Five Years Old

Asd

 

(Image from http://knol.google.com/k/atrial-septal-defect#)

The string, the nylon thread that hold a small piece of my heart together is almost five years old. Anniversaries come and go in people's lives, but when I think back to where I was and what I was doing five years ago, it amazes me how things have changed. 12 December 2006 I lay in a hospital bed, tubes everywhere, pain in my chest that is truly undescrible, and fluid draining slowly from my lungs. And that little piece of string that holds it all together. Today we are living Abu Dhabi, UAE, married, and smiling in the sunshine.

As the UAE celebrates is 40th anniversary, I am going to celebrate my 5th. My 5th anniversary of being healthy and well. My 5th anniversary of understanding the importance of time, family, and friends. You should celebrate too, and I am sure you have something worth celebrating.


Running up the Hill

It was spring in DC - full on SPRING. It has yet to travel up the coast to Boston. I spent a few days in DC with the American Heart Association as part of Lobby Day - time to speak to members of Congress about the importance of funding research in the areas of heart disease and stroke research. For example, did you know that for all of the National Institutes of Health's budget only 4% goes towards heart research, and 1 % towards stroke, yet heart disease and stroke are the Nation's number 1 and 3 killer... interesting little fact.

So there we were - more than 300 people from 46 states across the country to discuss heart health and stroke awareness. It was an impressive sight to be sure: the color red could be seen from afar. I wonder whether they listened. The Hill is full of lobbiests. Every day, every hour, every minute people traipse up to Capitol Hill and pitch their stories. At times it seems that it takes more energy than it is worth. It is a steep climb up that hill - both literally and then it is figurative for those of us dealing with heart disease and stroke.

And then, in an instant it changes. The stories come out:

-A young girl born with a heart defect who subsequently suffered a stroke

-A woman who has suffered several strokes due to a rare brain disorder

-A woman who has had three open - heart surgeries for valve replacement, and knows that the valve will not outlive her, so she will need another (she is only in her 40s)

These are not stories of older white men collapsing on a golf course. These are the people who deal with heart disease and stroke every single day. I hope that our trip made the incline on the hill a little less steep for those of us who have to climb it everyday...


Staying Steady - part two

No one really tells you what you can do, but you are told what you cannot do.

You cannot put weight on your right leg for about 8 weeks.

You cannot run.  Ever. Again.

You cannot start any kind of weight bearing physical therapy until week six.

You cannot keep your brace unlocked while you sleep.

You cannot take your brace off unless you are doing physical therapy.

What about what I can do?  Well - do not worry about that now.  That is what I was told.

Well, that is not good enough for me.  I worry - I always worry about things, and when it comes to my health and well-being, I am going to worry.

I worry about making sure that I stretch my hip flexors and IT band.  I worry that I won't get enough exercise, and that all of my due diligence what I have worked on for years will completely dissipate.  I worry that I am going to completely go out of my mind sitting around all day long.  

There are small victories that happen each and every day, and that is what I have learned to hold on to - along with those victories are set backs as well.  An accidental slip meant weight shifted to my right leg.  Almost falling down a flight of stairs meant I placed weight on my right foot to balance.  Slowly, slowly, and things will hopefully fall (no pun intended) into place...

 


Staying Steady - part one

Rain, snow, ice, sleet, puddles, steps, sidewalks, cobblestones.  These are all things that have put an undeniable fear in me.  Welcome to life on crutches.  And it gets better - I am on crutches and not able to put any weight on my right leg for fear of ruining the intricate surgery my doctor recently performed to regrow the cartilage in my knee.

This is not my first adventure on these stilt-like walking apparatuses.  I have been on them several times before for this same knee, but my previous adventures where no where near as daring as this one.  Non-weight bearing for eight weeks is a challenge, and even more so for someone who tends to be very physically active.  I am used to waking up around 4:45am and hitting the gym to teach bootcamp classes and workout with my trainer.  That will not be happening for a while...That being said, I do not see my situation as an excuse to sit on my ass, feel sorry for myself, and let things go.

