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Living with a hole in my heart

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Living with a hole in my heart

This essay – living with a hole in your heart – is the true first-person story of Pavlo Shopin, an adult with congenital heart defects, navigating mortality, and life as a migrant.

At 34, I have a congenital ventricular septal heart defect that has not been operated on. There is a tiny hole in the wall between the two lower chambers of my heart. It doesn’t bother me too much except that it keeps me aware of my mortality.

Displaced by war from Luhansk in 2014, I have since lived in different places in Ukraine, UK, and Germany. I am currently a visiting scholar at the Humboldt University of Berlin.

When I was sixteen, the senior surgeon of the major clinic in the Luhansk province told my parents and me that without heart surgery to close the hole in my heart, I would die in my 30s. I am in my thirties now, and my life has always been precarious and uncertain

Living with a hole in my heart: a medical infographic that compares a normal heart on the left with hearts afflicted by ventricular septal defects, an abnormal opening (hole) in the heart, with annotations.
Caption:

"I am living with a hole in my heart: I have a congenital ventricular septal heart defect."

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©rob3000 / Adobe Stock

 

My parents and I did not trust the Ukrainian healthcare system to fix my heart, and besides, the surgery would cost a lot of money. At some periods of my life, I could not afford it financially. Other times I did not feel it was an absolute necessity. The heart defect is slowly destroying my cardiovascular system, but the changes are largely imperceptible, I hardly ever notice them.

When I am abroad, I usually take part in prestigious projects in which good health can be assumed. I cross borders to perform tasks and achieve things, not to get medical treatment. I have done internships in the Canadian Parliament and the German Bundestag, read for my M.Phil. and Ph.D. at Cambridge University did research at UC Berkeley, and now have a research fellowship at a major university in Germany.

In Germany, I rely on private insurance that should not cover pre-existing conditions, as far as I understand it. In my fellowship contract, it says that I should be of adequate health. My condition does not impede my academic work, but no cardiologist would ever regard me as able-bodied.

In 2014, my hometown was ravaged by war. Leaving it behind, I became an internally displaced person. I ended up working as a language assistant for the special monitoring mission of the Organization for Security and Co-operation in Europe. I traveled with international observers close to the conflict area and helped interview local actors. It was an intense period in my life, but I was not in the thick of things since I left Luhansk and decided not to come back because of the military conflict.

In 2018, I applied to work for the OSCE again, this time in Kyiv, Ukraine’s capital city. But the organization had changed its employment rules. When the war broke out, there were few prerequisites for a language assistant. This time, for a job far from the conflict area, the candidate had to undergo a medical examination and prove sound health.

I tried to do the medical check-up, but when my heart rate turned out to be irregular and fast, the doctor looked at me. He said: “You have to take the meds for a few weeks, and then come again to see if your condition improves. Your heart rate is 140. Can you feel it?”

I have been living with a hole in my heart my whole life. I can feel when it beats too fast but have learned to accept it.

While I am abroad, I stay healthy and well. I have been in Germany since October 2018. I hadn’t visited any kind of doctor since January 2018 when I got an offer to work for the OSCE but could not complete the medical examination. I did not wait until the final decision of the doctors. I left the examination unfinished and informed the organization I had to withdraw my application for health reasons. The competition for that OSCE job was fierce. I won it, but living with a hole in my heart prevented me from getting it. In academia, I do not have to prove that I am fit, and it is always presumed that I am just fine.

I applied for a position with the OSCE in 2018, because my job at a university in Ukraine paid very little. Fortunately, I later won an opportunity to come to Germany. Still, I cannot justify to myself why my position in Germany pays over ten times more than my teaching post in Ukraine.

The discrepancy is glaring and unfair. Here in Germany, I am not worried about my sustenance, but I cannot have the hole in my heart fixed because of the provisions of my contract. When I did a Ph.D. at Cambridge University, I visited a GP for other reasons and never asked to have a medical examination of my heart.

