Nelson Vergel: Going Beyond Survival
A Leading Advocate's Thoughts on Getting the Most Out of Life
In 1986 Nelson Vergel was only 27 years old when he learned he had HIV. At the time, he wasn't sure he'd make it to 30, let alone to one day see 50. At the recent Retrovirus conference in Montreal in February, he invited a large group of friends to dinner to share his fiftieth birthday with him.
"Being 30 was a big milestone, 40 was a huge one, and now 50 ... I never even thought, three or four years ago, I was going to be 50," says Vergel. "It was a big miracle for me, which I was able to enjoy with my friends."
A native of Venezuela and former chemical engineer, Vergel is a 25-year survivor of HIV who has, by necessity, become a leading treatment advocate for people with HIV. Vergel has developed multi-drug resistance (MDR), rendering his HIV essentially resistant to every commercially available HIV drug, but you'd never know it by looking at him. Vergel is the picture of perfect health -- fit, toned, and tanned -- and even though on disability, probably works harder than most people with a full-time job. And while he claims he's dealing with it, he says it sometimes makes him feel like he's not going to live that much longer. "Yet," he laughs, "I've been around forever."
His number one issue right now? "Fatigue," says Vergel, without hesitation. "People think I'm a hyperactive person, I lecture around the country, and yet when they see me is when I'm at my best. I would say that 80% of the time I'm struggling to get to the point where I have enough energy. I have severe fatigue -- it's cyclic, it comes and goes -- but most of the time I have it, and I have to find ways to deal with it."
Vergel, an international speaker on HIV treatments and side effect management, and co-author of the book Built To Survive, says that the people who come to his lectures are aging and long-term survivors who, like himself, experience fatigue, as well as gastrointestinal (GI) problems. "We used to blame Norvir -- well, I haven't taken Norvir for three years, and I still have some diarrhea and bloating, so that's my number two," jokes Vergel.
"I'm 50 years old, I exercise, I look pretty good, and I try my best to keep my body in shape and not fall apart with lipodystrophy or wasting. But at the same time, I wonder if this is the way a healthy 50-year-old feels. And I'm almost sure that the answer is no."
Vergel says he is on a constant search for the answer to fatigue, through research, reading and consuming HIV information on a daily basis -- to the point where it's almost become a full-time job. Curiously enough, a recent e-mail from HIV advocate Jules Levin, founder of the National AIDS Treatment Advocacy Project (NATAP, see article on page 36), gave Vergel his first glimpse into why some people with HIV are experiencing so much fatigue.
"They conducted a study where they performed functional MRIs of the brain, and they found a section of the brain that, when compared to healthy HIV-negative subjects, produced less creatine, which is a metabolite for energy production. So already there's something going on in our brain that is causing us to have fatigue. Some people also blame, of course, side effects of medications we're taking. Fatigue is occurring not only in people like me who are dealing with MDR, but it's also occurring in people with undetectable viral load. So I'm always searching for 'What is it?' and 'How can we treat it?' "
To treat it, Vergel takes testosterone by injection every two weeks, which keeps his testosterone hormone levels within normal range. He also takes vitamin supplements, including B vitamins, for the reason that B-6 and B-12 deficiencies have been correlated to fatigue.
"Another drug that's becoming popular is Provigil [modafinil]," says Vergel, "It's actually been studied in people with HIV at Sloan-Kettering in New York, with great results." He cautions, though, that the drug is metabolized through the same P450 pathway in the liver which many HIV drugs use, and therefore more drug-drug interaction studies are needed. Vergel states, however, that many are now taking Provigil once or twice a day to battle fatigue and depression.
He said doctors have also been prescribing Adderall, which is a stimulant composed of mixed amphetamine salts, and is thought to work by increasing the amount of norepinephrine and dopamine in the brain. It's used to treat Attention Deficit Hyperactivity Disorder (ADHD) and narcolepsy (a chronic sleep disorder), but, on the downside, it may become habit-forming.
