My medical diagnosis means more to me than to you

12 Mar

by Carolyn Thomas   @HeartSisters

As a person who lives with and writes about coronary microvascular disease (MVD), I feel lucky that my family doctor, my cardiologist and my pain specialist are all believers. It’s like the trifecta of diagnostic wins for a heart patient! I say that because one of my blog readers, after asking her physician if her puzzling cardiac symptoms might be due to MVD, was told:

“I don’t believe in coronary microvascular disease.”

I guess it’s time to remind such physicians that we’re not talking about Santa Claus or the Tooth Fairy here. Continue reading

Just living life. No awesomeness required.

5 Mar

I’m always chuffed (as my Brit friends would say) to run into an patient essay that’s so good, I wish I’d written it – one that captures the essence of what I’ve been thinking all along but somehow haven’t quite gathered those thoughts as succinctly. Although Barbara Westfall wrote this for her blog Pilgrim125 as a woman living with Stage IV breast cancer, she tells a familiar story that spoke to me as a heart patient, too.

She writes about those magical moments when we just try to live life as if we didn’t have a life-altering medical condition, thank you very much, no matter what our diagnosis. With her kind permission, I’m sharing it with you. Thank you, Barbara!

Continue reading

The delayed ‘Trauma Drama’ of heart disease

26 Feb

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by Carolyn Thomas    @HeartSisters

Summer Ash is a self-professed space cadet. She’s an astrophysicist at Columbia University’s Department of Astronomy in New York City, where she serves as the Director of Outreach. Five years ago, she underwent open heart surgery after she was diagnosed with an aortic aneurysm (that’s when the tissue of the aorta balloons out dangerously). This condition was likely linked to a congenital heart defect Summer was born with called a bicuspid aortic valve. About 99% of people, she explains, are born with a normal tricuspid aortic valve (meaning three leaflets in the valve), but she was one of the 1% born with only two. With her kind permission, I’m running her story here as it was originally published in 2014 on her blog, Defective Heart Girl Problems.
Continue reading

Pain vs. suffering: why they’re not the same for patients

19 Feb

by Carolyn Thomas      @HeartSisters

I’ve written a lot (here, here, and here, for example) about cardiac pain, because I live with a lot of cardiac pain called refractory angina due to a pesky post-heart attack diagnosis of coronary microvascular disease. This pain varies, but it hits almost every day, sometimes several episodes per day, and it can feel very much like the symptoms I experienced while busy surviving what doctors call the widow maker heart attack in 2008.

But there’s pain, and then there’s suffering. The two are not the same.

I spent many years working in the field of hospice palliative care, where we all learned the legendary Dame Cicely Saunders‘ definition of what she called total pain”.(1)  This is the suffering that encompasses ALL of a person’s physical, psychological, social, spiritual, and practical struggles. Although addressing total pain is an accepted component of providing good end-of-life care for the dying, the concept seems to be often ignored in cardiac care for the living. Continue reading

If you’re clueless and you know it . . .

12 Feb

I am clueless about many things. As in the definition: “Lacking understanding or knowledge.” As in the sentence: “I have no clue!” As in the 20+ years I spent living with a research scientist and enduring mind-numbingly torturous dinner party conversations about zinc and copper sediment in the Fraser River estuary.

That kind of clueless.
Continue reading

A plea for the return of the classic bed jacket for patients

5 Feb

Hospital patients make an immediate trade that none of us want to make. The non-negotiated trade goes like this: We’ll take away (or, in some cases, cut off) your own nice clothes, toss them in this plastic sack, and in exchange, we’ll let you wear this shapeless, backless hospital gown and some goofy-looking booties while you’re here.

This is a trade designed for hospital workers, not for patients. But herein I launch my one-woman campaign to consider a revisit to the timeless yet under-appreciated garment called the bed jacket in order to combat the hideousness of those much-hated hospital gowns. Continue reading