Mo Chroí

Mo chroí, my heart.  4 years ago these words related to my feelings of love after having a child. After giving birth to my first daughter, I used to whisper this to her during our many sleepless nights together.   I even considered having the words tattooed on my body somewhere.  But I knew I wanted another child someday and I decided against getting a tattoo that only honored her in hopes of someday getting a tattoo that would honor all of my kids.

In the shower this morning, the memories of holding my newborn and breathing those words came whooshing back to me. 

This story is not just my story.  It started as my Dad’s story, then became the story of our family.  This story does not have an ending.  We are still testing and learning and it still has many unknowns.

August 2^nd, 2014.  A regular Saturday.  My sister and I had plans to take my niece to her first concert.  Katy Perry.  I met my sister at her house and before we left, she said “I just want to run down and check on Dad, he’s been having trouble breathing today”.  This was odd of course, but when she checked on him he seemed fine and off we went.

August 3^rd, 2014.  My parents, siblings and nieces gathered for a family lunch in honor of my nieces’ birthday.  My Dad mentioned he had been feeling a little lightheaded and he said he was going to call his doctor on Monday.  As we were leaving the restaurant, he was carrying my son and stopped short, having to quickly put Flynn down because he felt dizzy and couldn’t breathe. 

The next week was a whirlwind.  My dad woke up Monday with chest pain, went to the doctor, then to the hospital.  The local hospital transferred him to Beth Israel in Boston.  He was diagnosed with heart failure and 15% heart function. 

Heart failure.  What a scary freaking couple of words.  My Dad has undergone many tests over the past couple of months.  Recently, an MRI gave us a more specific diagnosis.  Left ventricular noncompaction cardiomyopathy (LVNC).  A genetic condition.  The cardiologists strongly recommended a routine cardiac evaluation for all immediate family members.  My Dad also had blood drawn to look for a mutation known to cause this particular kind of cardiomyopathy.  We do not yet know the results of that test.

This week I had my first tests done.  I went to Beth Israel for an echocardiogram on Tuesday.  My blood pressure before the echo was 151/101.  I have had high blood pressure since my first pregnancy that has never ‘gone away’ so it is not unusual for me to have spikes, especially if I am nervous or stressed.  On Wednesday, I went back to meet with a cardiologist who also specializes in familial heart disease.  My blood pressure that day was 145/95.  My echocardiogram showed decreased heart function. A normal heart's ejection fraction is between 55 and 70.  Mine is currently at 45%.  My high blood pressure, familial history and current heart function warrant more testing.  I am awaiting a call back to schedule the heart MRI.

I’ve inherited many things from my Dad.  My chin, my hair color, my eye color, my skin tone, my height...  It now appears as though I may have inherited his heart as well.  I am 33 years old and a cardiologist is now a regular part of my life.  I will see a cardiologist as regularly as everyone else goes to the dentist.  My new normal.

I do not have heart failure.  I don’t even technically have a 'heart issue' right now.  Yet.  I will be tested to see if I also have LVNC like my Dad.  I do have an increased risk for developing heart failure later in life.  The doctor said yesterday “your Dad lived 62 years with this condition feeling fine.  He felt better than fine.  And then one day he wasn’t.  You are lucky to know so early that you are at risk.  You will be monitored and we will know if your heart function is decreasing before it ever gets to 15% like your Dad.” 

There are no treatments that can prevent or change the course of heart failure.  However, modern medicine is advancing every day, and doctors believe preventive treatments will be developed in the future.  Right now, doctors manage heart conditions with medicine and lifestyle changes.  LVNC is a little different.  It’s actually a rare genetic disease and there are limited studies on it.  There is no specific treatment for it.

Mo chroí, my heart.  Same words, different meaning.  My children are still mo chroí, of course.  They are also the reason I am getting all of this testing done.  I want to be here a long time for them and if they are at risk for a genetic disease I want them to know as early as possible.  You can feel your heart thudding away every time you put your hand to your chest, but do you have any idea what’s really going on in there?  I didn’t.  But I will. 

xoxo

Jen