Today we’re sharing the story of Safar Naimov and his two brothers Nazarsho and Ismoil. Fanny Voitzwinkler, European Policy & Advocacy Manager for Global Health Advocates France, an ACTION partner, met Safar on a recent trip to Tajikistan. Safar lost his two brothers to multi drug-resistant TB (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 advocate for the elimination of tuberculosis (TB) in Europe, Central Asia, and worldwide. Safar shared with Fanny the powerful testimony presented below. To learn more about the TB epidemic in Europe, visit the website of the TB Europe Coalition: http://www.tbcoalition.eu/
Testimony of Safar Naimov, 34, Tajikistan
We were more like friends, me and my brother-Nazarsho. We were brought up in a large family and life was difficult following the collapse of the Soviet Union and subsequent civil war in Tajikistan. Hunger was common then. We grew up taking care of each other in all difficult moments. We studied hard at school and we would dream of having a better life.
In 2002 I was studying in India while my brother Nazarsho worked as an interpreter in Dushanbe. He was the only member of our family earning money. Nazarsho lived in a hostel with bad sanitation, as is the case with most of these places. It all began when Nazarsho fell ill with a cough for several months which worsened until one day he vomited blood. Ismoil, my other brother (also a student), took care of Nazarsho in the apartment they now shared. Eventually, Nazarsho was admitted to a clinic where he was diagnosed with TB and started on treatment. After one month he felt better and returned to continue his job as there was no one else to earn for the family. Though he continued the treatment, after some time he became sick again. He was readmitted to the TB hospital and remained there for four months. We had to buy most of the medicine including vitamins and drugs to enhance immunity. All the family’s income was spent on Nazarsho’s treatment.
In 2004 I returned home from India. When I asked where Nazarsho was I was told that he was at the hospital and was asked to keep this quiet to avoid any stigma. I immediately visited him; he looked healthy and eventually continued his treatment from home with visits to DOTS centre for another four months. Only one or two of the necessary drugs were available here, the others we had to buy ourselves.
Happily for us all, Nazarsho’s condition improved. Trying to forget the past and get excited about the future, we would write short film scripts and go out shooting together. We were both mad about making films. We looked ahead in life and were happy. Once again, Nazarsho’s health started to deteriorate. Even worse, my other brother Ismoil became sick, feeling weak and vomiting blood and was admitted to the TB hospital.
This was a hugely heartbreaking, spirit-breaking and disappointing period. There is nothing more discouraging than seeing your loved ones in such a condition…
We had to take loans to cover the costs of medicine. Both brothers continued treatment at home but they lost trust of drugs. This was a common opinion then as there was far less control on quality. My brothers used to say that taking medicines were just “formality”, with no real effect.
At home we were burdened with stress and fear.
The night of February 19, 2008 was the most painful. We were at the dinner table when Ismoil slowly got up from his bed and left for bathroom. He didn’t come back. Ten minutes later we found him dead inside the bathtub with blood all around.
We had no time to mourn. With Ismoil’s death we were now terribly worried about Nazarsho, afraid the same could happen to him at any moment. Nazarsho felt guilty and accused himself for what happened. By now his left lung was no longer functioning and the other side partly damaged. He had a constant fever and was coughing up blood all the time.
After almost seven years of Nazarsho’s illness, psychologically and financially we were all down. Nazarsho was always concerned for the family’s economy. We constantly tried to avoid this theme, but he always talked about it. He had such strong will power and wanted so much to get cured and go back to his job to save the family from debts.
We studied extensively for the possibility of treatment abroad and learnt about MDR-TB and of treatment available in India. We felt so happy. Getting information alone was a medicine in itself that Nazarsho said revived him spiritually. For me it was as if he was already cured.
However, his blood spiting worsened and each time we thought it may kill him like it had Ismoil. Immediately we borrowed USD 4000 from one of our relatives and arranged our visit to India.
On our journey, we spent three days in Kabul in the freezing cold. Two days later we flew to New Delhi and headed to Lala Ram Sarup TB Hospital. The doctor on duty and some nurses received us warmly and with sympathy admitted my brother. They found it amazing as we were coming a long way from Tajikistan only for treatment. The doctor insisted that anti TB drugs are internationally available and there’s the same treatment practice everywhere. He could not believe that MDR treatment was not available in my country Tajikistan.
I was allowed to remain and look after my brother. I wore a mask the whole time as a precaution. Nazarsho was more worried than me, every time reminding me to be careful.
Sputum samples were taken to test for MDR-TB and first line treatment was started for my brother. After almost three months the reports came back and accordingly the MDR treatment. After ten days Nazarsho said he felt the best he had in seven years. We wished these medicines had been available before so he could have recovered earlier. We did worry about how he would cope with two more years of treatment after seven years of medication already.
After two months of MDR treatment Nazarsho developed a strange side effect. The first time it occurred I was scared to death. We were talking when suddenly he froze. I asked what happened, he was silent. I asked several questions, then he answered my first question, and after each long interval he answered each subsequent question. Doctors asked to stop the Cycloserine medicine for ten days then continue it. Everytime he started this medicine he developed the same symptoms again. He kept asking me not to sleep in the night, not to leave him alone. I skipped my meals. There was no one else to replace me. Some attendants always wanted to replace me but my brother wanted only me to be with him. Nazarsho was so protective of me; he wouldn’t ever behave like that had he been in his mind. I was so stressed and tired without sleep or meals. It was horrible to be alone. I was ready for whatever happening to me, but if only my brother could survive.
