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Hepatitis C Main Forums => Living with Hepatitis C => Topic started by: maxpuppydaddy on February 21, 2015, 05:07:12 pm

Title: 40 Years with Hep C; about to start new treatment
Post by: maxpuppydaddy on February 21, 2015, 05:07:12 pm
I'm new here, and have never shared my HCV story. Today, I'm awaiting CA State approval to begin new HCV treatment protocol, which will cost $95,000 for the 12-week treatment. I am type 1A. I'm a straight male, with multiple children, who has been in very long-term monogamous relationships with a spouse or lover...less than 20 partners in my lifetime (so far...)

Backstory-
1974: When I was 20, I foolishly overrode my own scruples and set aside my aversions and distaste for anything related to injecting drugs, after being introduced to some new "friends"....a couple that my future wife had grown up with. This meant partying with them on the weekend........as they were "functioning" white-collar/blue-collar heroin addicts. (Grocery Produce Manager and Dental Assistant wife.) At first.....I politely declined doing anything but trying heroin by snorting, but over the course of the next half-dozen Friday or Saturday night parties.....despite ALL of them warning me not to tread down the path they were taking, I asked for and accepted someone elses needle. Less than two months later, I made perhaps the smartest decision I ever made as a young man, had a "moment of clarity", and seeing that my house was being broken into and our stereo, cash and possessions were mysteriously disappearing.....I walked away from  ever seeing those folks again...as I KNEW I liked the "high" and would become a full-blown heroin addict.
Looking back.....and despite what has happened, I think I am VERY lucky...because that all happened about 3 years before the first AIDS victims started appearing in our local area the S.F. Bay Area. OF course, in 1974...I had no idea I had contracted anything...

1990: After donating 5 gallons and 3 gallons of blood to the Red Cross and Stanford, dutifully each 6 weeks over many year........ received a note from the RC that my donation had been found to contain "non-A, non-B" hepatitis.and that I would no longer we participating. I was shocked...and was strangely much MORE angry that one of things I felt good about doing was being taken away than a little worry about a disease I had never even known I had. I immediately had a liver biopsy.....which showed chronic inflammation but no cirrhosis. I was a lifetime pot smoker but had long since given up any other recreational drugs, and despite being a garbage can for anything else, drug-wise from age 16 to 20, I never had really liked alcohol.

1996: Went to an AA meeting. Got sober after a few early "slips" (quit smoking dope) and religiously tried to avoid Acetaminophen or anything I knew was hard on the liver, as evidence of Tylenol's acute toxicity was just emerging. I had continuing high viral load numbers, but no outward physical symptoms of HCV.

2008: I mysteriously started losing weight, and despite cramming 10,000 - 15,000 calories per day and innumerable medical tests looking for cancer, etc. , I continued to drop from 190 lbs down to 118 lbs over the course of about 5 months.....I was advised to get my affairs in order, and contacted Hospice Care. My lifetime doctor suggested trying Interferon treatment as we guessed that perhaps my liver had just stopped producing glucose.....I laid in bed for half a year, and my weight stabilized and then slowly, started returning. The weight ad been lost from every muscle group (not enough glucose sent to muscle fibers=no new muscle cells being created=dead muscle cells not replaced=rapid weight loss). I survived, but the Interferon took my already poor-condition teeth, and it took a couple more years to regain my old "fighting shape."

2014: After being placed on Disability (again!) because I just seemed to want to sleep 16 hours a day over the last 12 months...my viral load test indicated the disease had returned...13,000,000 count on the test.

Now: I am expecting to be rejected initially for coverage by the State for the new 12-week treatment protocol, but my new HCV doctor said this is to be expected with the ridiculous and exorbitant "rich folk's only" cost, and that he will "make it happen" (wink) anyway, somehow. That was yesterday.

Future: Looking forward to being healthy again.....really healthy, and working another decade. As far a transmitting the disease after it was discovered in 1990...none of my kids or spouses ever were infected; I tried to educate myself immediately and for 24 years I have followed all the safety precautions and pre-tested myself and subsequent new lovers prior to engaging in sex...without exception. While being bedridden 2008-2009 and due to a lifetime of detesting T.V. commercials, as I did the IF treatment, I developed into a classic movie "expert" after spending countess hours half-asleep with TCM on the boob tube....so that's something, I guess.

