Paul's Heart

Life As A Dad, And A Survivor

Deja Vu

It is an odd feeling really, the thought of coming full circle.  I mentioned a little while ago with my “Ghost” story on what it was like to walk the halls of a hospital wing that I was lucky to ever have gotten to see.  On Monday evening, after the ER was done messing around with me, I was delivered to my current residence.  Four floors right below me is the building that houses the rehab facility that I recovered from my heart surgery.

You want to talk about fitting a square peg into a round hole, I not only had the feeling that I did not belong there, but the stares all around me confirmed it as well.  I was 1/3 everyone’s age.  I must have given the appearance of some young punk looking for a cheap gym alternative.  From the first step I took from my bed in the ICU, all I wanted to do was make sure that I kept my heart beating.  I would never have imagined the muscle loss and loss of tone and strength that occurred so quickly.

But having had to recover before from a major issue, my Hodgkin’s Disease, I knew what it was going to take to recover from heart surgery.  And it would all start with me.   So I began my cardiac rehab and it may have been less than a week before I was challenging the therapist to work me harder.  And when they were not looking, which happened quite often in the group sessions, I took the liberty of pushing myself.  Higher inclines, higher resistance, forgetting to start the timer.  By the end of therapy, I had met their goals, but did not even come close to mine, restoring my upper body strength.  The therapist did not want me to do that kind of work out, as echoed by my cardiologist, because upper body strain, especially for a heart patient is no good.

Come on now!  I was not looking to become Tony Atlas but I did want to be able to lift a fork full of mac & cheese to my mouth.  I joined a gym and that was the first thing I did, begin working out my upper body.  Approximately two months into working out, and probably only at about 25% of my goal I felt pain.  Fortunately, it was muscular and not cardiac, but the message was coming across loud and clear.  Getting in shape was going to have nothing to do with how much I could lift, but rather how I could function.

In the years that have gone by, I have been followed by more than a dozen doctors in different sciences all watching the various parts of my body that were affected from my treatments, and now, effected by those effects.

Immunity is a big issue for me.  My spleen was removed as part of my diagnosis of Hodgkin’s.  That is what they did back in the 80′s as well as pretty much any situation that involved major internal bleeding.  It was believed that the spleen did not really do that much, and a person could live without one.  And a person can, I have.  But today they know just how important that useless organ was years ago.  It is probably the main source of your immunity from the cold, measles, strep, chicken pox, pneumonia just to name some.  My situation has left me unable to fight these things even with vaccine boosters leaving me so vulnerable to a crowded elevator or a school with one child whose parent made the choice not to have their child vaccinated against chicken pox.

I had sepsis and pneumonia just nine months ago, and here I sit again, this time with double pneumonia.  As hard as it is to believe, there were no warning signs that I was sick, until I had to be taken to the ER, once by ambulance.  Looking down from my 4th floor window, I know what I have been through.  And experience has fortunately braced me for what I may have to deal with in the future, perhaps again and again.   Pictures of me that you see, if any, do not show what I am going through, and if you see me in public, unless you know me personally, you do not know either.  But inside, I am hurt, both physically, and emotionally.  At times I can be scared.  As I have struggled over the years to find my new “normal”, I have come to realize that I will actually have a new “normal” every day, depending on what I feel like.  And that is what I hope that everyone reading this, or sharing it, will understand about not just me, but millions of other people in similar shoes whether they are facing cancer, heart disease, depression, or whatever is troubling them.  I do smile one day, and then crumble the next.

But before I get out of this hospital, I need to find out what the hell this thing is, and how and why does it get used, and how without getting the floor soaking wet.  So far I have not had any luck.


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