"There's green tea, and some people take ginseng -- I've tried that too," says Vergel. "So there are some of us in this constant search for what we call a pseudo-normal life, either through medications or other things to increase our energy level, because without energy, there's no life. When I'm tired, not only do I not produce, I don't write, I don't help others, I feel depressed, everything collapses. I cannot deal with stress, I don't want to pay my bills, I'm too tired for that, or to deal with phone calls. So energy and fatigue really, really affect everything in life, even adherence -- but we need more studies."
Another big issue, says Vergel, is undiagnosed sleep apnea, which he has a mild case of. He says that some of us wake up more tired, sometimes, than when we went to bed. But according to Vergel, most people are not referred to sleep labs, because many doctors feel that if you're HIV-positive, you're expected to feel fatigued. Some individuals may have sleep disorders that are either induced by weight or by things they aren't even aware of, including side effects from drugs such as Sustiva or Atripla, which may be causing a disruption in their sleep patterns.
It's often a struggle, says Vergel, to have a really good quality of life. "I tell people that survival doesn't mean anything unless you have a good quality of life. I mean, if you're going to stick around in this world, and yet you're tired all the time and you're depressed, your body's falling apart, and you're actually not keeping yourself in good health, then what's the point, really, of surviving? I tell people that we have to go beyond survival."
And it just so happens that going beyond survival is the subject of Vergel's next book, which he says is two-thirds complete and due out later this year. It's a compilation of 25 years of what he calls "collective health wisdom," which is a tremendous amount of information he has learned while moderating his list serve (pozhealth at Yahoo! Groups) as well as from e-mails he's received from people with HIV all over the world.
"People ask me, 'How do you know so much?' " says Vergel. "I'm reading e-mails from other people who've tried different things. There's this collective wisdom that we have as long-term survivors. I think we also know a lot in HIV as we age, more than any other disease, we've learned so much and, yes, we keep it to ourselves and it's time to share that. For instance, what we have learned about hormones, we've been using them for 20 years, before anyone else did; what we have learned about exercise; what we have learned about nutrition, supplements, things that help with energy, depression, and sexual function -- that's something nobody wants to talk about."
Vergel says he sees the younger generation of HIV-positives only worrying about taking their pill and moving on with life and while he thinks that's good, he tells them to go beyond that. "Thinking about HIV all day isn't very good for you anyway," says Vergel. "I tell them we have to go beyond getting our T-cells up, getting our viral load down to undetectable -- there are other issues that come up. We're now having concerns about bone density. We seem to be losing bone more than healthy people -- are we going to have fractures in a few years? And most of us are taking Truvada or Viread -- is it really going to end up affecting our kidneys? Our liver -- some of us, like myself, have hepatitis B or C -- is cirrhosis going to affect us at the end? I wonder about liver, kidney problems, bone density -- and there are bigger issues that I think are coming up in most studies, such as cancer, including anal cancer. They say a little education is needed for doctors and patients about how to diagnose problems that lead to anal cancer; how to catch it early; Pap smears -- what does that mean? Should we all be getting that?
"People say, 'You're so obsessed with health.' Well, I'm obsessed with life! I want to live a good life! I love my life. I think having a good quality of life so that I can travel and lecture is very important, so I have to be aware of all these things. Are we going to have a shitty older life? I don't know, I don't think so. Maybe some of us are, some of us may not -- some of us may reach a very healthy 80-year-old age. I think some people forget that, people with HIV, yes, we may have more health issues, but we also go to the doctor 10 times more frequently than any other person out there. We go to the doctor every three months -- they check our lipids, they check our blood sugar, our kidneys, our liver, chemistry, all that. Very few people in this country go to the doctor every three months. Most Americans don't go to the doctor for years, until something happens to them. So yes, we may have some issues, but we keep an eye on them more than anyone else, so that's a good thing. It makes us a little bit more, I won't say obsessed, but focused, on numbers than anyone else. Are we sicker than most people? Maybe, maybe not. But we're definitely being monitored more frequently than any other people in the United States."
