Introducing Patients First Foundation & Patient Zero

Gorilla Challenge: Fat & Happy? Part 5

Wed, 19 Feb 2025 17:00:03 GMT

Gorilla Challenge: Fat & Happy? Part 5

Ok, so I guess the best motivator isn’t just putting myself behind in the challenge, like many of you, I am struggling with the mindset and the willpower it is going to take to get this done.

So, what’s the answer? David Goggins is the answer! If any of you know David, please tag this in a message to him, I want to make contact and see if he will be my personal motivator — I cannot get enough of his social media posts where he yells at people!

This makes sense, I have always been more inclined to listen to negative coaching. It all started with my dad, he would talk to me after every game I played, even when I was 10, telling me about all of my mistakes. When my mom would tell him to stop, and tell me what I did right, he would answer, ‘he knows what he did right, everyone tells him that he is good and that he scored a goal or a touchdown, he needs to know to fix what he did wrong.’

So that led to accepting harsh criticism pretty well. Not sure I had much of an option though, it was the 80s and it seemed every coach I had preferred that method of instruction anyway. Soccer, football, basketball — didn’t matter — all of my coaches yelled and screamed and demeaned me (all of us), it was the way that coaching was done back then.

So let’s go coach Goggins! Get in here with me, get in this bunker and help a fat man out! Why? Join the Patients First team, let’s get your message around your book, Can’t Hurt Me , to focus on people in this country taking control of healthcare again!

Or how about this Goggins — if I get down the 60 lbs. as the bet is constructed today, you will meet with me to work out one day and discuss Patients First Foundation. Sound good?

Let’s go people, let’s make this happen. Let’s get hard, let’s not allow the monopolies in healthcare to hurt us, and let’s start defending our natural born rights today, pound by pound — taking control of this healthcare system through action!

Thanks for your time today, keep an eye out for posts coming soon, there are some big things in the works that we are very excited about as a team. I cannot wait to hear your feedback as we continue to implement real action for patients by patients!

Until next time…

Gorilla Challenge: Fat & Happy? Part 4

Mon, 17 Feb 2025 18:44:07 GMT

Gorilla Challenge: Fat & Happy? Part 4

Being fat sucks, it really does. Here I am, starting day 17 of this 90 day challenge and I’m back at 295lbs. How is that possible?

Part of it is that you get busy and you just cannot control your days, going from one thing to the next. You plan to eat X, but then you pick a bit more than you should or you eat Y, because it’s the only thing around while you run from chore to chore.

The other reality is that as soon as you start to lose weight, your body goes crazy. The first week of this challenge, I needed to cut coffee and sugar down, A LOT. So, you go through withdrawal, your body is literally addicted to caffeine and sugar, and you get massive cravings, but it’s more than that, it’s the joint pain, the brain fog, the stiff neck, everything hurts!

Let’s not forget I'm still on 10mg of blood thinner still due to the blood clots in July. How does that affect all of this? Who the hell knows! It’s not like my doctor has an opinion, literally had to fight the guy just to get an echo done on my leg after getting out of the hospital, he didn’t think it mattered to evaluate the leg that almost fell off !? My care has been so bad I am literally starting a primary care clinic with some Patients First Advisors to solve the problems that I just cannot accept in the market anymore!

So, that’s the update, I am in the trials stage of being fat. The next stage is the hard work, and then the final stage is the tribulation! Nothing is better than feeling your body work correctly, feel leaner, bend easier and all of that great body stuff — the tribulation stage is awesome! But there is some hard work coming before there is any celebration.

As always, I put myself behind the 8-ball, needing to lose 60lbs in 75 days instead of 90 days, but hey, maybe I felt bad for Sean when he made the bet, knowing it was too easy! Well, it’s time to get serious, it’s time to win this bet!

Thanks for joining me today, I appreciate your time and hope to hear from you if you have your own personal weight loss story/journey!

