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TOPIC: Stories please

Stories please 1 year 5 months ago #26105

  • Hazel
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Hi all. As part of a conference application for the middle of year, I have promised to put together a collection/collation of hepster stories, jokes, black humour, heart and soul, one liners, art, or poetry, media links- along the the theme of, 'I am here to tell you how it feels'.
Please help! email me any thing at all that occurs to you. There is no time, I will be pasting it together with some assistance. This email address is being protected from spambots. You need JavaScript enabled to view it.
Note:
*I will not identify anyone unless they expressly ask to be named, tell me what you would like as a credit, eg, funny joke from MG, USA, or whatever. If you want to send me someone else's great post you remember, do, try ask them yourself or I will just make it anonymous anyway. You can find past gems by a keyword or 2 in the search function top right. Just note the post number, or paste it to me or open it and send me the link.
*I won't be able to include everything, please understand, I will try, I am asking in several places.
* I need it finished by end of May and it is not really started! It is to go on display at the No Hep Village at next hep summit.
* I just plan to print a couple of copies, put together like a photo book, then will put it up online for everyone sometime this year.

I want to report on, for instance- What stigma, fear, relief, hope, etc feels like, in medical setting, family, personal, workplace. What a difference support on this forum has made. How the whole global transnational friendship helps- or not, what ever, tell me anything.
Thanks,
Hazel
Genotype 3 30 years, 2x treatment interferon/ribavirin non responder. Cirrhosis 17 years. Fibroscan, decompensating, 40 down to 22 by 29/3/16- now down to 6.5, normal, no cirrhosis. Started Buyers Club Sof/Dac 14 Nov 15. SVR 12 29/0716
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Stories please 1 year 5 months ago #26108

  • rohcvfighter
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Hi Hazel,

That's a very nice and challenging idea, I will make some thoughts about what to send you (there are so many things to tell and it will be difficult to summarize it :) ).

Cheers,
RHF
In fiecare an HCV ucide peste 500000 oameni.Medicamentele generice pentru hepatita C functioneaza. Nu deveni statistica! Cauta pe Google “medicamente generice pentru hepatita C”.
HCV kills more than 500000 people every year. HCV generic drugs work. Don't become a statistic.
By sharing this Youtube video you might save someone’s life!
My TX: HEPCVIR-L[generic Harvoni]-India
SVR52 achieved
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Stories please 1 year 5 months ago #26130

  • beaches
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Hi Hazel
tbh I'm not comfortable with this. I wrote on the forum under the assumption that my comments weren't going anywhere else. Please don't quote any of my posts regardless of whether or not you identify me.
Genotype 1a
Diagnosed in 2004, had HCV for all my adult life. Until 2016!!!!
Harvoni treatment, started 19 March 2016
4 week results Bilirubin 12 down from 14 pre treatment,
Gamma 25 down from 52, ALT 19 down from 63, AST 19 down from 47,
VL <15 down from a lazy 6 million or so

EOT Results
Bilirubin 10, GGT 18, ALT 19, AST 21, VL UND

12 Weeks post EOT
Bilirubin 11, GGT 16, ALT 22, AST 20, VL UND
Cured baby
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Stories please 1 year 5 months ago #26141

  • Ariel
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Thank you for your post Beaches.

I also state: No person has my permission to use anything that Ariel has blogged outside this forum in any format.

This forum is a place where we have created a safe haven for those who need tx and each person is different in their journey.

As to my dear friend who has recently passed over I can ask his surviving family member their position on this request. In the meantime I was asked by him to act on his behalf and ask that all here respect him and do not use GAJ words even anonymously. The approval if that was to happen would need to come from the family.

Thank you for continuing to try to spread the message of the HCV cure however please respect my privacy as I am of the same feeling as Beaches. I’m not comfortable with it.
Ariel
Gen 1a
Peg/inf/riba 2012(!) stop @ Wk 43 potassium low +issues (rlps week 4 post tx, VL120,000) scnds eg. adenomas.
pre sof/led VL 240,000 Fibsc F0
Day 25 <30
Day 32 UND
Week 10 UND
EOT UND ALT11AST17GGT19
SVR4 UND ALT10 AST16 GGT13
SVR8 UND ALT <9 AST16 GGT15
SVR12 UND ALT14 AST19 GGT12 Bili 5
EOT +18 ALT13 AST20 GGT9 Bili 5
EOT +21 ALT11AST15
Cured SVR12
Dysplasia Adenomas RemvdAug '16
SVR24 UND ALT11AST16
ColonoscopyClear Nov17
LumpectomyClear ‘18
LithotripsyCytoscopyBiopsy 4/18
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Stories please 1 year 5 months ago #26142

