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Bastiaan has been waiting for a new heart for six years, but lives: ‘There is always hope’

The heart of 57-year-old Bastiaan Zuyderland is best compared to an old door. The hinges squeak, it opens and closes less and less and it becomes weaker.

Until there comes a time when it doesn’t close at all. But Bastiaan does not want to think about that, because he is not like that. Moreover: there is a good chance that the moment will not come at all. Because there is hope. There is always hope.

Not so fit

“And that hope makes my life livable,” says Bastiaan on the phone. It is not allowed to meet in real life, not even RIVM-proof at a distance of one and a half meters. Because yes, corona. “I’m not the fittest, as you may understand,” Bastiaan laughs. In fact, his life is tied to a string. Literally. He has a pump that keeps his heart working. “When that thing stops, I stop too.”

Birds sound in the background – he is sitting outside, in the mega garden of his house in the Limburg village of Kleine Meers, on a winding river in the Maas. He must be under the umbrella, because he has pills for his heart that are ‘dangerous for the sun’. It can discolour if left in the sun for too long. “Then I’ll be as blue as a smurf.”

‘The fun’ – as Bastiaan calls it cynical – started in 2010. Bastiaan, an energetic father, husband, theater maker and artist, reported to the doctor because he had been tired and short of breath for a while. Maybe there was something wrong with his lungs, so GP Bastiaan referred him to the hospital. The lung photos turned out to look good there: “Nothing wrong with your lungs, sir,” he was told. So he was referred to the cardiologist. “There is only something wrong with your heart, sir,” was the message there.

Hereditary defect

Bastiaan has a defect in the heart muscle with the difficult name of dilated cardiomyopathy. “I had to practice on that, I am not really into those technical terms,” ​​says Bastiaan. Currently his heart beats 40 times a minute, it has almost no pumping power anymore. Because by comparison, an adult man has an average heart rate of 60 to 100 per minute at rest.

The deviation is hereditary, but did Bastiaan know much? “My father had a bad heart, has even been taken away for death after an infarction. He first got a pump and then a ‘new heart’, a pump, which he turned 75 by the way. But I don’t notice anything had nothing at all no GP knew my face If you get there in time like my 22 year old son now you can keep an eye on it and suppress it with medicines I found out when the damage was done. “

His heart was only working thirteen percent when he heard what was going on. After the cardiac video at the cardiologist, Bastiaan was no longer allowed to walk on his own, for fear that his heart would immediately think: ‘Watch it, I’ll stop’. Bastiaan was given a wheelchair and taken to a hospital bed. “I was always busy with theater performances, along with my love, and we were also abroad a lot. Suddenly I was an old man and there were doctors around me who were saving me. I have learned by now: the faster they run, the closer death is to you. “

There is no cure for Bastian’s deviation. At first he was given “a whole zipper of pills” to keep his heart going, and a super pacemaker; a small box under his chest with built-in AED. That helped for a while. And so he and his doctors hoped from one straw to another.

It went the wrong way

In those years Bastiaan thought twice: end of story. The most intense moment was in 2014, when he was on the monitor in the hospital in Sittard, near his home town. The pacemaker stopped doing what it was supposed to do. “Then you see that your heart beats painfully slow, and always a little slower … Very double to behold. On the one hand you see with your own eyes that it is going the wrong way. At the same time you also know that that device is your rescue and inform the doctors that things are not going well. “

Now, when he sees a scene in a hospital on TV, and hears the beeps from the equipment around such a hospital bed, Bastiaan is shocked. “I have a beep allergy. Even if I suddenly suddenly hear a beep on the street at the traffic light, for example, or the smoke detector indicates that the batteries are empty: terrible.”

In the meantime I started recording videos. I had to say hello to them, say I loved life and loved them.

After Bastiaan saw his own heart fail on the screen, he was taken to UMC Utrecht with a rush in the ambulance. He would get a pump with major surgery, but whether he would survive that operation? Nobody was sure about that.

Bastiaan was what you call premortal: part of his body was already quitting. “The doctors said, ‘We are going to call your wife and son, they have to get in the car now. In the meantime, before they were there, I started recording videos with my iPad. If they were not on time. I she had to say goodbye to myself, say I loved life and loved them. “

Too intense to see again

He looked at them one more time after the operation and the placement of the pump. “It’s confrontational,” he says. “Because it’s so fragile. It’s kind of an awareness of your mortality. Such a movie is too intense to show to the people you love and who they actually were. the moment. I also said to my family, “If I have to, I’ll do it again. But now I’m throwing them away, because I’m still there.”

That he is still there, he owes to that pump. “The greatest work of art by surgeons,” says Bastiaan firmly. “I can do anything with that thing.”

The pump is under his heart, like a kind of artificial heart, and is attached to a cord. That cable runs out through his stomach, to batteries in a bag. He attached a tough guitar strap to it, because the strap that was attached to it was boring and cut into his skin.

Jimi Hendrix

Bastiaan was inspired for the bag by guitar hero Jimi Hendrix. “I saw in a documentary that he always had his guitar on. He took it to the restaurant, to bed, to the supermarket. Then I thought: just like me and my bag.”

