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.


Breaking Hearts

It has been sometime since I put fingers to keys and wrote on my "Queen of Hearts" blog. There is really not any good reason. Perhaps it is because lately I have felt "fixed". The 5th anniversary of my stroke crept up on me, and it was not until someone else mentioned it on Twitter that I remembered the day. A little voice in the back of my head kept telling me there was something of critical importance on 21 July, but I kept silencing that voice.

We have also moved, a big move: Boston to Abu Dhabi.  I had the comfort and knowledge that my medical care was sound and secure when we were in Boston. I lived in the middle of some of the world's best hospitals. And now, I am at a total loss when it comes to doctors. What hospital do I go to? What if something else happens to my heart? Will they even understand what kind of heart surgery I had following my stroke? I also pushed those fears to the back of my mind and told myself that nothing would go wrong - we would just make the move and deal with the challenges as they came our way.

I am now in a place where no one knows my story. Unfortunately, my story is not unique, and there are stories out there all over the world that are all to similar to my own. I recently heard of a heart breaking one... Jennifer Perillo's husband died of a sudden heart attack several days ago. Like my stroke, it was a sudden event, no warning. No one should have to experience that kind of loss.

I have never met Jennie, I have never met her family, but she and I have exchanged brief messages over Twitter. Her news shocked and shook me. It stunned me. And haunts me. And perhaps that is why I am typing again on the Queen of Hearts, because of the hearts that break every day and there is so little that can be done.

My husband and I learned something so valuable after that day in July and again after my open heart surgery several months later... Life happens and sometimes, when it does grief comes along. It is unpleasant, it is unfair, and often there is little if any any justification for what comes our way.

Remember to hold your loved ones tight. Tell them how you feel. Appreciate the here and now, and try to let the worries of tomorrow become a little less, as here and now is all we really have. And love as deeply as you can. 

Bw desert us


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...


Just Being

I have been told to be still - been told to just be.  Much easier said than done.

I am tired of sitting around... it actually is painful to sit around all day.  Seriously, it hurts to sit.  My physical therapist told me that I need to rest, to take things easy at this point.  It is incredibly challenging to do this, especially when most of me feels perfectly fine.  Yet I find myself sitting in bed, or sitting on the couch, or sitting in our oversized chair day in and day out.  The pain is not just from sitting, but from holding the crutches.  It is awesome - really and truly... (no, not so much...) Even when I want to move, and I go to the gym to move my upper body, I am still sitting so little relief is found.

And then there are the snow storms.  I was thinking about going shopping to pick up some groceries before the next storm, but then realized I could not carry them home to bring them up to my apartment, so that was out.  So instead I went on line to order groceries.

But I now find myself inside unable to go out due to the snow, and I sit at the window like a cat and watch, and listen to the wind blowing at 30+ miles an hour.  It is not easy to be still, not easy to just be.  No, even after a month, it is not getting any easier.  Seriously, how do people sit around all day and do nothing?  I mean it is exhausting!  I am simply exhausted from doing nothing.  I just do not understand.

  DSC_0267


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.


Well, Then, where do I begin?

I started this blog years ago, after a stroke.  Yes, I know.  You might be tired of that word.  I myself have started to grow tired of it, and I suppose 4 years later that is a good thing.  I actually never thought that I would shy away from the word.  For so long after the stroke, it became my central identifier.  And yet now it is merely a small part of who I am and it by no means defines me.

Since 2006, I have taken an active stance in speaking out about stroke and heart disease awareness.  In the beginning, I did it for myself.  Then, as time went on, I did it for people I knew who had suffered a stroke.  Some went on with their lives, and some people's lives were taken by stroke and heart disease. Now I am truly passionate about raising awareness, and it has become noticed.  Recently, I was contacted by Harvard Pilgrim Healthcare to participate in a program they started call "Well, Then."  This is a community of individuals who share ideas about being and living well.  Topics range from healthy eating to living with diabetes to (yes, you guessed it!) living with heart disease.

When Harvard Pilgrim approached me, I was intrigued.  They asked me to write a series of pieces and post some videos over a two month period and explained that I would be compensated for my work. Another venue to raise my voice, to share my story, and to quite possibly make a difference.  I thought about it.  I thought about it a while. I knew that I had a lot going on and with the upcoming holidays, some travel plans, and a pending knee operation, I wondered whether I could commit to the task. However, I kept thinking back to my own experiences with stroke and heart disease.  I did not know all of the warning signs of stroke and heart disease prior to my own experiences.  I did not know that heart disease was the nation's number one killer and stroke number three.

