Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “March, 2015”

Defending The Affordable Care Act…For The Most Part


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With the title of this post, I need to address the immediate thoughts.  This post has absolutely nothing to do with politics.  It will not be a criticism of our President by referencing the Affordable Care Act as “Obamacare” which purely is used to infer political intentions.  I do not personally care for anyone representing either of our two major political parties, especially when it comes to the issue of health care because neither has done enough, or even anything at all.

There is something inherently wrong with a country that we claim to be the greatest in the world, yet in spite of the Affordable Care Act, so many are still facing hurdles to not only get the insurance they are required to carry by law, but also get the medical attention that is needed.

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In 1973, the Health Maintenance Act was created, to attempt to reel in health care costs by controlling the caregivers you saw, needing a referral to see any kind of specialist, and to get any important testing done for diagnostic purposes and if needed, treatments.  Simply, your main doctor contracted with the insurance organization to follow the company’s practices.  In other words, take the care decisions away from the doctors seeing the patients, and instead put all the decisions in the hands of pen-pushers making decisions based on a manual without even seeing the patient.  While providing a cheaper alternative to health insurance, one has to wonder, the ultimate price that is paid when facing a critical issue such as cancer, where timing is critical and any delay by having to go through a lengthy appeal process could make the difference between cure and death.

The fact is, four decades later, we are no better off in providing the quality health care to every citizen.  Whereas a single payer system would guarantee at least access to all levels of care, instead, political parties on both sides up until a year ago did anything to go forward.  And while one side wants to take away the progress (over 50 attempts to repeal the law), the other side has not done enough to make the Affordable Care Act live up to its name.  Out of pocket costs still are out of control and often result in placing a patient between bankruptcy or death.  And prescription costs?  Do not even get me started with big Pharm’s clear abuse of power, providing the medicines we need to live.

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But while we continue to struggle to provide health coverage to everyone, our country spends too much time, ridiculing the president, the Affordable Care Act, and yet, no one is offering a better solution.  Many feel that it would be better to revert back to providing no coverage which clearly is not acceptable for a civilized country as ours, or at least we claim to be.  I have run into so many people who have had issues with the Affordable Care Act, or at least that is what they have been led to believe as the cause of their ills in pursuing care.  What does not help is health care providers, insurance carriers, and others constantly slam the Affordable Care Act, and they may do it subtly or blatant (usually the ones that are blatant clearly are exercising their political objections to the act and nothing more).

But if there is one reason, and one reason alone that the Affordable Care Act needs to be left alone, it is for the simple fact, that no one, NO ONE, can be turned away for a pre-existing condition.  This is a fact, at some point, nearly every one of us will have a health issue that is deemed a “pre-existing” condition.

In 1988, when I was first diagnosed with my Hodgkin’s Lymphoma, my employer did something extraordinary.  He wanted to make sure that I was able to get the best care to treat my cancer.  He did not need a law to do it, he wanted to do it.  As a man who appreciated and cared about his workers, he felt it was the right thing to do.  You see, my current plan, would have dictated where I could have been treated for my cancer.  So, my employer bumped up everyone’s health plan to the next tier, to take the decision making ability away from the insurance company and instead, let the doctors be the doctors.  Let the doctors determine what care I needed, and where the best care could be found.  I could go as far as to say, this just might by the main reason I get to stake my claim as a 25-year cancer survivor.

I would face a period with a new employer, where I was not insurable, due to my pre-existing cancer condition.  And then in 1997, I ended up working for a company that provided mandatory group coverage.  Of course, we had one of the best plans which was critical as I would be faced with many health issues, all tied to my days being treated for cancer.

After losing my job last year, I found myself in the position of needing the one part of the law I feel is critical, that I cannot be turned down for any pre-existing condition.  You see, today, I not only have cancer, but I have various cardiac, pulmonary, spinal, muscular, immunological, gastro-intestinal, and more issues, and without access to health care, I would die.

