I saw a patient today in clinic at the Zoo. He was diagnosed with HIV in December. Actually, he meets criteria for AIDS, because his immune system is so shot. He also had a terrible brain infection with Toxoplasma gondii. He came in, at that time, very confused and unable to care for himself. His wife brought him in. She, fortunately, says she tested negative...at least so far.
I see him today, 2 months after being discharged from the hospital. He left with 3 medications to treat his meningitis. He told me that he stopped taking his medications a week or so ago, because he felt that they were causing burning when he urinated. I think my jaw hit the floor. He has an active parasitic infection in his brain, and he stopped his medications on his own because of some pain when he pees. He claims the burning has stopped now that he's off the medications. I'm not challenging that he got the symptoms - people get weird side effects from medications. I'm questioning his judgement and understanding of his illness in stopping his medications without consulting a doctor.
I looked at my translator and asked about 3 different ways if he was really not taking his medications. His wife agreed that he had stopped taking his meds. She didn't seem to think this was unusual at all. Their 3 year old boy was playing with the paper on the examination table, and all I could think was, "This kid isn't going to know his father." The man has a limited lifespan even in the best case scenario, and not taking his medications does not exactly put him in the "best case" category.
I presented him to Dr. D, the attending, who is very hands-on when it comes to couples with HIV. She wanted to come talk to them herself.
She asked if the wife had been tested - she claimed yes, and it was negative. The wife then claimed that the nurse hadn't set her up for a repeat test. Repeat testing is standard procedure - in discordant couples the negative partner should be tested every 6 months. So, we began to question if she really got tested in the first place. Dr. D asked them when was the last time they had sex. The wife looks at the husband, who says "Ayer." I think he's speaking English, and I ask, "A year?" The translator looks at me and says, "Last night" (literally, "Yesterday"). Dr. D looks at them and say, "Last night?!!?!" She then went on a rampage about how he has a sky high viral load, is amazingly infectious, and does she want her child to be an orphan. She said, "I don't want you having any relations until he is on HIV medications." They agreed, but I am not convinced they are going to follow this advice.
We explained backwards and forwards how HIV works, how serious his brain infection was, etc. They kept saying they understood, but they didn't look scared enough to have understood. Even the translator was worried for the wife.
They are supposed to come back next week, hopefully after him returning to taking his meds, hopefully with her getting an HIV test again, and hopefully with them in the right mind to take care of themselves. We don't need another child watching his parents die of AIDS.