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Author: Subject: The Hepatitis C Thread (new)

A Peach Supreme





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  posted on 2/18/2008 at 11:18 AM
The Hepatitis C Thread

What seems like many moons ago, I had a Hep C Thread here on this great site. It is time again. The disease is still rampant among our brothers and sisters. And not just ex needle freaks, read on, please.

I will attempt to share solid information on treatment and the disease, from reputable sources. I have pamphlets I will gladly mail to anyone.

The disease: I will share more detailed info, but briefly….. Hep C is unrelated to Hep A or Hep B. It is a blood carried and transmitted disease, no other way, not saliva (unless in conjunction with mouth bleeding), not sexual fluids (again unless in conjunction with bleeding), so it is only blood carried. But there are many manners of transmission people don’t think about (nail clippers, toothbrushes, coke straws, etc). The disease resides in the liver. It chews on the liver, scarring the liver and destroying good cells. It can lead to cirrhosis and also liver cancer. It is the biggest cause of liver cancer and 10 % of infected people get this. The primary first symptom is fatigue. For this reason, it is a subtle disease for many years, aka “The Silent Killer”. 4 million Americans have it, or one in fifty of us. It is among your friends, like it or not. It comes into your dentist offices, like it or not. Many of our musicians have it. Many, many Viet Nam Vets have it (group inoculations from shared bottles of meds in Nam).

Treatment: Dependant on Genotype (there are variations of the virus, Type I is USA most common), the TX is typically 48 weeks (it is a stubborn virus). TX is effective (say cure) 50% of the time. It is a glass half full or empty thing. But those are great odds. Many are scared away from TX for many reasons. I will post and elaborate on this much, later. I have tips and info on TX and dealing with it. TX consists of once a week self administered injections (muscle shots), and daily capsules. Interferon and Ribaviran, respectively. Holistic and herbal methods do NOT cure, despite internet claims you may find.

The rule for EVEYONE: Get Tested. If infected, Get Treated. Become informed, you are your own best mentor.

My story: I was a problem child. It took me two full rounds of TX to (apparently) whup the dragon. In my opine, I had to beat it down to size first round, then kill it the second round. I have been virus clear for almost two years. I should give hope to those who TX didn’t work the first time. I will again, elaborate more later. Treatment is hard, I won’t lie, but it is DOABLE. I found out I had Hep C after 9/11 when I gave blood the next day, and two weeks later got a later saying they rejected my blood and to see a doctor. I was wondering why I was always fatigued. Looking back, I feel another symptom is mental clarity. Also, I am seeing a big difference is overall health now, a compromised immune system has a ripple effect on all health.

More to come, I’ll post articles, links, just like the old days.

 

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A Peach Supreme



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  posted on 2/18/2008 at 11:23 AM
One main point to add initially:

Before 1992 there was NO test for the disease. Everyone who had surgery pre 1992 (as in blood transfusion, including cesarian birth mothers) should be tested. MANY people got the disease in hospitals!

 

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Zen Peach



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  posted on 2/18/2008 at 02:02 PM
Tony, thank you so much for bringing a new topic back to the forum. I hope it will bring back some of our friends who used to drop in on the last topic you had up here so we can see how they are doing.

One of my very dear friends is fighting the dragon right now. It is not an easy battle...but one that can be done.

Dusty lost another friend with Hep C a few nights ago. I posted to his GB a little about it.

 

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Ultimate Peach



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  posted on 2/18/2008 at 03:10 PM
I just found out friday that I have it full force. And now I've got to decide what I'm going to do about it? If I had to guess I'd say it's probaby from shooting dope back in the early 90's?
 

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  posted on 2/18/2008 at 03:12 PM
Clay,

Lean on Tony, he knows what you are going through and you are strong-willed like him. I will be praying for you buddy. Always good thoughts for you. Take care and let me know if there is anything I can do.

Wayne Knight

 

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A Peach Supreme



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  posted on 2/18/2008 at 03:33 PM
Clay, I am awfully sorry to hear that. It is not a death sentence or the end.

There are tow barometers that tell you your status.

