Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Side Effects”

Understanding Steroids


When we think of steroid use, two popular examples come to mind, pro-wrestling and professional sports.  Steroids of course increase size, strength, and power.  Long since banned in most activities, steroids do have an actual medicinal use, and there is a likelihood at some point in your life, you may have, or will be given some form of a steroid.

Doctors often prescribe steroids to help relieve pain or inflammation, or in the case of breathing issues such as asthma and allergies, much needed relief.  In fact, during my days of chemotherapy for Hodgkin’s Lymphoma over thirty years ago, Prednisone, a popular steroid, was part of my chemotherapy cocktail to help rebuild muscle cells killed off from the chemo attacking all healthy cells.

Prednisone is often considered a quick fix to certain situations, like the time I had an extreme case of poison oak exposure.  I have also seen it used in cases of respiratory attacks resulting from COPD or other lung issues.

But there is a dangerous side to using steroids, requiring monitoring by a doctor, which is why they have to be prescribed.  Depending on how the pill prednisone is taken, most times it is prescribed in a “step-down” manner, 6 pills one day, 5 pills the next day, 4 pills the following day, and so on until you get to the last single pill on that final day.  This is because as the medicine helps you, it also leaves you vulnerable by repressing your immune system, simply put, it shuts down your immune system while you are on it, leaving you vulnerable to illnesses and infections.

Medically, there are a whole range of other issues a result of taking steroids.  Forget the muscular, but the skeletal, high dose usage can lead to Osteopenia.  If that sounds familiar, because it is related to Osteoperosis.  One of my long term issues is Osteopenia as a result of the 8 months I took the high doses of prednisone.  I am at an increased risk of breaking something if I fall.

Basically, steroids can have an impact on any number of systems of the body.  The most critical, is the cardiac system.  Which is why it is so important, as we are still dealing with finding a way to treat Covid19, though Dexamethasone (a steroid) is showing promise as a treatment for advanced disease.  But to someone who has cardiac disease, or worse, is not aware they have cardiac disease, steroids can cause permanent, if not fatal damage.

One fact about steroids I was unware of, false positive testing results.  I used to be employed in an area that required annual Tuberculosis testing.  One year, I ran late with the surveillance, and prior to that testing, I received an injection of Depimidrel, an oil based steroid for seasonal allergies I got, only once a year.  Clearly I did not have TB, but the test resulted in a false positive, requiring a chest x-ray to confirm that I did not.  Depending on the situation, this can cause quite a problem.

Steroid use also causes an increase in hunger, and also fluid retention, resulting in what a lot of my fellow Hodgkin’s survivors refer to as “moon face”, a result of an extreme weight gain from the months on that drug.  I actually gained 50 pounds while on chemotherapy for that reason.  So, at the end, I looked nothing like the stereotypical waif-like chemo patient, other than my bald head.

But currently, steroids are getting a bit more recognition, because of Covid19, and one particular patient receiving them, the President.  To be clear, this is not a political post!  Steroids can and usually do, have any number of psychological impacts on the patient that takes them.  Issue range from depression, amnesia, anxiety, irritability, anger, inability to concentrate, rage, and so on.

Think about it.  If you are old enough to remember when steroid use was prevalent in the NFL, how many really aggressive players that were, resulting in other players getting hurt.  Too many athletes on steroids committed suicides.

But I was not a professional athlete.  I was a cancer patient.  And I was warned by my oncologist, that mood swings were a huge concern.  I scoffed at him, because I was, and still am, a real chill person.  Boy was I wrong.

About halfway through my treatments, while at work, I was having issues with a co-worker, who was a bit disgruntled over his pay.  He was known to challenge others in spite of the fact that we were forbidden from discussing payroll among each other, and as it turned out, for good reason.

He had been after me for quite a while about how much he thought I made, and he was not happy about it.  I had been there less time than him, but I seemed to have more responsibilities and relied on more.  We were not union, so that was not a concern.  But he caught me the wrong way on the wrong day.  I snapped.

