Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Education”

Congress – Renew CHIP – NOW!!!!

Late night television host Jimmy Kimmel returned to the airways on Monday night, following an absence last week.  He was with his infant son, who was recovering from yet another heart surgery (and has many more surgeries to go).  You may remember this situation, because many months ago, when our government was rushing to repeal the Affordable Care Act, which would have left millions uninsured, especially those with pre-existing conditions, which now Kimmel’s son’s situation would be in that grouping.

Kimmel had challenged Senator Bill Cassidy, and originally Cassidy seemed to have genuine concern and care for the millions of us in the pre-existing category.  Cassidy stated that any effort to repeal and replace the ACA, had to pass “the Kimmel test”, which Cassidy nicknamed after watching Kimmel’s television show when the host told the story about his son.  But after Cassidy wrote the bill, along with Senator Lindsey Graham, nothing even remotely represented what Cassidy claimed his fight would accomplish.  In fact, quite the opposite.  And Kimmel called him out for it.  Long story short, the repeal and replace bill failed, repeatedly.

But on Monday night, Kimmel again brought health care to the spotlight.  Again, Kimmel does not necessarily have a dog in this fight, because he can afford to care for his son.  The fact is, there are millions who cannot, 9 million in fact.  And for this, decades ago, through two other presidential administrations, a program called CHIP – Childrens Health Insurance Program – was created to make sure that children whose families who made too much money to qualify for Medicaid but could not afford health insurance, would be covered.  This program was supported by both Republicans and Democrats.  The program is especially vital to children battling such serious illnesses as cancer, heart disease, diabetes, and more.

What caught the ire of Kimmel, our current government allowed the program to expire.  Every time the program came up for renewal, it was done.  Except this time.  Now, as both sides jockey for position whether it be for health care, or tax reform, and neither side is doing anything to restore this funding.  Individual states are doing what they can, but even they are now running out of funds to keep this running.  Simply put, our government is putting the health care of our children in a hostage situation.

Kimmel’s point was clear.  He urged the millions who watch his show to make phone calls to our representatives to get them to renew CHIP NOW!!

Of course, there will be those who protest that Kimmel is out of line, or just trying to capitalize on his celebrity status as a liberal.  What these people who protest this are really upset about is that Kimmel has a venue to air this embarrassment of our government.

Seriously, my blog only reaches so many people.  But Kimmel reaches millions.  We both have small children.  We are parents just like millions across the country.  And we know how other people struggle to take care of their children.  So yes, Kimmel does have a platform, and I hope he continues to use it.

And as a heart patient myself, I have such empathy for Kimmel’s son.  I at least knew what was happening to me and being done to me.  He has a great smile, but I am sure he had to be scared.


“Aetna ‘Screw You'”

I am just going to warn you, right away, I am furious about this post.  I am typing it “raw”, in other words, I am not going to edit the content.  I want to make sure that you get as angry or upset as I am.  Because this should not be happening.

 (photo courtesy of CNN)

This is 15 year old Cara Pressman.  Since the age of 9, she has dealt with seizures (epilepsy).  While I have not personally experienced seizures, I know of a few friends who do, for a long time.  And other than being on medication to control these seizures, that was the only hope my friends had to keep them under control, but not cure.

There is a surgical option, I guess what can be described as a craniotomy, cutting open the skull to expose the brain, to perform the procedures necessary to hopefully provide relief from the seizures.  But a newer option gives even more hope, with less risk, less invasive and faster recovery.  Instead of the craniotomy, just a small hole is drilled into the skull to perform a laser ablation, which destroy the lesions on the brain that cause the seizures.  For those who suffer with these seizures, the process finally offers them quality of life, not the nightmare they face otherwise.

Sounds simple enough.  Patient and her family want the surgery.  The doctors say she is a candidate.  She has health insurance.  There was only one problem.  Her insurance carrier is Aetna, one of the biggest health insurance carriers in the country.  I have written before the statement, “insurance companies are not in business to spend money.”  But with the Epilepsy Foundation approving this method, and the FDA approving this equipment for this surgery, and the ablation surgery itself is cheaper than the older and barbaric method, sure AETNA would approve the ablation.

