Hepatitis C is a virus that is passed from one person to another through blood. The infection can be temporary, however most people develop long-term, or chronic infection. Over time, the chronic infection can cause scarring of the liver tissue which can cause serious liver damage, and can cause the liver to shut down. Living with Hepatitis C increases the risk for developing liver cancer. There is no vaccine to prevent hepatitis C, and you can never be immune. There is a cure!
If you have Hepatitis C is important to go to regular appointments with a liver medical specialist, avoid alcohol which can further damage the liver, and ensure your household members and intimate partners (sexual & drug using) do not come into contact with your blood, cuts, or sores.
Living with Hepatitis C? You are not alone!
Stories from the NYC Hepatitis B & C Stories Workshop…. want to work on your story? Contact Us and join the effort to raise awareness and support the community.
Contact the individual below for speaking engagements.
Tony is an advocate for the NY Organ Donor Network. Tony had many operations for bleeding ulcers as a young man and also worked in a dialysis center. Ironically, he later developed kidney disease, and eventually had to move into a nursing home to manage his grueling daily dialysis. He was placed on the kidney transplant list, and through the work-up was shocked to find out that he has hepatitis C. He was told he would likely be on the transplant waiting list for 7 years. One day, a social worker in the nursing home informed him that he could accept a kidney that was infected with hepatitis C in order to get a transplant earlier. Tony’s quality of life was so poor at the time that he decided to take the risk. Three years later, he has his life back. He is healthy, medically stable, and in school to become a Medical Assistant. He doesn’t know what the future holds, but this choice was important for his quality of life now. Become an organ donor today!
Try to teach somebody: they will resist.
Give to somebody advice: usually they will do the opposite.
Tell them your real life story: they might pay attention.
Here is my story. Most of the time, a successful business keeps up with inventory. Throughout my life, I kept up my health inventory pretty successfully: doing exercise, eating healthy, meditation… I thought my health was under control, but in fact I had lost control of the Hepatitis C I got a long time ago through reuse of a needle during a medical treatment in Russia. I am thankful to my doctor who finally convinced me to take a blood test for Hepatitis C. Ops!!!! My virus was 10 times more active than normal – it was bad news. The decision had to be immediate action: go for treatment.
I went on treatment without any suspicion of how hard it would be. I lost my appetite, lost a lot of weight, lost interest in anything except to prove to myself that I am strong enough to go through this. I just really needed to meet people dealing with the same situation or condition now or in the past. But I couldn’t find any. Where were the other Russian people with Hepatitis C? Were they feeling the same thing? I called the NYC Health Department 311 service for help and they guide me to the Hepatitis Program who guided me to a Hepatitis C support group in Manhattan. I started going to this group, which helped me get through my treatment time. Now, I want to send my message for those who are looking.
Keep your health inventory, it is your responsibility.
Never give up – know that help is around.
We will survive by helping each other.
Through participation in the Hep C Task Force & Stories group, Gregori has started a support and education group for the Russian Community in Coney Island. Learn more
About four years ago, in one of the newer subway cars, lit up so much you feel like you are in a fish bowl, I sat across from a poster with a man’s face, part of it looked, looked, well, like a burnt marshmallow. It said something like: If your face looked like your liver you would get treatment. No how, where or when. Gee thanks. I would, if I could, if I should.
