Sophie is waiting for her second donor heart

At age eleven, Sophie (30) turned out to be deathly ill. She had cardiomyopathy, which prevented her heart from pumping blood properly. As a result, she suffered a stroke and multiple TIAs. Sophie urgently received a donor heart. That heart now needs to be replaced. That is why Sophie is on the waiting list.

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've always said I never wanted to have open-heart surgery again. Yet I am choosing it again. I enjoy life way too much.”

Hope, angst and gratitude

Sophie feels more uncertainty and fear this second time around. “I might be even more scared than the first time. I have a lot of 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 kept from the stroke, she also has diabetes and kidney damage. “There are extra risks. I am afraid that I will wake up after the transplant and my body won't work anymore.” Sophie talks about this with her partner, 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 allocates her energy. “I always sleep in the afternoon. I do things, but I constantly wonder if something is worth the energy. Afterwards I often have to recover. Still, I can still do fun things. I couldn't do that the first time.” Her situation is now stable.

That is why she has now been waiting for a new donor heart for a year and a half. Sophie does not know when her turn will come. “I take my phone everywhere with me, even in the shower. You never know when they'll call. The waiting gets somewhat familiar, but remains nerve-wracking. For me, but also for my partner and family.”

First transplant

Sophie remembers little of her first transplant. “I was deathly ill and lay still in bed. The doctors were afraid of strokes.” Unfortunately, that is also what 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 hardest part.”

More choices and guidance

This second time it is not an emergency transplant. Sophie can therefore better prepare herself for the transplant and its consequences. She discusses everything with her partner 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 it. But if necessary, they are allowed to decide otherwise.”

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

Salvation

Sophie hopes a heart will become available soon. She knows that this is preceded by a death. “That death is separate from me. That person is not dying for me, but because they were already going to die. That is intense for the surviving relatives. For me, it is my salvation. I am very grateful for that.”