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https://hcinsights.substack.com/p/a-real-life-story-about-medical-advocacy?r=63s806
Hello Healthcare Consumers and welcome to HEALTHCARE ADVOCACY INSIGHTS, the newsletter that tries to help “Make healthcare easier to understand and navigate.” OUR MISSION: HAI is to provide information for individuals in the role of healthcare advocate. Every patient dealing with the US healthcare system requires a healthcare advocate to assist in seeing the right things are done at the right time in the right place.
OUR GOAL: We are committed to making healthcare personal.
Today’s Newsletter is a true story of a medical emergency that happened to me, Jay Herron, co-founder of Healthcare Advocacy Insights. My experiences are eye opening and by sharing my story will hopefully open your eyes.
Hear we go with the story.
“Necessity is the mother of invention”
This is the inaugural newsletter of Healthcare Advocacy Insights. Gary Prala and myself are pivoting from our Healthcare Consumer Navigator Center website to the Substack, “advocacy@haiadvisor.com platform. We’re making this transition because of an important realization, necessity. In 2015, Leslie D. Michelson wrote, “The Patient’s Playbook, How to Save Your Life and The Lives of Those You Love (Playbook).” Fast forward to May 2025 and June 2025 when I suffered two strokes. Never before did I fully understand the literal importance of Mr. Michelson’s recommendations in the Playbook. Even though Gary and I had written about the importance of the many concepts outlined in the Playbook. It’s funny how real life can quickly change ideas in a book to actual necessity.
I’m sharing this story in the hopes others will learn from my experiences and more importantly actually do something. First, the Playbook starts by highlighting the importance of identifying someone as your “health care quarterback.” (This can be your primary care physician but doesn’t have to be.) I will be referring to this individual as your medical advocate. Second, document your family’s medical history as far back as possible. At a minimum, start with your parents, if possible, going back to grandparents is even better. Knowing the family’s medical history is critical because it’s very difficult to outrun your family’s genetics. In my case, I inherited high blood pressure and high cholesterol from my mother. If you didn’t win the genetic lottery like me and have a family history of chronic diseases or other health issues, do not ignore the facts. Third, find a primary care physician knowledgeable and experienced specifically with your medical conditions. These three concepts are foundational to successfully surviving the US medical apparatus. I’m specifically avoiding the use of the term “medical system” in the aforementioned context. Primarily because the more exposure one has to health care delivery, the more disjointed and unsystematic one learns it is.
With this groundwork, I’ll begin my story. Early one morning in May 2025 I woke up to get a drink of water and knew immediately something wasn’t right. I had severe double vision, felt nauseous and was very dizzy. I woke my wife up and we rushed off to the “Emergency Hospital” just a few blocks from our house (we’re not using the name of the facility for reasons that will become more obvious later). Lesson #1-Know exactly the services medical facilities around you offer. The diagnosis was right oculomotor nerve palsy and an acute ischemic stroke. I was rushed by ambulance to an acute care hospital specializing in stroke care.
On day 3 in the hospital, I received an MRI. On day 4, I was discharged from the hospital without any recommended next steps for my double vision. I received a generic “after visit summary along with a new regimen of prescription drugs to address my high blood pressure, high cholesterol and type 2 diabetes. On day 2, after being discharged from the hospital, I had a follow up call from a Physician’s Assistant from the Neurology practice that saw me in the hospital. I asked about treatment for the double vision and she said she would provide a referral the next day. As we would soon learn about following up, this would require additional phone calls on our part. We received an ophthalmologist’s name and followed up to make an appointment. The appointment was set for over two months later (August 8).
Without any follow-up treatments or recommendations, I made an appointment with my primary care physician to discuss the next steps I needed to take. Other than a few slight modifications to drugs I was taking, no other steps were recommended. I also made an appointment with my regular optometrist for an eye exam. He was unable to provide advice on the double vision (we would later learn if you weren’t dealing with some having “Neuro” in front of their name they weren’t the right person).
On day 17 from my hospital discharge, I had an acute ischemic stroke while working at home. Again, my wife rushed me to the emergency hospital down the street; after being lectured by the Dr we should have gone to the main hospital, an ambulance transported me to the hospital. Whether one calls this Divine Intervention, serendipitous, fortuitous, dumb luck or some other random act of good fortune, it’s the cause of this article.
During my second hospital stay, we met a hospital based physical therapist. I encountered other therapists during my first stay, this person, however, was different. As mentioned previously, I still had significant double vision and was wearing a patch on my eye to prevent nausea. As this young lady walked me up and down the hallway, we discussed my medical condition and this being my second stroke in less than a month. Little did we know how dramatically this would change the course of my treatment. Before working in the hospital’s physical therapy department, she had worked at a department called, Outpatient Therapy – Frisco Day Neuro (ironically part of the same hospital system where I was admitted as a patient). The more my wife and I talked with her, the more we became convinced this was where I needed to go after discharge. To make a long-story very short, I was tested and interviewed for the program 1 day after my discharge and started the program on day 3
The point of this story is without our self-advocating for much better post discharge care than I received after the first stroke and the lucky encounter with the hospital therapist, we aren’t convinced I would be anywhere near the level of recovery I’m currently at.
What makes this more ironical is we received a monthly newsletter called “Community Impact, News Everyone Gets,” and in the 2025 Health Care Edition, received the week I was discharged after my second stroke, was a news piece explaining how the organization I was just in “became a Comprehensive Stroke Center, which is the highest level of specialized stroke care.” “The Joint Commission states this means this location offers specialized stroke care, including advanced imaging, and neuromuscular specialists…” If my experience is the highest level of specialized stroke care, all I can say is “yikes!”
If I judged my care by my first encounter with the aforementioned organization, I would give it a grade of “F.” Without having an industry baseline of what stroke care should look like for a comparison, I’d give my second experience a “C”. My experience with the Day Neuro program, however, has been nothing short of miraculous and I would give this a grade of “A+!”
So what do I conclude from all this? When Michelson says on the cover of his book, “How to Save Your Life and the Lives of Those You Love,” this is not hyperbole, overstated, exaggeration, or misleading. The plain fact of the matter is we don’t actually know how dangerous our health apparatus is because we don’t accurately measure or report failures.
Because of this reality, it’s incumbent upon a patient to create a safety net to prevent unthinkable and avoidable errors in the delivery of care. The challenge is what does this look like and how does one create it?
The first step is finding your “Medical Advocate.”
We will discuss this in detail in our next newsletter.
Let us know what you think about our newsletter. Also, if you have a story, you would like to share with our readers, email us the details and your contact information. All communication will be confidential.
OUR EMAIL ADDRESS: advocacy@haiadvisors.com