Vergel says it breaks his heart that a lot of the younger folks who come to his lectures are completely clueless. "There is this vast amount of information we have as a community, and yet we weren't able to really package it so that we could say, 'Here -- read this, and hopefully you'll learn what a lot of us old folks have dealt with. Without scaring them, of course -- I don't want to scare the new, naive patients because, as I said, they're going to have it easier than we did. They have drugs that are a lot more friendly and don't cause lipodystrophy or lipoatrophy, and they don't have to take high doses of Norvir anymore. But yet, I think they're going to have issues -- they may not be as severe as ours, but there will be things that probably bother them, like CNS problems with Sustiva, some bone density issues, some kidney toxicity eventually, or even cancers that may flare up later in life."
The stigma associated with being HIV-positive is a continuing problem, admits Vergel, which contributes to feelings of loneliness and depression, especially in older adults. While he doesn't see it going away any time soon, he does believe there's reason to hope.
"Women with HIV who are heterosexual, they're stigmatized horribly," he says. Vergel goes on the Hetero Poz Cruise Retreat each year (See News Briefs on page 16), where he speaks to more than 60 heterosexual individuals, and is able to spend the entire week with them on a cruise. "We think we have it bad in the gay community, but we don't have it as bad as the heterosexual community with HIV, where they're terrified of how people treat them in the straight world, too. So it's not only the gays, it's the straight people with HIV, especially the women, who have a lot of issues around stigma."
In order to be able to start to change people's perceptions, Vergel believes we need to begin with the younger generation. "I think I'm seeing a trend for them to be more open-minded, more accepting of what's different. Stigma really is a fear of what's different. Most people stigmatize because they don't understand certain things, so they're afraid of them and they discriminate against them." Vergel thinks HIV is always going to have some stigma associated with it since many of us acquire it through sexual transmission, and because many are stigmatized for being gay.
"But I have seen an openness in that generation -- they have straight/gay alliances in most schools, and kids are able to come out earlier than we did. Most of us were in the closet until we were 20-something, so I really think the world's going to be a better place in 10 or 15 years, when a lot of the older generation that has grown up with a lot of stigma, misconceptions, racism, homophobia, and HIV-phobia are going to be moving a ways back. We have to generate a lot of programs at the college level, the high school level, where we can teach these kids, hey, it's okay, these people are not evil, HIV doesn't discriminate, it's just a virus. I think we're going to get there, I really think so.
"I may not be alive to see the day," says Vergel, "But I think the next generation that comes through is going to be more accepting of people who are different, who are not what we call the 'norm.' "
Vergel says he's very out about his own HIV status and being gay, and that even being an immigrant from South America with a Spanish accent hasn't caused him to suffer as much stigma as most. "Is it because I am very out about it and I feel actually proud of all the differences I have? Or maybe it's the fact that I live in a more isolated, bubble kind of world, that doesn't expose me to people who are really anti-HIV, anti-gay, anti-female, anti-immigrant, and all the other 'anti' things we have in the world," laughs Vergel.
One final thing that Vergel stresses is that it's really important that all of us, even those who are HIV-negative, deal with the acceptance of aging. "You know, when we look at ourselves in the mirror, we're not looking like we did 20 years ago. Some of us may still be single and looking for dates, or sex, and some of us may be getting rejected because we are older. For some of us who have been positive for a long time and getting older, we're not really preparing ourselves. I think we're in pseudo-denial of the fact that we're ever going to get a day older because we were not going to be around for that long, or so we thought."
While Vergel says that we're never going to be that person we were a few years ago, especially with concerns around lipoatrophy and facial wasting, we have to find ways to love ourselves. "Think of the things we've gone through and yet, we're here, most of us are not falling apart, having productive lives. We're survivors of a horrible thing that happened, and is still happening, and often we have friends and lovers die around us, and we have to take care of ourselves."
Vergel was recently involved in an anti-stigma campaign in Houston, and says that early next year they will be holding what he believes to be the area's first conference focusing specifically on HIV and aging, and bringing in experts to talk about the physical and mental aspects of aging with HIV. "It's hard," explains Vergel. "I don't want to preach about it, because I deal with it too, but somebody needs to look at that. I'd like to see a study, a cohort, observing people who are aging with HIV and what our main issues are.
"I think it's time."
Be sure to also check out an interview with Nelson Vergel and Dr. Donald Kotler on body shape changes and HIV.
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