Tommy McManus feared dying from heart failure so he never married - now he desperately wants transplant
Downpatrick man Tommy McManus tells Laurence White how suffering a heart attack prior to his 40th birthday has left him relying on medication and cardiac pump. Now, a new study at Queen's University, Belfast backed by the British Heart Foundation NI, is working on a breakthrough.
When Co Down man Tommy McManus noticed a year ago that he was putting on weight, he thought it was just middle-aged spread, but instead it was the first sign of a condition which almost cost him his life in a matter of months.
A machinist, the 40-year-old was working in Aberdeen when he became increasingly concerned about his health. As well as the weight gain, he felt very tired and run-down.
He recalls: "If I bent down, my face would get blood red and I would feel dizzy. I was getting out of breath very easily. I went to a health clinic but the doctors did not seem to know what was wrong with me. It was only when I came across the same doctor twice in a fairly short period of time that she ordered an ECG."
Doctors then quickly discovered that his heartbeat was much faster than it should be and that the weight gain was due to fluid building up in his body.
"I was admitted to the Aberdeen Royal Infirmary and doctors there told me that the build up of fluid would have got worse and worse until all my organs failed," he says.
Kept in hospital for 11 days, Tommy came home to Downpatrick in June for the graduation of his sister Lisa Hagan, who, ironically, had graduated in cardiac care.
"I never made it to her graduation," Tommy says. "I didn't feel up to going to the ceremony and instead stayed at home. I was making myself some lunch but just didn't feel right. I tried to go upstairs to get my phone from the bedroom but collapsed halfway up. I had to crawl the rest of the way to reach the phone and call for an ambulance."
When he was admitted to the Royal Victoria Hospital in Belfast, he had a major heart attack and it was later decided to send him to the Freeman Hospital in Newcastle-upon-Tyne. He was accompanied by his sister.
Tommy says: "Doctors later told her that they were amazed she had accompanied me to Newcastle on her own.
"They were certain that she would be returning alone. They thought I was a goner and that there was nothing they could do for me when I arrived at the Freeman. My blood pressure was so low that they could not do dialysis on me. They had to use traditional diuretics to remove the fluid from my body. I was suffering from kidney and liver failure because of my heart condition and I was at death's door."
Tommy was in the Freeman hospital for 10 weeks, five and a half of those to stabilise him and get him sufficiently well for open heart surgery. He was fitted with a left ventricular assist device - essentially an artificial heart pump.
Inserted into his body, the device is connected by a cable which comes out of his abdomen to a battery pack and a controller. He has to carry that with him at all times.
While the operation saved his life, Tommy's continuing heart failure means that ultimately he needs a heart transplant. At the moment he is trying to build up his strength so that he can be put on the list for a donor organ.
“I am not back to normal health yet. I still get tired going upstairs,” he says.
“I need to be back to the level of health that I was at before I was admitted to hospital in Aberdeen when heart failure really took hold”.
Tommy was born with a congenital heart disease which required an operation in the Royal Victoria Hospital in 1977 when he was two years old.
“I suppose my present condition is the ramifications of the heart defects coming back on me,” he says. “I suppose I always knew something like this would happen. That is one reason why I never married or had kids. I never knew how long I would be around.”
When he wakens each morning, Tommy has to take 13 different tablets and then three more different types of medication later in the day.
He finds that somewhat ironic. “I was always active at work,” he says.
“My job as a machinist which involved lifting lumps of metal kept me reasonably fit. I always did the night shift and worked in several different countries on different continents.
“Now I just have to wait to get on the transplant list and then to get myself a new heart. That could take years.”
How NI research team are working on a cure for this devastating condition
It is estimated that there are 15,100 people living with heart failure in Northern Ireland - out of a total of 225,000 people who have heart disease.
Currently there is no cure for heart failure but Dr David Grieve is a British Heart Foundation Northern Ireland researcher based at Queen's University whose work is focused on solving that problem through hormone and stem cell therapies.
"Heart failure is a serious, chronic condition that tends to gradually get worse over time and the only current cure is a heart transplant," he says.
"However, there have been major advances in treating heart failure. In the Sixties there were no known medicines to improve life expectancy if a person was diagnosed with heart failure. Over the past 50 years British Heart Foundation research, like ours in Belfast, has led to significant advances, such as showing that medicines called ACE inhibitors can improve outcomes in people with heart failure after a heart attack. These medicines are now routinely prescribed for heart failure patients.
"Other BHF-funded colleagues across the UK are currently investigating possible new treatments, such as drugs which improve the way the heart generates energy, and stem cells which can repair damaged tissue, to see if they may help failing hearts.
He adds: "Our research at Queen's University, funded by BHF NI, involves investigating how the heart responds to stresses which ultimately lead to heart failure. This information is helping us to identify potential new treatments and possibly a cure. We are specifically interested in studying the role of certain hormones in preventing gradual damage to the heart and blood vessels which drives the progression of heart failure, and in stem cells, as an exciting way to regenerate the damaged heart and blood vessels.
"Living with severe heart failure is a constant fight for life. Every year, thousands more families across Northern Ireland have to watch the people they love struggle with this devastating condition.
"Our research in Belfast is just one part of the £44m the BHF is investing in heart failure research across the UK. Anyone living with heart failure or who has a loved one with this devastating condition will understand just how crucial it is that we find a cure."
Here to help
Karen McCammon, is British Heart Foundation Northern Ireland's (BHF NI) clinical development co-ordinator and a heart failure specialist nurse. She says: "Our research has helped to revolutionise treatments which means that around 70% of people now survive a heart attack. Therefore far more people are living with damaged hearts - this can then develop into debilitating heart failure, which makes their daily life a struggle.
"We have found patients with heart failure do not have the same access to diagnosis, care and treatment as patients with other long-term conditions such as cancer, even though severe heart failure has a worse prognosis than many types of cancer. Heart failure patients aren't diagnosed quickly enough, and when they are, they do not all see a specialist within two weeks and services are not as co-ordinated as they should be so they are more likely to be admitted to hospital."
Karen adds: "The evidence shows that patients who are seeing specialist heart failure nurses and doctors have a much better prognosis than those who don't. We have fantastic health professionals here who are making a real difference every day to patients and want everyone living with the conditon to have the same access to diagnostic tests, care and treatment.
What causes heart failure and how you recognise the symptoms?
When a person has heart failure, their heart cannot pump blood around the body as well as it needs to. This means the oxygen in the blood cannot reach the parts of the body where it's needed. In severe cases this can leave the person disabled and gasping for breath.
The most common reason is that the heart muscle has been damaged, for example after a heart attack but it can also be caused by other illnesses such as high blood pressure, cardiomyopathy (diseases of the heart muscle), a congenital heart condition or a viral infection of the heart muscle.
swelling - of the feet, ankles, stomach and lower back areas
shortness of breath - when being active or at rest
fatigue - feeling unusually tired or weak
Symptoms occur because the heart does not have enough strength to pump blood all the way round the body efficiently. This can cause fluid to pool in the feet and legs. If this fluid is left unmanaged, it can spread to the stomach area and sit in the lungs causing a shortage of breath.
For information on heart failure and British Heart Foundation research in Belfast and across the UK go tobhf.org.uk.