Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “The Heart”

Why Is Covid19 Different To Me?


Why is Covid19, also only known as the Corona Virus, diff  erent to me than all of the other viruses and outbreaks I have seen over my survivorship?

First, let’s start from the beginning.  I lost my spleen in 1988, went through chemo and radiation therapies in 1989 and 1990.  Now, while I am jumping ahead of the discussion, it is these two factors that lead me to the status of being considered “vulnerable” because of the damage caused from those events in my life over thirty years ago.

Now, to be fair, I was unaware that I was “vulnerable” for over half of my survivorship.  It was not until 2008, that I learned the many health complications that I have, that leave me “vulnerable.”  So, let’s look at the time period up until 2008.  The following were viruses or outbreaks as documented by the WHO that were dealt with in the US.  I will call this “period A”.

1996  Dengue

1998  Influenza

1999  Encephalitis

2000  Acute febrile, meningitis

2001  Anthrax

2002  West Nile

2003  Influenza, SARS

2004  SARS, Avian Flu

2005  Avian Flu

2006  Botulism, Avian Flu

2007  Avian Flu

Along with the annual flu, these were the things that we here in the US had to deal with.  As mentioned, this is per the World Health Organization (WHO), and I need to stress the importance of the WHO.  Because if you saw the list of diseases and viruses each year that were listed for all of the other countries around the world, had they reached over here, it is likely we would have an entirely different world, if any getting around the turn of the century.

My point with calling this grouping of years, “period A,” because at this point, I was still unaware of how “vulnerable” I was.  I got no vaccines, even for flu.  I never came down with any of these viruses and on at least two occasions, went right into the firestorm of two of those virus, SARS in 2004, and bird flu in 2006 to adopt my daughters.  I was given some antibiotics to take if I felt ill, but that was it.  Those meds were not used.  In all honesty, I never gave any of these viruses any thought.

But in 2008, things changed in a big way.  I had discovered, that side effects from my treatments had progressed over the years, and without me being followed up, had gotten very bad.  So much so, I had to have open heart surgery to save my life, moments away from certain death from a fatal heart attack.  But as I learned all of the problems that now existed with my body, so did another issue, my lack of immunity, the ability to fight off infections and viruses.

Upon becoming the patient of a long term survivorship clinic, one of the things researched about my body, was my immunity.  Blood titres would reveal I had no immunity against pneumonia and meningitis.  And so, along with a lecture for me not getting annual flu shots, a personal preference, and to my doctor an unfortunate risk I take every year, he did insist on me getting boosters for pneumonia and meningitis.  The issue I had with that, was I was given those vaccines prior to my having my spleen removed for my cancer diagnosis.  These vaccines were supposed to be lifetime.  Losing my spleen evidently changed that.  The problem was, that a single booster of each vaccine, did not cause my body to react.  I needed two additional boosters for pneumonia and an additional one for meningitis to finally show titres.  But besides showing titres, it should my body lacked the ability to fight infections and viruses.

So, it is only normal then, that I should be concerned about news of a potential virus outbreak.  I present to you, “period B”

2009  H1N1 (swine flu)  PANDEMIC LEVEL OF SPREAD

2010   H1N1

2012  Corona Virus, Hanta Virus

2013  MERS, Corona Virus

2014  MERS, Ebola, Entero Virus

2015  Zika, Measles, Lassa Fever

2016  Salmonella, Elizabethkingia, Guillaine-Barre Syndrome, Zika

2017  MERS

2018  Listeria

2019  Measles

Now again, we always had a flu that we were dealing with each year.  And something else I just noticed as I was going through this section, especially over the last few years, very little information mentioned on the WHO web site as far as issues in the US.  And I know, that we had other outbreaks to deal with, that were mentioned for other countries.  Out of curiosity, I did have to look up what “Elizabethkingia” was, especially since it happened here.  It is a genus of bacteria found in soil, leading to a pathogen in hospital environments.  I did not research that any further.  Trying to stay focused here.

