“Life with a hidden illness” — the journey of a man and his heart
Born with a heart defect, and then suffering from a heart attack aged just 13, Kieran tells us his story about what it was like living with an unpredictable heart, and how things have changed since his life-saving transplant.
**UPDATE — Kieran is now walking the coast of Britain to raise money for the British Heart Foundation. Find out how you can support him on his astonishing journey here.**
My name is Kieran and I was born as a premature non-identical twin in 1970 with a heart defect called transposition of the great arteries (TGA).
As I was a funny shade of blue I was rushed to Westminster Hospital where surgeons performed a balloon septostomy procedure which enabled some oxygenated blood to be circulated and I was soon back with my twin, burping, farting and competing for attention.
Two years later, my Dad died of a brain haemorrhage leaving my Mum, aged just 32, to bring up five children by herself. The following year, I went back to Westminster to have a Mustard procedure. All went smoothly and I left the hospital with a huge scar down my chest and a body now being supplied with plenty of Mustard… I mean, oxygenated blood.
I later asked why it was named the Mustard procedure and a bright spark of a junior doctor told me it was named after Colonel Mustard from Cluedo, and I believed him. We didn’t have Google back then!
I went to school and had a relatively normal childhood apart from being breathless on exercise and not understanding why I wasn’t allowed to do P.E. at school when I was allowed to race around all summer long with my twin brother, playing football and cricket. I discovered my heart’s limitations that way.
Luckily for me, when I had to stop, my brother stopped with me.
My hospital check-ups were fine and the only real scare in my first 12 years came at the age of seven when I contracted endocarditis in 1977. I was in hospital for six weeks over the Christmas period. Everyone was worried at the time but I only have happy memories of this as I had a brand new long word to pronounce and I got a lot more Christmas presents than previous years. Missing my siblings and my Evel Knievel toy were the only downsides to me.
Thankfully for me I had a loving family and plenty of friends both in school and out of school. I was a massive show off as you can see….
This is the Mr Muscles competition at a holiday camp. To entertain the crowd, I chose to pretend the weights were extremely heavy. I groaned and heaved whilst all the other boys picked the bar up with their little fingers. I finished last… serves me right for showing off.
This aching to be the centre of attention continued into early teenage years.
I also fell in love. Not with a girl, or a boy, or a pop star, but with a ZX Spectrum computer.
Here I am in September 1984, aged 13, teaching myself how to write games on it. This is a very special picture for me because it marks the end of a chapter.
A month later on an ordinary day after school, I had a heart attack.
I was about to start an English essay when I had an awful pain in my arm and felt unwell. . I went downstairs to tell mum but by then it had worsened and I also had a tight chest. Thankfully my mum was a nurse and she knew to call an ambulance.
I was in a lot of pain and in my delirium, I heard my mum asking me “Do you have clean underpants on and have you cut your toenails?” Obviously, she did not want to be embarrassed, as they would be taking me to the hospital she worked at, so while we were waiting for the ambulance to arrive, she cut my toenails.
I believe I am the only person in the world to have a heart attack and pedicure at the same time.
The morphine helped at the hospital and I remember asking if I could go home because I had an English essay that was supposed to be handed in the next day. This was not to be and I was transferred to Westminster hospital for a stay of a few weeks whilst tests were carried out. “Debris left over from the operation” was the only explanation given for the heart attack.
At this time I was really miserable, stuck in the same ward, same bay as I was in for my ‘mustard party’ ten years previously and I knew this was going to change everything. I begged my brother to tell everyone at school that I had the flu or something as being a thirteen-year-old boy who’d had a heart attack was not “normal” and I just wanted to fit in. Being a sensitive teenager I didn’t want to be ridiculed either.
“I lay in the hospital bed listening to my Walkman and I realised that life was not going to be the same again and a fear of life being out of my control gradually surfaced...”
I became a celebrity when I returned to school. Students from all years came up to me and asked about the heart attack. One person asked if I was contagious. I became the butt of jokes and my self-esteem plummeted. The attention I had always craved was now negative attention and it completely changed me. I left school with some O-levels and started to become a rebellious teenager.