Uncharacteristically for me, I exploded.  “Jesus Christ!”  And I whipped out my payroll stub to shut him up, and prove to him once and for all, that he made more money and to leave me the Hell alone.

Oops.  In spite of me being there less time, it turned out, I was being paid more, for whatever the reason.  But now a whole other can of worms had been opened, violating company policy on discussing individual payroll.

My point is this, it is not just mainstream media making an issue about the president being given Dexamethasone for treating his Covid19.  The concerns about receiving the high dosages of steroids is legitimate.  And given his position, and the decisions that need to be made, combined with his temperament, the concerns for any ill emotional reaction is a big deal.

To get through his treatment, is expected to last more than a week, and then the drug itself must leave the body, taking another one to two days.  It is easy for this former steroid patient for me to see the effects that the medicine is having on the president.

The Toughest Part Of My Heart Surgery


A post from a fellow Hodgkin’s Lymphoma survivor triggered an emotional flashback for me recently.  A young parent themselves, one of their main concerns, is for their young children, and this will be the first time that this friend will be apart from their children for any amount of time.  Even more relatable, are two main factors, this fellow survivor is having open heart surgery, and their children are the same ages as my daughters were back in 2008.

My daughters were three and five years old, and had never been apart from me.  I went from just telling them, I had to go stay overnight somewhere for something special, but would see them the next day, to the horror 24 hours later of thinking I would never see them again.

A blockage had been discovered that was believed correctable with a simple stent being placed.  I would be up and going in just a week, an overnight stay in the hospital.  No big deal.  I was still coming out of the anesthesia that day, when the doctor was informing my family, my situation was more grave than thought, and instead I would need to have open heart surgery the next morning.  You can read the story “CABG – Not Just A Green Leafy Vegetable” for that whole situation.

But as I came out of the fog from the anesthesia, and began to understand the severity of what I was facing, there was even a more daunting concern for me.  If anything bad happened to me during this surgery, I never got to see or hold my daughters again, especially before the surgery.

I am a firm believer in not discussing things with children that are not age appropriate, and this was something that was not going to be discussed with them in great detail.  But that did not make my heartbreak any less.  Even if the surgery was successful, I would be in the hospital, expected to be about a week in length.  I had never been apart from them at all, even until the day before for the stent process.  I got to talk to them on the telephone that night before, and that was going to have to be good enough.  In less than eight hours, I would be taken down to the operating room.

Three days following the surgery, out of the ICU and in a private room, I still had some tubes and wires, but not nearly as many as when I first came out of the surgery.  At that point, it was decided to bring my daughters to visit me, a surprise visit, because they were all I could think about.  My older daughter was curious about all the equipment that I was hooked up to.  And the joke, er… concern, was that she would not do to me what she did to her mechanical horse Butterscotch, when we were not looking and she started pulling the horse’s wiring apart.  My younger daughter on the other hand, sat on the foot of my bed.  This was the first either of them had seen me in this type of condition, and clearly she was scared.

The picture above, was taken a couple days after we got home, no worse for the wear.  In fact, my younger daughter had resumed her playfulness with me, forgetting the fragile area of my chest, starting from across the room, running full tilt at me, unsuspecting, planting her head into my chest like a battering ram.  That was when that “heart” pillow came in handy besides my coughs and sneezes.

My daughters would witness another event, just as severe, and probably more scary, because they watched it happen in real time.  After just celebrating my older daughter’s birthday  that day, an ambulance crew was rolling me out of our house on a stretcher, again facing a dire situation, septic shock, due to a specific type of bacterial pneumonia I was unaware that I had.  One of the only memories I have of that early 4am event, was the look on my daughters faces as I was rolled by.

As I talked to my fellow survivor, one of the things I wanted to do, as I do with others in our situation, is to share our experiences, as to offer some sort of comfort to the stressful event soon to take place.  I encouraged her to focus on the surgery.

I had spoken with both of my daughters this evening, to gather their perspective on what happened those two time periods, the second time period they were five and seven years older.  Neither really remembers anything from my heart surgery.  And all either of them really remember of the second episode, was all the policemen and paramedics in the house.  It was never a thought to them that I would not come back home, though it was unusual for me not to be home.