But whereas the ACA has now made insuring everyone possible, not everyone has been able to just yet.  And there still seems to be issues with people getting access to the care they need even if they have insurance.  Critical options are still not available to everyone and this is a major flaw in the ACA being denied the best options available when facing a terminal prognosis such as a clinical trial.

And what about those who need assistance to pay for their insurance.  A patient can find a non-profit organization to subsidize the insurance premiums, but the insurance company can have a payment policy in place that prevents the non-profit from being able to make the payment, and the patient, who has no source of income otherwise, remains without health insurance.  Technically, the patient was allowed to apply for insurance, and though payment was guaranteed through the non-profit, the method of payment was not accepted by the insurance company.

This year, those who have not been able to get insurance yet through the ACA, will now face the penalty phase.  Whether it was an active choice not to get covered, or circumstances that led to the lack of coverage, fines will now be imposed at tax-time on your returns for not having coverage.  There are all kinds of problems with this ideology.  Taking the example of the non-profit above, the patient will now be penalized because the insurance company will not accept the method of payment, which clearly is not the patient’s fault.

The fine will be either $95 or 1% of your income.  For many, not carrying the insurance which for a single payer can be as much as $700 per month, clearly it becomes worth the $95 fine or more.  The math is simple, if you make less than $9500 per year, your “fine” will be $95, but above $9500 your “fine” will be 1% of your income.  But one of the factors that is not considered, the IRS will only look at your income, not your circumstances…unemployed, spousal or child support, or any other extra financial burden.  You see, depending on the plan you select, you are still going to be restricted from the care you need.  You cannot be turned down if you go to an emergency room, but clearly, extreme methods and quality of care may just be lacking, because of the insurance issue.  And this is where the ACA fails, it does not provide everyone with the best medical care when it is needed.  But the ACA is better than having nothing because it was at least a direction of moving forward, not one of doing nothing as many of our previous government officials failed to provide.

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Bottom line, if you have a problem with the Affordable Care Act, the solution is not repealing it because it is completely wrong to take away the forward progress of the coverage of millions of uninsured, and otherwise uninsurable.  Each and every one of us should have access to the same coverage and care as each of our elected officials.  And no matter what, our doctors should be left alone to be doctors.  They are the ones in the trenches who are physically with the patient, can relate the testing results, and witness the progress of the treatments.  But for now, when it comes to health care, the main priority remains not providing the coverage and care, but protecting the profits of the insurance companies and the pharmaceutical industry.  You will not convince me any differently.

Are You Sick Of The Weather Yet?


I stopped teasing my friends and family up north with images like these about three months ago:

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This has been my first Winter away from the north, and down in the deep south.  All kidding aside, I used to enjoy the Winter.  I actually liked shoveling snow, driving on ice.  In fact, I would rather have dealt with frigid temperatures than try to find relief in the heat and humidity.

So as today, my friends and family up north are dealing with yet another major snow storm and cold temperatures.

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For many, people flock to the south to escape the winter, the cold, the snow.  Also for many, people go fly south for their health.  My mother said something quite profound to me last week after their record setting low temperatures.  “You know, I am glad you moved south.  You would never have been able to survive up here.”  Under normal circumstances, I would probably have disagreed.  I spent 48 years of my life in the northeaster United States and endured many brutal winters.  I had skied in minus degree temperatures.  As a child, I played backyard football in a t-shirt and jeans.  And I was also known for wearing shorts at least until mid January.

But that all changed for me almost seven years now.  Following my open heart surgery for badly scarred arteries due to my radiation therapy, my body’s temperature tolerance dropped at least ten degrees.  And it was noticeable because the surgery occurred in the month of April when temperatures are normally on the upswing, normally.  When I was released from the hospital, it was in the mid-50’s, which previously for me, should not have been a big deal.  But I immediately felt the difference, at it actually hurt, and I am not just talking the newly repaired breast bone from shivering.