1) Viral level. You need the results of a viral load test. 300,000 or less (sounds high) is relatively low. I was 14 milllion at start. That is very high, and my doc encouraged treatment right away because of that. The more active a virus, the more it damages the liver and quicker.

2) A Biopsy (of liver). This is not painful and an outpatient thing. It tells exactly how much damage to the liver is done. (scarring and damaged cells).

The two above will help tell urgency of TX. Sometimes, in low viral level and minimal or no scarring, a wait and see approach might be suggested. I, however disagree. The time to kill the dragon is when it is smaller, not bigger.

Beyond not treating, there is only one option: Treatment.

It is tough, but doable. You need to:

1) Prepare your life (essential details) and mind and body for it.

2) Find out insurance coverage (TX=$$)

3) Come up with a work plan (if you work). Most can work on TX, not all. Many, like me do shots on Friday night, spend the weekend taking it easy. In my case, I also missed Monday work and worked 32 hours a week while on TX. It is a cycle, feel bad after shot, and slowly come out of it over the days ahead, feeling not too bad by mid week and the next cycle begins. People doing hard manual labor need to evaluate working situations and alternatives. There is NO good time to do TX, you just have to.

4) Get a support network going to help you through TX.

5) Lower the bar on your life, plans, activities, and put your all into TX.

6) I can't say this enough: The meds are your weapon, but YOU are the warrior. It is a fight involving you and to win, you can't just be "along for the ride". Fight Brother.

7) Mind over Matter. I used boxing as my motivation, visualiztion, mental imagery, warrior over opponent, good over bad, etc. It 'effin helps and works (in conjunction...)

8) Become Informed. You are your best mentor. Not bragging, but I probably know more about Hep C than my family doc now.....

I will go over the above in better detail in further posts... Clay, feel free to PM. I will send you cell# if you like.

 

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A Peach Supreme



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  posted on 2/18/2008 at 03:36 PM
Also, people beat themselves up with; "How did I get it?" while a point of discussion and curiosity, it is IRRELEVANT. And get ready, rude, nosey folk will ask you often "How did you get it? While really asking: "Did you shoot dope? I use that as an opportunity to inform them of the varied ways of transmission and pre 92 thing and size of epidemic, etc.....

 

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Ultimate Peach



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  posted on 2/18/2008 at 04:19 PM
quote:
Clay, I am awfully sorry to hear that. It is not a death sentence or the end

Thanks Tony. I know it's not a death sentence but it sure has pissed me off, along with a double wammy of being told I'm also a diabetic.

Please do pm me your cell #. I'd like to talk to you.

 

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  posted on 2/18/2008 at 04:23 PM
quote:
4) Get a support network going to help you through TX.


I almost fee like I have no business posting here, but after reading this I thought I'd chime in. And maybe, Bird, you can offer some further resources for the support side.

I started dating someone right after they had finished a complete TX treatment, which in retrospect was probably not a good idea on his part. TX completey drained him and he was not able to work through most of the treatment. I didn't know this until awhile into the relationship. He just told me that he had been ill and was now doing much better. I think he was just trying to get some normalcy back. He had very little support and was very limited in what he shared with me. I tried to hang in there and be supportive, but didn't have the knowledge to a good job at it.

Whatever reasons he had for not being open with me and others about Hep C and TX, I think hindered his recovery. In the end we broke up and it really stemmed to all of this. It makes me sad to think that he would not allow me and others to help and kinda suffered needlessly in silence. So set up a support team and make sure they have all the info they need to help.

Clay, best of luck to you, your support team can start right here.

 

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A Peach Supreme



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  posted on 2/18/2008 at 04:24 PM
Sometimes I forget the simple things:

One typically finds out about having Hep C after donating / giving blood, or after a routine physical.

After a preliminary family doc consultation, they will refer you to either:

1) A Gastrointerologist (an innards doc)
or
2) An Infectious Disease Doc (IMO better than #1, as they are more specialized in this).

If you don't get a feel good from specialist, see another! But remember, you are not paying for personality, you are paying for expertiese.....

Make a list of questions.

