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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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Dora Erdelyi - phaware® interview 282

Sep 17, 2019

Hungarian Ex-PH patient, Dora Erdelyi, discusses her double lung transplant and how patients in Budapest grapple with PH.

I am Dora Erdelyi. I came from Budapest, Hungary. I'm an ex-PH patient, a double lung transplant survivor.

It began when I was feeling that I got tired easily. I couldn't go up to the second floor in my apartment. This was unusual for me, because before that I was doing kayaking for years and I was always having sports. I was going up to the sixth, seventh floors without any problem. I was always strong and then I suddenly couldn't lift things, et cetera.

So, I went to see my family doctor and he told me that it's your age and your weight. I said, "I'm 35 and okay, I’m [slightly] overweight, but I don't think that's an explanation, so let's go and see what it is." He sent me to [have] an X-ray. At the X-ray, they asked me that when were you last time you did X-ray, because you should have been invited back. Then they asked me, "Are you being treated for heart disease?" And I was like, "Why, should I be treated?" They told me that my heart was a lot bigger than it should be.

Then I went to see a cardiologist and she did an electrocardiogram. It didn't show anything special and then she did an echo because of the size of my heart. Then, she started suddenly looking up in books like what should I do with you? And I was like, "I'm not going to drop dead here. So, what's the problem? What's the worst case?" Then she said, "Oh, you might have pulmonary hypertension." So, what does that mean, what's the worst case? She said, "lung transplant." I was like, "Yeah, sure, lung transplant. Leave me alone." After that, she sent me to the specialist.

It was on a Wednesday and on a Friday, I was already at the best doctor in Hungary. Then he said, yeah, there is a substantial doubt that I have pulmonary hypertension. He said, "Welcome to the club." Of course, we went through all the examinations. By November I had the diagnosis.

That's about the what you can learn about Hungary, that there are those who are wandering in the system and those who are instantly diagnosed due to some luck that they go to see some cardiologist who already heard about it. So that's why we think that awareness is a really important question in Hungary. I can feel that the doctors are also hungry for information because, for example, if I go to my family doctor [and he is] not there, [the doctor who is replacing] asks for the whole story - how was I diagnosed, what were some of the first symptoms, et cetera. They had to call an ambulance once to my workplace. They asked all sorts of questions as well. So, we know that there is room for improvement regarding the informing the regular doctors about what is PH.

We are very lucky because we have all that is available in Europe. From that point of view, Hungary is very lucky and it's all financed by the government, luckily. There are some individual cases when you have to apply for it every three months, but [patients] get it. So, there is no such problem at the moment that someone needs something desperately and then it's not approved.

We estimate that there are about 500 patients in Hungary. We are a population of nine million people, and 130 is the number of our members. It includes physical therapists, physicians, also, and supporters, but many patients as well. What is very important for us, there are two main events that we are organizing our work around. One is World PH Day, where we have some kind of sport activity. So, we are trying to get normal people to get breathless to experience what we are feeling after five steps or 10 steps. They can feel it after a couple of kilometers' run or something like that.

Then, we have also a patient meeting in every autumn, where we invite government officials to talk about financing, doctors to talk about new therapies and the research possibilities. We talk about rehabilitation, exercises, et cetera. We are always asking our members what are the hot topics and then we are trying to organize the meeting around that and it's works very well. So that's where we meet, because otherwise our patients are in the elderly age groups and they are not so much on Facebook or on social media. So, we are calling them on the phone and this meeting is where we get together and we catch up with each other.

You can see my case that I was diagnosed instantly almost. I didn't have such severe symptoms and I went through all the scale of therapies: the combine, the two combinations, three combinations. I still ended up needing a lung transplant. So, I can understand why it's crucial because I was on the list with urgency at the end. So, the progression of my illness was really bad. This can happen to other patients as well. Just imagine if they were not diagnosed instantly, they might end up not getting the chance of some new lungs and a chance for a new life like I did.

I'm Dora Erdelyi, and I'm aware that I'm rare.

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