Given the present pandemic and the collective need to physicallyAs opposed to "socially". You can still be social, just via your telecommunications of choice. distance, now seems like a very natural time to put in writing my difficult—and now distant—experience with another infectious disease, one that has been with the human species for much longer than COVID-19: tuberculosis.
As recounted earlier, I trekked around Africa in late 2017. One late March morning the following year, a few months after returning to Boston, I woke up with an excruciating headache. A few days later, I starting getting chills. The timeline of the onset of symptoms is hazy, but at some point I had amassed the following set:
- migraines and sensitivity to light/sound
- constant chills/shivering
- full-body fatigue
- loss of appetite
- substantial weight loss
- horrid, dry coughs
- night sweats
- high fevers
Multiple trips to the clinic only resulted in uninformative blood tests and ultimately incorrect guesses at what was ailing me, from a bad flu to mononucleosis. The clinic was aware of my Africa trip early on, but because of the multi-month gap between when I returned and when I started feeling ill, they didn't suspect a connection. At some point, my daily routine devolved into taking something to alleviate the symptoms as I went to work, and immediately collapsing on my bed once I returned home. The only times I got up were to eat (microwave or takeout, too tired to cook), shower, brush teeth, etc.
The turning point that sent me to the hospital was when I reported a fever of 104°F, making my case one of hyperpyrexia. To stress how high that is, 107°F is the point at which hyperpyrexia is likely lethal—at that temperature proteins in the brain undergo denaturation. Rephrased, the brain quite literally begins to melt. I walked into the ER immediately as commanded by the clinic, weeks after the appearance of the first symptoms, a delay that likely made my subsequent recovery longer than it needed to be.
The diagnosis of tuberculosis (TB) came only after multiple blood and sputum tests and biopsies of my liver, lungs, and spine. The spine biopsy was particularly scary for a few reasons. First, its motivation was to learn whether TB had infiltrated my nervous pathways. The period when that was an open question was a fraught one—in ignorance I could not help but entertain the worst-case scenario, a scenario that would have made an already uncertain time more serious. (Thankfully, tests of the extracted spinal fluid yielded negative results.) Second, unlike the liver and lung biopsies, I had to be awake during the procedure. To access the spine in the least intrusive way required entering through the lower back while laying on my stomach or sideways, positions where the patient shouldn't be unconscious. Lastly, I ran into problems with the biopsy. There were two attempts. The first was done in my hospital room with no radiological tool to guide the proboscis. That may sound radical, but it's one standard way to conduct the biopsy. Still, it was too painful and had to be aborted. The second attempt was done in a surgery room by a physician who specialized in the procedure. It was successful but the physical trauma from the first attempt had me on edge until the very end. While spine biopsies are common and safe, there are risks involved (as with anything in life). The idea that something may go wrong during a procedure that intimately enters my nervous system was—to be playful with my language here—literally nerve-racking.
The idea that something may go wrong during a procedure that intimately enters my nervous system was—to be playful with my language here—literally nerve-racking.
The liver biopsy was the principal factor that led to my diagnosis. While that procedure was straightforward (I was knocked out), it did leave me feeling incredible pain on my side for about a week as the liver recovered. Minor movements would be too taxing, compelling me to remain still. But the most unforgettable detail was that the wound made laughing a viscerally bittersweet occurrence. One of my roommates (a good friend) would tell me jokes—even the dumbest of humor was triggering—and we'd both laugh, first at the joke, then at the scene of me simultaneously having a good chuckle and wincing in pain as my reverberating lungs pounded my poor liver. The joy and pain would cascade into each other in a hilariously ironic feedback loop. In those moments, laughter was both the best and worst kind of medicine.
I was in the hospital for over a week as the team of doctors worked to figure out the problem. It's believed that I contracted TB during my time in Africa, though exactly where is hard to say. Those infected with TB aren't contagious unless they're actively displaying symptoms, known as active TB. If one is infected but displays no symptoms, the case is one of latent TB—roughly 2 billion people are in this situation. It's possible I had an encounter with someone during one of the many crowded train and bus rides I took with more rural commuters in Ethiopia and Tanzania, two countries where TB is prevalent enough. My latent case turned active months after I returned to Boston.
The path to full health was long. I was quarantined in my apartment for two weeks after discharge, as ordered by state-level public health officials. Their principal concern was that the situation was contained. Understandable, given I was symptomatic for weeks. My roommates and coworkers were contacted to inform them of their potential risk of illness and need to get tested. Thankfully, no one I was aware of got sick.
