Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “September, 2017”

Helping Those Affected By Harvey/Irma/Maria

For those of us that remember Hurricane Katrina and how it destroyed areas of Louisiana with flooding and devastation, we all had hoped that our country would learn to be better prepared for these natural disasters, especially in response.  Sure, hurricanes are unpredictable, we can accept that.  But as we learned this summer, after our southern states and territories have been pounded by three major hurricanes, we were still not prepared for proper response after the Hurricane Harvey hit Texas, resources dramatically thinned as Irma crashed into Florida, and now, the US territory of Puerto Rico, residents are US citizens, are impacted by governmental red tape, as well as the impact of FEMA being inadequately staffed and insufficiently budgeted, the effects now show.

I will be honest, I do not know what the budget for FEMA actually amounts to, and if there is actually a budget for so many natural disasters a year.  But clearly, vacancies in FEMA that still exist, reductions in funding, are leaving our country unable to respond in the event of an unprecedented season of multiple national disasters.

I cannot speak for Houston.  It seems like news coverage is now focused on Puerto Rico.  I intentionally did not say “rightfully so,” because after seeing the devastating flooding, and living in the hurricane zone of Irma, southern Florida, I know we are still cleaning up and are told, cleanup could take another 4 to 6 months.  While we had some flooding, it was nothing compared to Houston.  But as the media is concentrated on Puerto Rico, they truly are on an “island in the middle of nowhere,” which makes it hard to get help and relief.  Until this morning, a shipping restriction, called the “Jones Act,” restricted any non-US ships from carrying cargo into the ports of Puerto Rico.  This was preventing the massive amounts of aid needed for those in Puerto Rico.  My own opinion, I am still baffled by some of the restrictive decisions made by FEMA restricting air traffic in and out of Puerto Rico to either evacuate US citizens, or deliver aid.

So, what can we as individuals do to help?  Well, as Pitbull, Mark Cuban, and other notables are demonstrating, they are making a difference with the resources they have.  Obviously, they can afford to send their own private planes and offer other assistance.  But you do not need a million dollars to help.

I am certain you must be aware of hurricane victims getting ice and water distributed to them after a disaster like we have gone through.  This picture is the contents of a box prepared by a contractor for FEMA, which basically will feed an individual for a day, three meals and snack.  Not too sure how good the container of milk is, but it is stated that it was prepared to be stored at room temperature.  But boxes like this, are handed out at distribution sights.

Following disasters like this, many concerned people look for ways to help.  We are always encouraged to donate to the Red Cross.  But the one drawback to me, someone who wants to make a difference now, following Katrina, there was a likelihood that anything donated for Katrina, would not go to Katrina victims, but most likely stored in a warehouse for the next disaster.  What difference should it make who it helps as long as we help, right?

Puerto Rico is in horrible shape.  They need help now.  There is no time to wait for the government to follow steps and procedures and other bureaucratic red tape.  I felt the same way when Katrina hit.  Which is what this food kit reminded me of.

Years ago, I ran a youth group, and yes, it was during the days of Hurricane Katrina.  And the kids wanted to help.  Together, we all created “shoe box kits,” which not only had some non-perishable foods and water, but also supplies such as toothbrush, toothpaste, toilet paper, even some small games like cards to distract or toys for children who might be scared.  More importantly, the kids all wrote a letter to go inside the box letting the recipient know that they were not being forgotten.  And it was hoped that the box would give them hope.

Instead of sending these boxes to the Red Cross, we sent them to a church outside of New Orleans, directly to a minister, and asked if they had any kind of drive to help the Katrina victims, to make sure that these disaster kits were given out.  And they were.  We actually heard back, not just from the minister, but some recipients as well.  I could never have been more proud of these kids for taking the initiative to help other more than a thousand miles away.

We were not as famous as Pitbull or Cuban, but all of our acts show that one person, or a group of people, can make a difference, especially when response by official organizations may be perceived to be either slow or ineffective.  You can make a difference.

Health Care Debate – Get Informed Or Shut Up

I generally stay away from political discussion on this blog, for one main reason, most conversations around politics result in nothing being accomplished except hurt feelings.  But clearly, there is one topic that is unavoidable given the purpose of my blog, healthcare.

First – State The Obvious

Forget it is CNN, often referred to as “fake news.”  And the two moderators Jake Tapper and Dana Bash do not hold anything back.  Expect the obvious and the difficult questions to be asked.

Now, the obvious.  There are four participants, none are slouches when it comes to our government.  All have knowledge of the needs of our country in regard to healthcare, that is, if they listen to their constituents.  Two reps have an agenda to undo current health care, one rep clearly wants the current system left alone for certain, hopefully to improve upon it, and the remaining rep has his own high achieving agenda, but clearly against the other two reps.

