Personal Stories

 My HCV Journey
February 23, 2015

My name is Debbie. I would like to share my HCV journey with you from first diagnosed thru treatment and to present day....

In 2011 I had decided to see a GP because I was feeling very fatigued,  no energy, with itching on my ankles and wrists, loss of apetite, and  depression,  just "not quite right".  I had noticed this for some time  but never having the same symptoms consistently except the fatigue.
I hadn't visited a doctor on a regular basis, but I could no longer ignore that something was wrong.

I explained my symptoms to the doctor and she asked me my age, asked to  look at the palms of my hands right away. I thought that was odd...then  she asked if I had ever had a transfusion, any tattoos, or had I ever  been an IVDU (intervenious drug user).....I had been and shared needles  in my late 20's.

She promptly ordered an HCV antibody test along with a CBC (complete  blood count) and CMP (complete metabolic panel).  She told me that I may  have HepC due to sharing drug needles.  I thought "I couldn't  have  that" fact I was sure the test would come back negative........or so  I thought.

Between the time I had the test done and waiting on results, I did some  research on HepC.  I was not pleased at what I had found out...... The  test came back "postitive"  with a viral load of 31.5mil.
At first I couldn't speak, I just sat there and then it hit me....I had  HepC and began to cry and thought I was going to die of liver disease or  hepatic cancer.
I remember what the research said and it could end badly.
The doctor spoke to me at length about the current Tx (treatment) and it  would be the triple therapy, Interferon, Ribavirin, Incivek. This would  be a chemo-type therapy (INF) along with the antivirals and there were  some side effects.  I decided to risk the SFX and treat for the advised  48 wks. Unfortunately, the side effects ultimately were the result of my  ending Tx after only 5 weeks.  I felt defeated.

Forward to 2014, and a more tolerable Tx became available for GT1a which  was my genotype. I was overjoyed the prospect of treating for 24 weeks  without the poison Interferon!!  I did have some hesitation but I  trusted my Hepa.  The treatment would be Sovaldi x2/Ribavirin x1 per  day.
I began treatment 5 days after my doctor submitted my request to treat.

This treatment was very tolerable with little to no SFX.  I was so relieved!!
At the 2nd SOT (start of treament) my viral load was 11.5mil.  and 21  days into Tx I was only 17.....the lab cut-off was <15 for UND  (undetected).
For all intents and purposes I was well on my way to achieving SVR....Life was good!  I finished my Tx January 14th, 2015.

Presently, I am waiting to have my last blood test which will be April  1st and on April 9th I will have my final results with my Hepatologist.   This will be my EOT12 weeks.  This is the test result that will  determine if the Tx worked and I have reached SVR (sustained virilogical  response), a cure or I have relapsed.

It is now February 23rd, 2015 and I am waiting not so patiently, but I  wait just the same. I'm staying positive yet realistic that I will be  cured...and if not...well, I have a Plan B...Harvoni and I will gladly  treat again to save my life.

I share my story with the reader who may be newly diagnosed or the  person who is afraid to get tested because they feel the uneducated  stigma behind the word "HepC".

I ask you this one question...What is more important..the stigma or the chance to Save Your Life?  

March 23, 2015

I received my 5.5 week labs and I'm UNDETECTED!!!!   It seems as though I  will be cured, but I'm going to wait until April 9th to  celebrate........

April 9, 2015

It's official......I'm cured of this scurge of a virus after 30+ yrs! I  have so much to be grateful for and now can live a Hep free life and  give back to the HepC Community!

PS. If you have any reservations about treating I'm here to let you  know...DON'T WAIT...TEST AND TREAT and SAVE YOUR LIFE. THERE IS A  CURE...


