Leonie still remembers what it felt like: living in a state of uncertainty. For years, her body slowly deteriorated due to an inherited heart muscle disease. Still, she kept going, as so many patients do. Until the moment she was placed on the waiting list for a heart transplant. No more making plans, living day by day, waiting for that one phone call. Now, fourteen weeks after her transplant, her story sounds different. “I’ve been given a new chance. The future is wide open again.”
Her story began twelve years ago, when Leonie suddenly retained 8 to 10 kilos of fluid within just a few days. “My stomach looked like I was heavily pregnant.” What she didn’t know then: it was the start of a long illness. In the year before that, she had ignored persistent symptoms: frequent headaches, constant fatigue, and daily use of paracetamol just to get through the day. “I thought: it’s stress, it will pass.”
Take care of your heart: recognize heart failure earlyUntil her body simply stopped cooperating, and she eventually ended up at UMC Utrecht. There, it quickly became clear that something more serious was going on: an inherited form of cardiomyopathy, in which the heart muscle weakens and pumps less effectively.
From that moment on, Leonie entered a medical journey while her life continued. Like many patients, she gradually adjusted her limits without realizing it. Being able to do less became the new normal. “If you can’t walk for an hour anymore, you walk for 45 minutes and then you say you’re doing fine.”
When doctors saw her condition worsening, she was referred to the transplant team. Around that same time, Leonie lost her daughter, an overwhelming loss that overshadowed everything. The medical process largely passed her by, but eventually she was placed on the waiting list. That turned out to be a difficult period. “With one foot I was grieving, and with the other I was in a process where I felt my body deteriorating and I was literally waiting.”
The waiting list affected not only her life, but also that of her sons. They lived with the constant tension that a call could come at any moment. At the same time, they wanted to live their own lives, something that didn’t feel natural while their mother was on the list.
It became clear that all of this together demanded a lot from her and her family. In consultation with her doctors, Leonie made a remarkable decision: she temporarily had herself removed from the waiting list so her son could travel to Australia. “I asked to be taken off the list myself, otherwise he wouldn’t go.”
What started as a temporary decision became almost a year. At the time, it felt liberating, not constantly anticipating what might happen. But over time, she realized her health was not improving. She took an honest look at herself and consciously chose to return to the waiting list, this time with a different mindset.
Not long after, the first call came: a heart was available. Her reaction: “Yes, but that doesn’t work for me, I have my birthday tomorrow.” Doubt, practicality, and emotion all came together. Still, she decided to go for it. “Then it would be a nice birthday present.”
She packed her things; her sons were right by her side, but just before leaving, the phone rang again: the heart was not suitable. “You go from such a high to such a low.” The disappointment was great, but it also brought clarity. She realized she was ready. “It was a good rehearsal.”
Almost a year later, the second call came in the middle of the night. This time, she remained remarkably calm. When the doctor called, there was even a hint of recognition: “Does it work for you this time?” Her answer was clear. She was ready. After more than four years on the waiting list, it was finally happening.
Beforehand, Leonie had arranged something special: a notebook. Her sons were asked to write something every day during her hospital stay and take photos, so she could later look back on a period she would barely remember herself. Leonie wrote the first entry while waiting for surgery; her sons continued daily. The notebook still lies unopened in a drawer. “Right now, I’m focused on moving forward. Getting better. Getting stronger.”
In the hours before her surgery, she took time for what truly matters. She visited her mother one last time. “I wanted to give her a hug.” Then she went to UMC Utrecht. This time, it went ahead.
The surgery went well. When she woke up, she felt it immediately: “That heart was beating incredibly well! And I immediately felt: this is right. The heart feels at home in me.” The trust was there instantly. For Leonie, it felt like a new beginning she embraced with both hands. “It’s a wonderful gift I’ve received.” During her admission, she learned she was the 700th heart transplant patient at UMC Utrecht, and the first of that year. “I think that’s quite special. It was meant to be.”
Leonie’s milestone is part of a bigger story. Over the past decades, heart transplantation has developed into a treatment that offers a second chance to more and more patients.
Heart transplantation is a relatively young medical treatment. The first successful transplant worldwide took place in 1967; in the Netherlands, in 1984. Since then, care has been concentrated in three academic centers, including UMC Utrecht. Over the years, UMC Utrecht has built extensive expertise in treating advanced heart failure and performing heart transplants. With its 700th transplant, the center reaches an important milestone. At the same time, the field continues to evolve through improved surgical techniques, medication, and research into artificial hearts and regenerative medicine.
During her hospital stay, Leonie felt anything but alone. She received more than two hundred cards from friends, family, and people in her community. Together with her sons, she turned it into a daily ritual: opening them together, reading them and hanging them up. The wall opposite her bed gradually filled with messages of support. “I felt so cared for, it gave me so much strength.”
These tangible signs of support helped her through a vulnerable time. Her bond with her sons grew even stronger. They were there every day, arranging everything and forming her steady foundation.
After the surgery, Leonie approached her rehabilitation with determination and positivity. Her recovery reflects the same drive she has always had. She wants to move, grow stronger, and go forward; sometimes perhaps a bit too enthusiastically, she admits. “My strength is that I go for it. My pitfall is that I might go a bit too far.”
What defines her most is her outlook on life: “I could list everything that’s difficult, but that won’t get me anywhere.” Instead, she finds strength in small things: a walk, the sun, and her creative hobbies.
Now, fourteen weeks after her transplant, Leonie is looking ahead. She knows recovery takes time, but that doesn’t stop her from making plans. “For now, I want to focus on things I enjoy.” Her advice to others: “Keep your courage. Keep doing things that give you energy. Keep moving.”
Leonie knows she will “never be the same again.” But that’s okay. She has gained something else: perspective. A future that is open again, one she is rebuilding, step by step.
* Leonie’s story was also published as part of National Heart Failure Week on the UMC Utrecht page: Take care of your heart: recognize heart failure in time.
The Transplant Center Utrecht is the expertise center of the UMC Utrecht for kidney, heart and lung transplants in adults. We provide care to patients with organ failure who are eligible for a transplant, and to people considering becoming organ donors. Our care is also there for loved ones of deceased donors.
At our center, care, research, education and innovation come together. Patients receive personalized, multidisciplinary care of high quality, tailored to their situation. We also develop and apply innovative techniques, such as regenerative therapies and organ replacement technologies. This is how we continuously improve transplant care.
