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• Ask the HIV Specialist Correction
• Thanks to “Dr. Z”
• Long-Term Survivor
• Missing Chicago
• Comments to Nelson Vergel

Ask the HIV Specialist Correction

Last issue’s HIV Specialist’s credentials were mistakenly listed. The correct listing is Sharon Valenti, MSN, ACNP-BC, AAHIVS, AACRN, HIV/AIDS Nurse Practitioner, and her affiliation is with St. John Hospital and Medical Center in Detroit, Michigan. We apologize for the error!

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Thanks to “Dr. Z”

Hi! My name is Patricia and I’ve been HIV-positive since May of 1996. Forgive me if this letter is a little crude, as I’m real nervous. I’ve never really reached out in this manner before.

I was infected through IV drug use. As bad as this is, I made a conscious decision and I guess I must have thought I could “beat the odds.” Well, I didn’t. In all honesty, I’d been living in total disregard for my life, afraid if I slowed down long enough, that I would have to face my demons and I wasn’t going to do that, I was just too scared.

One can only run for so long and it was my time to stop. I ended up in prison, with a whole new attitude and outlook on life. I was so glad when I got arrested. I know how that sounds, but it meant I could finally stop using and killing myself. And when I was arrested, I was sent to Cook County [Jail, Chicago], where I met the smartest and greatest doctor in the world, Dr. [Chad] Zawitz! I truly thank God every day for him.

I had been shooting heroin for years and I had a habit of sucking on the cotton that I used to draw up the heroin—long story short, I had been dealing with abscesses all over my body for three years straight. I’d seen doctor after doctor, had six surgeries and have scars, including one from my shoulder to my elbow because the muscle deteriorated so badly from the abscesses. There wasn’t a doctor who could figure out why until I met “Dr. Z”—he was genius enough to ask if I sucked on the cottons and he saved my life.

Now, here I am with a CD4 count of 114 and a viral load that’s undetectable. I’m on Truvada and Kaletra and the only side effect I’ve had is diarrhea. I realize that I am a walking miracle. I’m still in prison, but I’m in the drug program here and I remain open and teachable. I’m in therapy for all my other issues and I’m working hard so I’ll never have to come back here or pick up another drug.

I’ve been doing so well, in fact, that I’ve been asked to be an HIV peer educator and I’m starting a support group. I’m totally saddened by the way women here are so afraid to come to a support group that’s 100% confidential. I’m in a prison with 500 women, most of whom have one or more risky behaviors and, so far, only two of us want to be open and honest about it. I understand—I’ve turned down the chance to speak at a couple of health seminars because it would mean “coming out of the closet,” and if the women here aren’t willing to be honest with themselves because of what might happen, what will they do to me?

So I need some help as to how to handle “coming out” and I also want to be informed and armed with the best and latest information possible. Also, I’m to be released in about three months and I’m scared to death. After all the hard work I’ve done, I’d hate to lose it because I didn’t have a proper plan in place. I would be happy and grateful for advice from anyone. Please help. Thank you so much.

Patricia Douglass R37503
PO Box 3035 B-wing
Decatur, IL 62524-3035

Enid Vázquez responds: Chad Zawitz was in New Orleans during Hurricane Katrina in the Fall of 2005 and is one of the doctors who rushed to the aid of survivors. At the time, he was slated to provide the doctor’s comments to our 2006 HIV Drug Guide, and he kept his deadline a few weeks later despite the time taken for the emergency care. His presentations here at Test Positive Aware Network are always on the mark and well-received. We meet a lot of the best and brightest HIV specialists and we agree, Dr. Z. is one of them. We passed your letter on to him, and he was moved by your words. Good luck to you.

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Long-Term Survivor

I want to let you know how much I appreciated your article “The Graying Epidemic” [Editor’s Note, May/June issue]. Just when I start feeling like the only one concerned about what my future holds, and how much longer I have to live, I find an article that gives me some hope.

I have been HIV-positive for 21 years. I am 42. Without exaggeration, my closest friends from college who were gay are dead. I didn’t plan on living past 35. I worked so hard to be as successful as possible so that when I did die, my family wouldn’t be burdened with the cost of my medical issues or my death.