My story starts off in my 30's back in 1993 when I got with a boyfriend  and started experimenting with injecting hard drugs.  It was mostly  cocaine and some heroin plus carrying on with my addiction to alcohol as  well.
I was also addicted to my relationship and would have gone to the ends  of the earth to be with this guy no matter how much abuse I tolerated.   It didn't matter what path with drugs and how close to death I came from  overdosing 4 times plus in 1996 I believe I caught Hepatitis C that  year.  I know it because it was the time when everyone was being  careless with mixing the drugs in whose spoon or whatever.  We never  shared rigs but that didn't matter, it was either snorting from  someone's bill with someone's blood or the mixing devices but the group I  was in caught Hep C but different genotypes which really boggled my  mind but some of us caught Hepatitis B as well but my body fought the  Hep B off.  
I didn't find that out until a few years later but I left my  relationship and that scene praying on my knees to get me out of the  hell hole I was in.  I moved in with my Mum and got the highest paying  job I had ever gotten being a legal secretary in a top notch Trademark  law firm so I basically did a 180 degree turn like I have when my life  was getting unbearable and losing control over it.  
I started noticing some weird symptoms in about Dec 1996 and thought I  was sick with the flu.  I wasn't vomiting but felt very nauseaus,  fatigue and just sick all over with aches and pains just like the flu.  I  was staying with my Mum and she just thought I was terribly sick from  drinking as I was still carrying on with my drinking career.  
A friend of mine that was also using came by my Mum's place and asked to  speak to me so I went downstairs and he told me to get tested for  Hepatitis C.   I didn't even know what that was but I got tested anyways  and was pronounced Hep C positive genotype 1a.  I basically was floored  plus I was back in my old relationship with my boyfriend and went to  tell him but he had some old woman in his room in the skids and I almost  slammed the door down.  
We had just gotten back together and this woman and I had an altercation  and she left and I told him.  He didn't even care to get tested nor  cared to quit drinking but I was still carrying on but read as much  information I could get my hands on.  
We both moved to Langley in my hope of getting a life going together and  getting ahead in life but ran into the same kind of people in the  building plus I got a job in Surrey and he didn't do anything.   I got  fired because I missed too many days and it was so depressing plus I  started to get sick more often and had a horrible 3 weeks of flu-like  symptoms in which I vomited for 24 hours straight one day and night.  It  was horrible and I thought I caught the Sydney flu never even thinking  it was related to Hep C.  My boyfriend wasn't sick at all with any  symptoms.
 We were still doing drugs here and there with the little money we had  and I was still getting abused both physically and emotionally so I  ended up meeting my soon to be daughter's father upstairs at a friend's  place.  
We had gotten together and I took off with him to Gibsons and left  Langley behind except for my stuff that I got 2 weeks later.  I was  drinking like a fish with my new rebound guy but got pregnant with my  daughter and slowed down a lot but didn't stay with her father and left  to Penticton to live.  
I ended up with another guy who was basically my daughter's step dad but  after she was born, I was so very ill, I couldn't leave and had 7 years  of being very ill, not knowing why I was that sick and chalked it up to  Hep C.  I even quit drinking for 5 years when my daughter was young and  I had her tested for the virus at 2 years old and she was negative so I  proceeded to do all the careful things we were taught so others  wouldn't get the virus.  
None of my long term relationships as being monogamus never got the  virus by sexual contact at all and I had done all the research on that  part of it plus everything else I could get my hands on to learn about  the disease.
I was so tired of being in another abusive relationship, I had got some  extra money from my Step-Dad to see a naturopath and got 2x a week of  acunpuncture for 2 months straight which made me feel much better and  left my relationship and moved my daughter and I into a small one  bedroom apartment and started working p/t plus took a course in natural  health as I worked as a vitamin consultant for 2 years then.  
I ended up in another abusive relationship which seemed to be my pattern  for sure and started drinking again plus worked and looked after my  young daughter and this lasted another 6 years of hell.  I started  working at Walmart because I lost my other job because of drinking.   I  began to have these awful attacks of illness and my health started  deteriorating with all the stress I had to deal with including a  relationship with another narcissist/sociopath person but in 2011 I was  unable to work anymore, quit drinking and got rid of this guy as well at  the same time doing another 180 degree turnaround.  
I was at this time, determined to get better and get rid of Hep C as  that was the time when I heard that they added a protease inhibitor to  Peglyated Interferon and Ribavirin which would increase my chances of  clearing the virus.  I already didn't want to take only the Interferon  and Ribavirin by itself because I would only have a 40% chance of  clearing it anyways.  I had always kept check on my liver enzymes and  they were always in the normal range but my only liver biopsy was in  2001 in which I was stage 1 of fibrosis.  
I started getting more ill and got sent to the Hepatitis Clinic in  Kelowna and was turned down for the treatment because my liver enzymes  were not 1.5 times higher than normal and basically they told me that I  would have to wait and get sicker (which is the way I saw it).   I was  suffering and my naturopath didn't seem to be able to help much and  neither did the acupuncture anymore.  
I reached out to HepCBC and started communicating with Joan King back  and forth and also joined The Pacific Hepatitis Network as well and  needed to speak to others going through or have gone through treatment  and needed support badly.  Especially, living in a small interior city  like Penticton wherein I had more knowledge than most in the medical  community here.   
I reached out to Deb Schmidt as well and Joan King asked me if I would  consider doing  a clinical trial study and she told me she was cleared  from this and I said I would for sure be interested so she gave me the  info on what I needed to do.  I got a hold of Dr. Ramji's office and  went down for a fibroscan which turned out to be 0-1 fibrosis!   I  couldn't believe it!!  I had hardly any scarring and thought for sure I  would be in stage 2 or 3.  
I was in another relationship with an A.A. dude this time but he  couldn't handle me complaining and I basically booted him out cause he  caused me more stress than help and it wasn't that hard to do this  time.  I found myself making progress in that department of my life  because I had to save myself and be free of toxic people so I removed  them all.  
I finally got accepted for a 12 week trial with Merck Pharmaceuticals  for a Interferon free Direct Acting Antivirals in the fall of 2013.  As  soon as I told Deb, she got a hold of Daryl Luster to support me in my  treatment.  He was there for me every day and had met me during my many  trips that fall on the Greyhound bus, back and forth from Penticton to  Vancouver and back as my daughter was in grade 9 at the time.  I was and  am so grateful for his support.  I was and am also grateful for Joan  King even suggesting clinical trial studies because the nurses at the  Hepatitis Clinic in Kelowna never even gave me the option of suggesting  them to me at all.  
My study nurse told me that I wouldn't have even been able to tolerate  the triple therapy treatment anyways so I would have been in a really  bad pickle then.  I have never had such wicked suffering and hardships  in my whole life as this.  Even quitting drinking didn't even touch  going through this treatment and the sickness before treatment which I  found out wasn't all Hep C.  
I now am recovering from adrenal exhaustion, poly neuropathy (Hep C  related), hypothyroidism, migraine headaches, fibromyalgia and I'm  killing of H. Pylori in my gut plus working on my gut health plus the  rest.  
I had just made a trip down to Van for my 4th checkup regarding Hep C  and no news is good news plus I am grateful I am still undetected which  is a cure in my books.  I'm going on alcohol free for 4 years now on  Sept 5th and I am not even interested in picking up the bottle again for  all the trouble it caused in my life as its poison to me now.   I have  been single for 3 years now and have gone through this without support  from a great partner but at least I could do what I please and when  while sick without worrying and stressing about dishes, etc. not being  done.  
I am 52 years old now and have a great future to grab hold of the better  I get and now looking to make some good cash flow soon!!  I am grateful  that I had to only do this once and I do not see it coming back and I  thank every single person that has helped me through this.   I'm not as  healthy as I want to be and still have to work at it but I got rid of  the BIGGIE and that is huge in my books!!   The other health issues are a  work-in-progress and when I think of how far I have come, I am grateful  plus I'm helping other addicts as well thanks to my Higher  Power/Universe, I bless all others on this journey and have great  compassion and empathy to other sufferers.
May we all help eradicate this virus for good and heal the rest of the planet including the HIV epidemic as well.  
Coreen Kendrick

I am a  baby boomer, summer of love kid, hippie survivor. In 1992 the first  testing of Hep C started. I went in for a routine check up and the doc  asked me if I had been tested for Hepatitis C. I started singing the  Michael Jackson ABC song I have always had a little dark humor. The test was positive and no one knew what the medical ramifications would be.   

