Contributors

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HCV & ME. “J.B.”. 13th December 2013
 

The reflection looking back at me in the mirror wasn’t  the one I was expecting to see. The date was April 1981; I had just  turned 21. Normally ivory pale, my complexion was a deep, dark yellow. The jaundice signalled the onset of a virulent three-month bout of Hepatitis B.

Looking back, I believe I can pinpoint  the exact moment I contracted both strains of the virus - B and C. There  were no needle exchanges or public information campaigns in those days.  One rainy Melbourne afternoon, I allowed a friend (long since dead from  an overdose), who unbeknown to me was already infected, to inject me  with amphetamines (‘speed’). I knew I was taking a risk,  but the truth is that I just didn’t care. I was in freefall, tumbling  further and further down a rabbit-hole of my own making. A newcomer to  the big city, my childhood had been dysfunctional and  abusive. To my mind there was no reason to look after myself. Indeed, I  had no idea how. Taking speed, later progressing to heroin, it seemed I  had discovered the solution to all my problems. 

 “ Non-A/ Non-B hepatitis”. What the hell did that  mean? Living in my native country, England, by 1986, I registered at a  London hospital, to be diagnosed with a brand new sort of hepatitis,  which didn’t even have a name. There was no treatment - just testing.  That meant liver biopsies, several of them. As I was given pethedine as a  matter of course afterwards, I didn’t mind having the huge long needle  inserted between my ribs so much. Afterwards, you had to lie still on  your side for at least six hours.  

 In 1988, Hep C was officially named. The mainstream  press focussed on the more sensationalist aspects, such as innocent  people infected via blood transfusion dying. Being HCV + became my  deepest, darkest secret. Apart from family & friends, no-one knew.  Tests showed my white platelet count was low. My immune system was  overworked and as a result I seemed to contract any bug that was going  around. My neck glands kept swelling up as I fought off constant ear,  nose & throat infections. I suffered from chronic tummy ache and  horrendous PMT and period pain.  

 From 1990-94, I completed a university degree; the following year I  trained as a secondary school teacher. I was petrified that if the  world found out the truth, I would become unemployable. So, I lied.  Check, never taken drugs of addiction. Check, no to ‘liver disease’ of  any sort. In 1996, I was offered a place on a clinical trial for  Interferon & Ribuvarin. I declined. I was too busy, and there was no  way I could cope. Let someone else be a guinea pig! 

 In 2001, I needed to re-apply to live in the country  where I was raised, Australia. There followed a flurry of form - filling  in, and a medical. They tested for TB and HIV, but not hepatitis. I  lied on all the forms, of course. It was not until 2011 that I embarked  upon 24 weeks of IFN/ RBN treatment. At 51, the combination of menopause/ hysterectomy plus HCV (Genotype 3a) had  greatly undermined my health. I had joint aches and pains so chronic  that the pain woke me up at 3am every night. I had no appetite, no  energy and I was sick with infections in the winter months. Depression  & anxiety were my constant companions. I became unable to hold down  a fulltime job, after 13 years of teaching.That winter on Interferon  (injected once a week) and Ribuvarin (daily tablets) was a  horrible blur. Fortunately, I was able to claim a government pension,  but that meant living on or just below the breadline. I had no energy. I never slept longer than two hours straight the whole time. Day and night were meaningless divisions. Worst of all were the mental side-effects. My short-term memory was so bad that I  would set off for the supermarket without my purse or become lost  walking home from the local shops constantly. Along with this came the  deepest, darkest depression I had ever had, and terrible anxiety which  caused regular panic attacks and a crippling sense of dread. Thinking of  ways to end it all dominated my mind. I cried, all the time. And, in  the end, I was a “non-responder”. Although the six month ‘holiday’ my  liver had taken from the virus resulted in a huge boost to my energy  levels, the treatment had failed.
Nevertheless, I am a lot better off than many of my HCV+ compatriots. I  know of several people who have died from liver failure, or have varying  degrees of cirrhosis. Recent ultrasounds (no more biopsies) show that I  am cirrhosis-free. I never returned to teaching, a job that requires  stamina which I do not have. Since 2011, I’ve done freelance research  and consulting jobs from home. 

 After the IFN tx. failed, I spent a year or so  following the development of the new generation of HCV drugs online,  following HCV Facebook groups, and petitioning (in vain!) for Gilead  & Merck to join forces. I kept up the pressure on my  doctors to sign me up for the next drug trial. In September, 2013, my  persistence paid off when my hospital called me to take part in a Gilead drug trial.   

I am now in the last week of a 12 week trial, taking 400mg. of Sofosbuvir and 25mg. of GS5816 tablets  daily. Apart from some nausea, there have been no side-effects to speak  of. My viral load has dropped from 1.6 million to 0. My doc. says I  have a 50/50 chance at a Sustained Virological Response (SVR). I feel  pretty good except for intermittent joint pains in my knees and hips.  After fine-tuning my dose of the anti-depressant Zoloft ( sertraline) my  depression and anxiety have lifted. My appetite and sleeping patterns  are fairly normal. When asked “How are you?”, my reply sometimes takes  me by surprise: “GOOD!”. I have learnt this about myself:  that I am a survivor. I lost my best friend to cancer, & my brother  to suicide over the last three years. And I survived it all.

 My Week 24 follow-up and final blood test will take place on 29th May, 2014. Keep your fingers crossed for me!
 

Postscript: July 2015/ Week 48 Follow-up.
 

I was cleared of HCV in May, 2013. I elected to take part in a Follow-Up  Program for patients who had successfully completed the Gilead Sciences  Sovaldi Clinical Trial.
 

