A Way to be Better, a Better U..

In the saddest of ways, I learned about a new genetic kind of heart defect this morning.  It is called Brugada Syndrome, and one of the things that it does is cause sudden cardiac death do to sudden changes in the heart rhythm.  Learning about this hereditary heart disease caused me to think more about my own heart defect - an atrial septal defect.  The hole in my heart is luckily now closed.  It has been more than 2 years since my surgery, and almost three years since my stroke, but the emotions are still raw when I hear about people who are affected by heart or stroke-related illnesses.

Heart Disease is the nation's #1 leading cause of death and stroke is #3.  This is so frustrating because by making small changes in one's life, these numbers can decrease.  The American Heart Association just started a National Campaign to literally change and save lives:  the Go Red for Women:  Better U Campaign.

There are so many ways that you can make a difference for yourself and for the lives of others but for today, for right now, I am going to focus on wearing RED.  When I see people wearing red, I know that they are taking a stand against heart disease, heart-related problems, and stroke.  However, never has it meant so much to me as it did on Friday, 5 June 2009.  You see, my boyfriend, who literally saved my life on July 21, 2006 when I had my stroke, graduated with his PhD from MIT this past Friday.  MIT students have a tradition of decorating their caps with inventions - outrageous inventions.  However, when I saw Hector walking in his gown, hood, and cap, he did not have any kind of invention on his cap.  He looked grand, handsome, and all together serious as he stood out on Killian Court.  And as he caught my eye, he tipped his head...
Go_red and there it was.  The Red Dress that stands for everything that means life to me following my stroke and open heart surgery.

So join me and the American Heart Association's Better U Campaign.  Go Red, and live a healthier life. today.

Through the eyes of a 7 year old

"What would you do if you had a stroke in Africa?" He asked me.
"Try to get to a hospital." I answered, even though I knew so much of it depended on where exactly I was when in Africa.
"What would you do if you had a stroke in Morocco?" He knew I spent almost two weeks in Morocco last summer.
"Well, I would try to get to a hospital." I answered.  And in fact, I almost did have to go to a hospital when I was in Marrakesh since I got serious heat stroke (after decided to work out everyday in the 115F weather).

But his questions started me thinking.  I had my stroke in Cambridge, MA.  In fact, it happened on the Harvard Business School Campus (I suppose if you are going to have a stroke, that is as good of a place as any...) Once we arrived at the hospital, I received immediate medical care and now have minimal, if any, residual affects from the stroke.  But this is not always the case.  What if I did have the stroke while traveling?  Would I be ok?  Would the care have been as stellar?  I honestly cannot say.  Perhaps, is my answer.  However I am only familiar with Boston's medical hospitals and research capacities.  I have had great experiences.  I am lucky.  I can only hope the same is true for others.

Grey Matters

I finally watched the Season Finale of Grey's Anatomy.  Yes, I am a fan, and I love the show.  I remember the fall before my heart surgery I recorded every episode so that I would have something to watch as I recovered.  It so happened that some complicated heart surgeries were being conducted that season, so I was particularly interested in the shows in 2006.  But back to the 2009 Season Finale...

Izzy Stevens was getting wheeled in for surgery - a risky one - and while I am not here to write about the tear jerking ending of the show, the topic of DNR (or Do not Resuscitate) emerged several times throughout the 120 minute episode.  This is a topic I became quite familiar with as I prepared for open heart surgery in 2006.  I would be willing to bet that most healthy 33-year olds are not spending a lot of time thinking about DNRs.  Perhaps I am wrong, but until I was told on August 12, 2006 that I would be having heart surgery 4 months later to the day, I spent little time thinking about the "what ifs".  I had undergone three knee operations and one back surgery (yes, I am like the Bionic Woman...) prior to my heart surgery, but I never took the time to think about what might go wrong.  The knee operations seemed too benin, and the back, while serious, occurred when I was 19 years old.  Although 33 is young, 19 is almost infantile (in a good way of course) in respect to 33.  So at that point in time I worried not about a DNR but instead about when I could get back to the gym etc.

But for my heart it was so different.  It had to do with being put on heart-lung bypass (Cardiopulmonary bypass), which literally takes over the job of the heart and lungs by circulating the blood throughout the body while surgery on the heart is taking place.  In my instance an incision was made in my femoral artery and the machine was attached there.  For the surgery, the doctor had to go into my heart and quite literally sew the hole in my heart closed (blue nylon thread in case you are wondering... I asked).  I could not stop thinking about something going wrong.  The doctor - incredibly well respected not only in Boston, but the field - put me at ease, but that did not stop me from conducting multiple web searches on an hourly basis to find out the pros and cons of heart-lung bypass, open heart surgery, and side affects after the surgery.