I started my recovery journey on Aug. 2 1985. I have been  clean and sober for 29 years. I was devastated after I found out I had  Hep C and fear set in. I kept on trudging the road and asked “why me”  I’m sober. 

For the past 28 years I have dedicated my life to helping others. I started  shelters for abused and chemically dependent kids. I initiated a county  wide Drug Court Program for kids. I have dedicated the past twelve  years to addicts with Hep C, HIV and needle exchange programs to educate  and stop the spread of the disease.

I am Geno type 2 and treated with Ribavarin and Interferon twice. I did 24 weeks then 48 weeks. I relapsed both times. I  have also suffered from Hep B which almost killed me in the 70s but it  did not become chronic. I have also had Hep A. I have progressed to late  stage liver disease having the disease most likely over 44 years.

I  continued to work through both treatments. I shared my experience as a  human blog up front and personal with my clients as a Drug and Alcohol  Therapist. I wanted to spread more hope less fear and stigma so more  might get tested.

I had  to quit work a year and a half ago due to the progression of the  disease. I mourned deeply it was my life’s work. I have since been  involved in supporting those suffering with Hep C. I also started a  support group for continued abstinence from substance abuse .

I have completed treatment and just had my four months post test I am undetected grateful hope dealer.

Debbie White


This is something a person in a peer support group I belong to posted  recently, and I thought I would share it here. Thank you Jerialice  Arsenault for being kind enough to allow me to share it here with  others.

Earlier today we were talking about depression, HCV and meds. I piped in  that I was dealing with some issues myself and wanted to share a little  of my journey with you all, in the hopes it might help. When I was  born, I had to have all my blood transfused. Saved by that blood! I was  saved by the Blood of the Lamb in 1991 by a loving God who reached down  and took all my addictions from me literally overnight. I was a smoker, a  toker, a drinker and "fornicator" At the time i didn't see a lot of  what was wrong with me, but He did. I had been baptized but gone astray-  I think mostly because of depression. I was always the ugly duckling  and never sure where I fit in- then my parents were severe alcoholics  and prescription med heads and fought all the time. It was ugly.
I left home at 18 and never looked forward to 1993:
I still had a hangover from the last binge in 1991 so got my BF to send  me to the doc, which is where I got a "non a-b hep" dx. Who even knew  what that was! They said well there's not much you can do, so have your  blood checked every year. OK. My dad died in 97 and in 98 I moved to my  ranch, and in 1999 I was in an F5 tornado by myself!!!! woah. That was  crazy. Shortly after that I began having bad bad heart palps and dizzy,  scary stuff going on. I thought it was my heart. So after tests and such  they told me I was having panic attacks- and put me on anti-D and xanax  because they were so severe. The idea was to stay on the anti D and  ditch the xanax. Well the anti-D didn't work for me, but the xanax did.  So for a year I took about .5 to 1 mg a day and it saved my life. Then I  stopped until I did my first tx with INF/RIBA in 2005.
All the sudden I was incapacitated. Really BAD. So back on the xanax,  tried anti-D again but it just made me loopy and weird. I did tx again  #2, and same thing. All-in-all it was a 3 year tx period which I don't  recall much of, except my couch, the ER and prayer. Then I stopped xanax  again after a month or so.
Then my sister, 3 best friends, & mom died, my husband left me, all  my pets died (after 15 years of having them). So back on X- Then I  stopped again up until tx this last time. And I am trying to stop now- i  take very low dose like 1/8, 1/4 and it helps, but i really want to  stop now that I am cured. I started again because I could not sleep this  summer-and I needed to rest during tx- but now I think I'll be better  able to miss sleep if i need to. I am only sharing this because we had  the discussion with amongst us & I wanted you to know you are not  alone! And also that we can find what works for us, but we need to go  thru the trials and errors. BY THE WAY SINCE THE HCV HAS BEEN GONE THE  DEPRESSION IS TOO- I have lived with it so long it feels kind of weird.  My liver is in good shape and that helps. I hope we can always encourage  and support each other thru all this-as HCV is more than just a virus.
Here's a link about HCV + Depression

I was G1b- infected at an early age-
cured by S/O in 3 weeks after failing twice.
My first post tx labs on 9-15!!!
God bless everybody.

I lived life not with a care in the world. I was an daily drug user  mainly iv drugs. I did it to escape. Never thinking that this thing  called life would catch up with me. But that all changed May 14,2007.  That was the day that my world came crashing down and I found that peace  I had been searching for through the needle I was using. I found out I  had Hepatitis c. I didnt know what it was and I was sure that they had  their info wrong. After arguing with the doctor - who looked at me like  she had just told me I had the flu- She showed me the paper. On it there  was my name and address and all the important info.. and the it said  diagnosis: Hepatitis C. As an addict I automatically thought ..doent he  know who I am? Now I am not a person of great means but I was sure she  knew who I was . She sent me to a specialist. The first appointment with  the hepatologist was strange. I was still in the whirlwind of just  finding out and not knowing what it was. I was scared but nothing  prepared me for this. In a small little room with a exam table and a  chair and colorful charts on the wall. I sat alone. Not knowing what I  was supposed to ask or what I was supposed to say. The doctor walked in  and I was at a loss for words. She started talking but everything that  came out was gibberish. I wasnt understanding anything she was saying. I  guess she could tell. She mentioned she needed to show me something.  And she showed me the one thing I wasnt ready for. It was another piece  of paper. There were alot of numbers. That didnt make any sense at all.  And the next words that came out was.. "can you fix it.. can you make me  better.. She said with treatment you have a 26% recovery rate. Without  you have a 0% recovery rate. I was shocked none the less. That day I  drove home.. doctors office was an hour and half from my home. All I  could think about was what she said. 0 % recovery rate. Wait this was  serious. How can this happen to me? I was dying. And here I am all by  myself in this car driving down a road alone. I didnt know just how  alone I would be. I needed to tell someone and I told my family and some  friends. They all just figured it was not so serious. I started  treatment. And I got real sick. I loss my hair and turned yellow. If you  know me you know I have a sense of humour and after I got aver the why  me and decied I would fight this.