At Week 48, several blood-tests, fibroscans, ultrasounds and CT scans  later, I am a different person. I now have energy, optimism &  direction. The scarring on my liver has reversed itself; it hasn't  completely disappeared, but it's much better than it was. Just about all  of my symptoms are GONE. Hallelujia! The message is: Never give up  hope. 

From the perspective of a spouse 

April 22, 2002…the day that always brings back that sick feeling in my gut. I remember the events leading up to it well. 

Hi, I’m Becky. Mark, my husband of almost 26 years now was diagnosed with Hepatitis C on April 22, 2002…his 41st birthday. Mark  had been on anti-depressants for a couple of years and the doctor  wanted to do a blood test to make sure the anti-depressants weren’t  causing any harm to his liver. He put it off and put it off until he ran down to the last week of meds. I made the appointment and told him he was going. The blood tests came back showing something off, they thought it was diabetes initially. She asked him to come back in for another blood test. This test would take several weeks to come back. The doctor called on a Sunday and told us she needed to discuss his tests; we were gone for the weekend and missed the call. We knew at that moment, that something was wrong. Maybe it was diabetes, it runs on his side of the family. We could deal with that. The following day, Mark called the doctor and told her to just tell him what was wrong. She told him he had hepatitis C. I was at work and will never forget that call. My coworkers were standing around me and we were laughing. I answered the phone to hear Mark say, ‘I have hepatitis C’. I asked him what it was. He told me it was a blood disease and we were to go see the doctor and discuss options. I remember hanging up the phone and telling my boss I needed to leave. I  don’t remember the rest of that day; all I knew is that I was scared to  death and knew nothing about this disease except that Naomi Judd had  it.

The next day I began to research hepatitis C. It was a fairly new disease and all I found was horror stories and the word death. Mark’s GP referred us to a gastro doctor. A liver biopsy was done and determined that Mark was in Stage 2-3. The  doctor recommended treatment right away but there would be a 3 month  wait because there were a lot of people waiting for the new medicine,  Pegintron.

Three months later, we sat and watched a video of how to give the injection. We  had to mix a powder together with a liquid and if it wasn’t done just  right, the mixture was ruined; talk about pressure, each shot would cost  approximately $500. We both felt so scared preparing the mixture and preparing it to inject. Treatment lasted for a year. I  won’t lie, it was tough and I wasn’t the one enduring the side effects  but I was the caregiver and that job wasn’t easy either. During this time, we knew no one that knew anything about hepatitis C. No one could relate to what we were going through. We got through the year and at 3 months, Mark had relapsed. Another day that rocked our world and not in a good way. The gastro doctor recommended that Mark do treatment again. We were devastated. The treatment had taken a toll on his body but he wanted to live and said he would do whatever it took to fight the disease. So he began treatment again and was referred to a hepatologist. Several months later we went to see the hepatologist. He  recommended that Mark go on maintenance treatment which was 90 mcg of  Pegintron every week and stop the Ribavirin (the additional pill that  was involved in the chemo treatment). Because Mark was a  ‘relapser’ and was at stage 2-3, studies had shown that the maintenance  therapy would help prevent further liver damage. He took maintenance until August 2010. We  had finally reached the day we and many others were waiting for which  was the same treatment taken previously with an additional pill (the  miracle pill we called it). The doctors wanted Mark’s  viral load to be full blown and wanted him to stop all meds for a year  and get his body ready for the next fight.

He began the new triple therapy with Incivek in August 2011 and completed treatment on June 29th of this year. He  will have his three month viral count at the end of this month  (September) and we have very high hopes that he’s conquered this ugly  disease that we call the Dragon. At one month, he was  still undetectable and the doctor looked him in the eyes and said she  didn’t think that he would have to worry about Hepatitis C anymore. In  my opinion, it was very bold of her to say and scares me some; but on  the other hand, I tell myself she wouldn’t have told him that if she  wasn’t pretty confident that he’s killed the Dragon.

If you’ve just been diagnosed with hepatitis C, don’t panic. You are so fortunate to be diagnosed in 2012. Why??? Because advancements and progress in hepatitis C treatment and a cure for all are in the near future, if not NOW! There are many wonderful support groups now. People that you can talk to, relate to and are in it with you. There are many groups on Facebook and I’ve met many wonderful friends from around the world.

I have always had the firm belief that God puts us through trials for  a reason. We don’t always know the reason but I can honestly say at the  end of this ten years of being a caregiver for the love of my life, I  understand God’s purpose for me. He taught me patience first and foremost. As a caregiver for someone going through hep C treatment, I had to build a tough outer shell. I had to learn that some of the side effects that Mark dealt with made him a very angry and depressed man. I learned to love him and not ever take his anger and things he said personal. I cried with him, I screamed with him and now we’ve crossed the finish line and we love each other more than ever.

So the moral of the story is, have HOPE. You can beat this disease and advancements make cure most promising. Get involved in support groups. For me, it was important to find and connect with other caregivers. It helped me feel like I was in good company. It also helped me understand that there are many people going through exactly what Mark was going through. I found, for me personally, online groups were more positive and encouraging. Online groups helped me better understand WHAT Mark was going through. Mark  is my hero, he has an amazing will to live and has always been willing  to do whatever the doctors wanted him to do, no matter how hard, how  much pain and suffering….his life….and yours are precious and are worth  fighting for.
 

MY HEPATITIS C STORY
 

This is not a happy story about the wonders of modern medicine and how  grateful I am to be cured of a horrible disease.  My story has no happy  ending. I am still searching, not just for a cure, but for a way to pay  for that cure.  I am a former IV drug abuser who has been on methadone  maintenance therapy for thirty-one years.  I have been in recovery for  the past nine years.  I take no illicit drugs and fortunately, I am not  and have never been an alcoholic.  I am an honest, law abiding, happy,  supportive, caring and giving person with many loving friends and good  family relationships.  
 

