My Message Of Hope To Heart Patients
New research from the British Heart Foundation has shown that an estimated 620,000 people in the United Kingdom have a faulty gene that puts them at risk of developing coronary heart disease or sudden death.
I have first-hand experience of living with a faulty heart, and the profound impact it has on the people closest to you.
I was identified as having a heart defect when I was eight years old. My mother decided to take out an insurance policy on me and for that you needed a medical. She took me for a totally standard procedure with the insurance company doctor, which was expected to be little more than a formality, but it wasn’t.
The doctor took the stethoscope away from me, looked at it and then started listening to my chest again. I was aware of a slight change in his expression: this was not going to plan. He listened once more and this time there could be no doubting it: “This chap has a missing beat in his heart,” he told my mother.
What followed was a lifetime of health problems, mainly prompted by a leaky valve in the heart which had been discovered at the meeting with the insurance company’s doctor. In 1996, my fragile but hardworking heart literally began to break — and it was to do so twice over in the coming years, both physically and emotionally.
In a horrible coincidence, it had emerged that my brother Rajiv also had serious heart problems. We were both desperately concerned about each other and paradoxically that was not having a good impact on our own individual states of health. Throughout my life, the one constant that was always there was my brother Rajiv. In 1997 he died while he was waiting for a new heart.
I write this more than eighteen years after his death and yet it is the one ache in my heart that will never go away. Certainly, I firmly believe that his death was one of the reasons my own heart finally gave up the ghost, and in 1998, my heart reached breaking point.
Both sides of my heart were failing, meaning I had a lot of fluid in my belly, which made the operation harder. I was a bit malnourished, the pressures in my lungs were very, very high and the pressure in the rest of my body was very low, which is the worst combination possible. We had reached a total crisis point and if the operation had not been done immediately (and successfully) I would have died. I probably had a couple of hundred beats of the heart left.
And now, eighteen years later, I am one of the longest-surviving heart transplant patients in the world. A 20-year-old person I will never know not only gave me a new heart: they gave me a new life. In many ways my quality of life is better now than it was in my late forties, when I was feeling lethargic, and constantly prone to infections as my health and my old heart gradually started to break down.
That my heart problems might have come down to a congenital defect has become of increasing importance to my family in recent years. It seems that I have a mutation in the titin gene, which has been linked to heart failure and it appears that Rajiv might have had the same thing too.
As a matter of routine, my children have all been tested, and in 2014 it emerged that my younger son also has the mutation. This does not mean that he will develop heart disease, but it does mean that he might. The intense shock I felt on hearing this resulted in some sleepless nights, but he has resisted the idea of taking medication as he says it will make him feel abnormal, and is now opting for lifestyle changes instead.
He was concerned about his family’s reaction as his wife was pregnant with their second child at the time. He has since changed the food he eats: avoiding the wrong kind of oils, eating red meat only once a week and he does not drink spirits.
He now feels that it is a blessing to have found out about his condition, and he was adamant that I should tell his story to the wider world. His positivity is an object lesson in how to live your life.
I have written a book about my own experiences to show that there is life beyond the operating table. I have met inspirational people who have had a transplant and whose attitude and ambition has been breath taking, including a woman running a marathon, but equally I have met people who threw away the opportunities they had been given by adopting a negative and pessimistic attitude.
Once I was in a room with six other transplant patients and they were saying that they didn’t want to do anything to protect their health as they didn’t expect to live for very long. One man refused to give up junk food saying, ‘Why should I? I’m going to die anyway’.
We’re all going to die one day. But if you are fortunate enough to receive top quality care, as I did, then you have every chance of making it through.
Mine is a message of hope. Surrounded by a loving family, cherished by all of them, one thing is quite clear. If your heart has a reason to keep beating, it will.
My hope is that stories like mine can inspire more potential donors. The hearts belonging to the family of my donor must have been shattered by their loss and yet they rose above their grief to say yes to the procedure that gave me life. My heart, my new heart, swells with a profound emotion at that thought.
Originally published at https://www.huffingtonpost.co.uk on February 7, 2017.