Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “March, 2017”

The Time To Straighten Out Health Care Is Now!

I normally do not discuss politics or religion on this blog.  But when it comes to the topic of health care, there is no avoiding bringing up politics.

First, I want to say that I am completely neutral when it comes to who gets the blame for the situation we are in today in regard to health care.

We all knew, that the Affordable Care Act was not going to be the “cure all” for what ails health care in the United States.  But from the time that it was signed into law, in spite of knowing the misgivings, failures of certain aspects (I refused to say the entire act was a failure because it was not), or dire predictions, Democrats did absolutely nothing to make the act more stable, reign in premium increases, make health care affordable, and reach even more people.  I really do not understand how Democrats, seeing that the Republican Party’s sole existence for the last seven years was to repeal the ACA, did nothing at all.  Whatever the reason, Democrats did nothing to improve on the ACA.

But what we witnessed by the Republican Party’s effort to “repeal and replace,” not only amazed us with disbelief, but shocked most with just how much would be taken away from us, not only just in the repeal phase, but what would be left with the replacement.  For seven years, the Republicans only planned to repeal.  They had NOTHING to replace it with.  And there were no intentions to replacing the ACA.  It should also be noted that Senator Marco Rubio executed a major effort against the “risk corridor”, in which would have actually protected insurance companies from losing their shirts ending up with too many sick people and not enough money brought it from the premiums.  Because of Rubio’s efforts and others, insurance companies were paid less than 15% of what they had been hoping for from the federal government.  And for the last two years, Republican candidates promised their constituents that the ACA would be repealed and replaced with something better.  And yet, there still was no replacement.  Seeing the constituents get nervous, ideas developed.  But now, in a Republican controlled House, a Republican controlled Senate, and a Republican president, the conditions were perfect for the repeal and replacement of the ACA, with the American Health Care Act.  There was one problem.  Some candidates only cared that the ACA got repealed because that is what they campaigned on.  Other candidates gave their constituents their word that they would be no worse off with the new health care proposal.  Then we saw how our government operated.  Meetings were held behind closed doors to “encourage” and “entice” representatives to vote for the AHCA, if only for party loyalty.  In fact, many were threatened that their lack of loyalty would cost them support in their upcoming elections.

Do you notice something so far?  Not one conversation about health care.  Not one word about increasing costs.  Not one word about receiving care that is needed.  No, all that seemed to matter is party loyalty and re-elections.  We, whether Democratic, Republican, or Independent citizens, now know what we are worth.

We need to understand this simple fact.  One of the major issues of the ACA is the skyrocketing insurance premiums and deductibles.  Why are so many of us shocked by this?  But the truth is, even before the ACA, insurance rates were skyrocketing.  The ACA managed to slow those rate climbs a little bit, but of course, are now back to ridiculous percentages of increases.  And the AHCA did not address this issue either.  And why?

The insurance industry cries that it loses money.  Yet, its CEO’s earn 7-8 figure salaries and bonuses.  The insurance industry lobbies nearly a quarter of a billion dollars, putting money in the pockets of our representatives, IN BOTH PARTIES – NOT JUST ONE PARTY, in order to guarantee their profitability.  And of course, the huge tax cuts giing $600 billion to the top 2%.  Imagine the millions, no, billions of dollars going into pockets of CEO’s or government representatives that could drastically reduce our rates.

Look, it is simple.  Insurance companies are not in business to spend money on claims.  Therefore, they can only make money on healthy people.  And most healthy people feel that they do not need health insurance, so, they will not purchase it.  That means, the company that does not want to spend money, must spend money.  On just my case file alone, more than $2,000,000 has been paid for all the things that had to be done to save my life from treatment of Hodgkin’s Lymphoma, to side effects caused by the treatments such as heart damage and sepsis.  Clearly I am a liability for insurance companies, but that does not mean that I do not deserve an opportunity to afford health care.  And without the ACA, I would be denied any further insurance, as well as exceeded any lifetime maximum.  Imagine, not being able to get medical care anymore, because enough money was spent on me by the age of 42.  If I died because of that, too bad, luck of the draw.

And I call bullshit on most of the companies who bailed on the marketplace.  I am sure that some bailed because of the short comings of the “risk corridor” legislation issue, but the majority bailed because the ACA cut into their profit margin.  And some may have even threatened or followed through on leaving the marketplace for political reasons (hiding behind “loss” of course), such as being denied the opportunity to merge with other insurance companies.

Big Pharmacy is another culprit with big time lobbying and CEO pay and bonuses.  And there is no reason that medicines cannot be affordable here as the same drugs are in other countries.