My hepatitis history contains a series of unusual twists and turns.  I  believe I contracted Hepatitis C sometime in the late 1970s.  While in  rehab for the first time, my blood work indicated "some sort of liver  abnormality."  I did not test positive for any of the known types of  hepatitis at the time, so it was assumed that I was probably just run  down because of my drug abusing lifestyle.  A few years later, after a  prolonged period of feeling sickly, more blood work showed that although  I did not currently have hepatitis A or B, I had suffered from both and  had recovered from them.   Throughout all of this, I lost lots of  weight and had no energy, but I never suffered from jaundice or  abdominal tenderness.  
 

I started methadone maintenance in 1982.  During the next decade my life  and health improved greatly.  I went to college, worked, married,  bought cars and a home.  I made new friends and reconnected with old  ones.  While visiting with an old friend in 1993, I first encountered  hepatitis C.  She had been feeling poorly for awhile and was diagnosed  with hepatitis C.  At this time, treatment was still in the research  phase.  She enrolled in a study and was one of the first patients to be  treated with interferon.  She had horrible side effects and had to  undergo three courses of treatment before going into a remission which  continues to this day.  She and I had shared needles in our drug abusing  days, so this caused me to wonder if my "liver abnormality" from 1978  could have been caused by the then unheard of hepatitis C.  
 

Over the next few years, I was divorced, moved into an apartment and  began working at a job that was very physically demanding.  I was always  tired and lost quite a bit of weight, but I blamed this on my job.  At  this time, my methadone clinic offered a free hepatitis C test.  I was  not terribly surprised when my results came back positive.  I did not  have health insurance through my job at the time, so I enrolled in a  local health care assistance program where I was living, in Houston,  TX.  I had an ultrasound and lots of blood tests.  When my results were  all analyzed, I was told that my liver enzymes were in a low enough  range that I did not need interferon.  However, I was advised to repeat  testing every six months to monitor any changes that might indicate my  condition was worsening.
 

Soon my life began to change in negative ways.  I moved into a cheaper  apartment that was further away from my job.  My old car finally gave  out and I didn't have the credit necessary or money saved to buy a new  one.  The bus route did not run near my job, so I had to quit.  On top  of everything else, I felt horrible.  I was so weak I could barely  move.  It felt as if my body were made of steel and being pulled  downward by a big magnet.  Arthritis was developing in my hands.  My  feet and legs were full of fluid.  I had no appetite. I was unable to  work.  I applied for Social Security Disability but was denied.  I lived  by the charity of my mother.  I could barely pay for rent, utilities  and methadone, so I certainly couldn't afford expensive blood tests  every six months for my liver.  I just thanked God that I was not a  drinker.  That is probably the only thing that has kept my liver from  failing.
 

In 2004, I moved back to my hometown.  I moved in with and became the  caregiver for my mother, who was now elderly and in need of assistance.   Over the next eight years, my lifestyle vastly improved.  Although I  knew there was a silent killer in my body, I felt pretty good.  I still  had no health insurance, so I wasn't getting the regular blood tests I  had been advised to get many years ago.  I was gambling that my liver  was alright.
 

About a year ago, another old friend was diagnosed with hepatitis C.   After just one course of today's more sophisticated medications, his  hepatitis C was cured.  This made me both hopeful and angry.  Now, this  fatal disease that has been living in my body could more than just go  into remission......it could be cured.  The only thing standing between  me and a cure was money!  
 

Once again, hope presented itself at my methadone clinic.  The local  health department offered free hepatitis B vaccines.  The first two were  given at the clinic.  The third and final was given at the health  department.  When I went there for my vaccine, I asked for a hepatitis C  test.  They drew my blood and did the test for free.  While I waited  two weeks for the result, I hoped I would be that rare individual who  spontaneously recovers without treatment. Needless to say, I was not.   My test was positive for the hepatitis c virus.  I was told that I would  be referred to a doctor who would do further testing  and charge  according to my ability to pay.  I was so excited!  Things were finally  happening for me.......until I got a letter informing me that the doctor  was no longer accepting new patients such as myself.  
 

Now I am back where I started.  I know I have hepatitis C.  I do not  know the condition of my liver.  I do not know if I need treatment.  I  know that I cannot afford the testing and medications needed to  recover.  My mother passed away in 1912, leaving me a very small  inheritance and unemployed.  I am 55 years old now, and I don't feel  good.  That overwhelming tiredness is back.  I don't want to suffer and  die from liver cancer.  I need help, hope........
 

I remember when I was younger, healthier and had insurance.  I was naive  enough to believe that the "less fortunate" in this great country would  be taken care of when they really needed help.  I couldn't imagine that  anyone with cancer, diabetes, heart disease, epilepsy, hepatitis  C,............would ever be told that although their diseases could be  controlled or cured, they were not eligible because they had no means of  paying for treatment.  There are many other people just like me, who  don't have Medicare, Medicaid, private insurance, credit or cash to  cover health care.  Even Obama's insurance rates are more than I can  afford.  I don't know how I will continue to cover my current living  expenses much longer, let alone the additional expenses of trying to  maintain my health as I age.  I am now the "less fortunate" and I'm  scared.
 

