Living with HCV (hepatitis C virus)/HIV co-infection can be very challenging. Along with our physicians, we are learning about co-infection and living with it day-to-day. In addition to living with our dual illnesses, many of us are also dealing with recovery and mental health issues. I personally am living with all four of these conditions. Every day I am challenged to stay clean and sober and mentally fit. I approach life one day at a time, and I try to apply this principle to everything I encounter. So when the difficulties stack up, I deal with them one at a time. I would like to discuss a few of these challenges and my approaches to conquering them.
Maintaining sobriety certainly is a challenge that I encounter on a daily basis. To me, this is invaluable. Without my sobriety I have nothing! I spent many years trying to get clean and sober, and I know that a healthy lifestyle is impossible if I'm using. I remember lying in an alley crying while shooting up because I did not want to do it anymore. Getting arrested was a relief. At least I would have "three hots and a cot." I also wanted to believe that the police cared.
It took me many years to admit, and understand, that I was powerless over drugs and alcohol; but once I did, my life took on a different meaning. Today we have many programs, including abstinence-based 12-step programs, harm reduction programs and recovery homes that can assist us in our quest for sobriety and a healthy lifestyle.
Recovery homes can be a valuable asset in establishing a strong foundation, and obtaining the support that a person needs for sobriety. Most recovery homes model themselves after the 12-step program of Alcoholics Anonymous and Narcotics Anonymous, and require that you remain drug and alcohol free. If a relapse occurs, they will simply ask you to leave. This happened to me many times, and at the time I did not understand why. Harm reduction programs were not available to me at this time, so I felt rejected every time I was asked to leave a recovery home because of relapse. I asked the director of one of the many recovery homes that I participated in why was I being asked to leave, just because I relapsed. My argument was that if drug abuse and alcoholism is considered a disease, relapse is a symptom, and should be treated as such (compassion). Her response was simply that within a therapeutic community there needs to be consistency (zero tolerance) both personally and for the rest of the residents.
Harm reduction programs are another option, or lifestyle, for those who choose not to work a 12-step or spiritual program. The harm reduction model upholds that abstinence is the ideal goal for those using illegal drugs. Working with drug users from a harm reduction perspective involves accepting that some people simply are not going to give them up at this time, but nevertheless offering them services to assist them in reducing the harm associated with drug and alcohol abuse. An open door policy can result in a harm reduction snowball effect: small changes can pave the path for further reduction of drug use and an improved lifestyle in other ways. This snowball effect can continue, eventually to the point of abstinence. I believe that everyone must find a program that works for them, and harm reduction certainly is a newer option worth exploring.
Of the many programs available, I choose to work a 12-step program to help me stay clean and sober. Relapse is an everyday reality and I must deal with it one day at a time. When temptation crosses my path, I recall the turmoil I felt while in my addiction and remind myself that I never want to experience the life of drugs and alcohol again. Instead of following temptation, I try to learn from every negative event that enters my life and turn it into something positive.
After living with HIV for approximately 11 years, I was diagnosed with HCV. Soon afterward, I began experiencing feelings that were all too familiar to me from the early days of recovery and HIV: isolation, sadness and fear, plus obsessive tendencies and depression. I never realized how important life was to me, and how much I wanted to live until my life was threatened -- threatened with addiction, co-infection, and all the symptoms that accompany it, including depression.
I had always been known as a positive person with an optimistic outlook on life, and I viewed depression as a weakness. But I was willing to do what was recommended, though I did not like the sound of a psychiatric evaluation. My depression had to be stabilized, however, especially before I could start HCV treatment.
The first step in the healing process was to go deep into my soul and apply the steps that I had learned from my recovery process... back to the basics! It is amazing the changes that will occur in your life when you simply shift from a negative attitude to a positive one. Today I do not view depression as a weakness, but more as an element of life that needs the human touch. Along with strengthening my 12-step program, I am also working with a therapist. My positive outlook has returned, and I look at every event in my life as a learning experience, something that I can share with others.
I have followed the scientific advances made in both HIV and HCV treatment in the last 10 years. I began HIV treatment in the early days of AZT in San Francisco, and was very fortunate that I did not develop resistance. I am now benefiting from a HAART (highly active antiretroviral therapy) regimen. Research advances are being made daily, so I live each day the best that I can, one day at a time, so that I can be alive and healthy and able to take advantage of what the future may bring. The future is unknown, but living the best I can one day at a time has brought me much solace and hope.
To treat or not to treat -- that has been my dilemma until recently. As with HIV treatment, beginning HCV treatment is an individual decision that should be made with your physician's assistance and as much information about your options and the chances of treatment success as possible. It is important to begin therapy while your immune system is still intact, and your liver is showing minimal signs of liver deterioration. After many hours of research and meditation, I decided to begin treatment in January of 2002. Now that the decision has been made, I am preparing myself in mind, body, and spirit so that I can be 100 percent present to make this experience a success.
Living with co-infection presents many challenges. What keeps me going is the future and what it may bring. In the early days of the HIV epidemic the only hope many of us had was through visualization and meditation. Today we have real hope for long-lasting treatments and eventual cures. Scientists move ahead the same way as the rest of us: one day at a time.
Update: I began treatment for HCV with pegylated interferon and ribavirin (once a week pegylated interferon injection and twice a day single capsule of ribavirin). I did experience the normal course of side effects, flu-like symptoms, and the treatment interacted with my HIV medication. Therefore, I had to temporarily halt all medications for two weeks. I then restarted the interferon, and slowly reintroduced the other meds. I will discuss my treatment experiences in my next article for Positively Aware. Everyone's experience with and response to treatment is unique, by no means do I discourage anyone from beginning treatment. I look at this as a learning experience.
Read Part I of Gerald Moreno's story, "HCV/HIV Co-Infection I: A Patient's Perspective."
Read Part III of Gerald Moreno's story, "HCV/HIV Co-Infection III: A Patient's Perspective."
Gerald Moreno is a health educator/trials screening coordinator with the University of California San Diego's Antiviral Research Center (AVRC). This research facility conducts clinical research for people living with HIV and HCV. For more information, please contact Mr. Moreno at (619) 543-8080 ext. 237.