Please Help Me Save Someone

Fundraising is a funny thing when you don’t like to ask people for money.  You see, I remember the days when I thought $5 was too small of a donation to make a difference to an organization so if I couldn’t donate $50 or more I would just not donate.  It seems more ridiculous each time I remember that way of thinking.   Many people still think that way too.  I am here to tell you that $5, $1, or any amount of money does make a difference.  All of those one dollar donations add up and help the American Heart Association research ways to end heart disease, save the lives of individuals battling heart disease, and then educate everyone about heart disease.  Did you know that other than the federal government, the American Heart Association funds the most research in the United States?  Crazy, huh!

So, four years ago I decided to start selling shirts for my American Heart Association Heart Walk Team, Team Cardioco.  I figured if I could find a vendor to give me great prices and have a fabulous design then people would not only be donating money to the American Heart Association but they would also get something for their money.  For the past two years, Team Cardioco has partnered with an amazing local company named Bengals and Bandits who not only sell our shirts online but they also negotiate incredible prices for me.  Design wise, our outrageously talented friend Jason Feirman has designed the shirts for two years (shout out to Jason for also building the relationship with Bengals and Bandits).  Since not everyone actually walks in the Heart Walk, we wanted a shirt that would spread awareness but also look fantastic.  What does this mean for you all?  Well….can you reach into your pockets and purchase a shirt for $16?  You’ll thank me when you put it on and see how soft it is.  Want to do something else in addition to buying a shirt?  You can also donate to my Heart Walk Team…please won’t you help me reach my fundraising goal of $3,500????

When I was diagnosed with heart failure at the age of 30, Dr. Wonderful said “10 years ago we would have sent you home to live your last few months/years and prepare your last wishes.”  People…that was in 2010!!  Can you believe that just in the year 2000 there would have been very little that science could have done to save my life?  Yes….the same science that has developed vaccines to end polio, protect against chickenpox, grown artificial heart valves…they would have sent me home to die.  Yes, die.  My hubby would have been widower and my baby girl motherless.  Simply put….the research done by the American Heart Association saved my life.  Please, please help save the life of someone else.

The two links below will give you that opportunity.  I am asking as a friend, a mother, a daughter, a wife, an anal retentive, Type A personality individual for you to donate in some way to save the life of someone you may never meet.  The good news is….you’ve met me!  I think I’m a pretty good investment, don’t you?

Go Buy a Shirt

Go Donate to Team Cardioco Heart Walk Team



The Triathlete

I have been asking a very special and sweet friend of mine to share her heart disease story on my blog for a while now.  I met her after I got an email from another amazing friend.  The subject of that email was “Heart Disease Sucks.”  She could not have been more spot on.  Everyone…..if you think heart disease can’t happen to you, well, you are wrong.  This story will definitely change who you think the face of heart disease is…….here is my wonderful friend’s story!

My name is Whitney Graves and I have heart disease. Even a year and a half post-diagnosis, I still have a hard time believing this fact. As an adult, I have consciously and consistently maintained a generally healthy diet. I don’t believe I have ordered one fried food dish since college. And exercise has always been a big part of my life. As a marathon runner and triathlete, I thought of my body as being in the best shape of my life. I would have bet thousands of dollars that my heart was way stronger and healthier than any of my family members and that I could have passed any stress test with flying colors. In August of 2012, the week after my 35th birthday, I got a diagnosis that would completely change my lifestyle, my identity and my outlook on life.

At the age of 14, I found my passion for running. I started going to a woman’s health club called Goudeau’s on College Drive. I would run on the treadmill while my mom did an aerobics class. I found this release better than any other, so therapeutic, and I could zone out after a long day with my Walkman or watch a talk show on one of the 20 screens on the TV wall while I put in a good hour of sweaty, glorious pain.

