Heart Failure Sucks

SYMPACT is going well, but my life is now insanely busy. Between running my PhD study (#SYMPACT), keeping the other work of my PhD going, writing possible publications, and keeping up with my clinical role in QA Hospital. Finding the time to blog is tricky.

As it is #HFweek19 ( heart failure awareness week) I want to share some ideas I have been mulling over. Today I took the #suckalemon challenge with Pumping Marvellous and I had the opportunity to speak with two the the representatives of that charity. Something they both said, and to be fair it is one of the main aims of the charity, is that yes while heart failure sucks there are so many stories of personal resilience and strength despite facing a terrible illness that need to be shared and highlighted.

Reading Wendy Mitchell's book (a personal account of living with dementia) "A person I used to know", for me the message I read was about learning to adapt to life with dementia, finding ways to "trick" the illness so that she can still do the things she wants to do. To not let her illness win by ruining her life. While she doesn't have heart failure their are similarities between living with dementia and heart failure as neither has a cure and people with these illnesses have to a large extent figure out to live with a chronic illness on their own. Recently listening to Jillianne Code from Heart Life Foundation speak about how by sharing stories of living with heart failure that patients can help each other, to me reinforces Wendy's message and her role as a patient advocate for dementia. In my own work with heart failure patients both as a Research Nurse and a PhD canididate I have been honored by people sharing their stories with me about their struggles and their successes in living with heart failure. I am even more inspired to continue the work I've started with my PhD to try and better understand from a patient perspective what it is like to live with and manage heart failure so that as a researcher and a nurse I can maybe help work with people to find ways to help them adapt to a life with heart failure that builds in greater resilience and trying to find ways to limit heart failure from ruining everything.