We would like to thank our friends and colleagues at the Dutch Pulmonary Hypertension Association for having shared with us the very touching story of Rob van der Aa. Rob is a remarkable individual who, regardless of the physical toll of pulmonary arterial hypertension, strives to contribute meaningfully to society, dedicating himself to both academic pursuits at the university and the creative expression found in his band. This positive energy extends to his relationships, as he cherishes moments spent with his wife, family, and friends. His story serves as a testament to the strength of the human spirit.
Interview with Rob va der Aa
Rob van der Aa, a 39 year old Dutch man, was diagnosed with hereditary pulmonary arterial hypertension (HPAH) at the age of six. He was recently interviewed for the Dutch magazine De Longen by Mediaplanet. This magazine was sent to subscribers along with the national newspaper De Telegraaf.
When did you find out you had pulmonary arterial hypertension (PAH)?
“I was six when I received the diagnosis. Some time before, my mother discovered she had pulmonary arterial hypertension, after struggling for years. Pulmonary arterial hypertension is quite rare, and as a result, it is not always quickly recognized. Yet, a swift diagnosis is crucial for life expectancy and is essential for family, as the disease can be hereditary. After my mother’s diagnosis, our family was immediately tested. My brother and sister did not have the disease, but I did.”
How is it to hear at such a young age that you have a rare and chronic lung disease?
“As a child, you can’t really grasp what that means. I tried once to join a sports activity; I really wanted to play volleyball. But during the warm-up, I fainted due to lack of oxygen. It was a consequence of my illness; physical exertion is very difficult and challenging with pulmonary arterial hypertension. Still, the full impact of my condition didn’t entirely register back then. It only became clear when I was ten, and my mother passed away from her illness. I also struggled a lot with my disease during my adolescence. What does life have to offer me? Can I participate with people my age, and also, can I participate in regular society? Sports were impossible for me, so I turned to music.”
What is the impact of pulmonary arterial hypertension on your life?
“The tricky part is that, from the outside, you can’t tell that I am sick. I don’t use extra oxygen, and look normal and healthy. But something serious is going on. My pulmonary arterial hypertension is progressive, it’s getting worse slowly. I am constantly incredibly tired, no matter what I do. Whether it’s fun or not, I have to make a huge effort to get moving. Literally everything costs loads of energy. That doesn’t make you happy.
People who are 30 years older are more active than I am. That’s challenging. And what’s also difficult is lying in bed all the time; that doesn’t help either. My ‘tank’ is almost always virtually empty. Also, my condition has an impact on my desire to have children. A few years ago, my wife and I started a PGD (preimplantation genetic diagnosis) process. This involves embryonic selection through In Vitro Fertilization (IVF) to determine which embryos carry the hereditary condition. Prevention is better than cure, after all. Unfortunately, this has not led to a pregnancy for us. But for other PAH patients, it may be different.”
How do you cope with your disease?
“I try to stay as positive as possible in life. Regardless of how I feel, I try to contribute and make myself socially useful. To focus on my work at the University, play with my band, and spend time with my wife, family, and friends. I do all of this based on willpower. If I purely listen to my body, I would stop doing anything. In that sense, I constantly demand a lot from myself. But doing nothing doesn’t make me happier either. Furthermore, I live in the present as well as I can, without postponing things. I don’t have a bucket list. I have always lived the way I wanted; I don’t know the feeling of ‘if only’ because I have always realized that life can suddenly be over.”
How do you see the future?
“That’s currently quite difficult. There are more and more off days, and the situation is basically unsustainable. It makes me very unhappy. During my last consultation with my pulmonologist, a lung transplant was discussed. I am certainly open to that. I see it as a chance for a second life, where I can finally go for a run or play sports. That’s currently impossible. If, for example, I can walk or climb a mountaintop later… Yes, that would be fantastic!”
The original language version (in Dutch) of the article can be read by clicking on this link
Photo by Red Morley Hewitt on Unsplash