This person chooses to remain anonymous, and I respect their right to  that decision, as I respect their courage in the face of a very long and  difficult journey living with Hep C.
Daryl Luster 

Hi....Here  is a little about me..Well I guess you all know the usual symptoms of  Hepatitis C..well i had them all over the years,but not one pin pointed  them to me having the virus..I had a heart attack in 2001..and went on  meds for this condition.In 2008 my Dr wanted me to go on Cholesterol  reducing meds not because of elevated levels but it helps the heart,she  then sent me to see a GI to get his input as my liver enzymes were up  slightly..So off I go to the nearest city..4 hr drive away.He examined  me..said I had a fatty liver and if I lost 10 lbs upper body weight I  should be ok.(115 lbs at the time).I was almost out through the door  when I casually mentioned I had a blood transfusion in 1988..He order a  screen done,two weeks later I'm informed I have Hep C..In May 2010 I  started 48 wks of the worst abuse I have ever undergone..but I got an  all clear at 12 wks...I finished TX in April..6 months later Mr Nasty  was rearing his ugly head again...No further treatment for me unless  something new comes along..I've found great support in all our  groups..Before that I was drifting alone..I live in rural Newfoundland,  Can ,no groups ..no support...But to get to my logo..as I go along the  highways I see all the magnets on vehicles supporting this and that.I  have a support the troops on mine..So I went looking... nothing out  there..So I started out with my big yellow C..(our big C).added Be as in  Hep B and Aware as in Hep A..Everyone needs to stop and think of this  sneaky virus...We never think of things happening to us but we all know  they can..So lets all be aware and share what we know with others and  bring more attention to the Hepatitis C virus..

I am looking for people to contribute their  own HepC stories, and I would appreciate hearing from you, for the  purpose of publishing them here so that others may learn from your  experiences. This request includes people with Hep C, treated and cured,  in treatment, and in all stages of Hep C. I am also interested in  hearing from spouses, partners, caregivers, and family members.
Please contact me by using the link on the "Contacts" page. I look  forward to hearing from you, and wish the very best outcomes for all, in  your battles with this terrible disease.
 

Daryl Luster

This is from an anonymous contributor:
 

