Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “October, 2020”

Throwing Meds At You Faster Than A 90 MPH Fastball

There was a time, that all I took was a morning vitamin.  Occasionally I would make a trip to the doctor, and if I had a cold or something, he would venture back into his lab area, and mix up a cocktail medicine for me, which fortunately was not often.  This was long before the first CVS or Walgreens was even a concept.

Then I was diagnosed with cancer, Hodgkin’s Lymphoma.  That was 1988.  Even during the time period I was treated, I only took the medicines that were necessary from my chemotherapy.  And then that was done.  I no longer took anything.  My attitude was, I had put enough medicinal crap into my body.  I would not even take an aspirin for a headache.

One of the first side effects that I had to deal with, was a result of radiation damage to my thyroid.  There are plenty of people that have thyroid issues, even without having gone through cancer treatments.  In my family, there were several members with likely thyroid problems.

The thyroid in its simplest explanation is what controls your metabolism and energy levels.  A thyroid disfunction does not automatically make you overweight.  It can also cause you to be too thin.

In any case, most times, thyroid disorders are treated with a common prescription called Synthroid (or the generic levothyroxin).  Doses vary depending on the hormone levels, but the goal is to get the person’s levels stabilized.  In other words, get your body back to working and feeling like it should.  Simple, right?

Not for a patient like me.  I fought my doctor, who had been my doctor for a long time, for three years, refusing to take it.  Of course, over that time, my levels had gotten worse.  And then, as she asked me one more time, to reconsider, I finally asked, “what will happen if I don’t?”

Left untreated, you could develop Grave’s Disease, Hashimoto’s Thyroiditis, or even cancer.  She got me.  I had not idea what the other two things were, but I knew what cancer was, and I did not want that again.

What a battle it was.

An incident happened later which solidified my attitude with caution and taking medications.  I have written about it in the past.  My first father-in-law had developed a mental condition that resulted in him being put on psychotropic drugs.  Not wanting to waste too much time on descriptions, if you have seen the movie “One Flew Over The Cuckoo’s Nest,” you can get the idea.

He had been exhibiting an unusual, and offensive behavior, something totally out of character for him.  And it was getting problematic.  We got him to the hospital, where he was being diagnosed with “dementia.”  Working in medical research, I had a problem with that, for two reasons.  One, the word “dementia” is really an umbrella type term, in other words, it is in that family of mental illness, but we just aren’t going to go further to find out which one.  The second problem I had, I had just heard a nurse taking his blood pressure, it was 60/40, way too low.  And she was instructing him to take his dose of blood pressure medicine he has been on for many years.  His blood pressure was already low.  Anyone knows, if you are not getting enough oxygen to the brain, you may not act appropriately.  There is way more to the story, but long story short, they ignored the blood pressure issue, put him on psychotropic drugs, which basically reduced him to a zombie-like state where he remained for a long time.

Then, some how, he had enough internal fortitude, enough awareness, he refused to take any more medicines, in fact, refused food.  He had enough.  I really think he wanted to die.  But then, something happened.  He went through major withdrawals, and eventually came out, as if nothing had ever happened.  The inappropriate behavior was gone.  His blood pressure had elevated.  He was back to himself.  What sucked was, I brought this up, and was ignored.  This poor man lost so much time in his life because he was not monitored and not administered his meds properly.

Over time, my doctor would also convince me that I needed to be on a medicine for my extremely high cholesterol, a condition that I inherited genetically, as well as something for blood pressure.

In 2008, as I have written many times, I had my first of two heart surgeries, courtesy of late effects from cancer treatments.

For whatever reason, two of my medications were changed.  I took one pill, it was a combination drug to treat both my cholesterol and high blood pressure.  But now, I was going to take two, the medicines split up.

Over time, I began to notice some changes.  I had warned my ex-wife that I was not feeling like myself.  I was forgetting simple things, 4-digit codes that I had used for years.  My sight was getting messed up, not seeing things that were right in front of me.  The breaking point, was at the dinner table one evening.

A simple accident at the table, my daughter spilled her glass of water.  And I freaked out as if the spillage would result in wood rot of the foundation of the house.  I immediately reacted and got up from the table, and walked out of the house to gather my thoughts.  This was not me.  Something was not right.

While I still had my wits about me, my father-in-law’s memory still fresh in mine, I sought out what could be happening with me.  What was different?  When did things change?  The medications were the only thing I could see.  Yet, nearly every doctor argued with me that it could not be.  Then I met Dr. Beatrice Golomb, from the University Of California in San Diego.

