My name is Eszter Csabuda, I am Economist, 67 years old, I live in Hungary
For years I have felt exhausted, I was breathless, could not climb montains or run, like I could before. I was diagnosed after going from doctor to doctor for ten years, when I could hardly walk, because my feet were swollen and could even hardly talk because I had no strength. I was admitted to hospital, but in 2006, at the age of 53, they were not giving me encouraging news. At the examinations done at the ICU no medication seemed to be effective. Lung transplantation option was mentioned, but there was a very expensive drug, that I could only receive with an individual permission. They started to use it in the hospital and it seemed to be working. It took a full year to recover, until I could work again.
After that I was walking a lot, I have returned to work. After a year the permission of the drug was revoked. As a result, all PH patients, we were 15 at that time in Hungary, could not receive the drug, because it was expensive. That is when we decided to establish the association, to fight for our life. That is when I became the Chairwoman of Tüdőér Egylet (the Hungarian PH association) in 2008.
Lots of people assisted in setting up the association and access to drugs, first of all our doctor, but lawyers were involved, we contacted the media and a little more than a year lated we received the medication and the appropriate treatment. As a result of our work, more and more people were diagnosed with PH and they have joined the association. Advocacy, personal meetings and exchanges of experiences are important for us.
The support received from PH Europe gave us momentum, we have learned a lot and forwarded this knowledge to our fellow patients. Currently we have 130 members, but it is like a small family, we love and support each other. Now we live hard times because of COVID-19, but we pay attention to each other. We keep the contact by phone, via email and we give strength and consolation.
The lot of stress and intensive work, getting up early and going to bed late was not good, my status started to deteriorate. I decided to quit working and change my lifestyle.
Currently I live in a small village with fresh air, I walk a lot. I have an e-bike, so I can continue my favourite sport. Even though I cannot run, and cannot carry heavy things, it can be arranged. It is important to be out in the open air a lot, my hobby is gardening, it gives me pleasure to see the growing of the plants and of course I can eat healthy vegetables. It gives me pleasure to help my fellow patients, we unite those suffering from PH and we contribute to the early diagnosis of new patients by our awareness raising activity.
I think it is important to stay positive and to always feel that we are needed and it is indeed so! We will survive COVID-19 also! We have to 😊
I wish lots of success, happiness and laughter to everyone!