"We were in bed watching TV," Jason said, "B way lying on my chest. She said she could feel my heart beating and that it was stopping and starting. She said I should go to the doctor to get it checked out."
After a series of inconclusive tests, Jason was called to the hospital to pick up some results. He and fiancé Bernadette – or B as he calls her – headed to the William Harvey together during Jason's lunch break from his work as a drainage consultant with HNC Mechanical Engineering in Dover.
Jason said: "My doctor called me in. He sat me down and said after looking at my scan they had diagnosed a condition called dilated cardiomyopathy.
"He said it meant the left side of my heart was swollen making it hard for the chamber to pump blood around my body."
It was then the medic uttered the words: "Jason, it's basically a form of sudden death syndrome. You must be admitted to hospital straight away."
Jason was stunned. He said: "I was in shock I think because I remember cracking a joke.
"The doctor said I would have to ring work and tell them I wasn't going back as I had to be admitted to the clinical decision unit."
The hospital wanted to do more tests on Jason and he was kept in for four days while medics tried to establish more about what was wrong with him and why he had developed the potentially fatal condition.
Jason said the seriousness of what was happening only really hit him later. On his first night in hospital, he woke up to find that the person who had been in the bed next to him had been taken to resuscitation.
On the third day, the doctors came in to talk to Jason. They drew the curtains around his bed and then the tears began.
He said: "I was just thinking about B. We had a good future together. We had bought a house and we had just booked our wedding and all of a sudden someone told me that I could just drop down dead at any time."
After four days in hospital, Jason was sent home. With no history of this type of heart problem in the family and no obvious cause like drink or drugs problems the diagnosis was idiopathic – basically they did not know what had caused it.
It may have been a childhood illness – something as simple as the flu – that shocked his heart into reacting as it did, causing his body to begin to reject his heart, but Jason will never know.
He was sent home for eight weeks' rest with beta-blockers and Ace inhibitors which make the heart slow down and strengthen the muscles and was told he had a 50 per cent chance of reacting to the drugs positively.
When he got home he was again shocked into facing the reality of his condition.
He said: "I typed dilated cardiomyopathy into a search engine and all that came up were memorial boards and obituaries. It makes you think – are they lying to me? Am I going to die?"
For months Jason, how 25, was not able to do the things he enjoyed. Before his condition was diagnosed he played five-a-side football three times a week, practiced ju jitsu, swam, cycled and drummed in a band: now he was told he couldn't even stand up without feeling dizzy as a result of the drugs he had to take to keep him alive.
The chances of the condition being diagnosed were one in a million. Most diagnoses of sudden death syndrome are made in post mortems.
As doctors have frequently told Jason "age is on his side" and he has certainly done a lot in the two years since he was told of his condition.
He and 28-year-old Bernadette, a former P&O cruises worker, married just over a year ago on a beach in Barbados, they have redecorated the house they bought in Folkestone before Jason went into hospital, and they now have a 10-month-old baby boy.
When little Morgan was born on September 28, 2005, Jason was still under orders to take it easy.
"He said: "In the back of my mind I was thinking 'who is going to teach him to play football?' and 'who is going to take him for his first pint in the pub when he is older?' but they are saying now that my heart is looking stronger and I should be able to live a normal length of life."
Jason had to give up drumming as it put too much pressure on his heart but has learned the bass and still plays with his band The Might Hush – but it is the little things that bring a twinkle to his eye.
"At my last appointment I was told I could go on rollercoaster's again," he said.
"Actually, we went to Chessington a few days before they told me it would be okay and I went on the Vampire ride.
"I shouldn't have done it really but I kept a heart monitor on and I was fine."
WHAT IS DILATED CARDIOMYOPATHY?
The main pumping chambers of the blood are dilated and contract badly.
There is a low output of blood from the heart.
There is a build-up of fluid behind the left side of the heart leaving congestion in the lungs and breathlessness.
Occasionally the right side of the heart is involved with fluid accumulating in the body tissues.
WHAT CAUSES DILATED CARDIOMYOPATHY?
The cause remains uncertain but it is probable that there are many different factors which are important. These include viral infection. Usually viral infections are self-limiting illnesses as the body's defence mechanism is able to control the virus, prevent it from spreading and kill it.
Enteroviruses are common causes of viral infections often presenting with flu like symptoms.
One of the enteroviruses, CoxsackieB, can affect the heart but does not usually cause permanent damage. In some instances, however, the evidence suggest that the virus may either persist within the heart or trigger an auto immune process that continues to damage the heart.
Symptoms:
These will depend on the stage of the condition but can include:
Shortness of breath.
Lack of energy.
Ankle swelling.
Chest pain.
Arrhythmias are when the heart can either beat too rapidly or too slowly sometimes causing dizziness or blackouts.
How is dilated cardiomyopathy diagnosed?
Diagnoses are almost always made after a death in the family and other family members are checked as a result.
On a careful history of physical examination for symptoms and/or abnormalities.
An electrocardiogram is often performed to look for damage to the heart.
Information from deputy chief executive Stephen Cox at charity CRY (Cardiac Risk in the Young) which fundraises for, researches into and tries to raise awareness of sudden death syndrome.
TIME LINE
January 20004 – Jason's fiancé Bernadette encourages him to go to the doctor's after hearing his heart beat.
February 2004 – Various tests and check ups at Jason's doctor's surgery prove inconclusive.
March 2004 – A nurse at the surgery gives Jason an ECG which proves inconclusive.
April 2004 – Jason is sent to the William Harvey where he is given a heart rate monitor to wear for a week, during this time Jason plays a gig at the Stripes Clu7b.
May 2004 – Jason is given an echo-cardiogram and a week later is recalled to hospital where his doctor tells him he has dilated cardiomyopathy and he will have to stay in hospital for more tests to find out why he has developed it. The results are inconclusive. Jason is prescribed beta-blockers and Ace inhibitors and is discharged with instructions to rest for eight weeks.
July 2004 – Jason returns to work as a drainage designer for a firm in Dover.
August 2004 – Jason is told the swollen left side of his heart has got a bit smaller and begins drumming again.
October 2004 – Jason is given the all-clear to fly to Barbados to marry Bernadette.
September 2005 – Baby Morgan is born.
Today – At the last check-up measuring the size of his heart, doctors said they were pleased with the progress.
In a healthy heart 75 per cent of the left chamber is used to pump blood around the body, when Jason was diagnosed just 22 per cent was being but now he has reached about 55 per cent.