It was late August in 1982, and the San Bernardino County Fair was
in full swing.  Tom W, had met a couple of the carnies that summer,
and we took advantage of the connection to stay in the campground area
after hours to drink.  After two nights of this, we had become
accepted into their group.  I even began entertaining the idea of
hiring on and hitting the road with them.
     One evening several members of the Vagos Motorcycle Club rode
into the campground on their Harleys to drink with the carnies.  The
Vagos were flying their bold colors of bright green, and they were
completely fearless of anyone in the circle.  The road captain was
big, resolute, and utterly foreboding.  After a few beers with them, I
was content to soak in the environment.
     Everything was cool.
     But the idea of etiquette could be lost on Tom, and soon enough
he was hitting up the Vagos for beer after beer.
     Finally the road captain had seen enough.
     "I'm tired of you sponging off of us, pal.  You had better leave.  NOW."
     Tom tucked his tail between his legs, turned heel, and left the circle.
     "Let's go, Vance," he said in parting.
     The road captain looked over at me and said, "If you're with
him, you're gone too.  Get moving."
     As I turned to leave -- cast out of a ring of outcasts -- I
realized I had picked up a shadow in the process.  The road captain
had decided to escort me away from the circle.  I had been kicked out
of parties before and was always happy to oblige; but I refused any
handholding in the process.  This had always struck me as downright
humiliating, and I refused to change my stripes even then.
     I turned around and faced the road captain.
     "I know you could beat me to death right here and now if you
wanted to, I have no doubt about that.  I don't want to fight you, but
an escort out is going to be a problem.  If you allow me leave without
one, you will have earned my ultimate respect.  Otherwise you're just
going to have to pound on me."
     The road captain stepped back and looked me dead in the eye,
measuring me up.  I thought for sure I was dead meat, but he then
solemnly reached out and shook my hand.
     True to my word, I left the party circle.  I left Tom to his own
devices at the fairgrounds, jumping the fence to head back to Apple
Valley in anticipation of a much needed shower and a good night's
rest.
     On Thursday morning, August 19, 1982, I woke up feeling
refreshed and energized.  By early afternoon, I was looking forward to
hitchhiking back out to Victorville for another evening out at the
county fair.
     The evening of August 19th was warm and the crowd electric that evening.
I reflected on how lucky I was to be alive.  I was perfectly content to relax
and watch the activities of the evening come to fruition.
     Eventually, I ran into Floyd and Tracy, who had come to the fair
that evening with George Hernandez and Ron Halderson. We drank a
few more beers and eventually met four
young ladies who lived in Apple Valley.
They were happy to have us escort them throughout the fairgrounds..
  Eventually, we all came to the conclusion that we should retire to the
Ranch for the remainder of the evening.
     Once the nine of us had arrived at the ranch we became better
acquainted with the ladies we had brought along with us.  Tracy and I
were kindred spirits when it came to the consumption of hard liquor,
and this evening was no different.  We split a fifth of Jim Beam for
old times' sake, and reflected on our chances with the young ladies.
     We had promised to return the young ladies to Apple Valley.
Eager to get on with the task  at hand, the nine of us piled into Floyd's
early 1950s era Chevy  Apache pick-up truck and coasted it into town.
    About halfway down the hill from the Ranch we ran out of gas,
and that's the honest truth.
     As we began our long walk back up the hill toward the ranch,
time for idle conversation had come to an end.  There were five of us
along with the four young ladies.  One of us was going to be the
lonely dog for the evening, and none of us wanted to be.  I considered
returning to Apple Valley before the trouble started, but only
briefly.
     As we were walking up Highway 18 toward the Ranch, Ladd Partin
pulled up alongside us with a couple of ladies of his own in tow.  One
of them had forgotten her purse at Kaiser Permanente, and they were
driving up there to retrieve it.  Ladd was 21 years old, and owned a
beautiful metallic green 1972 Chevy Chevelle, complete with hood
scoop, sidepipes, and bucket seats.  One of his female passengers sat
beside him and the other one sat in the left rear seat of his
impressive looking car.
    George and one of the young women jumped into the back seat of
the Chevelle.  Everyone else jumped up on the hood.  As Ladd yelled
for everyone to get off his car, I walked over to the passenger door.
George quickly reached over and locked the passenger door, giving me
his middle finger.
     He then sat back in his seat and laughed tempestuously.
     George and I had always had problems with each other.  He came
from a modestly affluent family, especially for the confines of
Lucerne Valley.  He had stable, caring parents whereas I had come out
of the dregs of society and had long since accepted my fate.  The
problem with George was that he had a tendency to be petulant about
it, and that is what created the friction between us.
     The only sensible thing to do was to become the odd man out and
return to Apple Valley.  I thought about walking the rest of the way
to the Ranch to cool off.  But the whiskey was in control, and I
decided that George and I had to square things up with each other once
and for all.  I stepped over to the right front fender of the Chevelle
and climbed up on to the hood alongside Tracy.
     Tracy and I were the only ones with nothing to break our fall,
and as Ladd accelerated away from the roadside we knew that we had
upped the ante beyond the point of return.
     We were young kids blind to the way we were manipulated by the
effects of drugs and alcohol.  None of us wanted anything to do with
the death of another as we drove up that hill.  But as I reflect back,
the irony of this situation became abundantly clear.  My current
situation eerily resembled an event that had occurred just a few years
earlier.
     Only now, instead of Floyd clinging to the hood of my car as I
raced toward Ladd's house, I was on the hood of Ladd's car as he drove
toward the Ranch.
     "For we do not wrestle against flesh and blood, but against
principalities, against powers, against the rulers of darkness of this
age, against spiritual hosts of wickedness in heavenly places." (Eph.
6:12 NKJV).
     Or better yet, sometimes when you pursue the beast, it eats you.
     Ladd drove up the highway much faster than anticipated, and I
knew Tracy and I were in deep trouble.  Neither one of us had a way to
break our fall once our momentum shifted.  Disaster loomed ahead.
     As we neared the last bend in the road before the Ranch, I
realized this was where Tracy and I had narrowly avoided colliding
with a semi-truck several years before.  It was also the same bend
that Floyd and Tracy's mom had fired into as I sped away from the
Ranch in 1977.  Ultimately this location was where disaster would ring
true to its mark, holding no quarter on that early Saturday morning of
August 20, 1982.
     Ladd entered the bend in the road, overcorrected, and swerved.
Tracy and I rolled over our respective quarter panels in an attempt to
avoid the momentum of the onrushing car.  Tracy was able to
successfully roll clear of the Chevelle with inches to spare.
     I was exceedingly less fortunate.
     The young lady sitting next to me grabbed me in an attempt to
recover my fall.  As a result, I was thrown directly in front of the
oncoming Chevelle.  My head cracked hard against the pavement as the
lower half of my body was collected up underneath Ladd's car.  The
low-lying sidepipes of the Chevelle then drug me along the pavement,
embedding skin and denim into the highway for approximately 14 feet
before I cleared the underside of it.  The next morning, investigators
from the California Highway Patrol office would testify to the
evidence of it.
     As I lay unconscious on that stretch of desolate highway
complete pandemonium ensued.  Floyd later told me that he ran up to me
thinking I had already died.  As he held my head in his hands, he
watched as my head swelled to twice its size.
     He grabbed my shoulders, shook them violently, and started to scream.
     "VANCE!"
     I was awakened by the sudden excruciating pain in the right side
of my chest.  As I grabbed at my chest, my right hip exploded with
pain as well.  As I grabbed my hip, more pain met me from my right
shoulder.
     The quiet night in the foothills of Lucerne Valley became utter
chaos as I began to scream in agony.  This was further punctuated by
