When I was 13, we discovered by chance that I was born with a heart defect called Hypertrophic Cardiomyopathy (HCM). Because I, like my mother, suffered from headaches, heart palpitations, dizziness and fatigue, we had a genetic test, which showed that we both have the most aggressive form of this disease.
It is a genetic disease in which the heart muscle is thickened, so that the blood flow is obstructed. See also HCM clinical picture.
And it happened to me without me being able to do anything about it. As result, I have not always been able to live a carefree life, but I did do the things I wanted to do: I was able to study and I had a good job in the Government. My husband and I decided that it was better not to have children. Not only because a pregnancy could make my condition worse, but also because a child has a 50% chance of getting the same genetic heart disease.
The source of inspiration
to get the most out of my life
But then I got pregnant in 2001. Just like that, despite taking the pill. And to my surprise, I was so happy about it. It felt so incredibly good that an abortion was out of question for me. My husband and I both had the very strong feeling that this happened as it should have been, that our child simply had to come. We named him Anouar, which is Arabic for “light” in the plural, and that’s how it feels. Before he came, I knew I would not grow old, but now that he is here, I cannot let it go. He is the source of inspiration to get the most out of my life, no matter how small and insignificant it may seem.
After giving birth, I couldn’t do anything; my parents came by every day to wash and dress me. My husband worked 4 days and Anouar spent 3 days with my parents. In the beginning, I also passed out very often, even when I was busy with my baby. Very scary. In 2004, my health was so bad and unstable that the Cardiologists in the Netherlands suggested screening for the waiting list of a donor heart. On the advice of one of them, I went to the Mayo Clinic in Rochester for a second opinion. There they recommended implanting an ICD pacemaker in combination with medications.
In April 2005, I received my first ICD pacemaker at the hospital in Amsterdam and carefully started with the combination of beta-blockers, calcium antagonist, sprironolactone, diuretics, ACE inhibitor and blood thinners. And it started to pay off: I got more energy, and even though I could no longer work for the Police, I found my destiny in writing. In 2010, my debut novel “In Alles Eenzaam” (“Lonely in All Things”) was published, followed 2 years later by my autobiography “Openhartig” (“Open hearted”). This book is about my daily life as a heart patient.
Scientific Research has a special place in my "new" heart.
That's why I am so happy that we have established this Foundation.
My lifestyle changed
Despite the drastic change of my lifestyle, I gradually developed arrhythmias again. I was prescribed various pills for that too. However, the atrial fibrillation became more and more persistent and by 2012, it was so bad that even the cardioversions no longer helped. In August 2012, a Hybrid Maze Procedure followed: this is a semi open-heart surgery in which scars are made in both atria of the heart in critical places to suppress atrial fibrillation.
After an intensive rehabilitation process, I slowly started to feel better again. As volunteer in the Amsterdam UMC, I began to accompany and support people in their illness process. In 2013, I joined the “Harteraad” Patient Association as volunteer and in 2014, I became involved as a Patient Representative at the Dose Consortium dedicated to Hypertrophic Cardiomyopathy Research. Unfortunately, the arrhythmias increased dramatically again and several interventions followed. In the end, no treatment was possible and I was screened for the waiting list of a donor heart.
After one year and 9 months, on the evening of saturday 27 October 2018, I received a call that a suitable match had been found. On the night of 28 October 2018, the heart transplant took place. The operation went well but to be honest, a physically and mentally difficult time followed with complications and minor rejections. Nevertheless, my life has changed dramatically as I am no longer a cardiomyopathy patient!
For the rest of my life, I am tied to many pills that are supposed to prevent the rejection of my donor heart, but now I can fully enjoy life again… I take long walks in the forest and enjoy the renewed energy!
My biggest dream was to go back to work, and I succeeded. With a lot of love and passion, I fulfil the function of Healthcare Policy Officer and dedicate myself to quality and the best care for the patient.
Scientific Research has a special place in my “new” heart. That’s why I am so happy that we have set up this Foundation. During the time I was ill, I learned to live with my limitations and to turn them into strengths. Despite the pain, frustrations and powerlessness, I have always embraced my cardiomyopathy with love and compassion.
That’s what I want to say to all cardiomyopathy patients: you have this disease… but that’s not who you are!