Dozens of Doctors and Nurses Repeated this Secret Advice to Me—Word for Word

Dozens of Doctors and Nurses Repeated this Secret Advice to Me—Word for Word

I survived cardiac arrest in January 2018. Full disclosure: I survived a health insurance denial in January 2018.

I’ve previously shared how I had cardiac arrest after my usual run one January. I wasn’t breathing for 11 minutes, and that’s just the first time around. I’ve been asked about my lifestyle numerous times by doctors and nurses.

Did I smoke? No.

Take drugs? No.

Have high blood pressure? No.

Drink alcohol? No.

Eat healthy? Yes.

Exercise? Yes, I’m a runner.

They said it’s shocking that I had cardiac arrest.

What led up to that day is equally shocking. What happened after is beyond words.

Across America, more people have become aware how health insurance companies routinely deny coverage for their policy holders. These aren’t rare instances, it’s part of their system to put profit over patients.

Important note: policy holders are also patients.

Here’s the advice

“I don’t believe in lying, but the healthcare system is corrupt. The next time you have a concern about your heart, don’t wait for an authorization from your health insurance company. You will die waiting.

Instead, when you have a free day, go to the best Emergency Department near you. Walk in and say, ‘I’ve had pressure in my chest for two weeks, and it’s severe. Now, that pain is radiating in my jaw and down my left arm.’

You will get the medical attention you need and deserve.”

So health insurance companies are denying—sometimes lifesaving—care to patients. On top of fighting sickness and disease, patients have to battle their health insurance companies. These are the companies that claim to be your partner in health.

If this didn’t happen to me, I wouldn’t believe it. One of my doctors ordered a test. To be clear, this was after I survived cardiac arrest. I already had over three years of documented medical conditions, such as anoxic brain injury, cognitive impairment, movement disorders, communication disorders and other neurological disorders. My health insurance company paid for most of these claims after a fight, so it was aware of the magnitude of my health conditions.

After my doctor ordered the test, I received a denial letter from my health insurance company. The denial letter started with, “…because you do not have any serious health conditions…” Really? I called a rep assigned to me at the health insurance company. To say I was angry is an understatement. I asked if cardiac arrest didn’t qualify as a “serious health condition,” what did, decapitation?

Doctors and nurses in different hospital systems and practices gave me the same advice. Each person was sure to share it when no other people were in the room—just me and the provider.

Here’s the advice: “I don’t believe in lying, but the healthcare system is corrupt. The next time you have a concern about your heart, don’t wait for an authorization from your health insurance company. You will die waiting. Instead, when you have a free day, go to the best Emergency Department near you. Walk in and say, ‘I’ve had pressure in my chest for two weeks, and it’s severe. Now, that pain is radiating in my jaw and down my left arm.’ You will get the medical attention you need and deserve.”

Is that what it takes to get medical care?

It’s conservative to say I’ve heard that advice dozens and dozens of times with little variation.

I know how health insurance companies operate. You know it. Doctors know it. Doctors have their workloads multiplied because they have to justify every test they order and every pill they prescribe. Patients are the ones who suffer delayed healthcare, which results in poor healthcare, because of it.

I was taken by ambulance to the emergency department cath lab (cardiac catheterization laboratory) the day I had cardiac arrest. So I appreciate people going to urgent care for a sprained ankle rather than clogging up the emergency department. Every second counts when your heart just stopped. Yet, our current healthcare system leaves many people with little choice but to go to the emergency department and do their best acting job when they need care.

To be transparent, I had to work through quite a bit of anger in my own health journey. Anger isn’t healthy, and it doesn’t help anyone. Anger alone doesn’t bring change.
If you have a serious health concern, my suggestion is to do whatever you need to do so you can live. I also suggest you fight back. It is not impossible to win against your health insurance company. That’s what they want you to believe. Your health insurance company is hoping to wear you out. Don’t let that happen. Your life may depend on it.

Health Issues aren’t My Identity. They are My Reality.