I have learned that simply getting around is a workout in itself.  Walking (hopping) around brings up my heart rate to almost the same level as power walking on an incline, and holding up my body on crutches throughout the day is a serious upper body exercise.  Hands, forearms, shoulders, and triceps cry out to me at the end of everyday in ways that have never happened before.  They all contract to steady my body as I move forward, sideways, and backwards in a delicate and slow balancing act just so that my right leg will not make any contact with the floor at any point in time.  These muscles contract even more in anticipation of stairs or ice outside, and exhaustion sets in once the danger passes.

Physical therapy, physical activity, and physical exhaustion are regular parts of my daily routine, however perhaps the most important in understanding that part of my leg's healing process is rest. Simple rest.  The pure act of healing is to be underestimate for the weeks to come.


Microfracture Surgery

It is not the first time I have had surgery, and it is certainly not the first time that I have had knee surgery (the fourth to be exact).  However, knee surgery is in a category by itself.  In many ways it is one of the most difficult kinds of surgeries that I know of.  It is more difficult than heart surgery.  Yes, you read that correctly.  Before you start calling me crazy, think about it a little bit.  First, I am talking about my own circumstances, as that is all I know.  When I had my open heart surgery, I (like most heart patients) was told to get up and walk around.  There is a fear that if you lie flat for too long you are at a greater risk for pneumonia.  Knee surgery?  Forget it.  I was told and am presently being told to stay off my fee, or more specifically, my foot.  You see for the next 6 wks I cannot not any weight on my right leg.  No weight AT ALL.  People have had this surgery done - NBA players Jason Kidd and Chris Webber and Olympic Skier Bode Miller.

I challenge you to do this for 24 hrs.  Take a shower and put no weight on one of your legs.  Try walking around on crutches and carrying a cup of coffee at the same time.  Well, let's just say it doesn't really work.  Now with heart surgery, I could not really carry heavy things, but I could at least bring a cup of coffee from the kitchen to the living room.

So back to the knee... microfracture surgery is a procedure where tiny holes are drilled into the bone closest to where cartilage is missing from the knee.  The goal is for the bone marrow to drain out of the hole and form a blood clot.  This clot along with your own stem cells is supposed to create new cartilage. Yes, I said your OWN STEM CELLS PEOPLE so do not go running around crazy bent out of shape about the stem cell thing - it is an amazing scientific achievement developed by Dr. Richard Steadman who is a knee surgeon in the Southwest. 

So after 6 weeks of not being able to put any weight on my leg, things should be sorted out (we hope...) However it will be a while before I know anything, months in fact.  5 weeks to go, and I am sure that there will be ups and downs. The downs happen when I (or the crutches slip) and fear runs through my entire body and I start to wonder if I have just messed everything up.  Or when I am lying still with the hip to ankle Bledsoe brace on my leg and I turn on my side and hear a small crunch in my knee and start to wonder if the clot is dissolving.  It is not a stress-free recovery.  We will see happens several months from now.


Unwelcome House Guests

You probably do not know me.  In fact to you, I might very well be a stranger.  But I am sure that you have met my close friends:  heart disease and stroke.  You might even know them better than I do, for I have only had the most intimate of relationships with them since 2006.

I met heart disease years ago, but not on a first name basis.  Heart Disease wanted to meet my grandfathers first and become close friends with them before truly stepping through the doors to my own life.  When I was a small child I remember tracing the long scar on my maternal grandfather’s chest with my fingers asking him to tell me the story behind the scar over and over again.  Such a big scar, and such little fingers trying to understand the depth of what lay behind the incision.

In the sixth grade, heart disease decided to visit again.  This time, to my paternal grandfather.  The visit was such a surprise that we did not have time to plan… heart disease just came in, and when it left, it decided to take my grandfather from us.  However, at that point in time, I still had small hands, and there were no scars to trace with my fingers, we only had pain left behind.

Stroke then decided to stop by, and visited my maternal grandfather.  Twice.  The second visit devastated us all – however, it devastated my grandfather the most, as it left him incapacitated and bedridden for 14 years and eventually too sick to keep fighting.

I suppose my family gained popularity and status in certain circles, because both heart disease and stroke decided to visit me in July 2006.  Stroke made a surprise visit on July 21, 2006 and stayed for a while.  I later learned that heart disease (congenital heart defect to be specific) had actually stopped by on November 20, 1972 the day I was born.  However, it did not decide to make itself heard until stroke showed up.  I guess it was an attention thing…

The funny thing with stroke and heart disease is that they are the kinds of guests that never really leave.  They are always around, lurking in a corner, down a dark alley, and just waiting for the window to be left open just the tiniest amount so that they can come back.  Heart disease is the nation’s number 1 uninvited guest – stroke is number 3. 

