Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Side Effects”

Sleep Deprivation


Sleep is overrated.

As far as I can remember, I have always been always been a light sleeper, but never suffered from an inability to sleep.  That is until my heart surgery.  I always sleep on my sides, however, when I had the surgery, because my breast bone had been cut open, I was forced to lay on my back, which was a struggle enough to get into bed.  I could never have been more uncomfortable, and with Wendy’s help, and several pillows and positions, I finally found comfort.

But the day came that I was able to roll over onto my side.  Unsure and nervous how my rib cage would take this effort, I rolled over onto my right side first.  It went without incident.  But when I rolled over onto my left side, my heart nearly jumped out of my chest, or at least that was what it felt like.  Even though prior to checking out of the hospital, I was told that I was so much better cardiac-wise than before, I would have sworn I was having a heart attack anytime that I rolled onto my left side.  Thus I went from being a light sleeper, to a no-sleeper.  I would never get into a deep enough sleep, called REM sleep I believe.

Until recently.  Several things in my life have been occurring, simultaneously or pyramiding, but it is alot.  The strange thing is that I do not really acknowledge them necessarily as stressful.  At least not consciously.  But I do know that my sleeping has been dramatically effected to the point where I average two to three hours a night, and on at least three occasions in the last month, including this past weekend, I had zero sleep.

Here is what a normal and healthy person can expect without a decent amount of sleep.  Memory and cognitive functioning can be affected.  Logic can be thrown out the window.  Stress and irritability increase.  Lack of sleep can affect our job performance as well as safety.  One other activity that comes to mind when the mind is abused like this, consuming alchohol.  Do not even get me started on fatigue.  The body needs rest to recover from the day’s activities.

And what do you suppose will happen to a body that has been extremely compromised from cancer treatments and surgeries that have changed the physiology of the body?  But before I get to that point, I need to find out what happens when the brain just will not shut down?

It is pure coincidence I am certain, that the escalated insomnia occurred when I stopped drinking the large amount of Coca-Cola (up to three liters a day).  I keep a very busy and tight schedule, often missing meals.  I had no issue with this because I traded calories for soda.  I want to believe that perhaps my body reacted to the lack of sugar and caffeine by shifting into its own natural adrenaline gear.  The only problem with it, unlike the “down” that goes with the “up” of soda, I do not seem to have a “down” for this.

To complicate this matter even further, one of my late effect issues, which I believe has still not been narrowed down exactly, though procedures have definitely defined symptoms, involves a nightly battle with reflux.  It is frustrating to me, because I have made all of the changes that the doctors thought would resolve this issue (which is actually complicated with a difficulty of swallowing issue).  The head of my bed has been raised.  I have doubled the amount of PPI (a prescription to reduce acid production).  I have eliminated most foods that contain or produce acid, especially carbonated beverages.  And I certainly do not eat anything after seven o’clock in general (unless I have gotten home late from some event).

One thing that I have learned I can count on, it is in the early morning hours, I will begin to cough.  And that coughing will result in some production of reflux.  If I am lucky, I can go back to sleep.  If I am not, on at least two out of three occasions, I have landed in the emergency room diagnosed with pneumonia (one accompanied with sepsis, the other double pneumonia).  The causes of the pneumonias went undiagnosed, but one test that had been done on me, found an issue in my esophagus, called a diverticulum.  It was explained to me, that this fault had the potential to trap bacteria in my esophagus, which could then lead to what is called aspiration pneumonia.

Of course, I understand without looking in a dictionary, the word aspiration to be related to choking or loss of air, unable to breathe.  And that is what the two ER visits began with.  So, nearly every night, I wonder, is this going to be the night that finally gets me.  Am I paranoid or afraid to go to sleep?  Am I just too keyed up to turn my mind off?  With everything on my plate, whether willing to admit it or not, is my body under too much stress.

One thing I do know, I need to get a grip on this.  The most notable victim/patient of insomnia was Michael Jackson.

