By Erika Nelson

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About Fortunata Kasege
Age: 35
Home: Houston, Texas
Diagnosed: 1997

Fortunata was diagnosed with HIV in 1997 while she was pregnant with her daughter. At the time, she had just emigrated from Tanzania to the United States. Now 35, Fortunata lives in Houston, Texas, with her daughter, who is HIV negative, loves gymnastics and horseback riding, and is now 12 years old. Fortunata works as an admissions representative at Interactive Learning Systems, connecting members of the African immigrant community in Houston with English-language and job skills training. She volunteers for the Campaign to End AIDS, and often speaks publicly about HIV.

Updated August 2009

What was the first thing you did when you were diagnosed?

I was terrified. I don't remember being that scared in my life. It was a horrifying moment for me. I fell, cried hysterically. It took a long time for me to recover from that news.

Where were you when you found out?

I was at the nurse's office. They called me just a few weeks after they took my blood work and other tests for the prenatal visit. They called me before my appointment date and told me that I needed to go in to the office. Still, that was the last thing I was expecting to hear. They told me, and of course, one of the first questions I asked the nurse was, "Is my child going to be okay? What will happen to my baby?"

I was worried a lot about her well-being, and they told me that, here in this country, we have treatment available. You will start right away, you're not going to die -- I kept saying that I was going to die, I was going to die, because that's what I know happens when you get diagnosed in my country. They just die so quickly. I didn't even think I would stay alive to see my daughter growing, so I was crying for that reason, too. They said, "We're going to put you on the medicine to protect the baby from getting it. The baby's going to be born healthy, hopefully, and you will be okay, too, because we'll run more tests for you. You'll be fine!" I had to see that happening for me to believe that.

How did you cope? How did you get from being overwrought with anxiety to becoming an activist and being at peace?

It wasn't an easy road. If it wasn't for the great group of professionals who were providing counseling for me, I don't know what I'd do! ... I did promise my doctor that I will do everything that I'm supposed to to make sure I'm okay, and to make sure the baby's okay. I didn't miss a dosage of medicine that they gave me for the baby. I went to the counseling, I was receiving every service that I could to make sure that I'm surviving. I had days when I would just stay home and cry all day, but then after talking to different people, I remember going to my first support group.

There I found people who had lived with this disease for 10, 20 years. A group of women. I was amazed how healthy they looked, how beautiful they looked, how positive-spirited they were. I think it's the combination of those professionals and the people that I saw that lived with this disease for a long time that slowly had an effect on how positive I became.

I really felt like everyone was just trying to make me feel better. Later you meet the actual people, and you think, "Oh, yeah, they do live longer, and this is it. Maybe I can make it like this person made it." I met some women whose children graduated from high school, and they were [diagnosed] while they were pregnant with [those children], same situation like my daughter. So that encourages you more than any other material can do.

I ask questions. I'm a very curious patient. The doctors or people who have worked with me know this. I always ask questions, because then I reduce my level of anxiety. When I get answers, when I know, when I educate myself, I worry less. It didn't happen overnight. But I think that that's why, right now, I am working on helping other people. As far as the hope and being encouraged, it happened faster when I met somebody, an actual person who went through what I'm going through. When I met the person and looked at them, the level of encouragement happened faster than if somebody or my doctor's just telling me, "You'll be okay."

Do you remember who the first person was that you told, after you were diagnosed?

It was a friend of me and the father of my daughter, who had escorted us to the doctor's office. I remember panicking and after I got myself off the floor, I ran outside where the father of my child was sitting with his friend. I just screamed, "I have AIDS, I have AIDS, oh my god, I'm going to die, I'm scared!" I think I kind of went [laughs] a little over the top, compared to some people I've met where they're a bit more quiet. That explains how the devastation is in Africa, as far as death. I just saw death when I heard that. That's how I reacted.

After that, I was disclosing this news to my family one at a time. I had to recover first, before I had the nerve to tell somebody. Not easy. Some people, it took years for me to tell them, because you always worry how the person is going to react. Is your relationship to the person going to be the same, or are they going to be scared of you? Are they going to treat you differently? But my family had always stayed positive with me, and very encouraging.

What was the reaction of your friend and your partner when you told them?

They were shocked, of course. The friend of ours' eyes were big, and [he said], "Oh my gosh, this is a tragedy; oh my gosh, this is not happening!" And my ex (now) was crying all over the place. We hugged each other and cried.