Research what you can on net and in print, but be careful, misinformation exists a plenty on net, Stay with established MEDICAL sites, NOT alternative product sites, for example.

hivandhepatitis.com is a great site (doing addy on memory, I believe correct).

But make a list, and bring and ask doc. Get your monies worth on visit.

Support sites (Philzone Hep C Forum as example) can be better than your doc on dealing with TX. After all, your doc probably has not done TX themselves. But not to say they do not know, they do. There are sides (effects) and support groups are handy in helping deal with them.

 

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Zen Peach



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  posted on 2/18/2008 at 04:27 PM
Hey Clay. Hang tough, brother. Definitely listen to what Tony says. He's been there, fought the fight, and kicked some ass. I'll be in your corner if you need me.

 

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A Peach Supreme



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  posted on 2/18/2008 at 04:31 PM
Clay, I will (PM)

I remember when I found out, and even my mindset through first TX. I had the WRONG mindset. I was a VICTIM. I was soon to be DISABLED. I put myself in a mental box instantly. WRONG!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Bad Move!

Take control, and Clay, that anger is GOOD!!!!!!!!!!!!!!!!!!!!!! Channel it to the fight at hand. Don't get depressed and woe is me.... Stay Pissed! But don't go to the why me, bad fate, bad luck thing. Stuff just happens, maybe our doing, maybe not.

I really went in a wrong mental direction instantly and I hate to see that. I read people like on the Philzone instantly looking into Social Security disability and resigning themselves to a lesser thing without a fight. You are disabled when your liver hurts so much you can't stand it (that is a sarcastic joke of sorts). Until then, you are a dragon slayer.

 

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Zen Peach



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  posted on 2/19/2008 at 02:45 PM
quote:
Also, people beat themselves up with; "How did I get it?" while a point of discussion and curiosity,
quote:
it is IRRELEVANT
.
AMEN. The important thing is to do something about it.

Thanks for bringing this back, Tony. I have a few friends who are at various stages with Hep-C - one, like you, has finished treatment and he's doing great; another has finally come to the realization that she needs to face the disease instead of ignore it (plan on sharing any information you provide with her); the third has chosen to continue ignoring things and remain in party-hardy mode (will also share info with her and hope she listens). As with many things, the voice of experience (support group, information from survivors) can be as necessary a part of successful treatment as the Dr./med combo.

Clay - glad to hear you are have been made aware that these conditions exist in you so that you can formulate a plan of attack and begin taking steps to getting your health on track...the diabetes as much as the Hep-C. Positive thoughts going out your way and I'll be keeping the focus on your recovery!

 

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  posted on 2/19/2008 at 03:51 PM
prayers to you Clay

 

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A Peach Supreme



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  posted on 2/19/2008 at 03:59 PM
Lost one of my best friends to it in November, he fought hard for 7 years and in the end needed a transplant that never materialized (that's a whole new thread). He never lost hope and did many of things mentioned above but he was just too far along. I will mention that if you have any idea of when it happened from needle use, contact the people that you hung with back then and tell them to get tested. Its the only good reason to look back. My positive healing thoughts are with ya brothers!

 

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  posted on 2/19/2008 at 04:41 PM
prayers,Clay---listen to Bird72--he really knows his stuff--patients with particular illnesses often know way more than the docs...hang in there & i'd really follow his advice--wishing only good for you,Clay--you don't have a clue who i am nor does it matter--i'm grateful to you for the gift of the music ya put out there!! so get well & back to work....on the music !!
 

Zen Peach



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  posted on 2/19/2008 at 05:44 PM
quote:
I just found out friday that I have it full force. And now I've got to decide what I'm going to do about it? If I had to guess I'd say it's probaby from shooting dope back in the early 90's?


mighta been that long weekend with Pamela Anderson.....


best wishes to all of you, and Tony - thanks for bringing this back up.

 

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  posted on 2/19/2008 at 06:33 PM
Clay, I'm keeping you in my thoughts and prayers. God Love You.
Get better soon.

 

True Peach



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  posted on 2/19/2008 at 06:48 PM
Prayers and thoughts for you Clay.....

 

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A Peach Supreme



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  posted on 2/19/2008 at 07:52 PM
Thinking of you Clay. Listen to Tony. He's the real deal on this subject. Best of luck to you on the road ahead.
 

