Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “The Heart”

Kind Kimbra


Yesterday, I was informed of the passing of a fellow long term Hodgkin’s survivor, Kimbra.  She was younger than I am, but Kimbra was actually someone that I looked up to, because she had survived Hodgkin’s a bit longer than me.  Kimbra was also a dedicated reader of “Paul’s Heart”, frequently offering comments and suggestions on the many posts that I had written over the years.

The one thing that was always, and I mean ALWAYS consistent about Kimbra, was her kindness, and her encouragement.  Whether replying to my blog, or personally, she always acknowledged any pain I may have been experiencing at a particular time, then followed it up with reminders of internal strength that had gotten me through previous issues.

And it was not just me that Kimbra was like that with her kindness.  As I passed along the information of Kimbra’s passing to various peer groups that we belonged to mutually, the outpouring of grief among kindness proves just how much someone who really was not about herself and her needs and issues, but being there for others in their times of need.  Here are just some of the ways Kimbra has been described by those who were blessed to know her:

“enjoyed communicating with her and learning from her”

“fought a good fight and her words and deeds will be define her life”

“she was a bright light”

“kind and generous”

“a beautiful person who shared her knowledge and experiences”

“a giver of knowledge and seeker of light”

If I were to describe how I knew Kimbra, I soon found out just how wrong I was after reading the many words of condolences.  It was not that she was just private, she was humble.  She always seemed to feel that others situations were worse than her own.  I remember the many conversations thinking how selfish I may have been taking up so much of her time working through a survivor issue, when in reality, her selflessness, she reached out to as many as she was possibly able.  Many other survivors have relayed stories of support that they had gotten from Kimbra.

Kimbra will indeed be missed by many, not just her fellow cancer survivors, but her loving husband and family, and the many friends and parishoners of her faith that actually got to spend so much time with her.  Too short a time on this earth, but so much she gave to all of us.

Too young.  Too soon.

 

Has It Really Come To This In The United States?


This, is a screenshot, from a news segment, explaining what is happening to one of the hardest areas hit with the Corona Virus, New York City.  It is unimaginable, in what is supposed to be the greatest and wealthiest countries in the world, that we are in a position, where patients are likely to be scored so as to prioritize who gets treated for the virus, and who does not.  In other words, deciding who lives and who will die.  Right now, paramedics are being tasked with determining in the field, if patients are revivable for cardiac events, if not, not to bother transporting them to the hospital.

Sadly, there will be a section of the country that cries out, “SEE!  THIS IS WHAT SOCIALIZED MEDICINE LOOKS LIKE!”

No.  This is what a country based on capitalism looks like.

Let me be clear.  President Trump does not get blamed for the virus itself.  In fact, even as he tries to defend himself casting blame at prior administrations for lower than needed efficiency, perhaps legitimate, the bottom line is, he has had three years to straighten out the supposed mess he claimed to have taken over.  In his daily press show on April 3, 2020, he responded to a reporter that his priority was building up the military, claiming that the shelves were empty of ammo and other equipment.  He made building up the military his priority over human health.

But that still does not explain why doctors are faced with the decision that they are today.  Why are we not better prepared for this crisis with equipment and PPE in the pipeline?  We have had several months to prepare for what President Trump claims the states should have been better prepared for.  There is one major problem with this concept.  President Trump claims he did not know about the possibility of the pandemic (which he later claims that he did), yet says the states should have prepared for it.  Only President Trump receives the intelligence briefings, which stated the coming pandemic, which he ignored.  But if he wants to claim he did not know about them, how could he expect the states to know about them?

The biggest travesty of all is this “shortage” of equipment.  While I understand certain political philosophies of certain political parties, of which I belong to none as an independent, I know there are those who support less government involvement, beginning with the federal government.  Now of course, this only applies with certain issues, but one of those issues has been declared during this emergency.  It should be up to the states to take care of themselves during this crisis.  The federal government will help if it has to.  THIS IS BULLSHIT!

Our government, in a time when they should be taking leadership, by example, has instead taken the position to let the states handle their own situations, in some sort of Hunger Games fashion, a Darwin approach where only the strongest, or wealthiest will have the best chance to survive.  States now not only bid against each other pushing the prices of equipment higher and higher, only to have the federal come in and out bid everyone else, obtaining the equipment.  Clearly, we are no longer the “united” states as each state is on its own.

