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HIV/AIDS Resource Center for African Americans
Kai Chandler Lois Crenshaw Gary Paul Wright Fortunata Kasege Keith Green Lois Bates Greg Braxton Vanessa Austin Bernard Jackson

Fortunata Kasege

March 25, 2008

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Fortunata Kasege 

About Fortunata Kasege

Table of Contents

HIV Diagnosis

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!"

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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.

HIV, Health Care and Treatment

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 ever been 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.

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