The psychiatrist prescribed two more drugs so now he had to take a full palm of medicine every day. Thankfully he became better mentally. He cried and apologised but I explained to him that this is brotherhood responsibility. It’s been the rule since childhood. It’ll be there till the end. I kept him encouraged. He needed support. He had to get better as he wanted so much.
I became very thin. I started feeling weak. I felt very tired as never before and had night sweats. The whole mattress got wet by the morning. I thought my sweats were because of the unbearable Delhi heat. One day my brother noticed my condition and asked me to measure my temperature, it was more than 39 degrees. I was amazed. I visited a doctor immediately. My sputum test was negative but there was something suspect in my chest x-ray and he asked me to have another type of x-ray. It was the day we had a ticket back to Tajikistan and so the doctor asked me to visit a hospital as soon as I arrived.
While still in Delhi, we purchased enough MDR drugs for six months. We decided we would come back to India for further treatment.
Arriving in Tajikistan I went to see the doctor who gave me intravenous fluids and some antibiotics. It didn’t help at all. My temperature never went below 39 degrees. I was told I had chronic bronchitis and was discharged with antibiotics. I decided to visit a TB clinic where they confirmed that I had TB and sent me to a TB hospital located in the hillsides outside of Dushanbe – the same place I visited my brothers.
Thankfully, by 2009 MDR treatment was finally available in Tajikistan, but only in this hospital for the people of Dushanbe and surrounding areas.
Nazarsho continued MDR treatment at home with the medicines we brought from India. A week before his medicines were finished my sister took him to a TB clinic requesting admission. After seeing my brother the doctor talked to my sister and said that he did not need to be admitted. He has to be kept in a separate room, isolated and well taken care of. Feeling bad, my sister got nervous and disputed with the doctor. One replied that they have the best specialists in Tajikistan and that visiting India was unnecessary.
Finally Nazarsho was admitted to hospital. For this we had to register him as a resident of Dushanbe. I wish MDR treatment was available regionally or at least in the towns. His treatment was interrupted for several weeks due to the process of changing residency registration to Dushanbe.
I was discharged and my brother was admitted to the same hospital. I didn’t tell him about my TB because it would have caused him such worry. I continued my treatment at DOTS centre nearby while he started MDR treatment right from the beginning with more challenges ahead.
My disease and recovery dates were between June 2009-November 2012. During the first two months of hospitalization I had a sensation around my lung area while breathing that felt like needles. It felt as though there were knives all around my lungs. One day I was X-rayed the doctor was surprised to see there was a collection of fluid in my left lung. He immediately sent me to the operating theatre to remove the fluid; this stopped my fever but overall made little difference. I gave another sample but had to wait for 72 days for results. Throughout I felt stressed and worried that this delay could worsen the disease. Finally the report came and accordingly I had to start MDR treatment.
I can’t describe the feelings you get from MDR treatment in words. It was like a severe punishment you could not escape. Nobody could help. I would think it was a useful punishment; it was necessary to suffer in order to get cured. I felt as though my body and mind were a battlefield for pills and germs.
Vomiting, severe headaches, sensitivity to light, body aches, and worst of all feelings of depression, hopelessness, confusion, absent-mindedness, and nightmares, these were all issues I experienced during treatment. I needed to learn more about my disease and read brochures on TB to try find success stories. I wanted to meet former patients to tell me about how they felt after treatment. All the time I needed someone with experience to tell me that I will be cured, that everything will be fine. These words are more valuable than gold for a TB patient. Living with TB is a dark and scary world. One feels as though death is inevitable. I felt that my body was too heavy with the burden of TB for my soul to cope. In this angle of life everything we grew up with looked completely different, not as meaningful, tasty, or interesting as it had always been. To a healthy man it sounds like an illusion, but it is very real.
DOTS center is something I found incredibly important. Daily I met my doctor and nurses and found solutions for my problems. Also visiting DOTS center put me on track psychologically. The USAID Quality Health Care Project organized a TB support group meetings for patients, patients’ relatives, and doctors. I found it very important as here we shared our difficulties, learnt and encouraged each other, and more importantly we felt that we weren’t alone.
I tasted all the difficulties the second line medicines involve and realized how brave my brother Nazarsho was having taken these pills for so long while willing to continue in order to survive. After one year of his treatment he recovered. He looked healthy as before. We were all happy to see him back to life.
Unfortunately, it was temporary. This was probably because of the treatment interruptions as a result of the cycloserine side effects. In July 2012 he was taken to the TB hospital and for almost five months he had an oxygen machine to help him breathe. He never improved and began to swell. As his swellings reduced, doctors discharged him saying he could be taken care of at home because the hospital had no beds. At home he developed swelling and we took him back to hospital. The oxygen machine was the only reason to keep him in hospital. It was the last remedy to support him. However, the hospital was short of oxygen machines, sometimes they had to take the machine to other more serious patients and as Nazarsho became serious they would return it. Here I thought if ever anybody wants to do charity, oxygen machines are a very important piece of equipment to be donated to the hospitals.
As a healthy human we take life and all its offerings for granted, but seeing the sick man struggling to breathe only teaches one the real value of health and all of life’s offerings.
Finally we took an oxygen machine worth $800 on loan to help my brother’s breathing and kept him at home. 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.
For a week he was semi-conscious and then was unable to pass urine and developed swelling. He was fully unconscious so we took him back to hospital.
At around 5 AM on November 27, 2012 Nazarsho passed away at the hospital.
In the same month, I completed my treatment and recovered. Only the pain of losing my loved ones remains in the heart. I’m now doing well, with my job and healthy life. I am broken inside with memory of the past but am revived looking to the future determined to support anyone sick and vulnerable. It sounds easy but it’s 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