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Post Info TOPIC: Cannot Communicate


Guru

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Steve, I'm pulling for you sweetie. Have been worried where you been, since you've been feeling so punky. I do hope the hospital visit turns out to be routine, and that you continue to be on the mend. Bye for now, Iris oxox



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in the silence of the woods, you will not be alone- Chief Seattle

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naďve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)



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Hey Steve,
Just wanted to let you know that you are in our thoughts mate and hope your back to your good old self real soon.
Our very best wishes,
Greg and Cate.

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The mind is like a parachute it works best when it is open. "The Dalai Lama" My blog: http://greghcv.wordpress.com/
Genotype 1a, started tx 1st Feb 2011, for 48 wks. Week 24 PCR 26/07/11 Non-Responder
New TX start date 12th Sept 2016 Harvoni x24 weeks.  VL 7.4 Mil. Week 4 "Undetected"



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Hi Steve, I`d just like to add a few words here, and also wish you all the best of luck with your appointment on Monday. Sorry to hear you`re still feeling so rough post tx, and I hope you`ll be back on your feet (not to mention your bike!) very soon. smile

Yes it`s true that the effects of tx are often to blame where outbursts and general rants are concerned, and we understand this very well. That is why most of the time we do stand back and only intervene in disagreements when it`s really necessary. But when someone is repeatedly involved in arguments over a period of time, including being quite rude to a new member, as happened recently, then we really have to put the good of the forum first. We need to keep this forum a place where people are made to feel welcome and where people can express their views without fear of an aggressive response. I hope you understand.

We do also realise that Deirdre has often been a good support here and has provided people with a lot of helpful information and tips on managing sx, and for that we thank her.

Deirdre has made her opinions about this forum very clear in her post and stated that she no longer wishes to be a part of it. We wish her well.

Take care Steve and heal soon. Keep us posted.

Love and all the best, Jill xxx 

 



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 



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The slightly Cherubic image is one of me clinging to my Nan horrified by one of those Monkeys they used to use to make you smile at Photographers. I feel a bit like that now.

My Nan passed away due to a drink related issue, She had way too much Cream Sherry and plunged down 2 filghts of stone stairs in a Birmingham Maisonette,although this sounds quite comical, this is actually true.

As I don't read everything, I've been ill, you know, any posts that caused offence or upset have passed me by, or I considered them Rage rants and associated the outbursts as a by product of this dreadful condition, after all a lot of us are here, including myself, as a result of my own lifestyle and behaviour, we are not all eloquent and lucid all of the time.

Indeed someone did upset me, but it was Medical People Telling me I had HCV, anything after that was a bit of a laugh compared to that, still each to their own, live and let live.

I will continue to support anyone who needs my help and I am involved with others directly and indirectly. There are those who would never dream of coming to open forums for whatever reason and for vulnerable souls who find it difficult to engage or have difficulties in other areas I find it hard to turn away if I can help.

Thank you for your kind words and continued support, I will, of course, let you know how things go on Monday.

All The Best.

Steve.



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Steve


Guru

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Hi Steve,

Deidre is no longer a member of this forum. Much as we dislike banning people, and it seldom happens, it is usually the only way to prevent more disruption on the forum. People can be having a bad enough time coping with tx without aggressive behaviour from others and it was her choice to leave. Members have all been supportive to Deidre and have given her the benefit of the doubt several times, but because of her repeated aggression and disruptiveness on the forum we felt we were left with no alternative. She did in fact post the following, declaring that she no longer wished to be part of the forum and would not be back:


http://hepcfriends.activeboard.com/t47623008/treatment-discontinued/

“for the record my doc and many others will only allow 8 people on treatment at a time, because they require more attention, and have to be monitored more closely. So the other patients are on weight lists. Incivek also was given away free to thousands including me, on their charity program.

I also think there is a difference between people who have done treatment before, and first timers. Even just the two drugs makes you sick, Riba can give you a rash ect.

Evereyone becomes anemic on treatment. The smart docs put them on rescue drugs.

I am so tired of what I see going on on this forum,

People making others afraid to have biopsies, or dare to do a treatment that might save there life. I've seen people die from this disease, and it was the scariest thing I ever saw!

Of course someone that couldn't handle it is going to complain, but what about all of us that did fine on it. It's easier for people tp post when they are upset about something, than when everythings is as it should be.

PS Conrats Becca June on finishing your treatment Succesfully!!

I will not come to this forum again. There has been so many changes, and so much negativity, without positive reinforcment. I also miss having a "treatment" forum, that was for people on treatment. I know there are places on this forum for care givers, and places for patients. But if all the caregivers, come onto the part that is for the ones on treatment, than nobody can be as honest, which is why my husband wouldn't get on here, for caregivers. I even see care givers, trying to give new people asvice on tratment. Well sorry, vut you have to feel it, to really know it.

So I'm not comming back to this forum again this is no longer a place I feel comfortable. I am VERY upset about what I have seen going on in here lately, and no longer wish to be a part of it.

PS. I figured if everyone else could complain, than maybe I had the right to complain too.”


I hope this explains the situation.

Love Steff xx



Sorry to hear you're still having such a rough time and I hope you get a better idea of what's going on when you go for your appointment on Monday.

Please let us know how it goes xx


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Geno 3a. 24 wks tx 20/10/05 - 06/04/06. Achieved SVR.



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For some Reason Deirdre cannot reply to Messages etc.

I understand that she was in regular contact with Krowdog, Jime, Fereck, countyboy & Barbra Lee.

She is not being ignorant, just can see you but can't reply.

I have her permission to post her Facebook Link here if this situation cannot be resolved.

http://facebook.com/deidre.holladayhughes

Want to know how I am?

Well here's something sincere and thoughtful, drink it up.

I believe that I wouldn't wish this illness on my worst enemy, that everyone should be given all chances of a cure and with POSITIVE help and support brought to you anything is possible, I have been the lucky recipient of that help and support during my 48 stint and it has helped me a great deal, for that I thank you all, you know who you are, special Thumbs up to my Antipodean Freinds, you pulled no punches, sugar coated nothing and stopped me from turning to jelly, it is hard when you have a good job and position in life and sudenly become "Secret Squirrel" albeit with a lot less weight and ever spreading sores and a disasterous time keeping record, but ssshhh now, don't tell anyone.............................think of the neighbours.

I have nothing positive going at the moment, as this may just be me, i will offer no advice or assistance as it all may be clouded by my own self doubt,

I believe that is the best way I can help, to stay silent.

I have an appointment at the Hospital on Monday, Don't know what for, it really isn't time for my "SVR?" Bloods yet, I think the same clinic handles Cirrohsis and HCV so that may be it.

Best of luck everyone.

As I say "Have Fun" for all its misery and despair it is still a beautiful world.

 



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Steve
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