I know nothing about Klobuchar other than some interviews I have seen, and she seems to be a sincere individual.  Graham, I am split with him on certain issues.  I can give a “hell yeah!” on certain things, and then a “WTF!!” on others.  Admittedly, his position on health care is one of those “WTF!!” moments.  Cassidy, I only know of him, when he publicly proclaimed one direction for health care, and now, with his co-creator of the bill, seems to be doing exactly the opposite.  And then there is Sanders.  I know the most about him, because I have followed him, years before he was even a thought for candidacy of the presidency.  Regardless of how anyone feels about him, he will not hold back on facts or opinions.  A reason some like him, some do not.  In my opinion, I consider him to be truthful and genuine in intent.  And no, I do not agree with him on everything either.  But I do on health care.

Why Health Care Is Important To Me?

I had cancer almost 30 years ago.  I have more than a dozen issues related to the treatments that I received, two of which almost cost my life.  Without healthcare, I will die.

I remember when I was diagnosed, I had health care insurance.  And then, when I had to change employers, I was left unable to get health insurance, because back then, it was legal to discriminate due to pre-existing conditions.  I went through several years, lucky, or as some millenials call themselves, “healthy,” and then I got lucky with a new employer that enabled me to be insured again, only because it was a group policy, and as a member of a union, they had to accept me.  Eight years after that, I had life saving emergency heart surgery, and several other episodes after that.

Second – Accept The Obvious

Insurance companies are not in the money to spend money on sick people.  And knowing that more than a half million dollars have been spent on my life, just cancer-related, can you really blame greedy insurance companies for wanting to take on a liability loser like me?  My health history, along with other long term cancer survivors, my tab is only going to get higher.

But at least with the Affordable Care Act, it became illegal to discriminate for pre-existing conditions.

My Rule

I will not refer to the Affordable Care Act as “Obamacare.”  Using OC, intentionally carries with it, a political overtone which is meant to enflame those in debate.  If you did not like President Obama, then you have to hate ‘Obamacare.”  But as many have found out, with all of its faults and needs for improvement, many who did and still do not like the former president, realize they actually need the ACA.

Spinning Wheels

Since its signing, both parties have done nothing but spin their wheels.  Imagine having 4-wheel drive, and the front axle spinning in one direction, and the rear axle spinning in the other.  That is exactly what our government has done for the last eight years.  One side arguing the ACA needs improvement, and did nothing.  The other side, trying more than 50 times to reverse the ACA, and until this year, offering nothing to replace the ACA.  BOTH SIDES ARE GUILTY!!!

Be Honest

The Graham-Cassidy bill is being rushed for approval before a September 30th deadline.  This deadline is because no Democrat will vote to repeal the ACA, whether because their constituents voiced their opinion as so, or whether just towing party line.  But the Republicans have a ticking clock, allowing them to get around a normal vote requirement, having 60 votes, by currently requiring just over 50 votes.  But this clock runs out this Saturday.  And some in the Republican are uncomfortable rushing through this bill, just for the sake of taking advantage of this temporary advantage.  Statements from several supporters of the GC bill, have openly said this, “I campaigned to repeal Obamacare, and that is what I am going to do no matter what.”  You could have the most vile issues in this bill, and there are quite a few, and that does not matter to certain reps who will vote on party line, not what is best for their constituents.

A Bad Idea?

I will be honest, I do support what Sanders wants to accomplish with having everyone insured.  And yes, I will give the argument, we all use the fire department and ambulance and police.  Healthcare should not be about profit, it should be about care, saving lives.

But a good point is raised by David Gergen.  Right now, the focus needs to be, not even necessarily worrying about the Affordable Care Act, but worrying about the Graham-Cassidy bill, which is not even necessarily a GOP bill.  If too much time is spent on hearing dog whistles like “Obamacare in death spiral” or ” “markets are failing” which nobody seems to prove true or false.  But if you listen to too many dog whistles, you are going to miss what is actually important, having enough information to agree upon, that the Graham Cassidy bill should not be passed.  Sure, Medicare for all is a good idea, just not tonight.  Defending some aspects of the ACA, a good idea, just not tonight.

Where Do We Go From Here?

Watch tonight at 9pm on CNN.  For some, you will have to forget the network you are watching, and maybe forget who the moderators are.  Ultimately, you will hear from 4 of our government representatives, with at least three different ideas on healthcare.  It will be their words.  We can all watch this together, and have a civil discussion on what we heard.  Be careful, I am a very good note-taker and be able to quote quite quickly.

