Jersey charity, The Love Hearts Appeal, has today launched a campaign to fund the first stage of a study which aims to reduce the number of youngsters who develop heart disease following the procedure.
Hospital consultant Neil MacLachlan – who set up the charity with his family after his daughter Catherine had a heart transplant when she was 15 – said that he hoped Islanders would back their latest drive as it could lead to better ways of caring for young patients after heart transplant surgery.
‘I think it would be brilliant if Jersey could have its name attached to an amazing bit of research. It would be very prestigious.’
As part of its drive to raise funds for its latest campaign, the charity has also today unveiled a pin badge that has been created in partnership with the JEP. The badges, costing £2 with all profits going to the charity, are now on sale at both main entrances of the Hospital, and other outlets (details below).
Miss MachLaclan (24) said: ‘I think the badge is a great idea. It ties in really well with the JEP being at the heart of the Island life.
‘Having the pin badge is incredible and a really proud moment for everyone who has been involved in the charity.’
The charity, which was set up in 2012, has previously raised £104,000 to fund a new cardiac intensive care cubicle at London’s Great Ormond Street Hospital – where Miss MacLachlan underwent her lifesaving treatment.
It has also campaigned to boost the numbers of Islanders signed up to the NHS donor register, as currently only around 10 per cent of the population have signed up and it was involved with enabling Islanders to sign up to the life-saving list when applying for a driving licence.
The charity now hopes to fund research by Great Ormond Street and King’s College London to reduce the number of children who develop coronary artery disease – where a waxy substance called plaque can build up in the coronary arteries in the heart – following a heart transplant.
Research will focus on whether the body’s own white blood cells, which play a key role in controlling the immune system, could reduce the inflammation that can occur in the coronary arteries.
The team, led by Dr Mike Burch and Professor Giovanna Lombardi, intends to investigate the effects of removing the thymus – a pea-sized organ where a type of white blood cells known as T-regs develop – during a heart transplant.
Anyone wishing to donate directly to the cause can log on to the website, where they can follow the relevant link.
They believe that removing the thymus may leave children with very low levels of T regs and that this may be the reason why youngsters are vulnerable to the life-threatening condition coronary allograft vasculopathy – an accelerated form of coronary artery disease – following heart transplantation.
Dr MacLachlan said that if the team were able to provide a link between thymus removal and CAV, it may open up new ways of caring for children.
He added: ‘In the future, children who have had their thymus removed during a heart transplant may be given T-reg cells to prevent the onset of CAV – Dr Burch’s team are already looking at how this could be done safely and effectively.
‘These studies are in their early stages, currently confined to testing in the lab, But if the team are successful, it could lead to new and better ways of caring for young patients after heart transplant surgery so that more children can grow up to lead healthy, happy lives.’
AT 15, Catherine MacLachlan was a typical teenager, worried about her upcoming GCSEs and looking forward to her 16th birthday. But when her heart started to beat abnormally fast and was found to be much bigger than it was supposed to be, she was told that she would need a heart transplant within years, if not months.
Just weeks later, Catherine was on life support and her parents were told that their youngest child would not last another 24 hours without a new heart.
Against the odds, a donor heart was found a few hours later and Catherine is now a healthy 24-year-old who is determined to make the most of the second chance that she has been given. To that end, she has set up the charity The Love Hearts Appeal with her father Neil, a consultant gynaecologist at Jersey’s General Hospital, and her mother Jo, who runs a nursing company. The charity aims to raise awareness about the importance of organ donation as well as funds for Great Ormond Street Hospital – the hospital which saved her life.
Now about to embark on a Master’s degree in speech and language therapy at University College London, Catherine says she will
always be thankful to the donor and the donor’s family who gave her her new heart.
‘It has changed how I live my life,’ she said. ‘Without wanting to sound over-dramatic, it affects you so much when suddenly you get the idea that you might not live and you think how that would change the lives of everyone around you.