“We are inseparable. When the batteries run out, I hear a very loud beep and I have to change them immediately. It can also be plugged into the socket, that pump, but then I become just like a goat on a string.”

When he goes out for a day (in non-corona times, so), he takes two pairs of batteries with him. One to exchange, and one pair of spare. Fifteen life-saving pounds in his backpack. At night it is (or is actually lying) at the socket. “And if the power goes out, an alarm goes off and I have a battery for thirty hours.”

How do you wait?

Like Bastiaan, that pump does not have eternal life. “But it is a perfect interim solution.” Because since he got that pump, he has also been put on the waiting list for a new heart from a donor. From that moment on, the Great Waiting started.

“I think I have become an expert in that,” says Bastiaan. “I’ve been thinking about it a lot lately. What exactly is waiting? And how do you do it?”

In the beginning, the wait was not that difficult. “There were about a hundred people on the list for me who needed a similar donor heart – including men with the same blood type and build – so I thought I can see it. I realized perfectly well that such a heart was not for the taking “It humbled me. The wait was a bit in the background, and for the rest I just lived my life, with that pump, and my love.”

The phone call…

But at the end of last year, Bastiaan received a call. He was at the top. Had to be on edge. Could be called any time. “Or not, you just don’t know,” he says. “I could no longer leave my mobile phone anywhere. A new kind of waiting arose. And it freaked me out. I thought in advance: I can do that, but be so sharp, about something so big and important, it was so paralyzing. I was thinking all day, now I’m going to get a call. My phone was constantly on my lap. “

“I couldn’t turn it off, and at some point I could do it worse and worse. I started doing less and less. Eating less and less. Why should I make another sandwich, I thought, I can be called like that. At one point I thought: I am only breathing now. I am not doing anything at all anymore. “

Something had to change. Surely he could not put his whole life – precisely what he so fought for and loved – into the wait?

“Creativity is like breathing”

And then an idea came up, as if “a Willie Carrot Light was on”. “I decided to write my story. I am a visual artist, creativity for me is like breathing.” He laughs briefly. “Or does that sound crazy, from a heart patient’s mouth?”

“But really,” he says immediately. “If you want to bother me, then you must deprive me of the opportunity to make something. Art is a way for me to express myself, I must be able to tell my story, I must be able to find a form to contain the world around me And because of that heart I could no longer do my work as a director: you have to plan, prepare a performance. I couldn’t plan anymore, because of that waiting. “

Especially now that a new way of waiting has emerged, Bastiaan needs his art. Because no, you do not make it up: Bastiaan is at the top of the waiting list, but if a heart is available now, he still cannot get it. Due to the corona crisis, these kinds of operations are not performed now: after all, Bastiaan must be corona-free. Otherwise, there is a high chance that he will not survive the operation and his body will repel the heart.

But also: a deceased person whose heart he could get must be tested for corona and that takes time. “And when the result of such a corona test is there, a donor heart is no longer usable. It is about hours,” explains Bastiaan. So wait again. First on a heart transplant, now until the corona crisis is over.

No longer paralyzing

But now it is no longer so paralyzing, because Bastiaan has his project. He draws his story in comic strip, in which he is the main character himself. He can be recognized with the eternal bag on his shoulders, as Tintin can be recognized by his crest, and Suske and Wiske by their red and white clothing.

We all have to wait now. Everyone around you is waiting. To be able to work again, exercise, dance in the pub. It can piss you off, but it doesn’t help you.

Bastiaan drew the day of the diagnosis, but also pictures of his funeral, how he likes it. “We have a meadow behind the house, with an apple tree in it. Such an old, fat one. An owl lives in it. I want the ceremony underneath, whether it be early or in ten or twenty years.”

With different drawings, of a man in a bus shelter that is temporarily out of use, he tries to express ‘this new waiting’. “We all have to wait, now. Everyone around you is waiting. To be able to work, play sports, dance in the pub again. It can piss you off, but it won’t help you. That’s what I learned. you adapt, you have more fun. Then it becomes fun. “

40,000 pills

For example, Bastiaan now enjoys making his drawings and paintings in his studio – which is also in his beautiful large garden. One of his favorite works, which has also recently been published in Het Parool: Bastiaan in a swimming pool, filled with medicines. 40,000 pills. “I figured out how much I should have had in the last ten years. I came to 40,000. No joke.”

Waiting get used to it, says Bastiaan. Even that Great Waiting, and even today. Sure, sometimes a scenario looms you don’t want to think about, he explains. What if there is a second corona wave? How long does he have to wait?

“But I stay in the here and now. Through my art, through the sun, through my love, my son, through friends.” Bastiaan lives, he says. And at the same time he waits. “But I’m not so much into it anymore. It doesn’t bother me anymore.”

There is a chance…

Because even now, during this conversation, there is a chance that he will be called. “Suppose I get a call, then it may be the doctor who says: ‘Bastiaan there is a heart for you’.”

And then? What are you doing then? “Then I say ‘goodbye’ to you, I will pack my things, go to the hospital, on my way to my new heart. And then it’s okay.”

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