My Story of Takotsubo Cardiomyopathy

*The following is a personal account of my experience with Takotsubo Cardiomyopothy that I was asked to write for the British Heart Foundation.  I’m posting here on my personal blog, in hopes that someday, somewhere, someone who goes through this unfortunate experience and is looking for someone else who’s been there, reads this.  It is a lonely place to be, recovering in an unchartered territory of illness, but it is comforting to know that others have been there too and are out here ready to walk that journey along side us.

 

Hi.  My name is Cassi.  I am a 39 year old mother of four from the southern part of the US.  A Copywriter, Lacrosse Coach, Girl Scout Troop Leader (x2), and school PTA member and volunteer.  A runner and fitness enthusiast, I try to live a healthy lifestyle, but always enjoy a little help from my friends caffeine and red wine.  

The day before my heart stopped working was just like any other day.  Busy, full of activities, so much to do and so little time to do it in.  Between Church, errands, and a fun evening at the Atlanta United Soccer game, I mentioned to my husband that I wasn’t feeling very well.

So, I went for a run.

Because that’s what we do as busy women, correct?  If something’s not right, we fix it. I had too much going on to not feel well, so the only obvious solution was to get a quick workout in which would surely cure the nausea, neck pain and fatigue that had been plaguing me since the early morning.

The run didn’t go so well, with several walk breaks due to a rapid heart rate and breathlessness.  “Too much caffeine,” I thought. I was also processing a big life decision I had recently been presented with.  “Lots on my mind.”

I called it quits at just under 3 miles and hopped on my bike to head back home. It was like pedaling through quicksand.

The nausea and discomfort continued, but so did the day.  Growing up with an autoimmune disorder, I’m no stranger to pain and discomfort.  Life goes on whether you can or not, and I’ve always preferred to not be left behind.

I think back to that evening when I was making my way to the soccer game.  My husband and children were bounding up the stairs of the parking garage and I couldn’t keep up.  Several times I had to stop to catch my breath and at one point they made their way back down to check on me.

How does one go from cardio junkie to not being able to make it up a flight of stairs? “Too much caffeine.” “Stress.” “Maybe I’m getting a virus.” Or so I told myself.

I put myself to bed that evening with a hot pad for the pain in my neck (surely just from tension from coaching a lacrosse tournament the previous day) and a warm cup of herbal tea to soothe the nausea.

Monday morning came as did school, work, and the influx of activities that keep our world spinning.  I remember feeling unusually tired. The kids would be bringing friends home from school and I had two meetings/activities to juggle that evening so as a precaution I chugged a large cup of coffee while finishing work for the day.

After the kids arrived home I began laying out the ingredients for dinner when a painful pressure started building in my chest.  I immediately regretted the couple bites of the kids’ after school biscuits I had washed down with coffee thinking, “This is what I get for eating Gluten.”

The pain progressed quickly, enough to make me sit down and wonder what in the world was going on.  After Googling indigestion and realizing that was definitely not what I was experiencing, I decided I’d get the casserole in the oven first and figure out what the pain was from later.

That walk back from the chair to the kitchen would be one that changed my life forever.  The pain furiously intensified into a crushing pressure and I could feel my heart squeezing in my chest.  No stranger to anxiety I was surprisingly calm, but my heart was beating wildly and thumping to a strange rhythm.

And then there was the pain that began shooting down my right arm.  A burning pain searing down to just under my elbow. If I hadn’t been convinced before that something was wrong, that was the last straw for me.  

Chest pain and pressure, neck pain, nausea,  pain shooting down my arm… I needed help, and quickly.

Unable to make a phone call, I signaled for my daughter to go get our neighbor and before I knew it I was in the back of an ambulance making my way toward a night full of nitroglycerin, heparin, aspirin, beta blockers, ace inhibitors and all the medications I never thought I would be on as someone still (even if barely) in my thirties.

The night in the ER plays over and over in my mind.  My nurse yelling, “I have a patient with rising Troponin!”  (Troponin is an enzyme leaked into your blood when there’s been damage to the heart muscle) … Alarms going off because of my 160/104 blood pressure and rapid heart beat.  One abnormal ECG after another.

The doctors were pretty certain I’d just had a heart attack and with the way I felt, it came as no surprise.

Lucky for me the heart catheterization revealed absolutely zero blockages in my arteries. What it did show was that the bottom of my left ventricle had been damaged resulting in apical ballooning which is causing my heart in that area to beat sloppily.

Transient heart failure.

Something known in the medical world as Takotsubo Cardiomyopathy.

This particular condition is also called Stress Cardiomyopathy or Broken Heart Syndrome.  Unlike a normal heart attack which is caused by blockages, doctors aren’t 100% sure what causes this, but they blame it on stress or sudden trauma that, quite literally, breaks the heart.

Also unlike ordinary heart attacks, Takotsubo is thought to be reversible and it is believed that by following my medication and rest protocol to the letter, I should (hopefully) make a good recovery.  

At least, that’s the old school of thought.  Newer studies (which are extremely limited due to the rareness of the condition), are showing damage may be long term more often than not.  Patients who were once thought healed are returning to the hospital with second and third attackes, myocardial infarctions, arrythmias and stable and unstable angina.

Doctors are intrigued.

So life for me, in a moment, went from the far left fast lane to a screeching halt on the side of the road.  And as I sit here in the dark, with my hazards on, waiting for healing to come, I can’t help but wonder, what caused this?

Was it really stress?  And if so, why weren’t half of my friends who also live life under stress in the ER that night as well?  Is it because of my anxiety? Studies show that there is a definite higher rate of occurrence of Takotsubo in people who suffer from anxiety disorders.  Was it physical? I also suffer from Supraventricular Tachycardia (SVT) and have a small abnormality in my heart called a myocardial bridge. Did either of those conditions contribute to the Takotsubo?

I’ve read about people questioning the link between people who suffer Takotsubo and Autoimmune Disorders.  Is the inflammation caused by my autoimmune issues to blame for the episode that nearly shut down my heart?

Or was it the news of my own father’s failing heart, which I received the morning of my attack, that sent my own heart over the edge.  The guilt and anguish over knowing that if I could have gotten him to the hospital sooner, his blockage may have been cleared and his heart function wouldn’t have been reduced to an EF of 30%.  Was this truly a case of Broken Heart Syndrome?

With Takotsubo Cardiomyopathy being such an unusual condition, it’s hard to know. The one thing I can be sure of is how serious I am taking my recovery and how happy I am about the people all around the world that are working to spread awareness and find out more about this heart breaking condition.

It’s not easy to slow down in this fast paced society we live in, but when your heart stops you in your tracks, you listen.  I’m thankful for the amazing help I received and the care I was given, and I’m hopeful that someday doctors will have an even better understanding of Takotsubo, and that we can work together to stop it in its tracks.

4 thoughts on “My Story of Takotsubo Cardiomyopathy

  1. I know you will find a way to live a full, healthy life after this. He will make a way where there seems to be no way and He will lead you there! Marlan and I are grateful to have been able to be there for you during this crisis and get to know your wonderful children better the brief time we had them. We love you and your family!!!!!

  2. Cassi, I found this article and am happy to be reading that you are recovering! I have followed your shenanigans on fb for years….waaay over here in Idaho and always chuckle. This was uncharacteristically NOT funny. Please know I think of you and Eric often and continue to hope the best for you and the family. Take GOOD care of yourself. Love, Becca

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