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


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.


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. 


Know the signs-just in case part 2

I lay on the gurney alone thinking about whether I had done the right thing - by coming there.  The ct-scan was fine, but the doctors wanted to perform additional tests.  I turned my head around and looked at the monitor, which keep beeping from time to time.  My pulse was around 47 and my blood pressure was 96/57.  Low, but normal for me.  I figured that was good, because if something was truly wrong the numbers would be significantly higher.  I flipped through my iPhone playing one game of sudoku after the next waiting for something to happen until finally the doctor - the short one - came into the room.

Doctor: You wanted to see me?

Me: Yes, I wanted to know when I can go home.

Doctor: Well, we still need to run a few tests, so you are going to stay the night.

Me: Well, I do not really want to stay the night.  Plus, I have my groceries in my car.

Doctor: Well, it would actually be considered a danger if you went home since we still do not know what happened to you. 

Me: Well, can't I just come back tomorrow?  I would really like to go home.

Doctor: I really think that you need to stop worrying about your groceries and focus on your health.

OK, now if she had offered to go and get my groceries that I had purchased at Whole Foods earlier that day and that were presently sitting in my car in the late July sweltering heat, that would have been one thing, but that was not an option.  So I really did not have too many choices in front of me.

Me: Um, ok, so what is the room situation?

Doctor: Well, that is what we are waiting for, ok? (and then she showed me a big smile as if she knew something that I did not know). Oh, and we are going to give you some ativan once you get to your room.

Clearly, they did not want me to talk any more and were convinced the medicine would take care of that. I really have nothing to do but wait, and shortly there after the nurse came in to tell me that my room was ready.  He announced it almost as if I was in a hotel, which of course I was clearly not!

On my way up to my room I texted Kerry, on of our best friends, and she offered to come by and visit and bring a phone charger and a sweatshirt to wear.

I got to the room, and navigated my way off the gurney with my IV in my right arm, and my computer bag over my left shoulder.  I carefully walked into the room and past an elderly woman who looked me over as I walked towards my bed, which was located by the window.  The woman looked at me as if I was intruding and I did not belong.  I felt like telling her I could not have not agreed more, but instead offered her a slight smile and walked to my bed.

An orderly started to take my vitals - and this included my weight.  Seriously?  It was about 8:30pm, I was having a really shitty night, and she seriously wanted my weight?  Unfortunately for me there was no getting out of this one as the bed actually contained a scale.  Like or not this WAS going to happen.  After those unpleasantries, I asked her for some scrub bottoms to put on, and then went to change (I was still in my work pants).  And that was it. When I emerged from the bathroom I just stood there and looked around.  I was alone and in the hospital for no apparent reason.  The bed was as flat as a board - there was only 1 pillow and one of those moisture resistant pads on the bed for unmentionable problems.  The bed was too close to the woman's part of the room - even though the curtain was closed.  I started to move the bed - one inch at a time pushing all of my weight into my legs. There I was - in my hospital fashion wear, with an IV drip, moving around the room.  Lovely.  However, I needed to do something to keep me busy while I just waited, and waited.  I put the bed into a place that gave me some sense of satisfaction.  Then I did some more waited, and while I did I lost it.  The tears started to roll down my cheeks, and I seriously contemplated leaving.  I took the moisture pad that lay on the bed and through it across the room since it represented everything to me that I was not - sick, unhealthy, and not well.  My IV line kept getting tangled and due to its position, I could not comfortably bend my arm.  I called the nurses and asked for my IV to be moved to my hand.  More waiting.

As I lay there with mascara unevenly streaked around my eyes, Kerry walked in, and for the first time in several hours I felt a sense of relief.  Not only did only she bring a charger for my phone and a sweatshirt, but she also had a box of Belgian chocolates, which inevitably put a smile on my face.  She helped find out where my medicine was (by this point I decided I wanted to go ahead and get the ativan right away).  After another call for the IV change and an inquiry for my medicine, the IV nurse came in to relieve the pain in my mid-arm only to instill some pain into my hand.  A mere several minutes later, the nurse came in with my medicine and I quickly took it all anticipating the ativan to take effect.  Kerry sat back and watched, waited, and after about an hour of keeping me company saw that the ativan was taking effect.  She graciously left me to drift into some kind of sleep.

Voice: Lily, Lily, wake up.

Me: Wha...? Is it time for my MRI?

Voice: No, it's me, wake up.

I opened my eyes and Jarrett's face was right in front of mine.  Jarrett - one of our best friends had managed to talk his way past hospital security after midnight and woke me up from my ativan-induced sleep.  At that moment it hit me that Hector and I are two of the luckiest people ever. Between Kerry and Jarrett (and so many other people) we have incredible friends, and having good friends makes all the difference.  For about 40 minutes Jarrett paced the room, ensured that my car would not be towed from emergency parking, suggested that the overhang outside the window be used for overflow beds, and reassured Hector via multiple text messages (since he was away in D.C. for a conference) that I was fine.  Jarrett also witnesssed the moment that the nurse gave me an additional dose of ativan via IV.  Now this was new to me - something I had never had before.  Apparently the doctor had decided this would be a good idea prior to the MRI, which was finally ready around 1:00am. 