So now, as “hot spots” rage out of control, the realization that hospitals will not be prepared for the surge of Covid19 patients, has led local administrations to face the most tragic of decisions, who will die, and who will get to have the equipment to save their lives.

This should not be happening in our country.  This is NOT socialized medicine.  This is fucked up planning from the top down, starting with President Trump.

Dr. Robert Truog of the Harvard Center For Bioethics, yes, ethics is in the title of his position, ethics defined as “moral principals”, has been working with other doctors, on a guideline, or as the snapshot above suggests, a point system to help doctors determine, in a shortage, who will live and die, based solely on capitalistic stupidity.

It is likely soon, if you are an otherwise healthy person, who comes into a NYC hospital, or quite possibly any other hot spot area hospital such as New Orleans, Detroit, Los Angeles, anywhere for that matter, you will be given a priority because you have the best chance of surviving the virus.

BUT…

If you are elderly, have cancer, have cardiac disease, have lung disease, diabetes, high blood pressure, or any other terminal illness, well, points on the scale are taken away which will determine your likelihood of survival, and whether or not, this type of patient should be considered for treatment.

ARE YOU FUCKING KIDDING ME?  THIS IS WHAT OUR COUNTRY HAS BECOME BECAUSE MONEY HAD TO BE SAVED SOMEWHERE, AND IT WILL COME AT THE EXPENSE OF HUMAN LIVES?

A friend and fellow long term survivor with complications of Hodgkin’s Lymphoma side effects wrote to me about our health histories in this type of crisis.  We have enough against us with the health issues we deal with, and now, to be as concerned as possible, to perhaps one day face the Corona virus.  Many of us have dealt with life and death situations and corrections.  None of us want to die.  We have not survived decades just to be taken out by either this illness or a “point system.”

The only advantage that we do have over the “healthy” population, is that we know how to prepare as best as we can for this crisis.  Under normal conditions, we have no notice when we were threatened with a major cardiac event or septic infection.  We have time to put our thoughts together, to protect ourselves, to prevent as best as we can, and then if necessary, to face Covid19 if we must.  But it should not come down to a checklist for one human to determine the value of another for their life.

This virus is not like a sinking cruise ship where every cabin will flood, drowning every passenger remaining on the ship.  The virus is not going to flood our homes or apartments like water would do a cruise ship, which is why I know that my fellow survivors are doing all we can to avoid getting Corona virus by distancing and isolating.

Some of us have expressed concern about “right to die” decisions, which will come up depending on which state your reside.  For some, including myself, if more locations adapt this elimination process, we will have to decide about our honesty about our health.  Which also would work against us.  Because those of us long term cancer survivors have health issues that are not only not common, but neither are the treatments, and medical personnel need to be aware of the special circumstances they are dealing with.  But soon, as in NYC, making awareness of this medical history is the literal pen signing our death warrant.

To be clear, I know the issues and severity of my body’s health.  I have a living directive which I expect to be honored no matter what state I am in.  I have actually been on a ventilator many times in my life for either my heart surgeries, or other diagnostics, but these have all been short term.  It is a well known fact, the longer on a ventilator, the less likely to come off.  In other words, you die.  But I have made it clear, a ventilator may be used on me, to allow a procedure to take place, but not for life support.  And if it were definitely able to be determined, if I were to contract the virus, and have no chance at recovery, I would not want the ventilator wasted on me.  THAT IS MY DECISION TO MAKE, not a doctor, and definitely not the government who created the shortage and did nothing to correct it.  And if I make that decision, just please make me as comfortable as possible, and allow me to say goodbye to my loved ones.

I am pissed off right now.  I am not being political.  I am trying not to concentrate on blame.  I am doing my best to follow the voices of the experts, and there are only two of them speaking publicly, Dr. Fauci and Dr. Birx.  Anyone else on that virus committee all have other interests of the virus over the health of individuals.  I am doing all that I can to protect myself, and to prevent making anyone else sick, especially since so many still are not.  And who can blame them, the leader of the United States, I mean, the leader of the states is not willing to set that example himself.  As with any of my other health issues, the last thing I want is to need to go to the hospital, especially right now.

The Difference Between Fear Mongering And Reality


Right up front, I must warn you, if you are the type of person who just wants to hear about unicorns and rainbows, believes only in the powers of “The Secret,” or just a simply denier that bad things never happen, you will want to skip this post.

