Patient Perspective: Presenting Late to Care and Committing to Treatment

When I realized that I still had shingles despite taking medication, I asked a friend to take me to the emergency room (ER). It took all of my strength just to walk into the ER, and I was fading fast. I felt that I was about to fall to the floor. When the nurse asked me how she could help, I told her that I couldn’t breathe. She listened to my lungs and told me that both of my lungs were full of fluid. Because the equipment needed to treat me was not available there, I was flown to their sister hospital. That is how I knew that I was really sick. My friend called my family to let them know that I was in serious condition and that I was dying. While in the ER, I coded twice and was immediately put into a medical coma for just over 4 weeks.

Receiving My Diagnosis
When I finally got out of the coma, I learned of my HIV diagnosis. As my diagnosis started to sink in, I started to cry. I wondered what my doctor was talking about, as I had been married for 10 years. My husband passed away from cancer in 2009, and I helped him during this time. My diagnosis came in 2012. I thought about conversations I’d had with my husband, and I remembered him telling me that a woman he was involved with had died of AIDS. I cried, I hurt, and I was disgusted. I felt that there was nothing that I could do about my diagnosis—nothing.

My Treatment and Rehabilitation
I was started on medications for HIV in the hospital, along with seizure medications and many other drugs. I had started to have brain seizures, which I’d never had before. Nothing was ever wrong with my brain. Most of my medications were crushed and put into puddings so I could take them. Because of this, I did not like chocolate, vanilla, lemon, or any kind of pudding for a long time. But if you have HIV, you definitely need to take your medicines!

After my hospital stay, I was sent to a rehabilitation facility to relearn how to speak and walk. AIDS took all of that out of me.

I’m still going through the emotional trauma of how could this happen, why did it have to happen to me, and why did it take so long to happen to me? The doctor eventually told me that I had likely been carrying HIV for the entire 10 years I was married. I cried and felt sorry for myself for the first 2 or 3 years—I didn’t want to leave the house—and I knew I couldn’t keep that up.

My Future
I kept thinking about what my purpose could be after coding twice in the ER. Why am I still here? What am I supposed to be doing? What am I missing? I’m a spiritual person, so I believe that there is something that I am missing that I need to be doing.

My diagnosis began with AIDS and a CD4+ cell count of 20 cells/mm³, and the medications that I received helped me and continue to keep me undetectable, so I cannot pass on HIV to anyone else. I have learned to trust myself—to love myself all over again. I love me now.

Your Thoughts?
In your clinic, what support is provided to late-presenting patients receiving an AIDS diagnosis? Join the discussion by posting a comment sharing your experiences, and then learn about other key decisions in HIV.