Diagnosed with dilated cardiomyopathy (DCM) over 30 years ago, Lillian shares her journey of living life to the fullest despite heart complications and changing diagnoses. After initially being told the condition was likely viral, new genetic testing revealed a hereditary form—Arrhythmogenic Left Ventricular Cardiomyopathy—raising concerns for her children and granddaughter. Throughout, Lillian defied expectations, traveling, power walking, paragliding, and even abseiling as Mayoress. While anxiety is ever-present, especially for her family’s health, her story is one of resilience and making the most of every day.
Lillian offered to share her experience with us at the recent Greater Manchester ICD Support Group.
I was diagnosed with DCM (Dilated cardiomyopathy) some 30+ years ago, discovered after I had had an induction at a gym where they found I had high blood pressure and sent me to my GP, who in turn found I had a ‘problem’ with my heart . He referred me to Cardiology at NMGH, who subsequently referred me to Wythenshawe, where I have attended on a regular basis ever since.
After I had been diagnosed, sadly my brother died from a ‘heart attack’ aged only 37; this didn’t change my treatment, apart from having to have an Angiogram to check my arteries, which were fine . With hindsight, I think this should have pointed to Genetic testing however it was assumed my DCM had been caused by a virus I’d had in the past .
When I was first diagnosed, there was lots of doom and gloom; I was told it was a degenerative disease and would only get worse, and I would at some time in the future need a Heart transplant! I had a choice to make: continue working (I was employed at Barclays Bank) or sit at home and wait to deteriorate; for me, it was a no-brainer. I carried on working and tried to put my condition at the back of my mind.
It wasn’t all plain sailing; it took a while to get my medications up to the optimum level, and I ‘conked out’ a couple of times, ending up in hospital . On one occasion, I collapsed while out power walking in the winter when it was cold and windy; luckily, one of the ladies I was walking with was a medic, called an ambulance, and I ended up in NMGH. I spoke to a consultant the next day, and he was amazed at what I had been doing! I could walk a mile in 13 minutes, and he said there was no way I should be exercising outdoors when it’s cold and windy! I said no one had ever told me that, and he said they wouldn’t be expecting me to be doing that! The only thing I have ever been told NOT to do (after I asked) is Scuba Diving.
I have continued to keep my condition at the back of my mind and done more or less whatever I’ve wanted. We have had four holidays to New Zealand and two to Australia, spending ten weeks in New Zealand on one trip. Whilst in New Zealand, I have done a Tandem Paraglide from the top of a mountain in Queenstown, swam with wild Dolphins in the ocean, and done the Shotover Jet experience at least four times; that definitely gets your heart racing !!
In 2002, I was a Mayoress and, as part of our fundraising efforts, abseiled down a 15-story building known as the Black Box; that was an exhilarating experience.
I have been taking part in Biobank research for a long time now, and in 2023 submitted a spit sample for genetic testing, where it was found I had the DESMOPLAKIN gene, and after further tests, including wearing a Holter monitor for two weeks, my diagnosis was changed last year to Arrhythmogenic Left Ventricular Cardiomyopathy after it was found I was having runs of non-sustained tachycardia up to 180bpm and I wasn’t aware of them. I had an ICD fitted in Wythenshawe in July last year, and so far, no shocks.
Unfortunately, this is a Genetic condition, and I have two children who have a 50% chance of also having the gene. My daughter has just tested positive; my son has not had a test yet, and although this means my daughter will now be monitored and get treatment if and when it is needed, a big worry for me is whether my granddaughter (aged 10) has also inherited it. She is very athletic and at the moment plays football at Academy level for Burnley Football Club; we are keeping our fingers crossed tightly.
Doctor Fairclough last week was talking about mental health and the effect anxiety, etc, can have on people with Heart Conditions. I can honestly say I have tried not to be anxious about my condition and have, in the main, paid it no heed, but having my ICD fitted was a scary time, especially as I got an infection 2 days later and ended up back in hospital, and right now is an anxious time, not for myself, but I worry for my children and grandchildren; hopefully all will be ok.
Thanks to Lillian for sharing her experience with us in the hope to raise awareness of genetic heart conditions and that despite the odds, life can still be very fulfilling. Our thoughts are with Lillian and her family while they find out whether they have the gene.