Ultimate Peach



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  posted on 2/20/2008 at 10:18 AM
I do very much appreciate all the kind words as well as the pm's I've recieved.
I've had the opportunity to talk to Tony twice. He is one hell of a nice guy that has agreed to take me under his wing. I feel like now the battle is have way over.

 

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  posted on 2/20/2008 at 10:21 AM
Yes, Clay my thoughts and prayers are with you.... You came to the right place , Tony can guide you along , help with questions you have, and give some great direction..with a good dose of peace of mind....

God Bless you and Tony....

 

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Zen Peach



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  posted on 2/20/2008 at 10:34 AM
Thanks for starting this thread, Tony. I've wondered how it all worked out for you, and I'm happy to hear your good news.

Clay, you've got a battle ahead of you, and I can't help but notice the timing of Tony's thread, just as you need it.

I think you know there are a whole bunch of us that will do whatever we can to help you with this. Just let us know. In the meantime, you can rest assured that many people are praying for your full recovery.

 

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  posted on 2/20/2008 at 11:29 AM
Tony, if you think appropriate, could you speak of how the treatment can cause personality changes?

I've seen some of this....I understand it can be pretty bad. Folks need to be extra tolerant of folks in treatment. I don't understand all of it, I just know it's a factor and they get past it after the medicine.

Clay, you've made a lot of friends around this site over time....just by being yourself.
Wishing you the best. They're gaining on this thing all the time. You'll come out tougher than ever. Maybe lead the way for others. You can do this.

 
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A Peach Supreme



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  posted on 2/20/2008 at 12:32 PM
Treatment does affect personality, emotions, etc. Very often, usually, physicians recommend taking anti-depressants in conjunction with treatment. My first treatment I did them, kind of thought they didn't really do much, as mild depression still existed. So when I tried TX the next year after relapsing (too soon in retrospect, I tried it without anti-d's, much to my docs disagreement. After 12 weeks on TX, I went into a horrific black hole, the likes of which I never experienced. I couldn't (wouldn't) get out of bed, started evaluating pros and cons of life vs not, saw zero hope for anything...... doc saw this and pulled me off meds ASAP. There have been suicides on TX, not many, but it is something docs look for, severe depression. So when I went on my serious, kick butt or lelse TX the next year, I went on anti-d's along with docs mandatory requirement I do TX AND see a psychologist while on it. The psych saw me every two weeks for a few times, then every month, then every two months on TX, as he saw I was doing fine, mentally.

So, I HIGHLY recommend anti-d's on TX. I also recommend sleeping pills. One of the cruel ironies of TX is fatigue all the time, coupled with insomnia, go figure.... and minimal sleep with no rem sleep adds to depressive issues, so get Ambien if needed. Try withought but DO NOT HESITATE to ask for them. Yes, after TX, you will need to wean off anti-d's and sleep pills, so be it.

I give this analogy to mental state on meds..... it is like wearing gray tinted glasses ALL the time. The sky isn't as blue, colors aren't really there, it is kind of gray. Remember, the colors will come back, ride it out, build comfort zones in your world, meditation, scents, positive graphics, positive thoughts, words tacked up. etc, etc.... and make the gray just a symptom of the war, and ride it with a mindset of you are far tougher than it.

I went angry many times on TX. I was hard to be around often. I learned to go with it. I literally vented at the sky, shook my fist, whatever, let it out..... and I vented inappropriatly here on this site at times.....

I literally don't remember much of TX, it is also a "fog" like mental state. Clarity goes out the window. I made lists of daily tasks at hand, and checked stuff off as done.

I am not trying to scare off, it is a fine line between awareness and horror stories. Docs should do a better job preparing people for the sides, because if you know, you can psyche for it.

People need to be told to toughen up, be a warrior, yes it will kind of suck, but the payoff if successfull is beyond your dreams

God Bless All, I get emotional thinking of all the warriors, ex warriors, and scared souls who just don't know the road ahead, God Bless every one of you. I have to go, eyes get misty, sorry... just being honest.....

 

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