Be well, until next time…

Gorilla Challenge: Fat & Happy? Part 3

Sun, 02 Feb 2025 18:15:55 GMT

Gorilla Challenge: Fat & Happy? Part 3

Weighed in 2-2-25 at 9am at 292.2

The thing about being obese is that it is really easy to lose weight. It’s also very easy to gain weight. Over the past few years I have seen my weight go up or down 10 lbs. over a weekend, once your body is ‘out of control’ you lose all normal when it comes to controlling your weight.

This is the reason I’m fasting, you have to get past 21 days in order for things to reset. The good thing is this, great things start to happen after 3 days of water fasting, tremendous things happen after 5 days. On day 6 I’ll introduce detoxing, which allows me to have salt, lemon juice and some syrup. This syrup will give me about 500 calories a day, more if needed, but not more than 1000 calories.

Detoxing in this manner is known as the Master Cleanse, which I’ve done in the past and loved. It was how I fasted for 25 days, as I mentioned in an earlier post, getting past day 7 is the key. After that, all of your emotional and mental ties to eating 3 times a day fall off and you accept the process of drinking your detox cocktail 3-5-7 times a day.

It’s interesting to see just how much time we waste as people eating. Driving to the restaurant or grocery store, then sitting there to eat, or cooking at the house, no matter which option, you probably spend 2-3 hours a day ‘in the eating process.’ It is truly odd to see how you can survive and even thrive investing only 10 minutes a day ‘eating’.

Transformation is not weight loss, it’s an athletic endeavor. It takes will power, accountability, drive, mental toughness and self motivation. It takes me back to all of the days I spent on the field of battle, playing sports through high school and college and all of the personal training needed to get to that game day. I cannot remember how many people told me that I was lucky to be good and score big goals and lead teams to championships, all dismissing the hundreds of hours I put in to build that muscle memory, to ensure that when the time called for it, I was ready to perform and capable to deliver.

That’s sports, but it’s also weight loss, and it’s also life. Being out of shape shows a lack of discipline and a lack of self control, neither of which deliver success in sports or in life. That’s why this is not a weight loss challenge, it is a life choice discussion and realignment to building an optimal lifestyle to fit your goals and objectives.

Until next time...

Gorilla Challenge: Fat & Happy? Part 2

Sat, 01 Feb 2025 20:23:48 GMT

Gorilla Challenge: Fat & Happy? Part 2

So I weighed in last night at 10 pm because I wanted to start tracking the ‘official start’ of my process. I am kicking this 90 day challenge off today with coffee this morning and some soup during the day, and will begin a 5 day water fast tomorrow on the 2nd, so big things should come soon but as always there will be some pain.

Like any fat person, I had to have one last hoorah, so I made sure to have some of the old favorites one last time before kicking off 90 days of ‘reorganizing’ my physical body, but also my mental and emotional life.

I have fasted in the past and I can tell you, it is much more than a physical thing, it truly hits you mentally and emotionally as well. My longest fast to date is 25 days. During this challenge I am going to try to fast for the first 45 days, with nothing more than water and certain detoxes that I will present at the time I start them. The goal is to give my body a full rest and reset, allowing it to take a break from all that digesting work I’ve asked it to do these past few years!

I am not a doctor and I am not giving anyone any health advice, so please have fun watching this process but don’t go replicating it and hurting yourself. To be honest, most of my physician friends think my method is too drastic and tell me to focus on taking 2-3 lbs off per week, like everyone else does. I’m just not built that way, I’m more of a ‘in for a penny, in for a pound’ type of guy, which correlates to this effort nicely!

After 45 days of fasting I believe I’ll switch over to juicing, taking all calories as juiced fruits and vegetables. The goal will be to do this until the end of the 90 day challenge. Along the way I will be taking supplements like Creatine, Amino Acids and other vitamins and minerals, all will be clearly indicated as I may call this the Beast Mode Protocol, maybe we can build a national phenomenon like Andy Frisella did with his program, 75 Hard , why not, right?

In the end Ralph Waldo Emerson said it best, “Without ambition one starts nothing. Without work one finishes nothing. The prize will not be sent to you. You have to win it.” Well it’s time to win, and as I speak for myself, I hope you’ll join me and speak for yourself — let us speak as a Patients First contingent, and if we speak loud enough maybe we can speak as a nation. A nation that is finished with excuses for poor health, a nation finished with paying Trillions of Dollars for a ‘sick care’ system that does not serve us, a nation of people looking to serve one another, support one another and deliver for one another a better system than the one we have allowed to be built to date.

