Paul's Heart

Why The Delay? Did I Miss Something?

All through my life, I have never been known as a complainer when it comes to my health.  The inside joke with my doctor and staff, is that if I am spotted in their office, there clearly has to be something wrong.  I do not ask for an office visit unless I can no longer tolerate what is ailing me, or it has gotten so bad, that over the counter methods no longer have any effect.

Even during my days undergoing cancer treatment, between February 1989 and March of 1990, I made no phone calls to my oncologist about any side effects that I did not feel I could not tolerate or deal with.  My goal following my treatments was to be free once again, to be in control of my health.  I wanted to return to the days when my doctor only saw me in times beyond my ability to care for myself.  Perhaps that thinking might have had the opportunity to cost me my life as I endured four months of chest pain before finding out I could die any moment.  If ever there was any example of needing to be prudent in my care, this should have been my light bulb moment.

So what takes me so long to respond yet today?  Why do I allow my tolerance to pain and discomfort to dictate my judgement?  As I sit in front of one of the doctors who specialize in the care of long term cancer survivors at one of the top cancer hospitals in the country, I confound him as he struggles to understand, why I tolerate levels of pain and discomfort.  Late side effects from my treatments cannot be reversed, but they can be slowed down, managed.  But in order for that to happen, I have to let all of my doctors know the simplest of concepts, when I do not feel well.  It should be that easy.

In the last year and a half, I have had to deal with three major issues related to my cancer history.  I had developed a swallowing issue that prevented me initially from swallowing foods occasionally, toward the end, not even able to swallow water before reaching out to my doctors.  Twice within the last nine months, I have ended up in the emergency room, once by ambulance, with fevers over 103.5.  In March, the diagnosis was sepsis and pneumonia, and this month, it was a case of bilateral pneumonia, formerly called “double pneumonia” or “walking pneumonia”.  To get to this point, my body had to have given some sort of warning signs which I either ignored or never recognized.

It was a nurse during my recent hospital stay who helped me to recognize what I cannot see or sense.  At one point in my life, I had been heard saying that I deserved everything that has happened to me since I made the decision to save my life from cancer.  It was a choice that I made, to either let the cancer take me, or put up with the costs of the treatments and surgeries that saved my life.  No one else made that decision, except for me.  But it was not so much a price that I paid every day for my cure, but it was a tolerance that I was unknowingly building.

I have had over two weeks to try and figure outwhat could have possible led to my latest medical crisis.  There had to be some sort of warning that I failed to recognize.  There were actual spots on both of my lungs.  I deal with chronic pain every day.  How do I differentiate what is old and which is new pain?

Someone who constantly calls their doctor about every little pain, sniffle, cough, or ache, is referred to as a hypochondriac.  And this is one of the main reasons that I speak for only myself, and perhaps other cancer survivors, why we do not react sooner.  So that we are taken seriously because quite clearly, when it gets to the point of sepsis or double pneumonia, there will be no mistaking it.  There will be no accusation of hypochondria and the resulting dismissal.  And because of this, we become tolerant.

Though there are currently studies on late effects on cancer survivors, there is still so much more to be learned.  but for those of us who know what we have been through, we owe it to ourselves and our families to not underestimate anything that does not feel right with our body.  Of course, it is one thing to talk the talk, another thing to walk…

Med-Alert Bracelet

Just how important is the Med-Alert bracelets, bling that is meant to save your life?  I bought one four years ago, and of course its condition looks like I have had it that long.  I am not known for wearing bracelets or watches.  I really do not like anything around my wrist.  However, my investment of a little over $30 has already been counted on once.

A Med-Alert is a tag that can be worn on your wrist as a bracelet, or around your neck as a necklace.  Paramedics are trained to look for these identification tags as patients know this is the only way that they can communicate if unconcious.  My particular tag only measures about a half inch wide by an inch and a half long.

On the front side it shows my name, identifies three main medical issues with me, treatments I was exposed to and when, and then refer to the back side of the tag.  On the reverse side, it lists two of the main doctors I deal with, orders to call them immediately, and also a note to refer to my wallet for additional information.

My wallet contains two laminated information cards.  The first card lists all the things that my body has been through, or put through, a miniature medical file of diseases, wounds, treatments, etc.  It is amazing and overwhelming at the same time to see the abreviated version of my health history.  The second card deals with fevers and infections.  There is a special protocol that needs to be followed for me being asplenic (no spleen).  Actually it should be applied to anyone without a spleen.  A cocktail of antibiotics are to be started IV assuming I have an infection if I report to have a fever.  In the meantime, blood cultures need to be done immediately (to see what the infection might be) which is why they antibiotics need to be started right away, as cultures take time to grow.  A case of sepsis has close to an 80% chance of mortality after 24 hours of devloping.  There is no time to wait for test results.

My bracelet is pretty well scratched up as it has never left my wrist.  So it has been bumped and scratched, but it is still able to do the job it needs.  This past March, my personal system was put into play as Wendy called for an ambulance at 4am.  The EMT’s noticed that I had the bracelet, read the bracelet, and then asked Wendy about my wallet with the information cards.  Without me being able to speak, the EMT’s now knew my medical history and the extra care I would need.

Days later, I was told that my blood levels were so high for sepsis, that I had to be septic for at least 24 hours prior.  So I was already at risk.  Delays definitely would not have been in my favor.  The doctor was able to order care stat, that is medical lingo for “now”.

In this particular case, I believe my bracelet saved my life, and there is a good chance it will be needed again.  But there are so many others who would benefit from alerting an unsuspecting EMT:  diabetics, cancer history, high blood pressure, etc., any kind of condition that could affect emergency care with you not being able to communicate is crucial.