I reached 35 and was not ready for the future. After a 13-year relationship ended and I started with a new company, I couldn’t imagine what was next. I was now alone, except for my most faithful dog, and I was scared. What if I get sick, what if I get hurt? I felt like I was living in an old—I am talking 60ish—body.

I got hurt last year and after two other surgeries, I had to have my left hip replaced, after a long fight with the insurance company. After almost a year to date, AVN [avascular necrosis] has taken control of my right hip. I should get it replaced within a month.

I can’t help but wonder if this is only the beginning of the end. I am now on disability and have to fight with the long-term disability company almost quarterly to prove that I am not able to work. I try to be positive about my situation, but I have never felt so worthless. That’s something I am working on.

I am volunteering with YouthPride in Atlanta. I enjoy working with young people. I perform HIV testing and risk management, along with fundraising. I find that rewarding.

I could go on, but I think you understand where I am coming from. Who knew there would be a group of “long-term” survivors at all? I tell myself that I am one of the lucky ones.
Thanks again for your article!

Manuel Robles
Via the Internet

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Missing Chicago

Mr. Jeff Berry,

When I read your articles you help me stay connected to Chicago and, of course, the latest of news to keep my health in order. You help me to think of all of our wild times at the Bistro and up and down Halsted St. Those were the good old days. We didn’t have a care in the world. I have been living in Florida for the last five years, working in St. Pete but living in Naples. I only go home on my days off. It’s always on my mind to move back home, but until I do, thanks for making me feel like a part of Chicago.

Marty
Naples, Florida

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Comments to Nelson Vergel

Dear Nelson,
I just read your interview by Positively Aware on The Body’s website and I have to say that you are an inspiration to me as a person living with AIDS.

I was diagnosed at the age of 30 with zero T-cells and subsequently became very ill, finally losing my hearing, my eyesight, and my ability to walk from CMV myolitis. I was considered terminal and set to be sent off to hospice, but my parents took me home and nursed me back to health. I have regained my hearing and learned how to walk again, but I am still completely blind. I am now healthier in many ways than I ever was before, going to the gym every day, eating right, being pro-active about my health, and always looking for alternative solutions to my residual problems.

I saw you speak to long-term survivors about six years ago in Ft. Lauderdale. I was there with my guide dog and a blind friend and his dog too. I was so proud and honored to meet you then and you were a great role model for me and my recovery. I am still inspired by you and wanted to let you know that I understand what you feel every day. Yes, it is hard, but please be comforted in knowing that you have changed lives and brought so much to so many. I hope that will sustain your mind and your body as well.

I now speak to many different groups about blindness and guide dogs and I am advocating for blind rights and accessibility in my community of Miami Beach, Florida. In many ways, this illness has been a gift, enabling me to educate and help many others. I hope you feel the same way. Thank you for being you.

R. David New
Miami Beach, Florida

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Hi, Nelson,
Imagine my surprise when I opened my mail at Shanti and saw your picture on the cover of Positively Aware!

I absolutely loved the article You’re Getting Older and Better.

I love the title of your new book and am so looking forward to reading it when it hits the shelves.

You look fabulous! Thank you for your message, which profoundly affects so many people.

Sarah Kasman
Executive Director
Shanti

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Dear Mr. Vergel,
I recently read your profile in the latest issue of Positively Aware and was impressed by the way you were able to frame the issue of aging with HIV. Our current work at ACRIA largely focuses on the psychosocial challenges of HIV and aging. If you haven’t seen it, please go to our website (www.acria.org) and you will find a copy of the report “Research on Older Adults with HIV,” which is currently in press in an expanded form and should be available later this year. We also have a couple of booklets that address this issue from our HIV Health Literacy Program that are available at no cost.

In addition to stigma, the two major issues we see facing adults aging with HIV are mental health (very high rates of depression) and the importance of social supports to meet the challenges of this condition now and in the future. In our New York City research, we are finding very high rates of health comorbidities, at approximately three times the rates found among older adults in general. We are currently working on interventions to address depression and social isolation.

I noticed in the article that you are planning a conference to address this issue in the Houston area next year. If we could be of any assistance, please let us know.

Mark Brennan, Ph.D.
Senior Research Scientist
Center on HIV and Aging
AIDS Community Research Initiative of America (ACRIA)
New York, New York

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