For the second time, I had been apart from my daughters.  And this would happen again several times.  It never got easier.  Just as my fellow survivor feels I am sure, our children mean everything to us.  Fortunately they were at an age, where they really did not need to know or understand how serious everything was.  All that mattered to me, was that they knew I would come home.  And with every time something happened, this was how I handled it.  Each time, they believed I would come home.

Late in their teenage years now, they are learning more about my health history, and the origin, my battle with Hodgkin’s Lymphoma and the treatments used to save my life.  They can handle the details as I have given them in small amounts, and not in vivid detail.  As adults, they will learn the seriousness of the things I face, because as they will be my medical proxies, it will be important that they know all the details.

My daughters do not recall anything from my heart surgery, and have very few memories of the second event.  And I am glad for that.  They have witnessed enough with me in the hospital.  They know my situation is serious.

More importantly, they know that they are the reason that I keep fighting when faced with these challenges.  My divorce has caused quite a bit of separation, and while I do miss every moment I wish I could have with them, it pales in comparison to the emotional pain I felt back in 2008 when I thought I would never see them again.

Yet, here I am.  Another year closer to seeing them graduate, hopefully go to college, and perhaps start a family of their own.  Something back in 2008, I never thought I would see.

In The Worst Of A Crisis, Can Behavior Get Any Worse?


Like many areas of the United States, my locality is dealing with the Covid19 crisis as best as it can.  Eight months in, scientists and our government leaders still struggle to learn about this pandemic, how to treat it, and how to prevent it.  All politics aside, as the US is quickly approaching 200,000 dead Americans, and over six million Americans infected, there is no denying the reality of this crisis.

As a long term cancer survivor, having various issues related to my health history, I am considered “vulnerable”.  Needless to say, I pay very close attention to details and data, that I gather personally from the medical professionals that I deal with personally.

From the beginning, I saw the line drawn in the sand that instead of drawing us together as other national emergencies have done, instead pitted us against each other.  Throughout our history, we have dealt with major epidemics from measles to polio to the flu of 1918.  We know when faced with a health crisis like this, they are real.  People actually died.

Which is what is maddening to me.  Right from the gate, when we were warned about Covid19, and a decision was made to downplay the serious and mistaken potential of spread, our country had done what it had never done before, denied reality.  But why?  Because, instead of saying to ourselves, “hey, this is getting really serious,” some decided to take the approach, “don’t attack the president.”

If anyone has been witness to a brush fire, and living in Florida I have experienced that, it does not take long for a spark to ignite and spread to 10,000 acres.  And it depends on how much time you waste, grabbing the water bottle over by the rock to pour on the growing flames, or reaching out for the professionals that determines the devastation.

In the case of Covid19, “a bottle of water” was poured, denial that it was serious enough to require extra attention.  And that denial actually exploded to a full blown inferno, as some reinforced their protection of the decisions by the president, to calling it a hoax.  Keep in mind, a hoax gets defined as something not real.  Nearly 200,000 dead Americans alone from Covid19.  Far from a hoax.

The strategies to deal with this crisis only made things worse.  And we can argue constitutionality til the cows come home.  We have today has not worked.  We needed a plan from the top.  Instead, it got passed down to the states to fend for themselves, and then within the states, leadership said it was up to the local governments to figure things out.  I am going to get to that cluster-F in a moment.

We have the professionals in place to tell us what we need to do.  Whether they come in the form of mandates or recommendations, they will help.  But again, that boils down to leadership, on all levels, to acknowledge and set example of following the recommendations, most made by the CDC.  And that should be all there is to it.

But the problem is this.  Our federal government has teeth.  Our state governments have teeth.  Our local governments try, and if faced with unsurmountable criticism and objections, may not withstand doing the things that are recommended, instead falling on the “common sense of the people to do the right thing.”  And if the people do not do the “right thing,” enforcement or mandates are met with resistance.  And it is the “why” of the resistance that make no sense to me.