Up to the age of 21, I had many jobs but got bored with them all; I drank heavily and even started smoking. One day I would be the happiest, most joyful person to be around and the next, I would be so low that I could not bear to be part of normal life.
My teenage years were now a blur of heavy drinking and manic depression.
One morning aged 21, unemployed, depressed and sat at the dining table smoking endless cigarettes, I suddenly had a huge throbbing headache and felt quite weak. As I got off my seat to get some paracetamol I fell awkwardly against the wall as my legs gave way. I was trying to speak but all I could hear was gibberish coming out of my mouth.
My lip had dropped and my right arm and hand were numb and I was rushed to hospital where they informed me that I’d had a TIA. A mini-stroke. Everything went back to normal quickly and I was released two hours later. I had a repeat performance a month later and afterwards, my consultant at the Brompton, Dr Jane Somerville, brusquely said:
“Stop drinking, stop smoking, sort yourself out or you will die”
…and then promptly put me on rat poison (warfarin).
Everyone thought I would listen to this scary consultant, but I didn’t. I was depressed and watched all my friends from school get nice jobs, girlfriends, wives, and even children, but nothing motivated me. The turmoil in my head of how and when to tell a prospective girlfriend about my heart always ran alongside my incredibly low self-esteem. Only when I was drunk did I feel any form of confidence. I had started to get abnormal heart rhythms, or arrhythmias, around this time and this had pushed me further into self-pity, anxiety and even suicidal thoughts.
This period was the lowest point of my life.
But, with the support from my family and friends, I turned my life around within two years. I passed my driving test, got a job as a cleaner and learnt how to program PC’s, which led to becoming a Computer Programmer for my elder brother’s computer business. I saved for a deposit on a house and in that time my self-esteem gradually improved.
A chance meeting
I hadn’t felt like this since before the heart attack and it led me to do something for the first time — I asked a girl that I had met at a party for her number. She gave it to me but said “We live 50 miles away from each other — it will never work”. She lived in Surrey and I was determined to prove her wrong. As I was living in Essex, it was to be an M25 romance.
Our first date was going so well that after 15 minutes of chatting I told her I wanted to do a parachute jump, and then five minutes later I just blurted it out. “I have a dodgy ticker by the way. I mean it is under control, I just have to take a few tablets — it’s not as if I am going to keel over at any moment. I was born with a heart defect and I had an operation when I was younger. I’m fine now.”
She accepted it as though I had just told her my favourite chocolate bar was a Toffee Crisp. In fact, she told me afterwards that she was more worried about the parachute jump! I gave up smoking soon after meeting her and I now started to look after myself.
During this epic rise from depression to satisfaction, the new funky rhythms that my heart produced became more and more frequent and grew to be a real concern. After many attempts with a 24 hour tape, the rhythms were identified as atrial fibrillation (AF) and supraventricular tachycardia (SVT).
Over the next few years, I was able to carry on working without too many problems. However, the arrhythmias increased in volume and intensity, and I began to feel more and more unfit. By the time I had reached 30, my heart failure was worsening and my consultant was becoming increasingly concerned. Between the ages of 30 and 34, I was hospitalised several times with AF and SVT and was even cardioverted on one occasion.
Unfortunately, my check-up in January 2005 revealed the true extent of my deterioration and when I presented my consultant with a list of all the arrhythmias I was having he told me that he thought I should be fitted with an internal defibrillator, or implantable cardioverter defibrillator (ICD) as I was now at risk of Sudden Arrhythmic Death Syndrome (SADS).
My right ventricle was severely dilated and he further explained that there was little more that could be done as I was already on the highest doses of the best medication and further surgery was far too risky. I was in end stage heart failure and I would continue to deteriorate.
Heart transplantation was the only option.
I remember walking out of the consultant’s room in a daze. I hadn’t realised things were as bad as he had painted it. Over the next few months, I would have transplant lead-up tests in case I was to go downhill very quickly.
On a scorching day on the 16th of July 2005, seven years after meeting, my (now) wife and I tied the knot, and then later that year I had a defibrillator fitted. In the same year, we attended our first GUCH (grown up congenital heart disease) conference (now known as the Somerville Foundation) and I became an active member on their forums.
