Marianne Swanson: The Survivor

Marianne Swanson, a senior staff nurse at Grady Health System’s Ponce Center, was born and raised in Brooklyn, in a close-knit Italian-American family and community. She lost her first husband and two of her three children to AIDS, and she is HIV positive. This is her story:

Starting a family: Jeff and I were in a singing group in a Catholic Church, that was where we met. We fell in love and got married in a small Christian church in Brooklyn. We were married for about two years before I got pregnant with our first son, Jonathan. My second son was born in 1985. I remember we had gone to New York to visit when he was 5 or 6 months old, and a friend of mine had contacted me and told me that he was sick with HIV. It was the first time that HIV hit close to me. I didn’t know at the time, hearing about his illness, that it would even come closer.

HIV positive: Our second son, Joshua Paul, was sick a lot. He was over a year old and started getting swollen lymph nodes and a runny nose. Doctors thought he had a mysterious form of cancer. I guess it was in 1987 that Jeff suggested we get him tested for HIV. Jeff had a previous lifestyle that could be cause for an HIV check-up. Sad to say, Joshua Paul’s disease just got worse and worse until he passed away. After he died, Joshua Paul’s oncologist told us his HIV test had come back positive. I was like, OK, well, during his cancer treatment, he had some blood transfusions. She said they were screening the blood transfusions at that point, so there’s no way he could have gotten it from a transfusion, the only way he could have gotten it was from me.

Marianne & Darrell SwansonFrom me? I was like, excuse me? I had always been the wife of one person, faithful to my husband, I’m not a gay man, never had a blood transfusion. What happened? How could this have come to our family? We were advised by our obstetrician and different doctors that all of us get tested for HIV. It was a very long, drawn-out process back then. Jeff tested positive for HIV, I tested positive for HIV. Jonathan, my oldest son, was HIV-negative. I was pregnant at the time with our third child, and the fate of our unborn child was unknown at the time. There was a 50-50 chance she would be positive. That was a grief-filled period.

Holding out: In 1987, my daughter Annalisa was born. She was sick from six weeks of age and was diagnosed with full-blown AIDS. So that was really a hard pill to swallow. After Annalisa passed away, Jeff’s health started to fail. We were just sort of holding out, we knew that there were a lot of things scientists were working on to try to develop a therapy for HIV. It was a little bit too late for Jeff. When combination therapy came out, he was already in hospice care. They did try to put him on an experimental therapy, but he couldn’t eat, couldn’t swallow, never really worked for him. Jeff passed away in 1996.

Remarkable recovery: I feared that I was going to be next. I had just watched everyone wither away and die. I had only 73 T cells. But I was not about to let my last child become an orphan. At the end of 1995, I went on combination therapy—Combivir, AZT and 3TC with crixivan—and showed a remarkable recovery. My HIV became undetectable and my T cell count was above 200. Now it is in the 600 range. I’ve been undetectable ever since. For me, the therapy that came out at that time was literally a lifesaver.

Figuring out a future: I was diagnosed in 1987 but I knew I had it in 1985 because that’s when my son was born. So now here it is, a decade later, and they’re saying, here are these drugs, you’ve got to live, now figure out your life. What does living look like now? Part of living for me was always being involved in a church. I started teaching Sunday school in a church singles group. Everybody in my church, everybody in the singles group, knew about my HIV so I’m like, OK, I’m not here for a man, I’m just here for friends. I told myself I’d be a single parent forever.

Met a guy: There was this guy that I became friends with in the singles group and he kept looking at me with these eyes that didn’t look like friendship eyes. I was like, wait a minute, no, back off, we’re just friends. Anyway, Darrell Swanson entered my life and started pursuing me in a romantic way, which felt so unusual to me because I hadn’t done that for years. He didn’t mind my HIV status. Lo and behold, in June 2000 we got married and have been married ever since.

Back to work: When my son went to Georgia Tech, I went back to work. I always said I wanted to work at Grady, at the Infectious Disease Clinic. I was a patient there and they saved my life. I’ve chosen to do battle as a nurse in HIV care. Now, young people are getting diagnosed without a knowledge or the experiences of the HIV crisis. Some have a hard time maintaining their medicine regimen. They need organizational skills, help with paperwork. And there are still people who are getting diagnosed too late and dying.

Status update: I went from a very complex regimen to a very simple one. I developed some resistance, so I take an additional pill, but it’s still pretty simple. This is all just routine for me. I don’t feel like HIV controls me, I feel like I control it. I’m a warrior.

Go here to watch the stories of those involved and those who benefited from the discovery of 3TC & FTC. Go here to read the full series of blog interviews with inventors, patients, and others.