Okay, here I go! I have often had people ask me, "Why don't you write about that, Sylvia?" I smile with the same reply: "I will," knowing damn well that writing is not my strong point. Hey, that's Enid's job, not mine. But just for today, the need to express myself is great.
For many years, I have advocated for things that are needed to help make life easier for those living with HIV. Today, my story has to do with HIV/HCV co-infection. I remember how I felt 17 years ago, when I was told, "You have AIDS; you're going to die. Do you have any questions? Have a good day." No information about AIDS, no support. Now I am facing another serious viral infection. This time I am not waiting five years to talk about it.
It's funny to me that my anger towards HIV turned into a positive emotion that got me to where I am today. I believe that fighting is also going to get me through HCV. I was told years ago at the doctor's office, "You have hepatitis C." Just that. Once again, no information. I did not think anything about it since it seemed like no big deal to the doctor. So why should I worry, right? Wrong! Today it's known that for every case of HIV infection, there are four cases of HCV. It's also estimated that 30 to 40 percent of all people with HIV are co-infected with HCV.
Now, I have been off HIV medication for three years. Yes, three years, something that most doctors would tell you not to do. But my counts remain stable. I know that some day I might have to get back on medication. But the reason why I write all this is to say: I am in charge of my body and health.
I want to live, so let the fight begin. I have started my treatment of Peg-intron (one shot a week), along with Rebetol 200 mg capsules. I take three Rebetol pills twice a day, in the morning and in the evening. My doctor and I have been working together for this treatment in advance because the side effects are so severe. I was put on an anti-depressant, Effexor 150 mg a day. What was I told to expect? Fever, aches and pain, loss of appetite, depression, damage to the red blood cells and bone marrow, and thyroid problems. In other words, expect the worst and hope for the best.
I want to stress what I feel is the important part of this treatment. My frame of mind and attitude is the key. I had made up my mind to do away with this hep C and not allow myself to become suicidal. Here I was on my third cycle of Peg-Intron, and with little to no side effects at this point, I thought I was being given a placebo. Later I had aches and pain, flu-like symptoms. But 15 years ago I kicked a $400 a day habit in a cold jail cell, with pneumonia and my period. This is nothing compared to that. And flu medicine helps a lot.
I work full-time, I am involved in this committee and that one. I have a full house with grandbabies to keep me smiling. So how do I fit this treatment into my daily activities? I started by involving my children and loved ones. We held a family meeting. We went through all the side effects and how we can work together to make this process go as smooth as possible. Then I told my boss along with my co-workers, and I am getting a lot of support from them as well. I have a great caring and loving doctor, and that is very important.
I do not allow my mind to think of the treatment I am on. I take my medication and if I am not at work, I am playing games with the kids. I have even joined a health club. The only thing that I am aware of is that I lost six pounds in one week. With that, I hope to lose 50 more pounds and bust out with a new look and the great feeling that I beat this virus.
My hope is that for anyone who is considering going on treatment for hep C, to work out a plan that will help things run smoother. Don't think that because other people were not able to tolerate this treatment, that you will not be able to either. Just like treatment for HIV has different side effects for different people, so does the treatment for hepatitis C. I still have an open mind and know that I can get sick, but until that happens, I do not sit around waiting. I continue on with life and plan to come out of this on top.
Sylvia O'Shaughnessy is Associate Program Director at Test Positive Aware Network. Her sister Enid Vázquez is associate editor of Positively Aware. Although Sylvia has genotype 1 HCV, which does not respond very well to treatment, her liver enzyme elevations have been dramatically reduced. E-mail Sylvia@tpan.com.
Editor's Note: Good news: after three months of treatment, her hep C viral load was undetectable, and was still undetectable after six months, despite having type 1 hep C (which normally has a lower response rate). Her HIV viral load is down, too, so her doctor, Todd Hargan, thinks the hepatitis treatment is doing something for her HIV, as well. Because she's doing well and side effects are infrequent and weak, he'll keep her on the year's course of treatment, which is standard for genotype 1-EV.