Eileen’s Story: A startling blood test, hep C clearance, and launching a support group.

We are thankful for Eileen Abrams’ sharing of her story, as we believe in the importance of being tested for hep C even though it can be stressful. We know a positive antibody test does not always mean you have chronic hep C. Elieen shares her experience with us.

After having blood work done my Doctor calls, I need to come in for a visit immediately. I wasn’t really concerned as I had been anemic as a child and thought I needed some iron pills. When I was called into his office he seemed very serious as he tells me I tested positive for Hep C. It didn’t upset me as I didn’t know what Hep C was, figuring he would give me some meds to clear this up. He then tells me he is sending me to the top liver doctor at UC San Francisco Medical Centre. I suddenly realized this could be serious, and after discussing this with me he informs me that I could die from this virus and probably have 20 years to live.

On the way home to Oakland where I lived, I started to panic. After doing some research on my computer I completely freaked out. I felt that I had an enemy inside of me that I had to get rid of. My appointment with the specialist wasn’t for another week, and I knew I needed to talk to someone who had this virus. I then called The American Liver Foundation in San Francisco and they suggested I call a man who was going through the treatment. The conversation I had with him was very disturbing when he told me I will probably die from it.

The Doctor at UCSF Med Centre was very kind and explained they were doing another blood test that would define whether I did have the virus and what stage it was at. This was a very difficult time for me as my sister who lived in Montreal was dying from breast cancer. On my way to see her, I get a call from the Doctor telling me that I had been exposed to the virus but my body had cleared it naturally. I was filled with joy and sadness as my sister passed away before I reached Montreal.

I’ve always felt that certain things happen for a reason and I knew I had to give back in some way. I felt there were others out there with the virus who might welcome some support and I created a support group by telling my story to the media. I as well reached out to Bay Area Rapid Transit and was able to put huge posters on 140 trains for three months of the year for six years and a number for them to reach me at. I was overjoyed at the results. We met once a month at Kaiser Hospital in Oakland.  I chaired the meetings and people were relieved to have a safe place to talk about their condition. We shared information on meds, diet, fear of what the future held for them as the treatments were very harsh 20 years ago. Some people became very good friends and others were just happy to have a place to share their feelings.

I realize that for the six years I ran the support group it was very helpful for those who were at different stages of the disease. 

Alicia’s Story: My Hepatitis Journey

The cruel fact that Hep C has been stigmatized, previously relegated to the shadows, and in general health forums ignored… has been a disservice to me in my life and any others just like me or you who are/were Hep C positive and never knew.
For years I had symptoms that doctors blamed on other things, and I, not knowing anything about Hep C at all, like most people-believed them. And for that I suffered.
For years I was always exhausted. When I worked, when I rested, when I went to sleep, when I woke up.
And I was anxious, extreme bouts of anxiety that came and went. Ongoing UTls every 4-6 months, and rounds of antibiotics. The last few years before my diagnosis, I had stomach problems with most things I ate, a slightly enlarged kidney, a tiny amount of fluid around my heart, and a higher than normal white blood cell count. Which was indicative of my body fighting an infection. All told to me but never explored.
I went repeatedly to multiple doctors saying I thought something was wrong with me and was patted on my head and told I had anxiety, panic disorder, agoraphobia, and mental health issues.
Finally in desperation I asked to be tested for STIs. That is how I found out I had Hepatitis C. The way was told was traumatizing. He was old and rude with a scowl. “The good news is you don’t have AlDS, the bad news is you are Hep C positive. What street drugs have you done?” He refused to believe I had never used someone’s needle for a street drug and kept insisting I had to have. I left there with a pamphlet he handed me knowing nothing more and feeling ashamed, as his receptionist stared at me with a look of pity and disgust on her face. I thought I was probably dying.
I actually feel embarrassment when I say it was traced back to a blood transfusion in the mid-1980’s because, though I want baby boomers to understand there was a time when blood transfusions contained Hepatitis and medical sterilization of instruments for surgery and such was not careful, I also know in my heart that it does not matter how a person got this chronic deadly disease and victim blaming/shaming is wrong, unhelpful, and indeed very hurtful.

Finding Help4HepBC was crucial for me. I was taught about Hepatitis truthfully (not google search BS) and was reassured I could do something about it, and was not judged there. I was directed to where found immediate care and approved for Epclusa, and Hepatitis C medication I took once a day for 12 weeks. I had few side effects, some headaches and itchiness was all. I am now Hepatitis C free, I could say cured, but will always test positive for hep C antibodies, as anyone who has had Hep C will.

It has taken a year and a half to feel lots of energy again, for my tummy troubles to go away, my eyelashes to grow back long and thicker, and my hair to grow shiny. This summer mosquitoes feasted on me. I was extremely lucky to have had little liver damage.

A test can save your life. Anyone can have Hepatitis; anyone can take medication and be healed. So just go get the test.

Thank you so much for letting me share my story with you.

Resources that may help:
If your story has similarities to Alicia’s, or you want to learn more, these links may help:

Anonymous Story: Choosing to find humour in my hep C story

Do You Want to Hear Something Funny?

I arrived back in Canada after a 6-month vacation in South East Asia. I made an appointment with my GP to have a full medical done. This included blood work, STI, and a pap exam. Ready for the pap exam I was in the expected position on a metal examination gurney, naked but for a paper gown, feet secured in stirrups, legs spread. Any woman who has had the procedure knows just how vulnerable one tends to feel.

