In March 2016 while I was in the DRC I developed one of the worst coughs I ever remember having. I would start to cough and finish twenty minutes later. I couldn't sleep, I couldn't work, it was so bad that one of my research participants took my hand and prayed for me. Now my German doctor friend had a somewhat different take on the situation. After listening to my lungs he thought that my cough might just go away after two weeks.
Although my cough got better it never really left. When I would start to cough usually at night or while running, my chest would tighten and I would feel like I was choking. I thought I'd just wait it out and see if it got better when I got home.
Fast forward about a month. I'm staying at home with my mom in Mississauga and I come home from a run wheezing so badly that I'm shaking and have to actively work on breathing for about thirty minutes before I get back to normal. I'm finally convinced it's time to go to the doctor. A little concerned that it might be tuberculosis but pretty sure it's not.
The doctor is also a little concerned it might be TB. He sends me for a chest x-ray and orders some other tests. The x-ray is clear but the other test showed that I had an antibiotic resistant infection. We identify an antibiotic that will work. I move back to Ottawa about a week later.
The cough and wheeze slowly dwindle over the course of three weeks until I'm feeling pretty alright, but then it suddenly starts again. After two long bike rides and a children's Birthday party I'm coughing so hard that I throw up. Time to head back to my Ottawa doctor's office. The doctor at the walk in clinic listens to the history and is pretty sure we should check for TB again and orders two skin tests and four sputum samples. After two weeks I return to the doctor because I'm still coughing and haven't heard about any of the results. All but one of the TB tests have come back negative and I'm given the same antibiotic that I was on before.
So I went back to work. At around 4 p.m. I got a phone call from the doctor's office. The voice on the other end of the phone says that the test shows that I have a micro-organism in my lungs, probably TB, and that I have to go home immediately and not talk to anyone or go to any public places. My nightmare gets worse when I get a phone call from a public health nurse telling me that this "In-Home Isolation" is going to continue for weeks during which I'm not supposed to have contact with anyone or go into any public places where I might expose someone who is immune compromised to TB.
They arrange for me to meet an infectious disease specialist at the Ottawa Hospital the next day. My aunt, a former TB nurse agrees to drive me and help with groceries. The doctor who meets us explains that because of my travel history and the duration of the cough we are going to treat my cough with TB medication while we wait for more test results and that I need to be isolated from other people. We do another chest x-ray and my aunt takes me home. Later someone else from Public Health comes and drops off hundreds of pills. The following day a public health nurse starts coming daily to watch me take 14 pills per day.
So for 12 days everyday consists of taking 14 pills per day, supervised, which destroy my stomach and zap my energy. I convince the public health nurse that I should be allowed to see other people and she reluctantly agrees to letting me see people in an open-air environment. In no circumstance am I to go inside a building with another living being. My aunt continued to help me until she developed a blood clot in her leg and had to have two rounds of emergency surgery in 24 hours (she's on the mend now). At this point I'm calling my mother begging her to come and help me with my laundry and to help me get to my next appointment at the hospital.
I have to say that being on in-home isolation was really hard for me as an outgoing, active, extrovert. I felt very restricted in my home and I didn't seem to be able to get enough social interactions even with daily outdoor visits and frequent phone calls. I also experienced a lot of anxiety of how my illness was going to impact my very demanding Ph.D. program. It was also hard to slow down from my normally very fast paced lifestyle.
By day 12 my cough is gone but I'm exhausted and my stomach hurts all the time from the medication. At the hospital after a nurse completes my intake a doctor comes in with no mask on and announces "good news! you don't have TB and you don't have to wear a mask or take medication any more!" I don't think I could ever imagine being so furious and elated at the same time. On top of everything there is no explanation for why my cough went away with the medication (the doctor's guess was that the medication relieved existing inflammation in my lungs) or why I was allowed to continue taking this very strong medication for up to five days after the test results came back. There was also no explanation of how they mistook some other micro-organism for TB, all the report said was that it was something "naturally occurring in nature".
The good news is my cough never came back, although I guess we'll never know what was causing it. The bad news is that the medication seems to have had a lasting impact on my digestive system. I've discovered that this can be mitigated by not consuming greasy foods or alcohol, however I'm going to be a bit disappointed if I can never enjoy a burger and fries again.
What did we learn from this? 1,600 new cases of TB are diagnosed in Canada each year and a smaller proportion than you'd think are among new immigrants and refugees. If you're diagnosed with active TB you can be placed on in-home isolation and not be allowed to do much of anything. If you violate this condition and you're found to be a public health threat you can be hospitalized. Public health is supposed to help you complete the tasks needed to live like laundry and groceries and because their funding is often on the chopping block so that's easier said then done. (Subtext pay your taxes)
Personally I'm really glad that I didn't have TB. Another friend who spends time in the Congo did have TB and it's a long recovery. So long in fact, that if I had, had active TB that I would still be on medication, I might not have been allowed to go home for Thanksgiving, to Washington for my upcoming conference etc. I am a little disappointed by the way the situation was handled by the hospital and public health, at times it seemed like I, as an individual, wasn't being considered very much at all. This, among other things has also led to significant doubts about whether I want to continue with this line of research. I'm not sure that the health and safety risks are worth the reward (which these days seems to be living below the poverty line and fighting a lot with my thesis supervisors!).