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There is a hostile atmosphere toward migrants and refugees in the public sphere in the UK. We are seen as medical tourists and free riders. I resent this xenophobic vision. My heart failure has made me feel solidarity with the people on the margins. But there is no stigma for me. Nobody quite realizes what it is since I don’t like talking about it. Except for cardiologists, who ask me, “Can you feel it?” I appreciate that they can understand it.

From my late teens until 2013, when I was 27, I gained weight under the stress of cramming for language tests, exams, constantly jumping through the hoops of competition to prove my worth. I had no energy at the end of the day, stayed in bed, slept for more than eight hours a day.

I was in my hometown, working as a lecturer at university when I felt my lifestyle started to affect my heart and overall health. I needed to change. I started playing tennis, took up exercising, and went for long walks to lose weight and help my heart. I played even when I had a cold. I just took some pills against the cold and fever and went to the courts. I learned to have several tennis partners to be able to play regularly. In 2013 I weighed 83 kilograms, and within a few years, I lost 20 kilos. Today I am gaining weight again because of Covid-19 quarantine measures and working from home.

2013 was an important year for me. My fingers and toes went numb when I walked for more than forty minutes, my lungs felt heavy and sometimes made suspicious sounds. Exercises, tennis, and changing my diet helped me improve my health. It was also the time I seriously considered having heart surgery to repair the hole in my heart. Not that I can avoid thinking about it today. If the risk that I lose my life on the operation table is 3%, is it worth it? Can I trust the corrupt healthcare system in Ukraine? Do I feel bad enough? Will there be a time in my later life when an operation can save me? If my heart fails, eventually, will there be any reason to try to close the hole in it by that time? Is it too early to have heart surgery? Might it be too late in the future?

Once I played tennis with a medical student in Cambridge. I told her I was living with a hole in my heart so she brought a stethoscope to listen to my heart. The defect can be heard using a simple device. The noise is high-pitched and discernible because the pressure is high, as the hole is small.

I am not afraid of being drafted into the army, thanks to my medical condition. I have a certificate from the medical commission in Ukraine that says I have limited ability in times of war. There is no formal state of war in Ukraine, and even then, I would not take up arms.

Once, I shared a compartment on a sleeper train with three cardiologists going from Luhansk to Kyiv. I told them I was living with a hole in my heart, and one of them told me about the alarming symptoms that could follow in the future. When I said I was going to Cambridge soon, they wondered why anybody would want to invite to their country someone who might suddenly die. One of the things I did not want to share was that I preferred to sleep on the right side of my body. It was one of the symptoms of heart disease they mentioned. They drank alcohol, and I refused to join the fun. There is a lot of pressure to drink alcohol in Ukraine. One of the cardiologists remarked, “If you were drinking with us, I would not have to scare you, and we would be just toasting each other over a glass of brandy.” I neither drink alcohol nor smoke. This is the bare minimum I can do for my health.

Occasionally, I have chest pain: my heart hurts, and I cannot breathe deeply as it makes me uncomfortable. Since I have started doing sports regularly, this happens less often. Every time my heart hurts, I don’t know what might happen and fear for my life. Yet, I have accepted my sudden mortality. As a doctor of philosophy, I can carefully engage the idea that everybody dies. Death is part of what it means to be human.

Some day I might have my heart operated on, but until then, it is what it is. Metaphorically speaking, I have long been dead inside. I once saw a meme about a vending machine: A note on the machine said that there was no longer light inside, but the machine still worked. The author wrote under the image: “It is the same with me.” For me, the machine might not work, but there is still light inside. Life goes on.

 
author-img
Article by
Pavlo Shopin

Pavlo Shopin is a language and literature scholar, focusing on metaphors for bodily experiences, but also translation, politics, and society. He has a Ph.D. in German Language and Literature, University of Cambridge.

Caption:

Every time my heart hurts, I don’t know what might happen and fear for my life. Yet, I have accepted my sudden mortality. As a doctor of philosophy, I can carefully engage the idea that everybody dies. Death is part of what it means to be human.

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