TBEC member Fanny Voitzwinkler met Safar on a recent trip to Tajikistan where he told her his story. Safar lost his two brothers to MDR-TB and has just recovered from the very difficult treatment himself. He is now ‘determined to support anyone sick or vulnerable and seeks to now advocate for the elimination of tuberculosis in Europe, Central Asia and worldwide’. Safar has shared with us his powerful testimony which we present below.
Testimony of Safar Naimov, 34, Tajikistan
We were more like friends, me and my brother Nazarsho. Being brought up in large family following the collapse of the Soviet Union and subsequent civil war in Tajikistan was hard. We grew up taking care of each other in difficult moments, worked hard at school and would dream of a better life. Taking care of each other was a rule that endured from childhood into adulthood, a brotherhood responsibility to support and encourage each other until the end.
It all began in 2002 when Nazarsho fell ill with a cough that worsened until one day he vomited blood. A decade later at around 5am on November 27, 2012 and after years of persisting through everything that TB treatment entails he passed away at hospital. Nazarsho’s last months were extremely difficult. He spent five months in hospital on an oxygen machine to help him breathe and also began to swell. It was so distressing to see life departing my brother, a wonderful person who had wonderful ideas, plans beyond his personal interest, a person who wanted so much to live.
To make matters far worse, during this decade my other brother Ismoil also contracted TB. It was hugely heartbreaking to see Ismoil’s health deteriorate. It happened at a time when we thought Nazarsho’s condition was improving. We had begun to forget the past, writing short film scripts and getting excited about the future; looking ahead in life we were happy. It now became a hugely disappointing period. There is nothing more heartbreaking than seeing your loved ones in such a condition.
The night of February 19th 2008 was one of the most painful. We were at the dinner table when Ismoil slowly got up from his bed and left for the bathroom. He didn’t come back. Ten minutes later we found him dead inside the bathtub surrounded by blood. We had no time to mourn as were terribly worried about Nazarsho. He felt guilty and accused himself for what happened as Ismoil had looked after him when he first fell ill.
The physical and mental side effects of TB treatment are almost unexplainable. It was a severe punishment – vomiting, severe headaches, sensitivity to light, body aches, depression, hopelessness, confusion, and nightmares – you could not escape that my brothers and I all had to tolerate. In addition, the drug cycloserine caused terrible mental side effects for Nazarsho. It turned him into a different person, unable to sleep for fear. This added a further load of stress for me, not being able to leave him alone and skipping meals. He ended up having to stop cycloserine for ten days before the psychiatrist prescribed two more drugs after which his condition improved, though he now had to take a full palm of medicine everyday and felt terrible for causing me stress. I reminded him of our brotherhood responsibility and told him it was ok.
Finding the necessary treatment was another of our great struggles. After Ismoil’s death and Nazarsho’s ongoing illness we studied extensively online and learnt about MDR-TB and of treatment available in India. With MDR treatment not available in Tajikistan my brother decided to make the journey to New Delhi. The doctors found it amazing we had travelled so far, with some doctors insisting that anti-TB drugs were internationally available and there exists the same treatment practice everywhere. As soon as Nazarsho was started on the treatment in New Delhi he said he felt the best he had in seven years. We wished these medicines had been available in Tajikistan so he could have recovered earlier.
Thankfully, by the time we returned to Tajikistan MDR treatment was available, though only for people living in Dushanbe and surrounding areas. I wish MDR treatment was available regionally or at least in other towns[i]. Nazarsho had to interrupt his treatment for several weeks due to the process of changing his residency registration to Dushanbe.
I was also diagnosed with MDR-TB but could get treatment when we had returned to Tajikistan. Despite this there are still feelings of loneliness, living with TB is a dark and scary world with the feeling that death is inevitable. It was important for me to learn more about my disease and to meet former patients to tell me how they felt after treatment. The DOTS centre I found incredibly important for helping find solutions and for getting me back on track psychologically. Moreover, the USAID Health Care Project organized TB support group meetings for patients, patients’ relatives, and doctors. Here we shared our difficulties, learnt and encouraged each other, and more importantly we felt that we weren’t alone.
Our collective fight against TB did not just bring us down physically, but also financially. In the early stages there was no one else to earn for the family apart from Nazarsho and throughout the decade all of the family’s income was spent on treatment. We had to buy the majority of drugs ourselves plus finance the travel to India. Nazarsho was always concerned about our finances, he wanted so much to get cured and go back to work to save the family from debts. These financial problems added an additional burden of stress that was the last thing we needed.
In the same month that Nazarsho passed away, I completed my treatment and recovered. I’m now doing well, with my job and a healthy life. Only the pain of losing my loved ones remains in my heart. I am broken inside with memories but am revived looking to the future determined to support anyone sick and vulnerable. It sounds easy but is challenging, it requires hard effort to invest. It’s worth striving. It’s the best deed ever.
[i] Recently another MDR care hospital started in Khatlon region