Hospitals.  Remember when you used to get an itemized bill?  You could actually see that you were charged $100 per day for a pillow on your hospital bed.  You could see the Tylenol pill you were given was $5.  Now, just a flat bill, no breakdown, gets sent to the insurance company.

These are the big 3 violators of increasing health costs as far as I am concerned.  Of course the insurance industry and Big Pharm were happy with the potential of the AHCA, they were not being blamed.

But just as the ACA appeared to be rushed through the process to the objections of one party, so was the AHCA to the objections of the other party.  Again, neither side of our government really giving a shit about us, the constituents, the patients.  And we, should be paying attention to who else did not approve of the new health care plan… doctors, nurses, you know, the ones in charge of saving our lives.

As long as greed is the driving factor in health care, we, the greatest nation in the world, still will not provide insurance or access for everyone to health care, while nearly all of the other industrialized nations do have universal health care.  Oh sure, Canada is the easy one to point out about dissatisfaction saying citizens are not happy with it.  But just as there are disagreements in our country over health care, I am certain, so is Canada.  Okay, unhappy with Canada as the example?  It is time to start looking at other countries who use universal health care and see what they are doing right.  I will bet they are not worried about Wall Street and greedy insurance companies.

Why am I so fired up over health care?  Because ever since the day I heard the phrase “you have cancer,” I found myself kicking myself in the ass, for letting an insurance policy lapse that my parents had in place for me as a teenager.  Like many Americans today, I was healthy.  Why would I throw money away to something I did not or would not need?  And this is why the health insurance cannot make any money, and why the government gets so much support from younger voters in support of efforts to take away essential medical benefits such as ambulatory services, emergency services, hospitalization, maternity, mental health and substance abuse, prescriptions, physical therapy, lab services, pediatric care including oral and vision, and preventative and wellness.  They are young and healthy and believe their invincibility does not concern them with health care.

I have worked nearly my entire adult life.  I have paid for my health insurance, when I had it.  You see, prior to the ACA, it was legal to discriminate against people with pre-existing conditions.  On that issue alone, I voted against every candidate who campaigned on repealing the ACA.  From the moment I was diagnosed, I was discriminated against in various forms from insurance to employment.  And having developed issues from the treatments used to cure me, I find myself with more than a dozen “pre existing” conditions.

High risk pools are not the answer either.  High risk = higher cost.  And that means not affordable.  And because you are older, higher risk.  Just look at your auto insurance.  The same thing happens there.  Higher risk drivers such as teenagers, people with prior accidents, pay higher costs.  And the same is no different for health insurance.

Eliminating policy coverage for certain issues, or making only certain coverages available in certain states without the ability to purchase insurance across state lines, makes no sense.  Nor does it make any sense to populate our states according to medical needs as one senator made a comment that perhaps “you would have to move to the state where the coverage was provided.”

But the even bigger need not being discussed, and the most important, is a long time ago, medical care was taken out of the doctor’s hands.  Pen pushers at insurance companies, who were not in the exam room, emergency room, ambulance, were the ones making decisions based on what their “manuals” dictated for their company.  Procedures and diagnostic tools would be denied for reasons such as not “age applicable” or “hunch is no reason.”  I mention these two specifically, because at the age of 42, I complained to my family physician of twenty-plus years, I had a weird chest tightness, for four months, that only occurred at the beginning of a physically stressful period, subsiding in about a minute.  Knowing me the majority of my adult life, she knew I did not complain about anything.  In fact, I hardly saw her except for a seasonal allergy shot.  But at the age of 42, and based on what she knew about my cancer past, she ordered an extreme test for someone my age(even I was not aware of what her hunch was), which resulted in me being on an operating table to save my life 36 hours later before I potentially could die from a fatal heart attack.  Had my doctor gone through al the diagnostics first, as time was clearly not on my side, I would have died.  Was the test expensive to the insurance company?  Absolutely.  But so would have been going through all the other steps, and if time had run out, I would have lost my life.  As my cardiologist said, “it was not a question if I was going to die, it was when.”

Having one story like this is bad enough.  But having been involved in the world of cancer support, I have seen plenty more “cost saving tragedies”.  Like this one, a simply ultrasound that could have detected heart damage at the beginning of treatments, knowing that damage if it occurred, could be detected right from the beginning.  But because statistically, the incidence of heart damage is less than 5%, that ultrasound is deemed not cost effective.  And then millions of dollars later, efforts used to save a man’s life are futile, and dies.

