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Post Info TOPIC: Living for 35 years with the virus


Veteran Member

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RE: Living for 35 years with the virus


I've had it since around 1981, but was never diagnosed until about 8 months ago. I had elevated enzymes but no one did the test. Completely asymptomatic.

I'm in my first week of treatment. This disease can kill you or shorten your life span. I cannot imagine anyone not getting treatment if they can.

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Type 1B - Unknown for 30 years, diagnosed September 2011, started treatment February 2012

8 weeks Incivik - stopped early due to rash.

Continuing Pegasys and Ribavirin until January 2013 - 48 weeks

Undetectable from week 4 --> present



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I saw this thread back when it was new, but didn't know exactly where I stood, as far as my Hep C timeline.

I have  since come to the conclusion that:

A.  I got Hep C back in '69~'71 in the Army from Jet gun injections:

http://hcvets.com/data/transmission_methods/jet_injection.htm

-or-

B. I picked up Hep C in the mid 90s at work, doing building maintenance & construction in correctional institutions, where up to 40% of the inmates are HCV positive.

I can't "prove" that my Nep C originated from either of the above, but I'm pretty much done with speculating, and will just focus on getting rid of it. 

-Tim



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"hrsetrdr"=Tim

Treatment halted on Aug.8,2012 due to vision problem.  Aug.2013 SVR

"The best of life is far more powerful than the worst"- Jonathan(aka brandx)

 

 



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Please don't be offended, but I find comfort in the fact that I'm not alone w fatigue. I've always thot I was jus lazy. Napping has been a part of my entire adult life. I literally propped myself w caffeine n vitamins off n on for 25 years. Depression has not been a huge problem, but anxiety swells when I feel overwhelmed by my inability to perform like I want to in life. I've utilized therapy n use spirituality to help me. Makes me sort of a funky nut w/ a glow in the dark rosary, candles, and a meditation stool. Haha! But we all do whatever it takes. I hate to think about what this virus cost me over the years. I respect ur decision not to gamble on tx. If I weren't end stage, I prolly wouldn't risk it either. I can honestly tell you that 2nd week in, I'm feeling great. Start work Monday. It's a new school so I'll have to find my napping corner. (:O You get that, right? Be gentle w/ yourself.... Hugs, Karen

__________________
Diag 8-10. 1st VL 600,000. Gen 1a. Grade 4 Stage 4 cirrhosis w/ Esophogeal varices level 2. Viral load 1,750,000 7/12/10. Triple Therapy w/ Telaprevir began 7-15-11


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I don't know if they are all atributed to the HVC, but my symptoms have been: 

Fatigue which sometimes just comes over me in a wave and I feel as though I could just sleep right then and there.   

I used to get really bad stomach aches, but not so much anymore. 

My feet hurt when I first get up in the am, but by the time I hobble to the kitchen and make coffee, they start to get better.  Sometimes by the end of the day they swell up and have a slight rash on the top.

If I get too much sun, I break out in a rash on my chest and back, and it won't go away completly for a couple of months. 

My stomach hurts most of the time in the area of my liver.  Not a bad pain, but just enough to nag at me that something is wrong.  (My cat has started sleeping on my right side on top of my liver) (I think she knows)

Worst of all, I get these terrible headaches that wake me up around 4am, and hurt so bad I can't go back to sleep.  I was taking clonzapam for anxiety and suspected it of contributing to my headaches, so I stopped taking it, they got better, but I still get them about 2-3 days of the week.

These are just the ones I can remember because I am also getting more forgetful than I have ever been.confuse

Becca

 



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Diagnosed Dec. 2008. Genotype 1b, enlarged liver.  Started triple tx with Incivek on August 12, 2011.



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Hi there Iris, Lizard and karen, yes I`ve had it too since the `70`s, and waited a long while to do tx until the success rates improved.  What really made me sit up and take notice was when my late husband (who also had Hep C but was in denial) was diagnosed with Cancer of the liver.  We knew he had cirrhosis too, but somehow he believed he was invincible.... he wasn`t.

When I look back now I had been struggling with fatigue and fluey symptons since the early `80`s at least - I remember feeling so exhausted bringing up my kids and doing part-time work, I used to wonder what on earth was wrong with me. Like you Karen I had to rely on coffee, also pain killers and sometimes valium, to get by. What a mess! Finally got the dx in `95, but by that time I could no longer work. So, yes, I do understand what you mean, and it`s very hard going.

I`m not being judgemental towards anyone who hasn`t decided to do tx, but I`m just so glad I finally did it, wish I`d done it sooner, but no point in looking back.

Good luck in your tx journey Liz and karen, and all the very best to you Iris.  As Liz said, the new drugs for gen 1 are looking really promising with some good results coming in.

