Florin Dumitrescu - phaware® interview 571

He Sent 100 Emails to Save His Wife… Only 3 Doctors Answered

From a devastating diagnosis to a lung transplant that changed everything, Florin Dumitrescu shares how mindset, persistence, and community carried his family through their darkest moment and how survival transformed into advocacy for pulmonary hypertension patients across Europe. #WorldPHDay2026

My name is Florin Dumitrescu, I'm 56. I'm from Romania, currently living in Austria, in Vienna. We are a family that entered the pulmonary hypertension influence four years ago when my wife got this diagnosis. Unfortunately, in Romania without any hope, because at that moment when the doctors said, "This is bad news. You have pulmonary hypertension. There is no cure for the pulmonary hypertension, but your disease condition is so tough that your life expectancy is six to nine months." We were told at that moment that, "You have to find solutions anywhere else, but not in Romania." We decided and we tried to understand what's going on and what would be the best path to follow. We both said we have to find a solution.

I wrote an email. I put all the information in it. I wrote it from my heart. I searched the internet for all the people, key speakers in the conferences related to PH all over the world. I sent more than 100 emails, waiting for the answers. I got only three answers. One was from Canada. One was from Germany. The third one came from Professor Irena Lang, who's the head of the department in AKH, the public hospital in Vienna. The doctor said, "You have six to nine months." The answers from Canada and from Germany were like appointments in six months. That was too late. But we were very lucky that Professor Lang here in Vienna said, "I'm waiting for you in 10 days. I have COVID now, so the earliest moment I can see you is in 10 days."

We packed, traveled to Austria, met her in a private institution. She said, "You have an appointment at 6:00 PM. Let's wait till 9:00 when the last appointment ends and we can sit together. We have the night in front of us to see what this is all about and what are the best ideas and the best strategy to deal with." We waited. We spent almost more than half of the night because it was after 2:00 AM when we left the office. She called one of her colleagues in Japan. They did an assessment at that moment and she started to build a strategy. She said, "There is no cure. We can try something to see whether it fits or not with your condition, but I think that a lung transplant will be the only solution for you. "

We went back to Romania. We shared nothing with our family because we have a daughter, she was 12 at that moment. We wanted to keep her safe and sound, and sane, because she's a very fragile and very sensitive girl and we wanted to keep her safe. We started our journey with monthly visits to Austria where the doctors took care of Nicoleta, my wife. They've recorded all her parameters, seeing that all were going down or degrading.

One year later, in 2023, they said somewhere in the summer, "You have three months to move to Austria because the transplant is imminent. We have to be prepared in the next three months for this." They were able to extend survival almost a year, but what we had to do was the lung transplant. We packed everything. That was the moment when we told our daughter that we have to move to Vienna, to Austria. She froze, having no idea about what was going to happen with her life. But I think someone up there was not very busy at that moment and took care of everything. Like magic, we found an apartment. In Vienna, it's quite difficult to find an apartment, especially when you're a first timer. If you've been living here in Vienna, you have the credentials for a landlord to give you an apartment. Otherwise, it's quite impossible.

I don't know how and why they trusted us. Probably because we had good jobs in Romania. We said we would keep our employment in Romania. My wife, she's a lawyer. I was a senior manager in a large international corporation. So, we got an apartment. After that, we needed a school for our daughter. We found a place we had been accepted in a private school. The apartment was 600 meters away from the hospital. In a week, we packed everything, rented a truck and moved to Vienna. Long story short, this is our journey.

In December, Nicoleta got the new pair of lungs, and with those lungs a new life. Now, we have, let's say, a normal life under the conditions after lung transplant with the immunosuppressors. But otherwise she's working as a lawyer, she started exercising. We enjoy life together.