Dr. Golomb it turns out, had done a study on cognitive impacts of statin drugs.  The one drug that was switched on me, was for my cholesterol, a statin drug.  We have all heard commercials rattle off side effects of medicines, but did you know, not every one has to be reported?  Like, if the incidents were so miniscule, under a certain percentage, they did not have to be publicly reported.  That does not mean that those side effects do not exist, but clearly, unless you know they can, you will not likely get the help.

Again, I wrote earlier in full detail about this.  But I was convinced it was the higher dose that caused my issue, and quit taking it, my side effects cleared up.  It was the new prescription.  Why did my medicine get switched in the first place?  My other meds were working just fine.  I was told, “this is our protocol.”  Really?

In the movie, “Love And Drugs,” Jake Gyllenhal plays an aggressive sales rep for a pharmaceutical company, who falls in love with an ill character played by Ann Hathaway.  In this movie, I saw, and learned, just who all these people dressed so nice with their briefcases were, coming into doctor offices during my appointments, and, what they were doing.

And then it hit me.  These were the latest drugs on the market, and clearly the doctor was being encouraged to prescribe these new medications.  I was having none of that anymore.  I would eventually go back to my original prescriptions, having no problems ever since, other than my progressive issues.

So, here we are, in 2020, what a year it has been.  My main doctors are back in my home state, but I am encouraged that I need to have a cardiologist local to where I currently live, in the event anything should happen.  Makes sense right?  Wrong, not when you have trust issues.  And one way to cause those issues?

“Your cholesterol is kind of higher than we like.  I see you are on suchandsuch already.  I would like you to start taking this new medicine which shows wonderful success in compliment to statin drugs in lowering cholesterol.”

Have you ever heard the expression, “if it ain’t broke, don’t fix it”?  I got up, and walked right out.  I was not interested in taking another drug, especially to boost profits of big pharm at the possible sacrifice of my health through side effects.

There are so many things to consider when faced with having to take a prescription, especially adding medicines.  In the case of the thyroid, the medication itself can impact the absorption rate of other medicines, in other words, not allowing the other medicines to work properly.  Then, other medicines might actually cancel each other out.  And worst, sometimes the reactions can cause lethal situations.

If you are lucky, and deal with a pharmacy that has all your medications, a good pharmacist is likely to at least give you the warning, because they see your list of meds, and know the possible interactions.  But in the world of revolving door medicine, where you likely see a different doctor every visit, the attention is just not paid to the medical history of the patient, and hence, it becomes real easy just to throw the latest pill like a 90 mph fastball at a patient.

I am lucky I still have my primary care doctor after thirty years.  I know that she knows my history, and my beliefs when it comes to medicines.  I trust her.  She also knows, how to make a better case to convince me sooner that something is necessary.  Otherwise, in the words of Talking Heads’ David Byrne, “same as it ever was.”



Getting Ready For Halloween

Is it any wonder I enjoy Halloween?  As I watch everyone preparing for next Saturday, decorating their homes, some very anxious children too excited to wait to wear their costumes that they must wear them outside to play, I enjoy the memories that pop into my head.

No, not my Halloween as a child, or even pre-parenthood.  I did my share of Halloween hijinks and trick-or-treating, and watched my share of horror movies (they just don’t make them like they used to).

Nothing beats Halloween as a parent.  Sure, I looked forward to decorating the house.  I even had a Halloween tree (a long story that I don’t want to talk about).  But to me, I got so much joy out of the experience of Halloween, through the eyes of my daughters.

Our first trick-or-treat experience was quite interesting, amusing, and from the “official candy taste tester” position of Dad, frustrating and disappointing.  It was our first night out trick-or-treating that I learned something not common with a child, she did not like chocolate.  And she had no problem making that fact known, quite bluntly in fact.

“TRICK OR TREAT!”  The unsuspecting neighbor reached into their tray, and grabbed a few Kit-Kat miniatures, which the taste-tester definitely approved of, and dropped them into my daughter’s plastic pumpkin she was using to collect her Halloween bounty.

And then my daughter reached into her pumpkin, and proceeded to pull all of the pieces that were just dropped in, back out, and handed them back to the neighbor.  “I don’t eat chocolate.”  I, the official taste-tester was shocked, either between this was the first that I became aware of this fact, or that I just lost out on a tasty treat.  I looked up at my neighbor, both of us not knowing how to respond, and then my daughter said “thank you” and turned and walk away.  She did not even ask for anything else.

Another tradition I enjoyed with my daughters, was one that I had experienced as a kid, the local Halloween parade.  Unfortunately, it has been cancelled this year due to Covid, but prior to that, my daughters went to nearly every one.

