Diagnosed with Hep C in 2014
On a beautiful spring day in 2014, I worked all day, jumped on a train, and headed for a conference. When I got to the city, I walked to the hotel, which was about a mile from the station. It was a beautiful evening, so after check-in I went out for a walk and grabbed some dinner. I drank an herbal tea to help me settle for the night and around midnight I fell asleep. I was startled awake by people slamming doors in the room next to me. This was followed with music and more commotion. It seemed like each time I drifted off, something would startle me awake. I may have slept two hours all night. After an all-day conference that ended with dinner, I headed back to the hotel for the night. I was exhausted. I asked hotel staff to move me to a quieter room, which they did. I took a Benadryl to ensure adequate sleep. I had used Benadryl before when traveling for work and it never left me with a hangover in the morning. I was sound asleep by 9 p.m. At 6:30 a.m. my alarm went off for day two of the conference, but I could barely move to hit the snooze button. This cycle continued for two hours: the alarm, the snooze. I texted a co-worker explaining that I couldn’t make it to the conference, asked the hotel for late check-out, and passed out again. Eventually I woke up, packed, and dragged myself back to the transit station. I made it home around 2:30 p.m. and immediately fell into another deep sleep.
Thinking I had a flu bug, I called in sick the rest of the week. Although I had no fever, I had no energy at all. I knew something wasn’t right so I saw my doctor, who ordered blood work, thinking it was something to do with my thyroid. This was the beginning of more than three months of testing, working from home, and not getting any answers. I was exhausted, dizzy and had blurred vision. I was constipated for days at a time, and I went from not being able to stay awake to being unable to sleep. Somehow, I managed to take care of my 13-year-old grandson and work from home every day. I had to pay the bills and help my daughter, who was getting married soon. Also, I had to keep my medical insurance.
Still no answers. I would be sent to a variety of specialists, have a biopsy of a nodule on my thyroid, and receive a diagnosis of Graves’ disease before my doctor discovered that my liver wasn’t functioning well and that I had hepatitis C. The soonest appointment I could get with a gastroenterologist (GI) was three weeks away. It was three weeks of misery. I was still so sick, my brain was all fogged up, and nothing in my body was working correctly. When I finally saw the GI specialist, he looked at my chart, tapped my belly, and ordered more blood tests.
After being so sick and living for months with no answers, I had my answer, and I was overwrought from the reality of a hep C diagnosis. I can’t tell you how many times I examined my eyes looking for tinges of yellow. However, as usual, I put on my happy face and managed to support a special family event that took me out of town for two weeks. My next GI appointment was when I returned. My viral load was over 8 million and my liver enzymes (AST and ALT) were high. He referred me to an infectious disease (ID) specialist.
When I called the ID office, I asked the extremely sweet receptionist which doctor was the most experienced and who she would send her mom to if this happened to her. The doctor she recommended was booked solid for a month, but she said if I called her every morning she would get me in one of the offices as soon as possible if I would be willing to travel to the office with the opening. Two weeks later, I had an appointment with Dr. N. He entered the room with a huge smile. When he shook my hand, he covered it with his other hand and I began crying hysterically from a combination of his compassion and the reality of where I was. He looked me straight in the eyes and said, “We will get you cured.” He ordered a variety of tests and we discussed my options. I have genotype 1a and stage 4 cirrhosis, which is pretty serious stuff. After successfully completing the critical tests, I was quickly approved for Sovaldi and Olysio. On October 28, my 12-week journey to the cure began.
As I write this, I am more than five weeks into treatment and still pretty sick. I am still working from home and although I have had some OK days, I have had some bad days. I have lived with this horrible infection inside of me for probably more than 35 years. I wasn’t an IV drug user nor did I have any other risk factors, but I have it, and now I have to deal with it. This infection has played havoc on my liver and I am not healthy today. I am fighting it with the medications and trying to stay positive. Looking back, I can see all the warning signs that I never was able to put together before. Some of the ones that stand out are the fatigue (lots of different doctors’ opinions), itching (doctors told me this was eczema), and blurred vision.
Today I am so fortunate. I found this amazing forum full of people who I can ask questions, and who support me and who I can try to support back. They let me yell, and they don’t care anything about who I am except that I am fighting the same battle they are. It doesn’t matter if I am broke or wealthy, black or white, cured or still fighting. They are there for me without judgment and I can ask them anything I want to ask them.
About a week after I found them, I asked the members about who they disclosed having hep C to. I asked them how they told others and if I had to tell people. This infection carries a huge stigma and it’s scary. I must have had 10 different people tell me their own story about who they disclosed to and why. It really helped me to make my own decision about who to share with.
At weeks two and four, the hep C was nearly undetectable. The next tests will be at weeks eight and 12. I won’t consider myself cured until I am six months post-treatment with no virus. Right now, my liver is getting a much-needed break from the virus wreaking havoc on it; it’s not going to heal yet, but I hope it won’t get worse. My blood is still fighting to keep that little virus from replicating and I am trying to take it one day at a time. I never was a drinker so I don’t really miss that. I have to think about every little thing that goes into my sick body because I need to help it heal. I am learning what helps and what doesn’t; it’s a process. It’s crazy that it took me 56 years to realize that what I put in my mouth really impacts me every day but hey, it’s never too late to do the right thing.
Today I am fighting, and I will fight again tomorrow and each day after that. I have the support I need and I am not going to give up. If this combo I am on doesn’t kill the hep C, then the next one will. I will also be there to listen to someone else who got shocked today and learned they have hep C. I will find the strength and wisdom to get others to get tested. How many people in my generation are walking around with hep C and don’t even know it? That’s a number I really worry about. Get tested if you haven’t already been. Get immunized against hep A and hep B. Hold the hand of someone with hep C because he or she really needs your support.
More to come as I continue down the road to healing and recovery and that day I can say I am cured! Today I am still intimidated and anonymous when I blog, but maybe one day I will have the courage to come out from behind this veil without fear.
What three adjectives best describe you?
Strong, determined, empathetic
What is your greatest achievement?
My children and grandchildren
What is your greatest regret?
Not to have found that one person who will always be there for me and vice versa
What keeps you up at night?
My illness and not being able to care for myself or handle my responsibilities; losing my job and/or my health insurance
If you could change one thing about living with viral hepatitis, what would it be?
That I knew sooner
What is the best advice you ever received?
A Nelson Mandela quote I always try to remember: “It always seems impossible until it’s done.”
What drives you to do what you do?
Life is nothing if you don’t share your experiences with others and try to always make a difference in a positive way.
What is your motto?
Be the best person I can be every day. Learn from my mistakes, and instead of them being negative, I think of them as an opportunity to be a better person.
If you had to evacuate your house immediately, what is the one thing you would grab on the way out?
If you could be any animal, what would you be? And why?
I would want to be a service dog, as they have such meaningful lives. They can help make someone’s very tough life not only bearable but also happy.