As I got up to walk to the MRI, I kept my computer bag by my side.  The ativan had a mind-numbing affect, and little bothered me at this point.  Jarrett followed behind, in line with the gurney, until I got to the MRI.  We said our goodbyes and then the testing began.  The knocking from the magnets were louder than normal, but this was not like the 10 or so other MRIs that I have had.  The ativan started to take its full affect, and as they explained the MRI to me, and I nodded in agreement informing them I had undergone almost a dozen of these tests, my legs started to bother me.  Restless leg syndrome is the only side affect I have following my stroke, but it came on in such full force while I lay there during the test that I could not stay still.  I kept shaking my legs - one after the next in an attempt to dull the aching and restlessness  that took over.  Through the intercom the doctors repeated several times to stop moving.  Impossible.  I could not stop my legs.  I started to hallucinate.  Orange fuzzy-like things were all over my legs and I kept trying to shake them off, on after the next.  I could not even remember where I was and I felt as if I was drifting in and out of consciousness.  Shaking, one leg at a time.  The orange fuzzies would shake off and then jump right back on.

Me: I need more ativan.

Them: You need to stop moving.

Me: I can't.  My legs.  I can't stop them.

Them: You need to stop for 10-20 more minutes.  We are not done.

Me: I can't...

Tears, again, started coming down my face.  I wanted it over.  I wanted to go back to my room.  And before I could go through another series of shaking my legs, it all stopped.  The banging was over, I came out of the machine, and the test was done.  My computer bag was handed back to me, and we started to go back to my room.  I have no recollection of getting into bed that night.

I woke up around 6:30 am (4 1/2 hours of sleep) to another set of vitals and the hustle of hospitals.  I called Hector in tears (I have a lot of them, so no chance of ever running out!) just wanted to leave.  I wanted to go home.  I could not believe that less than 2 months into my new job I was out of work for something so stupid.  As always, he took the time to talk me down from my hysteria, and bring reason into my head.  Several minutes later a nurse came in to tell me it was time for my ECHO.  Great, another test, and this time on my heart.  I contemplated asking for ativan...

The ultrasound wand ran around the outside of my chest and there it was in black and white on the screen - my heart.  The one organ/muscle that caused all my problem in the first place, but the one I would never ever want to do without.  I watched it quiver as it brought blood in and send blood out.  Flaps and valves moved, and I waited in antipation for the "Bubble Test".  This test would confirm whether the hole, that was sewn shut on December 12, 2006, was still closed.  The doctor agitated the saline and injected it into my IV line.  Instantly, the bubble reached one chamber of my heart.  We all watched and held our breathe.  Nothing.  Nothing happened.  No bubbles escaped and went to the other chamber.  It was good, closed, the thread that tied it together (so to speak) had not come unravelled.

And that was that.  Back in my room my mother waited for me with one of those smiles only your mother can give that makes everything seems alright.  Unfortunately, some young neurologists also waited.  I dreaded having to answer more questions, and I glanced at my mother who sat in the chair reading a book.

Doctor: Do you mind telling us what happened?

Me: Actually, I do.  I am tired of telling my story, and I really do not want to go in to it any more.  It should all be written down in the chart.

Doctor: (looking rather taken a back) I understand, but it would be good to hear you go over it.

Me: I really do not want to.  I am fine now.  I want to go home.

Doctor: Well, it seems that you had rather large migraine, and that could be what led to all of this....

I tuned him out.  I was not going to go over my story again.  I knew that it was a teaching hospital, and I was not helping the cause, but I was exhausted, annoyed, and hungry.  I wanted a coffee (which my mother managed to get for me) and I wanted my own bed.  A migraine.  I came all the way in here for a migraine?  That was it?  I was done.  The fear still danced in the back of my mind.  What if...what if it was more than that?  Well, then it was, and it was over now.

The doctors released me shortly before noon, and I walked out of the hospital in a sweatshirt, scrubs, dress shoes, and carried my computer bag over my shoulder.  I looked anything but fabulous.  But I was ok.  Deep breathes, and I drove myself home.

I supposed if it happened again, I would have to do the same thing.  There is no way of knowing whether the outcome would have been different.

Thank you to Hector, Kerry, Jarrett, my mom, Steevy, & John.


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.
DSC_0490

Broken

My body feels broken.  Not in a spiritual or symbolic way, but in the literal sense.  It hurts to walk, sleep does not come easily, food does not have the same taste that it once did, and simple movements that I could do without thinking twice make me wince.  Lying on the concrete floor in my apartment on a yoga mat with my feet propped up on the ottoman brings instant relief to everything that feels broken (mostly my back), that is until I have to roll onto one side to get up from that position because my body starts to feel as stiff as the poured cement below.  Yes: broken, casse, fragmented little pieces.


My father wondered whether I was getting too old to be teaching fitness classes... "You are 35 after all..." Thanks a lot dad.  Actually, I am 36, but who's counting?  And too old?  Are you kidding me?  I mean I think that Jack Lalane is still going strong (juicer and all!) and I KNOW that Richard Simmons is going strong.  I mean if he can do it, then I most certainly can as well!  So even though there has been one back surgery, three knee operations, and open heart surgery, I will still keep at it... broken or not.  Perhaps it is vanity, or those endorphins that bring on a high greater than any drug could, but I cannot stop moving, teaching, or being myself.  Even if it means lying on a concrete floor from time to time...  Thank god I brought a towel to work so that I can lie down on my office floor if needed.  No ottoman, but I can always prop my feet up on that Herman Miller Chair!


Aeron_3(image from Herman Miller Seating)