When I loss my hair i decided that i could work the bald thing. And when  I turned yellow( jaundice) I would joke and say I looked like a glow  worm. I started getting sicker and sicker. Started throwing up blood. My  liver was failing and I was admitted into icu. Alone once again. I was  determined it was not going to win. So I fought and fought .. Doctors  couldnt explain it. I still get sick. Treatment was stopped and I am not  giving up. I took this thing i was told as a bad thing. But in reality  it was the best thing that happened to me;Because of this I have found  peace in my own life. I pray that they find a way to take it away from  all of us. But I know if I can go through all the doctors and the test  and the stigma.. then I can fight this..tooth and nail.. I know at times  it is hard to think that you can do it. But know you are not alone. You  have brothers and sisters in this fight that are right there along side  of you fighting with you every second of everyday. WE ARE DRAGON  SLAYERS... And we can do this.. We can fight the good fight and that  keeping a positive attitude even on our bad days we can do this... thank  you for letting me share this story with you

April Gaddis


I am a recovering IV heroin and cocaine addict. My journey through  recovery began a little over two years ago. I won't lie, relapses have  occurred. It's an extremely trying test of strength, will,  determination, and discipline for an addict in recovery. Recovery is  full of many trials and triumphs alike. It's a bumpy road. No one person  handles recovery in the same way. Where some may need counseling;  others may need support groups; methadone or soboxone clinics; some may  even need a dose of jail or rehab. Then again, some may not need any of  the above. Each individual has their own preference, program, or needs  specifically designed just for them. AND THAT'S OK.

Every day still proves to bring it's own set of struggles. Honestly  though, the cravings for me have become far and few between. My biggest  hurdle, as of late, are the memories left of what I put myself and  others through during my run on both of the drugs. The memories torment  me to the point I need consistent psychotherapy and have even been  diagnosed with Post Traumatic Stress Disorder (PTSD).

I often find myself reflecting back to old journal entries I wrote  during early recovery that serve as reminders for me today. Reminders of  why I never need to run back within the reach of active addiction.

"Sometimes I still sit back confused while attempting to accept that  this was a perverse realm of reality and not some demented fictional  dream. When I awoke from this false reality within my life, it was  single handedly the most terrifying moment I had ever endured."

"If the devil were to manifest himself before us today; heroin would be his name."

"It was in that moment that I realized I was completely and utterly  alone. There was no soft voice or gentle hand grasping mine to tell me  everything was going to be alright. And because I allowed my sin to  consume me and separate me from God, God wasn't even there. If any one  being had a hold on me, the devil would be the only one. That alone was  the most terrifying experience to have to ever endure."

My addiction began in Dayton, Ohio; followed me to Los Angeles and  Fresno, California; followed me again to Myrtle Beach, South Carolina;  and once more back to Ohio. It wasn't until after a diagnosis of  Hepatitis C while living in South Carolina that I even truly cared to  try and get clean. Yet I still didn't do it. You would think after  losing your loved ones, watching others crumble, homelessness,  prostitution, a diagnosis of Hepatitis C, abuse, etc... that you'd wake  up. Sadly it even still took more than that.

My journey through recovery began when I became too ill to function  because of the Hepatitis C. After much research, I discovered that the  majority are asymptomatic; meaning they have no symptoms of the disease.  Only a small percentage of individuals are symptomatic, and I just  happened to be one of the few. Living with symptoms of Hepatitis C was  honestly like living every single day of your life going through heroin  withdrawal or having the flu. I was in and out of hospitals with 103/104  degree fevers that the hospitals couldn't even break. I had constant  jaundice and was in pain nearly 24/7. Most days were full of nausea and  vomiting, diarrhea, incontinence, cold sweats, chills, loss of appetite,  extreme fatigue, and just overall lethargy. I was too ill to even hold a  job or enjoy any time given with my children.

Today I am not only recovering from these drugs, I am also recovering  from Hepatitis C treatment. This treatment consisted of 6 months of very  harsh medications. I was put on a triple therapy treatment. The  medications consisted of Ribavirin (Rebetol); an anti-viral drug,  Victrelis (Boceprevir); a protease inhibitor, and Peginterferon alfa-2b  (Pegintron); which is a form of Interferon and is a chemo drug. I had to  take the Ribavirin and Pegintron for a total of 28 weeks, and the  Victrelis for a total of 24 weeks. My treatment began in March of 2012  and ended in September of 2012.

I remember a conversation that took place while awaiting the bus to  arrive at the hospital after having some labs done during my treatment. A  young women approached me and after observing the bandage over the  crease of my arm, she asked; blood work?

I responded; yeah

She said; I just left the lab too. I don't understand why they can't  just use the butterfly needles all of the time to draw blood. It's less  painful than the big needle they usually use. I've been having blood  drawn since I was 12, and I never can get used to it.

I looked at her and responded; I know what you mean. But when they say;  get ready - big stick, I just brace myself and hope they get it right  the first time. I don't even watch anymore.

She asked; Are you on medicine?

I responded; yes.

We both just bowed our heads and shared in a moment of silence.

We knew.

We may have had different medical needs, but we knew.

The thing is, unless you are an individual who has to take daily  medications and make routine trips to the hospital and/or doctor, you  will never truly grasp and understand THAT silence. Unfortunately  though, many individuals do understand that silence. Could you imagine  that? To have to base your day around a mountain of medications? To have  weekly, bi-weekly, and/or monthly doctor appointments and labs? With  Hepatitis C (HCV) treatment, you better imagine it, because that is  reality.

