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Mon June 3, 2013
Love In The Time Of TB: A Young Family Fights An Ancient Foe
Originally published on Tue June 4, 2013 8:33 am
Oxana and Pavel Rucsineanu fell in love under the drug-induced haze of powerful tuberculosis medications. It was the summer of 2008. They were both in their late 20s, and they should have been in the prime of their lives.
But instead, Oxana and Pavel had a version of TB that is resistant to most drugs. They were living in a crumbling hospital in the Moldovan city of Balti. The TB ward was a version of hell for Oxana. The air was hot and sticky. Neither of them wanted to be there.
"For how long," Oxana asks, "can you stay and swallow these pills, watching the walls and doing nothing?"
The treatment for drug-resistant TB takes a minimum of 18 months, but it can last for years. Boredom eats away at you, patients say, the same way the TB bacteria eat away at your lungs — slowly, day after day.
Oxana says the tedium on the ward drives TB patients crazy. "There are drunk problems there. People are having fights," she says. "This is again because they are not doing anything. It's terrible." The two-dozen pills she was taking made her nauseous, she says. The medicines fogged her brain and sent her "into the cosmos."
TB is on the decline globally, but drug-resistant, hard-to-treat forms of the disease continue to hold a tenacious grip, particularly in countries of the former Soviet Union, like Moldova.
Pavel says he first met Oxana when he came into her dormitory to fix a faulty telephone jack. But Oxana remembers it differently. She says they first met in the common area of the ward, where they commiserated about the terrible side effects of the TB medications.
However it first happened, Oxana says what was important was the connection the two found with each other.
"It really helps when you find someone who has your same problems, who understand all your thoughts, who understand all your fears," she says. "All the people live in fear while having TB because it's really difficult." Once on medications, people have about a 50 percent chance of surviving MDR-TB, according to the World Health Organization.
Oxana and Pavel were still in treatment when they decided to marry in 2009. Their doctors gave them permission to have a small open-air wedding in a park — despite the fact that active TB infections spread through the air.
Oxana was cured in 2010. Pavel, however, is still sick, and his doctors say his form of the disease has evolved to be incurable. Pavel has extremely drug-resistant TB, or XDR-TB, a version of the infection that has become a growing problem around the world, particularly in India, Eastern Europe and Southern Africa. Pavel's doctor, Tetru Alexandriuc, refers to XDR-TB as an "infectious cancer."
Earlier this year, Oxana gave birth to their first child, David. But Pavel remains ill, and can't live at home with his new baby.
Instead, he stays in room No. 5 on the third floor of a drab, Soviet-era TB hospital on the edge of Balti. There's one toilet on
his ward that's shared by 40 men. The showers are being renovated and haven't worked for months. Pavel goes to Oxana's flat once a week to bathe.
When he visits Oxana and their baby, Pavel wears a pale blue surgical mask to try to protect them.
Oxana says she won't accept that Pavel's case is hopeless. "He is planning to get cured," she says. Then she corrects herself, "We are planning to get cured, even if there are cases where they're saying there is no use of swallowing the drugs because there is no cure."
Oxana has the slightly weary appearance of a sleep-deprived new mother. As she rocks David, she says TB has dominated her life for five years. "Sometimes we are talking to TB and trying to convince it to just leave us," she says, "because we deserve a second chance."
Even now, although Oxana has rid herself of the disease, TB keeps her husband away. She says she feels at times like a single mother. But, she adds, "We are not giving up. We have a good reason to move on." She nods toward her baby. "This is David."
Even Pavel's doctor, Alexandriuc, says the baby is a new force in Pavel's treatment. The baby has strengthened the father's will to live, the physician says, and that commitment could prolong Pavel's life.
ROBERT SIEGEL, HOST:
From NPR News, this is ALL THINGS CONSIDERED. I'm Robert Siegel.
AUDIE CORNISH, HOST:
And I'm Audie Cornish.
Tuberculosis is the second most deadly infectious disease in the world after HIV. It claims more than a million lives each year, mostly in Africa and Asia. But TB is also on the rise in Eastern Europe. A particular concern are new strains that are nearly untreatable with drugs available there.
Over the coming days and weeks, we'll be looking more closely at tuberculosis around the world. Today, NPR's Jason Beaubien has the story of one couple's struggle in the former Soviet republic of Moldova.
JASON BEAUBIEN, BYLINE: In 2008, Oxana and Pavel Rucsineanu were both in their late 20s. They should have been in the prime of their lives, but instead they were patients on the tuberculosis ward in the Moldovan city of Balti.
OXANA RUCSINEANU: We met in the hospital. And we are not the only couple that have been created there.
BEAUBIEN: It was the middle of summer. Oxana remembers that the air on the ward was hot and sticky. They both had drug-resistant TB and were taking two dozen pills a day. The pills made Oxana nauseous, fogged her brain and, in her words, would send her into the cosmos. Oxana says she and Pavel had long talks commiserating about the intense side effects of the medicine.
RUCSINEANU: It really helps when you find someone who has the same problems, who understand all your thoughts, who understand all your fears because all the people live in fear while having TB because it's really difficult.