So this brings me back to Grey's Anatomy.  Izzy was getting wheeled down the hall, she lay on the gurney, and her husband of several hours stood by her side angry with her for signing a DNR form.  I listened to her reasoning, and it resonated a little too much.  Having the man she loved by her side as she was wheeled into surgery also resonated a little too much, as that was the last thing I remembered before my surgery.  I thought long and hard about the possibilities of not waking up or if I did wake up, not being me, being someone else entirely.  Perhaps someone who would be unable to recognize my friends, family, and even myself.  Prior to my surgery, I had already suffered a stroke, which is what brought me to the point of heart surgery in the first place.  I certainly did not need another major medical episode.

Yes, I thought long and hard about what the DNR would mean - for me and for my family.  It was not an easy decision, but it was the right one for me.  So as Izzy, from Grey's, was wheeled down the hallway and she raised all the reasons for her signing the DNR form, I related.  I felt like I was right there by her side, and that December 2006 was yesterday.  These seemingly far away decisions, the ones you think that you will never have to make, the ones that other people make, you might have to make those decisions one day.  They might be staring you in the face.  The writers at Grey's do a great job - it is entertaining and allows me to shut off after a long day at work.  However this particular episode was real.  It was like "real life" (at least the DNR decision making).  So think about all of those things that you might think do not matter... They do, and so do you.

Back to School at Friends

I walked down the hallways, and they really were not that different then they were a little more than 20 yrs ago.  Kids still ran up and down them, the plaques that we all created our final year covered the walls, and teachers bent over the students patiently explaining a sentence in a book or an addition problem.  The headmaster took me to the eighth graders, and I cautiously walked in...  I used to love outside speakers because that meant I did not have to do my work, but I am not sure I ever really paid any attention to what they said.

After introductions, I started the story telling...a story about a young woman who lost her words.  She then eventually found out her heart was broken, she truly had a broken heart that needed to be fixed.  The students' eyes all looked at me as I tried to make an impression on the young adults.  I told them the importance of time (the first three hours are so critical when someone is having a stroke), I asked them if they knew the symptoms or signs of stroke (many of them did), I asked if any of them knew someone who had suffered a stroke (unfortunately the answer for several of them was yes...)  The questions they asked were more perceptive and better than I could have hoped... Did I have any lasting affects? How long did the effects of the stroke last? How did I feel about open heart surgery?  What was the recovery like?  And on and on...

It was exactly what I wanted.  I wanted to get to know them and I wanted them to know me so that when I spoke to them at their Class Day it was a bit more personal and it would make some kind of impression. However, I also told them that I did not remember who gave me my Class Day speech, and it was just fine if after the days, weeks, and years, they came to forget me.  However, what they should never forget is the importance of the signs and symptoms of stroke.  So:

Josephine, Anya, Tim, Molly, Katie, Kim, Sophie, Rachel, Connor, Tristan, Blake, Trevor, Reilly,Michelle, TJ, Oliver, Thomas, Tim, Celeste, Stephanie, Kelsi, JC, Jenna, Kristen, Mia, Anne... 

please do not forgot. Know what to do in case you are every faced with a situation like I was faced.

OK, now I have to work on that Class Day speech for all of you!

Stroke Awareness...What would you do?


It happens suddenly, out of the blue, from nowhere.  You know that you want to talk, the words are there, somewhere, but they just cannot come out.  He starts to ask you questions: what is your name, what is his name, what day is it.  Really, you  know that these answers are somewhere, but you are unable to find them, and even worse, you know that you are unable to get them.  One or two letters might float around in your head, and somehow they relate to the questions being posed to you, but you can't reach them and pull them to your mouth in order for actual sense to be made.  It is as if someone shut off your ability to speak.  A switched went from "on" to "off".

Suddenly, you are brought to the hospital, and there is a flurry of activity around you.  You are rushed into the nurse's triage room, and as your right arm is being prepared for a line to go in, the nurse is asking you questions.  Basic questions,  However, you cannot answer as the words are gone.  Your blood pressure starts to raise as you being increasingly upset, and begin to understand that something is seriously wrong.  The IV is in and you see the dark ruby color fill up have of the line.  The nurse asks your name. You cannot answer.  Your age, nope, and hopefully you look good enough that she will guess lower than it actually is... Your address... Luckily H knows these answers, and he fills in the blank when needed.