You might not know me, but I am quite certain that you have met heart disease and/or stroke before.  They sometimes come without letting you know in advance of their travel plans.  They are not the kinds of friends or guests that you want to have in your home or in your family or friends’ homes.  They do not say please or thank you, and when they leave, it is not quietly and often a path of destruction is a reminder of their visit.

You do not have to think twice about my story or feel pity or remorse– I have started to move beyond these visits, and beyond the fear of a potential “next” visit.  I celebrate my life, with a new husband who recognized my signs of stroke. But think about yourself, your friends, and your family.  Understand the importance of limiting the impact of these unwelcome guests.  Support the American Heart and American Stroke Associations. 


A Pre-Wedding Ode

I learned a lot about the people in my life following my stroke and open heart surgery. You tend to quickly recognize who your true friends are and who are those people who are not so sure if they have the moral fiber to truly be there as you go throw a pretty life-changing experience.  Not to make light of it, but I think that the same is true of weddings.

I have heard  that weddings can bring out the worst in people.  True.  I have witnessed this first hand, but more often than not, it is at other people's wedding.  I am lucky enough to say that for the most part I have not witnessed this behavior, unless you want to include irrational rants and raves from the bride-to-be about scheduling, planning, and those tiny little details that one feels the desire to go over time and time and time again.  So, aside from that I have been - for the most part - lucky.  Lucky to the point that I have realized more and more every day how incredible the people are in my life.  We have an amazing group of friends and family, people with whom we have laughed and cried; people who we have yelled at, and they have yelled right back.  People who are wise enough to tell us when we are being foolish, and people who are innocent enough to think that aside from all of our faults we are super heros.

Between now and the day, we are allowed to behave like fools and feel like we have superhero powers. Because in my heart, we do have those powers.  We can, and will, do anything.

Shadow
 


Dancing, Celebrating, and the Big Day

OK - so it really is not a secret that I am getting married.  And to my closest friends and family it is not a secret that I love to plan.  I have in fact always loved to plan and never been afraid of events or parties.  In fact, when I was quite young, I planned a surprise 20th Wedding Anniversary for my parents.  They, of course, had to pay for the event, but I managed to find the caterer, pick out the perfect guest list and people actually came to the house, my parents where indeed surprised (in a good way) and it worked!

So now I am planning one of the most important events ever, and it is less than 6 months away.  Last fall, when I bought my first 2 Bridal Magazines, I did so with trepidation.  You see, I am rather superstitious.  I have never purchased a bridal magazine before last fall.  I chalked it up to bad luck.  When I placed the magazines down in front of the cashier it was almost as if I was buying pornography or the like.  Don't get me wrong - I have danced my fingers over the pages of such magazines thousands of times before, but never, ever had I actually laid down cold hard cash for the stuff!

So with the magazines - and yes, I only bought 2 because I quickly realized that once you buy 1, there is very little content that differs from one to the next - I started off of my planning adventures.  There is the layout of the event, the colors, and the atmosphere...

Large_image

(image from www.theknot.com)

A decision to find a color that will coordinate with the theme, the room and the invitations that will pull the whole event together...

Katherine
(Design by Katharine MacIntyre Navins, Tallow Studio)

The flowers, the music, and the cake... and then there is the decision of the first dance, if dancing is something that you choose to do...

TangoOutline
(image from http://www.fortnet.org/tfc/Pictures/tangoOutline.gif)

However, it is all too easy to become caught up in the planning and loose track of how and why you started on this journey in the first place.  In the end, the flowers will not last, the rentals are returned to their rightful owner, and the crumbs of the cake are swept up from the ballroom floor.  These items are all secondary to the celebration.  The celebration of being with the most amazing man in the world, the man who came into my life and quite literally saved it.  The man with whom I will spend the rest of my life dancing and celebrating.