Health Issues aren’t My Identity. They are My Reality.

It can be challenging to live what people consider a normal life when you get reminders every day, throughout the day, that you live with numerous health conditions.

We all know that person. The one you avoid asking, “How are you,” because you know the response will be a long answer about their latest blood work, a recent knee injury, frustration over not being able to do what they want, struggling to wake up, and being prescribed a new medication.

No one wants to be around that person. For emotionally healthy people, no one wants to be that person either. After cardiac arrest, I found out first hand how easy it is to become that person. As someone who has seen over 45 doctors and medical providers in just over eight years, I can say from experience—it’s hard to escape.

I read an insightful article in Psychology Today, 4 Illness Identity States and How to Work With Them, by Katie Willard Virant MSW, JD, LCSW. It shows how chronic illness can affect one’s identity and self perception. They are: Rejection, Engulfment, Acceptance, and Enrichment.

Ultimately, enrichment is the ideal identity state to have. You’ve seen war veterans or professional athletes who have experienced a tragic accident. Many of them, after much hard work, use that illness to inspire others to greatness. None of us can imagine what it took for them to overcome the impossible, only to turn around and encourage others with less tragic lives, for the most part.

I’m thankful to have doctors who are passionate about their work, and deliver genuine care to me because of that. I shared that article with one of my doctors who further explained that people with chronic illness have a primary illness identity state, but we also move from one to the other based on circumstances, changing health status, and even our mood.

I have numerous health conditions that have various symptoms, so I get reminded of them every day. As a fellow cardiac arrest survivor and friend put it, the moment you survived cardiac arrest was as if someone handed you luggage you didn’t ask for. You have to carry it around with you the rest of your life, every day, all day. No one can carry it for you, and you can’t skip a day.

Many of my doctors find it amazing that despite not breathing for 11 minutes, I can still drive and I can feed myself. Do I sometimes drop my fork? Frequently. Do I sometimes knock over my glass instead of picking it up? Too often. Do I stub my toes or crack my elbows from running into walls or furniture in my own house? More times than I can count. Those are friendly reminders of my health.

Everyone stubs a toe occasionally, or bumps into furniture. I have balance and coordination issues, movement disorders and dizziness. Cracking my elbow through a doorway in my own home hasn’t happened just a few times. It’s a matter of how often. I’ve gone for several rounds of neurological and occupational therapy, and it’s helped me to function better. I’m grateful for it.

Each doctor, therapist or provider tells me up front they want to set expectations. That means therapy will almost definitely help me improve from my current state. It also means I must acknowledge that I will never be back to what I was before a brain injury. So each doctor and therapist are very hopeful, and also realistic.

Practically speaking, that means potentially I may spill things less often, trip less often, and remember to get a fork instead of a spoon to eat eggs at breakfast. That also means I still do those things. I can’t avoid them.

Managing chronic health conditions can feel like a part time job. It’s not just the symptoms. Any given day might include: scheduling follow up doctor appointments; rescheduling appointments that were cancelled by the doctor; ordering medications on schedule so I don’t run out; battling, when necessary, my health insurance company to pay for prescribed medications, getting tests and going to therapies ordered by specialists; doing therapy exercises at home consistently; and refilling medication pill boxes, trying not to be confused why a pill that was always rectangular and yellow is now white and round.

Do I want to talk about these issues with every acquaintance I see in public? No. People love and care about me, and I find that humbling. So people do ask me how I’m doing, and their concern is sincere. How do I answer that? I’m fine? I’m not. I spilled coffee on myself today and I hurt my knee again. Nobody wants to hear that, and I got tired of hearing myself say it.

Anyone living with neurological disorders or other chronic conditions doesn’t want to dwell on those things. We want to live life just like others do. In fact, not being able to live life just like others do is part of the frustration, discouragement and struggle of carrying that luggage I didn’t ask for. I don’t wake up thinking about my symptoms. I just get reminded of them within the first 15 minutes of my day.

