Torthaí

Torthaí - Results

I had my MRI many weeks ago now but it took a while to get the results.  Here they are:  
 

Moderately abnormal left ventricular dilation with moderately abnormal regional/global systolic function.

No evidence of left ventricular non-compaction.

No evidence of late gadolinium enhancement consistent with absence of scar/fibrosis.

Moderately abnormal mitral regurgitation.
 

Those are the words I see when I open my patient report up online.  I have mixed feelings.  Happy that I do not show any signs of non-compaction.  Sad that I have abnormalities.  Curious what this all means for me and my kids, anxious to know the answers….

There are no answers.  Not right now.  This will be a lifetime of checks.  MRIs.  Echocardiograms.  Medications.  Blood work.  Doctors.  Probably a valve surgery sometime in my distant future.  But that’s all ok with me.  I get to LIVE.  I am lucky and get to know about these things before I am surprised by an ‘incident’.  I get to know BEFORE I need something critically.    
 

Right now my priority is getting my blood pressure under control.  I have had high BP since my first pregnancy.  High BP is the #1 cause for heart failure even before we consider in all of my other factors.  So for right now we keep mixing medication cocktails and hope we find one that works.

We found out some great news about my Dad recently.  With the right combo of meds and lifestyle changes, his heart function had increased to 30%.  His next test will be the day after Christmas and we are hoping for another increase.  If not, he will have the defibrillator surgery.  
 

But we both keep living life.  I am anxiously awaiting my sister to begin her testing.  I love her as much as I love anyone else in this world and my worries now lie with her and making sure she will be along this lifetime ride of testing and blood work and doctors, opposed to something more serious that requires immediate attention. 
 

We have heart conditions.  We are ok.  Modern medicine is amazing.  We are working with an amazing team of doctors and I am confident in our care.  My Dads', mine, my sisters and someday, my children.

Xoxo

Jen

A tale of election results, a Golden Glove, test results and sedation…

Yesterday was such a whirlwind of a day.  I fancy myself a Democrat, and woke up to news of a Republican Governor-elect for Massachusetts and Republican control of Congress.  But in the end I consider myself an American more than a political partisan.  My moment of disappointed lasted only a second because the next article I read said that Red Sox 2b Dustin Pedroia had won his 4^th Gold Glove.  Go Sox!  (Bostonians have a way of working that into any conversation).  But enough about these things, I have bigger things on my mind.

Yesterday was the day for my cardiac MRI.  THE DAY.  This was scheduled by my cardiologist after a less than stellar echocardiogram a few weeks ago.  A thickened left chamber wall and mildly decreased heart function (along with my familial history of course) warranted further testing.  Yesterday we were having the MRI done to confirm the heart ejection fraction percentage and also check to see if I am showing any signs of LVNC like my Dad.  To say I was scared would be an understatement.  A previous MRI many years ago left me panic stricken, and I pressed the call button 6 times before they finally gave me my “last chance” and I suffered through it. 

But before we get to all that…

The election results and Sox news were not the only things I woke up to yesterday.  I also had a missed call, a text message and a Facebook message from my sister.  Mysterious “Are you awake?” messages just after 10pm (which is basically the middle of the night in our house).  No voicemail, nothing.  Now, my sister is notorious for being the person to deliver me bad news.  So my heart dropped.  She didn’t answer my text message right away and I was a ball of nerves.  When she FINALLY (10 minutes later, but it felt like for-ev-er) got back to me, it was good news.  My Dad had an echocardiogram and stress test done earlier this week and the echo showed that my Dad’s heart function was at 30%!  30%!!!  A month ago his MRI had not showed any improvement at all from the initial 15% diagnosis.  It appears they may have finally found the right combo of meds and lifestyle changes to help his heart.  Hallelujah!  He is not “out of the woods” or anything… but it was positive news for sure.  He is going to have another MRI done and then they will make a determination on his heart surgery scheduled for next week.  Eeeeep!

So now it was my turn.  I knew from my last experience that I wanted to be sedated.  My doctor gave me 4 pretty little pills to take as needed to get me though the procedure.   My Dad was kindly picking me up and driving me into Boston (payback) and I took 2 of the meds right before we left the house.  When we got to the hospital I was still “with it” and still nervous so I took 1 more.  After changing into the patient gown (WHY IN THE NAME OF ALL THAT IS HOLY ARE THESE THINGS STILL SO HIDEOUS?!?!  Is it too much to ask for a pretty paisley print?  Ugh.), I got my IV and EKG thingy’s all hooked up and in I went.  The time flew by in my hazy mental state so it wasn’t bad at all. 

On the ride home I felt very woozy and nauseous.  I had to open the window and hang my head out to keep from getting sick.  I hardly remember walking into my house but I remember going straight to my bed.  At 5pm.  While my kids where in their highchairs eating dinner.  I woke up at 3:30 this morning feeling like someone had slugged me in the head, and with the medical tape cutting off circulation on my right are from the IV.  Today I just feel no bueno!

SO now, I wait.  Fingers crossed that my heart shows no signs of LVNC.  I hope to hear back from my cardiologist tomorrow.  Also fingers crossed for my Dad’s next test and continued improvement. 

Xoxo

rith liom

rith liom - I run.

My former sister-in-law was running the 2013 Boston Marathon when the bombs went off.  My brother and 2 nieces were heading towards the finish line to see her when all hell broke loose.

It was at that moment I decided I wanted to become a runner. 

I took a year before I actually became one. 

But now, I am a runner.  I have run 6 5k's this year.  I ran 4.5 miles for the One Run for Boston.  I failed a BoldrDash obstacle course.

But I still run.

After meeting with the cardiologist, of course he went over my history and current activities.  When I mentioned running, his response was "Keep running.  Don't try to run faster.  Don't try to overdo it.  Just run.  It's the best thing you can do for your heart". 

So I do.  I will.  I am a runner.  Sometimes the runs are good, and sometimes they are bad.  But every mile is better than a mile I didn't do.  I found a group of people that accept my extra-slow running speed and invite me anyway.  So I will run.  For my heart. 

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