Quick recap: I almost died, and United is poorly run and focused only on earnings and not patients. Done — let’s move forward.

So how did I get in that hospital bed? Who was to blame? Well, let’s start with this one fun fact — even though there are many people to blame for many things in your life, the first person who needs to be blamed in every scenario is you. Personal accountability (an obligation or willingness to accept responsibility or to account for one's actions) is the focus of Patients First. We all need to take responsibility (able to answer for one's conduct and obligations) for ourselves before we can demand it from the other stakeholders in healthcare. 

So, I’m an idiot — I caused this whole thing. How? 

First, I had a pulmonary embolism nine years ago, and I haven’t taken care of myself since then to prevent future issues. Again, there are a hundred reasons why I did not do this correctly, but it all begins with the fact that I didn’t do what was right, I didn’t do what was common sense, and in a way, I trusted people I should not have trusted more than myself.

Second, the national thought leader physician I worked with from Emory Healthcare told me that it was a ‘freak occurrence’ and that my test results showed that there weren’t any genetic predispositions that would concern him. He told me that 15-20% of all people in the US probably had a clot of some sort, just from bad habits — sitting at a desk or being in a car or plane too long, a kink occurs as it does in a hose. The result is clotting in the leg or lungs, most times not creating too much stress on the body, so people don’t even realize they have it. 

For me, this meant that I was taken off of blood thinners and could go back to ‘living a normal life.’ I was told specifically that there were no food restrictions or diet-specific considerations to make. At the time, it sounded stupid, and it didn’t make sense that I could almost die from blood clots and the best option moving forward was changing nothing. Again, I should have discussed it more, researched it more, or just done what I knew in my gut was the right thing to do, but I didn’t.

Why? My marriage blew up, my business blew up, and my life was 100% focused on saving my kids and ensuring their lives were not ill-affected by these things. I ate horribly, I hardly worked out, I lived under constant stress, and I was not able to remove myself from these situations.

Third, this process was never-ending — I was caught in legal battles for nearly four years. Around the three-year mark, my body started acting out. I had my first gout flare–up and had no idea what it was or why. The doctors at Wellstar Health System treated that first occurrence and then the several to follow over the next two years, with the feedback that a few pills would solve the problem when it flared up. I was never engaged in a chronic illness discussion, preventing the issue from happening again. These episodes became more consistent, happening once every nine months to every six months, as my body became more and more toxic. 

I finally had Kaiser coverage a year or so later and was trying to get care, but COVID happened, and I couldn’t get into the Kaiser doctors' offices. I was told that I wasn’t allowed in the office without wearing a mask, which I wouldn’t do due to my former issues with PE and my lung capacity struggling at the time. When I was barred from entering the office by the power-hungry front desk woman, the office manager came out to talk with me. This was May 2021 — all of the ‘mandates’ had fallen off nationally, but some businesses like Kaiser felt like they could deny care due to their own ‘policies.’ which were scheduled to end the next month in June 2021. So the office manager told me that these are the ‘policies’ and that he disagrees with them and thinks that they are useless and stupid, but that he cannot allow me in the office. Mind you, I’m on crutches because my ankle is locked up, and I could not stand on it due to pain.

So I was refused care by Kaiser, even though I was paying hundreds of dollars per month for coverage. I was not allowed to use it. So I go to the Urgent Care, like I had to during 2020 with COVID in full panic mode, and my body was just stuffed full of Prednisone, Colchicine, and painkillers each instance. 

FINALLY, I am allowed to see a doctor at Kaiser in July 2023, right after returning from the 4th of July weekend. My body was so destroyed I could not even walk — I was literally on crutches coming into the building. The doctor spent no time engaged with me. It felt like he had disdain for me as I told him my story. The only thing he did differently was put me on Allopurinol and give me access to 2-3 videos on diet — the first time in four years that diet was mentioned to me by any of the doctors or nurses I had seen for these issues.

I started the treatment in July and was told it would take 3-4 months for me to titrate up to the appropriate level of Allopurinol before we could ‘see the benefit.’  Well, I went from 260 to 305 lbs in 3+ months. When I called a doctor friend of mine for a work issue, we got to talking about my health, and his exact words were, ‘Get the hell off of Allopurinol today. It is poison and it is killing you.’  WHAT?  You mean there was a reason why I had gained 40+ pounds and I couldn’t think due to brain fog, and I couldn’t stay awake for more than 4 hours because I was so lethargic, all the while feeling brittle and weak nonstop … get outta here!

So I took myself off of the medicine in November 2023 and went on a fast, dropping from 305 to 270 in a few weeks. I thought I was truly on my way to figuring out my body on my own as 2024 started. But I was past the point of no return, I stayed lethargic and in and out of illness through the first 6 months of the year, ending up in the hospital in July, per the previous post.

So what’s the point of all this? Post-COVID, I had doctors use mask mandates to validate their neglect of my health. As a paying customer, I was refused care and put into a ‘death spiral’ that took 18-24 months and almost ended my life. On top of that, I was never asked to discuss my PE from 9 years ago during this 2 year period, I was just given drugs and told to shut up.
 

My previous PE was never discussed — the drugs that they gave me made my overall health worse and impacted my lungs, so I had a DVT and PEs 10 times worse than I did 9 years earlier. With my history, they should have told me to eat 3 things only, work out 2 hours a day, and A, B, C — but all they did was give me drugs to placate me and to mask the issue, meaning the core issue that almost killed me was never addressed over 2 years by multiple health systems, doctors and nurses.

Neglect, misdiagnosis, mistreatment, missed — everything?  How is that possible in today’s day and age? Why were my questions not answered, my input ignored? The answer is much more than just one sentence in a blog, but I think it all comes down to this — the current healthcare system is built for all other stakeholders except the patient. It is an ‘institution first and patient last system.’

This is why I have launched this foundation, along with dozens of experts from every sector of healthcare and, most importantly, with physicians. The only stakeholder abused at the same level of patients is the physician, so we need to work together to rebuild this system or to deliver a new better option. That process launched in August as our team began to develop, but it truly launches in earnest the day we get our first  patient member, and from there grow to 1M, 5M, 10M, and even 100M patient members, all organized through Patients First. As a national collaborative, we can demand change, build change, and deliver a better solution.

If you lost count, yes, I almost died 3 times in 48 years. Is that a good average or not? I’m not sure. Near-death isn’t the only discussion we’ll have about point of failure with our healthcare system. There are holes everywhere, and they affect us every day. My next post will talk about those times in my life when any support could have, I think would have, helped me avoid the stresses already discussed. 

Until next time … Steve