MDR-TB Patients Stories

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      To Die or to Die, That Is The Question

Ciprian    Ciprian has MDR-TB. He knows he is dying. At first he had sensitive TB. He was young, bold, he couldn’t except the illness, so, as soon he could, he quit the treatment and carried on with his life, like every young man tends to do. He got sick again, which was a surprise for him: another treatment, a longer one, harder to endure. He quit again and the illness was back again, much worse. He got angry, started to drink alcohol, start to have problems with his family, with money, because his health didn’t allow him to work any longer. He changeed a lot of doctors and a lot of treatments and TB transformed in MDR-TB, then in XDR-TB. There are no available drugs for him, now, in Romania. It’s been eight years now since came to sanatorium. He practically lives in sanatorium. He quit alcohol few years ago. He goes home once a year for administrative reasons regarding his pension an every time he goes home, he is received with the same question said in the same breath: “Areyouherewhenyoulive?”
    His family does not call him, even for Christmas. If he recovers, he will have no place to go. If does not recover, he can remain in hospital for the rest of his days. So, the question is: To die or to die?
    The saddest thing is that Ciprian is a clever person, he has resources allowing him to be integrated in society, and above all, he can be saved, he can live and his salvation is less expensive than keeping him in hospital until the end of his days, because he cannot be released: he can spread the disease. Photo Tom Maguire, Results UK, November 2013

      A Candle Ending…

Iulian    Iulian is dying now, probably when you are reading this, he will already be dead. His wife’s tears are dry, her anxiety is high: she has two daughters to rise and most of the time not enough food on the table, because her man is no there to provide.
    Iulian has been doing hard work constructions all his life. He has no papers to proof this, so he has no pension, no money at all. Every time he got sick, he received the treatment, he felt better and quit the treatment because he had to work. Hard. Now he has XDR-TB and he receive no proper treatment because in Romania is not possible yet. He is lying on the hospital bed, depending on the oxygen source, hoping he will survive, worrying about his children and his wife, sometimes crying, sometimes being too tired to suffer, just existing, breathing…still breathing.
    His wife plan to live her children in her sister’s care in order to find something to work in Bucharest. A very desperate plan because she has no studies, she has no connections, she has almost no chance. But she has all the “chances” of contracting her husband illness when she becomes wicker and weaker because of the difficulties in her future life. Her biggest worry concerns her children: are they gone be well? No one can give her the answer she needs.Photo Tom Maguire, Results UK, November 2013

      Ionel and Cristina…Together in Illness and in Death

Ionel si Cristina    Ionel has chronic MDR-TB. And diabetes. He shares this story with many MDR-TB patients: hard work, no proper food, he quit treatment when he felt better. During the last years he spent most of the time in hospital where met her wife. He is happy and very sad in the same time. Happy because he is not alone, he has a wife who loves him, who wants to take care of him, to support him every time he feels desperate, ashamed because of his weaknesses, because he can’t support his family, he can’t spoil his wife. But above all his most excruciating pain is that he believes her wife has MDR-TB because of him: they have been staying together in the same room for a very long time, her wife, Cristina, has lost o lot of weight and didn’t respond to medication; now she is receiving the same treatment as her husband. If only could this be useful…But is not. They need various drugsthat they cannot receive because in Romania is not possible yet.
    So they will die. When and who will be first, it’s hard to tell.
    Cristina’s father had TB. When her father was ill, there were not many technical possibilities of diagnosing MDR-TB, so it’s very hard to know whether she had MDR-TB from the very beginning or whether she contracted it in time, especially because her father died because of TB. Now she is hanging on every day, denying her faith, sometimes furious, sometimes making plans about what she wants to cook, how to put her clothes into the closet, how to spend Christmas with her family. Hoping, but getting closer to her death.
    They are very young and they can be saved. But not now, not yet. They are put in the hold, but they cannot put their sickness on hold, they cannot put their death on hold. So, they will stay together in illness and in death. Photo Tom Maguire, Results UK, November 2013