I can’t tell you how much this helped both of us. For the first time in my life I met people like me, and my wife met partners of people like me. We also joined the GUCH walking club. It was so inspiring to walk with other congenital heart disease (CHD) patients. The GUCH’s were all sensible but achieved so much, and this got me focusing on what I could do rather than what I couldn’t do; a very important lesson for me to follow.
The following year, we planned a charity event that we called The Coastal Challenge. We drove 4000 miles around the coast of Britain to raise awareness of GUCH, CHD, Blood & Organ donation and to raise money for GUCH charity. It was a great success, mainly, I must admit, to the organisational skills of my wife.
“I have the crazy ideas — she makes them happen. I believe this is called teamwork.”
Between 2006 and 2008, I deteriorated very quickly.
My life was now in a state of limbo. I was too ill to be made better but too well for a transplant due to the shortage of organs and I remember a conversation with my best mate where I said that as each day went by, I actually hoped to get worse so that I stood a chance of a new heart. It was a strange time; the carrot of a better quality of life was dangled in front of me, in the form of a transplant
“Who wants to become more ill? “
I had two more very scary arrhythmias during that time, one of which ended up with me being cardioverted due to a failure in the defibrillator settings. The last one was a narrow escape from a cardiac arrest as I had gone into VT. By the summer of 2007, I was referred to Papworth Hospital for a transplant assessment.
Three months later, aged 37, I had a three day transplant assessment at Papworth where I had many tests to check my suitability for transplantation. My new consultant informed me that I had a 50/50 chance of surviving five years without a transplant and that my quality of life would decrease further too. The test results showed that thankfully I was a suitable candidate. However, by now, I was also in kidney failure so I would have to have a kidney assessment to see if they would cope with the barrage of anti-rejection medication. The kidney specialist confirmed that I should be able to cope with the medication and so I finally went on the transplant list in July 2008.
My quality of life by now was very poor; I would have to sit down immediately after showering to get my breath back, I used a mobility scooter to get to the shops and doctors and my wife carried my bags everywhere we went.
In fact, the following story sums up life with a hidden illness. Determined as we were to carry on with normal life and not wait for ‘the call’, we decided to move house to be nearer Papworth. We viewed a house and the owner, a 50 year old male, showed us out to the garden. There was a 10ft tall hedge at the back of the garden and I turned to my wife and said without thinking, “I don’t think you’d be able to get up there and trim that hedge.” The man shot me a look that said “Why are you sending your wife up on a ladder to cut the hedge? You do it, you lazy ****”. I was going to explain my remark but to be honest I was too tired from having taken my shoes on and off to protect his carpets, so I let it go.
This was how our lives were. My wife did almost everything for me, bar washing and dressing me. To me the world had sped up and I was exhausted, both mentally and physically, just trying to keep up.
“My wife carried my bags everywhere we went.”
On the 31st July 2009 at six o’clock in the morning, after a year on the list, we received the call from Papworth asking me to come in — on the day we had planned to move house. By 12 noon, the transplant co-ordinator popped her head round the curtain surrounding my bed and said:
We said our goodbyes there, and then off I went for six hours of surgery whilst my wife, assisted by my sister and brother in law, moved the last of the boxes.
My first memory of my new heartbeat was how powerful it was.
It seemed really loud but perfectly in time. I would listen to it for hours expecting an extra beat or a run of beats but it was like a drum machine; 60 bpm constantly.
Apparently, when I came round in ICU, I turned to my wife and said, “I’m hungry, what’s for dinner?” She looked at all the tubes and said, “Well you got some red liquid and some lovely white liquid.”
I replied, “Oh that sounds nice” and promptly fell back to sleep.
Another time, I had turned to my brother in law with a real sad boyish look and said “I don’t feel very well” to which he burst out laughing.
“You’ve just had a heart transplant — that’ll be why!”
I was transferred to the ward after a few days and apart from my lung needing inflating everything was going to plan. Gradually each day I became free of all the wires and machines. I visited their gym every day and was now able to walk around the beautiful lake.