No hospitals in Romania have a transplant protocol implemented. They don't have the knowledge how to take care of somebody who went through a transplant. It's something very special. Once you are a transplanted person, you don't have an immune system. You are completely immunosuppressed. Therefore, any infection, any disease, it's life-threatening. So, here in Vienna, they have a dedicated line, when you call for emergency for the ambulance, for instance, and you say, "I've been through a transplant, I'm a transplanted person." They send a dedicated team of paramedics. They know the procedures, how to handle somebody who went through a transplant. We decided that in order to have our family safe, leaving in Romania for good was the best for us.

When we got the PH diagnosed, this had a tremendous effect, not only on us as adults, but also on our daughter. She had to deal with this tough information, because she was not aware of it, of the severity of the illness. She had to find her own resources to process this information. She also got the support of her colleagues, of her teachers, of a very special doctor she met, a psychologist who taught her how to deal with such a big issue in life. It was very tough for her. They are quite straightforward. They said, "This is going to be a lung transplant. Nobody can guarantee that it's going to be 100% safe. Anything may happen. It's a major intervention, it's not like appendicitis or something like this." We were also very lucky that in the school where she is, they made a team of professors and children to take care of her. She was surrounded by a group of friends and teachers who went through this, and it was very, very, very special for her because she felt that she's not alone in this. But it was very tough.

Being EU citizens, we are not required for any kind of work permit or anything else, but it was right after COVID. All the health system in Austria were under special supervision, so no foreigners were allowed to benefit of the services in the public hospitals. Therefore, we needed to became Australian residents. For us in EU, it's not complicated, because you have the right to work, to relocate your family here. You only have to be registered as self-employed. She's a lawyer, so it was quite easy for her, she had to go through the relocation process in the bar, but it's not complicated as long as, as I said. For me, it was a little bit tougher, because I was working as an employee, but right here, right now, I'm working as a consultant. I'm self-employed, a little bit harder being in a different market, but we can manage it.

The most important thing is that we are a family, we are still a family, we are all of us. We can enjoy living together. We built a connection with the Austrian branch of PHAEurope. We were enrolled in the Austrian system, the people from PHAEurope and PH Austria contacted us and said, "We have this association here in Austria. We are taking care of the patients in need. If there is anything else we may do to help, just let us know."

We decided when we went through this process, that our knowledge that we gathered these years would be important or very useful for people in need in Romania. We decided to help anybody, any person who might need help. The idea of going in the Romanian Association and helping the Romanian Association came when they started to prepare the first patient doctor's meeting in Romania. I went there, I met the guys in the Romanian Association, and that's how I started working for both of them, bringing my knowledge as a former manager and these two years, making things happen also in Romania for the Romanian patients.

My wife, she's a very, very resilient, very tough person. She never considered failure as an option in anything she does. When she got the diagnosis, she said it from the beginning, "We have to find a solution, there is no other option." I have the same mindset, I think that's why we have such a great relationship and a great family, I may say.

Everything that came... When she entered into the OR in the hospital in December 2023. She was laughing with the doctors when she entered in the operating room. She made jokes with them and she laughed. After the operation, eight hours later when the doctors went out, they said, "We have never seen a patient laughing and enjoying the moments, because she knew that after the surgery, she will be a new person. Usually patients are afraid, they're anxious, we have to calm them down, but this was not the case." She had a quite tough recovery. She's been for 24 days in the coma, because her recovery after the surgery was quite tough. After that, she started building her strength again every day, every day. She went through a three weeks recovery process somewhere in the mountains with physical activities, with mental preparation, with medication management and so on. When she came back, she said, "I have to go back to the physical status and the mental status I was at before." And she achieved it.

One year later after the surgery, she started running, she started doing her daily routine in exercises, physical exercises. But everything comes from the mindset. If you have the right mindset, you can go through easily. The most important thing for people in this situation or with these kind of issues, your status, your mental status is very important. This is something that everybody's supposed to know and everybody's supposed to try to achieve it. Be prepared and be sure that the stars will be aligned for you.

My name is Florin Dumitrescu and I'm aware that I'm rare.

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