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Post Info TOPIC: Hepatitis Interview


Guru

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Hepatitis Interview
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Hi there, Will, and welcome from me too.

I have now listened to this lengthy interview with Mr Cleveland and I must say that although I appreciate this is a real life story, it is only one man`s experience and certainly isn`t representative of what the majority of people with Hep C go through, before, during, or after treatment with interferon.  I think it could give a very misleading impression to new members looking for information and it`s also factually incorrect on several points.  On the other hand his quest to find meaning and spiritually in his life while living with his health problems is interesting and inspirational. 

While many people do find treatment with interferon/ribavirin hard going, here we are given an extreme account of the physical and emotional side effects which just isn`t typical.  Mr Cleveland also states that some people become so depressed while on treatment that they can have a psychotic break, which again is very alarming and off-putting, and also a very extreme example. 

I agree with Lisa that anyone looking for real life experience and facts about any aspect of Hep C would get better and more encouraging information from reading our own members`s posts. 

Thanks though for your interest in this forum, Will.  We would appreciate it if you would tell us a little about yourself so we know who we`re talking with, and what connection you have with `Man School`, if any. 

 



__________________

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.

 

 



Guru

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I have to say, when I first had my diagnoses last year I started listening and reading information about Hep C and the worst case senarios put the fear of god up me. By the end of the first week I was already dying, going to have liver failure, need a transplant, never going to touch interferon, the list was endless. :D

The reality for most people is they have a very slow progression and will be treated before it is a problem, or before their liver reaches faliure. I think for newbies it is better to stick to the information of their own situation and progress from there. My first video I saw on youtube was a girl doing a webvideo taking Ribaviren hiding under a table telling how she couldn't breathe and was going through hell. Not a good introduction  - prior to finding sane places like this forum...

Saying that, I am now on the interferon I was never going to touch, I know I am in good health apart from the Hep C and will have a normal life later without liver follow ups.

The best inspirational stories are you guys that have lived through it, taking meds, cures, relapsed, trials and all done with humour and sometimes tears.....But it is a warm place to come and nothing is too big or small. This takes the fear out of the situation, showing that we are not alone, people cope, when they don't they can vent, and when they can they share.

A year later I can read and watch information with empathy because my own situation is different. But the first weeks I wish I hadn't read and watched the worst case senarios. I just thought I would mention this as some people newly diagnosed may be going through a similar response as mine was.

Thanks for sharing though. :D

 

 

 

 



__________________

Genotype: 3b

VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 

Tig


Admin

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Hi Malcolm,

I understand your position and agree with much of it. I also mentioned not agreeing with all of his commentary. It was an audio blog offered by our newest member Will and he found it to be inspiring. I found it to be interesting enough to agree with Mr. Cleveland in part. I would enjoy the opportunity to sit down with Mr. Cleveland and or the Man School announcer to provide an alternative viewpoint, backed up with vetted facts. Obviously Mr. Cleveland got the opportunity to voice an opinion not entirely supported by fact. Thanks for your viewpoint.

Tig



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Guru

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Hi Tig,

Sorry, the 'Man School' thing annoys me. Any newbie listening to that would get the wrong impression.

The word biopsy or staging is not used. For a Geno 2 to progress to cirrhosis is rare enough, but the progression to transplant after SVR is even rarer. The concept you can 'bleed-out from inside' shows a lack of knowledge. Only cirrhotics with portal hypertension and bleeding varices can do that.

The guy gives the impression he has found the answers. All this is straight from AA and 'The Big Book'. He should acknowledge this.



__________________

Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm

Tig


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A brief review of this audio blog. As I mentioned it's a bit lengthy to sit through, but once you start listening to this man, Bill Cleveland, you're kind of sucked into his commentary. The things he discusses and shares come from a state of mind that we have all experienced in one degree or another. While I don't agree with everything he had to say, most of his thoughts were very interesting and accurate. Some of the things I didn't quite agree with was his play on the existing stigma of HCV and the people we are individually. The methods of infection and some stereotyping didn't fit with my own ideas and perceptions. But that's what makes this an interesting discussion and I recommend you all take the time to listen to it. I'll list the description provided by the Blogger, "The Man School". As the name suggests, this is from a man's perspective and the thoughts shared may not be on par with the female perspective but in general, it fits us all. I do want to add that his experiences are with the older SOC's, with Interferon and Ribavirin, not the new DAA's that offer far fewer, less severe side effects. It will give those of you on the new treatments, a window into the recent, albeit past, treatment scene. 

Tig

Living With the Disease: HCV

 

Bill Cleveland is a great friend of mine who has Hepatitis C and needs a liver transplant. He came down with Hep-C from using dirty needles before he quit alcohol and drugs.  Now, Bill's 28 years sober and is a wonderful wonderful guy.  He's really helped me with a lot with various issues (namely my own sobriety) by sharing a lot of his great experience. 

 

In this episode we talk about:

  • Intravenous drug use and sobriety from drugs and alcohol.  
  • Getting in shape after getting sober. 
  • Losing over 100 pounds and getting very much into bicycle riding. 
  • Getting diagnosed with a then-unknown for a Hepatitis. 
  • Extreme lethargy and anemia from Hep-C. 
  • Pursuing natural treatments to clean his liver and treat his disease.  
  • Two rounds of Interferon treatment (which is like Chemotherapy for Hepatitis C.)  
  • Getting rid of the virus only to have it come back stronger. 
  • The depression and anxiety of being on Interferon. 
  • Having friends and family help through the tough times. 
  • His spiritual (and non-religious) path and how that helped him find some peace. 
  • Spiritual knowledge vs. spiritual experience
  • How Eckhart Tolle's "The Power of Now" book changed his life. 
  • Perception as friend and enemy.  
  • Meditation as a practical way get better and stop the downward spiral.
  • Dealing with sadness about his situation.
  • Helping others who also have liver problems.
  • Being on the liver transplant list and waiting for a new liver.
  • His club of men who are also on the liver transplant list. 
  • Breaking down a barrier and asking his wife for help. 
  • Simple ways to change your attitude. 
  • Developing Encephalopathy and dealing with that.


__________________

Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Senior Member

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Thanks Will. Listened and enjoyed hearing his story. A lot of us boomers share a more-or-less common HCV history. I was intrigued by the personal/spiritual slant he adds to living with the disease. For those wishing to skip the promotional stuff at the beginning, actual interview begins at the 3:55 point.



__________________

66 y/o male - Geno 1b - F4 cirrhotic dx 2001 - 16 wk treatment w/ Sovaldi/Olysio/Riba - Und @ EOT+24 SVR

 

Tig


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Your welcome Wayne! I added the hyperlink to assist everyone in accessing that worthwhile info. My thanks again to Will for providing the original web address.

Tig



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Senior Member

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Thanks for the hyperlink, Tig. Haven't watched either, but plan to.



__________________

66 y/o male - Geno 1b - F4 cirrhotic dx 2001 - 16 wk treatment w/ Sovaldi/Olysio/Riba - Und @ EOT+24 SVR

 

Tig


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Hi Will,

As this is a lengthy audio blog, I'll have to first welcome you to the forum and listen to it after! I'm glad you're with us and invite you to introduce yourself via our New Member thread if you like. We have many interesting and knowledgeable people here and we all welcome good and interesting information on the subject of HCV and living/obtaining a healthy lifestyle. I appreciate your contribution and hope to hear more about yourself. 

Tig



__________________

Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Newbie

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Listen to this interview about a man living with Hep C. Pretty inspiring stuff: bit.ly/manschool14

Living with the Disease



-- Edited by Tig56 on Saturday 29th of March 2014 08:08:21 PM

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