Niagara Falls, New York
Diagnosed with Hep C in 2007
Today is a red letter day. I had an appointment with my gastroenterologist (GI), and we discussed my lab results after completing 12-weeks of hepatitis C treatment. The virus was undetectable! The doctor told me I would still need two more viral load tests. Assuming the tests are undetectable six months and a year from now, I will get to have the words “cured of hep C” put on my chart. I’m feeling stronger every day.
Looking back, I find that I have grown since the day I learned that I tested positive for hep C. Initially, it felt like the world was pulled out from under me. I was a mental wreck. However, I was assured there was treatment for hepatitis C, and encouraged not to give up. Fear overwhelmed me, but I wanted the best chance of a successful outcome with my treatment, so I tried to stay positive.
In 2007, treatment consisted of a weekly shot and daily pills for 48 weeks. It had a 48 percent success rate. I was told that I would feel like I had the flu, and to expect fatigue. Every day I told myself that the medication was helping to get rid of the virus.
I felt worse each day. About ten weeks into treatment, I was taken to the hospital because I passed out while shopping. Then one day, my pharmacy called to ask if I had stopped treatment, because they had received notice to stop sending the medicine. Caught off guard, I call my GI. He told me he took me off treatment because I was a “non-responder.”
I crashed after that. I retired from my job and moved back to my hometown. I was really depressed, and hospitalized for three weeks. I needed the rest. When I was ready to leave, the doctor said I needed to be medicated. I had a different opinion. My wife agreed with me, and demanded I be released.
The fury in my mind subsided. However, I still had this virus that was damaging my liver, and there was nothing I could do about it. I decided to change my view and decided to start living with the virus rather than trying to live without it. My health improved. I started meditation to reduce stress. I studied Buddhism, particularly the teaching of impermanence. This helped me stay in balance from 2007 to 2014. During that time, some new hepatitis C treatments came along, but each seemed more like poison then cure, so I passed on them.
In December 2013, my walking buddy showed me an article about the new hepatitis C drugs. The cure rate improved from 48 percent to 88 percent, and the side effects were no worse than the old hep C medicines. The best part was that treatment was only 12 weeks rather than 48. I called my GI to find out more about this. He didn’t know about the new drugs, so I sent him the article.
In March 2014, my GI called, and told me that the treatment was FDA approved. The new pill was $1000 per pill, and treatment would cost $84,000. I asked my GI if he thought my insurance would cover it. He assured me that it was more expensive to not treat me. I started the paperwork, and everything was put in to motion.
Two weeks later my insurance company sent me a letter denying treatment. Once again, I got a hard taste of reality. My GI said there was another treatment plan, this one using two pills. He submitted the paperwork to the insurance company, and two weeks later, there was another denial.
I had the right to appeal both decisions. I thought there was no way in hell that I would change their decision, but I sent in the appeal anyway.
The insurance company called, and asked if I could be available to answer any questions the reviewing doctors wanted to ask me. She said they would call at 2 PM. However, I got a call at 11 AM stating that a decision was made. Naturally, I assumed it was another denial, but she said that they ruled in my favor.
I started my treatment on May 2, 2014. Each week I felt worse. However, my two-week viral load was undetectable, so this is what I focused on. My lawn got tall and chores slipped a little, but it was all for a good cause.
This is all behind me now. I am cured, and don’t have an invader damaging my liver. I have turned a page. The discipline I developed through this will serve me well in my new future. I can open my heart to others, something which before felt impossible. I wish that everyone could have the same results, found in your own way.
This has been my journey for the past seven years. I point forward, ever onward.
Blessing all, fare well...
What three adjectives best describe you?
Alive, healthy, happy
What is your greatest achievement?
What is your greatest regret?
None in the present; the past cannot be changed
What keeps you up at night?
My mind is empty; I sleep well.
If you could change one thing about living with viral hepatitis, what would it be?
Maybe discovering to live with the virus sooner than I did
What is the best advice you ever received?
Don’t believe everything you think
What drives you to do what you do?
Celebrating life, being friendly and helping where I can
If you had to evacuate your house immediately, what is the one thing you would grab on the way out?
Me; possessions can be replaced
If you could be any animal, what would you be? And why?
I like being human
Niagara Falls, New York