Love, Jill xxx



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Jill ~ Gen 3a -- 24wks Peg/Riba, Sep`10 - Mch `11

( Pre tx VL approx 4 million)  UND @ Wk. 4 and @ EOT -- SVR Nov `11

 

 



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and, yes it does look like we are the same era!  biggrin one of the most comforting things about this forum is I don't have to be embarrassed about how I got the disease.  I don't mind telling people I have it, but I don't tell many how I got it.. disbelief although it may have been one of the several Gamma globulin shots i got as a kid in the 60's, too...



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Genotype 1b. Diagnosed 1991. Started treatment July 12, 2011, in clinical trials. Viral load greater than 1.5 mill. Don't want to be sick...



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I know there are people out there who know more than me - the CC allele is found when they do the IL28B test - it is part of your own personal genetic makeup, not the virus. It is an allele on (or near?) the genes we have that deal with our own interferon production (I think, please correct me if I'm wrong). At first it was believed that people with the CC allele's bodies handled HCV better, and they respond better to INF tx, which may explain why some achieve SVR and some don't. The TT allele did the worst and the CT allele did OK. But of course more studies are giving us more information. If you can get the test done, I would recommend it - knowledge is power, and may help decide what course of treatment to do. They did it to me as part of this study I'm on, and it probably explains why my ALT/AST levels have never been really high, and why, after having this disease since the 60's or 70's, I'm still Grade 1, Stage 0. Here's what a google search pulled up:

http://infoviewer.biz/infodisplay/story/imn051220111554185068.html?APP=7&CU=imn5804

http://www.nature.com/ajg/journal/v106/n7/full/ajg201182a.html



-- Edited by Lizard on Monday 25th of July 2011 01:23:01 PM

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Genotype 1b. Diagnosed 1991. Started treatment July 12, 2011, in clinical trials. Viral load greater than 1.5 mill. Don't want to be sick...



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Hey liz, i was wondering what is a CC allele? I thought that had to do with your genotype.

love, Iris



-- Edited by Iris Dragonfly on Monday 25th of July 2011 07:06:24 AM

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

Genotype 1a ......



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Liz, brit,... looks like we have come form the same era to be for sure. Hope to be talking to you girls as you undergo your quest to quench your fire-breather.    Best of luck! xxooxx

Iris Dragonfly



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

Genotype 1a ......



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I've had it since the mid 70's as well, diagnosed in '91, and just started treatment. I decided to do it since the cure rate looks better, and with this trial I'm on I have a 60 % chance of getting interferon Lambda which has fewer sx. I figured I might as well go for it, but, up till now, it just wasn't worth it for me. My alt levels have been all over the place, as has my viral load but little to no fibrosis. Asymptomatic all along. I'm 1b but I do have the CC allele, which helps a lot. It seems like there are a lot of meds in the pipeline with fewer sx and improved results.

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Genotype 1b. Diagnosed 1991. Started treatment July 12, 2011, in clinical trials. Viral load greater than 1.5 mill. Don't want to be sick...



Senior Member

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Yep. They're assuming I got it in the 70's. I didn't know I had it, but I've slept in my classroom at lunch n after school for years. Severe bruising, lethargy, mental fog, had to work double time to stay on top of everything. My students test scores remained high. Taught college classes at night. I had to rely on caffeine at times. I think my diet n exercise actually masked the symptoms. Lots of protein shakes, vitamins, sublingual B12. If I had sugary stuff like cake or chocolate, I'd sleep for an hour. I'm sorry you're having to lice that that. It's no fun. I decided on tx because of being end stage. It's the lesser of 2 evils for me. Esophageal varicese is severe, stage 4, swelling. I know I won't see relief from symptoms for a while. You do what you can to cope mentally, spiritually, n physically. Hang in there. Yours definitely not alone. I'm sure many on this sight can identify w ur struggle.

__________________
Diag 8-10. 1st VL 600,000. Gen 1a. Grade 4 Stage 4 cirrhosis w/ Esophogeal varices level 2. Viral load 1,750,000 7/12/10. Triple Therapy w/ Telaprevir began 7-15-11


Guru

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Hi all, well I just want to say thanks for starting a new topic.

I've been living with the virus for almost 35 years. Have had fairly consistent high alt, and ast enzyme levels since i contracted the virus. There was a few years in the 90's when they fell within the normal range...

I came to this forum looking for people who have, for the time being, decided not to undergo treatment. I have decided against it thus far due to the horrible side effects and the slim chance of success due to the fact that my genome is 1a, and the risk of permanent side effects. I have dealt with debilitating depression, and I can't even fathom being more depressed.

I was wondering if there is anyone else out there who suffers hep-c symptoms like extreme fatigue, and bouts that feel like the flu, and regular stomach aches and headaches, as well as the challenges associated with trying to hold down a job, while feeling so crappy.    Blessings to all who read this,          Love, Iris

 



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

Genotype 1a ......

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