‘When you are given another chance, you make the most of it. I don’t take it for granted for one second. I feel very thankful to be here.’
A fit and healthy youngster, the former JCG pupil – who jokingly says she has no idea why her brother Hamish (28) is studying to by cardiologist – became ill unexpectedly.
‘It came about very quickly,’ Catherine, who also has a sister, Sophie (27), explained. ‘I was a normal teenager about to do my GCSEs. On Easter Sunday I realised that my heart was beating abnormally fast. I thought I’d better mention it to mum and dad. They took me to hospital for a check-up, and it was after I had an X-Ray that they saw my heart was bigger than it should be.’
Due to the seriousness of her condition, Catherine was airlifted to London’s Great Ormond Street Hospital, where doctors told her that she had dilated cardiomyopathy – a disease of the heart muscle – and would need a heart transplant.
‘When I was airlifted out I was more worried about my Spanish oral exam and missing out on my friend’s birthday party,’ Catherine, who lives in Rozel, said. ‘I think I was in denial. It hadn’t sunk in at all. When I was told I needed a transplant, it sounded so foreign.
‘I was put on some drugs to prolong the time on my current heart and I was sent home and told to take it easy.’
But weeks later, when her condition deteriorated, Catherine was transferred back to Great Ormond Street and the doctors decided to fit her with a pacemaker to control any abnormal heart rhythms until a donor heart could be found.
‘It was during that operation that they could not restart my heart,’ Catherine said. ‘I was put on life support. I was on so many drugs. After ten days my kidneys started to give up and different parts of my body started to shut down.
‘My parents were told that by the next day I would be out of time. Miraculously, a couple of hours after that discussion they were told a heart had been found.’
On 18 June 2006, two weeks after her operation to fit her pacemaker, Catherine awoke unaware that she had undergone a heart transplant.
‘I woke up and I was surrounded by wires and screens,’ she said. ‘My parents were told that I had woken up properly. They came in and calmly said that I had had an operation. They told me: “This is a new chance”.’
Following her operation, Catherine had to undergo weeks of rehabilitation to rebuild her strength. She said: ‘I never remember being in any large amount of pain. Although the facilities were cramped and dark, all the nurses were fantastic. I had to have physio. I had to learn to walk again. It’s amazing how quickly you lose muscles once you don’t use them.
‘At first just walking to the other side of the room I would be exhausted. The exercises were slowly increased. The test to be allowed home was to see if I could do the stairs.’
In mid-August she was told by medics that she was strong enough to be discharged. ‘It was overwhelming,’ said Catherine who studied Spanish and Italian at Durham University. ‘I couldn’t wait to get back to my friends and neighbours. It was the best feeling landing in Jersey. My closest friends were waiting for me. It was such a relief to see them and think that things would go back to normal. I had my 16th birthday at the end of August. We had a big celebration. It was amazing to have everyone together. I was feeling so much better by then. I could have a dance and one drink.’
Catherine, who undergoes two annual checks on her heart at Papworth Hospital in Oxford, is now able to live a normal, healthy life, although she will always need to take medication. She is currently on two types of drugs – one to prevent her body from rejecting the donor heart and another to keep her cholesterol level low. She may also need to undergo another transplant in the future because the life expectancy of a donor organ varies.
Catherine said: ‘At the moment, the longest time someone has survived on a donor heart is about 25 years. It’s increasing every year because of research and improving drugs. At the moment I would need another one in, who knows – 15 to 20 years’ time?’
Determined to improve the odds for other families who have to go through the same ordeal as them, the MacLachlan family set up The Love Heart Appeal in February 2012. So far, it has raised £104,000 for a new cardiac intensive care cubicle at Great Ormond Street in London and has now set its sights on fundraising a research project so that more children who undergo a heart transplant can grow up to lead healthy lives.
The charity has also campaigned to get more Islanders to sign up to the donor register through measures such as asking people if they would be willing to be a donor when they apply for a driving licence.