I called the doctor how I was feeling, and was told that this happens often.  My blood was flowing properly again, actually for the first time in many years.  But soon, I recognized another weather-related issue I was having.  With my body recovering from the cardiac surgery through rehab, I soon realized that I had another issue develop, or perhaps I had it previously and was unaware of it.  In the cancer world, we refer to it as “SOB”.  And as you may see this abbreviation defining something else awfully, so too does the medical definition spelled out, “shortness of breath.”

Everyone knows the important relationship between the lungs and the heart.  Which is what often makes it difficult to diagnose many cardiac episodes from the simplest of symptoms, a cough.  But many times, the two go hand in hand.  A fluid build up in the lungs can lead to affecting the heart which will not be able to pump properly.

Once my heart issue cause was discovered, and I was officially entered into  cancer survivorship clinic at Memorial Sloan Kettering Cancer Center, I soon found out what was behind my SOB.  My cancer treatments had done more damage than thought.  A thorough pulmonary function test revealed that I had lost 25% of my lung capacity from damage from cancer treatments done nearly two decades earlier.  In fact, the entire lower left lobe is considered “dead” and has at least once been the location of a severe bout of pneumonia.  I also have several unidentified spots on my lungs that are being watched annually to see if they progress into anything further.  The damage is irreversible and as time goes on, will only get worse.

Depending on how bad my SOB gets, it can throw me into a massive panic attack, because the tightness I feel in my chest from my struggling for air, and the increase in my heart rate makes me feel like I am having a cardiac episode, which is to be expected given what I have been exposed to.

Over the years, I have discovered two things that bring on these SOB attacks, walking an incline (like steps or a ramp), and extreme weather (high heat and humidity, cold, high winds).  I now had to learn to deal with these triggers as the only relief I was able to find was within my own body.  I was never a big “stair” person, so avoiding steps was easy enough.  And since there is no cure for this, other than a lung transplant, that means that I had to find a way to manage the SOB attacks when they occurred.

During the hot an humid summer months, the solution was simple, just stay indoors with the air conditioning.  And when I did have to be outside, such as walking from the parking garage into my building at work, I would need about a half an hour inside to “settle” my lungs down with the cooler and drying air.  Inhalers provide no relief for this.  On a rare occasion, this attack could last for hours, no particular reason why, or so I thought.  I will address that soon.

During windy periods, any time of the year, I needed to place something over my face to block the wind, the force of air into my nose or mouth felt like trying to blow air into a glass bottle.  So it was not unusual, even in fifty degree weather to see me wearing a scarf across my face or even wear a turtle neck pulled up over my nose.

But the most dangerous for me was the cold, winter air.  From the simplest of tasks, walking, to the most strenuous tasks, shoveling (which a cardiac patient should not be doing in the first place), once the extreme cold hit my body, not only would my lungs seize up, so would the muscles in my body.  And it was painful.  And having pain would just domino into other effects, such as insomnia.  This was hardly what I signed up for when I asked to be cured of my cancer, and it was clearly never mentioned on my paperwork that one day I could be facing these issues.

So I lived in the northeast where it is cold, and now live in probably one of the hottest and more humid areas of the country.  And since my health issues cannot be cured or reversed, the only choice is to manage each condition.  To manage these conditions meant that I had to learn to accept them.  And until they were accepted, I would continually subject my body to unnecessary stress fighting to prove to everyone what they thought I was still capable of.  The end result, the original level of stress, and now the much increased level of stress had an impact on each condition that I was dealing with, even the SOB.

My main doctor at Memorial Sloan Kettering Cancer Center told me at our first meeting, “I can’t cure you.  I can’t reverse the things that are happening to you.  But if we can manage what has happened, and is happening, perhaps we can at least slow the process down.”  And there you have it, like many other long term cancer survivors, unknowingly, I traded one sentence for another.  Please do not get me wrong, I would not give back the 25 years I have had, but the reality is, medicine had no idea what to do with cancer patients once they lived longer than what the studies of cancer treatments provided information of side effects for.

