Refuse to fail
Simone Gomes, 34, from London, wants to show everyone that she really is undefeatable...
I was losing control of my body
Laying in bed, I placed my hand on my chest. Thump, thump,
thump – I could feel my heart beating.
It was 2001, and at 16, my life was filled with friends, family, school work, chores, music and laughter.
But sometimes, I’d need some peace and quiet.
I’d creep into my room, lay on my bed, block everything out and just listen to the sound of my heart in my chest.
To me, it was the most beautiful sound in the world.
The sound of my heart beating reminded me that I was still here.
Born in December 1985 at Guy’s Hospital, I’d quickly been diagnosed with a congenital heart defect.
My mum Annette, now 66, and dad Keith, now 70,were told that my heart had three working valves instead of four, and that only one chamber was working.
It meant I would only get 85% of the oxygen my body needed, and that I would probably die before I reached 25.
I had surgery at three months old to widen my valves, and after that, I had to adapt. Growing up, I got tired easily, was often in the school’s sick bay.
I couldn’t take part in PE lessons, was never allowed to exert myself.
At seven years old, I had another operation where doctors placed a shunt in my growing heart.
From then on, I had to take blood thinning medication every day.
But despite spending a lot of my time in hospital, I was a happy, bubbly kid, loved spending time with my friends.
As a teen, though, it became harder to deal with.
Because my body had never received enough oxygen, it meant I’d not grown as tall as my friends, making me feel isolated. I was the shortest kid in my class, and the scars on my chest from my childhood operations did nothing for my self-confidence.
I was so tired all the time, too – sometimes having to come home early from school.
But I was strong, pushed on and did the best I could.
‘I don’t want anyone feeling sorry for me,’ I told Mum proudly.
By 2005, at 19 years old, I was in college studying performing arts.
Despite the short life expectancy doctors had given me, I was determined to become an actress.
One morning, after Mum and Dad had left for work, my boyfriend at the time, Sean, came over.
As we sat on my bed chatting, though, I suddenly felt dizzy, the room spinning.
Stumbling to the bathroom, I looked in the mirror to see that my face had become pale, apart from the dark circles that had formed under my eyes.
Just then, my legs suddenly gave way – as hard as I tried, I just couldn’t move them. ‘Sean!’ I cried, terrified. Sean came running in, looked at me in shock,
‘I’m calling an ambulance,’ he cried.
I was quickly losing all control of my body – within minutes, I was going into spasms, and I’d wet myself.
When paramedics arrived, I was struggling to breathe.
Rushed to Luton Hospital, doctors and nurses were rushing around me, sticking IV lines into my arms, pumping me with drugs to stabilise me.
The next thing I remember is waking up to the worried faces of my parents.
Sean had called them. ‘What’s going on?’ I asked, my words slurred.
A while later, a doctor came in.
‘You’ve suffered a stroke,’ he explained. A stroke?! But I was only 19! After running tests, doctors found that the blood thinning medication I’d been on for years had caused me to have a stroke.
I’d lost all the movement
I had to wait for someone else to die
on my right side, couldn’t speak properly, couldn’t do anything on my own.
And for the next few months, instead of going to college, I was going to physiotherapy, speech therapy, and counselling sessions.
I had to rebuild my life. Mum and Dad were with me every day, spurring me on, and finally, a year later, I was able to return to college.
But my stroke had taken its toll – I struggled to walk long distances, had very little strength in my arms.
Each day was a battle for me, but I pushed on, got stronger and stronger.
On my 25th birthday, I toasted to still being alive – I may have suffered a stroke, but I was still here, despite what doctors had predicted.
But sadly, my bad luck hadn’t run out.
In 2011, aged 26, after a few days of feeling more lethargic than normal, I started to feel nauseous, too.
Worried, Dad came to the hospital with me.
And after a scan, I was delivered a blow.
‘Ms Gomes, you’re in heart failure,’ my doctor said.
I couldn’t believe it – after 26 years, and a stroke, my heart was finally giving up on me.
My tired old heart had been through enough, and it could give up on me at any moment.
With no time to waste, I was transferred to The Freeman Hospital in Newcastle – a sixhour drive away
I was told it was one of the best heart hospitals in the country, and while I felt I was in good hands, I was scared being on my own.
Mum and Dad came to see me of course, but with jobs to go to, they couldn’t be with me all the time.
Meanwhile, I was placed on the organ donor register.
Having a new heart was my only chance of survival. Now, all I could do was wait. Kept at The Freeman Hospital, I had very little strength, couldn’t even use the bathroom on my own.
Each day I felt more energy being sucked out of my body, as if I could feel myself dying.
I needed a nurse’s help with everything, but they were all so wonderful to me.
‘Do you think I’ll be here this time next year?’ I asked a nurse one evening.
She smiled at me, and then tears formed in her eyes.
She didn’t have to reply for me to know her answer.
If a donor heart wasn’t found for me soon, I would die.
But sadly, for me to receive a donor heart, meant someone else would have to die.
‘I feel like I’m waiting for a stranger to die,’ I told Mum. It was a horrible feeling. Finally, three long months later, a donor heart was found.
With no time to waste, or to even say thank you, I was rushed into theatre.
Over 10 hours, doctors cut me open, removed my dying heart and replaced it with a new healthy one – the heart of someone else whose life had just been cut short.
Thankfully, the operation was a success, and after five more weeks in hospital, I was finally allowed to come home.
To have suffered a stroke and heart failure before the age of 30 and come out the other side felt incredible, and I was finally able to look towards the future. In 2015, I met my partner Marc, 36. We’re now engaged, and couldn’t be happier. I recently got involved in We Are Undefeatable, a campaign led by health charities to support people living with longterm health conditions by getting them active. There are still days when I feel tired.
I still have some weakness from my stroke, have to get Marc’s help to lift up a saucepan or pour a cup of tea. But I try to stay active, too – walking, dancing when I can– I’ve even bought a hula hoop! I feel like I owe it to my donor to live a full life.
I don’t know anything about them, but I know that without them, I wouldn’t be here today. It’s been nine years since my transplant, but every day, I take time to place my hand on my chest and feel my heart. I tell my story to people in honour of my donor’s family who have to spend yet another day without their loved one. I’m living my life for them – undefeatable.