Because of her heart disease, Rina Kiers received a support heart. Now she cycles 10 kilometers every day, taking pictures along the way to support heart failure research. “With getting moving again, a tremendous freedom and joy comes back. I just feel like doing it again.”
“Without a support heart, I wouldn’t be able to make it for one meter,” Rina says of her action for the 2020 Utrecht Cycle Four Day event. “I’m already on day 38 of the 100, it’s fun to do and for a cause that my husband, also a heart patient, and I fully support.” On her e-bike, Rina is cycling 1000 km in 100 days to raise money for transplant and donor heart research.
In 2009, Rina was diagnosed with heart failure, with a genetic component, and received an ICD. Arrhythmias, treatments and modified work followed, and in 2015 she received an initial referral to UMC Utrecht. There her cardiologist, Nicolaas de Jonge, said: as long as you still have opportunities to get a little better yourself, you are not yet eligible for a transplant. “His words made a big impression, gave me something to hold on to. Exercise, healthy diet, fluid restriction and taking rest in time, he advised. That’s what I started doing. Plus medication. But three years later, I wasn’t doing it anymore.”
Because her disease is progressive, Rina found herself on the waiting list for a heart transplant in mid-2018. “Seventeen months later, I received a support heart because I was deteriorating so much. Otherwise, I wouldn’t have been here anymore. Thanks to the support heart, I have a body again and can get little bits of movement again. That’s how happy I am! I didn’t know this life anymore, I’ve been rejected for work for five years, so I didn’t know any better already. All because of my condition.”
Cycling is a wonderful way for Rina to show what is possible today with a support heart. “My father was 42 and died suddenly of, what they didn’t know then, heart failure. My older sister at age 45 after years of illness. Now doctors are so much further along. It’s no fun, with equipment around you and adjustments. I wear my support heart in a comfort belt with two batteries and a line that goes into my body. It is not allowed to get wet, so showering is complicated and exhausting. But I just wash myself at the sink. I’m a former district nurse, you really do get clean!”
Because of the corona pandemic, her physical check-up appointments were dropped; for a while Rina had them digitally and by phone. “A few times I still had to come because of complications, such as severe nosebleeds. When I was back at UMC Utrecht for my first checkup in June, my MCS coordinator of the support heart team, Irene Louwerse-Van Kan, heard about my cycling action. She asked if I could remember our very first conversation. Apparently I asked her then: if I get a support heart, will I be able to do a little bit more? That was my motivation, well that worked out!”
Rina was temporarily taken off the transplant waiting list. Placement back on the list, if her condition and screening allow, will be discussed again soon. “Support hearts are so developed that some people can just live with them for a long time. With getting moving again, a tremendous freedom and joy of life comes back. I just feel like doing it again.” After her daily bike ride, Rina’s husband puts her e-bike back on the charger at home and sits ready with a cup of tea. “That way we still do a little bit of it together.”
The Utrecht Four-Day Bike Ride 2020 will be held from Thursday, August 27 to Sunday, August 30, 2020. Within the theme “Healthy Living,” there are individual cycling actions by participants like Rina. With these actions they support the research into heart failure at the UMC Utrecht.