It is time to start looking at the single payer system.  Take the need for greed away from the insurance companies.  It is time to force the drug companies to sell either sell their products to us at the same low cost as other countries, or allow us to buy from those countries.  Hospitals need to be held accountable with itemization.  Doctors need to be allowed to be doctors.  A patient should be diagnosed and treated the same as our government officials who represent us.  Just because we had the unfortunate luck of being diagnosed does not mean we should be denied care.  We need to be able to see the doctors who have the experience and knowledge of our individual needs without wasting time and steps with those who do not have those things, only to end up with the right doctor, only now the situation worsened because the time wasted.  There is not one  cancer survivor that will not tell you, diagnosing and treating cancer as early as possible gives you the best chance at survival.

Of course, there will still be the war cry, “oh yeah?  Canada has universal health care, and they hate it!”  Sure, if you only talk to select people.  And I know Canadians on both sides, some hate, some say it works.  If it is that hard to accept Canada as an example, there 31 other major industrialized countries that have this kind of health care, some dating back to the 1950’s.  Surely, out of 32 countries, there has to be a success story as well as a road map how to do universal health care.  But I will tell you what they do not have in those countries, insurance companies lobbying against universal coverage.

One final fact, universal coverage is the only thing NEVER having been considered by our government, only discussed by one or two senators.  But plenty of time and action has been put into things that do not work, or will not work such as the ACA and the AHCA.

It is time for us to be the great nation that cares about its citizens, not just as a country, but as many of those who protest against health care for all, and call themselves people of faith, you need to put your money where your mouth is.  Sure, you may be young, healthy, and wealthy.  But health care is not just about for who can afford it.  And if you are foolish like I was at age 19, it could be too late.  And sure, there are plenty of other benefits besides never having to worry about seeing any doctor, being treated quickly before the situation gets too bad, prevention will be better.  Sure, there would probably be a tax to income, but the trade off is minimal compared to the sky high premiums and deductibles that otherwise would be paid.  Face it, would it not be better to pay a tax of $20-50 per paycheck as opposed to having to pay $1500 a month for insurance, and a $10,000 deductible?  Again, if you are young and healthy, you cannot afford to think “it won’t happen to me.”  I have met enough of you over the decades.

People are dying while our government fights for party loyalty and those lining their pockets.  It is time to look into making a single payer option our nation’s health care priority.

Sepsis – A Silent Killer

Today marks the 5th anniversary of my first run-in with sepsis.  I had heard of it before, through other cancer survivors.  I remember the scary stories from them, one fellow survivor actually developing septic shock, the 4th stage of sepsis, which normally leads to death.

Before I get into the details of sepsis, here is what transpired five years ago.  I went to bed around 11pm on Sunday night, following a very busy, yet uneventful weekend of activities, including celebrating my daughter’s birthday.  I had just brushed my teeth, changed my clothing, and went to bed.

I woke up at 3am, violently vomiting, rushing for the toilet, leaving a trail of puke as I finally collapse by the toilet.  I do not really recall the moments that followed, but I do know that I ended up in my bed, again, losing consciousness.  Again, I wake up, this time screaming in immense pain, like I had never felt before ( author’s note – I have had open heart surgery, abdominal surgery, and a kidney stone – so I know levels of pain).  I would pass out again.  Another brief moment of consciousness, I would see paramedics and police in my bedroom, though not sure if I was hallucinating from the pain or whatever was happening, but one of the paramedics looked like my former brother-in-law, though I never knew him to be an EMT.  Blacked out again.  The final thing I remember just before being rolled out of my house on an ambulance stretcher, was seeing the scared expressions on both of my daughters’ faces, horrified as to what could be happening.

I am not sure what time I finally came to.

But when I finally awoke, a nurse explained to me that a doctor was coming in to talk to me.  I asked her what was going on.  She just explained that I was on high dose antibiotics and that I had pneumonia in my left lung.  As I have come to learn in my survivorship, I can read when someone is keeping information from me, and I knew the nurse was not being completely up front.  With the doctor coming in just moments later, it did not matter.

The doctor confirmed that I did indeed have pneumonia in my left lung, but they were waiting for blood cultures to come back to determine the cause.  But definitely confirmed, I was suffering from severe sepsis.  In fact, one of the main tests to confirm, my lactate level was well over 4.  Only one stage left which I was quickly approaching, septic shock, which has an 80% chance of mortality.  But the doctor was confident that there was time for me to recover.  With sepsis, survival is all about timing.

Complicating my diagnosis, are several issues that I have to deal with from my cancer survivorship.

I have no spleen which means I am more susceptible to infections and illnesses.  Developing pneumonia made no sense as I did not have a cold, no cough, no sign of anything respiratory.  But discovered during the diagnosis, the lower lobe of my left lung is “dead”, likely destroyed from 4000 grays of ionized radiation, and the chemotherapy drug, Bleomyacin.  Also, with my left lung, I have several unidentified “spots” on that left lung, which are followed up annually to see if they develop into cancer.  But none of this made any sense to me that it could lead to lead to pneumonia.