Fast forward to early 2010, still running several times a week. A good friend and fitness trainer of mine suggested I run a half marathon. I had been going through a trying year – I had to have reconstructive jaw joint surgery in Florida and my jaw had to be wired shut for a good six months. Although I was still on a liquid diet and still had a couple more months banded shut, I decided to set this goal that would make me feel good in the midst of the whole jaw situation. Four weeks later, I ran the half marathon in the hills of St. Francisville and won first place. As the next couple of years passed I continued to race competitively, but wondered why I could never really get much faster. I often felt my legs could go harder but my breathing couldn’t catch up. That first race remained my PR (personal record).
At the end of 2011, I started having episodes where I would suddenly, out of the blue, feel shortness of breath in the middle of a run. Just for about 20 seconds. Maybe once every 2 weeks. A feeling like I couldn’t get enough air. I would stop for a second and it would go away as suddenly as it had appeared. Strange, what is that??! I went in to see my general doctor. Running friends had suggested maybe I had exercise induced asthma. He was skeptical, but gave me an inhaler to use before my runs. It didn’t help, the episodes kept popping up.
I ran a half marathon that following January, and with one mile left and in the lead in my age group, I suddenly lost my breath and had to stop and lean over with my hands on my knees. I’ve never had a panic attack before, but I imagined it must feel like that – wanting to breathe into a paper bag like I’ve seen on TV. This one scared me enough to ask my general doctor make an appointment with a pulmonologist. This doctor ran a treadmill test on me and said nothing was wrong with my lungs. He probably thought I was another hypochondriac.

By July, the episodes were happening 50% of the time. Some mild and some where I had to stop for a minute. But the symptoms changed that month. The breathlessness became dizziness. The feeling you get after twirling around in circles for thirty seconds like you did as a kid. I started to look at my heart rate monitor on my watch when this happened and made the discovery that my heart rate was shooting up from 155ish to 210-240 during the episodes. Aha! Mystery solved, it was my heart acting up this whole time.
Off to the cardiologist I go, where he diagnosed me with tachycardia (heart rate that exceeds the normal range). It is a fairly common problem and is very treatable with beta blockers. I had a lower level tachycardia episode while on the treadmill in his office and an abnormal EKG. Nothing too worrisome that the beta blockers couldn’t control. He sent me home with a special monitor glued to my chest to wear for two weeks. He even suggested I run a race or triathlon if there was a local one that weekend. He was curious to see some data while pushing myself for an extended period of time.

Several days later, I decided to visit my parents at their house and do my run on their treadmill. I ended up seeing stars and blacking out right in the middle of it. Crashed into a table. Needless to say, that was my last run. My doctor would later tell me that my heart rate reached around 350 during that last episode.

I was sent to an electrophysiologist, a surgeon that treats the electrical activities and arrhythmias of the heart. I got a call from my cardiologist a couple of days later. My two doctors had thought it was best that I have an MRI the next day. He stressed that I not do any form of exercise before then. They wanted to check for a very serious disease. He said that it is very rare, therefore he doubted that I had it, but they just wanted to rule it out. The next day I had the MRI and my doc called me two hours after the procedure and told me that I did in fact have the rare disease – Arrythmogenic Right Ventricular Dysplasia. Basically, my right ventricle is turning to scar tissue and cardio exercise makes it progress.

Strings were pulled to get me into Johns Hopkins the following week. I flew home to have a defibrillator implanted before the week was over.  As devastating as this diagnosis was, I was told many times by different doctors and staff how lucky I was to be alive. They said that because my heart muscle was so strong from being healthy and an endurance athlete, I survived all those months while my heart struggled to beat correctly with the growing scar tissue. Around 80% of people that have ARVD die suddenly during exercise before ever experiencing symptoms. I had symptoms for nine months and by the grace of God had time to go from doctor to doctor until I had answers.

My special, wonderful friendship with Mary Leah has been priceless to me over the last year and a half. Especially in the beginning, when my cousin introduced her to me as a fellow heart patient. She swooped into my life like an angel at the right time. From day one, she offered to walk this journey with me. She took off of work and sat through the long surgery after only meeting me days before. Talking whenever I needed advice, just being her awesome, positive self. She has hinted and asked several times that I share my story on her blog. This month – national women’s heart disease awareness month – I truly realized that because I was given a miracle it is my duty as a survivor to share my story. To share it so that others can not only learn about what symptoms to look for, but to reiterate to everyone that when something feels really “off” and you have been told you are fine by doctors, be your own advocate and get to the bottom of it. It could literally save your life. Heart disease is the number one killer of women. Although my disease wasn’t brought on by an unhealthy lifestyle, so much heart disease can be prevented by good diet and exercise. Take care of yourselves! Know your numbers and your family history. Education is key in helping heart disease statistics drop!

