Experiences of a TB patient…from our part of the world

Today’s blog entry is the story of a Tuberculosis patient, who generously offered to share her experience with us in support of our outreach work and to strengthen the general awareness about TB.

At the same time, our patient represents the perfect example as to why we should not let TB fall into oblivion. In fact, the story is not about an old lady, who suffered from the disease in the 60’s. It’s also not about an immigrant, who brought the illness along with her from her home country. It’s not even about a homeless woman, who lacks the education and financial means to protect herself effectively or seek proper medical attention. The story deals with the experiences of a 19 year-young woman, who during her final year of high school had to live through the illness and suffer through the medical and social problems associated with Tuberculosis.

Fortunately, she has recovered well from the illness and has decided to support our outreach efforts. I hope you will let the story and the patient inspire you, as it did for me, to continue to raise awareness about TB.

It started near the end of 2011. I attended my final year of high school and was focusing on doing my Abitur [similar to a baccalaureate or final high school exams, editor’s note]. Ever since my childhood, every winter I contracted bronchitis and just like all the years before, I developed a cough again this year. It wasn’t unusual for me either that my cough would last longer than for others. Hence, I wasn’t really worried about it. However, on December 21st I suffered from a migraine attack with aura while sitting in class. That’s when I started to become concerned. It was the first time I had a migraine – at the time I had no idea that it was a migraine from which I was suffering. I immediately consulted my doctor, who referred me to a neurologist for some neurological scans. To my relief, the doctors found me to be healthy and attributed the migraine to stress. As a result, I decided to do more sports to reduce my stress levels. However, that didn’t work either. I simply felt beat. I had no appetite anymore, lost weight (around 10kg / 22 lbs) and felt exhausted. In January I consulted a doctor once more, since the symptoms were still present and in addition I started to experience some pain in my back, which I suspected had something to do with my lungs. I had my blood work done and underwent several exams testing the functionality of my lungs – none with abnormal results. I constantly asked myself, why I kept feeling so exhausted. Was it due to stress at school? Am I ill? What’s wrong with me? Why can’t the doctors give me an explanation? These thoughts kept going through my mind the entire time. After several more doctor visits, none of which yielded any conclusive results yet again, I started to become desperate. I knew that something was wrong with me. I searched around on the internet and came across all sorts of terrible diseases. I was afraid, afraid to suffer, afraid to die. The uncertainty almost made me lose my mind. It only grew worse. All I wanted to do was sleep – and sometimes I wished never to awake again.

It was April 27th, 2012. As usual I was at school, felt listless and had to force myself for every step I took. I had no more energy, both physically and mentally. Following the pleading of my friend, I went to see a doctor once again that day. The doctor examined me and ordered another blood work. When I held the results in my hand – black on white – I was really afraid, preparing for the worst. The two days until the appointment with my IM [doctor of internal medicine, editor’s note] felt strange. I was so calm and had already let go of my life mentally. When the IM diagnosed pulmonary TB on May 4th 2012, I was relieved and hope returned, since TB is curable. I just didn’t know what would happen. The same day I was referred to a specialty clinic.

Everything felt so surreal as if one were dreaming and were to be woken up soon. At the beginning of my stay at the clinic I cried a lot and just wanted to go home. However, as time passed I started to feel better. Sometimes I felt like I was living someone else’s life, but my family and my faith gave me strength. In the clinic I rediscovered how to live, how to enjoy life, started thinking about the future again, was able to enjoy the little things in life. After four weeks in the clinic I was still contagious, but I was discharged under the condition of having to wear a protective mask. The day of my discharge was like the start to a new life. I was so glad to be home again and to be alive. There were also times when fear would take over again, because every week a new microscopy exam was done and every week I clamored for a negative result. However, I was contagious for a relatively long time (until the beginning of August), so that my pyrafat [i.e., pyrazinamide – one of the first-line anti-TB drugs, editor’s note] prescription had to be extended by one month. After a few weeks at home I was barely able to walk. My joints hurt with every movement. Neither my pulmonologist nor my rheumatologist knew where these pains were coming from. Only after I stopped taking pyrafat did the side effects cease. In August I finally received the long-awaited news that the results of my bacterial culture were negative and I was no longer contagious. I was (and still am) so grateful to be healthy again.

The reactions to my Tuberculosis infection were extremely varied and ranged from playing down the severity of the illness to compassion and shock to breaking off all contact. It was an experience that truly changed me and I became aware that physical and mental health are the most important things in life and that one should make the best of it. I successfully retook my Abitur in September and have started an internship. Based on my faith I’m convinced that there was a point to my sickness. During my time in the clinic I came across an adage that fits my situation well: Looking back on life can only serve to understand things better, but life has to be lived moving forward.

 

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