the hysterical screams of the young ladies who were with us.
     Floyd yelled out an epithet of profanities, concluding with,
"Don't you die on me!"
     In the midst of all of this, Ron Halderson overheard the distant
whine of a semi barreling down the highway at 70 mph from Kaiser
Permanente.  He quickly understood the implications of this and pulled
me out of the highway by my heels.  Unimpeded by our presence, the 18
wheeler cruised by smoothly, leaving us in the howling blast of its
wake.
     At that point Ladd left the scene and sped down the mountain
with his two lady friends to report the accident.  At 2:37 in the
morning, the metallic green Chevelle screeched to a halt in front of
the Lucerne Valley Fire Department next to Pioneer Park.  He ran
inside and notified them that somebody had been hit by a car up on
Highway 18 near Geetam.  The Lucerne Valley Fire Department responded
with prompt and professional efficiency.
     One problem: Geetam was two miles downhill from the scene of the accident.
     We watched helplessly as the fire department scoured the
mountainside on the highway below.  Miraculously, a lady only known as
Mountain 4 drove up to the scene in a green Ford station wagon, and I
was thrown into the back of it.  Ron Halderson jumped into the
passenger seat of her vehicle, and as Mountain 4 drove down the
mountain toward the rescue vehicles below she began hailing them on
her CB radio.  The two eventually met up with each other, and I was
transferred to the ambulance, which then transported me 16 miles to
Saint Mary's Desert Valley Hospital in Apple Valley.
     After reporting the accident, Ladd drove back up Highway 18 only
to watch as the ambulance raced down the highway in the opposite
direction.  He then drove to the Ace Motel and sat down, uncertain of
what to do next.
     Ladd spoke with me on numerous occasions throughout the years
about this.  He has apologized to me every time, and every time I have
forgiven him.  It was my decision to jump up on the hood of his car,
and I hold myself accountable for the consequences of my own actions. Yet Ladd still eventually drank himself to death
     After arriving at St. Mary's Desert Valley Hospital, I was
transferred over to the care of the emergency room staff on duty that
evening.  I was still extremely intoxicated, and I began attempting to
tell jokes in hopes of easing the gravity of the situation.
     Dr. Thomas, the emergency room physician, eventually placed a
chest tube into the right side of my chest.  He visibly paled as
bright red blood began gushing into the drainage system below.  As I
witnessed my own ex-sanguination, the brevity of my life bled out with
it.
     When Dr. Su, the emergency surgeon on call, arrived I was
quickly prepped and rushed to the operating room.  While en route to
the operating room, I signed consent forms for emergency surgery.  It
was then that Dr. Su somberly advised me of my chances of survival.
He told me, "I don't think I can save you, young man! You had better
make your peace with God!"
     I went into surgery that evening with little hope for survival.
I cannot describe what it felt like not having a chance to say goodbye
to family or friends.  As the anesthesia began to take effect, I
barely had time to say a quick prayer for mercy.
     I took complete advantage of that opportunity.
-------
 My liver had been lacerated, my spleen and bladder had been ruptured,  and the right side of my pelvis had been shattered.  The skin on my  knees and the palm of my left hand had been ground away, deposited along  a stretch of rough asphalt on Highway 18.  I tore ligaments in my right  shoulder when it dislocated during the accident.  To say I was in bad  shape would have been a gross understatement.
After Dr. Su had taken a portion of one lobe of my liver out and stapled  the rest of it back together, my blood pressure began to  differentiate.  The systolic pressure (the higher number) began  increasing while the diastolic (the lower number) began decreasing.   Suspecting a closed head injury, a call was placed to Loma Linda  University Medical Center for emergency transport.
As I was being taken out to the transport helicopter bound for LLUMC, I  had just enough time to see all my friends and family, who had gathered  in the waiting room.
The transport team told me, “Wave goodbye, because this might be the last time you see them..."
Later, as neurosurgeons were evacuating blood from the brain injury on  the left side of my head, they discovered an old head injury caused by  the fight I had been in on my 22nd birthday.  They evacuated the old  dried up blood from it as well.  I was given little hope for survival,  and if I did, I might likely be in a vegetative state.  My family was  informed I probably would never be able to walk again. When my mom and  Ron arrived in Loma Linda, the surgeons asked them if I had made any  organ designations. Ron (whom I have reconnected with after all these  years and consider the closest person to a dad I ever had) said he  wanted to punch them.
As I lay in a coma at LLUMC, Mike Kearney had been arrested in  Victorville.  While being processed, he was told I had been in a car  accident and that I probably would die.  Mike became extremely  distraught at the news.
The jailers laughed and told him, “Vance got what was coming to him, and you know it!”
When Jim had broken into the house up above Silver and Black Bridge,  several neighbors had witnessed it.  Once the owners were able to track  him down, they beat him severely for his indiscretion.  Afterwards, they  asked Jim about my whereabouts.  He told his assailants that I was in a  coma and clinging to life.
Jim was told, “Good!  He’s lucky we didn’t get to him first!”
I was in a coma for five days, and when I finally awoke I was completely  disoriented to time and place.  I thought I had passed out at the  Country Kitchen in Lucerne Valley, and dreaded facing Captain Ozone for  my faux pas.  As the memory of the car accident returned, I realized how  close I was to meeting the death that constantly beckoned me.
My head seemed stapled together.  In fact, there were so many staples  that I unable to actually count them all.  The skin of my right middle  finger had been completely peeled away during the accident.  After the  gravel had been washed out of the open wound, the flap was replaced and  sewn back together.  Since I had an unstable pelvic fracture,  I was  placed in a hospital bed with an air mattress -- completely new  technology at the time.
The pain throughout my body was excruciating.  I received so many  Demoral shots that my thigh muscles became a mass of rock hard knots.   Eventually, the pain medication just oozed back out of the injection  sites, so I had to be rolled to my side despite of the pelvic fracture.
I refused to eat for a while because of the pain.  The only person that was able to get me to eat was my stepdad Ron.
Labor Day brought what came to be known as the first US Festival in  Devore, California.  I remember looking out my window at sunset that  weekend and linging to be there.  The NFL went on strike and began using  replacement players.  It was the worst NFL season ever.  I was in a  two-patient room, and my neighbors kept dying on me.  The only thing I  had to look forward to was the occasional dose of Demoral.
But on Friday evenings, a group of residents on duty would rotate  through each wing of the hospital with their acoustic guitars, singing  songs to the patients.  This brought me an overwhelming sense of peace  and calm, and allowed a temporary reprieve to the pain and suffering.
Several weeks went by, and my health slowly began to improve.  My  injuries began to heal, and I began asking when I could go home.  To my  dismay I was told, “You’ve got a while yet before that is going to  happen.”
Several days later, my temperature began to increase dramatically.  I  was transported down to CT Scan, where it was discovered that I had  developed a massive abscess on the right side of my chest.  It was  decided that the best course of action was to insert a chest tube to  drain it.  As surgical tools were pressed against my ribs to insert the  chest tube, I felt the resonation of that vibration deep within my soul.
Attempts to drain the infection in the right side of my chest were  uultimately nsuccessful, and as a result I became very sick.  After a  couple of days, a surgeon came by my room to speak with me.
“Do you know what it means to be made to lie down in green pastures?”
“What about being led by the still waters?”
The surgeon convinced me that I had to go back under the knife.
An incision was made just under my chest muscle from my breastbone and  was advanced all the way around the side of my chest.  The incision was  extended underneath my shoulder blade and all the way around to the  middle of my back.  Rib spreaders were then used to crack my ribs open  so that room could be made to remove the abscess.
