Just diagnosed. What to expect?
Hello to all of you. Welcome to our Patients Empowering Patients (PEP Talks) program. My name is Değer Kesimoğlu and I am 71 years old.
I am a member of the Pulmonary Hypertension Scleroderma Patients’ Association (PAHSSc) in Turkey. As an association, we are members of The Alliance for Pulmonary Hypertension Organization and I am a volunteer for this organisation.
Today I wish to share information about how I felt and what I experienced when I was diagnosed in 2018 with Idiopathic Pulmonary Arterial Hypertension. The cause for my type of Pulmonary Hypertension is unknown. I also learned that my diagnosis, made just after three months, was very quick. Sometimes it takes up to three years for patients to be diagnosed.
What were my symptoms?
• Shortness of breath
• Inability to walk long distances
• Chest pain
• Fainting/dizziness
I have been quite healthy and active throughout my life. Unfortunately, for about three months, I experienced severe shortness of breath and suffered from chest pain if I tried to hurry to catch a bus. I found it difficult to climb even a moderate slope. More alarmingly, I lost consciousness one day, fell to the floor, and ended up with a large bump on my head. At the doctor’s office, we learned that all these symptoms were initial signs of the illness. We were told we had done very well rushing to a doctor who worked in an interdisciplinary center.
Did I know what pulmonary hypertension meant?
When the doctors explained the illness was not in the heart, we were startled. Until then, for any person on the street, “hypertension” meant pressure in the cardiovascular system. What I had was different. Mine was a serious disease affecting the lungs. But also eventually affecting the heart. It was a chronic disease! That is to say, it required ongoing medical attention and could not be cured. I did not accept the idea that it could not be cured. I totally rejected this notion. What I knew was that I had to follow my treatment very diligently.
Why me!
When I first heard the term “pulmonary hypertension,” I could barely pronounce it. Being a logical person, I could not deny the fact that I was ill. It was pointless feeling sorry for myself. I had to come to terms with my disease. I was courageous enough to tackle almost anything in life. One should not be discouraged. It is a fact of life you must accept and take action on. With the help of my husband, who accompanied me to all my doctor visits and hospital appointments, we started a new life. I decided to be kind to myself. The illness was not my fault. I was determined to enjoy life. Thank God I had a son with a wonderful wife and two daughters. Otherwise, it would not be safe to have children.
The disease is invisible! How do I explain it to other family members and friends?
I had started a “mystery tour” with pulmonary hypertension. Nothing was visible. Both my feet and arms were intact. I could see clearly. So, almost nobody believed I was ill. The only evidence was my climbing stairs slowly or not keeping pace with friends when walking on the street. Explaining my condition was indeed difficult since it looked like a mysterious disease with no cure. It was not easy to explain a rare and serious condition. I knew I was rare, but others did not. I told them the illness was in the lungs. It was not visible apart from a few signs like not being able to run or climb to high altitudes.
Patient associations, are they useful?
Not knowing anything about the illness, I tried to consult Dr. Google, which was a partial mistake. The information you find can be either correct or misleading. The Pulmonary Hypertension Patients’ Association (PHA US) I joined provided me with accurate and updated information. Additionally, I was able to attend their testimonial sessions on Zoom. What’s more, the “Phriends” I made were just incredible. We share the same motivation and understand how other patients feel. When there’s a new development, we inform each other.
I cannot say I am lucky to have pulmonary hypertension, but I consider myself exceptionally fortunate to have met my new circle of friends. So I would suggest you become a member of an association. Using it as a springboard, you can discover how to follow awareness activities of other associations around the world.
How my life changed!
Having acknowledged my invisible illness, I accepted that I had to adjust to my new pace. My speed improved slightly after starting medication. Instead of jumping up and down in the gym, I walk in the open air. I avoid climbing hills. Where I live, I have to climb five floors, which I tackle very slowly. I stop to catch my breath after each flight of stairs. As for exercise, my watch is doing wonders. Even when I am at home, I am determined to fulfill my daily exercise routine by completing the rings on my watch.
Following the COVID-19 period, I began leading a more sedentary life. Each person’s body is different. For my part, I choose to do what I can when I feel energetic enough. I focus on what I can do, rather than what I cannot do. I listen to my body. It guides me through what I can do in life.
My pill-boxes and treatment
Once a month, usually on the weekend, I prepare four boxes of medicine, one for each week. This allows me to determine how much I have left before getting a new prescription. My boxes are the most precious objects at home, the first to be saved in case of an emergency.
Che sera sera? Does anybody know what will happen in the future?
Books say pulmonary hypertension is a progressive disease, and that the average life expectancy is limited. On the other hand, every new treatment adds another decade to our lives. We never know what will happen. What I know is that I am determined to be a courageous advocate for other patients.
Take home message
I am totally optimistic about the future. With all the new medications becoming available, I am confident there will be positive outcomes. So why not join me! Be productive. With our hopeful frame of mind, we will make the sunshine last for a very long time.