Home is Where the Heart Is

I am an avid tweeter - you know, Twitter?  I love it, and in fact have 2 separate accounts to match each one of my blogs.  It is not always easy staying on top of all of the info, never mind remembering to be engaged and provide updates and info that seem to be "worthy" of reading.  There is a lot of fantastic information on Twitter - likewise, there is a lot in MISinformation as well.  In my attempt to look for all things heart related, I came across HeartHub for patients, which is part of the American Heart Association (AHA).  The site is great - it is a site for patients and caregivers and it is affiliated with the AHA - who better to back a patient website with all things heart related?  You can check out your risk level for heart disease, your BMI, and review various treatment options.  But as the index page of the site came up and I started to look a bit deeper, that feeling of disappointment that so often follows every time I look at most heart and or/ stroke related material emerged.

There were no young people (that I could see anyway).  When I say young, I mean people who appear to be younger than 40-45 or so.  Speaking from personal experience, I know that strokes can and do happen to anyone no matter what you look like, what your age is, or your ethnicity.  The site reminded me of a brochure I received upon being discharged from the hospital after my stroke.  An elderly couple smiled back at me - they were sitting outside in a chair and had their arms around each other.  The heading on the brochure read "Sex after Stroke" and the couple was probably in their late 70s - early 80s.  How could I (33 at the time) possibly relate to the couple on the brochure?  I did not think that the brochure would provide alternative birth control methods since I could no longer take hormones following my stroke, and somehow, I did not think that the elderly couple would need to worry about such issues. 

The situation is similar with HeartHub .  While the information is fantastic, I would love to see someone (other than a health care professional) who is at least near my own age.

Now, don't get me wrong, there are  campaigns to which I can relate.  As I was on my run yesterday, I ran my an American Stroke Association "Choose to Move" poster.  A young healthy woman - probably in her late 20s - mid 30s - was wearing headphones, had a smile on her face, and looked as if she was dancing.  She could have been me - and I could be her.  This I related to.

In the end I suppose what matters the most is that the information is there-  people see it and remember what kinds of resources they have access to.  My only concern is that if people do not see individuals "like them" on health-related marketing materials, they may ignore the resources and think "This could never happen to me", when it fact it can, and it can hit closer to home then they could possibly imagine.


What do you choose?

It is raining...again.  This weather really does not inspire me to want to much of anything except go back underneath my covers, pull out a book, and start reading until I drift off into some kind of dream like state.  But that is certainly not my reality (at least during the work week).  Instead, my reality includes a rather active lifestyle that involves a job that has me working 10 hrs a day, several blogs on the side, a passion for cooking, and oh yeah, I am also a fitness instructor!

Most days I choose to exercise.  I do it for many reasons aside from the fact that it is a job.  However, I would be lying to you if I just wrote that it had to do with the health benefits associated with being physically active, even though that is one of the reasons I choose to exercise.  I would also be lying to you if I told you that the primary reason for my exercising was because according to the American Heart Association, 80% of cardiac events in women could be prevented if women made the RIGHT decisions in their lives, such as choosing to exercise.  These reasons are good enough for almost anyone to make the decision to change their lives and become more physically active, however after having been exercising regularly for more than half of my life, exercise is part of my life.  It is non-negotiable and happens at least 5 days / week for about 60-90 minutes each time.

Yes, there are days that I do not want to put myself through the motions of my feet pounding around Boston's pavement as I run 5 miles, or go through another set of front shoulder raises with the 8 lb weights (does anyone have some 3 lb weights in the area???), but I do it.  I might be sore the next day, my body might tell me to do yoga one day instead of running, and I will listen to that.  However, I am at the point where I feel far worse if I do not exercise versus if I do exercise.  Upon finishing my workout I feel healthy, light, clean, energetic, calm, and happy.  I take pride in myself.  Exercise and staying physically fit and active is one of those reasons. 

There are so many excuses people give so that they do not have to take that first step - none of them work for me.  1 back surgery, 3 knee operations, 1 stroke, 1 heart surgery - exercise was not the cause for any of these tragic events, but it was what helped me to recover from each and everyone of the events.  Start small, and think big.  Only you can choose to make it happen.  Your health and heart will thank you.


Work Your Heart Out

Last week I started posting about the American Heart Association's Go Red for Women: Better U Movement.  This 12-week program is a way to take steps - one at a time - to understand and learn about the importance of heart health.  The steps are literal, as they should be when one is talking about heart health.  You can make over your heart, make it stronger, make it work more efficiently, and make yourself healthier.  You might ask me how I know this information, and my first answer would be that I am a fitness instructor.  However, the more important and even relevant response is that I suffered a stroke in July 2006 and underwent open heart surgery several months later.  Because my heart had been worked, running up stadium stairs, the 1996 Chicago Marathon, hundreds of step aerobic classes, laps around tracks, hours on a treadmill, and years perfecting squats and bicep curls, I recovered from the stroke and from the heart surgery and found myself back at the gym, back to getting my heart beating like it once was, less than two weeks after the stroke and less than two months after the heart surgery*.

Yes, years of working my heart actually saved it.  Every single day that I decided to exercise and to work out, I made a decision to save myself.  Yes, the stroke happened after I taught a step aerobics class (irony at its best...) but due to previous training, and a conscious decision to take care of myself, I emerged healthier that I was before, stronger than I was before, and more aware of what I needed to do to ensure that I could forever choose to make a difference in my life and the lives of others.


*While this time-frame worked for me, it might not be the most ideal time frame for all stroke / heart surgery patients.  It is always best to check with your doctor before starting / resuming any kind of exercise program.


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.


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.


Support

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 Beat of my Heart

This week I spoke to several doctors.  The reasons for why I had the conversations varied from casual encounters to more formal appointments.  However, during all instances, one topic of discussion was my heart.  This topic often comes up since I feel my heart beat every day and feel that extra flutter whether I am sitting down relaxing or approaching mile 3 on the treadmill.  I know my heart, and am convinced that I know it better than any doctor.  No matter what they say, what I feel is what I feel.  Whether it be an extra beat, a flutter, a stop, it is something deep inside my chest that I was not aware of before my surgery.  The hypersensitivity to this muscle is not always a good thing, and sometimes sends me into panic mode, but it also gives me an appreciation for each beat and rhythm that goes on.


For this Valentine's Day I wish you a Happy Heart, and many more healthy beats, how ever fast, slow or irregular.

In health,

Lily