****How gorgeous is Whitney!  


The Note

I don’t keep lots of things.  I get rid of clothes like it’s my second job.  I am constantly reorganizing things.  I thrive on order.  A few of the things that I do save are:  cards, notes, and letters.  I don’t save every single one, but I save most of them.  One note that I have kept with me everyday since November 11, 2010 is this one. 


I found this note in my wallet the morning of my first cardiology visit.  For days leading up to my appointment with Dr. Wonderful, I kept telling my hubby how nervous I was.  So when I went to pay for my visit, I saw this little handwritten note from him:  “Mary Leah, Your have a wonderful heart.  I know you’ll do great at the doc today.  ILU, Jeremy.”  

Fast forward to one hour later and I was trying to string together a coherent sentence when I was calling him at work.  My echo tech let me call him from the testing room (thank goodness).  When I finally got someone on the phone at his office they told me he was teaching and couldn’t come to the phone, to which I replied through many tears, “It’s an emergency.”  What seemed like hours later, which was probably less than a minute, I struggled to get out the following words:  “You need to come to [Dr. Wonderful’s] office.  It’s not good.”  Then I called my mom, and while I can’t remember exactly what I said I do remember her saying, “I’m on my way.” 

My amazing PA walked back into the testing room and said, “If we can do anything for you, please just let us know.”  I begged her through many tears and said, “Please, please just fix it.”  They walked me out to the waiting room where I waited for my hubby and mom to get there.  I sat in the first chair by the door.  I was alone.  All alone.  I felt like the world was going in slow motion.  I sat silently as tears streamed down my face.  My dad was about to board a plane so I told him to not turn around.  It wouldn’t change anything and it was an important trip. 

As soon as my mom and hubby got there, they brought us all back into an examining room.  I used to always get so frustrated when  doctors were late for my appointments.  Didn’t they understand how important my time was?  After all, I am paying them, right?  Well, that perception changed that day because for over an hour my sweet Dr. Wonderful sat with all three of us and explained what was going on and what it mean for our lives.  I know every single patient for the rest of the day had to wait much longer than they wanted because Dr. Wonderful sat with me for so long.  I will never forget the look on his face.  Shock.  Utter shock.  None of us could believe we were having this conversation.  I was the perfect picture of health on paper, but now we knew the truth.  My heart was failing.

I could hardly believe that less than 24 hours before this moment I was studying for a doctoral statistics quiz and finalizing our plans for baby Coconut’s first trip to Disney in less than two weeks.  I was normal (well….some might question that).  But now, I was in heart failure.  I had 10 percent of my heart functioning.  Medicine after medicine was written on scripts.  Fluid restriction.  Exercise restriction.  No more pregnancies.  Potential surgery.  All of this happened between 8:30am and 11:00am.  Oh….and I had a broken ankle and had a cast on too.  Talk about 50 shades of a hot mess.  I left Dr. Wonderful’s office hooked up to a mobile heart monitor in an absolute daze while still trying to reconcile what had just happened.

How could this be?  I had the note to prove that I had a “wonderful heart.”  If it’s written down, then it must be true, right?  I held this note in my hands and cried.  I often still cry when I look at this note because it is a reminder of what used to be.  Those days before I was fighting heart disease.  The moments when I didn’t have to worry about a potential impending shock from my defibrillator.  The future plans of more kids that have floated into the wind.  This note reminds me of what used to be. 

The note also reminds me that my family could have found out about my heart disease post mortem had I not gone in for this checkup.  Sure.  It is totally inconvenient to have heart disease.  It makes lots of things in life much harder.  I have to battle through many situations with just a positive attitude because goodness knows my body wouldn’t make it otherwise.  I am reminded that I am not a statistic.  I am a survivor.  I am able to read these words because I did go to see a cardiologist.  I did what I needed to do to be my best advocate.  So while this note reminds of what has changed in my life and sometimes what I feel like I have lost, it is also reminds of what I have gained.  Life.  On November 11, 2010, I was given the gift of life.  I was given the chance to live.

Give yourself and the women you love in your life a chance to live.  Show the world that you don’t want heart disease to kill any more women.  Wear Red with me this Friday, February 7th and remember my note.  The note that reminds me that I do have a wonderful heart.  While it might be broken, it is still my wonderful heart.