Being In Charge Of Your Care


We trust our doctors to make the right decisions.  In the old days, doctors were able to take their time and offer empathy which is critical to a patient.  A lot more time could be spent with a patient because the patient relies on the doctor, trusts the doctor to hear, listen, and treat.    But over the years something has changed.  Insurance companies.  Attorneys.  Pharmaceutical reps.  A doctor’s days appear to be split between patient and business.  I am sure there is much more that goes on behind the scenes that I do  not know.

Which leaves us with no choice, we have to speak up for ourselves.  The problem is that most of us do not know how to do that.  We do not even know the first step.  The two main players on your treatment team – you and your doctor.  Without having a doctor’s degree, we need to have things explained to us on a level that we understand.  We need to know what is about to be done to us.  Why are we being asked to take prescription drugs and what are the side effects going to be?  What was going to be the prognosis?

An oncologist with a personality less charming than a Fleet enema kit, in spite of his skills and ability, will not be my doctor if he cannot handle my emotional needs or is not willing to talk to me about the things that he is planning on doing to me.  I fired, yes fired, three cardiologists following my open heart surgery because once it had been determined by my lead doctors at Memorial Sloan Kettering that the heart surgery was made necessary due to past cancer treatments, and those terminated cardiologists refused to acknowledge that fact which would be critical in follow up exams and studies.

I would never look back or second guess myself.  If I could not understand what the doctor was trying to tell me, then the good doctor was going to take the time to explain it to me. 

My father was faced with that same position.  Being diagnosed with cancer is one of the scariest things we can be told.  It comes even more as a shock, when we do not expect to be told we have cancer.  But as I tried to explain to my father, just as had been explained to me decades ago, these  types of doctors deal with a lot of death.  They are very confident in what they do, but they cannot afford to be emotionally attached to each and every one of their patients.  Do doctors like that exist?  I am sure that they do.

But I told my dad, that since he had time on his side, reach out for a second opinion.  I also told my dad, not to be surprised if he ended up with someone else, from the same practice, which is what happened for him.  And this doctor met my dad’s emotional needs.  That gave my father the opportunity to pursue his options with clear thought, instead of being consumed with the thoughts of his dislike for a doctor’s bedside manner.

If you do not have time to get a second opinion, your doctor will and should tell you.  But if you do have that option at your availability, then by all means, when you are having something major done to your body, get that second opinion.  And if it ends up different than the first opinion, get a third opinion.  But it has to be our mouths, our minds, our decisions.

Friday, April 18, 2008 – A New Beginning


*** note – this is the final installment of retelling the events around the 5th anniversary of my life-saving double bypass heart surgyer.

The last thing I remember, is the chatter of the operating room, “he’s so young for this.”

Coming out of anesthesia was a controlled effort by the part of the doctors.  I had no idea what to expect.  But before I forget, if you read yesterday’s post, as you can see, it is the most powerful thing that I have ever experienced and to actually read that my heart was stopped, and emptied of blood, is just chilling.  Though my body was on a machine, used to pump the blood throughout my body, I guess technically, I was “dead” at that time.  But for those who are curious, no, I did not have any out of body experience.  But reading the surgical report, I could imagine what it was like in that operating room.

As my eyes open in the intenstive care unit, I saw Wendy sitting in the corner of the dimly lit room.  There were no windows so I had no concept of date or time.  She called for my nurse, a young man named Joe who came in, prepared to deal with any pain or panic situation I may experience as I come to grips with what has happened to my body.  Most importantly, I AM ALIVE!!!  I MADE IT!!!

I get picked on quite a bit for the rank I place myself as far as care and concern.  Evidently, with an 8 inch incision on my chest, tubes coming out from everywhere of my body, machines beeping and blinking, I suddenly realized something.  I was supposed to DJ a wedding reception tomorrow morning.  Yes, I actually did that.  Besides being a totally inappropriate time to be worried about something like that, I had no way to communicate it.  I was intubated with an air tube helping me to breath for the time being, and my arms were too weak to move.  Wendy came over, grabbed my hand in care and comfort, and I pulled it away to get her attention, and then pointed my finger.  Not really sure what I was doing, she finally gathered that I was trying to spell out something.

