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"..in 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...
COREEN'S HEP C STORY
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.
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.
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 back....fast 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
JOURNEY THROUGH ADDICTION, HEPATITIS C, AND RECOVERY:
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 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
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 patience...it'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.
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 (www.hcvadvocate.org) 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.
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!
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.