Living with an inherited heart condition: Lucy's story
Inheriting a heart condition raises many questions, but support is available. Senior Cardiac Nurse Emily Reeve speaks to Lucy White about the care she’s received.
Lucy White had no idea that a heart condition ran in her family until her brother Jack collapsed at home nine years ago.
Jack, then aged 18, was diagnosed with dilated cardiomyopathy (DCM). This is a condition where your heart muscle becomes enlarged, weak and can’t pump blood around your body as efficiently. There aren’t always symptoms, but Jack’s DCM was causing potentially life-threatening heart rhythms, so he was fitted with an ICD to reduce his risk of sudden death.
For a long time I hated my diagnosis. I felt like ‘why us?’
DCM can be inherited, so doctors wanted to test the whole family. Lucy had an echocardiogram and a cardiac MRI scan. She was diagnosed with DCM, aged 22.
“This all happened just a few weeks after Jack was taken into hospital,” says Lucy. “It felt like a real shock. For a long time I hated my diagnosis. I felt like ‘why us?’”
What are inherited heart conditions?
Making lifestyle changes
Lucy says her diagnosis changed her life. She went from being a keen runner, who had completed marathons, to needing to be closely monitored and supported through her exercise regime. She was also told it would be safer to stop drinking alcohol. Lucy has now found a less stressful job and adopted a healthier diet. She’s still able to be active, even if not at the same level as before – for example, she’s completed a marathon since her diagnosis, but walking rather than running, and after thorough checks from her medical team.
Lucy and her family were treated at the specialist service for inherited heart conditions (also known as inherited cardiac conditions or ICCs) at the Royal Brompton Hospital in London. “The team have looked after us ever since Jack’s diagnosis and I think we are very lucky to have been referred to them,” she says.
Genetic testing and extra support during pregnancy
The BHF has helped give Lucy’s family peace of mind. “In the last couple of years we have been told that we don’t all have the condition,” she says. “Thanks to research funded by the BHF, we had genetic testing and discovered that my mother, me and my brother Jack have the faulty gene, but my dad and my other brother Toby don’t. The team checked our whole extended family – aunties, uncles, cousins. That made everyone feel at ease.”
Lucy got married in August 2014 and she and husband Ben took advice from the team at the Royal Brompton before planning a family. They are now expecting their first child. “When I talked to the team about pregnancy, we discussed the risks for my heart and my baby,” she says. “But everything is going well so far and although I was afraid before, I realised I don’t need to be. I know Ben worries about me a lot and he’s been really supportive.”
Due to the inheritance pattern of the condition, there is a 50:50 chance the baby will have it
Lucy is getting extra care during her pregnancy. “The team are monitoring me closely, doing regular echos and scans of the baby’s heart,” she says. “Due to the inheritance pattern of the condition, there is a 50:50 chance the baby will have it. But I feel like our baby will have a great chance under such amazing care.
“It’s taken a while, but now I feel like I accept my condition. Having a heart condition doesn’t have to be scary. The research has come on so much in the eight years I’ve known about it and I know there will be even more improvements if funding continues.”
She wants to encourage anyone with an inherited heart condition to make use of the support from their specialist clinic, and to ask for a referral from a GP if they aren’t offered one. “The care at the ICC service at the Brompton has made me feel safe and less scared,” says Lucy. “Their support and BHF research has changed my life.”
The free BHF Genetic Information Service can provide information and help facilitate a GP referral to a specialist clinic. Call 0300 456 8383 or order our free booklets on inherited heart conditions.