Planning the Funeral

Death.  It is always tragic, expected or unexpected.  There is never rejoicing, only heartbreak.  No one is ever prepared, despite what they may say.  Some people say, “They’ve lived a long life.”  Is a life ever really long enough?  Not for the ones left behind.  Death.  Have you ever had to think about yours?

I have.  I have planned my funeral.  I have selected my music and the people I would like to sing them.  I want “You Are My Sunshine” specifically sung acoustic for Coconut because I’ve sung that to her every day of her life.  I have selected the scriptures I want read and by whom.  I have chosen what I would like to wear.  I know where I will be buried and have the plot already.  I have written instructions for my hubby and baby Coconut.  I have put some “wishes” down as to what I would like for my family.  I have pretty much thought about it all.  It is all handwritten in my black, leather journal.  It is written a few pages after my 366 days of gratitude from 2012 (no worries…I can count…this was a leap year so I got one extra day).  It is in the top of my closet.  These are things I have had to think about and think about deliberately.

Why?  Because heart disease is the number one killer of women, and I have it.  I did everything right.  I ate well.  I exercised.  I knew my numbers.  I got vaccinated like I was supposed to.  So why am I the one planning the funeral?  Why isn’t everyone else who hasn’t taken care of their bodies?  Why do they get to forget about their funerals?  Simple.  Heart disease doesn’t care who you are.  It can be unpredictable.  Heart disease kills one woman every minute of every day.  What does that mean?  Well, if you do the math, it means that by the end of the year 2014 there will be 525,949 funerals planned for women killed by heart disease (oh….and this is just in America by the way).  If you counted each of these women killed by heart disease as one mile, that would mean these women would go around the earth 21.15 times (the earth is 24,859.82 miles around).  Seems pretty impossible, right?  Well, it’s not.  This is a reality.  It is a reality that I live every single day.  And just imagine how the families of those 525,949 women feel.  I have a word for it.  Devastated. 

Sure, go ahead.  Call me dramatic.  Call me a downer.  Call me whatever you want.  But you’ll never be able to tell me I didn’t try hard enough to get people to take heart disease seriously.  This is truly my life’s work.  To have people get it,  To really grasp the real meaning of one woman dying every single minute from heart disease.  Yes, I am a broken record.  I keep saying the same things over and over again.  So, have you listened?  Have you had your heart checked?  Have you shared this knowledge with other people?  Or are you just like most people and waiting for a real “reason” to go see the cardiologist?  I really hope that you aren’t seeing the doctor post mortem. 

I want nothing more in this life than to see my baby girl grow up and live a long, healthy, and happy life.  I want to see my future grandkids.  I want to go to Disney World a few more times.  I want to grow old with my hubby and gallivant around the world on exciting adventures when we retire one day.  But I know what I am up against.  I know that I am in the battle of my life and for my life against a vicious enemy.  I fight to beat my heart disease and to make a difference in the lives of others, especially women.  It is never too late to start taking care of yourself.  Start today, and show the world that your heart matters by wearing red on Friday, February 7th. Wear Red for all of the women you love.  Wear Red for my heart sister ReKisha who lost her battle against heart disease before she saw her baby boy turn 3.  Wear Red for me.


In August of 2013, I received my first good news about my heart in almost three years, and boy was it worth the wait.  When you’ve received nothing short of devastating news at’s.appointment for three years, I felt like I could finally breathe a little bit again.  I even got clearance to start exercising, run a 5K!  We started walking, taking things one step at a time.  My hubby never felt comfortable with me walking alone.  Selfishly, this was really irritating because I wanted to be independent.  Logically, I knew this was a wise decision. 

When I took a visit to Boston one month after my good news, we walked almost 5 miles a day some days.  As a side note, I will say that Boston has been one of my most favorite cities to ever visit.  Okay….back to walking.  I felt fine walking even though I was really exhausted each day, but that was to be expected.  In my heart I wanted to believe everything was still going okay, but in my head I started to worry just a little.

A few months go by, life takes over, I don’t have time to train hard for a 5K because work has gotten really busy for me and my hubby (he’s loving his new job) and by the time we can all head out together it’s dinner time, then bath time, then bed time, and you know, all of those things we have to do to keep a house and family in some kind of order.  Before I know it, the holidays are closing in, and I catch a nasty stomach bug.  The kind of stomach bug that when you get on the scale the next day and all you’ve lost is 2 pounds you think, “Really, that’s it after all of that hard work” (note:  I am not trying to lose weight so spare me any lecture).  I ran a really high fever of almost 103 degrees for 24 hours, but I slowly bounced back.