A Ghose Of Health Crisis Past

I had an aunt year ago who had taken a nasty fall.  In fact, eventually it will be what probably led to her death.  We had gotten a call that she had been admitted to the hospital, and things were not looking good for her.  Wendy and I had stopped by the hospital to either visit, or pay last respects.  We had no idea how things would turn out.  Our daughters were with us.  Our daughters were with us, but after visiting with my aunt, I decided it would not be a good idea for them to see her in her present condition.

You see, the hospital that she was in was the same hospital that I had my open heart surgery.  My daughters knew this.  They knew that I had survived.  I knew that it would not be the last time that I would find myself there.  If by chance, my aunt would pass away in that hospital, and that would be the last memory my daughters would have of their aunt, then there would be the chance that they would believe that I could face that same possibility any time that I would go to that hospital, perhaps any hospital.  The last image that we remember a particulare person or memory of a place can be powerful and overwhelming.  Sometimes a flashback can be just as traumatic as the painful incident itself.

Last week, I was focused on a loved one, in the hospital I was all to familiar with.  He was in for a procedure that many of those in the medical world, patients, family, and doctors call very routine, cleaning of the carotid artery.  Both are fairly blocked seriously at 85% on one side and 80% on the other.  A decade ago, he suffered a severe heart attack, so to me, this was going to be anything but routine.  I delivered him at 5am for his procedure and it would be several hours before they actually started. 

The surgeon came out to the waiting room just after noon, and told me that he was recovering.  Except for a slight blood pressure issue in the beginning, the surgery went well.  I would be able to see him briefly in a little while during recovery.  I was sure to find out all the things he would need to follow once discharged, hopefully in a day or two.  I also made it a point to inform the surgeon, just how stubborn my relative could be.  I told the surgeon to make sure that he got it across to him how crucial it was to follow discharge orders.  He was a caregiver for his spouse and it was imperative that he recovered fully to return to that role.  He would need to accept help, something a man with a whole lot of pride was not in the habit of accepting.  My point was made.

I got the page that I could go back and see my relative.  It was not an unfamliar sight for me seeing someone hooked up to all kinds of machines, tubes coming out of someone, and medical personnel buzzing all around.  My first experience in this environment came nearly thirty years ago with a dear friend who had been in a near fatal car accident.  I have been in this type of room many times, for myself, and for others.  I have made it a habit that I do not panic, cringe or show any other signs of being uncomfortable.  As of late, it has been important to retain my composure to ensure that my ability to make decisions in these time are the proper ones.

He obviously is not used to being a patient and looks quite uncomfortable.  The surgery has left him with an excruciating pain in his ear on the side of his head that had the carotid artery worked on.  The one thing I told him was that this was normal as the artery runs long his ear canal and if he had pain, he had to tell his nurses.  The nurses could manage this for him.  He was also not going to be pleased to find out why they told him before the surgery that he was not going to be able to wear his underwear.  I told him that he would be fine and that the surgeon said everything went well and I would see him again in his room.  I went back into the waiting room to wait to be told that he was being moved and to where.

Approximately at 2pm I had been given his room number and proceeded to take his belongings.  The wing of the hospital was a familiar building to me though it had not hit me emotionally.  As I continued to walk down the hallway from the elevator that I just took to the lower floor, it finally dawned on me.  The last time I had been in this hallway, I was in a wheelchair late April of 2008 being escorted to my wife waiting in the patient pickup following my heart surgery.  Suddenly my knees felt weak.  I turned the corner to head towards the Kasych Wing elevators.  I looked at the slip of paper with the room number on it, 3K25.

In a sudden rewind, my mind went back in time, going in reverse, getting out of the car, having been assisted from the wheel chair, rolled back from the hall, and back up the elevators of the Kasych building.  But back then, the building was not called that.  As I came out of the elevator, I was no longer in the present, there to care for my relative.  I was there reliving a time that I never would have thought I would ever go through, heart surgery.  Directly in front of the elevator, was the hallway that I spent so much time recovering.

I do not recall how long I was in intensive care following my surgery, and I have never asked.  There were no windows so I had no concept of time.  I know that I had three nursing shift changes between Jackie and Joe, and there was a visit from a nurse named Heather that I had the day before for the procedure that had originally been planned to save my life, a catheterization with stints.  However long after it was that I came to, and disconnected from some of the machines, I was given the challenging news.  I was being moved to the room where I would spend the rest of  my time recovering.  The bad news?  They expected me to walk there.  I went from exercising  nearly two hours a day, to being exhausted when I would blink my eyes.  There would be a wheel chair following me to sit and rest while I walked.

Like my relative, I am stubborn and do not like help.  Once I was removed from the bed, and on my feet, I began that journey, the wheel chair close behind.  From the second floor of the hospital of the cardiac intensive care unit, with my enterage, I got to the elevator.  I was strongly advised to sit down, but was afraid to because I had a goal to achieve to prove that I was going to get through this, because at that moment, I did not think I could.  As I got off the elevator, there was the hallway that I was standing in right at that moment currently.  I was warned that it was still going to be quite a distance to my room and it was my option to be wheeled the rest of the way.  They were pleased that I had gotten as far as I did.  But I needed to go the rest of the way.  I stood there staring down that long hall way then, and I did it again now.  Tears began to fall as I remember that time, the ghost of me standing right in front of me.  Telling me that I could get through this and so could my relative.  And I began to take those steps again. 

It is nearly a week since, and he is at home resting with his wife, anxiously waiting to return to his normal life and habits, go back to work, and be independent again.  He is glad to have had me by his side, but not nearly as glad as I am that he made it through this.