“I was supposed to do a wedding.  Call the bride.  Number is ###-###-####.  Tell her I’m sorry.  Call this guy instead.  He may be able to help them out.”  The look on Wendy’s face was shock.  I’m laying in the ICU just recently out of open heart surgery, and this is the first thing that comes to mind.  Later that evening, Wendy made that call.  And I so appreciated the understanding couple who expressed concern for me.

Pain and discomfort were an initial issue and another dose of Fentanyl was adminstered, and back out I went.  But later, and like I said, with no concept of time or day, I awoke to Joe back in my room, Wendy had left.  He was just going over my vitals and checking out all of the equipment.  He asked if I was comfortable, and for just having had my breast bone cracked open just hours ago and connected to all kinds of machines and hoses, I was quite surprised how comfortable I was.

Just then a familiar face came into the room.  It was Heather, my nurse from the day before.  She came to visit me, while during her shift break,  after hearing that I had to have this procedure done.  Before yesterday, she was a complete stranger to me, and today, she had as much compassion and empathy as someone who had known me my whole life.

There is a saying about being in the wrong place at the wrong time, and at that exact moment, Joe came back in, wanting to get me cleaned up from earlier in the day.  So Joe ended up recruiting Heather.  I was in no condition to protest.  And not that there is anything wrong with, was a little more comfortable having someone as easy on the eyes as Heather to take care of me (though for a dude, Joe had some good looks as well).

Joe had informed me of upcoming plans to get me out of the bed in the next few hours.  He went through a long list of things that I had to prepare for when this time came, such as carrying around all the extra tubing, IV lines, wires, etc..  The purpose was to just get me out of the bed and sitting.  I thought, “HOLY SHIT!!!  I just had my heart operated on a few hours ago and they are not even going to let me rest!”

If you are wondering what it feels like to have this type of operation, let me remind you.  Just days before, I had been spending over an hour on the eliptical machine (a stepper/walking machine) followed by another 45 minutes weightlifting in the gym.  This had gone on for months.  Obviously I was in shape, no?

Just sitting up, was exhausting for me.  How could this be?  I did not have anything else done with my body, my legs, my arms.  Okay, so my chest was opened, but how could I be so weak?

Like I said, I had no concept of time, but the time did come, I believe the next day, that I was moved to a private from the intensive care unit.  But here was the catch.  I was told that I would do it under my own power.  I do no think that the nurses expected me to do what I did, but I was determined.  Just the day following my open heart surgery, I walked what amounted to the length of a football field between two floors, with a wheelchair behind me to allow me the opportunity to rest, which I did not take.  It was a walk that I could make just days before, with ease.

I made it to my new room.  And I was exhausted.  Over the next couple of days, I was encouraged to walk.  But on the day after my arrival to my private room, I was found walking the stairways.  You would have thought that the staff would be happy to see my progress.  Not exactly.  But the bar had been set.  Physically I was well on my way to recovery.

But on my second to last day in the hospital, I found out that I was a long way from recovering emotionally.  It was early in the morning, and a group of people had come into my room:  caseworker, finance, physical therapy, occupation therapy, and clergy.

Up until this point in my life, I had done a very good job of controlling my emotions.  But after just a few words by the clergy, I lost it.  I fell apart.  I could not handle all of the care I was receiving.  It was not about believing in a higher power, which I do, but rather dealing with the fact, that I had now survived my second life and death experience.

I was reminded just one day at home from the hospital.  Wendy had stayed with me for the first week at home while I recovered.  While watching television, a story line in her soap opera had a character having open heart surgery.  It was too overwhelming and definitely too soon.  Again, I had lost it.  Wendy had not realized how sensitive I had become.

It has been five years for an anniversary I never thought I would have to see or ever thought I would.  Initially, I wondered just how long the bypasses would hold.  I no longer do that as I have realized, just as I once lived, much easier not to worry or obsess about it.  I would miss so much.

So here ends how my life changed a second time.

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