As my GP got ready to proceed, warming the speculum and checking my chart, she started to read out the results of my bloodwork. “No gonorrhea, no syphilis, no hepatitis A, no hepatitis B, no HIV, positive for hepatitis C.” she relayed without missing a beat. She continued on with the pap exam. I was shaking like a leaf and unable to fully comprehend what she had just relayed to me. I was fully expecting a clean bill of health. What was this hep C?

Similar to many baby boomers I was unaware of what hep C is or what it means to have the disease. Being on the laundry list of things tested for I could only think the worst in the vulnerable state I was in. Hep C was in the same breath as HIV.

My doctor finished my pap and suggested I make a follow-up appointment. She never gave me any information or advice on hep C. I left the office upset and confused to say the least.

On my next visit to see the doctor I had a number of questions for her. Googling hep C resulted in me reading older reports of interferon, exorbitant drug costs, and a lot of misinformation. I had many questions. I also wanted to be referred to an infectious disease specialist.

During this appointment my doctor suggested that I stay off google. She provided me with zero information on hep C. She flat out refused to refer me to a specialist. She told me she didn’t’ know how to read and interpret the hep C viral load report she recently received. She printed a copy, thrust it into my hands and asked me if I could interpret the report. Huh?

One Year Later

I can only see this misadventure as humorous. Anything else would be demoralizing and self-destructive. Once I calmed down from the shock of the news and got some concrete, up-to-date information on the disease I decided to take things into my own hands. (At this point I would highly suggest speaking with a knowledgeable support group, like Pacific Hepatitis C Network, or a well-informed healthcare professional.) One must be prepared to be one’s own advocate with medical situations. I took myself to a downtown Vancouver hospital and begged for help. I was rapidly tested, examined, and started on a 3- month regime of Epclusa1. Six months post I am pleased to say that my viral load is 0 and I am hep C free. I now have a new GP.

1 Epcluse is a new Direct Acting Antiviral medication from Gilead Sciences, Inc.

Sarah’s Story: Pregnancy, undiagnosed hep C, and a healthy baby

I got a letter back in 2002 that I was one of the ones with hep C from a blood transfusion in 1984. It was a general letter and no more information was given. I remember asking my family doctor back in Ontario and her exact words were “You’ll be fine; Pamela Anderson has lived with it, so has our mayor Mel Lastman”. She spoke to me about treatment which at the time was injecting yourself with needles and it was a case study. No confirmation or further information was provided. There was no follow-up care for hep C.

When I got pregnant I started having elevated heart rates (when my doctor would take my pressure during my visits here in Alberta). That led to me throwing up all the time, after meals. There would be traces of blood in my vomit. After a week or so, it came to the point where my stool started to smell like blood, it had a coffee bean colour. I started to become constipated, and throwing up, at that point I couldn’t keep anything down.

One day I woke up and threw up blood, just blood. I didn’t know what to do, and my husband was in BC at the time. Then another time, and another time, to the point where I was so weak I asked my neighbour to take me to the hospital. Immediately the nurse saw I was feeling ill and they listened to baby’s heart beat and took my blood. No one told me what was happening, and I threw up a fifth time.

In the hospital, again, all blood. All of a sudden, a bunch of people and a transport bed come into my room. The EMS transport guy told me “Your hemoglobin is low, you’re bleeding from the inside we just don’t know where”. I called my husband right away and he didn’t know what to say; he was shocked like I was.

When I got transferred to Lethbridge they had to give me a blood transfusion and since my blood type is rare, they actually had to find it. They tried an endoscopy on me but were unsuccessful. They had to transfer me to Calgary for emergency surgery to close my varices.

I was under supervision by my hematologist and the discharge doctor. While I was in the hospital a little over a week I had 3 endoscopies, and they were so uncomfortable.

During my diagnosis and stay at the hospital. When I was told it’s from my hep C and cirrhosis I was given a weird look. They have never seen a case like this before and they were probably thinking I wasn’t being honest at how I got my hep C. They wanted me to come back and stay at the hospital because they were scared for another bleed. That didn’t happen. We went back weekly for monitoring. It was a crazy long, difficult, and financially hard time.

My son was born at 36+6 weeks via c section and is hep C negative.

I recently treated, and I am now free of hep c, but I do have cirrhosis.

If you have been tested, seek out care if you haven’t already. If you have not been tested and think you may have a risk, get tested and hep C is curable.

Resources that may help:
If your story has similarities to Sarah’s, or you want to learn more, these links may help:

Welcome

Lived Experience is a Pacific Hepatitis C Network project to allow the sharing of stories about life with–before, during and after–hepatitis C. Whether you have recently learned you have hep C, have successfully been treated and cured, have a loved one who has experienced hep C, or have another experience related to lived experience of hepatitis C, our community would love to hear from you.

Use the Stories tab to find stories others have submitted, and use the Share Your Story tab to send your story to us–you are welcome to share it using your real name, anonymously, or under a pseudonym.

Your story can make a big difference to someone else knowing they aren’t alone in their experience with hepatitis C. Whatever your story is, it is important–even if you feel like it is “not that big of a deal”, it may help someone else who is facing a similar circumstance right now.

If you need peer support in navigating hepatitis C, consider reaching out to a peer navigator at Help4Hep BC.