My Open Heart

I started to walk faster, legs shaking, and sheer panic overtook my entire body. As fast as my shaking legs could take me, I stumbled down the escalator of Oxford Circus station, attempting to get home. I carried the ‘panic attack’ label the doctor had kindly prescribed me the week before. The tube approached; it was rush hour on a cold December night. The carriages were full. I boarded, sank to the floor in a ball and watched as all eyes turned in on me. I couldn’t ask for help, I’d already tried that at the platform, peering into the driver’s eyes.

I could only go one stop, and with sheer panic I stumbled off the tube and out of Tottenham Court Road station. As the world blurred around me I found a taxi and made my way to bed. I couldn’t tell you how I got home that night, I was numb. The doctor was right; I was a young, fit and healthy 18 year old, the odds of something being ‘wrong’ were slim, in her opinion.

“It must be panic attacks, you’re so young and I can’t see it being anything more serious”, she was convinced, “You are feeling emotional; having left home and moved to London. You need to get used to it.”

I had been seeing the doctor in secret for a few weeks. I had only been living in London for 5 months and for 5 weeks of that I had been fainting and having unfamiliar sensations in my body. It was embarrassment that stopped me saying anything; I was living the dream fashion designer life in London as a student. I wanted to make my parents proud – illness and pride didn’t go in the same sentence. Swallowing my citalopram medication I stayed quiet. At the tender age of 18 I was petrified by the vast amounts of power the mind could have over the body.

I returned home to Wales. In desperation I visited my childhood doctor. There was an aching feeling inside me. Maybe I was having panic attacks, but I had to be sure this ‘feeling’ was not just my mind playing tricks on me. The blackouts were becoming more frequent and I was terrified of feeling sick in public. What if I were to faint on the tube? Who would find me? Would I find myself in the back of an ambulance? I had no trust in my body. My body was giving up on me.

The doctor took one look at my ECG, called me into her office and asked if I had been to see a doctor in London. I lied. I didn’t want her to know that I had a prescription for anxiety medication, that I’d spent the past few months afraid to exert myself. I wanted her to shed light on the situation, and think this had suddenly happened.  However this seemed to have worked, she spotted something out of the ordinary with my heart. I was referred to a cardiologist and I returned to London to start the first year of Textile Design.

Nine months later I found myself in the cardiologist’s office. He examined me thoroughly, listened to my heart and stopped for a long period over my left shoulder blade with his stethoscope. “You can put your top back on and take a seat.”

I was no longer alone; it was no longer a secret. I told my mum and dad that tests were being performed and likely to be nothing. Just panic attacks.

‘I reviewed this 19 year old lady in my clinic today. She has noticed a sensation of palpitations over the last 6 months and during these episodes she will feel her heart racing and beating forcefully. She gets breathless symptoms when walking upstairs and there is no link to her menstruation cycle. She is getting a loss of consciousness weekly and tells me she is exhausted. She has an ejection systolic murmur which was particularly audible over the left scapula. It also radiates to the carotid. 12 lead ECG today shows sinus arrhythmia with a normal axis and a narrow QRS. She has a partial right bundle branch block pattern. The QT interval was normal. She clearly needs an echocardiogram. I am particularly keen to exclude coarctation of the aorta. This will be rebooked and I will be in touch with the result.’

It was 17 months later I found out I would need open heart surgery. I had a camera put down my throat. I gagged, fainted and got over the anxiety attack I had going into the room. I was taken to a small office and told that if surgery was not performed soon I could find myself with an oxygen mask, a wheelchair – or quite bluntly in heart failure.

Following the announcement I acted as if nothing had happened. I moaned my throat felt sore and I proceeded to eat pea soup in my favourite cafe. This wasn’t the only test I had to determine the ‘problem’ but this was the final test that gave the doctors the go-ahead to announce surgery.

‘Dear Izabel. As has been explained to you in the clinic, you were born with a congenital heart condition known as Sinus venous atrial septal defect. Associated with this defect you have an abnormality in how two of the pink veins drain from the right lung into the heart. They should drain into the left atrium but instead drain into the blue side of the circulation. It is likely that your symptoms of palpitation have been caused by this heart defect. Left untreated you are likely to experience worsening of your symptoms, heart failure and the development of pulmonary hypertension. For the above reasons it is recommended that you have an operation to deal with the heart problem. This operation is done through a scar at the front of the chest and the heart/lung pump is used. The abnormally draining pink veins are directed to the correct side of the circulation and the hole between the top chambers will be closed off. The recovery time after surgery is 8 weeks but it can be considerably quicker if things go smoothly. There are potential risks with the surgery. The operative mortality is under 2% meaning that more than 98 out of 100 people undergoing this operation will survive. There is a risk of brain damage or kidney damage as a result of the surgery. There is also a small risk of damage to the electrical system of the heart.’

Would it have been acceptable at that point to write back and tell him that out of the 2% of people who die, I would be one of them? Fear crawled into my body, pitched tent and stayed there.

In the weeks that followed the letter I was convinced that walking and moving would cause my heart to fail. I was spending more time in Wales and less time at university and in December 2011 made the bold decision to take a year off. Every day became a blur, a fight between looking strong and feeling frail. The days when I’d leave the house would send me into a spiral of worry, worry that people could see into my chest. The mirror was a place of sadness as I spent my days staring at the site of where there would soon be a scar. My body didn’t feel like mine, I had been invaded – I had been shattered.

The days were dark and I spent many of them counting down the hours until I could go to bed and cry. I’d wake up late to shorten the days and be in bed early to listen and count my heart beat. Coffee dates and dinner nights turned from enjoyable evenings to toilet breaks dripping with sweat caused by the grip that fear had on me.

The days to surgery got closer as I became so lost in waiting for bed I immersed myself in the illusion of time.

And on March 21st 2012 I awoke after a successful 6-hour open heart surgery.

“I am alive!”

by Izabel Oag