If I did know the signs and the symptoms, would it have been any different? Maybe, maybe not.  But if I am able to reach just one more person and make a difference, then in the end it is all worth it after all.

 


In the Moment

Sunset

Very soon, there will not be enough space on forms for me to fill out the number of surgeries that I have had.  I am not yet 40.

I am not complaining, these kinds of things happen, and for the most part there is little that I could have done in my past to have prevented any of these surgeries.  

My tonsils?  Well, they just got too big and by the age of 6 the doctor wanted them out.

At 19 a disc in my back degenerated so badly that my right leg was starting to go numb and give out.  I am not sure that I could have changed that.

Three knee surgeries happened due to a stupid skiing accident on a day when I did not even want to go skiing.  I suppose I could have changed this - I could have not gone skiing that day.  I could have taken a different trail down the mountain (I'm sorry, HILL, as we were skiing in Massachusetts...), and there are dozens of other little decisions that could have been made to stop the incident from occurring, but none the less, it happened.  And life goes on.

A hole in my heart... born with it.  Congenital heart defects happen, and I do not know of any ways to stop them.  Many people have asked me, "Well, how did you find out about it?"  A simple one word response:  "I had a stroke."  And I could not have stopped the stroke, because it had to do with the heart defect.

And now I am pretty fired up, because I get to have another knee surgery.

You almost have to laugh at all of this.  Almost.  Because if you didn't you would sit down in a corner and cry because the entire situation is pretty pathetic.  However, I am not the kind of person to sit in the corner and cry.  I am not the kind of person to sit in the corner and complain.  I would rather be in the middle of it all, changing things for the better, and making a conscious decision to live my life in the moment, and know that for that moment, it is going to be alright. 

 


Frequent Patient Card

I should be used to it by now... the waiting, the anticipation, the news, the no news, the anxiety, and perhaps most prominent of all, the frustration.  Yes, after all of my numerous visits, countless tests, blood draws, scans, xrays, MRIs, I still hold out hope that the next time it will be different.  But more often than not, I am disappointed.

I am a repeat customer at my hospital.  If any one of my doctors spent time reading over my chart, they would see that I am an excellent client - good for them, bad for me.  Three knee surgeries, stroke, open-heart surgery, pneumonia, all within in the past 6 years.  Pretty good stuff, right, and for someone who has not even reached the age of 40.  And lucky me, I managed to do something to my knee again, two days ago.

Not just a little something, but something so painful that I am unable to put weight down on my leg. So painful that it keeps me up at night, and so painful that just looking at stairs causes panic.  You might say, well I am a klutz or I need to take better care of myself.  That is the irony of it all - low blood pressure, no smoking, and a fitness instructor, so stuff like this should just not happen.

But let's get back to the doctors, and my frequent "shopping" card at my hospital.  It takes very little for a doctor to look at my chart and see that when I am calling and asking a question, I am not trying to be difficult, but simply looking for a response.  I do not think that it is too much to ask that I receive a response in 24 hours.  So when I called my orthopedic doctor a while back and left a message that I was in a considerable amount of pain and it would be helpful to have the results, I was less than thrilled when I had not heard anything by the next day.  I called back almost 48 hours later and was told that in order to find out my MRI results I would have to speak to radiology, and my orthopedic doctor would be given another message but that he was really busy (yes, I am aware of this, the first time I met with him I waited in the office for 2 1/2 hours...)  Radiology told me they would not give me the results as my doctor needed to give them to me, and so I was being bounced around like a ping-pong ball.  Oh, as far as my pain goes, they told me to increase the Advil and I could come in for a cortisone shot.  Um, no thanks.  I have had one of those (2 in fact) and they don't work.  Neither, for that matter, does the Advil... And I informed them that I really looked forward to coming in and waiting to be seen.  It just rocks.

I suddenly was reminded of 2006 and the preparation for my heart surgery.  I was not given direct answers, and often the answer that most people agreed upon was a run around response.  So, I consider myself an "expert" in the medical system, and I am continually disappointed.  There should be some kind of points card for frequent visitors (patients) at hospitals.  You know, those of us who unfortunately are more familiar with some aspects of the medical care system than our own doctors are.

I know that my circumstances are by no means unique.  Sadly, my situation (the lack of response, apathy, and wait time) probably happens to most people.  Why is it that when a doctor treats patient with respect that it is cause for celebration?  Or when a patient is seen within 5-10 minutes of the scheduled appointment it is considered "on time"?  Yes, there are many other variables at play here, and I am well aware of these (patients can be late too etc), but as a frequent patient I think that expectations and outcomes should be higher.