A long way back after TB diagnosis

“I still do not know how I got the disease. The strain that I was carrying had not been reported in Sweden before, and has not been seen since. I had been travelling, but not to the former Soviet Union or any countries in Africa. I could have been infected on an airplane, but just as well on the underground, according to my doctors. It all started around Christmas 2014 with a really bad stomach ache. I had trouble eating.

I went to a doctor several times, but I was never given a proper diagnosis. One morning I woke up and I could not breathe without my body hurting. At the hospital, I was x-rayed because they suspected that I had a blood clot in my lungs, but there was one doctor who had seen tuberculosis before, an he was able to confirm it rather quickly. After a culture test and an eight-week wait, I was informed that I had a multidrug-resistant form tuberculosis and needed to be put in isolation at the hospital. It was a tough time. You live at the hospital, and the doctors wear masks when they enter your room. My family were allowed to visit, but only outdoors in an access gallery. And you cannot keep yourself from googling either. At the start, I did not think I was going to survive so I wrote letters to my children.

I was isolated for a total of four months, but two days before Christmas Eve in 2015 my tests showed that I was no longer contagious, so I was allowed to go back home. Now, that was a Christmas present! But then I had to go on medication for another 18 months and report sick the entire time because I was feeling really ill. I view life differently now. I am thankful for every day and for living in Sweden where we have access to health care like this.”

As told to: Fredrik Hedlund, first published in Swedish in Medicinsk Vetenskap No 3/2018.