Real stories. Shared experiences.

Bulgaria

A letter to the future: Breathe

For me, March 9, 2016, marks the beginning of my second life — a better life, but also one filled with meaning. Few people can say that they were born twice. I was born for the second time in Vienna, Austria.

I carry within me a part of someone I know nothing about. I do not know her/his name, face, or life story. But thanks to her/him, I have been able to live a full life for the past ten years. I will always be grateful to her/his family for giving me this priceless gift.

I am also deeply grateful to the transplant team at the Thoracic Surgery Department AKH Vienna, led by Prof. Shahrokh Taghavi MD, who tailored my new lungs to me like a bespoke shirt, because the donor organ had to be reconstructed to make the lung transplant possible. I am grateful to Fatima Sehic, the nurse who was the first person to take care of me at the Vienna clinic when the donor situation became a reality. I will always remember her words: “It’s just an operation.”

Looking back from the distance of time, I try to immerse myself in memories that make me realise just how incredibly lucky I am. Few people can say that their lives have been filled with so many challenges and trials. Mine has.

When you are fighting for your life, there are no reservations. There is only one goal — to stay here. 

I studied radio journalism and later specialised in international relations. Perhaps the knowledge I gained over the years helped me to fight, to search for solutions and, ultimately, to save my own life — and to receive my second chance.

My friends have always described me as overly emotional, sometimes even unstable. Yet at the same time, they have admired my ability to find a way forward and to turn my emotions and passion into action. Perhaps that is the secret of my success.

After undergoing a double lung transplant, my friends told me that I had accomplished something extraordinary. I do not see it that way. For me, it was not a heroic feat. It was simply part of my fight for survival.

I waited nearly 11 months for my donor opportunity. And when I received that long-awaited call telling me that the medical aircraft would land in almost two hours to take me to the safest place for me – Vienna - I went to the airport in an ordinary taxi. It wasn’t like in the movies. There were no sirens, no ambulances, no police cars. There was just one plane, one flight, and one woman who knew she was flying to Vienna to fight the most important battle of her life – to defeat death. I didn’t know what awaited me, but I was calm.

When I woke up in the intensive care unit, I struggled with hallucinations during the first few days. They felt incredibly real. The hardest thing for me was realising that what I was seeing was the result of my own imagination. No one had prepared me for that.

I must have shocked the medical team quite a lot, because for three days I insisted that I was somewhere in Canada. I had never been there, but perhaps on a subconscious level, because before the operation I had read that the first successful lung transplant had been performed there, my imagination was taking me on a journey.

And, as if by another strange coincidence, the first song I heard on the radio in the intensive care unit was once again by a Canadian artist – Justin Bieber.

I have no logical explanation for it, but two years after my transplant, I added another language to the collection of foreign languages I speak. I learned Croatian.

Maybe this is somehow part of my donor’s memory – the memory of the person to whom I will be forever and infinitely grateful.

Today, ten years later, I have returned to my profession 100%.  I work at the Bulgarian National Radio, in the cultural programme “Hristo Botev.”

I lead an incredible team of 54 radio journalists in the News, Education and Culture department. Every day, we tell interesting stories, ask questions, and search for answers on air.

Every day, I am reminded of how fragile – and at the same time, how priceless – life is. That is why my cause is to talk more about organ donation. Because one “yes” can save up to eight human lives.

What was your journey like? What challenges did you encounter, and what—or who—helped you along the way?

When you live for 7 years (2009) with a rare lung disease — pulmonary arterial hypertension (PAH) — you learn to take every opportunity that modern medicine can offer. You have to stay one step ahead of the disease. But at the same time, you have to keep living: to work, to keep your mind active, to make plans, to love, to laugh — and never allow the disease to take your entire world away from you. 

I knew that one day I would hear the words waiting list, transplantation, and medical flight. The only thing I was truly afraid of was hearing my doctors say that I was no longer a suitable candidate for transplantation, that my body had become too weak to withstand the operation.

When that moment finally came, there was no time for fear. I knew this was my only chance. I am a Bulgarian patient who managed to overcome the Bulgarian bureaucracy in time and reach the life-saving surgery I desperately needed. It took me almost two years.

When I tell my story, I always say that I am a product of three healthcare systems: the Bulgarian, the Greek and the Austrian.

Bulgarian doctors managed to keep me stable from 2009 to 2014. But then the time came when my body needed intravenous therapy — a treatment that is still not available in Bulgaria to this day.

That was when my biggest battle with the Bulgarian healthcare authorities began.