Until next time…(yes I want a cookie)

Gorilla Challenge: Fat & Happy? Part 1

Sat, 01 Feb 2025 19:30:36 GMT

Gorilla Challenge: Fat & Happy? Part 1

The Gorilla part of me is mad, it seems like my time being Fat & Happy has come to an end, it was one helluva run, I gotta say. It’s been a bit since my near death experience and my, ‘I need time to catch my breath, period, and the holiday season is over — so it is FINALLY time! Time to lose weight and get back to being what I’ve always been, an athlete and a man of personal accountability.

Why ? Because my friends, my kids and my business partners told me it’s time. That means something, when others close to you feel compelled to tell you this truth, you need to listen. When people love you enough to tell you the thing you NEED instead of what you WANT to hear, it hits differently.

Either way, I’m finally sick of my own excuses and I’m finally sick of being sick. It’s time to start — AND — my business partner Sean and an advisor to Patients First, bet me that if I lose 60 pounds in the next 90 days he would donate $10,000 to the foundation!

SO IT IS TIME! It is time for EVERYONE to get involved! You all need to dig deep and pony up alongside Sean, and I’ll prove to Sean and to all that losing weight and being healthy is a choice and a state of mind, it is not hard and it is not ‘genetic’ to be out of shape. Enough people have proven that massive transformation is attainable, but you have to realize that the drastic measures that got you out of shape need to be countered by the same level of drastic action to get back to normal health.

I accept Sean’s bet and as I start today, February 1st I will lose 60lbs on or before May 2nd, 90 days out ! I weighed in last night at 297.2 lbs. and will continue to weigh in every morning, documenting all of this through my Instagram, PFF_Patient_Zero. Please join me in the hilarity to follow, I’m sure my friends and colleagues will enjoy this immensely.

So join me on this adventure, it may be fun to watch my transformation, but I’m more excited to watch YOURS ! That’s right, who wants to join me? Maybe we can get some big donors, like your corporate employers, to donate $1 for every 1 lb. lost? Can we get all patients nationally involved? What if we made this a 2025 project — transforming healthcare one person at a time?

Join me, not in a weight transformation, but in a healthcare revolution! Let’s get off the drugs, off the alcohol and back engaged with nature, with each other and with life!

Until next time…

Patient Zero Part 6 - Gorilla Insights: Addressing Feedback

Mon, 06 Jan 2025 00:08:25 GMT

Patient Zero Part - 6
Gorilla Insights: Addressing Feedback

Ok, last post of preachy, sermon-like content, I realize how this all comes across. I’ve been told that my presentation is Angry, Utopian, Redundant and Unclear. So let’s address those comments, as I believe I am speaking for the average patient across this nation.

For some background, I’ve been working in healthcare IT since 1999. I have worked in 46 states, across all of the major cities and nearly 1,000 smaller cities and towns. For nearly 7 years I drove 1,500 miles per week at minimum and then for another 7 years I flew 3 weeks a month across the nation — point being that I’ve had 5,000 breakfasts and lunches at diners, talking with ‘the average American’ and hearing the stories of this nation. As you may guess, I’m not shy — and nothing is better than talking with the five 80 year olds sitting at the diner every morning at 6 a.m. in some small town. You hear stories going back decades, of what we were and what has changed.

So, if I’m being Angry or Utopian, then of the 50,000 conversations I’ve had over the past 25 years, there must be a lot of Angry and Utopian people out there. I’m nothing more than the collective of the experiences I’ve had, and the 50,000 people that I’ve met have provided a storybook that is more horror than comedy or romcom. I’m not sure how I apologize for that, or try to soften the message, all I know is that I am bringing the stories of a nation to the forefront, and asking all of you to tell your story so we can start defining the path forward, what are OUR EXPECTATIONS as patients, as taxpayers, as people.

