Paul's Heart

Life As A Dad, And A Survivor

Health Care’s Worst Offense

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I want to state a couple of things before I get to my post.  I 100% support my primary care doctor, and all of the specialists taking care of all of the late side effects I deal with, from my battle with cancer.  When I reach out to them, they not only hear me, they listen to me, and they take care of me, promptly, and most importantly, correctly.  And there is one reason that my care works.  Because I do not waste their times with issues that are clearly not a medical emergency, AND, when I have a situation, I explain the issues without drama, just facts.  When they are contacted by me, or about me, they know something is definitely wrong.

Next, the nurses that I interact with, are also top notch.  They are the initial contact that I have with my doctors, and are able to determine what needs immediate intervention, and what can be delayed upon first availability of the doctors.  And many times, situations can be dealt simply with just the patient/nurse communication.

Finally, for the most part, the emergency personnel that I have dealt with in hospitals, have done well by me.  I carry enough identification on me, to alert anyone who has to deal with my issues, that I am not an “average” person, but rather there are a lot of unique circumstances about me, that have to be recognized before the first procedure is performed on me.  You will not often hear about the good things that emergency personnel do for patients, often times just the bad.

Emergency personnel have so many personal concerns to deal with about their jobs, long hours, health hazards (especially contagious issues), and even unpredictable behavior of patients.  And to make matters worse, the majority of hospitals and clinics are just simply understaffed and overworked.

But there is absolutely no excuse for me to have read a Facebook post that I read this morning.  A fellow long term survivor posted that she went to the emergency room early Wednesday morning with a high fever and shortness of breath (SOB).  This kind of post gives me flashbacks to the times that I had to deal with septic pneumonia.  In any case, her struggles got only more bizarre, as “specialists” argued about who can do what as far as diagnostics, and then arguing who would be in charge.  The post was more complicated, but just imagine if you will, I imagine it to make less sense that following Dr. Howard, Dr. Fine, and Dr. Howard.  With her past treatment history, an urgency needs to be stressed because of the possibility of congestive heart failure (CHF).  A symptom of “wheezing” seems to restrict the care to being directed to a pulmonologist, but as many of us with long term issues know, CHF can produce the wheezing and shortness of breath.  Bottom line, for those of us who have had issues related to our past cancer history, we know how to argue for our care.  And this is the frustrating part, getting medical personnel to listen to us.  If the personnel have not been taught about us, they need to learn.  And if they are not getting any kind of training post residency, they have no choice but to listen to us, but in many cases they will not.

My last trip to an ER, got the following response.  My wrist pointed to my wallet, which had all of my issues documented, most importantly, the phone number to my doctors at Memorial Sloan Kettering.  I urged the triage nurse to contact MSKCC, and within 10 minutes, my health history as a long term survivor was faxed to the emergency room doctor, and I was treated appropriately.

Three days have gone by now, and the earliest it looks like the writer of the post will see any kind of relief, as far as either talking to a specialist, or testing for CHF may not occur for another three days as it is argued who will take charge.  And the frustration is understandable, as the patient goes to the RN to argue for her care.  But the shocking thing is the response by the nurse, as if the nurse was being bothered by the woman fearing for her life.  Like I said, I know hospitals are understaffed, especially when the majority of the care is left up to the nurses to provide.  And no one appreciates that more than someone who has had his share of hospital stays in recent years.  But there is no excuse whatsoever, to not have empathy for a patient who is scared, literally afraid of dying.

I have known my share of long term survivors who have suddenly lost their lives, with unsuspecting causes, only to be revealed that a raging infection had taken place, unbeknownst to the medical staff.  I know too many long term survivors who have had “routine” procedures done (that a normally healthy person could go through), only to suddenly die from unexpected complications.  But the fact is, cancer survivors who have been exposed to the extreme toxicities of chemotherapy and radiation, we know when our bodies do not feel right.  We know when something is going wrong.  And we will do our best to help any medical person to diagnose us, and save us.

But you have to start listening to us.

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4 thoughts on “Health Care’s Worst Offense

  1. fully agreed; this post/point better be circulated broad range. Awareness and the advocacy are the keys to improve the care patients/survivors get

    • Please feel free to share this post. It is the only way to get the word out. As a survivor I can tell you that as much as I appreciate the American Cancer Society and other organizations, as survivors go, we are forgotten. And just because we have survived long enough to develope late side effects, we are pretty much on our own unless we are lucky enough to find the few doctors who know how to treat us or are at least open minded to listen.
      But we need help and awareness.

  2. Reblogged this on Life as I interpret it and commented:
    I hardly re-blog for some reason, but i could not help myself this time. the long-term effects of cancer treatment and the needs of long-term survivors, to me, are largely neglected areas. This post by Paul’s Heart nails it, which I believe is important to circulate to increase awareness on survivorship issues.

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