In June 2014, I was placed on the Bulgarian waiting list for a lung transplant. But do not imagine that it worked like a dynamic, computer-based system, as it does in many other countries.

At that point, I had to look beyond Bulgaria to access the treatment I needed. From 2014 until my lung transplant in 2016, I received the intravenous therapy I needed in Greece. This treatment helped keep me alive and stable while I was waiting for my transplant.

I was fortunate because, at that time, the leadership of the Bulgarian Executive Agency for Transplantation had an agreement with AKH Vienna. I was the first patient to receive full funding from the Bulgarian Ministry of Healthcare for my life-saving transplant operation, and I waited in Bulgaria for the donor situation. Before me, there were two patients who were waiting for their operations in Austria.

Did your transplant journey change because of COVID-19 or another healthcare crisis? If so, how did you navigate those challenges?

The COVID-19 pandemic was one of the most difficult periods of my life. During the pandemic, I lost the person I loved — the person who was closest to me, my other half, and the person who had always protected me and done everything possible to keep me from becoming infected. Tragically, this time I could not do the same for him. I fought for his life, but I could not save the person I loved. At the same time, I was fighting another battle — for the protection of transplant patients in Bulgaria. I advocated for lung transplant recipients to be among the first groups to receive the COVID-19 vaccine, because for us, infection was not simply a risk; it could be life-threatening. Despite the fear, restrictions and uncertainty, I was determined not to miss a single follow-up appointment at the Vienna transplant centre. I travelled at a time when borders and international travel were extremely difficult. I passed through almost empty airports and saw cities that had suddenly become silent and deserted. It was surreal. But my medical follow-up could not stop. Those journeys to Vienna were not simply medical appointments. They were a reminder that, after a transplant, life requires constant care and vigilance. Even during a global health crisis, transplant patients must continue to have access to specialised follow-up care. I was fortunate that, despite the unprecedented circumstances, I did not miss a single follow-up appointment in Vienna. It gave me a sense of security at a time when almost everything else in the world felt uncertain.COVID-19 taught me that healthcare systems must be prepared not only for pandemics, but also to protect continuity of care for people living with complex and life-threatening conditions. For transplant recipients, there cannot simply be a pause in treatment and monitoring.

What do you think healthcare professionals and policymakers could learn from your experience?

My experience has taught me that access to the right treatment at the right time can be a matter of life and death. For patients with rare and life-threatening diseases, healthcare systems must be flexible, connected and willing to look beyond national borders when the necessary expertise or treatment is not available at home. The EU Directive on cross-border healthcare is extremely important because it can give patients access to specialised treatment in countries where established programmes and expertise exist — including highly complex procedures such as lung transplantation. For patients, this is not simply about choosing where they would like to be treated. It can literally mean having a chance to survive. For Bulgaria, it is particularly important to rebuild trust and once again become an active associate member of Eurotransplant and participate effectively in European organ-sharing and transplantation networks. Bulgarian patients should not have to become healthcare migrants, desperately searching on their own for a hospital or a doctor abroad when their lives depend on access to specialised transplantation programmes. European cooperation in organ donation and transplantation must be based on solidarity, trust and responsibility. Patients should have a clear and reliable pathway to appropriate European transplantation centres when this treatment is not available in their own country. My experience also showed me how much patients and their families are forced to do themselves when the system does not provide a functioning pathway. I was fortunate to find solutions, but patients should not have to become experts in international healthcare, negotiate between institutions or search abroad for a centre willing to save their lives. And no patient should be left in a position where, as a last resort, they have to find their own contacts with clinics in the United States simply because there is no functioning European pathway available to them. Healthcare professionals and policymakers should remember that behind every waiting-list number is a human being — someone who wants to live, work, love, contribute to society and simply have the chance to wake up tomorrow. My story is ultimately about what happens when different healthcare systems work together — and what happens when they do not. Cross-border cooperation should not be an emergency escape route for patients. It should be a functioning part of European healthcare, especially for people whose lives depend on access to highly specialised care.

What message would you like to share with others facing a similar journey?

Ιf my story can make even one person stop and think about organ donation, say their own “yes”, and understand that after one person’s tragedy, another life can continue, then everything I have been through carries an additional meaning. Because sometimes the greatest gift we can leave behind is the possibility for someone else to continue being here. I have a dream. I want to feel confident that I can also rely on Bulgarian physicians if an emergency ever arises and an urgent solution is needed — rather than always having to keep a backup plan, Vienna, just in case I need to save my life again.