About the video
Emine shares her story of living with Eisenmenger syndrome and pulmonary hypertension, from childhood in a small Turkish village to returning to education and building a career. She reflects on how treatment and encouragement from her healthcare team helped her pursue the opportunities she had once thought were out of reach.
In this PEP Talk, Emine also speaks about losing her parents, undergoing two brain operations and learning to walk again. She describes the role of faith and support from those around her as she continues her recovery.
Through her “Patient Stories” programme, Emine has helped other people living with pulmonary hypertension share their experiences, understand their condition and feel less alone. Her story highlights the value of connecting with others and supporting patients to find their own way forward.
Transcript
Hello everyone. Welcome to a new episode of “Patients Empowering Patients – PEP Talks”. Within the scope of this programme, I want to tell you my own story, my struggle with my illness, how I coped with what I went through, and the work I do for other patients.
My name is Emine Çayıroğlu. I am 47 years old. I have Eisenmenger syndrome, pulmonary hypertension due to a hole in the heart. I have been receiving treatment for this illness for about 20 years.
The hole in my heart was noticed when I was a six-month-old baby. But at the time, no treatment was given. The illness first showed itself in fifth grade of elementary school. On my way to school, which I walked to and from, I started needing to rest from time to time.
I studied at a small village school. At that time, we lived in a village where there were no motor vehicles going to the city. That is why my treatment was delayed and, unfortunately, it caused pulmonary hypertension. When I started sixth grade, going to and from school became even more difficult for me.
As the illness progressed, in 1993 I went to a university hospital in our capital, Ankara, and my first diagnosis was made there. Because my lung pressure was high, the hole in the heart could not be closed with surgery. At the time, there was no treatment for pulmonary hypertension in Turkey either, so I returned to my daily life.
I completed my eight-year education under difficult conditions. But following that, both because I lived in a small village and because of my health problems, I could not continue my education. My education ended there, but I made a promise to myself: one day, I would definitely complete my education.
I saw city life for the first time when I went to Ankara for treatment. At the time, I realised that city life would make my life easier. For this reason, I would sometimes go and stay with my brother and sister who lived in Istanbul.
With my younger brother also moving to Istanbul, I applied to a training and research hospital in Istanbul to learn about my condition and with the hope of a new treatment. It was said that a new drug treatment was being carried out for me and for patients like me. I was the third patient in that hospital to receive this treatment.
Thanks to staying in Istanbul during the treatment process, I met different people. I got close to other patients. I became a member of an association established for this disease. It taught me a lot and added a lot to my life.
Most of the patients were very young. The number of patients was increasing rapidly. Our doctors and our clinic nurse would tell us that we should not turn our backs on life and that we should continue our education and enter working life. They would always say that we should never limit ourselves. It was as if we were going to the hospital not for treatment, but for an outing.
After starting treatment, upon the suggestion of our clinic nurse, I kept the promise I made to myself and enrolled in high school to continue my unfinished education. Going to the hospital had become like going to school for me. Because having a treatment made me so happy, I held on to it with all my strength.
While continuing my education, I was also managing my own health. I was learning something new about the illness every day. I followed everything about how I should proceed, what I should pay attention to, and how I should take my medications. In this process, I learned to take control of my own life.
At age 32, after finishing high school, I entered working life. I also made progress in my work life and got promoted to different positions in the company where I worked. While my work life continued, I was also attending university. But the working conditions and workload of the private sector were far above my strength.
In order to have a job where I could work without risking my health, I took exams to work in the public sector. At age 35, I was appointed as a civil servant in a different city following one of those exams. My life became easier in terms of work. Now I was both a civil servant and a university graduate.
The treatment we receive with drugs for pulmonary hypertension helps us to a certain extent. But it cannot fully protect us from some risks. For example, in the second year of my civil service, a clot went to three capillaries going to my brain and I had temporary paralysis.
Later, I requested a transfer to my hometown. Because life was not only about me! My mother and father were living with me. My mother had moderate hydrocephalus and could not walk. My father was looking after my mother.
My sister and younger sister lived in Ordu, our hometown. Thinking that they would support us, I wanted to be close to them. During the period when I was trying to get a transfer to my hometown, I lost my mother, who had been in intensive care for three months. My father and I were left alone.
After my mother’s death, my father and I were living in our hometown. In the seventh year after I came to my hometown, on the evening of September 1, 2025, I took my father to the doctor because of a lung infection, pneumonia. When I returned home and was talking to my sister on the phone, an involuntary movement that I could not control happened in my left hand.
First, we went to the emergency department in our district, and the doctors said there was a tumour in the brain. On the fifth day after my first seizure, I was admitted to the hospital. In the hospital where I was admitted, it was said that it was not a tumour in the brain but an abscess.
On September 11, my first brain surgery was done because of the abscess. Three days later, I also had a second brain surgery due to a brain haemorrhage.
On the 16th day of my hospital stay, my father was also admitted to the same hospital, one floor below, for treatment for a lung infection, pneumonia. But it was forbidden for us to see each other. My brother and sister secretly brought us together in the corridor away from the doctors.
After my second surgery, my father passed away. My left side was now completely non-functional, and I was bedridden. I lost my father, I lost the strength to stand on my feet, but this could not stop me. My father would not want me to give up either.
I am a person who believes in myself and in the Yaradan, the Creator who gave me this life. I struggled hard to survive, to walk and to return to my old life. I did not do this alone. The efforts and contributions of my family, my friends and my doctors were very big.
And now I am walking. I am still fighting to get better, and I am receiving physical therapy. Until today, I have never given up on fighting and struggling. From now on, too, so that I do not give up, I pray to the Yaradan to give me the same strength.
To hold on to life, I tell myself how beautiful life is. I think about the people who love me being around me and that I should not upset them. I am someone who does not know what giving up is, and who is not afraid to fight to make my life easier and better.
I believe this: if I want, the Yaradan will give it to me. If I fight, the Yaradan will make my work easier.
A few years ago, through the social media account of the Pulmonary Hypertension and Scleroderma Patient Association, I did a programme called “Patient Stories” about how patients struggle with this illness. We both brought our doctors together with patients and did broadcasts where other patients told their own stories.
The purpose of this programme was to help patients feel that they were not alone. We thought that listening to people who experienced similar difficulties would do good to other patients. We took care to discuss illnesses in a language that everyone could understand, away from medical terms, because we were not doctors.
By telling how we encountered the illness, how we got the first diagnosis and what path we should follow afterwards, we tried to guide new patients. Without giving up, we shared with each other how we could continue our lives more easily.
In this programme, patients told their own stories. Not everyone had the courage to tell their own story, so I would ask patients I knew and talked to to join my programme. I chose some from association members and some from those who messaged me wanting to tell their own story.
In the “Patient Stories” programme, we especially tried to draw attention to organ donation. At the end of the programme, we had a slogan: “Do one last good deed before you die, let your organs be life, not soil.”
The programme was done as a live broadcast, and the live broadcast videos were shared on the association’s social media accounts. I was getting positive feedback through my personal social media account from patients and patients’ relatives who watched these videos.
Many patients in Turkey know me from this “Patient Stories” programme and still watch those live broadcast videos and message me through my social media account. They told me that they learned about their illnesses from the programme videos and that, thanks to these videos, they felt better and not alone.
Sometimes what we go through becomes an inspiration to others and helps them feel that they are not alone. That is why I wanted to share my own story with you here.
Thank you for listening to my story within the scope of Alliance for PAH.