Barcelona


Learning to Life - lessons from a stroke

Last week I was asked to give a speech at a Bank of America Event.  After several written versions, I had the final one in hand, and gave the speech on a cool rainy afternoon.  I thought that it would be perfect for a blog post.  So here it is in it entirety (edited by Grammar Glamour)

I tend to be one of those people where more is more – the more that I have going on, the more productive I tend to be.  When there is a lull in any part of my life, all of the pieces including work, social and family are somehow affected.  I find that I bring more to each aspect when they are all in motion.  Over the course of any given day, I rush from one meeting to the next, or often in my case, one job to the next, juggling my coffee, my gym bag, my purse, and somehow making it to my final destination before feeling like I am going to collapse.  I am sure that many of you can relate to this multi-tasking induced exhaustion.

It is a challenge to go through everyday like this, and there are days when the only things that feel balanced are the two bags hanging off my arms as I jet off to work each morning.  Still, I thrive off of the energy and simply readjust the priorities if I ever feel that I’m truly losing my balance.  This wasn’t always the case and I’m thankful I now have this perspective.  Several years ago, dire circumstances forced me to reconsider my own priorities, and think long and hard about what really matters.

On July 21, 2006 – close to three years ago – I was navigating those balanced two bags back and forth between two jobs.  Former colleagues at the Harvard Business School asked me if I could come over and teach a fitness class during lunch.  Fitness was something that I did in a previous life, and I figured that I could make this happen.  I’d teach the noon class, grab a quick bite with my boyfriend after class, and then hurry back to work.  It would be a long lunch break with the fitness class included, but it was summer and a Friday afternoon. 

On our way to lunch following the class, I started to feel ill.  I stumbled, thought that I said a few words about not feeling well, and grabbed some bushes to stop myself from falling.  In a matter of seconds, I went from laughing with Hector, my boyfriend, and Erika, a long time friend of mine, to being unable to communicate at all or think clearly.  Imagine someone turned a switch in your head that stopped you from speaking.  Gone.  Off.  Finished.  That is what happened to me – and that is how I can best describe what my stroke felt like.  As surreal and confusing as it was, I remember everything form that day. 

Hector asked me his name, my name, what day it was.  Nothing came out of my mouth, as I could not respond.  Instead, I just watched him, trying to figure out what to do with the situation.  He drove me to the hospital and after I was admitted, the doctors administered a series of tests.  Almost an hour from the initial onset of the stroke, I received the news… I had a 1.5 centimeter blood clot in my head.  It stopped blood from flowing to areas of my temporal lobe, which is associated with speech.  After four days in the hospital, a cardiologist found an atrial septal defect (or an ASD), which is a hole between the left and right atria in the heart – which had been there since birth.  He concluded that this was most likely the cause of the stroke.  And several hours later I was sent home with another title to add to my list of roles … a stroke patient.  Several months later, I underwent open-heart surgery to close the hole in my heart that caused the stroke.

I scheduled the surgery during a quiet time at work.  I knew that work would be less demanding in December and I would have more time to focus on getting well following the surgery, instead of worrying about what was occurring in the office.  For four months, I busied myself planning every second of each day.  I focused on my work, my doctors’ appointments, my fitness…everything and anything that I could to avoid coming to terms with the sheer reality of the looming open heart surgery that would take me out of the day-to-day routine that I had become so accustomed to.  In my typical more is more method, I became completely and utterly frenzied during those months.

The frenzy suddenly stopped on December 12, 2006 for the surgery – and then switched to neutral for the two months that followed.  I really had no choice but to slow down my pace.  No, nothing was wrong with my heart as far as stress went, but still, I underwent open-heart surgery, and I needed rest.  I am not sure if you have ever had the luxury of taking 2 months away from your life as you know it… but it forced me to refocus and regroup my priorities.  Two months away from work, away from the daily routine of early morning fitness classes, ignoring e-mail messages at 6:30 in the morning, not thinking about what I was going to cook for dinner or who I needed to make plans with felt incredibly liberating.  While these things are important, I came to realize that life went on without immediately attending to these items that had always seemed so pressing.  In fact, life improved by letting some of these things slide.  The emails could wait until later in the day, or even tomorrow.  If I didn’t have time to plan dinner, it was easy enough to get take out or have a bowl of cereal instead of stressing myself out.  Even work went on without my constant attention, proving that while I took pride in my job, I could still do it well without always putting it first. Putting myself and Hector first freed me up to approach everything else with a calmer, happier attitude.  This realization enabled me to better balance my personal and professional life once I was healthy enough to pick up the pace.  While it didn’t happen overnight, it did happen, but unfortunately, it took a stroke and open-heart surgery for me to come to this realization.