Further testing would reveal the accurate diagnosis, aspiration pneumonia.  What is aspiration pneumonia?  Aspiration is defined as “inhaling.”  So what exactly could I have inhaled?  Though the detailed answer is going to be saved for a different post, the culprit is my esophagus, which was weakened from radiation damage as well as gastrointestinal issues from my treatments decades ago.  There is a malfunction with my esophagus, called a “Venker’s Diverticulum” which traps food and liquid, which of course, normally breaks down further in the digestive process.  Unfortunately, with this DV, the remaining bacteria in my esophagus was inhaled into my lung, which turned into a raging case of sepsis.  Which explains why I never felt anything coming until it actually hit.

The truth is, most victims of sepsis have no idea that they have it, nor did I.  That is why this disease is often called a “silent killer.”  And up until recently, most emergency rooms and doctors were not in the habit of looking for sepsis.  Many times, patients faced fatality because of the lack of diagnosis, which appears to occur a lot more than once believed.

I have written about sepsis many times.  And I will keep writing about it, because it is not discussed commonly enough yet.  Too many still do not even know what it is.  And just like me, you can feel fine one minute, and hours later, be placed in an intensive care unit.  My personal doctor scolded me, as testing confirmed that I was actually septic for at least 48 hours before I had been brought into the hospital.  And with an illness that depends on a timely response for survival, I could not help but wonder, how close I actually came to dying.  Many friends and followers have written to me about their experiences with sepsis, neither of us were aware.  And this is where you, the reader, can make the difference.  Share this article.  Learn about sepsis.  Make a difference.

Pneumonia would return again nine months later, in both lungs, again, in the same manner.  No prior warnings.  For me, there is nothing I can do to prevent it from occurring due to the permanent irreversible damage.  And given my tolerance for pain and discomfort, I rely on my ability for regular follow-up appointments with my doctors.

Family After Cancer – Never Give Up

March 14th is always an easy day for me to remember.  It is my late grandfather’s birthday.  Also, the birthday of my niece.  But it is also one of two important dates in my life, the first of two times I became a father.

I will not speak for other cancer patients or survivors, but for me, I had three concerns once I was diagnosed.  The first and most important, I did not want to die.  Second, I did not want to lose my hair.  And finally, I did not want to lose my ability to have children.

Speaking now as a Hodgkin’s Lymphoma survivor, back as late as the early 1990’s, mustragen was a popular component in a chemotherapy cocktail to give remission to Hodgkin’s patients.  Along with it being a deadly poison used by monsters such as Sadaam Hussein to kill his people, it was also very effective against Hodgkin’s.  Along with its toxicity, it was known to cause sterility in men.  In fact, just as I completed my 8th cycle, a study had been released stating that sterility was likely after the 6th cycle.  Dammit.  This study came out 3 months too late for me.

Hodgkin’s is a blood cancer, though considered rare, effects two groups of people more often than others, younger ages, and older ages.  Middle aged people can develop Hodgkin’s but it is more likely to be diagnosed in the other two groups.  And for the younger group, fertility is a real concern.  And for many women, the concern is even more dire, as some are often diagnosed when they are pregnant.  And just with any other cancer, decisions need to be made in the best interest of not just the patient, but the baby.

As I said, for me, pre-testing before I began my chemo, it was determined that any ability I had to get someone pregnant, was slim, most likely caused by the stress I was under, so I did not take the option of storing sperm before I began treatment.  And of course, once treatment was done, so were my chances of having a biological child.

I have written about my decisions since that discovery in past posts, and if you have any questions and do not wish to go through the archives, please feel free to ask or comment.  But the truth is, decades later, there are new opportunities to more accurately determine and often reverse sterility.

But in my case, adoption was the best option for me.  And as far as adoption was concerned, it was a matter of deciding open or closed, domestic or international.  In my case, and with my health history, international, China in particular, actually offered me the best opportunity of becoming a father.  China would not discriminate against me, as many agencies in the United States had done.

I completed all the paperwork.  I went through all the processes required by both China and the US.  And thirteen years ago, on this date, my oldest daughter was placed in my arms.  I will celebrate another anniversary for my younger daughter in a couple of months.

There is plenty of help out there to answer and guide cancer patients in all areas of care, during treatment and post treatment.  It is the hope of “Paul’s Heart”, that this blog is one of the tools that will inspire and inform that there is not only life after cancer, but a whole lot more.  Perhaps not the way we dreamed about, but it is still a good thing.

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