I will report side effects here when the treatment starts in a couple weeks (hopefully). I have watched the stigma, the hopelessness, the suffering, and the dashed hopes of all HCV patients over the past 24 years.....I await the day when this new treatment (and others) will become mainstream and cheap, and  and the horrors of Hepatitis C sufferers can finally end. Along the way, I saw many others lose the battle, or continue drinking, and succumb; they are gone now but we remember them nonetheless.     
Title: Re: 40 Years with Hep C; about to start new treatment
Post by: skycatcher on February 22, 2015, 03:13:00 pm
Hello MaxPuppyDaddy! 
Thanks for sharing your story.  Very powerful story.  The choices we make in youth -- especially when all of society was reinventing it's self, as what happened in the sixties and seventies, should not be the thing that takes us to our grave. Hope you get the meds soon.  It is ridiculous people have to wait. I am waiting right now for a green light from my insurance co. too but this is the first time I have given it a go.  Good luck Friend.

    P.S.  Your writing is powerful thanks again for sharing.   skycatcher
Title: Re: 40 Years with Hep C; about to start new treatment
Post by: sapphire101 on February 22, 2015, 06:39:10 pm
One of the many things that I like about this forum and what sets it apart from all the others out there is the level of intelligence of the conversation and our willingness to share our stories and our interest in each others stories.
On any other communication source I use  it is all about minimalism; the sound bite or the quick pic and for some reason here when I see a long entry I settle in and happily read every word.
Thank you Maxpuppydaddy for your story and you will start your treatment very soon and have the virus finally cleared from your system and with this clean sweep you can also let go of all those past regrets and what ifs.
We are all a product of our time and our cohort group. With ours came much change and with that change we had great good and also some collateral damage of which you were a part. That is almost over!
Title: Re: 40 Years with Hep C; about to start new treatment
Post by: maxpuppydaddy on February 23, 2015, 09:38:06 am
Thanks for the kind replies. I've been very open with my family and close friends since Day One in 1990 when I realized I was infected...but had never shared publicly about my condition.

There are some hard things about Life that you learn along the way as a HCV suffererer- your eyes get opened about human trust, human fear, and self-loathing.........and the personal regrets and self-doubt are impossible to avoid.

-No matter how much we learn about Hep C, or how far science advances in treatment, there will always be some folks who will be terrified and will shun or avoid you once they find out you are carrying the virus. You can't change it..it is what it is and you have to respect their beliefs, feelings, and the character-assassination that you might experience. For me, dealing with those personal losses of friends or acquaintances was part of "owning" my past behavior. Let's face it...many, many folks who find out that you CHOSE to inject heroin or cocaine into your arm will not view you favorably.....and we human beings all have been conditioned to mistake BEHAVIORAL problems as CHARACTER flaws.....even though behavioral science tells us that behavior is a very poor, usually wildly inaccurate indicator of a person's true character. It's just how we are wired- we JUDGE others based on their observable behavior...and usually do so to stroke our own egos or fell superior.

-We have so, so many folks "mysteriously" infected with HCV that have not been able to "cop" to their past behavior that caused the infection...it's understandable, but it is part of why there is still some myths about how the virus is communicated out there. That is why "coming clean" is important...you may help others come forward and clean up the science end of this battle.
The evidence is pretty clear: If you have no tattoos....never was stuck by a needle as a nurse........never shared toothbrushes, razors, nail clippers....etc. with an HCV carrier.......never had rough unprotected sex with an HCV-positive lover to the point of blood-to-blood contact occurring.......well, yeah, it becomes likely that you have a past injection-drug story you haven't come around to admitting...to yourself, first...and then to your doctors. It is VERY hard to do....talk about personal mistakes....but trust me, afterward, you'll feel better. It will begin to release you from that shame you are carrying. Your loved ones will understand, and come to respect you.