We had so many questions about me and the baby. We just wanted to know what's going to happen next. We went home thinking, maybe it's our last days. Even though they told us we were going to be okay, we still thought we were so close to dying. I'm living proof now that there's life after diagnosis. There's life, you just have to do the right things, hang out with the right people who are positive to you, stay away from people who would make you feel down. I have done that over the years.

There are some people who are not very nice, who are very judgmental, especially with the stigma going on. So I took myself away from that group of people, and stuck around people who would support me emotionally and physically, so that I can be okay.

Do you remember what your first CD4 and viral load were?

For the first six years, they said, other than the bad news of HIV, your counts are pretty good! Your immune system is at the level of a normal, healthy person. My CD4 count was 1,500, and my viral load had been undetectable for six years. I was in pretty good shape.

The good news is my early diagnosis. That's what they told me. It's early enough that you'll stay in care, you keep being tested every four months, and we're going to monitor you and make sure that when you're in the level where you need to start treatment, we'll know. I did just that, I never stopped being in care.

What are your CD4 count and viral load now?

Now it's dropped to the upper 300s, which is still okay, but it's not the best CD4 count, either. My doctor and I are thinking of considering some treatment options, but I'm still getting monitored. My viral load hasn't duplicated too much. [Since this interview, Fortunata began HIV treatment and her viral load is now undetectable.]

That's another thing that I want to tell people: Don't let what happens in your life have an effect on your immune system. Even though there's so much evidence of different things that can suppress the immune system, including the disease itself, what happened to me for the past few years is evidence that what happens around you can have an effect on your immune system.

I can see exactly in which time frame my CD4 count started dropping because of stress and sadness and all these other issues. I lost my father, I lost my ex, and being away from my family back in Africa -- stress that even people who aren't positive have. As a life stress, it would take a toll on anybody. I'm still working on that to make sure it doesn't put me down.

Have you been ever sick?

No, not HIV-related. I eat right, I don't drink, I don't smoke, I don't do drugs. I try my best. If I ever get sick, I don't want to look over my shoulder and say, "I did this, I did that." I want to do everything, I want to be there for my baby, I want to see her graduate from school. I want to be around, and hopefully live long enough that maybe I will go back home one day. I've got to stay alive for that.

What would you say was the most challenging thing about being pregnant and being positive?

For me, because I wasn't very aware of the disease, there was so much information I had to learn. It was a learning process. Also, I had to deal with not knowing if my child was going to be born positive or negative. Even though there was a good chance of her being born without the disease, still there was a small chance of her being born positive. With that chance not being eliminated, it bothered me a lot. I know exactly how it feels to be HIV positive and pregnant, and to worry to death about your unborn child. It tortured me a lot. I had thoughts of, "Am I really going to be okay? Am I going to be well enough to take care of her when she's born?"

To make sure you stick with your medicine regimen. I'd already promised myself not to get my child sick, so I stayed on the medicine 100 percent. I was waking up in the night to take the pills. I had to take the medicine. That was kind of challenging, too. The fact that this child probably saved my life, because I was so depressed to the point of thinking of suicide. That was the thought that I had at that time. I said, "Well, then I'm not going to do anything to myself, because I have this baby." That was a good reason for me to take care of myself, that I'm carrying somebody else. I really think that people who don't have babies, who aren't pregnant, and they just get this news, they should really try to talk to people -- the right people -- and get some help. It can get terrifying.

Are you in a partnership now? Do you have a boyfriend or a husband?

No. Right now, my ex decided to leave me, when he found out he wasn't positive. I had to move on. He found somebody else, he started a family. For a long time, I thought that that's it, it's the end. I just have to deal with my disease, I don't think I'll have any relationships at all. But then years pass, and I say, life goes on. Maybe I need to give myself a chance again. So I did.

There is some possibility, there's somebody I like, so there's nothing official yet. I'm open to whatever God provides for me as far as relationships. I want to be open minded about that. If I like the person and the person likes me, he'll ask me the right questions, and then I will find myself in a relationship again. Let's cross our fingers.

When the time does come to start another relationship, how will you address safe sex?

That's always the bottom line. My life is not the same anymore. Before I was diagnosed, I didn't put so much importance on using protection, for whatever reason that I had at that time. But right now, I can't think of any kind of sex without protection. It just seems so bizarre for me to have any kind of relationship without protection. That will be my number one thing, whether the person is positive or negative: We all have to make sure we practice safe relationships.

Just because you have this disease, it doesn't mean that it's the end of the world. People do find partners in life, and they move on! I'm open to that. I'm open to starting a family in the future, I can see that happening. But I subject everything to God's will right now. I'm grateful for my daughter, and if she's the only family that I ever have, I'm positively grateful for that, too. But I keep my options open.