  • pat1
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Hi everyone
Hazel, rohcvfighter, beaches, Ariel #flower
My words are personal, they are an account and response to a journey through very difficult times. I can’t imagine how my words will articulate the struggle outside of the context created within the forum. I am an artist, my words are poetic. I have struggled throughout this journey and have been supported by my friends in the forum. I am very appreciative of the meds provided to me through FixHepC and have shown support in return. HepC is serious, there are no jokes or black humour stories for me. It is deadly serious. I am not just an anonymous name. I request that you not do search my name and story to relate it outside of the forum. Let’s not trivialise this in a photo book journey. Searchers can read the stories online as it available to the public. X #flower
gt 1a VL 6m
F2/3 FibroScan - 9KPa in 2011 and 7KPa in 2015
sof/dac 10 December for 12 weeks
pre tx alt 85 ast 51
4 wk alt 34 ast 31 UND <35
8 wk alt 29 ast 32 UND <15
12wk alt 25 ast 25 EOT 3.3.16
SVR24 UND KPa5.3 F0 in normal range
I am well
.forever grateful to fixhepc
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Stories please 1 year 5 months ago #26143

  • rohcvfighter
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Hazel wrote:
Please help! email me any thing at all that occurs to you.
.....
*I will not identify anyone unless they expressly ask to be named, tell me what you would like as a credit, eg, funny joke from MG, USA, or whatever. If you want to send me someone else's great post you remember, do, try ask them yourself or I will just make it anonymous anyway.

My understanding from Hazel's post was that in fact she is inviting us to send her something that is/was related to our own personal experience and then to let her know if we really want our names to be published too (otherwise it will be kept anonymous).
In addition to this, in case someone would be thinking to send to Hazel a post written by somebody else, that someone is invited to ask the permission from that somebody, yet as a safety measure in lack of such permission, the post would be made anonymous by Hazel. As this could be quite tricky, @Hazel: may I suggest that in case no explicit consent is given by the person who wrote the post, such post should not be used, even if it would be made anonymous?

Cheers,
RHF
In fiecare an HCV ucide peste 500000 oameni.Medicamentele generice pentru hepatita C functioneaza. Nu deveni statistica! Cauta pe Google “medicamente generice pentru hepatita C”.
HCV kills more than 500000 people every year. HCV generic drugs work. Don't become a statistic.
By sharing this Youtube video you might save someone’s life!
My TX: HEPCVIR-L[generic Harvoni]-India
SVR52 achieved
Last Edit: 1 year 5 months ago by rohcvfighter.
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Stories please 1 year 5 months ago #26146

  • Hazel
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Hi all,
I see your concerns, of course I would not use your words or posts without you offering them up, or wanting them included. There is really no need to tell me that I can't use posts, I simply wouldn't, and won't. I am not intending to trivialise anything- quite the opposite, my intention is to convey the depth of experience.
I am involved in several forums, this is the only public one, where anything said is viewable by any person, anywhere, forever. Despite this, I will, and always intended to, treat it as a closed group. Relax! nothing about you without you. Thanks Rohcfighter for your interest. Your contribution will be highly valued.
Genotype 3 30 years, 2x treatment interferon/ribavirin non responder. Cirrhosis 17 years. Fibroscan, decompensating, 40 down to 22 by 29/3/16- now down to 6.5, normal, no cirrhosis. Started Buyers Club Sof/Dac 14 Nov 15. SVR 12 29/0716
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Stories please 1 year 5 months ago #26147

  • beaches
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No worries, Hazel!
Just wanted to clarify as simply as I could and make sure you understood.
I wish you good luck with your submission.
Genotype 1a
Diagnosed in 2004, had HCV for all my adult life. Until 2016!!!!
Harvoni treatment, started 19 March 2016
4 week results Bilirubin 12 down from 14 pre treatment,
Gamma 25 down from 52, ALT 19 down from 63, AST 19 down from 47,
VL <15 down from a lazy 6 million or so

EOT Results
Bilirubin 10, GGT 18, ALT 19, AST 21, VL UND

12 Weeks post EOT
Bilirubin 11, GGT 16, ALT 22, AST 20, VL UND
Cured baby
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The following user(s) said Thank You: DrJames, Ariel, Hazel, hanknassi, Mar
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