The transplant co-ordinator had told me that my donor had been a woman in her 50’s who had died of a brain haemorrhage. I thought every day about the complete strangeness of the situation: her family devastated while everyone I knew was overjoyed.
It is the most amazing gift you can give when leaving this world.
Life with my new heart
I left Papworth after just 17 days with a bag of medication the size of my torso and went home to start my new life in my new house. The first target for me to aim for was a friend’s ‘80s’ themed party six weeks after my transplant. I wanted to dance and I wanted to do so, as Lionel Richie says “All Night Long”.
My recovery continued and so, with my wife as a Rubik’s cube and me with a mullet and Walkman, we headed to the party and danced until 3am. It was the most amazing feeling! One other thing I started to love doing at that time was overtaking people whilst out walking. I hadn’t been able to do that for many years.
Before the transplant, people often overtook me who were twice my age.
I had regular biopsies to check for rejection; initially weekly, then fortnightly. These regular check-ups went very well and my consultants at Papworth were pleased with my progress.
However, after three months, I received a call from one of the nurses explaining that the latest biopsy I’d had showed abnormal results, and that my body was starting to reject the new heart. We had been told that it was quite normal for a transplanted heart to be rejected but when it actually happened it was still a big shock.
My steroids were massively increased over the next two weeks and another biopsy was booked in. People react differently to the side effects of steroids; some overeat, but I didn’t seem to have that problem. Mood swings were my specialty for those two weeks and I was tutting, quick-tempered, shrugging my shoulders and being generally grumpy. My wife summed up the period as like living with a stroppy teenager. I seemed to have no control over my new character and luckily after two weeks, the biopsy came back negative and the steroids were reduced and eventually the real Kieran returned again.
My fitness increased as the weeks went on so much so that I decided to start running. You cannot believe the feeling when I first set off down my road; I was grinning like a dog hanging out of a car window. Being able to project myself at a sprint was incredible. I hadn’t been able to do that for over twenty years but I soon stopped though as I tore muscles and pulled things I didn’t know existed. Maybe I would have to build up to running but the seed was now sown.
One of the main differences was having enough energy each day. I no longer had to plan each day to conserve energy. Housework was a delight, it was a workout and being out of breath was now a good thing. At this time, I decided to write a letter to my donor’s family to express my gratitude and my transplant coordinator passed this onto them for me.
A bout of Cytomegalovirus (CMV) stopped me in my tracks for a while but I got over this hurdle and nine months after transplant, I started looking for a new job soon becoming a haematology lab assistant at Addenbrooke’s Hospital in Cambridge. At last, I could find out what happens after having a blood test, especially with the amount of blood I have had analysed over the years.
This photo was particularly poignant for me as whilst in heart failure I had managed only a very slow, short walk up part of Mam Tor with the GUCH Walking Club.
With my new heart I positively raced up the entire hill from bottom to top.
My first full year post transplant had been filled with goals, objectives, achievements but most of all it had been fun. Life had become fun again, just like when I was a child and everything seemed possible now.
Everything seemed possible now.
In October, I was very lucky to get a place in the 2012 London Marathon ballot on my first attempt and my focus now turned to running as I now had only 7 months to go from beginner to marathon runner. Well, I love a challenge!
When they remove your heart in transplantation, the new heart doesn’t talk to the brain in the same way as the old one did and I had been advised that to avoid injury I should do a gentle warm up routine to get the adrenaline flowing which would increase the heart rate ready for exercise. Therefore, before I attempted to start running, I would spend ten minutes in my house disco dancing in running gear which was, erm, — an interesting sight! The first month of proper running was exhilarating but also painful and exhausting.
I was out in all weathers and in fact, I liked being the nutter on his own in pouring rain, or covered in snow. The London Marathon is tough, not only because it is 26 miles but you are training throughout the unpredictable British winter.
You cannot imagine the delight when I could run for 20 whole minutes, then 3 miles, then 5 miles. I must have been the only runner in Cambridge to have a grin on his face whatever the weather! I had found a new love and the feeling of success after every run became addictive.
Finally, I could do something that others could do, but I was pushing myself further than ever before.
