Hep C Discussion Forum

brandx · Member

RE: best beats worst

Biggyb · Guru

Welcome Johnathan, glad you decided to join our forum. Lots and lots of support and info here. Your a real trooper and give myself hope. I go for 3 month EOT VL in a few weeks. (fingers crossed). But if it doesn't work it wont be my 1st time. I know i did all things possible.

Stick around. ~Bob

Kellie · Senior Member

I'm lucky I have a great NP. Before I started treatment she reassured me I could be Cured. Her positivity on this was the most important factor for me to begin treatment again. About the Incivik, she and Dr. Packros (my doc) did not think it would make much of a difference in stopping 10 days early, since I was und at 4 weeks. It was either that or stop treatment all together, because of the sx of the Incivik.

So I have moments when my thoughts go south, and think it won't work. Luckily those times are few and far between (maybe a little more now, because I'm close to eot. I do believe in the power and energy of positive thinking and healthy living, as it has kept me healthy, all those years before treatment. Very important. smile Thanks much for the kind words

brandx · Member

Thank you Malcolm. And congrats to you for running the gauntlet so well. You sure don't look 70.

mallani · Guru

Thanks, Jonathan. As post transplant patients invariably get infected with the HCV, the new all oral combos will be a godsend. Again, thanks for sharing your inspirational story. Cheers, keep us posted.

brandx · Member

Thanks for the welcome Malcolm. Much appreciated. I did the triple with telaprevir. The interferon/ribavirin went for 48 weeks, which didn't seem so bad compared to the previous 83 week non-triple round a few years earlier. The side effects were mostly fatigue, joint pain, digestive problems etc., the usual. The worst of the latest round was, of course, during the 12 weeks of telaprevir. Very spacey. I felt like I was operating myself with a remote from far far away. It helped to have a psychiatrist, which is a relationship that comes with your transplant. She helped with drugs that countered the worst of the sx. I don't want to suggest any particular remedies. It'll be different for everyone. But the triple therapy works! It's a game changer and it seems the treatment will soon NOT include the other two in the triple and for less time. When I went in for the six month confirmation, my doctor told me to take pride in being among the last to suffer through interferon, as if it I had a good war story. So there's every reason to hope for the best.

Zlikster · Guru

Hi Jonathan, welcome to the forum where u can leave your shyness behind lots of good folks here to share stories and help each other...

i must say big WOW u seem to be a great fighter! Hope you finally get rid of this pesky little virus and your (new) liver recovers and adapts well

all the best

mallani · Guru

Hi Jonathan,

A belated welcome from me. I'm delighted to hear your story as we have not have had a 6 month SVR post-transplant on the Forum. I'm impressed with your resolve. I presume you have done triple therapy with Incivek, Peg and Riba post-transplant. How long was your course and how were the side effects? Your story will encourage those who are struggling, as you have been through the mill. Cheers.

brandx · Member

Don't mind at all. I'm flattered.

hrsetrdr · Guru

brandx wrote:
Hello everyone. I'm not sure why it's taken me so long to join up here. I've been an onlooker off & on for years. I guess I found it difficult to share when I was sick. Maybe it was shame. I don't know. But now, after decades of HCV, then cirrhosis, then cancer, two chemo-embolizations, a transplant and three rounds of tx, I just hit the 6 months UND marker! Quite a ride. It's odd and thrilling to see a future without all the clutter I'd grown used to. I didn't always believe this, but I think the best of life is far more powerful than the worst.

Jonathan,

I'm glad that you found your way here, you're among friends now. Best wishes for the future,

Note: I particularly like your thought that: the best of life is far more powerful than the worst and am going to include it in my sig-line, I hope you don't mind.

brandx · Member

I know what you mean. Although I did get one doctor to use the word cured in a whisper. I noticed on your signature line that you stopped incivik 10 days short of 12 weeks. If I'm not mistaken, being UND at week 4 is a major threshold in determining a good outcome. I don't know how much stopping a little early effects that, but doctors tend to go for distance just to be safe. Those third drugs in the triple are pretty damn mighty. I'm rooting for you Kellie.

ios9 · Senior Member

Beautiful Earl understand English ? I'm sure your little sweety understand ALL languages !

Gershwin is born in Germany, from Russian ancestors.

His breeders speok German to him since his birth, he understood me speaking French when I came to get him in Berlin, understood my friend speaking English and understood Spanish from Spanish friends.

And, as all Peterbald, he was a great speoker, kind of international language every body could understand lol His best friends being .. dogs, I beleive he understood dog's language too :)

How Lucky you are to have Earl at your side :)

brandx · Member

Hey ios9. Animals have so much going on inside. It never stops amazing me how much they communicate and how helpful they want to be and are. Their senses are so beyond ours, so it makes sense that they can sense what's going on with us. Here's my very good little friend Earl. Although he doesn't speak it, he understands English like a professor.

