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I'm Aware That I'm Rare: the phaware® podcast

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday!

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Natalia Maeva - phaware® interview 350

Nov 24, 2020

Bulgarian pulmonary hypertension patient Natalia Maeva is a founding member and current President of the Bulgarian Society of the patients with pulmonary hypertension.

In this episode, Natalia discusses her journey with PH migrating to Greece for treatment and to Austria for a double-lung transplant, her passion for PH awareness and being a positive voice for the Bulgarian PH community.

My name is Natalia Maeve. I live in Sofia, Bulgaria. Right now, I am a part of the PHA Europe Board, and I am the current president of the Bulgarian Society of Patients with PH.

My connection to PH was when I got diagnosed in the year 2009. In the year of 2016, I went through a lung transplant in Austria. On the year of 2007, I started feeling very nauseous, very overly tired. I fainted, collapsed. It was very scary for a young woman. So I went to get diagnosed. Until the year of 2009, I was getting through diagnostics. In the year of 2009, they diagnosed me with PH. I was treated with Revatio until the year 2011, which I paid from my own money. The country didn't support any kind of money and payments through this treatment. In the year of 2014, I started treatment with Remodulin (treprostinil), and I got it from Greece because they didn't have it in Bulgaria. In the year of 2015, the government, they didn't want to pay for my transplant, because that's when they realized that the treatment that I got didn't work in any means, and I had to get a lung transplant.

Currently in Bulgaria, there are two offices of PH, one in Sophia, one in Varna. The crew is very small. It's built mainly with doctors that do it to help on their spare time. Right now, there are a lot of problems with the oxygen concentrators in Bulgaria. They don't provide it to patients at all. That's what we do in charity companies to try and help PH patients around Bulgaria to get the treatment that they need, because the government doesn't help at all.

Right now in Bulgaria, there are 150 active patients with PH. We are around 7 million in this country, so 7 million citizens. But mostly the problem is because the treatment isn't right in Bulgaria, a lot of the patients, their last option is to immigrate to a different country that they could get treated from. But the problem is that it's not easy at all. First of all, you're very sick. Moving to a different country is nearly impossible physically, mentally. You have to take your family with you, because you can't cope with everything by yourself. Financially-wise, it's very hard as well, because the treatments are very expensive, and the living expenses. When you don't get any support from the country, it's very hard. That's why the Bulgarian Society, that's how we help the other patients with charity, with funds, as much as we can help them.

I went to get secondary help from a doctor in London in 2010. He was a Greek doctor. Then he sent me to Greece to get treated. And again, that wasn't paid for. I didn't get any help from the country. The reason that the country didn't fund or help me and other patients, especially in the early 2000s is because it's such a rare disease.

When I went to Greece to get treated, after I got sent from the Greek doctor in London, they had decided that that's the treatment that I need to get. I needed a lung transplant, because after getting the treatment that I got in Bulgaria and in Greece, nothing worked, and that was the last option. I was diagnosed with the PH in Bulgaria, started getting treatments here, moved to Greece, got treated there. They realized that it wasn't working. Then it was decided that I need to get a lung transplant.

It was 11 months. For me, it felt very, very long. I just wanted to get my new lungs and start my new life. So it was a very hard waiting process for me. I was connected to an oxygen concentrator. So it wasn't that pleasant of course, but I was pretty lucky. Let's say that.

I'm a very activist person. I really like to share my opinions and I always fight for my rights. If I went through such a horrible thing and such a long process that was funded by myself, I think that my role I need to give for myself, and I want the country to hear my voice. PH patients need to know that they have somewhere to go to and someone to talk to that can take care of them. When I was sick, it was very hard to me because I didn't have that.

So I want, as a correction for my new life. I got a second chance. I got a new chance in life, to help and progress and raise awareness for this rare disease, especially in a country like Bulgaria. I want to help people. Especially, when this is such a rare and vicious disease, you need all the support you can get, mentally, physically, financially, everything. Bulgaria, I don't know if you're aware, isn't that... How do you say it? Not that great. It's considered one of the poorest countries in Europe. So that's why I said that a lot of patients don't want to face with it here in Bulgaria. So the last option that they have is to immigrate to a different country with better economics, with better healthcare, because here in Bulgaria, it's very, very hard. Plus, lung transplantations aren't available in Bulgaria, sadly.

One of my greatest accomplishments is probably raising the awareness here in Bulgaria for PH, because when I was sick, it was so rare that no one basically in this country really knew what it is except for the people that actually had it. We also made a lot of campaigns here in the country to raise awareness. That's what I feel the most proud of, that people actually know about this disease now. The doctors also have a great knowledge about it.

Always think positively, because when the mind is healthy, when the mind is thinking great things, that I can conquer this and I'm brave, and I have great family and friends around me and people that care about me, I can conquer it all. I can conquer this disease, because at the end of the day, mentally is the most important thing that you can do. Just always think positively, always think that I'm strong and I'm brave, and I can go through this. I know that it's hard and it's very tiring, but I am strong and I can do it. I'm living proof of that.

Of course, even me after getting the lung transplant, I never put myself in negative thoughts, because of course the process after the lung transplant is very important, because you need to feed your body with positive thoughts and great thoughts and keep on a healthy lifestyle of course, to maintain the treatment that you got.

We are really trying and pushing through getting oxygen concentrators in this country. We only have three centers of oxygen concentrators. Of course it's a large country. There are a lot of city, villages. It's not enough. We're trying to push this. We're trying to get the funds for it, because the country really isn't helping us at all with this. So that's the main goal right now. Because the awareness is happening all the time. People know about it. Doctors, of course, know about it. So that's what we're really trying to push right now. And also IV therapy.

For anyone listening to this, it's really important to me to share this message that just be brave, be strong, always think positively. I know that it's hard. I went through it. I got my second chance for a second life. I'm trying to make the best out of it, not only for me, but for other people in general, not just the PH patients. Always think positively. Just know that you can get through it. It's hard, but you're strong enough and capable enough to conquer it all.

My name is Natalia Maeve, and I'm aware that I'm rare.

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