My daily med routine was as follows:

- 6 AM -

*Rebetol (3 pills, daily)
*Victrelis (4 pills w/food, refrigerated, daily)
*B-Complex (1 pill, daily)
*Lexapro (1 pill, daily)
*Imodium (2 pills, daily)

- 9 AM -

*PegIntron (shot, refrigerated, every Friday)

- 2 PM -

*Victrelis (4 pills w/food, refrigerated, daily)

- 6 PM -

*Rebetol (3 pills, daily)

- 9 PM -

*Victrelis (4 pills w/food, refrigerated, daily)

Medications as needed:

*Promethazine DM SYP
*Sleep Aid
*Hydro-cortisone Cream

That was 20-22 mandatory pills a day and 1 shot a week.

This was my daily medication routine for 28 weeks on top of my many  doctor and hospital visits. This schedule seems reasonable right? You  could just wake up, take your 6 AM meds and go back to bed for a few  hours and embrace the remainder of your day right? You could just pop  your 2 PM and 6 PM pills with a snack, no trouble right? You could take  your 9 PM meds and go on to bed, get you a good 7-9 hours of sleep still  right?


It's alright, I thought it'd be that simple as well. Oh, but what a rude awakening I had...

Everyone reacts to treatment differently, but what we all have in  common, is the fact that treatment is no fun and is highly  unpredictable. You'll hear those of us who have gone through, or are  going through treatment, often say: The only predictable thing about  treatment, is that it's unpredictable.

For me, treatment was tough. Not impossible, or I would've never  completed it, but definitely tough. I struggled with insomnia,  exhaustion, poor judgement, inability to think for myself, speech  impairment, confusion, poor concentration, memory loss, weakness,  shooting; aching; burning pains everywhere, hair loss, nose bleeds, dry  mouth, cough, dry skin, sun burns, rashes, skin sores, rigors, fevers,  nausea, vomiting, diarrhea, rage, depression, nightmares, suicidal  thoughts, and extreme anemia to the point of almost needing a blood  transfusion.

Even with all the prescriptions and over the counter meds, nothing could  alleviate many of the symptoms I experienced above. I just had to tough  it out.

There is a plus side to all of the suffering I experienced though. I  have recently been given the news that my treatment worked, no more  Hepatitis C! I have achieved sustained viral response (SVR), or for a  choice of a better word...cured! Even STILL, I battle my demons to  prevent myself from going back to the very drugs that led me to become  ill to begin with. How many chances do I think I have?

I opened a door that should have never been opened in June of 2010. Not a  door I can just walk back out of and forget about or pretend never  existed.

Since treatment ended in September of 2012, I have regained much of my  health. I still struggle with some annoying post treatment side effects  such as insomnia, fatigue, and nausea. But all in all my health is  tremendously better now than it was for the 2 years prior. I have  accepted that I may never fully recover from treatment. My hair has  grown back to shoulder length and my strength has almost returned to  normal. Almost. My mental health has improved tremendously as well. With  the help of my psychotherapy, medications, and post treatment side  effects slowly diminishing. I have regained the trust of many friends  and family. I am back to work, part time, but it's a start. I recently  interviewed with a staff writer for a local newspaper and spoke at two  Anti-Heroin rallies. Lets just say, I'm far from the best public  speaker, I definitely should stick to writing. I communicate much better  that way! I even purchased my first car since selling my previous car  for drug money back in 2010. Things are gradually improving. Destroying  your life is the easy part, but recovery takes time and's  definitely worth the fight!

Relapses happen to some of us, but it doesn't have to define us, destroy  us, or set us back. Dust off and keep moving forward. A much brighter  future awaits us. Don't let the devil discourage you, because he is  going to try with every opportunity he gets. God is stronger. Hold tight  to the one who will bring you through. He loves you. I love you. Love  yourself.