Kellie · Senior Member

Yay for you! Congrats! I agree, you are cured 100%, as will I be. I have run into many folks that still say there is no cure, which really surprises me.

brandx · Member

Thanks Kellie. It helps to believe you're going to beat it. And yes, post 6 months UND represents an SVR that indicates all the nasty little dudes are gone and not coming back, although some doctors are more cautious than others, saying things like, "Congrats. You're 90% cured!." When I ask why not 100%, they say there's not enough data yet on post tp svrs. My intention is to be the part of the data they can eventually feel good about. I'm not religious but I do believe in belief, the kind that helps determine your own fate.

Kellie · Senior Member

Welcome Jonathan, this is a good place to be. Great group of folks here. I'm looking forward too to a simple life. One that's not filled with hcv sx, worry and tons of liver supplements. smile So since you hit 6 months post tx, that must mean you are SVR?

brandx · Member

Thank you. I like the bald cat.

ios9 · Senior Member

Welcome Jonathan, nice to have you here. You have been through so many dragons must of us are frightened to have to go through too, your experience will help a lot.

Hope you will find here as much support as I do.

Have a great day,

Do

brandx · Member

Will do. Nice to be here.

ios9 · Senior Member

brandx wrote:
Thank you. I like the bald cat.

Thanks Jonathan smile Gershwin is a Peterbald in fact, with 1mm fine silk hair. In a way, he saved my life (this is why he is here) because after his much too early departure over the rainbow (he was treated by Interferon and more) I suddenly became very ill (probably because of stress) and we discovered later on that I had hepatitis C most of my life, and had become cirrhotic too.

-- Edited by ios9 on Wednesday 14th of August 2013 05:51:41 PM

Dillo · Senior Member

Welcome Jonathan, I don't know that it matters when or how you get here...just that you do. Good to hear your kicking some dragon butt. Your among friends. Take your shoes off stay a spell. Sounds like you have plenty of experience to share.

brandx · Member

Thank you dustbear. I appreciate all the welcomes. I kind of wish I hadn't mentioned shame though. It was never meant to be the subject of the post, just a rumination about why I hadn't posted when it was really bad. Anyway, it's good to have the dragon in the dust and finally among you. Looking forward to more.

dustbear · Senior Member

Wow, thanks for sharing and wow you've been through a lot.

Everyone on this forum is awesome, so you are right at home with anything you want to share.

Once I told my family, the shame disappeared.

No monkey on my back, just a dragon to slay. biggrin

Matt Chris · Guru

Hello Jonathan

Welcome to the forum, your vast experiences will benefit and give insight to all the members and onlookers that could be going through the same issues.

Sometimes I find that changing my mind set from dwelling on my own problems to helping others with similar issues can lift your spirit and gain a sense of community and worth.

When we really consider all things, everyone faces trials and tribulations and inhibitions abouts frailties . Some are health issues, some are others problems, most of the time we never know about other people's problems. So the common course is to withdraw thinking we are the exception but we really we are not. We are experiencing life with these particular situations and others have there own woes which can be just as trying. The timing is typically different that our own which adds to the isolation, so changing our mind set / viewpoint / attitude about our illness can make the difference between being sad or joyful.

Jonathan you have made that choice and we are happy for you, thanks for all your future contributions to the forum.

Matt

brandx · Member

For what it's worth, I don't think shame is embarrassing. I think it's a normal part of illness. When it's acknowledged, it becomes more acceptable and tends to ease off.

tonib · Senior Member

I understand the shame part. It is embarassing. I have my son here visiting he has not been home in 4 years and I am laying on the couch like a slouch....but he understands and one of the reason he came is because he loves me and is worried about me......ah.........it feel so good to be loved and appreciated, and now I know I must have done something right in raising my kids.

You are a warrior and I think you have so much to proud of!!! What wonderful thing will you do for yourself now? I have been thinking about it, when I am SVR what wonderful thing will I do???

brandx · Member

Many thanks for your response. I agree with you wholeheartedly. If it was shame or just online shyness, it's long gone. My hope for this forum is in hearing the stories of others who are in the midst of their struggles with HCV and, since I've been through the wringer as you mentioned, and have emerged on the other side, maybe I can help people through it in some way. I guess I'll be looking at posts to offer up what I can.

Tig · Admin

Hey Jonathan, you've got nothing to be ashamed of! Certainly not here. You're with friends, that's something I hope you can grasp when you're here and make good use of it. You have certainly been through the wringer, but the fact that you're here, sharing your terrific story of success is a testament to your strength and determination! I'm glad you chose to introduce yourself and I personally look forward to hearing more about your journey. You've climbed a high mountain and did it successfully, you should have nothing but pride knowing you accomplished that!

brandx · Member

Hello everyone. I'm not sure why it's taken me so long to join up here. I've been an onlooker off & on for years. I guess I found it difficult to share when I was sick. Maybe it was shame. I don't know. But now, after decades of HCV, then cirrhosis, then cancer, two chemo-embolizations, a transplant and three rounds of tx, I just hit the 6 months UND marker! Quite a ride. It's odd and thrilling to see a future without all the clutter I'd grown used to. I didn't always believe this, but I think the best of life is far more powerful than the worst.

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~Bob~

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