Anyway......Sapphire and Skycatcher.....thanks much for welcoming me. Looking forward to learning from the other folks here who have chosen to share their knowledge and experiences.....knowledge that DOES actually save lives. 
Title: Re: 40 Years with Hep C; about to start new treatment
Post by: BubbaT on March 01, 2015, 11:35:06 pm
Hey max, glad you made it thru!
We're about the same age with a similar story, one of the hardest things for me was
Forgiving myself, when I found out I had the dreaded virus I had a hard time not blaming myself, I have learned over the yrs, I'm 57, that God gives second chances and I'm glad he does, cause if he didn't, I wouldn't be here today.

I've been living the past 20 yrs with this beast eating away at my liver but, I have hope, whether I live or die it's gonna be alright, cause I have hope that the God up above, I call him jesus, he's cleared me on all counts and I can deal with the shame and guilt, cause the penalty has been paid.

To all those who suffer because they made a poor decision or choice and are feeling ashamed or angry, I have compassion for you, I did it too.

I start the harvoni this week
F4 a3




Title: Re: 40 Years with Hep C; about to start new treatment
Post by: badbradley on April 03, 2015, 09:20:44 pm
 I've been searching the forum for this for a while. What a great day to find this and bump it up! I found this whole thread to be an interesting read.  Thanks to all who posted here.
Brad
Title: Re: 40 Years with Hep C; Mid-Treatment Report
Post by: maxpuppydaddy on August 21, 2015, 09:45:30 pm
Got 30 day test back about 10 days ago...UNDETECTED!
Wow!
March 03 this year was when my Doc advised to get affairs in order; 6-8 months left
Liver quickly progressed to Stage 4 fibrosity, and starting to evidence cirrhosis

Now, feeling better for the first time in 5 years, everyone says "you have color in your face!" and my ex says "you don't look Zombie Gray anymore"........so it is ALL roses, people!

I just took 42nd Harvoni pill......only 42 more to go.

My Harvoni Side Effects (daily)
I get a mild throbbing and heat-feeling in the temples after taking the pill (like you are outside and it is starting to get hot when you're tired-your head throbs), followed by mild exhaustion. I can sleep a couple hours and wake up, and the feeling has passed.

However, I do "feel" like each pill is taking a "toll" on my body....I guess I associate  the battle going on in the bloodstream as my body being under siege by the medicine.

I don't obsess about what Harvoni is actually doing...I just take the pills and try not to think about it.

I will be relieved when the 84 days is over. I want to get back to work...Do something...live again.
I will report back after treatment ends and when I get post-treatment Test Results.

Title: Re: 40 Years with Hep C; about to start new treatment
Post by: gnatcatcher on August 21, 2015, 10:41:25 pm
. . . 1990: After donating 5 gallons and 3 gallons of blood to the Red Cross and Stanford, dutifully each 6 weeks over many year........ received a note from the RC that my donation had been found to contain "non-A, non-B" hepatitis.and that I would no longer we participating. I was shocked...and was strangely much MORE angry that one of things I felt good about doing was being taken away than a little worry about a disease I had never even known I had. . . .
maxpuppydaddy, that is something I can really identify with. It has become a tradition in my family, and spouse's as well, that when we no longer need our bodies, they go to a medical school so future doctors can practice surgery and learn anatomy on them. I had signed the donation papers before I learned that I have Hep C, but a few years after the Dx, I read that medical schools, for the safety of their students, won't accept bodies that contain Hep C. Like you, I was more angry about being denied the chance to give than about the Dx.

People on this forum seem to accept that however we got Hep C, we're in the same boat now. We wish everyone well, celebrate each SVR, and grieve each relapse (mercifully, far fewer of those than in the early years of Hep C treatments). maxpuppydaddy, although on February 23 you expressed doubt, there are members of this forum similar to you in age who never tried drugs. Some of us were simply far too risk-averse. You've experienced what it feels like to be stigmatized. Please don't stigmatize us. Thanks.

Congrats on the UNDETECTED, and Bon Voyage.