Again, more activity, and you are placed on a gurney and brought into the CT-Scan room.  The test occurs, but no one gives you any information.  In your head you try over and over again to talk, and try to make sense of words, it all begins with the alphabet.  Maybe you can do the A-B-Cs?  And just as you try and get the first 6 letters out, you are asked to stop, and rest. They insist that you try to relax as you need to decrease your blood pressure.

As you lie on the gurney, with H by your side after the first test, the ER doctor walks in - tall, blond thinning hair, angular face, creases around his eyes.  And his eyes are kind, probably due to his job.  He pulls up a stool and sits down one your right side.  His face is merely inches from yours.  He starts to ask you questions: your age, what activity you did that day, have you taken any medication, specifically, have you taken cocaine?  You desperately shake your head no, and can hardly believe the question.

He tells you that he sees something that he does not like something on the CT-Scan, and he would like to do another one, this time with contrast.  You look into his eyes and nod.  What else can you do?  Your options are not very plentiful.

A nurse comes in and takes you back down the hallway and in to the CT-Scan room.  She explains that the contrast is going to warm you, even make you feel hot. No one really lets you move, and you are limited to that gurney.  She leaves the room, and there you are alone.  With your thoughts and nothing else.  Still no voice to explain your fear, frustration, or the beginning of a massive headache that would be more painful than you could possibly explain.  Following the nurse's cue, you feel the warm rush of the contrast liquid pour into your vein and spread out into your chest, pelvic area, arms and legs.  It does not last more than a few seconds, but for some reason feel like a lot longer.

She takes you back to your room, and after a few minutes the doctor reemerges.  His face is grim, and there is a shadow sadness over his eyes.  He pulls the stool up again to your right side, and he sits down.

"Lily, you've had a stroke. You have a 1.5 cm blood clot in your head." And after hearing those words, your life is forever changed.

May is National Stroke Awareness Month.  Be Aware. Know the Signs, the Symptoms.


What were you yesterday?  Recovering from the Boston Marathon?  Appreciating the spring weather? Or among the hundreds of American Heart Association and American Stroke Association Advocates on Capitol Hill speaking to members of Congress about funding, education, and research for the Nation's number one and number three killer.  Yes, you heard me.  Heart disease kills more people than anything else in the United States, and stroke is number three.   What exactly does that mean and why does this matter?  Good question!  One person dies every 37 seconds from cardiovascular disease (American Heart Association).

Over the past few days Hector and I were lucky enough to go to Capitol Hill with the AHA and ASA to speak to members of Congress about these funding efforts.  While on the Hill we meet exceptional people from all over the country with heart disease, heart defect, and stroke.  To see these people made everything so very real.  You would think that it would be real enough for me after having had a stroke and open heart surgery.  But meeting other "like" people really changed so much.  None of these efforts would be possible without the support of the American Heart and American Stroke Associations.  I especially have to thank the team from Massachusetts... Boston_aha

Aside from thanking the AHA and ASA, I have to thank Hector who not only saved me (literally) when I had my stroke, but gives me support every single day in my efforts to raise awareness around stroke and heart education.Lub_hhh Ok, enough already, it sounds as if I am giving an Oscar's speech or something!

In any event, the past few days were extraordinary in every sense of the word.  For more information please check out these sites:

National Institutes of Health
Center for Disease Control

Go Red on the Capitol

One of them had a heart transplant more than 7 years ago, he was about 60; a college friend say by his side for support.  An 11 year old girl had Kawasaki Disease; she sat at the table with her 14 year-old sister and her parents.  A woman from the West Coast had several reconstructive surgeries done to her heart including repair to her mitral valve; her son whose favorite subject is math sat by her side and had a "Caretaker" sticker on his nametag (an 8th grader as a caretaker... so hard to imagine!)