Coincidental or not, the last time I would get to trick-or-treat with my daughters, produced another shocking event for the official taste-taster.  Our direct neighbor was notorious for giving out “king size” treats.  As the door opened, and “trick or treat” was called out, what did my eyes see?  A king sized Hershey bar!  Next to sharing a beer with the neighbors in the back yard, this was the best thing I could ever welcome into my home.  There was one problem, and the taste tester was not pleased.

It was one thing for one of my daughters not to like chocolate, but with my neighbor, kids were given a choice.  NO!!!  Extra large DumDum lollipops, which my older daughter picked between the two choices, and her younger sister, admiring her older sibling always, followed in suit.  NO!!!

From that point on, I was relegated to answering doors, no longer to be tempted.

So, now is a downtime as they have grown too old for the festivities of Halloween, and I wait.  I wait for the next generation of my trick-or-treaters.  Until then, I just enjoy all of the wonderful memories my daughters have given me during this time of year.

A True Scary Story Just In Time For Halloween

Halloween is one of my favorite times of year.  I have enjoyed my share of horror movies, haunted houses, and sat around many campfires telling scary stories.

I have my own scary story I would like to share with you.  Though the subject content is not the kind of fear you would experience in a slasher movie, nonetheless, the fact that the story is true, does indeed make it scary.

It was mid-March of 2012.  I was in the middle of my second campaign for our local school board.  I was also involved with my daughters elementary school parent organization and we had a huge event coming up for the weekend.  I also had a full time job that I worked an average fifty hours a week.  Most importantly, my older daughter had a birthday in March, and there was also a party for her to prepare for at the end of the weekend also.  In other words, it was going to be a long and busy week for me.  To be honest, just a shade more busy than what I normally was.  So it was no big deal.

As the weekend approached, I knew that I was not getting enough sleep, and that I was not eating enough.  I did not have enough time in the day.  But I did what I always did, just get through it.  “Eyes on the prize.”  It was all going to be worth it once we got to my daughter’s birthday party.

The week went pretty much as I had planned and scheduled.  I met all my commitments for the school board campaign.  I made it through work and some overtime hours.  Along with my committee from school, we completed all the arrangements for our huge inaugural parent fundraiser which promised to be a huge fundraiser, like no other school in the district had seen.  Birthday presents and decorations were all ready.   Friday night was spent decorating for the fundraiser.

I worked an eight hour shift Saturday.  I went home to get showered and dressed for the big fundraiser.  It was a huge success!  Cleaned up the banquet room, finished up all of our duties, the most important of which, securing all the cash that had been raised, and then we all went home, for a well-earned night’s sleep.

Of course, I had another eight hour shift to work on Sunday, finishing just before my daughter’s birthday party.  But I had made it.  The end of this grueling week was here.  I had pulled off all of my commitments.

As the birthday party ended, I was pleased.  I had done everything I needed for the week.  Now I could actually take a small breather, having only to deal with work and campaigning for the next week.  Yes, still a busy week, but not nearly as crazy as this week was.

The kids tucked away in bed, exhausted from their fun day, I got my shower and strolled off to bed.  I was exhausted.  I was definitely going to sleep great!

***this next part is based only on what I actually remember – you will see why

Around 3am, I sat straight up in my bed, and in a page from the Exorcist, I began to violently vomit.  Having enough sense to know I was in trouble, I rushed to the master bathroom to get to the toilet.  Whatever was happening, was far from over.  As I hugged the porcelain God, all I was worried about was the huge trail of mess that I made on my way to the bathroom.

It had been years, if not decades since I had been this ill.  It was at this point, that I realized I had not eaten anything at all, for at least two days, because there was no food coming up.  But whatever was happening, there was a lot of it.

All my ex-wife (at the time we were married) could do, was let me do what I was doing, and wonder how the Hell we were going to clean up the bedroom.  If only it were that simple.

After I believed that I was finally empty, an overwhelming amount of pain began.  I have been through many surgical procedures that left me in all kinds of pain, this was a pain level I had never experienced.  Ignoring what was spewed all over the floor, and onto the bed, I made my way back into the bed, curling up in a fetal position.  WHAT THE HELL WAS HAPPENING TO ME?

The last thing I remember of that moment, was telling my ex-wife, “CALL 911 NOW!!!”

And then I blacked out.  I do not know for how long.  When I would come to, I could tell that there were EMT’s from the ambulance crew, upstairs in my bedroom.  Something was wrong.  I do not recall being able to say anything or hear anything.  I remember holding up my wrist which has an emergency alert bracelet, alerting anyone of important and detailed information about my health history in my wallet, which was sitting on my dresser.