Gnatty
Title: Re: 40 Years with Hep C; about to start new treatment
Post by: maxpuppydaddy on August 21, 2015, 11:50:42 pm
Appreciate the kind words. I did not mean to stigmatize anyone. I meant to encourage folks to be open about behavior...and put down that bag of shame, if it applies.

It sounds like you took offence somehow, and it became important for you to point out the fact that you and many others are/were not drug users.

I'm glad for you that "there are many of us who didn't use drugs."
We invariably all make mistakes, but the mistakes made are often quite different.

I suppose there are some folks who honestly "do not know" how they became infected with HCV...and those mystery infection scenarios will likely remain a mystery, to the medical establishment and research folks.
 
We do live in an America that is a primarily paternal, hetero-normative, neo-theistic culture...and that means we see a lot of shaming and blaming being applied as a means to raise children and by adults to character-assassinate others or as a means to manipulate. Once we evolve past the negative results that always come from shaming, we'll be a better species.

Anyway......if you never used, many, many blessings be upon you. Have a great weekend.
Title: Re: 40 Years with Hep C; about to start new treatment
Post by: Scoutdoy on August 21, 2015, 11:51:57 pm
Good words gnatcatcher.  We all have something in common. That is why we are here.  I really feel for people who have gone through past therapies that the side effects were unbearable. I have tremendous respect for those of you out there who have not given up and kept trying to do whatever it takes to get cured. I joined this forum because no one around me could possibly understand the feelings of having this dreadful disease and it was very lonely. I truly felt I could not discuss it with anyone because of the stigma that goes along with the disease. One thing I have realized from discussing and reading posts on here is that I almost feel somewhat selfish about being angry about "why me" because there are so many people who have gone through much more than me, who are in much worse shape than me, and are not giving up.  I don't give a rats ass how anyone got the disease, it is irrelevant. I have been dealing with this for almost 30 years and until recently did not realize how lucky I am that I am in the pretty good condition that I am and that I was fortunate enough to have insurance that covered the treatment. I have learned so much in the few short weeks that I have been on this forum. Thank you all for sharing your stories, and to you gnat, have you ever experienced weird energy boosts since you started the Harvoni? I kind of feel like I am on speed. I don't know if it is a side effect and will only last a few days or if it's the virus leaving my system...I have actually gotten a prescription from my doctor(the lowest dose made) of Xanax to bring me down a bit so I can go to sleep at night
Title: Re: 40 Years with Hep C; about to start new treatment
Post by: gnatcatcher on August 22, 2015, 05:06:01 am
Appreciate the kind words. I did not mean to stigmatize anyone. I meant to encourage folks to be open about behavior...and put down that bag of shame, if it applies.

It sounds like you took offence somehow, and it became important for you to point out the fact that you and many others are/were not drug users.

I'm glad for you that "there are many of us who didn't use drugs."
We invariably all make mistakes, but the mistakes made are often quite different.

I suppose there are some folks who honestly "do not know" how they became infected with HCV...and those mystery infection scenarios will likely remain a mystery, to the medical establishment and research folks.
 
We do live in an America that is a primarily paternal, hetero-normative, neo-theistic culture...and that means we see a lot of shaming and blaming being applied as a means to raise children and by adults to character-assassinate others or as a means to manipulate. Once we evolve past the negative results that always come from shaming, we'll be a better species.

Anyway......if you never used, many, many blessings be upon you. Have a great weekend.
And to everyone who has used, many, many blessings be upon you, too.

maxpuppydaddy, thanks for your very thoughtful reply. Yes, we all make mistakes -- I've made plenty and assume I'll make lots more. And I certainly can't claim any credit for not having gotten sucked in by drugs, since it was fear that kept me from trying them.

I'm glad you were simply trying to encourage folks to put down that baggage of shame. All I was trying to do was nip in the bud anything that might segregate any segment of this forum community. However we got Hep C, one thing that unites us is that we have all had our characters impugned. And Big Pharma and the insurance companies are already damaging our unity by denying or delaying treatment to so many Hep C sufferers.

Please, everyone, whatever choices you made that in retrospect were suboptimal, don't "should all over yourself." That was then, this is now, and making mistakes is how we grow. To life!


