Life doesn’t stop with a heart condition; quite the opposite.Stéphanie Lemmens
Stéphanie (34) was fourteen when her left hand suddenly turned blue during a meal. A major alarm bell that was finally given a name at the hospital: hypertrophic cardiomyopathy. This hereditary heart condition is characterised by an abnormal thickening of the heart muscle. That diagnosis put many puzzle pieces together. For instance, whenever Stéphanie exercised, she quickly became short of breath and pale, experienced dizziness, and sometimes even had blue lips. It was something she had never really paid much attention to until the day her hand changed colour.
Life-saving defibrillator
Finding the right medication was a journey of trial and error. Several drugs didn’t work as intended and made Stéphanie extremely tired and sometimes ill. On her thirtieth birthday, a second alarm bell sounded: Stéphanie suffered a stroke. Her heart condition worsened, leading to the implantation of a cardioverter defibrillator (ICD). "That device was meant to prevent my heart from stopping by delivering an electric shock if needed. It was supposed to save my life. About a year after the implantation, things nearly went wrong when the lead broke, and I received twelve incorrect shocks in a row. At first, I tried to stay calm, as I had been taught, but it was an incredibly intense experience."
Not just 'tired'
During a second heart operation, Stéphanie’s defibrillator was fitted with a new lead. Four years on, Stéphanie now manages two clothing stores and practices fitness and yoga. "You really need to shift your mindset. I do everything anyone else does, but my body needs more rest. I can’t keep going like an express train. That’s sometimes hard for others to understand or accommodate. ‘Being tired’ sounds so trivial because everyone feels tired from time to time."
What she wants to share with others in the same situation is that life doesn’t stop with a heart condition. "There were moments when I was very scared, but I try to trust the device and embrace it. I see it as something positive because it has changed my outlook on life for the better. Precisely because my life is more fragile, I’m open to everything and more likely to seize opportunities to make the most of life. I still want to travel a lot. The fact that I can’t go through the metal detector with my ICD and always get briefly pulled aside as a ‘rarity’ is the least of my worries." (laughs)