Angry: Being told I come across as angry is ok, because I think I am and we all are from what I can tell. The murder of the CEO of United and the reaction to it, proves that many people are angry as 30% of all people under the age of 30 believed that this murder was justified. I do not condone murder as a solution, but don’t we have to deal with this national anger? Is it not our obligation to address the elephant in the room; that ‘public utility/service’ companies do more than optimize shareholder value, they can save or kill patients, based on their actions or inactions. Denying care to patients means patients die. While murder is not justified, anger is. As a patient collaborative we have to utilize our collective anger to solve these problems as a whole, not punish one corporate shill that is nothing more than a cog in the machine.

Utopian: So the average person in this nation believes that the government should represent us and do right by us, is that utopian? Isn’t that just basic civic/societal agreement, that we pay into the system to support us all? People have told me that our stated goals via Patients First sounds utopian; this confuses me, because we always tell our kids to aim for the moon, so that if and when they miss, they are still in the stars? All of our sayings / cliches provide a vision of good and ‘utopian’, but when I set goals for Patients First, they sound unreasonable and unattainable? Building our collective voice to drive health equity seems normal to me, how did that become a utopian dream to have a fair and just society?

Redundant: Yes, there are 1,000 foundations trying to solve problems, so what, we cannot build a Patient Collaborative to help direct those groups, to help define needs and how money is invested? Patients First is not being built as the only solution, we need to partner with like minded organizations that are experts in their field, so we can solve more problems faster. If we could get 100M patient members at Patients First, would that not support these other groups and their work, is there a reason why people just assume it would not?

Unclear: Let me be very clear here — first, we are building the only national collaborative of patients in the USA. We are organizing and mobilizing the 202 million people that are in the 18-65 age group, per US Census.

Second, of course we invite the 65+ patients, but we also understand that many of them are on Medicare & Medicaid and as such do not deal with the commercial insurance and employer issues that the rest of us struggle to solve.

Third, those that are 25 and under are typically on their parents insurance plans and do not deal with insurance. That may be true, but I believe the 15-25 year olds to be the saviours of our healthcare system. This demographic is the first generation in the US that has been told that they may not live as long as their parents and probably won’t make more than them either. Imagine that, being told that the American Dream is over and that you’re living in the spiraling down phase of a once great nation. To this age group of young Amercans, you are our greatest hope and greatest asset as a country. I look forward to working with you all to build a healthcare system that protects you and heals you, instead of monetizing you. It’s time for ‘healthcare’ to not be ‘sick care.’

If we can get 10-50-100 million of this group to organize we can advocate in every city, every state and in the White House — our voice can and will be heard, as we move from Literacy to Advocacy to Empowerment, the 3 Pillars of Patients First.

How will we do this? By building technology for us, by us — by owning and managing our own personal data and understanding how we are being monetized, and building mechanisms to modify these current systems to our benefit as patients. We need to BUILD OUR WAY OUT of this mess, there is no easy option, there is no political saviour like RFK Jr. He may be a friend and an advocate, but he needs us to stand up and account for ourselves, that will empower him to work harder and to be more diligent on our behalf, but we have to take the responsibility first.

Sorry, got preachy again, but that’s the Gorilla in me, that’s the passion of the everyday American patient and taxpayer. Let’s use that anger, let’s build our utopia (or just a respectful relationship to our masters) and let’s be clear in what we are building together as a stakeholder in this American Dream.

Please send me your thoughts via this form so that you can have your voice heard, how fast can we get to 1 Million Members? Bring your friends and family, we need your support and we need your help to deliver real change for all of us.

Until next time … Steve

Patient Zero Part 5 - Gorilla Insights: The Beginning

Fri, 03 Jan 2025 00:02:00 GMT

Patient Zero Part - 5
Gorilla Insights: Advocacy for Rebuilding Healthcare

So near death experiences aren’t the only failure of healthcare, like I said earlier, there are many stakeholders to blame — or hold to account. Where did it start for you as a patient, or as an employee (insider) working in healthcare, or as a caregiver trying to keep your parents healthy and alive?

