HEPATITIS C AWARENESS
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More Personal Stories

 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.