Jennifer Elizabeth


I was born in 1984 and when I was 8 months old I was diagnosed with AML-  Acute myelogenic leukemia. I underwent a heavy regiment of chemotherapy  and received blood transfusions. Those things alone cured me of my  leukemia and I was in remission from that when I was 2 years old.
When I was a freshman in high school, I found out I had hepatitis C. At  that time little was known about it. I went and saw a hepatologist and  they said I wouldn't need to undergo treatment at that time.
My freshman year high school biology teacher pulled me aside after class  one day and asked why I was jaundice. I told her without thinking about  any issues that I had hepatitis C. She pushed her wheeled chair  backwards into the chalkboard and said I couldn't be at school. She  literally wheeled herself over to her telephone and called the  principle's office telling them I needed to immediately go over there  and talk with the principle and the nurse about being pulled out of  school. They in turn called my parents, my mom came to the school and  explained that hepatitis C is only transferrable through blood, so it  was of no concern. The teacher insisted my mom and I were mistaken and I  needed to leave. We left that day, and my mom (who also worked for the  school district) went to the superintendent at the school board for the  district and explained that the teacher was being discriminatory and if  anyone should be "expelled" from school, it was her. Sure enough, I  stayed and she left.
Somehow or another, word got out to my friends, my boyfriend, and  basically every kid in the entire school. It seemed to me at the time  like the gossip and lies about me had spread like wildfire. No one would  come near me, everyone was scared to be around me other than two senior  girls I became friends with. So, I sunk into a weird funk and just  spent time with them, always looking onwards to my usual group of  friends. I ignored the comments when I was in swim team practice that  they hoped the chlorine would kill any way of me giving them hepatitis. I  ignored the kids who purposely sat as far away as they could in class  from me. I ignored everyone except those two girls that be-freinded me  through it all. Freshman year ended for me and those two graduated. The  entire summer I spent alone, mostly in my room. I didn't want to talk to  anyone, not my parents, no one about it. That is until I got a call  from a long time friend growing up (who went to a different high school)  that his dad had hepatitis C and end stage chirrosis and needed a liver  transplant and he needed someone to talk to that understood. So, we  started hanging out and in a way we found peace and hope in each other  away from all the negativity of everyone else. Sophomore year came and I  was dreading it every day that got closer. This time around I knew I'd  have no one to talk to period, and it was depressing. My grades started  slipping, I didn't care about school, I didn't pay attention to anyone  or anything in class. I just remember sitting in every class, in the  back row corner, in silence. When semester grades came out, my counselor  told me I'd have to most likely take at least one extra semester of  school because I was falling behind. She also had me start talking to a  senior counselor. He had non-hodgkins lymphoma and was so kind and  became a very good friend of mine. I found myself hanging out with him  and trailing behind him like a puppy dog wherever he went, whenever  possible at school. I stuck it out until February that school year,then  got a call from a friend outside of school I'd also grown up with that  she was going to be homeschooled through a charter school as of the very  next day. I took that as my sign to get the heck out of public school,  and so I did. I ended up graduating a year early with a 3.8 gpa, and got  through 3 semesters of college while in school.
I met a guy in college and we ended up in a 3 year long relationship.  Meanwhile, my parents split up and my mom moved away. My dad got  together with another woman and basically all of this happened when I  was 17. I started treatment for hepatitis C, per my new  gastroenterologist. I went on what was available at that time- the  double therapy - interferon and ribavarin. According to my genotype (1a)  I was supposed to be on in for one year. My white blood cell counts  plummeted to nearly zero and I was put on neupogen. While they did raise  up, it was still in the danger zone, so I was cut off treatment at 6  months. I was basically in bed for that entire six months with no energy  and extreme pain from the medication.
I went through a few year period of self medicating with street drugs of  all varieties. My boyfriend and I split up, and I moved to a different  place on my own. I already had a promising career under my belt which I  managed to hold onto through all of it.
When I was 20 years old I met a couple and another guy who were thinking  of leaving the town we lived in and travel all over. I was intrigued  and interested in coming with them, but at the same time scared to leave  my "normal" life behind. So, they headed out on their own without me.  It wasn't long before one ended up in jail, the other went back home and  the third I literally ran into when walking around a corner. I was  shocked to say the least to see him. He told me of all the events, and I  ended up taking him in. He slept on my floor in my room for a few  months. We ended up getting into contact with the one that had been in  jail and about to be released. We ended up leaving together and meeting  up with him. Once again, the fellow that had been in jail was arrested  again after a few days. I lost my car in the whole ordeal and found  myself with my friend who has been with me on my bedroom floor, alone  and on the streets...homeless. We found a quiet area and a mattress and  slept in that little place for a few months. Meanwhile he professed his  love to me on the city train. He was always such a quiet guy and blurted  this out one day out of the blue. I was speechless and neither one of  us said anything for a few days. I finally spoke up and told him I loved  him, too...and so our relationship began.  In no time I got pregnant. I  quit my drug habit immediately. We lived on the streets for the first 7  months of my pregnancy and took a trip halfway across the country  through all of it. We ended up back at my mom and now stepdads house.   He got a job, and before we knew it, our daughter was born. Due to  hepatitis it was recommended I have a cesarean- scheduled.  I had a  cesarean, but she was born a month early. She spent 9 days in the NICU,  but came home finally and continued on to grow up to be a healthy child  as she is today.
Her dad continued his drug habit, lost his job, and I went back to work 2  weeks after I had her. We ended up leaving the area my parents lived in  and moved back to where we started. That ended in a violent episode  between him and I, so I went back to my moms place with our daughter. He  followed us there, claimed he had changed, and was let back in. We were  still living at my parents when there was another violent episode that  nearly ended in me losing my life. Instead, it ended in him going to  jail. He got out and told me I had to come with him or he would take  care of me for good and take our daughter away from me. So, I complied  and left with him. Again, we returned to our original home area.  We  then travelled further north and landed in Portland, Oregon. There was  more and more violence coming from him and I finally mustered up the  courage to leave him. I got a restraining order against him, involved  child protective services, who took legal custody of her until I could  gain sole custody of her.  He apparently, took off to the east coast and  I never saw him again. A year after the last time I saw him, he  committed suicide with a cocktail of drugs in his system. The coroner  said he also had hepatitis C, and considering what drugs he had in his  system, most likely contracted it from IV drug use.
I spent about a year on my own until I was introduced to a man who I  started dating. After about a year, we got married, and right around the  time we got married I got pregnant with my now youngest child. We moved  to a different area of the country together, which, after 6 months  failed and ended in abuse on his part towards me and my oldest daughter.  I gained full custody of our daughter, and have had custody of her  since. We moved back to my home town and I tried to start over. One  thing led to another and i found myself with two children living in my  friend's parents house.
Not long after I was living there I met a homeless guy, who also had  hepatitis c. We ended up getting in a relationship, moved to a  different, then moved to where we are now. After many years of total  lack of insurance, I am finally able to have insurance and start to take  care of my medical needs. It's come out of the woodwork that I also  have fibromyalgia, long term issues from chemotherapy, degenerative disk  disease, cervical disk disorder, Raynaud's Syndrome, hyperthyroidism,  hormonal issues, scoliosis, sciatica, vitamin deficiencies, and the list  goes on. He couldn't handle trying to take care of me and my medical  issues and the children, so he left. I am glad for that. As stressful as  it may be at times to be a single parent, I am free, I am happy and I  have my children and we share an unconditional love and unbreakable  bond.
I'm taking it one day at a time, like I always have. I've found looking  back never does any good. Looking forward can be stressful, too,  sometimes. But looking straight ahead, or sometimes down at your feet to  be sure ya still got them planted on the ground firmly is the only way  to go. Adventures, crisis, death, sorrows...this is all a part of  life...a part of my life I never would have experienced had the doctors  not saved me in the beginning when I had leukemia. Good bad or  indifferent I wouldn't change anything about my life. It hasn't been  easy, and it may get harder from here but I'm not going to worry about  what will come. I just worry about today, and am grateful I woke up this  morning and made it through another day with air in my lungs. I always  look at it as no one's life is truly any worse or better than the next  person's- we all have learning experiences, challenges, love, hope,  sorrow, and everything that life can throw at us- but they are all our  experiences and we can embrace them and take them in the best way we can  and learn so much about others and ourselves. No matter what happens in  your life, you have to fight for yourself and protect who you love and  that will give you undying peace and happiness. I am thankful for each  and every day, no matter what may happen.




