My experience in HIV treatment
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December 8, 2022
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By Olga Irwin as told to Kara Mayer Robinson
I don’t remember exactly the date I found out I was HIV positive, but I remember the first time I talked to my doctor very well. He diagnosed me with AIDS and said I only had 3 months to live because my T cell count was under 10. That was in 1999.
When I finally found an infectious disease specialist at a new clinic near me, I was told that with medication I could live a long, fulfilling life. I’m 54 now.
I started treatment in 2000. I have since had several different treatments but now I have an undetectable viral load.
My normal weight used to be around 190 or 200 pounds, but when I was diagnosed I weighed around 160 pounds. About 6 months into treatment I gained 40 pounds and was back to my normal weight. I stayed at that weight until I started another medication regimen.
After starting this therapy my weight increased greatly to 230 pounds where I am now. When I switched to my current regimen, I no longer gained weight, but I didn’t lose weight either.
Most of the extra weight is in my abdominal area. I have to wear my shirts two sizes bigger than my bottoms. I have to mix and match a lot when buying clothes. When I get clothes, I have them altered or have someone make them for me. It’s hard to find clothes that fit me and it costs more and more to make clothes look right.
I’ve talked a lot with my doctor about my weight gain. He always tells me to change my eating habits and exercise more. I have other health issues that make extra weight even more dangerous.
My doctor recommended that I see a counselor to help control my diabetes and change my eating and exercise habits. But it wasn’t easy for me to make changes.
diet, exercise and lifestyle
A few years ago I went on a very strict no carb diet and lost 50 pounds. But my belly was sticking out even more and I looked like I was pregnant. I was told that if I could lose another 10 pounds I would be a candidate for liposuction. But I just couldn’t lose those 10 pounds. After that I stopped the diet and gained all my weight back.
I don’t think fad diets work well. When you start with one, once you don’t eat according to plan, it seems like all the weight comes back – and even more.
But over the last year I’ve gotten better with exercise and small changes in my diet.
I have osteoarthritis in my lower back. With all the extra weight, my back hurts more and makes it harder to exercise. But although I have some mobility issues, I’m an active person.
Last year I did water therapy to help with my arthritis. When it was over I started swimming. Now I go to the YMCA twice a week and do my water therapy exercises and swim a few laps. When I started, I barely did five laps. I’m up to 20 now.
Even though it seems like I just can’t lose the weight I’ve gained, I feel like swimming and exercising in the pool are good for me. This is the first time since putting on the weight that I’ve actually done any type of exercise. I haven’t lost any weight but have noticed that my legs and arms are more toned. A few people have asked me if I’ve lost weight because it looks like I’ve lost weight, but the scale says I haven’t.
Emotional ups and downs
My weight gain was emotionally difficult. It affects my self-esteem. I have a lot of negative thoughts about how I look. When I see pictures of myself and how far my stomach is sticking out, I don’t feel good.
But I’m optimistic about the new studies looking at weight gain with HIV drugs. It also makes me feel better knowing that the weight gain isn’t entirely my fault. My meds are making it harder for me to lose it.
My advice to anyone who has gained weight from HIV treatment is to talk to your doctors, friends, and other support systems. Don’t try to do everything yourself. Seek help from others and learn about the latest medical advances.
Hopefully, these new studies of weight gain from HIV treatment will lead to the development of new drugs that don’t cause weight gain and help us either maintain our weight or lose it more easily.
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