She sat back and looked at everyone around the table.  She then listened to the stories in the room...a three-year old who suffered a stroke in-utero, a 10-year old who had already undergone several open-heart surgeries and probably had more to come.  A woman in her 30s who already suffered 3 strokes.  Everyone sitting together for one cause.  Lobby Day on the Hill.  She knew why she went Red.  She held on to H's hand tighter as she heard people's stories, each one cutting deeper and deeper in her own heart.  She knew what each person had gone through because she had her own story, but suddenly, it did not matter as much as it once did.  She knew what it was like to be understood, and to understand.  She looked forward to lobbying for increased funding for heart disease and stroke research.  When she looked around the room again and saw the man in the grey suit holding his right hand because he could not lift it, and the survivors walking with the canes because of partial paralysis, she knew how much the funding was and is needed...

D.C. and the AHA

The Cherry Blossoms have gone - they are no longer on the trees; they are fragile and delicate, and can disappear right before your eyes.  That means that the tourists who have come by the hundreds of thousands to Washington, D.C. to see the event have also gone.  However, the city is still full.  It is full of life. 

As the plane touched down shortly before noon this morning I realized just how much life really existed within the Beltway.  Major decisions are made in the District - and over the next few days I will have the privilege to join hundreds of other American Heart Association advocates to discuss future decisions: Health Care Reform, NIH Heart and Stroke Research, and CDC Heart Disease and Stroke Prevention Program.

All efforts to increase awareness around the Nation's number one killer.  Heart Disease.  And the Nation's number three killer.  Stroke.

Almost three years ago at 33 I had a stroke due to a previously undiagnosed congenital heart defect, and this is why I am here today: to advocate for heart and stroke awareness and education.  After all, a heart can go just as quickly as those cherry blossoms if you do not take the time to appreciate it while it is there.

On the Hill

There are only a few more days until H and I go to the Hill  in D.C.  I was invited to go to Capitol Hill with the American Heart Association/American Stroke Association to meet with members of Congress.  We are going to talk about the importance of education and funding around heart disease and stroke.  I have my red dress, I have dinner reservations on Sunday night at one of Jose Andres' restaurants, I have planned my running route around the Mall on Monday morning so that I can appreciate the monuments in all of their glory, and now I just have to figure out what the hell I am going to say to all of those people when I meet them.  I have told my story time and time again - girl teaches fitness class, girl has stroke, doctors fine hole in heart, girl makes decision to have open heart surgery... etc.

But it really is so much more than that, and certainly more than can be summed up in a few minutes, words, or friendly handshakes.  It is a life a story, and one that I am lucky enough to share.  So maybe I will have a piece of chocolate cake and sort this whole thing out... Between now and then, I cannot really think of anything better to do anyway!P1019931

The 10th Floor

She stood in the elevator today on her way to pick up a rx from her doctor.  The elevators were all too familiar to her as was the scent of the hand disinfectant dispensers that were located strategically all over the hospital.  Each floor has a different purpose, and a little sign inside and outside of the elevators reminds people where they need to be going.  Some floors for general practitioners, others house doctors that will sort out your bone and other ortho problems, optometry is on floor 4 or 5... and then there is the 10th floor.  As she rode the elevator up to collect the prescription, she remembered her visit on the 10th floor.  Almost 3 years ago she to make a trip to this floor.  Shortly after her stroke, she saw a lot of specialists and those on the 10th floor were no exception.  However, they did bring a shocking reality to her situation.  You see, the 10th floor was hematology and radiology.  She suffered a stroke, so she did not understand why she needed to be seen by anyone on this floor.  She quickly learned that she needed to talk to a hematologist before going on prescribed blood thinners.

It was not so much the appointment that shocked her, but the severity of what else was taking place around her as she waited for the appointment.  She needed to have her blood tested to see if it had made her sick. Perhaps it was indeed what caused the stroke, but until further tests took place, she had no way of knowing.  As she waited for 2 hours (no, she was not early, but the doctor was very, very late indeed...), she had a great deal of time to absorb everything around her.

Oh, the 10th floor also has the Windows of Hope shop.  She glanced into the window of the shop from time to time, but felt as if she was trying to gain access to something that she did not have an invitation to...  As the carts of cookies and juice were wheeled around, she started to feel sick.  Her life took on a new meaning, she started to realize it importance and beauty.  Guilt ran through her entire body as she looked into the eyes of the patients.  In a room to the right were the chairs with patients receiving their chemotherapy treatments.  She felt so out of place, and had seen too much - too much pain, too much suffering, and too much pretending, and not enough beauty.  She whispered a quiet "I'm sorry" to herself and anyone and everyone who could her hear.  And in her mind, she gave them all something beautiful.