AETNA denied Cara the procedure.  AETNA declared the ablation procedure experimental.  There were not enough studies done on the procedure.  Forget what the doctors, the Epilepsy Foundation, and the FDA have stated… safer, precise, and cheaper.  AETNA was not convinced this was in the best interest of the patient.

It has been reported that Cara continues to have the seizures, many times a week.

This goes beyond the BIG2 of greediest contributors to unaffordable healthcare, insurance and big Pharm.  An insurance company, who has never seen the patient, overruled what the doctor, who personally knows the patient.  I do not buy for one minute that this was in the best interest of the patient as AETNA claims.  But what does not make sense, is that it does not seem that money – profit – can play a role because the ablation is cheaper.

But this situation brings us right back to the same argument.  Whether you belong to either political party or none, for us to have the best knowledge, skills, and ability to provide the best health care in the world, but to ration it, or make it only affordable to those that can pay for it, or else you suffer or die, situations like this are a travesty.  The Affordable Care Act was not perfect, and what our current government is going to do to health care is far worse.  Healthcare is a right, and should be a right for every US citizen, but it is not.  But if everyone were guaranteed healthcare as we should, situations like Cara’s would not happen.

When I was diagnosed with Hodgkin’s Lymphoma back in 1988, my insurance carrier was not going to cover my treatments if performed in the office.  They needed to be done in the hospital as an outpatient.  There was a hug psychological difference, which I believe would have been crucial for my success.  And it took my employer to improve our insurance coverage.

In 2008, my family doctor, who knows me well enough that I do not complain about ailments and aches and pains, ordered a cardiac test on a then 42 year-old, that should never have been ordered given my age.  But my complaints were serious.  She was not aware that my treatments had caused several late effects, but the most critical was a 90% blockage of the main artery to my heart caused by radiation damage.  But would it not been for her to be allowed to make the decision, regardless if the insurance company felt it was not necessary, I would be dead.

In quality of life, or in saving a life, doctors need to be doctors.  Insurance companies need to butt the Hell out, especially when under normal circumstances decisions are based on greed and profit.  This situation for Cara just makes no sense.

Cara’s response to AETNA’s denial, “SCREW YOU!”  Pretty strong for a 15 year-old.  I would not have been as restrained.  I am hoping that enough people protest the monsters at AETNA for the very ill-informed decision, and they allow Cara to get the better, safer, and less expensive procedure.

Then again, universal health care would give each and every patient access to the best health care that the US has, and without the interference of a greedy insurance company.  Cara is not alone in this position.  There are many others who suffer with these seizures.

***Cara’s story was published on CNN.COM.

Trade Places With Me

My health history is well documented on this blog (much to the chagrin of many).  I have always been open about things because I want to do what I can, to show others, a) they are not alone, b) their issues are real, and c) if possible, how to find help.  But my openness has also been about hopes, as unrealistic as they may be, of catching a break from those who felt it was their place to question my health, as if my health issues personally affected them.  This type of relationship caused much stress over my later years, as some did what they could to eliminate me from their lives by ruining mine.  And this resulted in a lot of stress.  So, I am going to try one more time, and undoubtedly I will “bang my head against a brick wall” again and again and again, because I really believe at some point, everyone will finally “get” it.

I read “double” local news, where I live, and where my children live with their mother (another state).  An all too common situation, which I have experienced as well, was reported on by the local newspaper, The Reporter.  An incident occurred at the King Of Prussia mall when a mother had taken her 7 year old son to see Santa Clause.  Yes, you guessed it, she parked in a handicap spot.

When the mother came back out to the car, a message had been written in lipstick on her window, “UR not handicap.”  Someone who had made it their business to monitor handicap spaces saw an apparently healthy woman and a child climb out of a vehicle parked in a handicap spot, and was not going to let this criminal get away with it.