Scoutdoy, great post. As you know, I replied to your question about energy boosts in the thread you started called "Week 4 Harvoni feel like I am on speed."
Title: Re: 40 Years with Hep C; about to start new treatment
Post by: Scoutdoy on August 22, 2015, 08:45:36 am
LOL ...I saw that...you posted that one while I posted the one on here.
Title: Re: 40 Years with Hep C; about to start new treatment
Post by: Corey on August 22, 2015, 10:54:03 am
To maxpuppydaddy.  I have to admit that I am a bit set ff by your post and although others have addressed it in part, I feel compelled to add my own experience and bias:

"The evidence is pretty clear: If you have no tattoos...."....etc..........."well, yeah, it becomes likely that you have a past injection-drug story you haven't come around to admitting...to yourself, first...and then to your doctors."

When first diagnosed in 1998, there seemed to be no plausible reason that I should have Hep C.  No tattoos, piercings and no drug use.  Nope NOT EVER!  Nonetheless I had to put up with a lot of attitude from the medical staff who suggested (rather strongly) that I experimented with drugs in college.....Again.  Nope, NOT EVER! 

I made a list of possible routes:  I had been trained as an EMT in college, was first on the scene at a bad accident as a good Samaritan later in working life.  The victim bled all over my hands, spat out blood and broken teeth as I stabilized his neck and waited for the rescue crew.   I had surgery in 1976 where I remember being told that they did not require any blood.  Nonetheless, I tracked down the 20 year old records from the surgeon who had long retired and found that I actually had been given a unit of whole blood and a unit of PAC cells (which can come from multiple donors). 

I say this because I just don't think it worth adding to the stigma associated with HCV by assuming that many of us have a drug history that we don't admit to. Why give ammunition to the insurance companies to deny coverage due to assumed risky behavior?  Inoculation guns were used in the military, women were routinely given plasma following child birth, hygiene practices at the dentist's office were quite different pre-AIDS.  I remember watching girls in my high school pierce each other's ears with the same needle.  If I had joined in, it is likely that I could have passed on the infection.  In other words, there are lots of ways to become infected that may not immediately leap to mind that have nothing to do with drugs and some of those infected may honestly not know how they were infected. 

Good luck with your treatment.  I have just finished 24 weeks of Harvoni and waiting for my EOT test results.  I am looking forward to closing my own 40 year chapter with HCV.

Title: Re: 40 Years with Hep C; about to start new treatment
Post by: TexasC+ on August 22, 2015, 07:14:13 pm
It does not matter how we got it. It matters we all want to be healthy.
Mine most likely from a needle stick at work as a nurse or contact with blood in the ER/ICU/ . Gloves fail,  blood and body fluids are part of the work. I also have 2 tatoos from 1976.
I stopped thinking about how or why and now I focus on just finishing my treatment.
I don't judge anyone for how they got it. It is just a fact we do have it and some of us will never know exactly how we got it. Negativity and worry only make the treatment harder. Everyone makes mistakes.
Title: Re: 40 Years with Hep C; about to start new treatment
Post by: slats1056 on August 22, 2015, 08:33:25 pm
 Great posts by everyone that reflects the diversity as well as tolerance & acceptance the forums are all about. I posted before that I am a poster child for contracting Hep C except blood transfusions. BTW, the tattoos are DRAGONS!!!! Ironic , huh!! Being an ex-druggie & alcoholic I have a unique perspective . If anyone wants to stigmatize Me just remember!! When You point one finger , three more are pointing back at YOU!!!
 But the again I don't let it bother Me. That is what tolerance is all about. Not to be confused with being abusive  & stupid. IGNORANCE is not knowing , STUPIDITY is not knowing You don't know! The first is curable by learning , the latter is a waste of teaching.
 My Momma always told Me that I did not have a filter between My Brain & mouth whenever expressing My opinion!!!

 P.S. NOTICE FROM THE MANAGEMENT ! Check egos and attitudes at the front door, Everyone here is either armed or dangerous. All of them are crazy.
  Sign posted in one My favorite bikers bars from My wild & woolly days.
 If beating Hep C is the game then SVR is the Grand Prize!!!