Has illness ever been my identity? I’d like to think not, but those around me could answer objectively. At the least, I’ve jumped in the water of illness engulfment—not for desire, pity or enjoyment, but because it’s hard to escape.

Is illness my identity? No. Is it my reality? Yes.

I’ve chosen to make a deliberate, frequent evaluation of my identity when it comes to chronic illness. That choice is because I felt engulfed too many times. These days, when someone asks how I’m doing, my response depends on the relationship. To some people, my response is, “I’m fine.” To others, “It’s rough, but I’m taking steps forward. Thanks for asking.”

Ordinary Run. Life-Altering Course.

Ordinary Run. Life-Altering Course.

Author’s Note: I write this having suffered an anoxic brain injury. Cardiac arrest stopped my breathing for 11 minutes, and another four times on the way to the hospital. Years ago, this was called brain damage, but now the softer sounding phrase is brain injury.

The weather was unseasonably warm on January 11, 2018. My wife, Lisa, was taking down Christmas lights outside of the house. I was going for a quick run, just four miles. I would be flying to New York the next day to join my client for his most important trade event of the year.

I went for my run, and as had been happening recently, I kept having to stop to catch my breath. Any runners reading this knows how very frustrating that can be. Running wasn’t something I just started. Several years earlier I started walking, and then running short distances. When I ran a mile, I discovered I loved running.

That led me to run several 5Ks, 10Ks, two half-marathons and one full marathon. To be very clear, I was never fast, and my marathon time was terrible. As some say, I’m not fast, not last. Other runners remind me that regardless of the time, just completing a marathon means I can call myself a marathoner. The spring after my one and only marathon, I decided to start marathon training again to redeem myself. I had only been running short distances for a few months after the marathon to let my body recover. Most runs were four to five miles, and sometimes on a weekend I’d run seven or eight miles. Still, I’d need to walk for a minute off and on to catch my breath.

Most serious runners who are struggling evaluate everything they can to improve. That includes diet, sleep, running form, shoes, weather, and a long list of other things that might be the cause of poor runs. My primary doctor recently retired, and I found it surprisingly difficult to find another doctor who could see me in the next month. Any doctor who was accepting new patients had a wait list of six to nine months.

I went to an urgent care, and the doctor who owned it agreed to become my primary doctor. At the urgent care visit I requested an asthma inhaler. I had been diagnosed—or misdiagnosed—years earlier with exercised-induced asthma. My new doctor prescribed the inhaler but required me to come back in two weeks for further evaluation. The inhaler didn’t help at all. So I had an ECG, echocardiogram, and pulmonary function test. Everything appeared fine. I was told I had the lungs of a competitive swimmer. I shouldn’t be short of breath, but I was.

My doctor, still new to me, said he could not rule out my heart as the cause of my shortness of breath, so he ordered an exercise stress test. It was September 2017. I was somewhat surprised, since I was continuing to run, even though poorly. I didn’t realize someone with a serious heart condition would be able to run, but I’m not medically trained.

I received a letter from the facility that was to perform the stress test. It included information such as what to wear, what to expect, and the duration of the test. A few days prior to the stress test, I received a letter from my health insurance company, which stated, in part:

“Based on the review of the information provided to us, the service referenced above is not medically necessary.

Our physician consultant concluded the following: We cannot approve this request. Your doctor told us that you have trouble breathing. Your doctor ordered a special heart test. This test measures blood flow to the heart. This test should be used if your doctor is looking for a condition causing blood vessels in the heart to become narrowed or blocked and you are at moderate or high risk for heart disease. For this reason, this test is not medically necessary for you.”

It’s come to light in recent years the depth of corruption behind these denial form letters. Was my health insurance company putting profit over patients? Or was my new doctor, though highly respected, ordering a test unnecessarily? Back then, I didn’t know who to believe. I do now.

There is a detailed and complex process to get a denied test approved. Let me be clear. If my doctor, an MD, couldn’t convince a heath insurance company to pay for a test, it’s pointless to think I could call a customer service number and demand a test. On what grounds? That I want one? They already had orders from a medical doctor, so any action I’d take would be a waste of time.

