The Irish Heart Foundation - My heart failure story


My Mum passed away suddenly from Spontaneous Coronary Artery Dissection. The doctors said nobody could have known, but did my Mum know? On the day she died she rang all of her children. She went for dinner with her sisters and cousins. She came home, said good night to my Dad...and dropped dead. 

Did my Mum’s heart and soul know something catastrophic was unfolding as she played out her last moves? 

I Googled everything, it was all pointing to my heart but I was missing the swollen ankles. I didn’t know that some people can retain water in their abdomen. I thought I was putting on weight because of an increasing mystery fatigue that didn't allow me the energy to exercise.  

10 years later, aged 41, I knew something was wrong when I started waking at night gasping for air. I had an existing heart condition, dilated cardiomyopathy, but it was mild, minding its own business since my chemotherapy left it behind 20 years ago. I was now sleeping at night like medieval royalty with a plethora of pillows to stop the ‘drowning’. I knew it was time to go to the hospital but I had a 4 year old and an 80 year old to look after. 

When the house was quiet at night, before I’d climbed into my royal crib, I would tune into my body. On one occasion I felt my heart pounding with all its might, like it was desperately yelling at me, then it stopped, my vision faded and I started to collapse only to have my heart beat me back to life. The very next day I went to the hospital where I stayed for a month. I was diagnosed with sudden and severe heart failure and had an ICD implanted. I've subsequently had open heart surgery to repair a valve, and now take a laundry list of life saving medications every day. 

I still suffer from bouts of fatigue on a daily basis, a type of endemic exhaustion that has to be experienced to be understood. My heart occasionally flutters and pounds as I go about my business. I talk about my skipped heartbeats so casually my husband thinks it's my DJ name - 'Ectopic Beats' in the house! I no longer get little colds, instead I get full on Dickensian style take-to-my-bed doses. When I'm very sick my crumpled breath escapes my body with whistles and creaks.

But there is life after diagnosis, with treatment I have improved, last year I walked the New York Marathon by myself, for myself. I am currently training for a 100km night cycle through London for women's cancers. It's not everyone's path after a Heart Failure diagnosis, I am one of the lucky ones. 

My 8 year old daughter is my cheerleader and my inspiration. With a sick mother, she is a fighter in her own right. She’s the reason I want to get to a better place. So for my own mental health I turned to the Irish Heart Foundation, where like-minded patients with a shared experience prop each other up through their Heart Support Network. For medical questions and sanity checks there is a Nurse Line that will steer patients in the right direction. They also offer complimentary counselling for emotional support and online exercise classes for physical progression.

If this doesn’t sound like it’s for you, I understand, I felt that way at the start, but as I learned more about survival I realised reaching out is a basic human need, even for those who are beyond the Earth's pull. When the International Space Station was designed, it was the astronauts who insisted on a table. In theory a table is not advisable in zero gravity, but the crews wanted something nailed down to allow them a place to gather and communicate.

If you are suffering from heart failure, you are not alone.

Read the original article here - You are not alone - my heart failure story