My Hepatitis C Story

Lucinda Porter, RN

My hepatitis C story has many beginnings and no ending. I contracted  hepatitis C in 1988. In many ways, this was the beginning of a new life.  Up until then, I had been severely mentally ill for more than 20 years.  Unable to bear another moment, I made a final suicide attempt. It was  devastating, causing multi-organ failure, including liver failure; I was  told to say my good-byes, as I would not live another 24 hours. 

A miracle, the kindness of others, and a blood transfusion gave me  back my life. Why it took this much drama to wake me up to life, I don’t  know. What I do know is that my life began in 1988 in that hospital  bed. That is where I slowly emerged from mental illness, physical decay,  and soul-sickness. 

Hepatitis C virus was part of the deal, an unintended consequence of  the life-saving blood transfusion. This virus has been a great gift to  me. It reminds me to take care of myself. It is like a mantra  whispering, “Don’t drink. Meditate. Eat well. Go to bed early. Have fun.  Help others. Be grateful. Floss your teeth. Trust the process.”

I went to nursing school, later working at a needle exchange site  while undergoing interferon treatment. In 1998, I started writing for  the Hepatitis C Support Project (  and then landed a job as a hepatology nurse at Stanford Medical Center.  I lectured across North America, continued to write and underwent  peginterferon plus ribavirin treatment in 2003, but relapsed after  treatment ended. 

A patient once told me after his third hepatitis C treatment, “Never  give up. Three times is a charm.” While I know some patients who have  been treated more than three times, the third time worked for me. In  2013, I participated in a twelve-week clinical trial using sofosbuvir,  ledipasvir and ribavirin. After living with hepatitis C in my liver for  25 years, I have a 98% chance of being cured. This part of the story has  no ending yet since I won’t know the final results until late November.  

I know hepatitis C inside and out; it is my life’s work. Hepatitis C  binds me to others, and walking with patients as they go through  treatment is a deep privilege. This connection inspired me to write two  books, Free from Hepatitis C and Hepatitis C Treatment One Step at a Time.

My new book, Hepatitis C Treatment One Step at a Time is a  project that has been in my heart the longest. I wanted to find a way to  walk through treatment with patients. There are daily entries offering a  quote, encouragement, and practical tips to help patients stay on  track.

My first book, Free from Hepatitis C, provides concrete  information for patients to ease their treatment experience. I wrote it  because it seemed the most expedient way to pass along the knowledge  I’ve compiled from my personal experience and what I learned from  patients. 

I know that some people can’t or don’t want to go through hepatitis C  treatment. This does not mean giving up. In fact, having hepatitis C is  an argument for doing more to take care of ourselves. Free from Hepatitis C suggests ways to maximize one’s health while living with this virus.

My books and my work symbolize my belief that just about anyone can  endure hepatitis C and its treatment. If I, mentally ill, damaged, and  hopeless, can rise from the ashes, then so can you. You don’t have to be  strong or special, you just have to be supported, informed, and  connected to a source of hope. You don’t have to be especially brave;  you just need to be willing to accept a new beginning. 

My Own Story by Daryl Luster  

I was diagnosed with HCV after at least 3 years of having nausea,extreme  fatigue, and generally feeling like crap most of the time. A couple of  years before diagnosis I was admitted to ER for extreme abdominal pain,  and I spent 3 days in the hospital undergoing a battery of tests. Not  one of the tests were for Hep C. After being released from hospital, the  tests continued, to include a Colonoscopy, Endoscopy, etc. One thing  that came out of my hospital stay was that the surgeon who was attending  (who kept wanting to take out my gall bladder), said I should have a  hernia repaired. The following year, during screening for surgery, it  was determined that my Ferritin levels were out of site high!

This was an indicator that my liver was not functioning well in  respect to handling iron stored in the liver. I had too much iron  stored. Subsequently, after surgery,I was in for more blood-work that  found that not only were my AST and ALT levels high, but I tested  positive for the HCV antibody. This in itself did not indicate that I  had HCV, but the second test for viral load certainly did.

I was devastated by this news,

I was sure that I would die, and that it would be a dreadful death.

After spending some time with a good Psychologist, who helped me deal  with the anxiety I felt, I immersed myself in learning as much as I  could about HCV. 

I eventually joined a support group in a community nearby, and I also  joined an online support group, that consisted of other people who had  HCV, and many who had treated, either successfully or not. Some were  SVR, some were Cirrhotic, and people of all genotypes were in the group.  I should mention that I was Genotype 1a.

Being in a peer support group helped me immensely. As I learned more,  I realized that my diagnosis was not a death sentence-no way! There was  a chance that I could be cured, but that was not a word used then, as  it can be used now.

My biopsy revealed very little liver damage with a stage 0-1 finding.  This was very good news indeed, and I clung to every slice of positive  news I could find or learn.

My Hepatologist is involved in research, and being referred to him  was a stroke of good luck for me, as he was starting a clinical trial  and suggested me for it. It was a phase two trial, and there were not  many people who were participating, world-wide. I agreed to be part of  the trial study. It was not just for my own personal reasons that I  chose to participate. I believed that I was helping in forwarding the  research that would see better outcomes for people treating. I am not  lying when I say that I was looking for the best possible outcome for  myself, as I was only given a 30-40 percent chance with what was called  SOC then. SOC was Standard of Care and was Pegylated Interferon and  Ribavarin.

They now call that PR.

I did well in the extensive screening tests, and I was accepted to  participate in the study trial. I had mixed emotions, as anyone would in  the circumstances, but those soon faded away, as I readied to start  treatment. Eight months after diagnosis I started treatment with PR and a  third experimental drug. 

The first month was a hell like I had never seen in my life!

I lost 14 pounds in the first 9 days of treatment (Tx) as we write an abbreviation for treatment, in the Hep C community.