BEAUBIEN: The treatment for drug-resistant TB lasts for 18 months, two years, sometimes even longer. For Oxana, her time on the TB ward was a version of hell.
RUCSINEANU: For how long you may stay just - and swallow these pills and watching the walls and doing nothing.
BEAUBIEN: And she says the ward at times was chaotic.
RUCSINEANU: That's why there are drunk problems there. People are having fights. Different - this is, again, because they are not doing anything. It's terrible.
BEAUBIEN: Pavel and Oxana were desperate to escape this world. So in 2009, they decided to get married. With permission from their doctors, they had a small open-air wedding in a park. Oxana finished her treatment a year later. She now lives in a grey, concrete, Soviet-era apartment block. Pavel is still sick and shares a room with four other men at the TB hospital. In December, Oxana gave birth to their first child, David.
RUCSINEANU: We just yesterday baptized him. Yeah, baptized him.
BEAUBIEN: The TB hospital in Balti where Pavel and Oxana fell in love is divided between two buildings, both of which are in need of repair. Pavel now lives in room number five on the third floor of the more modern building: a drab, boxy, Soviet-era hospital.
ANDREI: (Foreign language spoken)
BEAUBIEN: It's lunch time and Pavel's roommate Andrei offers to pick up his porridge and juice. A nurse comes in to give one of the men his daily medications, but much to her chagrin, she discovers the man has been missing for several days. A carpet is draped over the windows to block the icy gusts of wind that push through the window frames.
PAVEL RUCSINEANU: (Foreign language spoken)
RUCSINEANU: Oxana seems unfazed by the gaunt men in the room or the bacteria that may or may not be floating through the air. She translates for Pavel, who says that day after day there's nothing to do here.
RUCSINEANU: No, no. And this is my Kindle, and bibliotheca.
RUCSINEANU: This Kindle is my library. No libraries. Nothing.
BEAUBIEN: Pavel is reading a book by Russian novelist Valentin Pikul. He says the Kindle saves him from going insane with boredom. Asked what it's like to live for years on the TB ward, Pavel sighs and gives a one-word response.
RUCSINEANU: (Foreign language spoken)
RUCSINEANU: It's a tragedy to be here.
BEAUBIEN: Why? Have him explain why.
RUCSINEANU: (Foreign language spoken)
RUCSINEANU: (Foreign language spoken)
RUCSINEANU: Because you are apart from your family and you are apart from society.
BEAUBIEN: After lunch, the nurse brings Pavel his medicine. She pours 14 pills into his palm. Pavel swallows the fistful of drugs in one gulp and washes them down with a mug of water.
BEAUBIEN: At other times of the day, he'll take 12 more tablets, and on some days, he also gets two injections. Pavel picked up TB in prison in 2004 while he was serving a two-year sentence for what he only wants to refer to as his mistake. By the time he got out, his TB had already become drug-resistant.
The nurses on his floor now speak highly of him. They say he takes his treatment seriously. He's helpful on the ward, repairing electronics, offering encouragement to the other men. One nurse says she wishes all her patients were like Pavel.
DR. TETRU ALEXANDRIUC: (Foreign language spoken)
BEAUBIEN: His doctor, however, Tetru Alexandriuc, says Pavel's TB has become basically untreatable.
ALEXANDRIUC: (Through translator) Our patient Pavel, because he interrupted his treatment several times, he came to have a very serious form of tuberculosis. As one of the scientists who studied TB said, this is a kind of infectious cancer. We can say it's an incurable form of tuberculosis because we have no other medicines.
BEAUBIEN: Dr. Alexandriuc says they've stabilized Pavel, but he's still very sick. He's still infectious. And with the medicines currently available in Moldova, there's little hope of him overcoming TB. What's happened to Pavel's TB is similar to what's happened to tuberculosis around the globe.
Over time, the bacterium has shifted. It's adapted to survive. It's become resistant to one drug after another. The difference between Pavel and TB is that the bacteria keep getting stronger. The options for Pavel keep shrinking.
BEAUBIEN: On a weekday at noon, Oxana is home alone with their baby. David just turned 3 months old. He's round and soft and one of his ears sticks out, which Oxana finds incredibly cute. Oxana won't accept that Pavel's case is hopeless.
RUCSINEANU: He is planning to get cured. We are planning because you cannot imagine (unintelligible). We are hoping even if there are cases that where saying directly that there is no use of drinking, swallowing the drugs because there is no cure.
BEAUBIEN: Oxana has the slightly weary appearance of a sleep-deprived new mother. As she rocks her baby, she says TB has dominated her life for the last half a decade. Even now after she herself is cured of it, the disease is keeping her husband away. She says she feels at times like a single mother.
RUCSINEANU: Sometimes I do while being outside when I see couples and two babies. But we'll be OK. We are not giving up. We have a good reason to move on, and this is David.
BEAUBIEN: Even Pavel's doctor says David is a new force in Pavel's treatment. Dr. Alexandriuc says the baby has strengthened Pavel's will to live, and this could prolong his life. But prolong it for how long is unclear. Jason Beaubien, NPR News. Transcript provided by NPR, Copyright NPR.