So, unlike “period A” where I had no reason to feel concerned, “period B” was different because of my awareness.  I still declined flu vaccines, and I also had to receive several more boosters of pneumvax and one more for meningitis.  The only exception that I made was in 2010, when my doctor was finally able to convince me of the need to take the “swine flu” pandemic seriously and get the vaccine (that will be another post), as well as the annual flu vaccine.  Well, as if my body was not challenged enough with those two shots, got another pneumonia booster that week also.  And that was the last time I got any vaccines.

But just as I did with “period A”, “period B” was pretty much business as usual.  I went to work.  I went to the doctor.  I went to the emergency room many times (documented on this blog for the many incidents).  But not really any concern.  Why not?

Why is it different in 2020 with Covid19?  At least for me.

Declared a pandemic, just as the swine flu in 2010, Covid19 has huge unknowns.  At the time, there was not even any testing available.  All we would here were symptoms from the effects of the virus, most notable, pneumonia, a condition that I have dealt with at least twice before, and combined with my other vulnerabilities, put me at high risk.  Unlike 2010, there is no vaccine, still, and no known treatment other than guessing here and there.  And the other big difference, the ease of the spread.

But there is one notable difference for me.  And that is the warning that I have gotten from my doctors.  Sure, I watch television, and for those networks that actually reveal facts such as numbers, that information aligns with my doctors concerns.  And while all of the medical experts of the CDC and NIH and FDA are recommending social distancing and stay-at-home and masks, my doctors did not mince words.  Do not travel.  Stay at home.  Stay away from as many people as you can.  You may not have a chance against this virus.  Unlike the other outbreaks, there is no cure, there is no vaccine.

I trust my doctors.  Information that I get from the news, no matter who, it does not get a priority over what I get from my doctors.  I have re-scheduled medical appointments.  I have cancelled visits with my children.  I have literally only seen less than a handful of people over the last two and a half months.  And unlike 2010, or any of the years, I actually do know people who have contracted Covid19, and at least one person who has died from it.

So yes, this is one time, I must take this type of situation differently than before.  Not fearmongering.  And my hope, that at some point, we get through this, and like the other years, I have not been exposed to Covid19.  I know that I have done all that I can.

Advocates In Training


My daughters have witnessed a lot in their short lives so far.  They have seen my experiences with my health.  They know what it is like to grow up in a house that has gone through a divorce.  Experienced in adoption.  That is just what they have been exposed to personally.

Then there are the things that they go through when they are away from either of us parents.  School lock downs, bullying, suicide, teen drug and alcohol and tobacco use are constants in their environment.

Both girls are very aware of the world outside of their home as well.  The homeless, the poor, the disadvantaged.  They know quite easily, it could be them in someone else’s shoes.

And then of course there are the things that they learn in school from science to health, history to politics.

I did my best with them, from the earliest of ages, for them to have empathy and sympathy for others.  My older daughter, not even of school age noticed a group of special needs kids, while eating at an ice cream shop.  While she may have noticed that some looked different, she only saw them as regular kids.

I have never heard either of my daughters even mention someone’s skin color.  Both are aware that they are not Caucasian, have Caucasian parents, yet the question of “why is our skin color different than everyone else’s skin color?”

Years ago, while visiting Philadelphia, my daughters saw their first homeless people, not the purpose of our visit, but led to a long and lengthy conversation about the “how’s” and “why’s”, and what could we do for them at that moment.  Just two years ago, while doing some grocery shopping for one of my visits, a less-fortunate woman approached us, asking us if we had anything we could spare so she could buy some food.  I will admit, there is a 50-50 chance I will help, just because, who am I to judge if someone is legit.  But in front of my daughters, I faced another test.  Lead by example, or teach a very bad example.

Do I teach them that it is better to be benevolent, without judgement?  Or do I show that that it is okay to lie.  Or do I make it more complicated than that, that it depends on what you are lying about?  Those who understand the mind of a child, knows there is a reason that there are age limits for a reason, because in many cases, the minds are not developed enough to make the right decisions.

I personally feel it is an awful lot to expect of a child to figure out the difference between telling the truth, and understanding potential consequences of telling lies.  We have all been there.  The phone rings.  A child answers the phone.  The caller asks to speak to a parent.  The parent says, “tell them I’m not home.”  As adults, we do not see the big deal, but as children, they get confused.  Telling lies is bad.  But their parents do it.

