Paul's Heart

Life As A Dad, And A Survivor

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Sepsis – A Silent Killer


Today marks the 5th anniversary of my first run-in with sepsis.  I had heard of it before, through other cancer survivors.  I remember the scary stories from them, one fellow survivor actually developing septic shock, the 4th stage of sepsis, which normally leads to death.

Before I get into the details of sepsis, here is what transpired five years ago.  I went to bed around 11pm on Sunday night, following a very busy, yet uneventful weekend of activities, including celebrating my daughter’s birthday.  I had just brushed my teeth, changed my clothing, and went to bed.

I woke up at 3am, violently vomiting, rushing for the toilet, leaving a trail of puke as I finally collapse by the toilet.  I do not really recall the moments that followed, but I do know that I ended up in my bed, again, losing consciousness.  Again, I wake up, this time screaming in immense pain, like I had never felt before ( author’s note – I have had open heart surgery, abdominal surgery, and a kidney stone – so I know levels of pain).  I would pass out again.  Another brief moment of consciousness, I would see paramedics and police in my bedroom, though not sure if I was hallucinating from the pain or whatever was happening, but one of the paramedics looked like my former brother-in-law, though I never knew him to be an EMT.  Blacked out again.  The final thing I remember just before being rolled out of my house on an ambulance stretcher, was seeing the scared expressions on both of my daughters’ faces, horrified as to what could be happening.

I am not sure what time I finally came to.

But when I finally awoke, a nurse explained to me that a doctor was coming in to talk to me.  I asked her what was going on.  She just explained that I was on high dose antibiotics and that I had pneumonia in my left lung.  As I have come to learn in my survivorship, I can read when someone is keeping information from me, and I knew the nurse was not being completely up front.  With the doctor coming in just moments later, it did not matter.

The doctor confirmed that I did indeed have pneumonia in my left lung, but they were waiting for blood cultures to come back to determine the cause.  But definitely confirmed, I was suffering from severe sepsis.  In fact, one of the main tests to confirm, my lactate level was well over 4.  Only one stage left which I was quickly approaching, septic shock, which has an 80% chance of mortality.  But the doctor was confident that there was time for me to recover.  With sepsis, survival is all about timing.

Complicating my diagnosis, are several issues that I have to deal with from my cancer survivorship.

I have no spleen which means I am more susceptible to infections and illnesses.  Developing pneumonia made no sense as I did not have a cold, no cough, no sign of anything respiratory.  But discovered during the diagnosis, the lower lobe of my left lung is “dead”, likely destroyed from 4000 grays of ionized radiation, and the chemotherapy drug, Bleomyacin.  Also, with my left lung, I have several unidentified “spots” on that left lung, which are followed up annually to see if they develop into cancer.  But none of this made any sense to me that it could lead to lead to pneumonia.

Further testing would reveal the accurate diagnosis, aspiration pneumonia.  What is aspiration pneumonia?  Aspiration is defined as “inhaling.”  So what exactly could I have inhaled?  Though the detailed answer is going to be saved for a different post, the culprit is my esophagus, which was weakened from radiation damage as well as gastrointestinal issues from my treatments decades ago.  There is a malfunction with my esophagus, called a “Venker’s Diverticulum” which traps food and liquid, which of course, normally breaks down further in the digestive process.  Unfortunately, with this DV, the remaining bacteria in my esophagus was inhaled into my lung, which turned into a raging case of sepsis.  Which explains why I never felt anything coming until it actually hit.

The truth is, most victims of sepsis have no idea that they have it, nor did I.  That is why this disease is often called a “silent killer.”  And up until recently, most emergency rooms and doctors were not in the habit of looking for sepsis.  Many times, patients faced fatality because of the lack of diagnosis, which appears to occur a lot more than once believed.

I have written about sepsis many times.  And I will keep writing about it, because it is not discussed commonly enough yet.  Too many still do not even know what it is.  And just like me, you can feel fine one minute, and hours later, be placed in an intensive care unit.  My personal doctor scolded me, as testing confirmed that I was actually septic for at least 48 hours before I had been brought into the hospital.  And with an illness that depends on a timely response for survival, I could not help but wonder, how close I actually came to dying.  Many friends and followers have written to me about their experiences with sepsis, neither of us were aware.  And this is where you, the reader, can make the difference.  Share this article.  Learn about sepsis.  Make a difference.

Pneumonia would return again nine months later, in both lungs, again, in the same manner.  No prior warnings.  For me, there is nothing I can do to prevent it from occurring due to the permanent irreversible damage.  And given my tolerance for pain and discomfort, I rely on my ability for regular follow-up appointments with my doctors.

If My Survivorship Will Mean Anything… Part 4


Please go to “Paul’s Heart” on Facebook so that you can view the actual video recordings with Bill Shirkey.  I was not able to upload them on this page.  The female voice you hear in the background is Michael’s mother who accompanied me to the interview.

Again, I want to be perfectly clear, I AM NOT SAYING NOT TO USE ADRIAMYCIN OR ANY OTHER ANTHRACYCLENE.  These posts have been about showing the need, and the benefit of technology that is available, but unfortunately not being used by EVERYONE and it should be.  It is unacceptable to hear the words “not cost effective”.  Tell that to Michael’s mother who today is recognizing the 3rd anniversary of her son’s passing.

Please, whatever form of social media you use, we, as advocates, patients, and survivors can make a difference for those who have no idea what is happening with their bodies, and for those about to face this journey.  Like the expression goes, “one person can make a difference.”

I have enough followers and readers of “Paul’s Heart” to make that difference no matter what corner of the country or area of the globe you live.

michael-2

Michael and I shared a lot in common.  Our birthdays were just one day apart.  We were both diagnosed with Hodgkin’s Lymphoma around the same age.  We both got to hear the word remission.  We both suffered heart damage from the treatments we received.  But that is where the similarities end.

On a personal note, and this is something I struggle with every day, I went through so much more in regard to chemotherapy and radiation (he never received radiation like I had).  I am here.  Michael is not.  And Michael is not the only one.  This is just a small part of the survivor guilt that I have carried with me most of my survivorship years.

Which is why I have titled this series of posts, “If My Survivorship Will Mean Anything…”

Please, I cannot stress enough the value of the information that I have researched and shared with you.  It is now up to you.  Be your own advocate.  Be the advocate for someone who is not able to speak up for themselves.  Do not take “no” for an answer to take this extra precaution when dealing with a chemotherapy or radiation treatment that knowingly has the potential for heart damage.

Michael, this is for you.

A Tribute To My Dad


My Dad Was Just Like Me

The above link is for the written and published version on “Paul’s Heart” and in Memorial Sloan Kettering Cancer Center’s annual “Visible Ink” Anthology, and the link below is for the actual live performance of my story.

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