Two days after this virus, I got an unexpected call from my wonderful Heart Pacer Clinic nurse, Kay.  This was the first time in two years she had called me out of the blue.  She started off telling me she needed to set an appointment for me, but she followed it up with that I have been having spells of Supraventricular Tachycardia (SVT) since September (I really was hoping she would say just for a few days because I could blame it on that stomach virus, but that was not to be the case).  SVT is a condition that presents a rapid heart rhythm originating at or above the atrioventricular node (AV node).  She also told me that when I’m not having SVT my heart rate is running high in the middle of the night while I’m asleep.  All very odd.  I’ve never had arrhythmia problems.  My nurse sweetly told me I needed to take it easy, no major exercise, blah, blah, blah.  Irritating.  

Why is this important?  Well, it explained why I was feeling off but couldn’t quite put my finger on it.  I had gotten comfortable in the idea that my doctor at the Cleveland Clinic gave me good news.  I took this news as nothing else bad would ever happen again.  I naively told myself that no one would ever give me bad news again.  Let’s be honest, I was in denial.  However, this does remind me that I was still subconsciously listening to my body rather than trying to prove a point.  What was I trying to prove?  I was trying to prove that I could run a 5K.  Frankly, I’m pretty pissed that I can’t do it.  Why?  It gets irritating when heart disease prevents you from doing what you want to do.

Like anyone fighting any type of battle, there are highs and lows.  It is hard to accept you are in a low when the high feels so great.  Although I’m still stable, I don’t like that I have a new aspect to my heart disease.  However, I am so thankful I am protected by my ICD and that I know these things are happening.  You can’t change what you don’t know about.  

So, there you have it.  My confession.  My sad, sad confession that I’ve been told I can’t train for a 5K.  I had so hoped my first 5K would be this year’s Capital Area Heart Walk, but that won’t be this year.  Maybe next time….just maybe. 


I have no idea where the time has gone.  It is as though I blinked my eyes and 2013 is coming to an end.  Here is a brief recap of 2013.  My baby Coconut is now five years old; I’m about to turn 34….the last year in my current demographic category on surveys (I’ll move to 35 and up in 2015); my hubby has been in his exciting new job for eight months; my baby sister got accepted into a fabulous college and will be a collegiate athlete; my Momee (grandmother) passed away; I served as a National Spokeswoman for the American Heart Association Go Red for Women movement; I gained weight; I’m pretty close to getting my dental accessories OFF; it has been almost three years since I got my Ph.D.; I went to Branson, MO for the first time and brought the average age down to 81.75 years; we celebrated Mardi Gras at Disney World with some of our best friends; our dogs peed on our living room rug one too many times; I’ve hugged too many friends who have lost their parents this year; I visited Boston for the first time and I loved it (Kat…I bet it’s cold tonight); my cousin Keri welcomed her fourth baby into the world, baby Grayson; my cousin Angi became a fabulous school librarian; my cousin Michele built the house of her dreams; my cousin Tara got a fabulous new haircut; my cousin Carly started selling non-toxic home products which is one of her passions; my cousin John Walker married a lovely girl named Sam; my cousin Virginia hid a few more rescue dogs in her closet from her sweet husband Philip; and my baby cousins Glynn and Grant keep growing taller further solidifying I am vertically challenged.  Whew…’s crazy to think about what has happened in one year.  I can hardly believe my godchild is going to be 7 and that my niece dances better than I do.


There is so much more to the year 2013 (I will do a year-end wrap up…hopefully before the end of 2014), but one of the things that sticks out to me the most is that I have survived three years since being diagnosed with end-stage heart failure.  I am so thankful that I got to watch baby Coconut’s first Christmas program last night.  Trust me, listening to a bunch of 4 and 5 year olds singing a Christmas carol is priceless.  It took me until the last bar of their song to figure out what they were singing, and I’m still not 100% certain….but I do know it was NOT Jingle Bells or Baby It’s Cold Outside.  There are definitely times where I get wrapped up in life and have to check my attitude of thankfulness.  Without fail, the moment I need to be reminded of my amazing blessings always comes just when I need it.   When in doubt, remember this quote by a pretty brilliant man:

“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.” — Albert Einstein

Where Where You & What Will You Do?