Following the stroke and surgery, many of my friends and colleagues remarked on the change in my attitude and demeanor, and the shift in my priorities – people started to describe me as more direct, more calm, and more at ease with life in general.  Since I had experienced first hand that life was short, I learned to drop the baggage that often gets picked up as you go on living day to day.  Time is short, and each minute is important.  I needed to make the most of each one and capitalize on the time that I had.

Having a stroke at any age is devastating.  Having a stroke at 33 with no risk factors – except for that problematic hole – was mind numbing.  In fact, to this day, I am not sure that I have fully accepted what happened, let alone the severity of what could have happened, on that July day in 2006.  That aside, I have gained perspective on life and learned about prioritizing, and setting realistic attainable goals.

You might not have time to do everything, and you might not have time to do everything well.  What is most important is that YOU become a priority in your own life.  Of course, work is a priority and it is something that gives people a sense of self and worth.  Speaking for myself, I love what I do.  Years ago, I promised myself that the second I am no longer satisfied with my work, I will start to explore other options.  While it might seem terribly cliché, life is short and you really do not know what is going to happen or when it might happen to you.  When I was in the hospital following my stroke, and certainly in the months, weeks, and days leading up to my open heart surgery, I found myself questioning some of the decisions that I had made in my life, wondering if they were the right ones. I happily discovered that I did not have any regrets, and I am fortunate enough to have learned to live in the present and appreciate what I have at such a young age.  So much of living is about the balance of work, family and friends.  I think that we all have those days when work takes up more time than we might like, or perhaps family or friends are taking up all of the time, and we know in the back of our minds that we need to get back to work – but it is all about give and take.  You need to be able to find and make time for yourself, so that the other critical elements in your life will fall into place without any one part, especially your health, seriously suffering.

I am obviously going to advocate for a healthy lifestyle – it is something that I led before the stroke and surgery, and something that is even more of a priority in my life now.  I realized that even as healthy as I was, I could not control certain factors of my life – such as a congenital heart defect.  You can take this same story and relate it to work, finances and / or family.  There are just so many things that are beyond your control, and you truly have no way of knowing what is going to happen 10 minutes from now, 10 hours from now, or 10 days from now, let alone 10 years from now.  But you can ensure that whatever does end up happening, you are prepared – both mentally and physically.

What I mean is that it is important for you to have other outlets in your life that allow you to regroup.  For me, exercise and overall fitness was and is my sanity.  It takes me out of the daily grind and forces me to do something for me.  I do not bring a BlackBerry with me, because I am not exercising at 6 am for anyone but myself – I will take my phone when I go running, but only for safety purposes due to my stroke.

It is truly about balance.  I know that I continue to come back to that term – but now, more than ever, as we’re bombarded by emails on our laptops and Blackberrys, and surrounded by bleak news about the current economic situation and global events, it is entirely too easy to become consumed in the day to day and simply forget about yourself.  It is not worth it.  Trust me.  When I was lying on the gurney being wheeled off to my surgery, I was not thinking about the e-mails that I sent the days before, the change in my job description that I worked for several years to achieve, or even the hesitation I felt as I left the office knowing that I would not be back for two months.  No.  I thought about my parents, Hector, my grandmother, my sister, my nephews, and how lucky I was to have them all with me.  I seriously had planned for the worst-case scenario – which was not waking up.  But, no matter what the outcome, somehow I knew that everything would be all right because I took this extra time before my surgery to be with my family.

At the end of the day, it is not about who can respond to an email the fastest or stay at the office the longest.  In fact, I know many people who work long hours, but are far less productive than those who come in, do their work, leave around 6 pm and go home to be with their friends, their family, or simply their yoga instructor.  Let me tell you, the latter group is definitely the happiest and no doubt the healthiest.

Trust your instincts on this.  Trust yourself, put yourself first, and learn to live YOUR life and live it well.  There’s no room for regrets when you only have one chance to get it right.

   

-Lily Underwood Burns, June 30, 2009 Bank of America LEAD Speech


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.