Knowing that stress amplifies any physical malady, not just cancer, it makes sense then to start managing my health by reducing, and if possible eliminating my stress.  This meant not just emotional stress, but physical stress.  I had three trips to the emergency room because I pushed my body too hard in ability and fatigue, that my body responded hard, real hard.  When you get to a point in your life, that you no longer listen to family and friends when they tell you to “slow down,” the next person to tell you to “slow down” will be your own body.  All three ER trips could have ended much differently.

So getting back to the comment by my mother, being glad that I moved down south, how exactly have I managed with my SOB given the high heat and humidity?  Actually a lot better than I anticipated.  With my first summer behind me, and it was a learning curve (what times of day to avoid being out, learning to minimize exposure to the humidity, and definitely not pushing myself physically), my episodes of SOB while still occurring, actually lasted less in duration all because of management.  And that was made possible by reducing or eliminating the stressors that played a role in triggering those episodes.  And now, as winter winds down, and summer approaches, I am not stressing about dealing with the summer down here for the second time, because I know what I need to do to manage my health.

Oh, and for the record, yes, my body has acclimated to the southern temperatures, and though rare, we recently hit the 30’s in temperature range, and it was a brutal reminder of what I would have had to deal with up north.  Perhaps my mother was right.  That’s right mom, you can put that one on the calendar “Paul admits mother was right.”

What Is “Paul’s Heart” About?


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While I have always had an interest in writing, it has only been in recent years that I have really tried to direct that energy.  With the help of a volunteer peer writing program through Memorial Sloan Kettering, and with the help of a personal writing coach, my commitment to giving back or paying forward has reached world-wide opportunities.  I am approaching 20,000 views on this page alone, not including the “Paul’s Heart” Facebook page.  I have informed my writing coach that I still want to pursue writing a book based on “Paul’s Heart.”  So far, I have had 4 contributions to a book called “Visible Ink” (much like a “Chicken Soup for The Soul” books) written entirely by cancer patients and survivors.  I have been published in the MSKCC newsletter “Bridges” dealing with issues such as cancer survivor guilt and when is the right time to seek counseling to deal with cancer issues.  And I have given so many speeches about cancer and survival.  One of my biggest accomplishments so far is about to happen, and I will go more into detail in the coming weeks.  Believe me, it is very hard to keep this one secret because I am very proud of this project.

So as I begin the next quarter of my life, I want “Paul’s Heart” to grow even more, and reach more people.  “Paul’s Heart” covers a lot of topics with the main concentration on cancer and single parenting, but also so much more.

adoption

I have two daughters that I adopted from China.  I am a strong advocate for adoption, both domestic and internationally.  When I write about adoption issues, it is more than just about the process, but also issues related to “growing up” adopted, legislation, and how to come to the decision to adopt.

pets

I love animals.  I love taking care of them.  I love playing with everyone else’s pets.  I have owned pets my entire life with the exception of the past two years, as even now, I still struggle with the grief of the loss of my beloved Golden Retriever Pollo.  I often share fun stories of the pets I have had, or happen to see, as well as discussions about Puppy Mills, animal welfare and care, and of course, dealing with loss.

bullying

Having been a bully victim myself all through elementary and middle school, this is a topic that I take very seriously.  As a parent I joined a pilot effort aimed at preventing bullying in the schools.  I will share legislative efforts as well as other storied pertaining to bullying, and not just from the one being bullied, but also from the perspective of the bully as well (note – I have no experience in that role, other than what I have learned).

cancer

Cancer is what began “Paul’s Heart”.  I cover all topics from diagnosis to survival, physical and emotional needs, effects on family and friends, employment, discrimination, money, reproduction, side effects and more.  Cancer has devastated my family from not only my own diagnosis, but the loss of my father, sister, two grandmothers, and a grandfather.  But one thing I want to stress, I am not a doctor, so you will never see medical advice being offered.  I have been counseling cancer patients for 25 years and not once have I ever given medical advice.  I believe in the power of information, and the more information you can have at your fingertips, the better.

