Lucky to be alive – my story of surviving Tuberculosis

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March 24, 2014 by juicefong

Dr. Wiechowski was a white-haired, quiet, deliberate man. I handed him the note from the x-ray examiner and he slowly rolled his chair back away from me, reaching for a mask which he would wear for the rest of our conversation. “You have Tuberculosis,” he told me.

It had been a few months that I had been going to Dr. Weichowski complaining of a myriad of symptoms—high fever, excruciating headaches and eventually night sweats, the giveaway clue of TB. I was finishing my second year of teaching in 2005, but my school year was cut short as I would be quarantined and then not allowed to return.

The face of a TB survivor - yours truly

The face of a TB survivor – yours truly

It’s humiliating, really. You have to tell them whom you’ve had the most contact with—friends, my girlfriend, family. They ask those people to come in and get tested. They sent clinicians to my school, and all of my students got tested for TB, too.

Meanwhile, I was holed up in a specially-designed private hospital room with two sets of doors and a special reverse-ventilation system. Anyone who walked in had to put on a special duckbill mask first. I was fortunate to be visited by many friends, but after eight days of this, I felt like I was serving a prison sentence.

Doctors would show up at any hour of the day or night and want to talk to me. “Tell me about your symptoms. Where have you traveled recently?” Unless someone close to you has Tuberculosis, it’s actually hard to know for sure. You can get it from a co-worker, a friend, even on the subway. It’s an airborne disease, and it is lethal. The doctors told me that chest x-rays showed that my lungs were like Swiss cheese. By the end of the episode, I had lost 35 pounds, down from 165.

More than likely, I came in contact with someone with TB while in rural Mexico the summer before on a teacher professional development trip with the U.S. Department of Agriculture. An amazing program, but also one that took us through parts of the hinterlands where Tuberculosis is highly prevalent.

I looked up the statistics. For my demographic—race, education level, immigrant status—the odds were 1 in 100,000 that I would develop an active case of TB. But of course, bacteria do not discriminate. I was a victim of Tuberculosis, but I survived.

I look back and it’s a little scary to think what I went through. But when I read up on Tuberculosis (start with Mountains Beyond Mountains), I quickly realized that I was one of the lucky ones. I’m still here nine years later, alive and healthy, with no residual effects of the disease, without any required treatment.

My case developed while living in New York City, which has a tremendously strong public health system. The local health department took care of me every step of the way, free of charge, covering the $35,000 hospital bill, for starters. They even sent a nurse out to my school three days a week just so she could watch me take my 24 pills of toxically strong medicine at each sitting during my break. (This method called “directly observed therapy” ensures that patients complete their full regimen, to avoid creating drug-resistant strains of TB.)

But I was one of the lucky ones. In 2012, 1.3 million people died of TB out of the 8.6 million who were infected. In a rich country with a strong public health system, there’s a strong chance you will survive. But in many poor countries, victims of Tuberculosis are often ostracized, isolated, and sometimes left to die. In Russian prisons, TB patients are outcast to separate cell blocks without adequate care. In Mexico, stories abound of full families being infected and shunned from the rest of their community.

Tuberculosis is a treatable disease, but it requires intensive drug therapy for about 6-12 months and a lot of discipline. In my case, the NYC Department of Health and Mental Hygiene bent over backwards to make sure I took my huge dosage at each scheduled interval—it is in the public’s best interest for them to be so aggressive. But in many developing countries, achieving the same level of treatment is quite difficult.

As I reflect on my TB story today, World Tuberculosis Day, I want you to take away three things:

1) Tuberculosis still affects many people around the world including people just like me: young, healthy, educated and stunningly handsome.

2) With affordable access to the best drugs and a strong directly observed therapy program (DOTS), the vast majority of cases can be cured.

3) Those infected by TB should not be stigmatized. With the right treatment, they can return to being fully-functional adults or children, without any risk of contagion.

Thanks for reading my story. Find out more at the World Health Organization or the Gates Foundation.

 

 

One thought on “Lucky to be alive – my story of surviving Tuberculosis

  1. jigna says:

    Thank you for sharing your story ! There is a real need for TB survivors to share their story to inspire others and reduce the stigma that surrounds this disease. Like you I am also a TB survivor and have been an activist for the past 7 years, Please read my story here:
    http://globaltb.njms.rutgers.edu/downloads/products/culturalcompetencynewsletters/UMDNJ-CulturalCompSpring12-1.pdf
    Or just google Jigna Rao to read about other advocacy articles and my personal experience.

    Would you be willing to join the efforts of STOP TB USA ? We have a Facebook page for those affected by TB: http://bit.ly/stoptbusapatientscommuntyform. Please visit that page and share your thoughts.

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