Diagnosed with Hep C in 1993
I had my gall bladder removed when I was 23. At the follow-up appointment, the doctor asked if I had ever done or lived with anyone who had used intravenous drugs. My chest tightened, and I couldn’t breathe, because I thought he was going to tell me I had HIV. A high school friend had HIV, and he was gone in a year. When the doctor said, “You have elevated liver enzymes, and I would like to test you for hepatitis C,” I was so relieved.
I was in college at the time, and my son was just 2 years old. He was tested and fine; we had a nice little life going on. I didn’t know much about hep C at the time. However, a year after college, I got a job in the viral hepatitis program at the Alaska Native Medical Center. The day before I started that job, my son and I were carbon-monoxide poisoned. I have a strange cloak of protection; God is good.
While working there, my colleagues learned about my hep C status and helped me through it. We had many amazing studies and programs, including looking at ways communities could reduce the spread of viral hepatitis and HIV. I saw how liver disease affected people and their families. At that time, interferon was the standard treatment, and our patients had a difficult treatment. I didn’t want to take interferon. I knew I was lucky. I didn’t live a drug-using lifestyle, although I had when I was a teenager. I maintained my health, enjoyed my family and listened when my boss told me not to let my status get to me.
In the midst of this, I was having neck problems from an old gymnastics-related injury. I was in major pain. I was exhausted all the time and assumed it was related to my neck problem. At the same time, my health care team suggested hep C treatment. They were starting to see that people with even mildly elevated liver enzymes were developing hepatocellular carcinoma (liver cancer).
I opted for neck surgery, rather than the hep C treatment. The procedure went well. The doctor was awesome, but a few months after my surgery, the pain came back with a vengeance. The bone plug used in my surgery was gone. I had a second surgery, and the second surgeon used the wrong-sized instruments in my neck, causing my C5 to snap in half. (He went on to leave a sponge in someone’s brain.)
I was in unrelenting pain. I started researching bone decompensation and found that I had received an illegally harvested body part from Biomedical Tissue Services. (Google Michael Mastromarino to learn more about this.) My life was taken up by court cases, medical problems and the pain medications I took, and I couldn’t reconcile any of it.
My surgeon hired an ear, nose and throat surgeon to ensure he didn’t cut my vocal cords, because by the time I had the third surgery, my neck was crooked in the front and filled with scar tissue. I was also given a bone-growth stimulator. It took a while, but things started to normalize after the third neck surgery; I started to heal. However, my life and body bore the scars of a hard-won battle.
It was finally time for my hepatitis C treatment; I did triple therapy (peginterferon, ribavirin and telaprevir). Treatment was stopped early because of complications. My temperament changed. I had posttraumatic stress syndrome before, but this was beyond anything I had ever experienced. I couldn’t go out in public. A year or two went by, and it was time for a second treatment. I still had to take interferon and ribavirin. I cleared it by the fourth week and completed treatment. However, I didn’t permanently clear hep C. That would come later. In 2014, after 12 weeks of sofosbuvir, peginterferon, and ribavirin, I finally cleared.
After many years of medical treatment, interferon and trauma, cannabis has helped me reduce the amount of prescription drugs and narcotics I take. I’ve studied cannabis use, policy, laws and its social impact. If you have a medical condition and decide to try cannabis, there are things you need to be aware of before starting. First, speak openly with your medical provider and create a plan that will work for you. There are doctors who will support you, but there are many who won’t risk their licenses. Being respectful of this can help you shape a better, more honest relationship with your provider. Be sure you obtain cannabis that has been tested for molds and mildews. Also, obtain cannabis that has been tested for the active ingredients that can help reduce exposures to molds since these are dangerous for people with certain medical conditions.
Now that my life is getting better, I see decriminalization and legalization of cannabis as an avenue for creating healthy policies and programs for people who may benefit from cannabis. Lawmakers, medical providers and community health workers have an opportunity to provide innovative community-based drug and health education. It is time to change the stigmatizing, shame-provoking conditions of cannabis treatment and create safer avenues for reducing infectious disease.
I recommend hepatitis and HIV testing for everyone. Testing provides a way to improve the lives of people affected by these diseases and identifies outbreaks that are occurring under our noses. Get tested and treated, and move on with your life. If you can’t get treated, contact the Center for Medicaid and Medicare Services, your state’s Drug Utilization Review Board, your insurance provider or a patient assistance program. No matter what troubles you face, things change—sometimes dynamically. If you are afraid to do treatment, know that hep C drugs are safer and more effective than ever before.
If someone asked me 15 years ago what I’d be doing now, I would have said “Working in telecommunications, climbing up towers and fishing in remote areas.” However, God had different plans for me. They say God moves mountains, but you only see that when they are behind you. Clearing hepatitis C has changed my life. Recently, I learned how to meditate. I know that with gentle guidance and working together, we can achieve so many more things together than we can alone. I am grateful to be able to tell my story, to speak for the many who didn’t.
What three adjectives best describe you?
Inquisitive, tenacious, introverted
What is your greatest achievement?
Raising my son
What is your greatest regret?
I am not sure I have any. Although much has happened, even the tough stuff and the wrong choices brought me to a place where I can be of better service.
What keeps you up at night?
Watching people get denied health care because of insurance issues and not having a voice to address issues they may be experiencing.
If you could change one thing about living with viral hepatitis, what would it be?
Allowing early treatment for people with hepatitis, which is critical to their health and welfare. Raising awareness about the value of living a healthy lifestyle if you have hepatitis; this can help prolong the health of your liver and ensure you make it to treatment.
What is the best advice you ever received?
Getting infected with hep C could happen to anyone and not to allow the stereotype to get me down and to keep living and enjoying life in a healthy manner.
What person in the viral hepatitis community do you most admire?
What drives you to do what you do?
Not having resources when I was the sickest; no one should have to walk up to the edge of death and look down in order to get treatment.
What is your motto?
There is a purpose for everything; it is up to us to change our perception enough to work through whatever is in the way.
If you had to evacuate your house immediately, what is the one thing you would grab on the way out?
My cat, Rafiki
If you could be any animal, what would you be? And why?
A bear or a bird. I like the massive feeling and power associated with a bear but also love to watch things from a distance.