week I got the phonecall to let me know I was svr24 and that made everything worthwhile.

It's worth it.