January 25, 2022
To save questions and share with folks that I am not skiing in Boone, N.C. for the entire month of January, here is a bit, or a book rather, to share about a little about what is up in my life right now. Get comfy, because the backstory is why I am here.
This surgery has nothing to do with my recent weight loss 😉 Although that journey of better health was preempted by much of what I have been discovering…which is heart health! With a great program I am on that teaches you how to eat regularly, often and properly, I am on a slow and steady journey myself – 60lbs down since August 2! My own wedding photographer is now my health coach – I have done this before and am doing it again on my own – so, SPOILER ALERT – this life even post isn’t about something crazy there 😉
May 17, 2010 I had missed a few calls when I woke up. They were from my dad and then brother who asked me to call when I got the chance…. and upon calling shared, ‘mom’s gone.’ The gist of it was that she simply didn’t wake up that morning. Dad woke up to an alarm clock still going off that mom had missed, because she had passed away in her sleep next to him. The pictures above are some of the last we had together. Her passing revealed that she had cardiomyopathy and would have been a great candidate for a heart transplant. She also, having never smoked or drank, had emphysema, a shot liver and double bronchitis. No one had any idea. Upon talking, dad feels she knew something was wrong with her based on her remarks leading up to her passing.
Fast forward 10 years later to November 2020 in the middle of Covid. Without warning signs or any symptoms, I pushed to have an echocardiogram done based on my mom’s history and the simple feeling that it could be something hereditary. It showed I also have cardiomyopathy and already much scarring on the heart. I moved my appointments from New Bern to Greenville 6 months later after it wasn’t showing improvement (there was a slight chance it could have been post-partum induced), I was quickly referred to the Vidant Heart Failure clinic (though I’m not technically in heart failure) where the doctor specializes in Cardiomyopathy.
After the clinic ran genetic testing, it showed there is a pathogenic mutation in the FLNC gene – meaning, the electrical stability of the heart. Genetic testing is very new – like, 5 years new. In the U.S., genetic testing isn’t done upon passing. In many other countries, it is. Studies on this mutation are showing up rapidly with a correlation between sudden cardiac arrest and the gene. My cardiologist is very well kept with new studies dealing with cardiomyopathy, so he quickly supported and encouraged an ICD (an implantable cardioverter-defibrillator) being placed. Not a pacemaker, but something that will shock me off my feet if my heart were to stop…. thus saving my life.
I was sent to an electrophysiologist. I am in a weird category – my heart is functioning fairly well, so the electrophysiologist stepped back and wanted to assess my situation. He couldn’t, based on my numbers, say I needed an ICD. He did further studies on the mutation and came back strongly encouraging to move forward with it as soon as we could. In a particular study he saw, it showed those with this FLNC gene mutation had an 80% sudden cardiac arrest rate. This device would ‘guarantee’ that should the heart stop in it’s unpredictable nature, it would have another chance.
All this to say, this has been an emotional time. Health changes certainly can’t do anything but help my heart, but those changes will never ‘fix’ what is underlying which is an electrical issue.
It brings back many strong feelings of my mom, as well as the presence of something that I am aware I have, but now a device will be there to show it. The small anxiety of ‘what if it goes off while I am driving?’ Many others have gone through similar things and much worse experiences. I am so fortunate to be in great health and in the care of a great team who cares.
If you have a gut feeling that you could have something hereditary, get checked out! After talking to my uncle, it turns out my grandma also often remarked about her heart skipping, feeling odd.
December 29th is (or if you are reading later, was) the procedure. It will be a journey of recovery time, 4-6 weeks max, primarily not using my left arm or lift anything over 5-10lbs (no boys, no cameras, you get it…..)
Prayers are deeply appreciated and once I am okayed to keep on in my business, I will let everyone know!
Thank you, to each of you.
Strength for today and bright hope for tomorrow,