I could have easily have told the stranger that I did not have anything extra to give, because I really did not have any extra, as I budget myself when I travel for the visits with my daughters.  But as I said, I have taught my daughters to be empathetic, even if it means “giving the shirt off of my back.”  As I looked at my younger daughter, I knew what my answer was going to be.  My daughter, knowing that I do not have much, saw me pull out some change out of my pocket, handing her a $5 dollar bill.  The woman expressed her gratitude, and both my daughters had smiles on their face, believing that they just made someone’s day even just a little bit more better.  Though none of us talked about it, there is also the chance that we all realize, we could have also just been had.  But again, I have raised my daughters to see the good in people.

It is one thing to be aware of problems and issues.  It is another to do something about them.  And this is where both parenting and schooling play the most important part of teaching a child how to be a good advocate, to express themselves properly.

Now older, my daughters have opportunities in school, where they must present “arguments” or opinions to certain discussions from English literature to historic events and world issues.  Some of these opportunities may be in the classroom, or in front of a debate level stage.

My daughters have seen many opportunities to witness me standing up not only for myself, but for others as well.  They have seen the good and the bad.  It is important to them to see the consistency that I do not sacrifice what I believe in.  Just as important, they must also witness that I do not let any defeat deter my efforts.  They have learned that it is important to be educated about the cause that is supported, and then also to learn how to communicate their points of view, especially in the firestorm of an “all out” opposition, to never stoop to someone else’s level because that is not who they are.

It would be easy if people just did the right thing all of the time.  But the world does not work that way.  It would be just as nice if we could have a simple discussion to point out the needs to correct a wrong situation, and have the humility to accept the error, instead of defending pride to the death, and “better them than me”.  My daughters have learned, in all of the areas that I am an advocate for, health, cancer, adoption, child custody issues, discrimination and more, I do not give up.  A loss is just that, a loss, not an end to my efforts.

Pushing The Button Of A Health Advocate


Ironically, I was actually writing a different post about advocacy when this happened today.

Yesterday was a day that many of us were watching, a hearing involving a whistle blower complaint, pertaining to issues related to the handling of the Covid19 crisis.  Now, because my post is seriously not going to have anything to do with the hearing or politics itself, I still need to make at least some reference to it.  But as you will see, what I am discussing is not a limited type of behavior.

So during the hearing, one US Representative, Mullin, pictured on the left, resembling a cross  between Triple H of the World Wresting Entertainment (WWE) and another jacked-up angry US Senator Jim Jordan, questioned the complainant, pictured on the right, Dr. Richard Bright.  But instead of asking questions pertaining to the complaint or at the least going for a conspiracy approach of being a bitter employee or anti-president, like representatives on both sides of the aisle were doing, this Hulkablowhard went for straight character assassination.  This is the problem that I have.  And it fired up the advocate in me, because what happened was just plain wrong.  And it has nothing to do with politics.  Mullin was nothing less than a monstrous asshole for the way that he displayed himself.

In going after Dr. Bright, he began questioning his current work status, then his payroll status, then his health status.  What did this have to do with Dr. Bright’s whistle blower complaint?  Absolutely nothing.  It was a straight up attempt to assassinate the character of someone.

What position was the doctor currently in?  What is his current attendance status?  Questioning the transition of sick time to vacation time?  The doctor’s payroll status?  Health issues of the doctor?  And then the biggest insult, and one that should forever label Mullin as the ultimate scum, implying the doctor’s health was too ill to get to work, but not to testify before Congress.  Not one question about the actual complaint or anything about the current crisis and any role the doctor may have had.

It is clear what Mullin was trying to do.  I have seen it many times over my years as an advocate.  Pain in the ass does something wrong, gets punished, but does not cower like a beaten dog in remorse, resulting in an even stiffer penalty.  Employee defends himself, perfectly as the employee has done nothing wrong other than to draw the ire of a superior who wants things done differently.  Then the attacks become more about the individual, and not the work history, or even the incident itself.  We have all likely been there.  And we cannot help but want to stand up and cheer on the victim of this bullying.