education

I have always been interested in education, and having two small children in school only made my commitment to education even stronger.  So much so, that I spent four years pursuing a position on our local school board where I learned so much more about the education process.

family and friends

This topic is pretty much self explanatory and can pretty much cross over to the other topics I cover.

food

I do not write often about food except to maybe occasionally mock myself for my finicky habits.  And given my many health issues you would think I would pay a little more attention to detail of healthy eating.  So just as my efforts on improving my eating habits continue, so do my efforts in publishing posts on this topic as well.

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Cardiac advocacy is something else I am very strong about.  While my cardiac issues are related to my cancer history, how to deal with cardiac issues does not discriminate why.  Again, I am not a doctor so I will not give any medical advice but I will give you as much information or at least guide you to where to find other information.

inspire

“Paul’s Heart” is about inspiration.  I like to share not only my experiences, but those of others who have faced such difficult times.  I do not want to mislead you with a panacea.  Many of the issues I write about on “Paul’s Heart” are quite serious, so many may come across as not being very positive, and I do not attempt to cover those up.  Last year, I shared the story of Stephanie and her extraordinary battle with Hodgkin’s Lymphoma.  I cannot wait to give you her current update of just how far she has come.  That will hopefully come very soon.  I also shared Jeff’s story and his efforts to give back and pay forward in his cancer battle.  In a bitter irony, Jeff has since relapsed.  And then there was Michael, a young man who beat cancer, just to succumb to the side effect of one of the drugs to treat him.

But there are other stories that I plan to share with you, not just about cancer.  There will be stories about all the topics that I write about from adoption to animals to family.  As a follower, you are always welcome to share “Paul’s Heart” posts if you feel it will benefit someone, but you may also submit your own story.  “Paul’s Heart” is meant to reach many, with information to inspire and guide.

politics

There are two subjects that I generally stay away from, religion and politics.  It is not because I do not believe in religion, quite the contrary, I have a very strong faith, and it is mine.  And I do not believe it is my responsibility to cram my religion down the throat of anyone else, nor do I want it crammed down my throat.  Bottom line, I respect everyone’s right to have religion, or to not have it.

Politics…well, I do not like politics in general.  But if come across a legislative issue or effort that potentially has an impact on the subjects that I write about, then I will share them with you.

recreation

I like to have fun.  I love watching others have fun.  And because I cover a lot of intense topics, every now and then I will throw in a lighter story dealing with just fun.

side effects

This topic is one that I spend a lot of time covering because late side effects from my treatments have led to nearly all of the medical issues I deal with my health today.  But I am also concerned with side effects from prescription drugs, and the lack of any firm protocol to follow up certain drugs known to have a critical impact on particular organs of the body such as the heart.  Again, no medical advice, just information given.

divorce

I am in the middle of my second divorce.  I will never mention either ex-wife by name, nor as a rule will I discuss most events, decisions, rulings about my particular divorces.  And this is for the protection of my children as well as myself.  When I write about issues concerning divorce, stories for the most part will come from other examples unless I specifically state otherwise, and any similarity to my divorces is purely coincidental.

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The final thing you will see me share, are my single parenting thoughts and experiences.  I will not write from the single parent perspective of a parent that was a single parent from the beginning, but rather, as the children who came into the world with both parents, now having to share time, visits between both of their parents, or have sadly had to deal with the death of a parent.

So that is what “Paul’s Heart” is about.  As always, if you would like to contribute to “Paul’s Heart” with either a topic or question, please feel free to do so by writing me at pedelmanjr@yahoo.com and put “Paul’s Heart” in the subject.  Like I said, “Paul’s Heart” is about reaching out to as many in need as it can.  For someone like me who struggles with “survivor guilt”, this is one of the reasons I believe that I have survived all these years, in spite of all the health issues I have dealt with.  I want to make a difference.  I want to inspire.

 

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