On marathon day, I said goodbye to my wife at Greenwich, put my bag in the trailer and went to the last pen. I dawdled towards the start line surrounded by thousands of other runners. They had all gone through the same pain and struggles of training that I had done, and here we all were:
The big day had arrived.
Whatever was going to happen during the event, I was on the start line of the London Marathon, which was an achievement in itself, and I could never have done it without my donor. As I crossed the start line I looked up and said ‘thank you’, then started jogging.
“Come on Kieran!” I heard strangers scream for the next six hours.
It rained constantly from 20 miles in and I was getting colder and colder as I got slower and slower. By the time I had reached Buckingham Palace, I was a shivering, injured, miserable, drowned rat and glad it was almost over, which was completely different to how I dreamt it would be.
But I finished, and I got the medal, and afterwards felt that euphoria when I remembered that just 996 days earlier, I could hardly walk to the end of the road.
2012 was a magical year. I ran the London 10K soon after the marathon, thus completing a 10K, a half marathon and marathon distances. It was my personal triple crown and I was now a long distance runner.
The Olympics were wonderful to watch as 5 years previously I was given a 50/50 chance of being alive to see it.
To round off the year, I wanted to do another challenge. I had mastered running, and now I wanted to fly. In September I strapped myself to a professional and leapt out of a plane at 10,000 ft.
Everyone else in the aeroplane seemed nervous about it but I couldn’t wait to do it.
As I sat on the edge of the door I thought to myself, “All these years I wanted to be normal — is this normal?”
Once the parachute had opened my instructor said to me, “How’s the heart?” I replied, “It’s beating perfectly”, as it has done ever since I first received it.
Since then I have completed two half marathons in Cambridge and I ran the London Marathon again in 2014, this time an hour quicker at just over five hours, in glorious sunshine, hot on the heels of Mo Farah.
Living Life to the Full
Being alive at 45 was something I never thought would happen. I had subconsciously set a goal of matching the age of my father when he died. He passed away aged 38. I was 37 and a half when the kindness of a stranger gave me the gift of life. I received a letter back from my donor’s family. It was filled with some wonderful details and stories, which I feel very privileged to have learnt. My donor was in her fifties and was fit and healthy but then out of the blue, tragically, she died of a brain haemorrhage.
I guess I am determined to live life to the full (but without being reckless), not just in her memory but for all the people that have helped along the way; my friends and family obviously, but also to the incredible NHS, without which, I literally wouldn’t be able to tell this story.
Life after transplantation hasn’t all been about living life to the max and doing crazy things. I do still suffer from depression from time to time, but I manage this much better these days. I look after myself, I don’t smoke, I rarely drink and I try to eat healthily. I attend all my appointments and religiously take my medication at the correct times.
It is about getting this balance right. In a way, it helps that so much was taken away from me when I was poorly — because now it’s about appreciating the simple things too. So something like being able to stand up whilst washing up becomes surprisingly enjoyable. These little things in life really do become pleasurable. I love the fact that I can stay up late laughing and joking with my friends whereas before I would have needed an afternoon nap if I was going to stay up past 8pm.
I love the fact that I can help people now and not need help myself.
I love the fact that I can carry my own bags, which means that I can travel so much more easily than before.
I love the fact that I can carry my own bags and I love the fact that lifting a rucksack on my back is now not only possible but that I can walk for miles with it on too, which means that my wife and I can travel so much more easily than before.
I cannot tell you how good it is to always have enough energy for whatever it is I want to do. Ultimately, transplantation has given me the opportunity to be myself once more.
But my story hasn’t quite finished yet. Although I couldn’t donate my old heart to a person in need, it has proved to be invaluable after I donated it for medical research. BHF-funded researcher Dr Sonya Babu-Narayan of Imperial College London has been studying my heart for the past eight years as part of her research looking at ways to predict future heart problems in babies born with congenital heart defects.
I’ll be going to Royal Brompton Hospital, where Dr Babu-Narayan is based, to see my old heart for the first time and learn more about the research findings to which it has contributed.
**Kieran is now walking the coast of Britain to raise money for the British Heart Foundation. Find out how you can support him on his astonishing journey here.**