My friend Lorraine has been posting recently about her medical journey. She almost went down a road that would have involved invasive surgery, a lengthy recovery and time lost on the things she loves most. However, she sought a second opinion and has a new plan that will hopefully resolve her issue while preserving her health and time.
Although Lorraine’s story doesn’t regard cardiac health, it dovetails with four different cardiac health stories I’ve heard this week. The topic is personally relevant for many reasons, and each story left me wishing we handled women’s cardiac health issues differently.
Sudden Death Due to Cardiac Arrhythmia
My friend Chris Russell shared a story this week about a young endurance runner who died suddenly due to a cardiac arrhythmia.
The information about cardiac arrhythmia accompanying the article says this:
Cardiac arrhythmia is a frequent cause of death during sleep. This is when the heartbeat is irregular and the heart may be beating too fast or too slowly. Although they can affect all age groups, it is more common in older people and drinking in excess or being overweight puts people at greater risk. Sudden cardiac death from an arrhythmia kills around 100,000 people every year.
Note: I believe the “100,000 people per year” figure applies to the UK. The Cleveland Clinic puts the figure for adults in the US at 325,000.
Whether it’s 100,000 or 325,000, the number is too high. Due to our family’s experience with Long QT Syndrome (we lost a family member who died in her sleep at age 30, leaving behind three young children), along with stories such as Christine Garwitz Puricelli’s regarding her daughter Emilie (here’s Emilie’s page for info and donations), I am a staunch advocate for awareness on the part of medical practitioners and self-advocacy by patients.
Takeaway: Be persistent if you feel there is an issue even after doctors say things are okay. (My sister-in-law had been hospitalized a short time before her death, but the medical exploration focused on areas besides cardiac issues. How could a 30-year-old with a career and three little kids, appearing mostly healthy, have a cardiac problem?)
(Now that we know of the issue, most people in the family who share genetics with my sister-in-law have been tested and the ones who do have Long QT are on appropriate medication and know what precautions to take — this stands a significant chance of helping them normal lives with normal longevity, thank goodness.)
A Close Call Due to Sudden Cardiac Arrest
My friend Lisa posted this article about a man who went into sudden cardiac arrest during a workout and was revived by a truly serendipitous combination of events that included the presence of nurses (and easy access to an AED).
Lisa should know. I think it’s safe to say every single one of us in the Tallahassee running community who know and love Lisa said something like “you must not mean Lisa” when we first heard about her cardiac arrest and subsequent surgery a few years ago. (Lisa tells her story here in this older post from a time when we were trying to help her with a particular campaign.)
Takeaway: While it would be unrealistic to say “never work out alone” or “always have a trained medical professional nearby,” do be cognizant of your workout conditions, especially if you have a family history (Lisa had a family history; I’m not sure about the cross fitter featured in the other article). I suppose the other takeaway is “don’t assume anyone is invincible.”
A New Cardiac Problem Along With a New Baby
My friend and former coworker Janet posted this article about a woman who developed postpartum cardiomyopathy shortly after her baby was born. Janet, who also came far too close to losing her life due to PPCM, feels that education is important (I agree).
More about PPCM (from My Heart Sisters):
In PPCM, heart cells become damaged through an inflammatory process, and a woman can go from healthy to complete heart failure in hours, days, weeks or months after giving birth and sometimes while pregnant. It is one pregnancy complication that is rarely spoken about and because no one talks about it, it continues to claim lives and cause incredible suffering.
Much like Serena Williams had to convince doctors that she was on the verge of a life-threatening condition right after she gave birth, many PPCM stories I hear have the same thread: “thank goodness a medical professional FINALLY listened.”
When Technology Helps Reveal An Underlying Issue
My friend Karen had serious open-heart surgery last year. I believe it’s safe to say everyone thought the major issues were resolved, and she returned to her taxing career as an elementary school teacher. I’m keeping this explanation concise, because it’s a developing situation and I respect her privacy.
But apparently she had an Internal Loop Recorder placed after her original surgery. It recently showed signs of a serious new issue. That led to a life-saving placement of a pacemaker/defibrillator. Without the loop recorder, it could have taken much longer for the new issue to arise, and her life would have been more at risk.
Takeaway: Technology can play a huge role in cardiac health. I have an IRL too (for a much less serious reason than Karen) and I am reassured that it is keeping track of my Multifocal Atrial Tachycardia so if an issue does arise, I can have it addressed immediately and my physician will have lots of useful information. By the same token, and I realize this contradicts what I just said, don’t depend solely on technology. It isn’t the only information that helps a doctor make a decision and it can be inaccurate.
How to Be Your Own Best Advocate
When I set out to write this post, I asked if I am really qualified to do that (this is a question I ask before writing most posts, but in general I believe in taking the first step and acknowledging that there is a wealth of information among my readers/followers — what I don’t know (or get wrong), they can fill in the blanks).
Based on the four scenarios and takeaways I shared above, here are 5 important tips (even if I don’t practice them perfectly myself).
- Keep asking even if told you are okay
- Modify your fitness routine to accommodate any potential cardiac issues
- Do your own research
- Document everything
- Take advantage of technology
I also like much of what Trin Perkins has to say in 5 Ways to Be Your Own Health Advocate, including “view yourself as the client, not the patient.” She has a point.
I am happy some of the people mentioned in the stories I shared today survived, and sad that some lost their lives when I believe more awareness of women’s cardiac health issues could have led to a different outcome.
Speak up, friends. Your life may depend on it. (And please listen up, medical professionals. Our lives may depend on it.)
Wife of one, Mom of two, Friend of many. My pronouns are she/her/hers.
Great reminder and stories to back it all up!
Paula Kiger (@biggreenpen) says
Rebecca Olkowski (@baby_boomster) says
It’s so important to get check ups and monitor your own health. As women we often put others before ourselves.
Paula Kiger (@biggreenpen) says
Exactly. True over and over again. Thanks for stopping by.