It is unbelievable that I was a young age 21 when 9/11 happened.  I was sleeping and my dad called me really early for what I thought was a normal wake-up call.  At first my mind was struggling in the I-was-up-to-late-last-night studying haze while he was talking to me.  After a few minutes, my brain started to comprehend what he was saying, “There has been an attack in New York City.  A plane has flown into one of the World Trade Center Towers.”  I immediately turned on my tv and started watching the news.  Tears.  Disbelief.  More Tears.  I remember the newsfeed running 24/7 for days as they covered the attacks.  This is the first time I recall hearing the word “terrorism” in my lifetime.  That word sure has become quite pervasive since then.  Where were you when your life was changed that day?

So much has changed since 9/11/01.  I’m 33.  A wife.  A mother.  I no longer hit snooze at 9:00am but at 4:00am.  The world seems so much more complicated now than it did before 9/11.  I’m sure some of that comes with age, but I think some of that also comes with the way our world has changed since that day.  Nothing will ever be the same.  The first time I flew after 9/11 I was flying into our nation’s capitol.  Thirty minutes prior to landing, all passengers were required to remain seated and not permitted to leave their seats for any reason.  We flew over the Pentagon, and I began to really understand the sacrifices made by so many. 

Because I am human, I selfishly have avoided watching the many videos and tributes that have started to come out on Facebook, the news, etc…..  Each year I relieve those feelings of sorrow, and I never want to feel that way again.  Then I have to remind myself that while I lost my sense of security and faith in some of humanity, I did not have to sacrifice a loved one.  Who am I to try and forget the pain that I experienced?  Who am I to dishonor the memory of those who lost their lives because I don’t want to feel pain?  Today, I was reminded of the great heroism, sacrifice, and servant love of those individuals that lost their lives on 9/11.  One particular story has touched me deeply; the story of Welles Crowther.

The Story of Welles Crowther

This young man gave his life for others.  As his sweet father said, “Greater love has no one than this; to lay down one’s life for one’s friends” John 15:13.  When I heard that verse in the beginning of the video, I knew God was speaking to me through this testimony because since I was 18 I have this verse written across my heart.  It was actually the Class of 1998’s class Bible verse (that would be the year I graduated).  As I watched this video, I found myself thinking, “What will I do with my life?”  Would I have the same courage as Welles to lay down my life for others?  Sometimes laying down our lives for others involves making tough choices.  This can mean making decisions that are not popular.  It can also mean taking a leap of faith because serving others is what God has called us to do.  John 15:13 certainly can apply to many aspects of life. 

How can we be of service to others?  Maybe you aren’t in a profession like a firefighter so you feel like you can’t really “serve” others.  I disagree.  I believe that our vocations, whatever they may be, can be of service to all we encounter.  We all have different gifts and talents (mine is not Geometry for the record).  BUT….how will we use these gifts and talents in our life?  How can we let the light of Christ shine through us?  Serving others, no matter how big or how small you perceive it to be can dramatically impact the lives of others.

After I saw the moving tribute to Welles, I came across another video about a project hosted by my alma mater called “The Memory Project.”  Can you imagine growing up and never having a picture of yourself?  As in no picture.  The only reflection you see of yourself may be through a broken mirror.  In today’s world filled with technology, we can forget just how fortunate we are.  We scroll through the pictures on our iPhone, upload them to Facebook with catchy filters, and then hashtag those pictures with clever comments. A friend of mine from high school has a heart for serving others, and as I watched the below video after seeing the story of Welles I was again reminded of John 15:13.  She has found a way to lay down her life and serve others where she feels called.  She is letting her light for Christ shine through her.  Imagine the impact that she is having on her high school students (oh….she’s a teacher by the way) by having a servant’s heart.

The Memory Project

As the anniversary of 9/11/01 comes to a close, let this not be the only day that we remember the sacrifice of the 2,997 individuals that died that day.  Let us honor their memory by laying down our lives and serving in whatever capacity we may find.  We are all called to different areas of ministry.   What will you do?  How will you serve?  What will be the legacy that you leave?