February is American Heart Month, an annual initiative that encourages all people to focus on cardiovascular health. To help raise awareness, Blue Yonder associate Ali Magas shares her diagnosis story and why it’s important to always listen to your body – and especially your heart.
Tell us about your heart diagnosis journey.
I first started having heart issues when I was around 28 years old. I’ve always worked out a lot throughout my life, but then one day I suddenly felt very dizzy as I was walking up the stairs, so I decided to go to the cardiologist. When they performed an echocardiogram, they noticed that my heart was pumping improperly, so they put a monitor on me and later that night, I had the rhythm of sudden cardiac death in my sleep. Luckily, it was not sustained, but my doctor knew something was terribly wrong so he ordered a cardiac MRI. I was diagnosed with viral myocarditis, which is inflammation of the heart muscle due to a viral infection. The doctor prescribed some medicine, which I continued to take on and off for several years without any major incidents.
I carried on with my life, eventually getting off the medications. In 2021, I gave birth to a baby boy. Later that year, we moved from Arizona to Maryland to be closer to family. I started working out a lot again after having my son to try to lose the baby weight and started feeling weird during those workouts. I figured it was probably just a leftover scar from the myocarditis and didn’t think much of it. There was quite a bit of stress in my life from having moved cross country, adjusting to a new living situation, and having a young child running around.
Then one day I went out with my husband’s family to celebrate my birthday. I drove home, sat down at the dining room table with my sister-in-law, started talking, and completely passed out. I had sudden cardiac arrest.
I remember laying myself down on the ground, and as soon as I did, I couldn’t breathe – but my brain was awake. I remember thinking, “Oh, this is bad, I’m not breathing,” and it got really blurry after that. It felt like I was falling, and the last thought I had was, “I need to stay alive for my son.” Thankfully, my sister-in-law was with me when it happened, and my husband was able to perform CPR before the EMTs arrived.
Most of the memories I have now are from the EMTs telling me the story afterwards. I had experienced CPR-induced consciousness (CPRIC), where your brain is getting enough oxygen but your heart isn’t pumping, which caused me to wake up while the EMTs were drilling into my knees to hook up the IV. I woke up with no heartbeat, kicking and screaming, “Help me!” I didn’t have a readable heartbeat for over seven minutes.
Designating me a “heart failure” patient, I was put back on a bunch of medications. Not knowing anything about my disease, the doctor put me in a LifeVest that will shock you if you go into cardiac arrest. I wore this vest for two months, constantly being awaken from sleep when the LifeVest would think I was having a bad heart rhythm when it was just “noise” from me moving around in my sleep. . This added even more stress to our already hectic lifestyle.
I didn’t know what to do. Thankfully, my mom is a big health advocate and worked in a laboratory that performs genetic testing. Even though she was still living in Arizona, she spread her network as far as possible and found a family friend who also had electrical issues with his heart and was able to recommend an electrophysiologist, Dr. Hugh Calkins, at The Johns Hopkins Hospital in Baltimore, just a short drive from us.
Unlike the previous doctors, he started off by performing a DNA test and was able to immediately diagnose my condition – a fairly new genetic disorder that causes the proteins in my heart to break down more easily than normal. All of those high-intensity interval training (HIIT) workouts over the years had broken down my heart tissue and caused the electrical issues. My doctor explained that all those years ago, my myocarditis diagnosis was likely a misdiagnosis – that my genetic disorder is what caused all my heart issues this entire time.
Luckily for me, Johns Hopkins is the top hospital studying this disease, so our move across the country was truly lifesaving. I’m currently on three different medicines and have an implantable cardioverter-defibrillator (ICD), which has never shocked me. As long as I take care of my body and cut out the intense workouts, I should be able to live a full life. I’m now part of a research study on this disorder as well.
What is one common misconception about heart failure and cardiac arrest that you’d like to clear up?
People refer to everything related to the heart as a “heart attack.” A heart attack is plumbing, which is clogged arteries. I had cardiac arrest, which is an electrical issue that causes your heart to stop pumping.
There are also a lot of misconceptions around what the typical heart patient looks like, such as older or overweight. Heart conditions affect people of all ages and lifestyles, from younger people to major athletes. There are many people I’ve met online of all sorts of backgrounds and ages that had no idea they had this condition. There is still so much we don’t know about genetics and how they affect your body.
What lessons have you learned from this experience that have helped you to lead a full life?
I’m more conscious about what I put into my body, from food and beverages to supplements and medicines. There are certain supplements and ingredients in protein shakes that can cause arrhythmia. I’m also not allowed to take ibuprofen anymore, since that has long-term implications for people that have heart damage.
I’m also more conscious about working out. Since I have damage to my heart muscle, I need to exercise to get it strong again, but I can’t go too hard as that can lead to further damage. So I do a lot of walking. I have a rule for myself that if I go on a walk, I make sure I have enough time to walk 3 miles.
What advice or words of encouragement would you share with someone who might be going through the same thing?
You have to be your own advocate in the health system. You’re the only person in this world who knows what’s going on deep down in your own body. While the doctors have a medical degree and practice, they aren’t all experts on everything. I knew when the first doctor told me that I was just a heart failure patient that it wasn’t true, and if I had stayed with her, I would’ve never received an ICD and likely would’ve died. You have to keep pushing until you get the right doctor and the right answer.
What is one thing you hope readers take away from your story?
I inspired a lot of my friends to take CPR classes. It only takes 30 minutes, and you can do it for free at your local fire department. They’ll teach you how to perform CPR and use an automated external defibrillator (AED). AEDs are everywhere now – schools, airports, grocery stores – and if someone goes into cardiac arrest, being able to perform CPR within the first four minutes is absolutely critical. You have to react immediately, and you have to be confident. I’m incredibly lucky my husband was there to perform CPR immediately (he hadn’t ever done it before, but the 911 operator walked him through it on the phone with no problem); had he not been, I may have ended up brain dead or may not have survived.
Anything else you’d like to share?
Take care of yourself. Listen to your body, and most importantly, trust your body. If you think something is wrong with your body, go get it tested. Do your own research. And if you think that something isn’t adding up, maybe that’s because it isn’t – see more doctors, get a second opinion and don’t stop until you feel more confident in the answers you are getting.
Every year on my rebirthday (January 8), I visit the fire department to give the EMTs who saved my life donuts. I’m one of the only people they know who has ever survived sudden cardiac arrest, so they (and I) really enjoy our annual celebration.
To find a CPR training class near you, check out the American Red Cross, which offers both in-person and online training. In the UK, the British Red Cross offers courses.