At this point, it all seemed so fuzzy and surreal to me.  I had been through some serious health emergencies before, but nothing on this level.  Honestly, I had no idea if I was even alive.

I remember being lifted onto a stretcher, and strapped in.  And here is where I think reality left me as I am pretty sure I began hallucinating.  I could swear that I saw my brother-in-law from my first marriage as one of the EMT’s, and he was just standing there, surveying my room for all the things that I had, as if to relay to my first ex-wife.  The weird thing, I never would have picked him for an EMT just because, well, just because.  But as I said, I really had no concept of what was happening, if it was real.  I could have been dreaming this all for all I knew.

Loaded onto, and strapped in on the stretcher, I was rolled out of my bedroom into the hallway and the top of the steps.  Of all things I remember, this is definitely clear, and as far as I am concerned, the worst part of this story.

As I was perched at the top of the stairs, to my right, not even tall enough to see the top of the stretcher, were my two daughters, surrounded by several police officers and my ex-wife, no idea what was happening.  But there were tears in their eyes.  Their daddy was being taken away and they could not understand why.

Was this the last my daughters were going to see me?  Was this going to be what they remembered of me?  The heart surgery was difficult enough for me to deal with having them experience.  I remember the slope of the stairway I was being led down, and then that was it.

When I awoke, I am guessing many hours later, I was in a hospital room, hooked up to IV’s and receiving some very strong antibiotics.  The nurse in the room saw me awake and went to call the doctor in.

The doctor explained to me that I had been brought to the hospital by ambulance, with pneumonia, and I was septic.  Pneumonia is bad enough, being septic is definitely way worse and potentially fatal.  The doctor believed that I was going to make a full recovery, but explained it was quite serious.

Having shaken the cobwebs loose, I let the doctor know I was confused about his diagnosis, because I did not even have a cold, or any respiratory symptoms.  I was not even having any issues with my seasonal allergies yet.  But he affirmed, I had pneumonia.  And it was made worse, because of the sepsis.

I spent several days in the hospital, receiving multiple rounds of the heavy duty IV antibiotics.  I was exhausted and totally clueless as to how I got pneumonia.  Like I said, I know I was not sick, nor did I recall that I was exposed to anyone who may have been sick.

After my release from the hospital, I got in touch with the doctor that handles my long term side effects issue from the treatments from my Hodgkin’s Lymphoma.  The explanation as to how I had pneumonia became clear.  There are different types of pneumonia, not just bacterial versus viral.  There is a type called aspiration pneumonia.  Aspiration pneumonia occurs when contents from the stomach or mouth get into the lungs.

In my case, I have a couple of issues that led to this.  One, I have an extreme amount of acid reflux from stress and damage related to radiation therapy to my gastrointestinal system.  Anyone who has reflux, knows, that reflux comes back up into the throat.  If not careful enough, it goes back down, possibly into the lungs.

An extra issue that I have, is a condition called a Zenker’s Diverticulum.

Not something you commonly hear about, the picture shows pretty much what it is.  It is basically a sack that develops on the way down the throat.  The same throat carrying food and beverages.  Which means that some of the food and liquid may get stuck in that ZD.  And as we know, food breaks down, and of course will become bacteria, normally handled by the acids in the lower digestive tract.  But not if they are stuck in the ZD.  And what happens then, bacteria develops in the ZD, and as I would breath, I would inhale that bacteria into my lungs, along with any reflux that would find its way into my lungs.

This would explain why I felt nothing prior to waking up at 3am that early Monday morning.

My doctor went further, and a bit stronger.  The numbers from the bloodwork of lactic acid, showed that I had been septic likely for 48 hours prior to when I was brought into the hospital.  How serious is that?

I was into the red when I was brought into the hospital.  My doctor scolded me for not getting to the hospital sooner.  I was dying.  I pleaded with him that I had no idea anything was wrong.  Honestly, with as busy as I was, not rested, and not eating, I clearly was not thinking either.

Nine months later, I would be diagnosed again with aspiration pneumonia, this time in both lungs.  The situation with my ZD keeps me at this risk, and I need to maintain my reflux, not something easily done.

My daughters obviously were not around when I battled my cancer.  But in their young lives, they have experienced the many issues I have to battle because of the treatments that have been used on me.  As they have gotten older, they are learning more about my health, especially from their younger years.  They do not remember the time period of my first heart surgery.  But they do remember the night I was taken out of the house on an ambulance stretcher, and the fear of not knowing what was going on.

I have done what I can to minimize my stress and manage medically what I can with my condition.  Fortunately, this has not happened again since 2012.  And honestly, I want to keep it that way.  The fact that I cannot tell if it is happening, almost cost me my life.

It does not get any scarier than that.

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