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With Limited Transplants Available In Bulgaria, A Woman With New Lungs Campaigns For More Donors

Bulgarian Irene Dikova had a lung transplant in Austria five years ago.
Bulgarian Irene Dikova had a lung transplant in Austria five years ago.

SOFIA -- In 2009, Irene Dikova was an up-and-coming alpine skier and all-around outstanding jock. That all came crashing down like an avalanche when the then-19-year-old received news that would forever change her life.

She was diagnosed with cystic fibrosis, an inherited disorder that causes severe damage to the lungs, digestive system, and other organs in the body.

Eight years later, at 27, Dikova's health rapidly deteriorated and she experienced respiratory failure. Luckily, at the time, she was in Vienna, and was given medical care in the Austrian capital. She received a lung transplant, a rarity in Bulgaria, where the health-care system has long been on life support, prompting many doctors to leave for higher salaries elsewhere.

For those in Bulgaria in need of an organ transplant -- and the number is more than 900 -- there is more bad news: a lack of organ donors.

Today, Dikova, now 32, not only advocates for Bulgarians to become organ donors but for improvements in the country's health-care system to make such operations possible.

On October 9, Dikova took part in this year's Sofia Marathon. She was joined by other transplant recipients and doctors at the event, which coincided with the European Day of Organ Donation and Transplantation.

Dikova has not only played several sports throughout her life, but excelled in many, including tennis, a slew of medals attesting to that. The transplant has barely slowed her down. Today, she plays tennis, scales mountains, and rides a bike, and urges others like herself to do the same, stressing they can live much like they did before getting a transplant.

"There is a wonderful life after a transplant and people need to be very active, especially those with a transplanted lung. There is more and more talk at medical conferences about how active we should be, unlike years ago when it was the opposite -- to take care, to not exercise, to not overwork yourself," Dikova told RFE/RL's Bulgarian Service.

Dikova definitely lives what she preaches.

She became the first Bulgarian to participate in the European Heart and Lung Transplant Championships in Italy in 2018, winning a gold medal in tennis and a silver in ping pong.

Irene Dikova celebrates with the Bulgarian flag after winning a gold medal at the European Heart and Lung Transplant Championships in 2018.
Irene Dikova celebrates with the Bulgarian flag after winning a gold medal at the European Heart and Lung Transplant Championships in 2018.

And even during the time she struggled with her lung issues, Dikova rarely gave up her passion: skiing, even using an oxygen machine at times to help with her breathing as she swished down the slopes in Austria.

"I'm a former alpine skier, but it wasn't easy then…. But I'm an Aries both in soul and zodiac sign and I was persistent. And my mother always inspired me not to stop, not to give up," Dikova explained.

In 2009, Dikova graduated from high school in Sofia and decided to move abroad to continue her education. Coming from a family of architects, she set off for Milan to study interior design, travel, and just enjoy a bit of the dolce vita.

A Jolting Diagnosis

However, it was at this time that Dikova began experiencing shortness of breath, and contracted pneumonia twice, prompting her to visit a doctor, who gave her the jolting diagnosis.

The illness forever changed Dikova's life, adding regular doctor's visits and antibiotic treatments. Even though it was a devastating blow, the symptoms were relatively mild at first, allowing her to live much as before, playing sports and completing her master's degree in interior design at Milan's famed Istituto Marangoni.

Returning home after graduating, Dikova launched several businesses, including an interior and spatial design company. However, her health continued to decline and she opted to travel to Vienna for treatment, after advice from Professor Ventsislav Petkov, a Bulgarian doctor based there.

Her health deteriorating, Divoka was put on a waiting list for a lung transplant and, in March 2017, she was taken in for emergency treatment while traveling with her father in Austria, which would prove serendipitous.

Hospitalized, she woke two days later to find out that she had been operated on and had two new lungs.

"My luck was that I was in Vienna and that I was on the [organ waiting] list. When the condition is life-threatening, an operation is performed immediately. If I was in Bulgaria, we would not be talking now, as, unfortunately, has happened already to several of my acquaintances," Dikova said.

Dikova had suffered a dramatic weight loss before her transplant.
Dikova had suffered a dramatic weight loss before her transplant.

Bulgaria had signed an agreement in 2014 with Eurotransplant, a loose network of European states that coordinates and collaborates on organ transplants. However, in 2018, Bulgaria's full membership lapsed. The reason? Bulgaria does not have enough registered organ donors, which makes it an unreliable partner for other countries in need of them. Bulgaria is now only an associated member of Eurotransplant as it does not meet the minimum criteria for organ donors per capita.

Dikova one month after her transplant operation.
Dikova one month after her transplant operation.

According to data from the donor campaign, Yes! For Life!, only 18 organ transplant surgeries had been conducted across the whole of Bulgaria from the beginning of 2022 until October 5, including 11 kidneys, five livers, and two hearts. No lung transplants were recorded for that time.

By comparison, the hospital in Vienna where Dikova received her medical care performs some 200 lung transplants per year on average, RFE/RL's Bulgarian Service learned.

In Bulgaria, the number of people waiting for an organ transplant is currently 901, according to a count by RFE/RL.

It's not the only problem ailing health care in Bulgaria. The country is hemorrhaging doctors and nurses. Three out of four Bulgarian medical students in 2020 said they were thinking of leaving to work elsewhere, listing Germany, Austria, and Scandinavia, as top destinations, Euronews reported.

EU funding has been targeted to upgrade Bulgaria's medical infrastructure, but that hasn't stopped the exodus of Bulgaria's best and brightest medical workers.

In 2019, Bulgarian health workers took to the streets in protest, demanding a minimum wage of 460 euros ($449) for nurses and at least 600 euros as a starting salary for doctors.

Giving all the ills of Bulgaria's health-care system, and in particular those in need of organ transplants, Dikova is well aware of how lucky she was.

"I breathe thanks to a person who fell into brain death and his relatives donated his lungs. We must empathize with the pain of others, because we never know when we or our loved ones will hear a terrible diagnosis that can change our life or even take it away," she said, while urging Bulgarians to become donors.

She remembered a poster that was tacked to the wall above her bed in the Vienna hospital where she was treated: "God does not want our body, God wants our soul."

"After death, the soul goes where it needs to go and the body rots. Why does this have to happen, if you can give life to another person?"

Written by RFE/RL features writer Tony Wesolowsky based on reporting by RFE/RL Bulgarian Service's Desislava Dimitrova
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    Desislava Dimitrova

    Desislava Dimitrova is a correspondent for RFE/RL's Bulgarian Service based in Sofia. She graduated from the faculty of journalism at St. Kliment Ohridski at the University of Sofia  and has over 20 years of experience in print and online media.