Dear Carolyn: “Adapting to adaptations?”

10 Mar

by Carolyn Thomas  @HeartSisters  March 10, 2019

People living with chronic illness often discover that they must adapt to changes in what occupational therapists like to call our activities of daily living (ADLs).  The basic ADLs typically include eating, bathing, dressing, grooming, toileting, and moving around independently (e.g. getting up off that couch). Even smaller changes occur: for example, I now wear a medical I.D. on my wrist all day. I never leave home without my nitro spray for chronic angina. I count out all my cardiac meds for the week in labeled pill organizers. These represent a few of the many adaptations I’ve learned to make since my cardiac diagnosis.
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Today, in this Dear Carolyn episode (our eighth in the occasional series featuring Heart Sisters readers sharing the experiences of becoming a heart patient), we’ll attempt to address a related reader question about adapting.

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Why “Call me if you need help…” is not helpful

3 Mar

by Carolyn Thomas  @HeartSisters   March 3, 2019

Immediately after my heart attack, I appreciated kind-hearted friends and family who said: “Just call me if there’s anything at all that I can do for you!”

But as well-meaning as those offers were, I knew deep down in my heart of hearts that I was NOT likely to call them to ask about certain things I needed help with, like:

“Can you please come over and change the kitty litter?” 

As those who don’t like asking others for help can attest, that request was just never going to happen.   Continue reading

When heart attack symptoms disappear – and then return

24 Feb

The heart patient’s not the only one in the room

17 Feb

by Carolyn Thomas    @HeartSisters    February 17, 2019

 

Leslie Pitt is a marriage and family therapist whose husband Graham suffered a terrifying sudden cardiac arrest in his sleep while on vacation in Hilton Head Island, North Carolina. In this short and compelling video, she talks about the care they each received from 9-1-1 dispatchers and Fire Rescue personnel – care that not only saved Graham’s life, but significantly reduced her own post-traumatic stress.  Continue reading

Is SCAD rare? Or just rarely diagnosed correctly?

10 Feb

by Carolyn Thomas   @HeartSisters    February 10, 2019

I was happy to see Katherine Leon featured in The New York Times recently. Katherine, like me, is a graduate of the WomenHeart Science & Leadership patient advocacy training at Mayo Clinic. She told the Times of undergoing emergency coronary bypass surgery at age 38, several days after her severe cardiac symptoms had been dismissed by doctors who told her, “There’s nothing wrong with you.” She isn’t alone. Many, many studies have shown that female heart patients are significantly more likely to be under-diagnosed – and worse, often under-treated even when appropriately diagnosed – compared to our male counterparts. This is especially true for women with her condition (Spontaneous Coronary Artery Dissection, or SCAD) that was once considered to be a rare disease. Dr. Sharonne Hayes is also featured in the NYT piece; she’s a respected Mayo Clinic cardiologist, longtime SCAD researcher and founder of the Mayo Women’s Heart Clinic. (You can read their story here).

But almost as soon as the Times piece was published online, I was gobsmacked to see some of the reader comments coming in – especially comments from people like these:   Continue reading