My caring roommates rearranged apartment space so that I'd have one room to myself. My hooyo flew in to also help because I was still too weak from the weight loss and soreness from the liver biopsy. It took a few days post-discharge before I could manage something as simple as walking to the dining table.
I would take a shifting assortment of antibiotics every day for 12 months. The medication was always nauseating, and in the beginning induced vomiting. Among the many rules surrounding the medicine, I was not to eat anything for 1-2 hours after taking it, condemning me to go about that period with a filling sickness that rendered me unmotivated to do much of anything else. I accepted my mundane medicated misery as it was necessary to get better, and I certainly was determined to be.
I was assigned two nurses who would, at least in the early months, be physically present as I took the medicine. This was necessary because some patients skip medication either because they feel better or it makes them feel nauseous. This would allow for the TB to regrow, this time more resistant to the antibiotics. This is obviously bad for the patient who now needs to take a stronger cocktail of drugs, but it's especially bad from a public health perspective, so nurses are present to confirm the medicine has been administeredThis form of treatment is called directly observed therapy, short-course (DOTS) and I was very fortunate that Boston has a particularly well-funded and effective DOTS program compared to other US cities.. Knowing that I was not their only patient, I was in awe at how they juggled their time and resources for me, even coming to my apartment to refill my medication (normally I would pick it up at the clinic) on days when I had fell ill again.
Even doing everything right, there were still complications from side effects involving my immune system that required two more hospitalizations, another lung biopsy, and more medicine.
I finished treatment in May 2019, making a full recovery thanks to the doctors, nurses, and staff who handled my case.
Again, I was saved by employer-provided health insurance. Ethically, this seems incredibly arbitrary, a cruel form of moral luck tied to productivity.
Given the timeline, it's worthwhile to point out how absolutely lucky I got with respect to the cost of my care. I started full-time work in January 2018. Less than three months later, I got sick. Like many US citizens, my health insurance comes from my employer. If my TB had activated in December 2017—when I was back in Boston but not yet working—I would have been in a pretty bad financial situation. The total cost of my TB treatment was around $50,000, almost all from services related to the initial hospital visit. My insurance covered nearly all of it, but I still had to pay upwards of $1,000 on follow-up scans and the like. Because my case had research significance, the year-long medication was free.
Again, I was saved by employer-provided health insurance. Ethically, this seems incredibly arbitrary, a cruel form of moral luck tied to productivity. My experience only hardened my position that we need a Medicare-for-all type healthcare program in the United States.
TB painfully (read literally) made me painfully (read figuratively) aware of my own mortality, to the point of inducing behavioral changes. I started running again. I shifted to a predominantly vegetarian dietMore accurately, health concerns made my dietary changes only easier. My principal reason for the transition—then and now—was my reckoning with the ethics of eating animals.. Regular meditation entered my routine because any holistic definition of wellbeing includes mental health. By all metrics, I'm healthier now than before the appearance of the first symptoms.
TB and COVID-19
TB has been with humans for millennia. It's fairly well understood, and there are proven treatments, yet remains globally endemic. Which is why COVID-19 makes me exceptionally anxious, for myself and others. Consider the comparative facts:
- We know less about COVID-19 compared to TB, though research is being expedited.
- There is no surefire treatment, and a vaccine is optimistically 12 to 18 months away.
- TB can be latent for long periods of time, while COVID-19 symptoms appear two days to two weeks after infection.
- Latent TB is not communicable, but asymptomatic carriers of SARS-CoV-2 can easily spread it.
Those last two facts together mean that, at least presently, if you get sick from COVID-19, many others are concurrently sick with you, straining healthcare resources in a manner that's universally bad for everyone, including other patients who are in the ER for non-COVID-19 ailments. It's scary to think if my initial hospital visit had occurred at a time like this, or if I was still going through treatment. The reality is many people are in this terrifying situation right now. And despite the misinformation, young people can still die from COVID-19, and those who don't aren't guaranteed a smooth recovery with no lingering pulmonary damages. We can all help make the situation less worse: staying home if possible, donating to specific funds, donating blood, and more.
As for me, while I'm technically not in a high-risk group, I'm not sure how my history with TB will come into play if I do get sick.
Definitely doesn't help, is my guess.