Because of my health issues,  I have a genuine interest in health care.  I also have a lot of knowledge about health care.  I also have a heart that everyone deserves to have health care, that is not only affordable, but available.  I do not believe that just because you give states permission to charge sick patients more is the same as leaving pre-existing conditions not discriminated.  Fact, you allow patients to be charged more because they are sick, it becomes unaffordable.  You do not get to call that leaving pre-existing conditions alone when patients are priced out of coverage, and die.

I do not want to hear spin after tonight, neither for or against.  All four individuals have the ability tonight to clearly state what everything is about.  And after tonight, demand your representative to do the right thing, not just because of the nickname on the ACA.


Understanding Epstein Barr


No, not this Epstein Barr.  This one.

I first heard about Epstein Virus over five years after I had been diagnosed with Hodgkin’s Lymphoma.  What does one have to do with the other?  Well, medicine and science are beginning to catch up to those of us in the Hodgkin’s world.  What do I mean?  Almost 30 years after I had been diagnosed with Hodgkin’s, often considered a rare form of cancer, though possessing a very strong remission rate of over 85%, a cause behind the diagnosis, still eludes the oncology world.  Unlike my father, who died from lung cancer, although in denial, knew his cancer was caused by over 50 years of smoking.  But Hodgkin’s, still unknown for sure.  I am the only member in my family to have faced Hodgkin’s.  Blood tests and scans did not diagnose my Hodgkin’s.  There are no warnings for Hodgkin’s.  Well, maybe there was.

In recent years, and perhaps spearheaded by other fellow lymphoma survivors, a common thread has been discovered among us, that medicine is finally recognizing… most of us had a history of Epstein Barr Virus.

DISCLAIMER!  What I am stating is NOT everyone who has EBV will develop lymphoma.  If that were the case, the frequency of EBV, would make Hodgkin’s one of the most common cancers among breast and lung cancers.  But Hodgkin’s is not that common.  However, the knowledge that Hodgkin’s patients may have had EBV in their past, cannot be ignored.

Symptoms Of EBV

Common signs of EBV are excessive sleepiness, fevers, headaches.  These are among some of the noticeable symptoms which could come across as anything.  But upon further examination by a doctor, body functions of the liver, spleen, and lymph nodes may raise some flags for further testing.  There is no vaccine, and is simply spread by saliva.

Over It, Or A Precursor?

EBV is actually quite common especially on younger individuals, especially youth.  Why?  Personal care.  Hand-washing not always done.  Sharing food or drinks.  And for the older youth… kissing.  And most just get over it with some TLC and other home remedies.  Your body does what it is supposed to, and build antibodies.  But others, perhaps will develop further issues, like mononucleosis (mono, a.k.a. “kissing disease).  Important note, EBV and mono are not the same diagnosis.  Mono is caused by EBV, not the other way around.  Here is where I come in.

Out Of Nowhere

I was out of high school about a year, burning the candle at both ends.  And then one day, I could not get up.  I could not wake up.  I could not sit up.  I could not stand up.  Blood tests would show that I was having some sort of liver related issue, and yes, signs pointed to mono.  I was not checked for EBV, but the mono diagnosis was pretty much a certainty.  I recovered in time, and really do not remember much of the duration.  But in November of 1988, I had no idea what this diagnosis might have just meant to me.

A Little Knowledge Should Be A Good Thing

So there are issues later on that there is an increased risk of further complications from EBV, and not just Hodgkin’s.  Again, I want to stress that a diagnosis of EBV means you will develop anything in the future, but had I been aware of the connection between EBV and HD, when I went to my doctor, with a swollen lymph node, and misdiagnosed with a “cold”, a known history of EBV and the connection, my doctor should have ordered further testing.  But Hodgkin’s is not only rare, and sometimes difficult to diagnose.  And that is where this little bit of knowledge could come in handy.  If you are known to have had EBV, and have  a medical issue that is difficult to diagnose, your doctor should consider eliminating a diagnosis of lymphoma.

But besides lymphoma cancer, there are other things to be aware of.  EBV can lead to future issues with the spleen, the liver, cardiac, breathing issues, and blood disorders, and yes, cancer.   Oddly, nasopharyngeal cancer is rare, it is common among cancers in China.  There is a proven genetic connection.

So How Do You Deal With EBV?

Besides being diagnosed properly, there is not much that can be done, except for two things.  Prevent spreading this very contagious virus.  And second, follow the doctor’s orders in regard to rest, fluids, perhaps pain meds or any other prescribed medicines.  The contagious period lasts up to two months, and recovery simply takes time.  But being aware of your body, can help you ask questions that may come up in the future, even if your doctor does not know what to look for, now you do.

Post Navigation