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Patient Stories: Tenzin Lobsang Kunor

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A college student from Wisconsin is diagnosed with tuberculosis and forced into isolation from his family and friends.

Tenzin Lobsang Kunor was in the last semester of college, had just been admitted to graduate school, and offered an assistantship connected to the program. Best of all, he recently started dating the love of his life. He felt happy, carefree, and enthusiastic about the future. 

On Thursday, April 25, 2013, however, the carefree feeling changed with an unexpected phone call. During a routine meeting with his supervisor at his college job, she received a phone call from her supervisor. The health center was trying to reach Tenzin to inform him that he was diagnosed with tuberculosis (TB). He had been tested for TB because he had severe chest pains and a sore throat for several months, but he did not expect the diagnosis. What happened immediately after the phone call was a blur to him, but Tenzin distinctly remembers the car ride with his supervisor to the hospital in La Crosse. She did everything possible to make Tenzin feel more comfortable and continuously encouraged him that it was all going to be okay. 

Tenzin spent a few days in the hospital in quarantine and ultimately was diagnosed with multi-drug resistant TB (MDR TB). During his time in the hospital, his partner and friends could not visit without wearing a mask. Many others sent words of encouragement, small acts of kindness that helped Tenzin to stay optimistic.

TB, or Mycobacterium tuberculosis, is an airborne infectious disease that is now the leading infectious disease killer in the world claiming 1.8 million lives each year. Multi-drug resistant TB (MDR TB) occurs when the bacterium is resistant to at least isoniazid and rifampin, the two most potent TB drugs.  Nearly 30 percent of global annual deaths from antibiotic-resistant bacteria are due to drug-resistant TB. 

After being in isolation in the hospital, he was sent home to Madison, Wisconsin, to live at home with his family where he finished the rest of his undergraduate courses, although he was not able to participate in any graduation ceremonies. While at home, he was still in isolation and had to live in his parents’ bedroom since it was connected to a bathroom. Anytime he left his room, he had to wear a mask. The first few months he had a peripherally inserted central catheter, or “PICC” line, in his arm through which he self-administered medicine. The rigorous treatment regimen of many drugs caused a host of side effects, from nausea, loss of appetite, fatigue, restlessness, and anxiety to loss of hearing, temporary impairment of vision, and peripheral neuropathy, a type of painful nerve damage, in his feet. 

On September 2, 2013, 139 days after his initial diagnosis and confinement for isolation, Tenzin was officially deemed non-communicable. That felt like such a glorious day to him, and he felt so free being able to leave his house without a mask. At the same time, he felt uncomfortable around others because he had grown accustomed to feeling that his existence was contaminating the air.

After isolation ended, and he was no longer able to infect others with TB, Tenzin continued his treatment for MDR TB. In January 2014, he also started graduate school which he found to be incredibly exhausting, especially with the side effects of TB medications. Despite these challenges, he was able to complete his graduate degree while simultaneously enduring TB treatment--one of the things he is most proud of. On August 7th, 2015, after 28 months of treatment and over 8,000 pills, Tenzin officially completed the treatment for MDR TB. 

To this day, Tenzin still feels stigmatized by his experience with MDR TB and does not always feel comfortable disclosing his experience. Nevertheless, he has since written several blogs – one featured in The Huffington Post, served as a Consumer Reviewer for the Department of Defense’s Congressionally Directed Medical Research Programs, presented at various trainings and conferences including the International Lung Health Conference in Liverpool, and has been an active member in We Are TB, a TB survivor group dedicated to advocacy and support. Tenzin is passionate about health equity, interactions of TB and race and class, advocating for better prevention, diagnostics, treatment, and continuing to share his experience in the efforts to bring more awareness of TB and to eliminate the stigma that affects patients and survivors. 

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