Will I?

 

         Will I?

 

Will I lose my dignity?

Will someone care?

Will I wake tomorrow from this nightmare?
   -RENT 1996

 

I'm at the gym, and listening to RENT. Which isn't ideal gym music, but I was lacking inspiration as I walked into the gym. I've listened to RENT countless times, I know the lyrics, and yet often when listening to it, what ever message I need to hear at that moment seems to ring louder during that time when I listen. It is a profound musical. And when "Will I?" started, I had to stop doing chest presses, and listen.

 

Will I lose my dignity.

Will someone care.

Will I wake tomorrow from this nightmare.

 

Written in 1996, reflecting the emotions of a group of people who were embattled in the fight against HIV/AIDS, poverty, and social ills, it is about the lives of  Bohemians in New York city. 1996. Now 13 years ago. I remember I went through a phase where I read a lot of AIDS literature. And what was striking about the stories then-was the stigma, and the lack of compassion, and the lack dignity during the decline to death. The decline to death.

 

I'm walking down the back corridor of the waiting room today, and I see a familiar face. I see EM. I am slightly confused as to why she is back in the clinic. I saw her yesterday. In fact, I saw her in the evening. She was the last patient of the day, and came into my room at 5:30 pm. To start antiretroviral treatment. When I grabbed her chart, I had a slight sinking feeling. It was late. I was tired. It had been a hectic day, the now usual story of seeing lots of patients, some well, some sick. But to start somebody on treatment that late in the day was slightly irksome. So I called them from the waiting room, and this smallish woman was pushed in a wheelchair by another woman and we headed to the end of the hallway to my exam room. I glance through her notes, she was diagnosed a few months when she was found to have TB in her lungs. Typically, she has something like 60 CD4 cells probably working overtime to try and keep her from succumbing to pathetic opportunistic infections. We talk about the treatment, and I go into my now familiar spiel about how she'll need to, in all likelihood, be on these medications for the rest of her life. It's a way to help me see if a person understands how important it will be to take these medications.

 

"I just want to live."

 

I don't suspect she's at death's door, she may not even be on the right block, but she has this determination in her that strikes me. Did I mention she is 62. Short. And spry. And she just wants to live. She is 62, but looks years past that. She's passed the first hurdle of this visit, which is to indicate that she understands the importance of the medications, and will be ready to start taking the pills. I flip through her past labs on the computer. There is some mild anemia, which is so mild I barely consider it anemia for this population. Everything else looks good. She tells me she is feeling well, except that she has noticed she gets full really easily when eating. If she were a routine clinic patient, I'd likely do the bare minimum examination-look in her mouth for thrush, listen to her lungs if she had a cough, check for sign of anemia. But since she's about to start treatment, I have a sense of responsibility to at least do a bit more on a baseline examination. I help her get onto the examination table, and when she lies flat, I notice her protuberant abdomen-which was masked as she sat in the wheelchair (which she got at the entrance to the hospital because she was too tired to walk the block to clinic). When I get to examining her abdomen, it's rather distended, is full of fluid, and has some dilated veins. Her legs are also swollen. There's a problem. She almost looks like she should have cirrhosis, but nothing to suggest it by her history, and what labs I do have. Does she have TB hiding in her abdomen? Could it be ovarian cancer? 

 

EM is in clinic with her sister. It's approaching 6pm. Nothing will get done at that hour. No labs. No pharmacy. No xray. Nothing. They have taken a mini-bus taxi to get here, and now I'll have to send them home, only to return tomorrow to get new blood tests done, go to the pharmacy, as well as book an abdominal ultrasound, which won't be done for two, or three, possibly even four weeks. They have been waiting since the morning to be seen. They will have to slowly make their way out of the Bara complex, over the bridge to the mini-bus taxi rank, take a taxi home, and return tomorrow to complete these tasks. Don't forget the costs of the taxis.

 

So I see her in the waiting room today.

"EM-are you ok?" I'm worried that somehow she feels worse today.

"Oh doctor, I am good."

"Why are you in the clinic?"

"I just wanted to see if there was anything else I needed to do."

 

I ask about the labs, pharmacy, and ultrasound. Check, check, check. Done.

"Nope, you've done all the things you needed to do."

