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HIV and Anemia: One Patient's Story

Posted Aug 24 2008 1:49pm
VAREN BLACK: Hello, I'm Varen Black. Welcome to our webcast. Living with HIV is a lifelong challenge, and Rae Lewis-Thornton knows this challenge all too well. At 23 she was diagnosed with HIV, and then, eight years later, with full-blown AIDS. Since then she's been speaking to the public about her personal experience living with this disease. Today she's here to share her story with us. Thank you, Rae, for joining us today. How did you first find out that you were HIV-positive?

RAE LEWIS-THORNTON: About 17 years ago I donated blood. In fact, I organized the blood drive. People were afraid to donate blood because they thought that if somehow they donated blood they could get HIV. Of course, that's stupid, because we know that when you donate blood, they give you brand-new needles. The HIV antibody test was brand new. They had just started to test blood, and about three months later, what I thought was a thank-you letter was a letter telling me that something was wrong with the blood that I had donated. I went to the Red Cross the next day. The entire meeting took five minutes. I was 23 years old. It was a cruel time to be told that you were HIV-infected.

VAREN BLACK: Rae, what was your next step? Did you start on treatment right away?

RAE LEWIS-THORNTON: Well, you know, there was no treatment when I was diagnosed with HIV, so no. I was actually referred to the National Institute of Health, where I started to participate in a study there where they followed me every six months. It was an epidemiological study, and it wasn't until about three years into my diagnosis that actually AZT was available, and I started to take AZT, which was the national recommendation at that time, and I laugh when I think about it, because they had us taking about 600 mg of AZT, which was a toxic overload, and we know now that 300 can do what 600 does. So it was about three years before I started taking medication.

VAREN BLACK: Describe some of the challenges that you've had over the years taking medications for HIV.

RAE LEWIS-THORNTON: When I first started AZT, I remember the doctors saying, "You'll be nauseous for four to six weeks." In fact, I was nauseous for three years. AZT also made me fatigued, so I was tired all the time. No matter how much rest I'd get, there was never enough rest. I went from AZT to ddI. ddI was interesting, because it also created a queasy feeling in my stomach, but it also created diarrhea. But ddI had an emotional hurdle to it. I had these two big pills that looked like Alka-Seltzer that you had to grind up every day, and so it was an emotional, painful reminder of how ugly AIDS/HIV was.

It really wasn't until I went from ddI to Zerit and 3TC that I started to have a period where there really were no side effects, where I felt okay and I felt healthy. They didn't make me tired. They didn't make me nauseous. They didn't make me upset. But that was only short-lived, because I went from that to ritonavir. Now, ritonavir, which is one of the protease inhibitors -- they're one of the new, powerful drugs that are out on the market today -- although they do incredible things for you, they do make you very sick. It was probably by far my worst experience with HIV medicines. And I suffered through ritonavir for about four months -- and then finally we moved me to a medicine. We replaced that protease inhibitor with another protease inhibitor that had no side effects. That was Crixivan. The vomiting stopped. The diarrhea stopped. I thought it was going to be okay. Then two years into taking Crixivan I started to see that my body was starting to shape differently. They called it lipodystrophy, and it's an abnormal redistribution of the fat in the body.

VAREN BLACK: The medication that you're taking right now, does it consist of a large number of pills?

RAE LEWIS-THORNTON: Actually, I'm on the lowest number of pills that I've been on since I've been treated for HIV. I'm actually on about eight pills a day.

VAREN BLACK: Rae, what is the largest number of pills that you've had to take?

RAE LEWIS-THORNTON: 30.

VAREN BLACK: What tips from your experiences would you like to offer to our audience about taking HIV medications?

RAE LEWIS-THORNTON: First the person has to make a decision, a determination. The determination has to be -- it may sound very cold and cruel -- how long you want to live or how soon you want to die. What we do know, that if a person takes HIV medicines, they can and will prolong their lives. If you determine you want to live, then you have to set out for the right regimen. The right regimen could take some months, and it can take some downs, some valleys. That means that you take a medicine and the medicine makes you sick. What you do is, you don't stop the medicine. What do is, you go to a new medicine until you find one that works, and you keep that cycle going until you really find a medicine that works for you with the minimum amount of side effects. Basically, you want to go from one med to the next med to the next med until you find one that works. That also means that you have to have a doctor that's willing to work with you as you pursue a course of treatment that works best for you.

VAREN BLACK: Rae, listening to your story lets us know it hasn't been easy for you, but things are looking up for you. Do you have any final comments that you'd like to share, either about medications or about coping with HIV and AIDS in general?

RAE LEWIS-THORNTON: You know, medicines are half the ball game. People ask me often how do I do this, how do I survive? It's not just about treatment. Treatment is half of the ball game. But with that treatment you have to have a good doctor who understands HIV, who understands how HIV works, who understands who's up to date on HIV medicines, because every doctor isn't. And then, once you've gotten the physical health together, the good doctor, the good regimen of medicines that do prolong your life and will prolong your life, then you have to start looking at your mental health, because what we do know is depression is very prevalent in people with HIV. So you want to get into your mental health. And then I would venture to say that you have to do a spiritual piece, too, that you have to have some spiritual piece connected. And then you want a support system, and I think all of those together, whether it's a biological support system or a nontraditional support system. But the combination of a good doctor with good treatment, a good therapist, a support system and a spiritual piece could and will help you cope and deal with this disease for a long period of time.

VAREN BLACK: Thank you, Rae, for sharing your story with us today. We really do appreciate it. Thank you for joining our webcast. I'm Varen Black.

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