Allot stuff in a short time led me to that point in life-less-ness, 31/2 yrs of stuff, not nice stuff.……I put my dog of 12ys to sleep, saw the second plane hit the world trade center & worked next to the city’s ME office, where, for years, they identified the remains of 9/11 victims.……I began to drink vodka, insane amounts of vodka.…….one, then the other person I worked for moved on, job got too hard, job got sabotaged, job got too easy, got no job…….pre- then full on menopause, which became disruptive then destructive. .…… short term, followed by working memory, began to fail…….poor long term memory since childhood…… my brain was being fried; sunlight hurt, florescent lights hurt…….I was thirsty all the time …. physically getting weaker……..had no emotional control…….my closest & dearest friend had been using me but I had no clue & out of the blue he publicly dumped me…..already a loner I isolated myself, no social support, no friends…..the craziness of speed abuse……It is so very easy to lose yourself in a city so big……..bursitis so bad I had to take crosstown buses……..Hep C diagnosed, high titer w/some liver damage……abdominal surgery: It’s damn hard to get out of the hospital when you have no one to pick you up……quit drinking…..immediately started sleeping ……then crying……crying, ridiculous public displays of emotion….low self esteem, no self esteem……so so soooooo tired….crying…….31/2 years……
Most likely I got the virus in my mid 20’s, but I hoped that I got it later in my 30’s when I worked on AIDS research projects with infected blood.
So I figured I had time, that odds were against successful treatment but better drugs were on the way. All alone I started to “fix” my apartment, look into other jobs, career changes & school. I tried to be self-employed. Initially found good dental care at schools but later had my gums mangled by a practicing hygienist. I was successfully evaluated for a clinical trial, but for some mysterious reason was not included. I looked into other ways to get medical care but was only able to find mental health care [later]. I bounced back and forth between chemical energy & pathetic lifeless recovery from the drug use from mid 2003 to mid 2007. Finally I stopped. My life, myself & my apartment were in embarrassing disrepair & remain so to this day. I had no sense of time & when I could make myself go out in the light what I saw had no dimensions [literally]. I went deeper into deep depression.
Less than a 1½ ago I got a dog, quit smoking & cut way down on caffeine. I already ate right & walked allot. I then got some mental health care, & have even gone to a Hep C support group. Age, drugs & alcohol use or lack there of, loss of estrogen, chronic infection, the ever popular stress & so on. Any, some or a combination have taken their toll. It’s hard to know. I still remain unemployable on so many levels. I can’t afford insurance& I am afraid to gamble with what little savings I have on anything other than current living expenses.
I may have come a long way, I’m clean, sober & able to read & daydream again but I am still sitting on that train, soooo tired with my side hurting looking at the man with the burnt marshmallow face wondering if I should & how I’m supposed to get treatment & pay my rent at the same time. One thing is for sure, I need a dog.
Since writing this story, Lo-Anne was successfully treated and cured of Hepatitis C at a public hospital. She is working so much, that she hardly has time for Hep C….
I was diagnosed in 2001 almost by accident. I had issues with my Primary Care Provider at the time and, decided to get a second opinion as to why I was so tired by mid-afternoon and needed naps after work. I found 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. I 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 they mailed out the results of these tests. 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. I didn’t have a lot of time to panic or get crazy. After we hung up, having made a follow-up appointment with the best liver specialist in Boston, I thought about what to do next.
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. If not for the nurses I worked with, and my co-workers at the time I’m not sure I would have followed through with treatment.
I started treatment and things got difficult as far as how I handled the side effects. 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 to family and friends. The majority of the people in my life had never heard of Hep C before, neither had I really, but many weren’t able to understand it either. 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. 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.
Things are great now, almost 12 years later my disease has not progressed, I am in great health, and my career in this field has only flourished. All because I decided not to let stigma, ignorance and fear get in my way. I got the best healthcare I could have imagined, and for that I am truly grateful.
Don’t let fear prevent you from living.
Paul is a Hepatitis C Health Educator at a Harlem Public Hospital. Contact Paul for speaking engagements.
CDC Project: Faces of Hepatitis
Following a diagnosis of HIV, Gloria Searson later learned of her co-infection with Hepatitis C. Gloria is the founder of the COALITION ON POSITIVE HEALTH EMPOWERMENT (COPE) is dedicated to the eradication of Viral Hepatitis and prevention of HIV/AIDS. Watch Video >
Jules Levin lives with HIV and was co-infected with Hepatitis C for 30 years prior to being successfully treated and cured of Hepatitis C. He is the founder of NATAP, an internet resource for global HIV & hepatitis conference coverage and information. Watch Video >