Here are the facts, as reported by The Reporter, not that it was any of the intrusive and offensive bystander’s business.  The boy has a disease called Batten disease.  He is blind, and “slowly losing his motor skills.  Most children with the disease don’t live to their teen years.”  So there you have it parking lot vigilante.  Great job!  Your judgment made things right because you felt it was your business.

Chances are, nearly everyone has seen someone pull into a handicap spot and wondered, okay, what exactly is their  handicap.  First off, it is none of our business.  But it is the abuse by a few, that we feel compelled to enforce the use of the special parking spots.  We do not have that right.  And on top of that, our intrusiveness can often make a situation worse.  We do not have the authority, or the ability (skills to discover lack of an actual disability), to make someone using a handicap parking space, our business.

I know many people who go through life, “hiding” their disability as best as they can because they do not want to experience scorn, discrimination, or worse, ridicule.  Since my declaration of disability occurred back in 2010, I have experienced my share of the “dirty looks” and abusive comments.  I actually do possess a handicap placard, and it is a permanent one.  You see, my health, albeit gradual, is getting worse every day.  Here comes the argument.  “We all get older and our health goes down hill.”  An accurate statement.  But how many of you have a head start in this process?

As a long term survivor of Hodgkin’s Lymphoma, I was treated with radiation four times the life time maximum exposure of ionized radiation, and toxic chemotherapy that has caused progressive damage to many parts of my body.  Do not take my word for it.  This was the diagnosis by one of the top doctors at Memorial Sloan Kettering Cancer Center, where their survivorship clinic follows long term survivors like me.  The date on my birth certificate states that I will turn 52 soon.  In actuality, my body is more similar to that of a 75 year old.

I know, this picture does not look like a 75 year old.  And honestly, it was taken around two years ago.  But because over the years, after viewing people’s expressions when they hear even just some of the health issue I have to deal with, like even as little as one (I have 13 confirmed diagnosis of a major classification – the doctors are not dealing with the lesser issues), I developed an attitude that I need to “hide” my issues from many people, because they simply cannot handle it.

But I do have a permanent handicap placard for my car.  I do not use it often, perhaps maybe 5% of the time that I am out.  There are many factors that determine if I use it from weather, activity, and how I am feeling that day.  But you will never know, because I do not complain to anyone.  Anyone close to me has experienced moments around me, when my issues have been too much for me to handle at a particular moment.

I have learned not to react impulsively by someone ignorant enough to tell me I do not “deserve” to park in a handicap parking space.  First, I realize that the first thing that is driving the busybody is a jealousy that I might have gotten a closer space than they had to park.  I do not like using these spaces myself, but if I do use it, there is a reason.  And I will let you know very graphically if you decided to make it your business.  I am not proud of my method, but I will make sure that you think twice before confronting someone else by pure shock and guilt.

I will start by pulling open my shirt to expose the eight inch scar on my chest and tell you about the open heart surgery I had.  Follow that up with my restrictive lung disease that makes it difficult to breath in certain weather conditions.  That is just the start, because I will unleash every one of my health issues on you.  By the second issue, my lungs, I watch the person cower in shame.  I am not proud of what I have done.  But they started this.  But was it their fault?  They had no idea about my heart or my lungs?  But by the time I am done, they sure as hell know why I am parked in a particular spot, and it is because I have to, not because I want to.  Hey, anytime you want to trade positions with me so that you can park closer?  Let’s do it.

I have many friends with internal issues that qualify them as “disabled” or handicapped.  Those issues are internal!  That means you cannot see them.  Sure, there are people who will abuse the system, but those who actually need the assistance do not deserve or need the added stress from a false accusation.  It makes no difference if a person is climbing down from a monster truck, or off the ramp of a van in a wheel chair.  It is none of your business why someone is using the handicap spot.  And having experienced it first hand, you do not want to know why I have used one.  You most likely will not want to handle it.

I hope that the ignorant ass that scribble on that mother’s window in lipstick at the King Of Prussia mall feels as low as a human can feel, having to climb a ladder to kiss a snake’s behind.  The mother has enough to deal with having a child that will die as a child.  It does not matter if the child does not look the part.

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