I was diagnosed in March of 2001 almost by accident. At the time I was experiencing issues with my PCP over the way I was feeling physically. I couldn’t get him to listen to me. During this time I decided to get a second opinion. I was continuously so tired by mid-afternoon and needed naps after work. I was given a name of a new doctor and she was very pro-active; after listening to my past history and other information I provided she decided to get to the root of things. Together we couldn’t understand why at my age, at the time, I was worn-out, she gave me comfort while waiting for lab’s and other test results to return.
Back then the Health Department in Boston mailed out the results of these tests but the day I got the letter in the mail I also got a phone call from my doctor, actually while I was reading the letter. With no time to panic or get crazy we made an appointment with the best liver specialist in Boston. And so it began.
The irony was I had been hired as the Hepatitis C Specialist for the City of Boston and was in the process of learning about this virus. Then BAM! I get my diagnosis. I was stunned at first because after being healthy for so long I immediately thought I was no longer healthy and that I was in trouble. If not for the nurses that I worked with and my co-workers at the time I’m not sure I would have followed through with treatment. It was extremely overwhelming for someone who is always “in control”.
When I first started treatment soon after my diagnosis things got difficult as far as how I handled the side effects. I was informed that the side effects may be difficult but I wasn’t as prepared as I thought I was. The smartest thing I did at the time was to join a support group and share my experiences with others and a medical provider that was able to answer my many questions. During this time I had issues with disclosing my diagnosis with family and friends. The majority of the people in my life had never heard of Hep C before, neither did I really, and many weren’t able to understand it either. Immediately after disclosing my phone rang less, the people who I spoke to daily turned into weekly conversations that were brief at best. My family was also hard to educate, given the culture I was born in I wasn’t really surprised. I again found myself making others feel ok, about my diagnosis and continued to receive less support. I learned many lessons during this time and as difficult as it was I stuck things out, many times alone, but remained compliant with my treatment regimen and after 6 months it was determined that I was not responding to the treatment and discontinued it all together. I went on a few other studies after about 3 months but they didn’t really help much either. I had no idea I would eventually go on treatment again 7 times over the next 15 years.
New Surroundings. New Disappointment
Fortunately during this time my disease didn’t progress. I was in great health and my career in this field had only flourished.
In 2010 I decided to follow my goal of living in New York City. I had recently graduate from college and felt the time was right. My health was good, life was good so I took the risk. My plan was to live my life to the fullest which included living with Hepatitis C. Not letting my disease control my life. My doctor in Boston gave me the name of a colleague of his here in New York City that he felt would take good care of me. He was right. I called that doctor and made an appointment after I was settled into my life here and then was ready. At this time I was due for another liver biopsy, back then it was recommended that you get a biopsy every 5 years. I had the procedure and then was offered another treatment regimen, I didn’t spend a lot of time thinking about and agreed to start yet my 8th treatment. After 3 months I received a call on a Friday night at around 8pm, I was at the gym, from my doctor telling me that this treatment wasn’t working and rather keep me on it and risk becoming resistant to the medications I should stop.
The frustrating part of the multiple treatments was that my particular strain of Hep C did not work well with the few medications available so after I failed a treatment I would have to wait up to 2-3 years before a clinical trial would be available. Fortunately for me I didn’t drink alcohol, do any illegal drugs or smoke cigarettes, I believe that had a lot to do with my disease not progressing.
Remaining True To Myself
During all of this I worked very hard on remaining positive and not letting these disappointments keep me from living my life. I didn’t allow the stigma that comes with illness affect me, I was very careful who I disclosed to and would never let this illness define who I am as a person.
In 2014 I was talking to my doctor about the new drugs that were just entering the market and showing great results and half-heartedly said something like “let’s give them a try and see how long I last”. I was getting a little exhausted trying the medications and having side effects that caused me to go on different medications. With all of that I decided to start my 8th treatment! Fortunately this time the treatment would only be 12 weeks and there would be no Interferon, which made treatment more tolerable.
I immediately started to respond, within 2 weeks my viral dropped significantly. But I was apprehensive. Part of me was waiting for my viral load to spike back up like it had so many times. It didn’t. It kept going down week after week. When I reached the my final days of treatment I was still feeling some of the symptoms the virus causes and I had some minor side effects from the drugs, I wasn’t sure if it was working. My doctor assured me I had responded very well and she felt that I was going to finally be successful. But I had to wait. I had to wait for 3 more months to finally get the chance to hear the 2 words I thought I would never hear. You’re cured.
My first response was “are you sure, are you really sure”? Historically I was a non-responder to practically every drug out there so it took a little while to register that I just beat this disease. I won. I’m cured!
Life After The Cure
It’s been 16 months since I have been cured from Hepatitis C and to say things have changed would be an understatement. I no longer feel tired, my joints don’t hurt like they did, I don’t have to worry about disclosure and best of all, I don’t have liver disease. I still take care of myself by abstaining from alcohol and illicit drug use, 26 years sober, I still don’t smoke cigarettes. I try to eat healthy and I entered my 50’s healthy and disease free.
Things just get better all the time, my outlook on life has changed also, I no longer worry about getting older and how this virus will impact my future. My family is happy for me, my friends are as well.
I have a great job as the Community Outreach and Education Manager at the American Liver Foundation here in NYC educating people about hepatitis and liver disease. I have been fortunate to go to Washington D.C. and meet with our nations elected officials to advocate for treatment access and testing guidelines to be implemented to ensure every US citizen has access to getting tested for Hepatitis C.
All of my successes, gifts and opportunities are a result of not to letting stigma, ignorance, and fear get in my way.
I am grateful that I found to I had this virus when I did. And I am even more grateful that I never let it take control.
Don’t let fear prevent you from living.
I no longer have what I called “Hep C Days”, I now have “Hep C free Days”!
Last Updated on April 16, 2020
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