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.


Know the Signs - just in case part #1

July 30, 2009

4:00pm - I sat at my desk and with in minutes started to feel weird - this was not like the first time.  My left arm started to go numb and feel weak, I felt nauseous and a gradual headache made reading and focusing on my work almost impossible.  I ignored it at first.  I get headaches - they happen.  I work out all the time, so I am used to aches and pains, but this felt different.  So different in fact that I thought of my neurologist and called my neurologist's office a few minutes before 5:00pm to make my annual check up.  5:15pm I took 2 baby aspirin, again just in case.  My arm got weaker and pain started to radiated in the upper part of my arm.  I pulled out some post-it notes from desk and wrote "I might be having a stroke, only take me to the Beth Israel". I slipped the note back in my desk drawer so that I would not raise alarm for anyone, but that it would be accessible just in case I needed it.  After speaking to Hector, and telling him how I was feeling, he urged me to call my doctor.  5:50pm, I called my doctor's office, and the nurse  - after reading over my medical history - suggested that I go to the emergency room just to be safe - she said that she would call ahead and tell them about my situation.  She asked me several times if I was able to get to the hospital safely, I felt that I was, so off I went.

Driving though Boston can be a challenge at any time of day.  Driving through Boston an hour before a Boston Red Sox game is misery.  I navigated along the Charles River, past Boston University, around one side of Fenway Park and finally got myself to the Longwood Medical area.  Tears started running down my face as I remembered the last time I went this route was when I actually experienced a stroke and rode in an ambulance.  This time was different - I was by myself, and no one really knew where I was going.  I maneuvered through traffic and finally got myself to the emergency room parking lot.  

As I starting to walk in, two women were in front of me on their way into the ER, one of which was in a wheel chair.  I needed to get in front of them, so I started quickening my pace.  Now perhaps this was not very nice of me considering they were significantly older, but at this point I did not care.  I was alone, scared, and needed someone to give me some kind of reassurance.  This was not going to be a moment for pleasantries or manners, and I did not want to wait in line.  When I got into the building their was a triage receptionist taking "orders" and a really tanned couple was giving their problem in extensive detail.  Although there were three other windows for people to go to, there were no nurses behind the windows waiting there.  To my left a receptionist sat reviewing various bits of paper and looking at her nails.  That was my ticket - I was not going to wait in line - regardless of the octogenarian duo in front of me.

I walked to the receptionist on my left and explained my situation all the while trying to keep it together.  She gave me a blank stare not really getting it. I told her again that my doctor's office had recently called over and that three yrs ago I had a stroke.  Several hours ago I started feeling odd, seemingly having stroke-like symptoms.  I wanted to see someone straight away.  She pointed me towards a chair to sit down, and a triage nurse came over to take over to ask me some questions and take my vitals... Blood Pressure:  110/70, pulse: 56. Time: 6:30pm.  Another nurse came over and asked me to follow her back to the ER, she led me into ER room #17 and asked me to undress from the top down -with that she left the room.

I changed into the johhny and pulled my iPod and computer onto the gurney and started to get ready to do some work while I waited, because I knew that there would be a great deal of waiting ahead.  And so it began - the tests.  I knew what to expect, I am all too familiar with neurological testing, and in fact when I was back in my office a few hours earlier, I did some tests on myself - I stood in front of the mirror in the bathroom and smiled to see if the smile was even.  It was.  But the doctors asked me to smile again, and touch my nose, raise my arms up, squeeze their fingers.  The tests went on... and on. There were two neurologists there - both women, one tall one short - and they both wanted to ask their own questions and conduct their own series of test.  While one of the nurses impressed upon them that it was time for my MRI, the shorter of the two neurologists quipped "Well, we better follow you" and they quickened their pace to follow the gurney down the hall - the little one practically ran she was so excited (if I could have read minds, I would bet that she wanted to find something on the ct-scan...).

The scan came back normal much to my relief - they did several scans in fact, with and without contrast.  I was brought back to my "room" and left to wait.  At this point it was around 7:00pm, which mean shift change for the nurses.  The new nurse, a young man, came into the room and took my vitals and again I was asked what happened.  I suppose that reading a chart is out of the question, and each person needs to hear the story on their own.  By this point I was tired, and I felt alone, and I was sure that my story was not sounding exactly the same from one version to the next.

After making several phone calls to tell key people (boyfriend and mother...) where I was, I pressed the call button and the nurse came in.

Me: Um, what is the situation? (I lay there with one legged draped over the metal bars on the side of the gurney)

Nurse: Well, I looked at the computer, and they want you to stay the night.

Me: Well, I do not want to stay the night.

Nurse: Well, we can't make you, it is your body, and you are of sound mind, but that is what the doctors are ordering.

Me: Well, I have my groceries in my car.  Is there a place I can put them?

Nurse: ????

Me: Well, can I go out there and get them?  I am hungry.

Nurse: I do not think that you can eat. 

Me: Well, can you get the doctors?  I really do not want to stay.  This is not in my plan.

Nurse: OK.

(stay tuned for part 2...)


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.
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Nuclear what???

Tests, medical ones.  All kinds.  I have had them  You want to know about them, well, in my 36 years, I have become quite the resource:  ACL surgery, laminctomy (back surgery on L5-S1), stroke, open-heart surgery, TEE test, multiple CT-Scans, MRIs, endoscopy (2 times, and the drugs given for this, well let's just say that they make it all better), and that is just a few of things.  You would think that I am about 30 years older than I really am.  Nope.  You would think that I am unhealthy.  Nope - I exercise, eat an extremely healthy, clean, additive-free diet.  But none-the-less, I have had these test for real problems, and the last was a gastric-emptying study. 

In my experience, when doctors explain tests, they do so in a very "laissez faire" kind of way.  For me, I tend to look up as much info as possible, and sometimes that is not a good thing.  So when one of my doctors mentioned a gastric emptying study, and I started the searching on line, I was not thrilled (to say the least) to see the words NUCLEAR MEDICINE.  I am not a doctor (although in another lifetime, I would probably like to be one), but the thought of something nuclear going into me just did not seem right.  Upon further research (on line mind you, important to know this) I starting reading about "fried egg nuclear sandwiches".  Not exactly what I imagined, especially considering that I do not order fried egg sandwiches on a regular day.  So, a few days before the test I called the office and asked many questions.  The tech, very nice, gave me some info that I would not have otherwise had.

1. Bring an IPOD.  I would be lying still for 45 minutes for the first series of images.  This came in very handy...

2. The test could last up to 4 hours.

3. The substance (Tc-99m) is in an egg substitute mixture, and this is eaten along with toast.

Well, I figured that the hospital was going to have some kind of processed white bread, so I brought my own toast.  The tech looked at me like I was a bit odd, and I told him he could discuss it is with all of his friends, I did not care, but I was not going to eat processed white bread - the nuclear eggs were bad enough.  He complied, and went off to make my sandwich.  When he came back, the eggs were in a little paper bowl, and my toast was burnt.  Not the fanciest breakfast, but I was hungry, and I ate it even though the eggs left a metallic-like taste in my mouth.

The first set of images were fine.  The table was fine.  The test is really quite simple, and since I had to be there for the entire 4 hrs, I finally asked if I could just sleep on the table in between the pictures (each break was for an hour).  No one had a problem with it, so I got to rest, and they received their images. 

Seriously, I mean let's hope that something comes out of this test.  It is comical that I had nuclear eggs for breakfast.  However, it is certainly not something that you will see posted on the Queen of Tarts!