Paul's Heart

Life As A Dad, And A Survivor

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.

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“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.

Chilly Wake Up Call


As the Winter months advance, so do the colder temperatures for California, Texas, and Florida.  And with that colder weather, come the jokes at the expense of those residents of the states mentioned above.  Before I became a resident of Florida,  I could usually be heard reminding our southern citizens what cold really was, especially when it was in the teens or 20’s with wind chills making the temperature feel as if it were subzero.  So please, do not complain about temperatures in the 40’s and 50’s.

Like I said, that changed when I moved to Florida several years ago.  Over the years, my body has actually acclimated to the southern climates.  Just like our bodies adjusted between the seasons up north, the same thing happens in the south.  However, because higher temperatures make up the majority of the year, our bodies get used to temperatures being warm.

But my body has a much different issue than just getting used to the cold.

When I w0ke up and went outside, I was reminded very quickly just how much a difference the warmer climate has made a difference to me during the winter months.

Though I am happy to be here nearly 28 years later after battling Hodgkin’s Lymphoma, it has come at a price to my body from late side effects from the treatments used to save my life.  My lungs are one of those issues.  Damaged from radiation and the chemotherapy drug, Bleomyacin, I have a couple of issues that I live with, Restrictive Lung Disease (my inability to expand my lungs more than 76%, especially with my lower left lobe “dead”) and Radiation Fibrosis Syndrome.  In recent years, I have also had to deal with multiple onsets of septic pneumonia.

The more permanent and progressive issue I deal with, is extreme weather conditions.  Extreme heat, humidity, wind, and extreme cold cause what I best can describe as an “asthma”-like condition, with the exception that inhalers provide no relief.  When exposed for too long of a period to the conditions, I must return to a normal air temp and climate and simply wait out the event until the pain subsides and my normal breathing is restored.  The time varies on how quickly this happens, but if not controlled early enough, my condition advances to a full blown panic attack.

For the most part, I have a grip on this concern.  When temps get too low, I have a neck “scarf” that I wear which covers my mouth and nose, reducing the amount of direct cold air that I inhale.  Back where I used to live, co-workers would actually make fun of me for wearing the scarf in temps as high as 50 degrees, but the alternative to not wearing it helped me to let their comments fall on deaf ears.

Of course, another issue I have with the cold, is a result of open heart surgery, again, damage from long term effects from radiation and chemotherapy on my cardiac system.  My temperature tolerance dropped approximately ten degrees, and for me, that is a big deal.  I used to be a skier.  I used to wear shorts in 30 degree weather including snow.  But the other night, my body let me know, it was time to put away the flip flops and get some socks on.

Okay, so I deserve to be made fun of just a bit, when it comes to dealing with “cold” temperatures.  I also think I deserve some slack.  My current health issues were not caused by my own doing.

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