I can look back, with the information now available and say that it started everywhere for me, with everything — because everything affects our health. I remember eating chips back in high school, and specifically at a family event where there were chips with dip. As I ate them, I remarked to my family that they tasted so different. I asked, ‘what did they buy’ and why? Turns out that they got the regular chips, nothing special, but they were made with a ‘new and better oil’ so they tasted different. Just like in that same time period, everyone started using Splenda instead of regular sugar. Looking back, those ‘new seed oils’ and this new ‘better sugar Splenda’ were much more unhealthy than their predecessors. In fact they were just cheaper ingredients, so that the food manufacturers could make more money per unit — that’s all it ever is right, health be damned, corporate profits rule the day.

RFK Jr. has set his sights on ultra-processed foods for a reason, these products are killing us. The ingredients used in the U.S. food supply are AGAINST THE LAW in the EU and thus their same ‘chip or cookie’ is a different version than what is sold in the U.S.!

How is that possible? With the FDA and the NIH, and the whomever, whatever, agency or leadership personality — why is it that every stakeholder that was supposed to protect the American patient (taxpayer, consumer) is not being held accountable to this obvious abuse of their role?

Looking back, it makes sense now why I started having massive intestinal issues when I was 25. I actually forced a doctor to order me a colonoscopy because I had such bad day to day issues, and I had recently had a friend get diagnosed with cancer of the gut. I couldn’t believe that I didn’t have cancer after feeling so bad for more than a year. In the end, my colon was the ‘best colon’ he had seen in a decade! I didn’t win an award, no Grammy for nicest colon, but it was still regarded as a personal accomplishment by me and those close to me, which is me!

What was the answer? No diet changes, no exercise changes, no feedback at all other than, take this pill for the rest of your life because you have IBS. Wait what? I have irritable bowel syndrome at 25, after not having any issues for 25 years? Where did it come from, what created this, what can I do to fix it? Nothing — nothing! Just take this pill!

So our whole country was given sh&t food, got sick and then told there was a pill to fix it. Not sure if any of you have been gaslit in the past, but this is gaslighting 101, isn’t it? They create the problem, you question your own sanity, then they provide the solution and you’re supposed to thank them — how in the hell does that work?

There are dozens of these stories, hundreds of them, for all of us. This is why Patients First is so important to me, we need to catalog these experiences nationally, and we need to act as a collective moving forward, so that we can demand a seat at the table where these decisions are being made. The politician does not represent us, they are a different class citizen, everything they do proves that to you everyday. They don’t even have the same healthcare coverage we do, they built our system and then don’t have to live within it! Collectively, we need to educate ourselves, once we are educated (on the same page) we can advocate for our needs, and once we

There are 1,000 foundations and 10,000 new healthcare companies formed every year — all to solve these problems. Do you know what none of them share with Patients First? We are building this for patients, by patients — they are all backed by big money (bankers, hedge funds) and thus will always serve big money — Patients First will serve patients today, tomorrow and always.

We are building an ecosystem of patient leaders, of for profit companies, and of non-profits organizations that are focused on the long term health of the American patient. Costs need to be controlled, transparency needs to be REAL, interoperability across technology needs to finally be allowed and all organizations earning money off of our lives (and deaths) need to be making that money responsibly.

Join the team, join the fight and make sure your voice is heard.

Until next time…Steve

Patient Zero Part 4 - Gorilla Insights: Advocacy for Rebuilding Healthcare

Thu, 02 Jan 2025 23:50:11 GMT

Patient Zero Part 4 -
Gorilla Insights: Advocacy for Rebuilding Healthcare

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

Patient Zero Part 3 - Gorilla Insights: Accountability in Healthcare

Tue, 31 Dec 2024 23:36:33 GMT

Patient Zero Part 3 -
Gorilla Insights: Accountability in Healthcare

So where were we? Oh yeah, I got discharged on Saturday, August 3rd, at 2 p.m., and by Monday, August 5th, at 1 p.m. I received a denial of obligation from United. How did it get there that fast? Did they hire someone to drive it to me to make sure I knew they were going to screw me? Having a letter telling me that there was a ‘restrictive clause’ on page 50 of a 70-page contract that I had no right to review and negotiate was hilarious! It was better knowing that they recorded my two calls with their support team that clearly told me that my coverage allowed immediate use — remember, they told me the only ‘restriction’ was that the payment needed to be processed! I cannot wait to get those recordings during discovery — not sure if we will get there, but I know I’m not caving in just because someone threatens me with ‘going to collections!’

