my life w/ hcv

my first experience w/ hcv occured in the spring or early summer of 1976, while i was stationed in germany… i was sick w/ the typical symptoms of acute hepatitis, and was sent to the hospital for 3 wks… treatment consisted of bedrest, and weekly blood draws for labs. when your enzymes were normal, they pronounced you cured, and sent you back to full duty. as early as the early 80's, i had a suspicion that something wasn't right w/ my liver, but dr's kept telling me i was fine…. i knew something was wrong, i didn't have the energy a man my age should have… i turned hypoglycemic, out the clear blue, in approx '91… another trip to the dr, and another "nothin wrong w/ you!" from the va dr, and the obvious insinuation that i was just there to get drugs… during the '90s, my energy continued to drop.. an 8hr day in the shop left me needing a 2-3hr nap in order to function at all… also, i became very concerned about my judgement… i just wasn't able to make the quality of judgements i knew i was capable of… i closed my business, and went to work for someone else… between my questionable judgement, and my exteme moods, i began bouncing from bad job to bad job.. my personal life went in the same direction… i started dating the first woman i'd wanted to marry in 20yrs in '99.. after a very short romance, my "character flaws" of low energy, depression, lack of stable work history, etc were too much for her, she broke it off…. i continued dragging myself to and from work each day, but i was able to do less and less when i wasn't at work…. i not only stopped most of my hobbies, but my house keeping was showing the effect also… it was getting to where it was all i could do to work 8hrs, make it home safe, and sleep till i had to work again….after a couple of other major losses in my life (lost everything to a flood, then my old dog and companion died of cancer) i was barely able to put one foot in front of another each day… one day, a friend at work told me my cough was soundin bad, and that i should get it checked…i figured if nothin else, i could go to dr and get some time off work… the dr told me i had pnuemonia, pumped a couple of gallon sized syringes of something into my rear, gave me a handfull of pills, and said come back in 2 wks.. i went back to work, and the cough cleared up…i went back to see her, and she said "i bet you feel alot better"…………… i told her no, i didn't feel any different at all, that i'd had pnuemonia 3-4 times before, but i didn't even notice this one……… she asked how did i feel, and i told her…..all of it….after about 45min, she said she wanted to run one test, but that was all she knew to do…………….. she called me at work on 3aug'01 and told me i tested positive for hcv, and she wanted to see me immediately……… she gave me some pamplets, and some web addys, and a referal to a gastro specialist….. from what i read in the pamplets, the diagnosis meant trying the only iffy treatment, or transplant, or die… not a real pretty picture

i went to see the gastro, a specialist w/ hcv.. he ordered all the blood tests i needed to find out where i was at, and also scheduled me for a biopsy….. he explained the need for the biopsy by saying that even if i was positive for hcv, and had elevated enzymes, that doesn't mean hcv is what's causing the damage.. there are lots of other ways and reasons for elevated enzymes… however, the biopsy would be a gold mine of info on my situation, and would be necessary to make proper decisions on what we were dealin w/…. i agreed, and an appointment was made for tue 7am, 12sept'01… the good dr levinson was in miami for a liver conference that weekend, and when he came out of seminar at 2pm on monday 11sept'01, there wasn't an airplane in the sky in america….no bus tickets were available, no rental cars, no way to get back to memphis…. i heard that he and several other drs from here got a cab, and drove to the closest auto dealer, and bought a new van on their credit cards and drove home all nite to be there for patients…. the biopsy was a breeze, i've hurt alot more from bumpin my leg getting up from my desk….

my geno is/was 3a, i was grade 2 inflammation, stage 4 cirrhosis on biopsy…also seen on the biopsy was moderate severe fatting of the liver (steato hep), and the very begining stage of iron overload disorder…all 3 of these things can cause elevated enzymes and damage, but only a biopsy would show them, and which was doing the most damage..

the good dr levinson said he wanted me on the "new" pegintron combo that had just come off trials…and, he looked me in the eye and said "i can help you"… he has never gone back on his word to me…

so, after a few hiccups gettin my meds, i started tx the weekend before thanksgiving…. i was open and honest w/ my boss at work, and had recieved complete assurances that i was a valued member of the team, and i shouldn't worry about anything but getting better so i could come back to work…… i lasted at work for 2 short 3day weeks, then i was fired the first day i missed…. i carried my ins on cobra then, and kept w/ the program…… i was pulled off treatment 4 times before i finished my 26wks..once for cardiac arrythmias, once for my wbc's dropping to the floor (my neuts were 0), once for when my boss canceled my ins and didn't notify me, and once for a periodontal abcess from the low white cell count…….. i've never been sicker in my life than when i was on treatment…. i'm a bachelor, and was living alone… i couldn't tell what day it was, or whether it was afternoon or morning.. i missed dr appointments…. i got so bad i couldn't keep myself fed and watered, much less keep a house… i luckily had family i could stay w/ while i tried to finish…. the fevers and chills were beyond explanation, the mental fog reduced me to a shuffling, mumbling old man of 46…. from what i'd read, and what my test results were, i felt i was in a death match w/ this virus, one of us was going to die before it was over.. i managed to finsh the 26wks of mono therepy w/ peg, i had been pulled off the rebatol when the cardiac probs started, and was clear….