Years ago, I was a union shop steward for a major company.  For those unfamiliar, the shop steward is representative for the union member, somewhat like a lawyer, there to defend the employee with a bargaining unit contract, regardless of the infraction.  How hard are supervisors driven to “get” employees?  It all depends on how much you have irritated that supervisor.  A friend and former co-worker used to describe me as “an asshole.”  But followed it up with this comment, “but you know what?  You are a stand-up guy.  You stand by what you say, and you support everyone equally whether you get along with them or not.  You do your job as a steward and no one can ever question that.”

One incident involved a co-worker who was out sick.  Having only one car, and needing to go to the doctor later in the day, she dropped off her husband at work, then dropped her children off at school.  But, instead of going straight home, get this, you might want to sit down for this, she pulled into a Dunkin Donuts to get a cup of coffee.  She was spotted by one of our supervisors.  I felt we should have notified Graterford Prison to alert them of a new inmate coming for the crime that had just been committed.  Management did not appreciate my cavalier attitude any more than I appreciated wasting my time having to defend someone who claimed to be sick, and being sick, should have not been drinking coffee.

Another incident involved another co-worker, that I had represented through the various grievance steps, only to be removed, um… deterred by supervision and made unavailable to attend the final grievance meeting, leaving someone else to attend in my place.  I had been successful up to that point in protecting the employee, and clearly, management was really intent on making an example, and not at their expense.  I made the decision that I would use personal time, that I could not be denied, and then attend that meeting after all.  At the door, I was denied entry, stating that I was not on company time, therefore ineligible to attend.  After a lengthy protest, company and union officials went back inside to discuss the situation that I had presented in my insistence.  Ironically, or strategically, this went on for over an hour.  The attempt was to get me to spend and waste the personal time that I had taken, now expiring.  Obviously underestimating my morals, I requested additional personal time, clearly willing to spend it all if I had to, to defend this employee, which now clearly, I knew, a fight I was winning.

Personally speaking, following my open heart surgery back in 2008, after spending a week in the hospital, I was sent home under strict recovery orders.  One of which, was to make sure that I took some walks, not faced paced, but just for the point of keeping my body moving, not to mention that getting outside, would help keep my spirits up.  During that first week, I probably did not walk more than a hundred yards, but it was a long a busy street, a street that many of my co-workers traveled to get to work.  Yep, you guessed it.  My phone began to ring from both ally co-workers, and one supervisor who looked out for me.  I was being warned that I “look great” after being spotted walking and that “there was no reason he should not be back at work.”

Now, forget the fact that less than ten days prior, I had my breast bone cracked open and a major heart surgery performed on the heart.  Anyone who has ever suffered a broken bone, know, bones do not heal overnight, usually requiring a cast, which clearly they cannot put on a person who has had heart surgery.  But evidently, all of these passersby had enough medical knowledge, and about me, to determine my work status.  Of course, that set off a whole other set of challenges, as my doctor had ordered me out of work for six months to allow the bone to heal, compromised by the very thing that caused the need for the surgery in the first place, radiation damage would hinder control.  I now had my employer insisting on their own surveillance of my recovery which they insisted on my doctors seeing me weekly, though my doctors stated they had only intended to follow me up in three month periods.  Definitely a waste of my cardiologist’s time that he could have been seeing other patients, my status never changed, and I would still remain out for the recovery plan as prescribed by my doctor.

So of course, when I saw this jackass from Oklahoma attack, and that was what it was, attack Dr. Bright, my advocate bat signal went full blast.  But of course he has a team of people looking out for him.  Clearly Mullin violated Dr. Bright’s HIPPA rights, not necessarily as the doctor, but in continuing to express Dr. Bright’s personal health publicly.  And he should face repercussions for that.  It should also be noted, Mullin is not a doctor, but a plumber.  Yet Mullin felt qualified to interpret and explain the impact of hypertension, even if spontaneous and the dangers posed when not managed.

We are dealing with a very serious crisis right now.  And dealing with anything other than science and facts is only adding to the complications and wasting time bringing an end to this pandemic.  What Mullin did was a travesty and embarrassment to himself, our government, and the people of Oklahoma.

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