I called my doctor’s office and asked them to send more information to the health insurance company. I made a series of calls and sent messages in the doctor’s patient portal. My doctor’s office responded and took action. It wouldn’t matter anyway. The health insurance company had closed this request.

My doctor tried another route and insisted I needed a stress test. He referred me to a well-respected local cardiologist. When that cardiologist’s office called me to schedule an appointment, they asked about my stress test results. I explained that I hadn’t had one yet. They shared that there was no point in meeting with the cardiologist without a stress test, otherwise, it’s a useless appointment—just a meet and greet. They told me to schedule an appointment once I had a stress test.

So, on January 11, 2018, I went for my run, frustrated that I kept having to walk to catch my breath. I’d learn after the fact that I was having a heart attack during that run. I had no chest pain, and no indication that I should be concerned. It was no different than the previous 100 runs. If you told me I was having a heart attack, I wouldn’t have believed it. I felt fine.

Once my run was over, I reached my street and started to walk home for my cool down. Running pumps a lot of blood up to your brain, and once I started walking, much less blood was making its way to my heart and brain. I felt very dizzy all of a sudden. I considered lying down on my neighbor’s grass, but was wet, and I didn’t want to get muddy. Besides, if you want to improve, you need to push yourself, right? If I did so, I would have died there.

When I walked in my back door, Lisa was in the kitchen. She asked about my run, and I was annoyed that it was bad. I told her I thought I had low blood sugar, and that I was going to make a smoothie before I took a shower.

I put quite a few ingredients in my smoothies. I don’t remember why but that day I decided to cut fresh fruit instead of using frozen fruit. I had no idea that in less than 10 minutes, I wouldn’t be breathing. Fresh fruit and so many other things would no longer matter.

My wife went to the basement, and I went upstairs to take a shower. By this point, the dizziness increased, and I cut my shower short—not something you want to do after a run. I had to hold on to the shower bar, then the vanity counter, just to make my way to the bedroom floor where I lay down. I called my wife and told her I thought I might need to go to the hospital. We had been married 29 years, and neither of us ever said that to the other. Plus, we just had a short conversation 10 minutes earlier, so it was understandably odd to her.

Lisa ran upstairs and asked if I wanted her to call an ambulance. I said no, but I had no strength to stand up either. Instead, I asked her to get me a pair of shorts. I was only wearing underwear. It’s ridiculous to think now that I was inches from death’s door, yet when she handed me a pair shorts, I said, “No, not those shorts.” In a minute, that wouldn’t matter. We talked for 10 more seconds, and I turned blue.

Of course, this next part was told to me. I wasn’t conscious for it.

My wife called 911. She was previously trained in CPR because she worked at a school. They tried to guide her in chest compressions. She did them, but was hysterical at the same time.

The 911 operator told my wife she needed to leave me to open our front door. She didn’t have a choice. She ran downstairs, opened it and turned on the front lights as instructed. A police officer arrived first. He gave me chest compressions with the goal of Return of Spontaneous Circulation (ROSC). That’s when a victim’s pulse returns and they are breathing on their own. I still wasn’t breathing.

When paramedics arrived, they used a LUCAS (Lund University Cardiopulmonary Assist System) device. It gives perfectly timed chest compressions to someone in cardiac arrest. Despite those efforts, still, no spontaneous breathing.

As a last ditch effort, paramedics used a small drill to inject a large dose of epinephrine below my knee cap. The outcome is either the restarting of the heart or death. After 11 minutes without oxygen, I’m glad to say it restarted my heart.

While enroute to the hospital in the ambulance, I stopped breathing four more times. Who knows for how long, but it’s safe to say, it’s not good for your brain.

As of this writing, only 9% of people survive Out of Hospital Cardiac Arrest, or OHCA. I was fortunate to survive, especially after so long with no oxygen.

I would soon find out that I was a living miracle, but that miracles can have aftermath.