The reality is that the world, not just our country, is facing one of its worst crisis in history.  Any attempt to minimize the severity of the Corona Virus, is pure irresponsibility.  That said, it is estimated that a fairly high number of people will contract this virus and face any number of symptoms from none to mild or moderate, and recover.  And under normal circumstances to go on carrying on about life in care-free fashion would not even raise an eye-brow.

But there is a decent percentage of the world’s population, estimated at 20%, that is known to have major issues not just surviving this virus, but suffering through it, clearly an understatement.  Without going through all the histology of the virus, real simple.  It is not the virus that kills, it is the pneumonia caused by the virus that takes the lives of those who are vulnerable or elderly.  But why?  Why does it affect this certain group of people?

First, I want to be clear, as one of this 20%, I am doing nothing that should put you at risk or inconvenience.  I have been doing my part since the warnings were finally given, actually a bit sooner because even I was aware this was going to be serious even though those with the powers that be, would rather have downplayed it.

So, I am doing my part.  I am social distanced, physically isolated for the most part.  I have taken control of my outcome as best as I can.  Now to understand why I am doing this.

In the beginning of this outbreak, we were warned who was considered vulnerable.  The elderly.  Those with cardiac issues.  People who had pulmonary issues.  Diabetics.  Anyone with high blood pressure.  And of course people with compromised immune systems.  Six boxes of vulnerability, and I check of five of them, because I do not consider being in my fifties, elderly.

In 2008, I had emergency heart surgery to bypass the major artery to my heart, damaged from radiation therapy for my Hodgkin’s Lymphoma years earlier.  I had a second surgery in 2019 to correct another vital artery, also due to radiation damage.  To this day, I know that yet a third surgery will be in my future to correct more radiation damage, to the valves of my heart.  And if that was not enough, I also have to be concerned about my carotid arteries, also affected by the cumulative and progressive damage done by the radiation.

My lungs also have issues from both radiation and chemo therapies.  The lower left lobe of my lung is described as “dead”.  My last test of lung capacity measured was at 76%.  I also have unidentified spots on my lungs that have been watched for years.  In 2012, I nearly died from aspiration pneumonia, because it turned septic.  Nine months later, I would have another round of this pneumonia.  I get the vaccine for pneumonia, actually several boosters, but those are for viral.  The pneumonia I fear and experienced was bacterial.  It was caused by damage to my trachea and  esophagus from radiation therapy.  This has taken a huge toll on my lungs.

The diabetes diagnosis is something I still have not really accepted, and feel diet related.  But, unscientific surveys among other long term survivors, show that many of us have an issue maintaining our A1C levels, the marker for diabetes.  And blood pressure?  Well for the last several years, lifestyle changes have helped me manage though occasionally there is an asshole or two, that will test my tolerance.

And as part of my diagnostics thirty years ago, my spleen was removed.  Years later, medicine would soon realize just how important the spleen was in defending the body against infection.

These are facts, there is no fear mongering.  I personally know what I am up against.  I have followed advice of the CDC, and various health networks.  I need facts to be able to get through this.  I do not need false stories, worse, false hopes.  I need to know how far this is spread, how close this has gotten to me.  I have made every sacrifice I must to avoid being afflicted, including being distanced from my children, the toughest part of this.

So, pardon me if I have zero tolerance because you feel slighted and inconvenienced and choose to follow the recommendations.  There are many like me, who began to isolate ourselves once the numbers became obvious this was going to get out of control.  It is not us that have kept the trajectory of the virus going.  It is portion of the 80% who felt this was not going to affect them, who had this feeling of invincibility, immortality.  Fifteen days to slow the spread, has now been stretched to forty-five.  Why?  Because too many just did not care.  It was those who also were the first to use the words “fear mongering.”  And they are also now the ones offering false information from inappropriately wearing face masks to hoping for Spring weather.

If you want to make this go away, do as we have been told.  Your chances of catching Covid19 or spreading it, are near zero if you follow this guideline of social distancing, stay at home, whatever you want to call it.  Incubation period is fourteen days.  There is no reason if we have all done our part, by the end of April, we should see a huge drop in cases.  That is a fact.  I just wish it was more than hope that everyone would do it.

I am not a fearmongerer.  I live in reality.  I have to.  My life depends on it.

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