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Portrait. A Hero of Our Time

Oxygen

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Lera Ivleva’s portrait
Lera, 22, from Yaroslavl. She lives in Zelenograd, where she is waiting for a lung transplant.
Lera’s hands on her oxygen concentrator
Lera, 22, from Yaroslavl. She lives in Zelenograd, where she is waiting for a lung transplant.
Dima Chepurko
Dima, 26, from Omsk. He lives in Moscow waiting for a lung transplant.
Lilya Rodyakhina
Lilya, 33, from Kazan. She lives in Moscow, where she is waiting for a lung transplant.
Lilya Rodyakhina
Lilya, 33, from Kazan. She lives in Moscow, where she is waiting for a lung transplant.
Lilya Rodyakhina
Lilya, 33, from Kazan. She lives in Moscow, where she is waiting for a lung transplant.
Tube
An oxygen tube.
Dima Chepurko with his wife
Dima, 26, from Omsk. He lives in Moscow, where he is waiting for a lung transplant.
Dasha’s hands
Dasha Malkova, 19, from Chelyabinsk.
Looking out
Dasha Malkova, 19, from Chelyabinsk.

Cystic fibrosis is a genetic disorder affecting the lungs that makes it extremely difficult to breathe. Waiting for a lung transplant can take years, so people with the condition will rent empty lonely apartments in Moscow, where there is a higher chance of finding a donor. A donated lung is viable for only 2 to 3 hours. COVID-19 has only made the situation worse, as the attention of pulmonologists around the world turned to battling coronavirus, and cystic fibrosis patients  were overshadowed. When I visited Lera, I learned that she had not been outside for several months because she was constantly hooked up to oxygen. Some of these patients have family who dropped everything to be near them. Like Dima’s wife, who was not deterred by his terminal diagnosis and married him. Like Lera’s sister who, after their mother’s death, dropped out of school because she didn’t want to lose her sister too. But what about those who are alone? How do they stay sane one-on-one with the disease? Some of them feel strong and try to work, like Lilya. She knits dogwear. But they can’t ever stop waiting. Waiting for the call that a donor has been found. For some, the wait is too long. 

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