approx 2 months later, i woke up and felt odd…before i got my first cup of coffee, i knew i had relapsed….once you've had the flu, you know it when you get it again….and after dealing w/ this virus for 27+ yrs, i knew what it felt like…… so, back on the program…this time w/ rebitol….. after 8wks on the treatment, the dr told me he was pullin me off, i wasn't having a bio chemical response, that i'd had a breakthrough (the virus mutates so the interferon doesn't work).. i had told him and the nurse on my 4 or 6 wk visit that i had felt something major occur, but didn't know what it was… i insisted on a pcr to see if i had responded at all this time… suprise! i was clear!!!…but, i wasn't getting a bio-chemical response…my enzymes were still sky high….but, since i was clear, he decided to continue and see what happened….. at some point along the way, i had asked for an ammonia test, the dr grumbled, but ordered it…..it was above 3x normal range…. that made him order an endoscopy to see if i had any other signs of portal vein hypertension…. i had tiny varices, and gastropathy of my stomach.. so, we added more meds… a buddy talked me into going to bahamas w/ him to his condo, said i could lay on the couch there, or on the hammock as well as a couch in memphis…so i went…he even talked me into doin a couple of scuba dives a day…easy, drift dives… i had blood drawn the monday after i returned for labs…dr levinson called me at home as soon as he got the results, wanting to know what in the heck i'd done!!!!!… i told him i'd done 12 dives in 6 days… he told me the effect on my labs was "marked and dramatic"…my enzymes had lowered by 2/3 and dropped my ammonia lower than i've been able to get it w/ diet and lactulose….and, i felt tons better for 4-5 days… not long after that, my cobra insurance ran out, and i was forced to go to the veterans hospital for help…. i'd had terrible experiences there, and wasn't looking forward to it….. i was wrong!!!….i got a fabulous primary dr, and my liver dr is tops……

the 2nd treatment was just a bit more than my liver was willin to put up w/…. i was slowly slipping into liver failure…. dr waters was pushing me to get evaluated for a transplant, "just in case"…… i had reached a meld 9 or so and was sinkin fast, and i just didn't want to face that decision, so i focused on getting through this 2nd treatment…… i finished my 2nd round in aug of '03, and i was proclaimed an sustained responder in mar of '04, and after about a yr off treatment, i was starting to feel somewhat better…. then, i started having problems from all the meds i had been on….. i started having neuro problems, a bad tremor in just my right hand, and severe leg myoclonus (legs twitch during sleep, disturbing brain's deep sleep cycle)….. they're not sure if that's from the peg combo, or a stomach med i was on… then came the pancreatitis attacks, probably from a diuretic i'd been on a long time for the edema… they can be very painfull, but the danger of them is if you turn chronic, your life expectency suffers greatly….. while looking for other gastric problems w/ a colonoscopy, they found a possible lesion, a known side effect of peg combo…if i'm lucky, it's only a diverticuli…i don't know what dealing w/ diverticulitis is like, but i don't like the sound of it………

has it all been bad?… no, i can honestly say that all the changes have not been negative…true, i'm no longer an active participant in life, but there has been good come of this…. i finaly got help for my hcv related depression and ptsd… and, dealing w/ hcv has greatly changed my priorities in life, and what i think is really important… it has taught me that it's about living, not just life.. and, it's shown me a side of people i'd never seen before, both good and bad….

i became a regular on several hcv chats online not long after being diagnosed… i had so many questions, and i found so many answers…. help was freely shared w/ me, by people who were in worse shape than me most of the time…. that was a real eye opener to me… i continue to visit the chats, to pass along the help that was so freely shared w/ me… it's not much, but when you've been basicly housebound for over 3yrs, you have to do something to feel productive, and to have contact w/ people and peers……

my best guess on how i got this is all the blood based vaccines i recieved during my army time…dr levinson stated emphaticaly that i'd never had hav or hbv, but had had hcv all this time…. i have no other risk factors for this, and many of the vaccines i recieved were made w/ blood products at the same factory that made the contaminated flu vaccine in the news in the fall of '04…. the more i look at how the blood industry handled their business, the more disgusted i get….. i've wondered why most all of the folks that don't know where they got it are all of the generation that recieved the mass innoculations as kids in school… i consider the epidemiology of geno 4 to be a obvious paralel and explanation of the whole epidemic..