Highs and Lows

Some of the patients in the HIV Unit are characters. There is one guy who I don't think is part of the study but I constantly see him hanging out in the Unidad. He has a hobby of selling pirated DVDs and his favorite phrase, the only one he appears to know in English, is "OH my GAD." He calls himself "Freddy Cougar", a fact he reminds me of every single time he sees me: "It's me, Freddy Cougar!" Even though I've had a number of conversations with him, he still seems to think I don't understand very much Spanish, and also evidently thinks I have a really bad memory.

There is another guy, this one in the study, who Emily just refers to as "your friend", because I led him through the informed consent and also the questionnaire for the first visit. "My friend" is quite the confrontational one though. The informed consent, which usually takes about 10 or 15 minutes, took at least a half hour with him. He has pretty bad arthritis, and the whole time he kept complaining to me that he didn't really want to start taking antiretrovirals, that arthritis is MUCH worse than HIV. He seemed to take personal offense when I told him I didn't know anything about arthritis. I tried to explain to him that I wasn't a doctor or a nurse and that really the only qualifications for my job are speaking Spanish and knowing the basics about HIV, but that didn't appear to be an acceptable answer. For a minute there I felt like I was going to break down and cry, but then I remembered that he was the one being ridiculous, that counseling patients about their arthritis has never been and never will be part of my job description.

He's another one that I see all the time in the Unidad, mostly in the mornings. As many times as I told him that he would have to come for his visit with us in the afternoon (since the doctor that does the Medical History part of the survey doesn't arrive until 2), every single time he reacted with surprise and acted as if it was a big injustice committed towards him, making him come in slightly later in the day. When he finally did come in for his visit with the study, my friend and I had another hour of stimulating conversation. Among other topics, he asked me where else I had been in the Dominican Republic, and I said Jarabacoa. He responded, "Oh, I KNEW you were going to say that. ALL the gringas go to Jarabacoa." Again I felt personally attacked, and couldn't help responding, "ACTUALLY, I'm going to be living there for 9 months." "Oh, you'll like it, all the gringas like it," he insisted.

Part of the reason the interview took so long was that he claimed to not understand one question I asked him the first time I said it, so I had to repeat everything two or three times. The other reason was that he started telling me things about his personal history that had nothing to do with the questions I was asking. I am usually happy when a patient gets talking, but this was a little different. He admitted that in the past he had consumed drugs including cocaine, and had been quite "promiscuo". It's pretty easy to figure out what that word means even if you don't know Spanish, but my friend was not convinced I understood, and made me give him the definition just to make sure. "I admit, I also enjoyed participating in orgías," he continued. Again, another word you don't need a translator for, but another one that I was required to explain to him just to confirm that we were on the same page. Ayayay. You've got to love honesty though.

On Friday I had the opportunity to attend a support group for patients in the study who have been found to have resistance to certain drugs. It was heart-wrenching and heart-warming at the same time. There were five patients who attended the meeting, and I was afraid that they wouldn't want to talk. The room we were in wasn't exactly the most comfortable or homey, plus it had terrible acoustics and no locks on the doors. When Dr. Lina began talking at the beginning of the meeting, explaining why everyone had been invited here today, I expected an awkward silence to follow. But to my surprise, everyone was more than willing to tell their story to the group. I don't know if this has more to do with the nature of Dominicans, or simply because they were glad to have a venue to let it all out. On top of that though, they all seemed whole-heartedly appreciative of the work of the people in the HIV Unit as well as Emily and my work with Estudio SeR. These patients, in particular, have reason to be thankful for the study: the resistance test that we do as part of it is something they wouldn't normally get in standard HIV care; it's a really expensive test and the blood has to be sent to the United States to be analyzed. Normally, if a patient is on medication but their white blood cell count is dropping nevertheless, the doctors will take that as a sign that the patient is resistant to one or more of the drugs he or she is on, and change them. But the resistance test saves the patient a lot of time and illness, and in some cases can prevent the patient's developing resistance to additional drugs they are taking (the antiretroviral regimen involves three different drugs at a time, so it is possible for someone to be resistant to one or two but not all).

Anyway, it was nice to hear the stories of all of the patients, most of which had relatively happy endings because the patients are feeling better and happy with their new drug scheme. But a special case was the one patient present at the meeting who we found to have primary resistance (meaning that he contracted an already resistant form of HIV, rather than developing it after missing a few doses of his meds). Every time I see this guy in the Unidad I want to just go up and hug him because he looks so morose and kept to himself. And also, because I've heard his back story: he's in one of the high risk groups for primary resistance, men who have sex with men. And when he first came to the Unidad he had told absolutely no one about his diagnosis. He was completely miserable. But the doctor presented him with an ultimatum: he had to tell at least one person about his diagnosis before he could start antiretroviral treatment (the reason being, the treatment is a lot more likely to fail for a patient with no one to remind them to take their pills every day). Reluctantly, he told his sister, and apparently he's been much, much happier ever since then. But of course, on top of it all, he just found out from us recently that he has primary resistance.

Anyway, I was getting nervous for him when it was getting close to his turn to speak at the meeting, because he has the same nervous habit as me of shaking his legs like a fiend. He also had his hands in between his knees and was shaking them too. But when his turn arrived, to my surprise words just began to poor out of him, and you could see that saying these things out loud was a huge relief. I was on the verge of tears again when he started talking about having been suicidal, and how he is so thankful to the Unidad and Estudio SeR for basically saving his life.

After all the patients had taken their turns, Lina again stressed the importance of adhering to the drug regimen they are on now, especially for patients with resistance whose options are running out. But it seemed she hardly needed to say that, because all the patients were clearly ready to be in it for the long haul, to do whatever they could to keep themselves alive. Then Lina asked me if I wanted to say a few words, so put on the spot I just said that we in Estudio SeR are glad to have been of some help, that we hope everyone will keep taking all their meds so that they stay healthy, but that we are hear to help whenever they need it. Immediately everyone chimed in with an emphatic "Thank you", which I hadn't even been expecting.

At the end of the meeting, everyone hugged each other, and it was just one of those indescribable moments. To realize that these people I hardly know, only a couple of which I've ever had a conversation with, were so grateful to me was pretty strange and reminded me of why I'm here to begin with.