Published 2019-01-27
Changed 2019-01-28

Six months ago, Kees suddenly felt unwell during his work at a school for children with special needs. “I walked out of the toilet and suddenly felt weak and experienced loss of function. My right arm and right leg were no longer working.” Panic ensued and an ambulance was called. “I said to a colleague: “This is not going to end well!” He thought that I was joking.”

Through the eye of a needle

In the ambulance, my arm and leg slowly started functioning again. “As if I had crept through the eye of a needle. At the hospital they still had no idea what was wrong with me, but everything seemed to be fine again.” Kees was prescribed blood thinners as a precaution. “I was allowed to leave the hospital that same day. I was convinced that everything was fine again. But it wasn’t.”

The first days after the incident all Kees could do was sleep. “I was in very poor physical condition. I still am actually.” Disaster struck again one evening. “I had just eaten a tasty dinner and suddenly fell from my chair. I immediately went to the out-of-hours GP service, where they performed a heart tracing (ECG). Now it was clear: I have atrial fibrillation.” The incident that Kees experienced at work was a TIA (Transient Ischaemic Attack)*.

Symptoms persist

Kees regularly suffers from atrial fibrillation. “I feel it the moment something goes wrong. I cannot do anything and need to be hospitalised every time, because it does not go away on its own.” Occupational therapy, physiotherapy, rehabilitation. Kees has tried all sorts to reduce the symptoms of atrial fibrillation, but this all offered very little or no improvement. “At the moment, I have no energy at all. I reach my limit quite quickly.”

Kees discusses everything with his doctor, but he wants to make his own decisions. “I think that quality of life is the most important. Of course, a doctor cannot offer any guarantees, but I want to know what the risks are and what my odds are.” His daughter Manouk is always there to help him and also goes with him to doctor’s appointments. “I have no trouble standing up for myself. But sometimes you feel so weak; in that case it is good to have someone there to help you and think about the questions that you need to ask your doctor.”

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Poor information from the doctor

Kees says that good information is sometimes lacking and this concerns him. “When I was prescribed blood thinners, I did not receive any further information from the doctor. What should I take into consideration? What do I need to do if I start bleeding? I had no idea.” Kees stopped playing football, but he wants to start again. “You can easily become injured during football, but the use of blood thinners does not pose a problem if I and those around me know exactly what to do during an emergency situation.”

Kees is still sitting at home, waiting for an ablation, a treatment that should reduce the symptoms of atrial fibrillation. “Looking back, I think I might have had atrial fibrillation for eight years. If I drank coffee, I would sweat profusely. I blamed the caffeine. I have also experienced a brief loss of consciousness whilst driving. I blamed it on being busy or stressed.” His GP blamed it on hyperventilation. “Just take it easier”, he would say. I will not let anyone say that to me again!”

If you recognise this story or have questions about atrial fibrillation, please contact your doctor.

“I am worried that he will become injured during football”

Kees’ daughter, Manouk, started caring for her father after his TIA. “Suddenly I was a carer. For half a year I had to do all sorts of things for him every day.” She goes with him to doctor’s visits and realises that very little information is provided about blood thinners. We first had to complain (about side effects), before we were told that there were several options. I find that strange!” As a result, Manouk is not sure what exactly she needs to do in the event of an accident or bleeding. Her father loves to play football and would like to start again once he feels better. “I am worried that he will become injured during football. What effect would that have if you are taking blood thinners?” Manouk would like to see her father playing football again, without having to worry about injuries. “That is why I would like to know about the different types of blood thinners and what we need to do in emergency situations.”

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