A couple of months ago, our county held an emergency meeting to determine safety precautions that our federal and state governments would not do.  I will only discuss the one option, as it is the one getting the most attention.  The county was taking a vote on mandating masks in public.  Again, this is something recommended by the scientists at helping to reduce the spread of this deadly virus.  It is something that all people with “common sense” should see as a good thing.

I did not take notes of that meeting, but it was quite contentious.  Most of the public speakers spoke against any mandate.  I really do not recall their reasons.  Unfortunately I missed any professional testimonies that were given most likely to support the mandate.  The mandate went through by a vote of 3-2 and would go until last week when another meeting would be held to discuss renewing or letting the mandate expire.

This meeting, I paid a lot more attention to, because I follow the numbers for various reasons, not just because I am a nerd.  I have reasons besides my health for knowing if we are getting better or worse.  So, the first part of the meeting, I did hear the testimonies of the local professionals, doctors on the front lines, who brought data to support the success of the efforts of the mask mandate since it was first imposed.  The information was all there in black and white, lower cases, lower hospitalizations, and lower deaths.  Our county had been on an upward climb until that mandate, and now the numbers were lower.   And really, that should have been the end of that.  If you want to know how to make a good chicken florentine, you ask a chef.  If you want to find out how to change out a transmission on a car, you ask a mechanic.  If you want to know how to deal with a lethal pandemic, you ask the doctors and scientists.

Following the testimony of the local medical professionals, came public commentary.  And as the title of my post suggests, it was not good.  If I had to guess, those opposed to extending the mandate made up maybe 80% of the public comments.  But it was their reasoning, and their methods that left me shaking my head in disbelief in what I was witnessing.  The comments about wearing a mask, made as much sense as someone taking something out of an oven without oven mitts.

The following is the list of arguments against wearing something, while not perfect or guaranteed, could still have a positive impact on getting through this crisis:

My choice faith will get us through charts by professionals prove nothing death counts fake social engineering experiment health department conspiracy silent majority are fed up lack of intelligence stats are inconclusive right to breathe freely rights and freedoms media propoganda personal responsibility lunacy busy living fear porn Natzi rule moving the goalposts totalianarianism wearing a diaper on the face about an election seizure of property oath of the government to protect the constitution not the people overreach communism hoax being lied to okay with dying medical negligence and finally, pharmaceutical profits.

I intentionally left out commas, because I wanted it to be a list, but when I typed it up, I realized how long it made the post look, and did not want that appearance.  But among all of these reasons people gave not to wear a mask (some were repeated), they were also follow up with insults and threats.

I was shocked.  We are dealing with a major crisis, likely to kill 500,000 Americans before we have any kind of control over it, and people are actually threatening and insulting government officials trying to do something to help us get through this.  But beyond the insults and threats, look again at the list given against masks.  Do you see any reference to even recognizing the virus as real?  Do you see anyone relate to any personal experiences with Covid19?  Do you see anyone offering any other possible solutions?  Clearly there are those who want to make this pandemic end and they are doing what they can, and then there are those who are doing all that they can to prevent it from ending.

And this is what is referred to as being politically driven.  And this is going to kill even more people.  There is no world order out there trying to wipe out millions of the world’s population.  And while our president DID NOT create this virus, we relied on his leadership, just as we did with Roosevelt, Truman, Carter, Reagan, Bush (both), Clinton, and Obama, we needed this president to lead us through this crisis.  And yes, that same group of people who made up that list of complaints against masks, see this as an attack on the president they vehemently support.  And I get the concept of support, just not at all costs, especially if it involves lives.

I do still have faith in our scientists and doctors.  I have no reason to trust otherwise.  And it is a shame, because I honestly believe, that had the right decisions been made sooner, we could have been done with this, at least under control, in three months or less.  Now, we are entering our eighth month, and into a time period, this virus is expected to increase in cases and deaths.

I will finish with actually agreeing with one of the negative comments, to a degree.  How we get through this is personal responsibility, with the information that we have been given and recommended to do.  But as the numbers continue to climb, it is clear that not enough are exercising that personal responsibility.

And that is disappointing.

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