 

I review, again, how she'll start her medications tomorrow. I remind her to start taking her bactrim prophylaxis today-almost out of anxiety on my part hoping that ward off any infection before her immune system recovers.

 

And she reminds me, "I just want to live."

 

I see a very pleasant 30 year old woman today who has been on treatment for 215 weeks. A long time. She is on the starting regimen. There are only 2 regimens. I glance briefly at her last few notes. They have been uncomplicated visits. She is a pro. She does well with her treatment. It'll be a routine visit. I go through the standard questions. I ask how she is feeling, if there are any new problems. I consider not even asking if she has missed any pills, I mean, she's been taking these pills for longer than I have been a doctor, and her CD4 and viral load are where they should be. But I ask.

 

"Doctor, I don't always take my efavirenz at night."

 

And admittedly, this catches me a bit off guard. People who have compliance/adherence issues, or who have defaulted treatment in the past carries these labels with them on their charts, and I glance again at her last note to review compliance. This woman is bright, and articulate, and has volunteered this openly and honestly. It turns out, this isn't new, and in fact she has been skipping efavirenz doses at night for more than a year now. I wonder why it is, that this is the moment she has chosen to disclose, not that I ask, because I want to encourage her to feel she can disclose these things in the clinic. It turns out she can no longer tolerate the nightmares she has from taking the efavirenz. This is a known side effect of the medication. She has reached a point where she knows that not taking it regularly is going to have consequences for developing resistance. I ask a little to clarify, if these are dreams, or nightmares. It's purely out of my own curiosity. Some antimalarials give dreams, as I experienced in Zimbabwe, and I loved the 6 months of vivid, colorful dreams I had when I was on treatment for TB. But had they been nightmares, I likely wouldn't have been as keen to keep taking the pills for 6 months. And she's been taking them for years. Perhaps she has been worried about how we, the clinic, would react to this disclosure, and that is why she has kept this to herself. Her options are tough... But we come up with possible plans to deal with this issue, and she'll come back to us with her choice...

 

Clinic finishes at a decent time today-and I have 3 consults to do, and I also want to check up on the other patients I'm seeing on the wards. I decided to pop in and see the guy with infective endocarditis, who is doing great and should be heading out of the hospital soon. As I walk down the ward, I look at the patients lying in bed. I look at the faces. Confused men, lying naked in bed. A man trying to get a cup to his lips, struggling, and spilling water over him. I head to see my patient. After 3 plus weeks, he's bored, we chat for a bit. I write a brief note in his chart. When I look up, I recognize the guy in the bed next to him. It's the guy I admitted this morning.

 

"Doctor" is the patient's first name. Not an all too uncommon name. He showed up at 8am this morning, I handed him his admission papers, and sent him to get an xray and then head over to the admission ward. I checked a few hours later to see if there were any labs on the computer, as a surrogate measure of if he had maybe been seen yet. No results. I hoped that he wouldn't sit for hours waiting to bed admitted. And here he was. He smiled, and we talked a bit. I looked over the admissions orders that the registrar had written. Doctor had a biopsy of an abdominal mass weeks ago, was told he had non-Hodgkin's lymphoma, and needed to follow up with the hematologists. When I saw him yesterday, I wasn't even sure if he knew he had cancer. I imagined the conversation when he got his results went something like this.

 

"Well, your biopsy results show you have non-Hodgkin's lymphoma, we'll send you to the hematologists good luck and take care."

 

Yesterday, after weeks, he hadn't been to the hematologists, and the work up that should have been started wasn't anywhere close to being done, or even started. Doctor is about my age. But looks at least 10 years older, though I have more grey hair. The striking thing is how wasted his face is. You can literally imagine what his skull bones look like, because he basically has a thin shell of skin covering them. He was in the office yesterday, with his girlfriend, and their infant (maybe 6 or 7 months old). You can see the fear in this guy's eyes. He has no immune system. He has cancer. He knows this. Yet, like EM, you can see he desperately wants to live.

 

Will I lose my dignity?

Will someone care?

Will I wake tomorrow from this nightmare?

 

As I'm lost in a moment of vanity at the gym, I hear these lyrics, and these are the faces and stories that immediately came to mind. Dignity. Care. Nightmare (both literal and figurative). How is it that lyrics written about this damn disease 13 years ago in America still perfectly capture what is going on today in other parts of the world.

 

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