Here, patients who received STAR (and who are not part of the PAB) share their experiences in their own words. These stories show what treatment means in daily life and give hope and support to others. We invite you to explore these voices and feel connected with people on a similar journey.

Irregular heartbeat
Heart rhythm disorder means the heartbeat is irregular, it may be too fast, too slow, or skip beats. People with this condition often feel tired or short of breath. Sometimes it van even cause fainting because of a blood pressure drop. If left left untreated, the problem can worsen and may lead to more serious complications, such as heart failure or, in severe cases, death.

Medication and ablation
“Together with Mr. Donker, we chose radiotherapy because the usual treatments had not worked,” says cardiac electrophysiologist Rutger Hassink. “Medication is the first treatment we try for heart rhythm disorders. Sometimes it doesn’t help, for example when the body no longer responds to the medication. It can also happen that the side effects are too severe. In those cases, we look at the second option: ablation.”

Too far to reach
Rutger explains: “Ablation is a procedure where we insert thin tubes, called catheters, through the groin and guide them to the heart. With an electrode, we burn away the piece of heart tissue that causes the hearth rhythm problems. This active spot then becomes scar tissue, so it can no longer cause rhythm problems anymore. But sometimes we can’t reach the right piece of heart tissue with a catheter, for example because the problem originates from a spot deep inside the heart muscle. In some places, that muscle is at least a centimeter thick; if the source lies deep inside, it’s too far to burn away.”

The right time
This was exactly the case with Gijs Donker, as became clear during the ablation Rutger and colleagues performed in the autumn of 2021. Shortly after Gijs woke up from anesthesia, the cardiac electrophysiologist told him about a treatment UMC Utrecht planned to offer in the future: radiotherapy for heart rhythm disorders. 

Radiation oncologist Joost Verhoeff had earlier started research into this approach. As project leader, Joost had applied for and received a Horizon 2020 grant for the so-called stopstorm.eu project. By last year, UMC Utrecht had learned so much that they were ready to treat their first patient.

Better quality of life
Gijs says: “I immediately told Dr. Hassink I wanted to be considered for this treatment. Shortly afterwards, I got a call at home: was I still interested? I was invited to meetings with cardiologists Meine and Hassink, and radiation oncologists Verhoeff and Van de Pol. At the end I said: I’ll do it, but only if my wife and two sons agree. They were on board too. For me, the choice was quite simple: the treatment was my only chance to improve my quality of life.”

As safe as possible
The procedure took place on December 9 under the leadership of radiation oncologist Sandrine van de Pol. She says: “The radiation itself only took a few minutes. We spent much more time on preparation. You need to know exactly which part of the heart tissue to treat, so you avoid damage to other parts and make it as safe as possible. That’s why we first made a CT scan and an MRI scan of Mr. Donker’s heart while he was in the same position he would be in during treatment. We also used the information Rutger had gathered during the ablation. This gave us a target area measuring 6.5 centimeters wide and 5 centimeters long. Inside that area was the heart tissue that was causing the problem, and we disabled it with radiation.”

Exciting
“It was exciting and a little unusual”, Sandrine adds. “Normally we treat cancer patients and make a radiation plan that avoids the heart. This time, the goal was to target a part of the heart. We did this using stereotactic radiotherapy with a very high radiation dose. We’ve used this technique for years on many different parts of the body, but this was the first time we used it on the heart.”

Less fatigue
Gijs Donker: “Dr. Van de Pol had told me that I wouldn’t feel better in the first few weeks after radiotherapy. The treated heart tissue would die off slowly, so the effect would take some time. But eventually, I started feeling better. I noticed not only that I was less tired, but I could see it from the data from my ICD, my implantable cardioverter-defibrillator.”

Fewer activations
He explains: “An ICD kicks in when there’s a dangerous heart rhythm. In my case, it gives five pulses. UMC Utrecht checks remotely how often my ICD is activated. I can also track this myself via the hospital’s patient portal. In December and January, I still had fifteen to twenty activations a month, but in February it started to go down. Now I have only two to four per month.”

Walking again
Gijs has a significant medical history and is therefore happy with the new situation. “Since 2010, I’ve had open-heart surgery, a pacemaker, and a stent. Starting in May 2021, I was taken to the emergency room several times by ambulance because of rhythm disturbances. My heart rate would be 130 or higher, and I’d feel warm, tired, and restless. Compare that to now: I can walk for 45 minutes to an hour and cycle for an hour on my e-bike. I have nothing but praise for the doctors and nurses at UMC Utrecht, not only for their medical expertise but also for the personal attention they gave me.”

Source (Dutch): https://www.umcutrecht.nl/nieuws/primeur-voor-hartpatient-gijs-donker