Unseen, unheard: the commonly shared lived experience of patients

by Carolyn Thomas  ♥ @HeartSisters

At first, I was surprised that so many women living with breast cancer were following my Heart Sisters blog. I’ve never had breast cancer and I rarely write about breast cancer (except here, for example, on the known link between breast cancer treatment and subsequent heart disease). Yet what I was soon to learn was that heart patients have lots in common with cancer patients, or with anybody else who has been blindsided by a serious medical crisis. Although the diagnosis may be different, we can face the same shock, fear, confusion, pain and exhaustion experienced by all who suddenly know what it’s like to become a patient.

Abigail Johnston is one of those breast cancer patients. We follow each other’s blogs. She was a 38-year old lawyer and mother of two boys when she was diagnosed with Stage IV Metatastatic Breast Cancer (MBC) in 2017. She writes about this on her compelling blog, No Half Measures from her home in Florida.  Every word of her recent post called “Unseen and Unheard  hit home for me.        .       Continue reading “Unseen, unheard: the commonly shared lived experience of patients”

Dear Carolyn: “I take issue with the heart attack terms STEMI and NSTEMI”

by Carolyn Thomas   ♥   @HeartSisters

Today, in this Dear Carolyn episode (our 11th in the occasional series featuring Heart Sisters readers sharing their heart patient perspectives), we’ll attempt to address my reader Eva’s observations about how our heart attacks are currently classified:

I take issue with the terms STEMI (the most serious type of heart attack) and NSTEMI (a slightly less serious heart attack). But both types of heart attack have a serious impact on our lives and how we live them.”             

Dear Eva,

The day I first read your comment in response to an earlier Heart Sisters post coincided with the tragic heart attack death of a woman in an American hospital’s Emergency Department. Continue reading “Dear Carolyn: “I take issue with the heart attack terms STEMI and NSTEMI””

Revisiting the “widow maker” heart attack

by Carolyn Thomas       @HeartSisters

In 2018, many viewers of the hit NBC television drama “This Is Us”  learned the term “widow maker heart attack” for the first time when the beloved main character Jack Pearson was pronounced dead. As TIME magazine later reported, online searches for that term spiked more than 5,000 per cent in the hours after that episode aired. Some viewers took to social media to tell their stories about loved ones who had died from – or survived – their own cardiac events.

Television is so educational!           .    Continue reading “Revisiting the “widow maker” heart attack”

Diagnostic uncertainty: when we just don’t know

by Carolyn Thomas      @HeartSisters

The image above is all about uncertainty. It’s like a 5-step roadmap that you’d use when traveling an unfamiliar road to a new destination you know nothing about and do not want to visit.(1)  For people experiencing scary symptoms they fear might be heart-related, for example, uncertainty about what’s happening now and what will happen next is pervasive. But a new study published in the journal Patient Education and Counseling reminds us that patients aren’t the only ones facing uncertainty around a medical diagnosis: “Both patients and clinicians experience diagnostic uncertainty, but in different ways.”(2)        .        .   Continue reading “Diagnostic uncertainty: when we just don’t know”

New chest pain guideline: “atypical” is OUT!

by Carolyn Thomas    @HeartSisters

At last! This long-awaited first-ever Guideline for the Evaluation and Diagnosis of Chest Pain for physicians and their patients has done a deep dive to help improve accuracy in evaluating and diagnosing cardiac symptoms(1)  – a huge and overwhelming effort.  I’m hopeful that updated guidelines might represent a turning point for all women presenting with those symptoms – and for the physicians who diagnose them.  Here’s my take on the impressive new Chest Pain Guideline  – along with a few concerns:      .       .  Continue reading “New chest pain guideline: “atypical” is OUT!”

False hope: better than no hope?

by Carolyn Thomas      @HeartSisters

My former colleagues in palliative care often spoke about the concept of hope as being a fluid, ever-changing state of being. When we’re suddenly face-to-face with a frightening medical crisis, for example, we hope at first that maybe the diagnostic tests were wrong. When the diagnosis is confirmed, we hope that this treatment/this procedure/ this drug will be the cure. But if we’re not cured, we hope that our symptoms can be managed so we don’t suffer. If we do get worse, we hope that our suffering won’t become a burden to our families. Then we hope that after we’re gone, our loved ones will be taken care of.

There was never talk about “no hope”.  There is always hope.  But our hope changes.     .             . Continue reading “False hope: better than no hope?”