Pulmonary arterial hypertension is a rare disease that can affect anyone at any age and is not yet curable. Eva Otter has been living with Pulmonary arterial hypertension for twenty years. Many recognize Mrs. Otter as the trusted "face" of this disease through her years of intense patient advocacy with the non-profit PH Austria and PHA Europe organizations. We had a chance to speak with Eva Otter about her personal experience and her hopes for the future. Our conversation has been translated from German.
Living with PAH
"I was diagnosed with Pulmonary arterial hypertension in 2003. At the time, I was an extremely busy medical laboratory manager in Lower Austria, also assisting my boss with conferences, publications - you name it. After I had been feeling unwell for some time and not improving, despite following my doctors' advice - exercising more, losing weight, working less, making lifestyle changes - I simply did not have the time or energy to investigate my condition further. Finally, my physician told me that if I put off the diagnostic tests any longer, it would be "too late". This shocked me into taking action to find out what was happening to me and to get a medical diagnosis.”
What was it like to be diagnosed with Pulmonary arterial hypertension?
"I felt the ground being pulled out from under my feet. In that moment you no longer know what your life will look like, and you lose your self-confidence. What saved me was being put in touch with the right doctors and our patient support group. This helped me find access to homecare, mental-health care, and, most importantly, the connection to other patients."
We know that when we take control of our health, it gives us the best possible chance of improving our quality of life. Because we know our own bodies better than anyone else.
photo credit: Ludwig Schedl, APA OTS
For me, the most important message is: Never give up! You are the same person with PAH as you were before you became sick.
The past years have given us all a clear understanding that, while the world has changed, when we work together, we can get through even the toughest of times.
How do your symptoms affect your quality of life?
"I often experience dizziness and pressure in my chest. I'm exhausted, and my muscles hurt. And most of all, shortness of breath. It's hard to breathe. There are days that are not my best days, so I'm not able to go out. It's not possible anymore to climb a hill or even stairs. It's been a terrifying but also terrific journey to find happiness again and peace with my situation. For this, a holistic approach was needed."
How did you manage your anxiety?
“Around the time I was diagnosed, I couldn't imagine what it would mean for my life, what would happen. One of the hardest things for me was to stop working. But the biggest challenge for me is to admit to myself that I'm sick and that I cannot do everything I used to do. It helps a lot to meet like-minded persons to cope better with the disease, as we can do in our association. It shouldn’t be a taboo to take care of one’s mental health and get help from a psychologist.”
How do you live with the disease?
“The perception of the disease is different from patient to patient. Sometimes you can see the desperation in the patient’s eyes. What is important for me, is to not need much help from others for as long as possible. And to be informed about new innovative treatments is very important for all of us.
Another part is to fight against isolation. My family is always around when I need help, they understand my situation. For me, the most important message is: Never give up! You are the same person with PAH as the person you were before you became sick. You are still “you”.”
How can someone with a PAH diagnosis find quality of life?
"I have learned that taking control of one's health gives us the best possible chance for improving our quality of life. Because at the end of the day we know our own bodies better than anyone else. To achieve this, we need support and trusted tools for coping with the disease. I believe the best way to do this is to become part of a support group. In my case, this is PH Austria. I know that I could not live like I do today without medical treatment and PH Austria, which is why I am so motivated to get others to join a support group and help them with access to quality medical care."
How has your quality of life changed you?
"The PAH diagnosis was the beginning of a journey that has led me to accepting my disease and to finding the silver lining in my life that took a completely different direction than the one that I had planned. Step by step, I’ve learned to cope with this disease and to pursue a different, fulfilling existence helping other patients.
I now finally feel free again to set new goals for myself: I would love to see a Lady Gaga concert with my grandson. I can't wait to do that."
Besides your personal goals, which goals do you intend to pursue within PHA Europe?
"As acting President of PHA Europe, I´m in a position to "move the needle" for PAH patients; pursue funding medical treatment and devices in under-represented parts of Europe, improve access to homecare and psycho-social support, and offer an international stage for addressing the challenges that PAH patients all over Europe, face."