Sophie is waiting for her second donor heart: 'I might be even more scared than the first time'

Almost twenty years after Sophie's first transplant, her cardiologist told her that her donor heart would need to be replaced within a few years. She had to think about that carefully. "I have always said that I never wanted to be opened up again. Yet I am choosing it again. I think life is way too much fun."

Hope, angst, and gratitude

This second time, Sophie feels more uncertainty and fear. "I might be even more scared than the first time. I have many questions. When will they call? What if no heart becomes available? How will I wake up? How will things go afterwards?"

Her fear is also related to her health. In addition to the symptoms Sophie has been left with from the stroke, she also has diabetes and kidney damage. "There are extra risks. I'm afraid that I will wake up after the transplant and that my body won't work anymore." Sophie talks about this with her boyfriend, family, and doctor. "I am always allowed to call the hospital. But nobody has answers. I find that difficult."

Sophie is less sick than the first time, but she gets tired a lot faster. She no longer works and carefully divides her energy. "In the afternoon I always sleep. I do things, but I constantly wonder if something is worth the energy. Afterwards I often have to recover. Yet I can still do fun things. I couldn't do that the first time." Her situation is stable now.

That is why she has now been waiting for a new donor heart for a year and a half. Sophie does not know when it is her turn. "I take my phone everywhere with me, even in the shower. You never know when they will call. The waiting gets used to, but remains exciting. For me, but also for my boyfriend and family."

First transplant

Sophie remembers little of her first transplant. "I was gravely ill and lay quietly in bed. The doctors were afraid of strokes." Unfortunately, that also happened to Sophie. She suffered a stroke and multiple TIAs. Her left side became paralyzed. It was clear that Sophie needed a donor heart. Eleven days after she was placed on the European waiting list, a heart became available.

That whole period feels like a trauma to Sophie. "You forget the pain, but you remember the uncertainty and loneliness. I had no control over the situation. I found that the most difficult part."

More choices and guidance

This second time it is not an emergency transplant. Sophie can therefore better prepare for the transplant and its consequences. She discusses everything with her boyfriend and cardiologist and signs the consent form together with him. "We also received an explanation about the transplant, the risks, and the recovery. I already knew a lot." Sophie could choose between the standard method and the heart-in-a-box-technique. "I chose the standard method because the doctors have more experience with that. But if necessary, they may decide otherwise."

According to Sophie, the knowledge and guidance have improved. "There is now more attention for the mental part. You speak with a social worker who looks at whether you have enough support around you. Psychological help is also possible after the transplant. That was different twenty years ago."

Salvation

Sophie hopes that a heart will become available soon. She knows that is preceded by a death. "That death is separate from me. That person is not dying for me, but because he was already going to pass away. That is intense for the surviving relatives. For me, it is my salvation. I am very grateful for that."