My name is Sue, I am 76 and have one daughter and 3 grandchildren. I was diagnosed with dilated cardiomyopathy and heart failure 3 years ago.

What led to your diagnosis? What has happened since then?

At the time of diagnosis, I was strong, fit, healthy, worked out and walked most days. I was short of breath when exercising but it would subside after a couple of minutes; I thought I had ‘weak lungs’. When I met with a cardiologist in March 2022, he advised my heart was not working at full capacity and suggested losing weight.

 In November 2022 when driving, I found myself on the opposite side of the road, heading for a creek.  A passing motorist called an ambulance, but tests in hospital revealed nothing abnormal; the incident was classified as a faint. However, whilst waiting to be collected from hospital I went into cardiac arrest in the waiting room. I was transferred by ambulance to the trauma hospital, where I arrested again. After 5 days in ICU, I was diagnosed with dilated cardiomyopathy and ventricular tachycardia.  Medication was commenced and an implantable cardioverter defibrillator (ICD) inserted. Six hours following the insertion, I went into cardiac arrest for a third time.  I came through with flying colours thanks to the ICD.

How does cardiomyopathy impact your life?

My confidence has been impacted, and I am coming to terms with not being able to do the things I took for granted.  Being unable to drive for 8 months, I had to rely on friends and family; I was vulnerable and frustrated.  I miss the freedom of travelling alone; I now travel as part of a group. I am coming to terms with the amount of medication I need although I have some anxiety when travelling should I lose my hand luggage.

I have had three further cardiac arrests since leaving hospital, however additional medication has helped. With time, my anxiety has decreased, and I am now better at listening to my body.

How has cardiomyopathy impacted your relationships (partner/family/friends)?

I have let friendships fade when they no longer felt right and know I have changed. I now put myself first. I love it when friends take an interest in my journey, don’t tell me what I should/shouldn’t do and don’t dismiss a symptom I might share. Throughout my illness, I have always looked ‘well’ which has meant, for over 2 years, I felt the need to reinforce what I’d been through. This was my ‘playing the victim stage’.  My family have been so supportive, my grandchildren think I’m cool (the greatest compliment) and my siblings, also supportive, would never allow me to wallow in self-pity.

 

Having lived with cardiomyopathy for some time, what is something you’d like to pass on to someone more recently diagnosed? Or what is something you wish you’d known about earlier, which might have made your journey with cardiomyopathy more manageable?

It gets better. Temper your expectations following your diagnosis, be patient and remember anxiety is normal. I had booked an overseas trip before my diagnosis which gave me reason to exercise and build strength after hospital, something to look forward to. I now set goals for the future.  Surround yourself with positive people and take a notebook and companion to your appointments.  I keep a record of my test results and in the early days recorded my feelings. I enjoy reading them now to see how far I have come.

How has/can a patient support group assist?

Support groups help you realise there are many others who have been on a similar journey; whether it be reactions to medication, shifting stubborn weight or just realising you are not imagining things.  I know I am not alone.