Speaking of family, do you have the support of your family? I know they live a long way away.

Yes, very much. It's really sad that I don't get to be with them while I'm dealing with this, but I have such wonderful friends. There's not that many of them, but I'm blessed with a nice, wonderful set of people who are like my family, and I never knew them before. When I got here, I just made friends with them.

My family stayed very supportive of me. They talk to me constantly on the phone, and they pray for me, and they're there for me. I'm blessed that way. My dad was the rock for me, was the best man that I have ever had in my life. He was the person who would tell me, "You're gonna be okay, you're gonna beat this." Unfortunately, he died before he got to hold me again and tell me that it's gonna be okay. But yes, they're very, very, very encouraging to me.

What's your best disclosure story?

The best one was the first time when I told my story in public. I remember it. After my father died, it seemed like the end of the world. But I decided to go out and share my story. I decided to talk about awareness and maybe somebody will be touched by this, so it isn't all tragedy.

I got this invitation to Kentucky. They had a fundraiser gala for World AIDS Day last year. That was my first time to go up there and tell my story in public. I remember after I finished, everybody stood up and they remained standing there for a few minutes. They were clapping constantly.

I remember looking, and wondering, what is so special about this thing? I was overwhelmed, they had a standing ovation for me -- that was probably the only one that I can remember that was an over-the-top reaction. I thought, Here I am, telling my business, right in front of the people. I don't know how they're going to react. The outcome was remarkable. They were coming after that to talk to me and thank me for sharing my story and encouraging me.

The pastor from the community said, "People here, they're very uptight, and very conservative thinking about this disease. They have their way of thinking about the people who have this disease. You put a new face on it, and thank you, and we want you to come back and speak to our church."

How do you think HIV has changed you?

Oh, big time. I had long, long, long plans before. [Now,] I think it's such a privilege to be alive. I woke up today, I'm alive, that's all that matters.

The diagnosis and being a mother for the first time came at the same time. I don't know if it helped me to be a better mother to my child, because sometimes I look at her, and I say, "These are my healthiest years. If I'm not going to be this healthy for a long time, I should do the best I can right now with her." It helped to not take things for granted so much.

What was it like when you disclosed to your partner, and he then tested?

By the time we got home, he already knew what I was going through. He thought it was him, initially.

He thought he gave you HIV?

He thought he did, because he knows that, besides him, there was one more relationship that I had. That other relationship had happened when we were not together. After he did the test and the test supposedly came negative, then the whole thing changed. I had years of being emotionally abused by him, just by using that disease status. Being not from here, we kept it inside for awhile. That was probably the worst thing -- that's when the most damage happened.

After years, he decided he wanted to be with somebody else. He left, and he disclosed my HIV status to other members from my community. When he disclosed my status online, he didn't have to say [anything] more. People already look at you as a dirty person. That's all people have to know.

That's another challenge that I had to go through, as far as relationships are concerned: the idea that I have this, and therefore I'm not worthy anymore. The disease hits you both ways.

After he left, how did you get from the point of feeling bad about yourself to feeling good, and realizing it was him that screwed up?

I didn't realize the damage he had done until after he left. That's when you start recovering, that's when you realize how terrible you were feeling before. Dealing with HIV itself is hard, and with stuff like that on top of it, it damages your self-esteem. It's just terrible.

If someone's in that position now, I would encourage them that it's going to get better, because I can stand in front of people now and tell my story, coming from not wanting anybody to know my business, period. It's going to be okay. When you hit the bottom, the only way to go is up.

For me, that was it. I either had to be miserable for the rest of my life, or get up and get better, and do something positive. The more you surround yourself with positive people, the better you feel. If I stuck in that environment and that set of people that was negative, I think I would still be feeling the same way. You find a network of people that support you, or just be on your own and you somehow find your own strength and get better.

FORTUNATA'S MEDICAL UPDATES

CD4+ Count (July 2009): 375         Viral Load (July 2009): Undetectable

Current regimen (April 2009): Viread (tenofovir) + Isentress (raltegravir) + Intelence (etravirine) -- Fortunata just started taking her first-ever HIV med regimen on March 5, 2009. It was a difficult decision for her, 12 years in the making -- she had many worries about the effects of meds on her body and on her life, but she became much more comfortable with the decision once she saw that the meds were doing their job: In only two weeks on meds, her viral load dropped from 12,000 copies/mL down to 111 copies/mL and in July she discovered her viral load was undetectable.

Fortunata Kasege can be reached via e-mail at fkasege@yahoo.com.

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