I came out of surgery later that day with three chest tubes inserted  into the right side of my chest.  The pain was overwhelming.   Respiratory therapy came by to visit and gave me a strange looking  gadget called an Incentive Spirometer.  They told me that I had to take  deep breaths into it so that the air sacs in my lungs would remain open.
“If you don’t work on your deep breathing, your lungs are going to  collapse and you are going to get really sick.  You don’t want that to  happen, because then we’re really going to have to go to work on you.”
I thought to myself, Why would I want to do something painful like that?  I think I’ll just take my chances!
A couple of days later I developed the pneumonia I was warned about.
Respiratory therapy tthen drew an arterial blood gas from my left wrist,  and it felt as if the one-inch 22-gauge needle was being shoved all the  way through to the other side of my arm.  They took a suction catheter,  stuck it up into my nose, and pushed it down into my lungs to suction  out the infection caused by the pneumonia.  It felt as if a vacuum hose  had been shoved into my lungs.  This procedure was repeated several more  times throughout the next few days.
I began using my Incentive Spirometer faithfully after that.
As I began to recover from the effects of the thoracotomy, the chest  tubes were removed.  Unfortunately my temperature spiked again soon  thereafter. Once again I was transported down to CT Scan, and this time a  massive abscess was detected just beneath my diaphragm.
It was decided that the best recourse would be to insert another chest  tube.  Once it was inserted, the surgeons would push it down through my  diaphragm hoping to drain the massive infection that had formed there.  I  was completely conscious when this procedure was performed, and I  cannot begin to describe the pain.
The procedure proved to be ultimately unsuccessful, and I returned to  the operating room for my fourth major surgery.  I remained on a  mechanical ventilator for a short while afterward.
Back in 1982, mechanical ventilators lacked the high-tech augmentation  that they do today.  I literally felt as if I was breathing through a  straw, and this made me extremely anxious.  I was encouraged to relax  and breathe normally.
...right....
I had been cut open two thirds the width of my upper abdomen.  The  incision was tied together loosely with large rubber tubing, leaving the  wound open to drain.  Gauze was then stuffed into the open wound to  draw out what was left of the infection.  It was a hideous process, and I  had a front row seat while LLUMC nursing staff performed it.
Pain from my injuries and subsequent surgical procedures was such that  the control of it was only marginal at best.  Sleeping throughout the  night was a luxury.  When I did fall asleep, it usually was not until  about 4:30 in the morning.  I was then awakened by lab technicians at  5:00, surgical rounds at 5:30, nursing rounds at 6:00, and breakfast at  7:30.  It was a constant, unforgiving cycle.  I gradually became  institutionalized as the weeks slowly passed.
I once again began to slowly recover.  By late October, I could get on  my feet with some assistance.  I had been bedridden for eight weeks, and  learning to walk again proved to be an extensively difficult process.   But as the days rolled by, I grew stronger.  Eventually, I was walking  without assistance.  I then began spending several days a week in rehab  attempting to strengthen my right shoulder.  Occupational  Rehabilitation's motto of no pain, no gain quickly became a fact of  life.  But once again, my recovery process was set back when two  abscesses were located in the right side of my back.
When I returned to the operating room, I felt very little anxiety about  it.  It was just something else that needed doing, another task to be  performed.  But afterward, it became crystal clear that the pain from  this surgery was going to be the most excruciating yet.  The surgeons  had to remove a piece of a rib, and there were two new deep three-inch  open wounds in the right side of my back packed wet to dry just like my  abdomen.
Every morning the surgeons would arrive to remove the old dressings from  in between my ribs and lungs, only to push clean ones back into the  cavity. The pain was beyond belief.  I am sure my screams could be heard  on the other end of the hospital.  I quickly learned to forgo any  Morphine medication until after the packing, since getting it beforehand  did nothing to help alleviate the agony.
After about a week of recovery, I slowly began making my way out to the  patio just down the hall from the unit I had come to call home.   Eventually, I began taking the elevator down to the front lobby to sit  in the lounge chairs and read the magazines.  By the third week I began  walking around outside. Although it was a painful chore, I would force  myself to do this in order to get better.
Even though I was told that I would never feel the same, the  encouragement I received during that time helped motivate me to look  beyond it.  Captain Ozone and some other people from Lucerne Valley  drove down to visit, and this provided me encouragement to get on my  feet and out of the hospital.  I am forever grateful to them.  Finally,  one morning I was told, “You know the only thing that is keeping you in  the hospital right now is the heplock you have in your right arm.”
That was all I needed to hear.  The heplock came out the next day, and  after three days I was completely free from the effects of the Morphine.  Arrangements were made for my discharge.  I had lost 25 pounds during  my hospitalization, dropping to a mere 130.  A gastrostomy tube would  remain in my stomach for several months afterward.
I was discharged from Loma Linda University Medical Center a few days  before Thanksgiving.  The right side of my chest and the inside of my  right leg would remain numb for about a year, and I would have to deal  with a chronic limp for the rest of my life.  I was unable to grip  anything with my left thumb for a year, and my right shoulder would  chronically dislocate at least more 20 times in the next six years.  I  would not come to fully realize the extent of my injuries until several  years later, but I was happy to be going home.
As I was discharged from Loma Linda, I was warned not to drink again.
Barely able to walk, I celebrated my release from Loma Linda later that  evening by cracking a couple of Rainier Ales with Steve at the Chief  Motel.
It was good to be alive and see old friends
-----
OK so that little story leads up to HOW I got hep C. All I can say is I  either got it from the blood transfusions or from IVDA (Heroin) for a  brief while after I got out of the hospital.
I had my epiphany of sorts in 1985, quit drinking and drugs, and  eventually got into respiratory therapy of all things. This is still my  profession 25 years later.
I didn't find out my hep c until 1999 after attempting to donate blood.
I did 48 weeks of pegyated interferon and Ribavirin in 2003 but I relapsed within 3 months.
In 2007 I began traveling as a respiratory therapist. I did this for  four years. After New York, I spent some time in Missouri, Illinois,  Vermont, and Cali.
I landed a travel job here in Monterey, CA in Jan 2011. After six  months, I came on staff as a lead in did that for a year. After a year  of that, I went back to nights (still in Monterey) so that I could try  chemo. It took a lot of agonizing. My RNA count was over 4 million but  my liver still hadn't turned cirrhotic even though I had gotten quite  fond of vodka martinis after i seperated. It was a seven month regime...  Peg interferon, Ribavirin, and a protease inhibitor called Victrelis.
I had pretty much decided not to do it, but then this respiratory  therapist I knew and worked with began seeing each other and pretty much  changed my perspective; and I'm sure saved my life.
I wen to chemo last December and it was a living hell. I am four months  post now and feeling a lot better, but STILL am getting scabs on my  shins.
But the Victrelis gave it an 80% success rate, so I somehow survived  nights of the worst soul wrenching depression ever. I spent many a night  weeping on Lisa's lap weeping because I was so sick. The vomiting I did  during that time was so bad each time I thought I wouldn't survive it.
Amazingly, I completed treatment, and even more amazingly my RNA count was still zero after my three month check.
I could not believe it!
It's not counted as a sustained vascular response until 6 months out.  But oily 4% or so relapse from here. I have to admit I do feel better. I  now know what was the hep c, and what was permanent from the liver  damage from my car accident in 1982, but I still feel a lot better.....
A WHOLE LOT BETTER!
Don't drink people!