The second and third month saw me drop to a very deep and dark place  in my mind. This was a place I had never seen. I was an emotional wreck,  and I was determined not to use an anti-depressant. At 3 months into Tx  I asked for an AD as we call them. This did eventually help with my  moods, and after 6 months in Tx things kind of leveled off for me. I did  48 weeks in Tx, and I am clear since week five of Tx, which means that I  am undetectable for around 32 months….I am cured of HCV!

While I was in Tx I began to get involved in small ways to spread the  word about HCV, and to raise awareness about this dreadful disease.  Since my Tx finished I have become even more involved in advocacy, as  well as being in support groups, trying to help others that were like  me, scared about being diagnosed, as well as frightened about Tx. 

If it had not been for the people in the groups that I joined, I  honestly don’t know how I could have gotten through the whole ordeal  from beginning to now! There are so many wonderful people in the HCV  community, and I have been fortunate to meet some of them in real life. I  am a big believer in hope. I think that hope is the most important  thing that we need to hang onto, even when it seems like there is  none-there is!

Thanks for reading a bit about my own story, and I hope to write much  more in the future. Never give up or give in-keep hope in your heart.

 I was diagnosed in 1985 as having hepatitis non-a, non-b.    I was 20  yrs old & trying to "fit in" with the wrong crowd.  At the time, I  could have told you the date I got sick, as I turned yellow within 2  days.  I had regular blood work for months, then the doc said that  everything was fine, so I went on with my life.  Met my husband in 1988,  we married in 1989.  Fast forward to 2005, when I went to the go/gyn  for my annual.  My liver enzymes were elevated.  Months later I was  diagnosed as having cirrhosis and liver cancer.  I was told on December  7, 2005,  if I did not have a transplant that I had 3-5 years left.  I  went through the week-long pre-transplant evaluation.  The cancer wasn't  big enough to be listed, so I had to wait for it to grow.  I had an MRI  every 6 weeks for 6 months until it was bigger.  Meanwhile I started  treatment on Ribavirin & Interferon.  They stopped tx at the 12 week  viral load, because it wasn't working.  I had my transplant 10 days  after going on the list on July 9, 2006, ( got extra credit points for  having cancer).  I was having regular blood work done, and my liver  enzymes started to skyrocket.  I went in for a biopsy, and the hep c was  back.  This was 6 months after my surgery.  I had 5 biopsies in 6  months, so they could track my progress.  My kidney function was too low  to try tx again, because of my anti-rejection meds.  I had to wait 2  years for my kidney function to come back up to approx 50%, it was at  24%.  I started tx again with the same drugs in September 2010. I lasted  until the 12 week viral load, then they stopped tx because it wasn't  working.  Almost immediately, I started on Infergen which is synthetic  Interferon.  It lasted 4 weeks, then they stopped tx once again.  Not  working.  The doctors said that there was a miracle drug coming out soon  (Incivek) in May 2011.  I volunteered to be a guinea pig (the meds are  only FDA approved for pre-transplant).  My doc had to wait until there  was more info on post transplant patients.  I started tx again on  December 30, 2011, with the original 2 drugs..  I started on the Incivek  January 30, 2012.  I've been undetectable since the week 4 viral load. I  completed treatment on Nov 30, 2012.  I am now SVR.

Patti O'Brien 

 Marie Olsen    6:57pm Nov 19
Hi Daryl! I was a nurse for over 25 years and contracted Hep C through my job. But, I wasn't diagnosed until 2005. I worked "pool" which meant they put me where they needed me. I worked the Cancer floor with Aids patients for a while in the early 90's. I had a needle stick and a begruntled aids patient who would play with his stool, then sccratch nurses when they came in to help him. I was tested for aids and it was negative. One day in Feb. 2005 I was rushed to the hospital with 3 bleeding abdominal ulcers and 4 in the throat. That's when they told me I had Hep C. My mother died from Hep C, years of being diabetic and colon cancer. We didn't know any of these until the day she died. Tx did not work for me. Now, I'm waiting for a new liver. I"m just grateful I wake up in the morning, even through the pain & side effects of everything, including medication.

I've done some research and ask doctors a ton of questions. First. it is important to know that everyone reacts different to the diseases (Hep C and Liver Disease) and the medications. During treatment for Hep C, some people are bed-ridden, severly depressed, poor hygiene, low libido and extremely tired and many other things. Others have different levels of these symptoms and may even work through the whole tx. If tx doesn't work for you, the Hep C will continue to destroy your liver. Eventually, you are double wammied with these symptoms & medication side effects.

When you reach End Stage Liver Disease, your MELD score becomes very important. These are figured out by certain blood tests that are added together. The higher your MELD score, the closer to a need for transplant.

Personally. I am no longer allowed to drive due to abnormal protein levels. I have short-term memory loss, extremely lethargic, dry eyes, hair loss, swelling of extremities & abdomen, bone & joint pain and a gall bladder full of stones. (Just to name a few.)

A few reminders after a diagnosis of Hep C:
1. Have your entire family tested.
2. Throw out ALL razors and toothbrushes. Get new ones and do NOT share them with ANYONE.
3. Do NOT have sexual intercourse during your menstruation.
4. ALWAYS inform anyone taking your blood that you have Hep C.(Also inform your dentist, eye doctor or any other health care giver.)
5. If you have a hard time staying awake to work, fall asleep in the middle of the day or pain gets very bad, inquire about getting Social Security Disability (SSD).
6. Educate your family so they will be more supportive. (Remember, you may look like a million dollars on the outside. But, you're a mess on the inside. This makes it harder for some families to accept that you really are sick.)
7. If you have little or no insurance, get some friends to help you start fundraisers to help you with the cost of a transplant.
8. Keep copies of ALL bloodwork & tests. This will help in many ways to save you time. (New doctors, applying for SSD, etc.)

I hope this info has been helpful. Be strong, keep the faith and know you're NOT alone!

Your Friend,
Marie Olsen

My good friend Marie passed away this summer, and I was and remain sad  about losing her. She was a true fighter, and always encouraged me  despite her own poor health.
Marie my friend, you are missed and will always be missed by me and many others that you touched in your life.
Daryl Luster