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

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

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

Eight years later, at age 27, Dikova’s health deteriorated rapidly and she suffered respiratory failure. Fortunately, she was in Vienna at the time 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.

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

Today, Dikova, now 32, advocates not only for Bulgarians to become organ donors, but also for improving the country’s health system to make such operations possible.

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

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Not only did Dikova play multiple sports throughout her life, she excelled in many, including tennis, a slew of medals to prove it. The transplant barely slowed her down. Today, she plays tennis, climbs mountains and rides a bike and urges others to do the same, stressing that they can live the same way they did before receiving a transplant.

“There is a wonderful life after a transplant and people need to be very active, especially those with a transplanted lung. At medical conferences there is more and more talk about how active we should be, unlike years ago when it was the opposite — take care, don’t exercise, don’t overexert yourself,” Dikova he told RFE/RL’s Bulgarian Service.

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Dikova certainly lives what she preaches.

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

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

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

And even as she struggled with her lung problems, Dikova rarely gave up her passion: skiing, even sometimes using an oxygen machine to help her breathing while she skied 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’ve been persistent. And my mother always inspired me not to stop, not to give up,” explained Dikova.

In 2009, Dikova graduated from high school in Sofia and decided to move abroad to continue her studies. Coming from a family of architects, she headed to Milan to study interior design, travel and enjoy a little dolce vita.

A shocking diagnosis

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

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

Returning home after graduation, Dikova launched several businesses, including an interior and space design firm. However, her health continued to decline and she opted to travel to Vienna for treatment on the advice of Professor Ventsislav Petkov, a Bulgarian doctor based there.

With her health deteriorating, Divoka was put on a waiting list for a lung transplant and in March 2017 she was rushed to emergency treatment while traveling with her father in Austria, which turned out to be a fluke .

Admitted to the hospital, she woke up 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 [organ waiting] list. When the condition is life-threatening, an operation is performed immediately. If I were in Bulgaria, we wouldn’t be talking now, as, unfortunately, it has already happened to several of my acquaintances,” said Dikova.

Dikova had undergone dramatic weight loss before the transplant.

Dikova had undergone dramatic weight loss before the transplant.

Bulgaria signed an agreement in 2014 with Eurotransplantation, a loose network of European states that coordinate and collaborate on organ transplants. However, in 2018, Bulgaria’s full membership expired. The reason? Bulgaria does not have enough registered organ donors, which makes it an unreliable partner for other countries that need them. Bulgaria is now only an associate member of Eurotransplant because it does not meet the minimum criteria for organ donors per capita.

Dikova one month after the transplant operation.

Dikova one month after the transplant operation.

According to data from the donor campaign, Yes! For Life!, only 18 organ transplant operations were performed throughout Bulgaria from the beginning of 2022 until October 5, including 11 kidneys, five livers and two hearts. No lung transplants were recorded for that period.

By comparison, the Vienna hospital where Dikova received medical care performs an average of about 200 lung transplants a year, RFE/RL’s Bulgarian Service has learned.

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

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

EU funding has been geared towards modernizing Bulgaria’s medical infrastructure, but that hasn’t stopped the exodus of Bulgaria’s best and brightest medical workers.

In 2019, Bulgarian healthcare 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.

Offering all the ailments of the Bulgarian health system, and especially those in need of organ transplants, Dikova is well aware of how lucky she has been.

“I’m breathing because of 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 or even take our lives,” she said, urging Bulgarians to become donors.

She recalled a poster that was taped to the wall above her bed in the Vienna hospital where she was treated: “God doesn’t want our body, God wants our soul.”

“After death, the soul goes where it should 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 Desislava Dimitrova of RFE/RL’s Bulgarian Service


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