My name is Bernie Miller. I celebrated my 60th birthday this week. Let  me begin by telling you some of my past. I was born in Arkansas but  moved to California with my family in 1960 at the age of 6. I grew up in  the San Francisco Bay Area in the 60's. As a lot of young people did in  those years, I experimented with alcohol and drugs. When I was 18, I  started working in bars. At that point, alcohol became my favorite mind  altering substance. Back then drinking on the job was not only accepted,  but expected of bartenders. I did not let down anyone's expectations in  that regard. I also learned that using crank (the drug to go fast  before the modern day methamphetamine) would help me to stay awake and  be able to drink longer. By the time I was 30, I had done enough damage  to my liver to be turned down for a life insurance policy. This scared  me so I swore off drinking several times over the next few years. In the  meantime I started a new love affair with crank. So much so that I was  finally able to quit drinking and just do the crank. Originally I  snorted crank, then learned to smoke it. I eventually began doing it  intravenously. I always considered myself to be immune from AIDS and  hepatitis because I didn't share needles. Somehow, I never got into  trouble with drugs till I was almost 54 years old. Because of possession  for sale of a controlled substance, I was sent to San Quentin State  Prison. While in prison I was told by a prison doctor (who had the  bedside manner of a parasite) that I had Hep C, Cirrhosis, and Ascites,  and that I was going to die. With that information I decided when I got  out of prison that there was no reason for me to not go back to drugs.  My health went on a downhill spiral immediately. In 2011, being in such  bad shape that I could no longer do drugs, I checked myself into an  alcohol and drug rehab. After a few months in this program, I heard that  there were treatments available for people with Hep C. I went to my  insurance who referred me to a primary care doctor. I told him I had Hep  C and he referred me to a GI who does a lot of work with people with  Hep C. My GI did a lot of blood work on me. My viral load of Hep C was  7.4 million which is extremely high. In his estimate, I probably  contracted it over 30 years ago (long before I even started using  needles.) He then explained how easily this virus is spread. All the  time I thought I was protecting myself by only using new needles, I  probably already had this disease. I can't pin down a time or event to  when I got it, but knowing how many ways it can be spread sure let me  know it could have been any of hundreds of times and/or situations.  Enough of that. My GI suggested that I get started on triple-therapy  treatment with Interferon, Ribavirin, And Incivek. While waiting for  approval from my insurance, a friend of mine told me about a support  group on facebook for people with the disease. I joined this group  (Hepatitis C Family and Friends) about 1 month prior to starting  treatments. Here I was given information about what to expect from  treatment and questions I should ask my doctor. People on this site have  helped me get through the first 5 months of treatments so far. It has  been a very rough ride for me. I have suffered almost every possible  side effect and may have invented a few of my own. LOL. Anyway, without  the support of this loving and caring group, I would probably given up  on treatments a few weeks into it. My Hep C virus has been undetectable  since week 4. That doesn't mean I am cured, simply means the treatments  are working. I still have 6 months of treatments and I know with the  continued love and support of this group, and the prayers to a loving  God that I have recently learned to appreciate, I can and will make it  through this. I will someday be doing the happy dance with so many  others who have fought this dragon and won. I will finish my story with 3  things. #1 Getting clean and sober has saved my life and I have never  left the rehab. I am now on staff as a manager and counselor. I want to  help others who want to stop destroying their lives. #2 Having this  disease, going through treatments, and finding this wonderful support  group has taught me a whole new level of humility, faith, and gratitude.  My 3rd and final comment will be about getting tested for Hepatitis C.  As I mentioned above, I probably had this virus long before I stuck a  needle in my arm. There are so many different ways to contract this  disease. Unless you live in a germ-free, virus-free environment, you  would be as foolish as I was to think you are immune to being infected.  Although I probably got mine from something related to the drug  environment I lived in, you don't have to use or be around drugs to get  it. Get tested. Be safe. New treatments coming out have minimal side  effects and great results.