That’s the funny part, too — you almost die from the care they withhold for several days while the banks sort out the payment, and then, you have to deal with being threatened with collections or bankruptcy within one to two days of being ‘saved’ and discharged. As a patient, as a human, you should be celebrating life and winning the battle against a near-death experience — but it is Corporate Policy to have your life ruined by a $300B conglomerate that couldn’t care less about you as a human. All they care about is quarterly stock prices and bonuses.

UnitedHealth Group makes an estimated $1.8 billion in profit each month, money that primarily fills the pockets of top executives and shareholders, not patients like you and me who are struggling to survive. They sure as hell need that money more than I need my life or the time to recover and heal emotionally, and after my kids started preparing for my death. My kids spent five agonizing days talking about ‘what if,’ and then when I got home my teenagers asked me ‘how can we pay a $160,000 bill?’ How is this humane? How did this become normalized?

A family member of mine had the same experience, she went into the hospital, and almost died. BCBS removed her from her husband’s policy due to a ‘paperwork issue,’ then billed her $300k+ the week she got home. It took her 3 years to get BCBS to admit that they proactively dropped her to avoid the claims, but she was chased by all of the providers for three years and threatened with collections, credit destruction, and bankruptcy. How does she get all of that back? The aggravation, the hundreds of hours of talking with her husband about their options, the relentless attack of voicemails and letters and emails from ‘ambulance-chasing’ lawyers and collections people with no soul?

Patients First isn’t here only to discuss treatment options and the science behind them (though we will) — we need to talk about the process, about the patient touchpoints, about the lack of empathy, and about the loss of our humanity during a time when all parties should be focused on providing nothing but humane interactions to help patients fight their battles. Unfortunately, humanity has been removed from healthcare, and it is time we bring it back.

The worst part of the story isn’t even United — it is how I got into that hospital to start. We’ll tackle that in the next post. As always, thanks for your time and for choosing to spend a few minutes with me here today.

Until next time … Steve

Patient Zero Part 2 - Gorilla Insights: Restoring Humanity in Healthcare

Fri, 27 Dec 2024 23:20:40 GMT

Patient Zero Part 2 -
Gorilla Insights: Restoring Humanity in Healthcare

Ok, the last post was a bit evangelical, I’m sorry, but I didn’t know where else to start. Should I have just jumped into telling you how bad my healthcare experience was, or should we be evaluating this discussion from a more holistic perspective than just blaming all of the bad actors? I guess we’ll never know, but thanks for coming back!

Healthcare is not ‘just a product or service’ — it is Us, it is our humanity, representing the core of our being — I guess that’s where I was coming from. The healthcare system isn’t working right now because we have forgotten this basic truth. This cannot be more evident than in the recent incident involving the CEO of United. Healthcare is not an industry, it is not a business to generate wealth. It is a core and basic right for all of us. When one person, as a patient, feels that another person has control over this basic right and abuses their position while delivering on that right, bad things will happen.

While I in no way condone this murder, as a society, we have to understand what led to it. We also have to understand that ‘bad things happening’ have to be evaluated from all sides, such as how many patients did not get authorized for care that a physician suggested because United said no, and the patient then died. What if people responded to this post, telling us their story, and we found that 1,000 people had a friend or family member in this situation? What if it was 100,000? What if it’s one million?

The point is that bad things happen, like patients dying and those aggrieved by that death taking action, resulting in murder when healthcare is not aligned with the patient. I think we can all agree that it is not aligned right now, and it hasn’t been for decades.

So, my death experiences — how does this all relate? I told you of my first near-death experience in my last post, so this time, we’ll talk about my latest. This past July, I had a horrible DVT (deep vein thrombosis) form in my calf. I did not have insurance at the time due to several factors, one of them being I didn’t realize I could buy private insurance at any time without the marketplace or an employer’s support. Funny, after being in healthcare for 25 years, I didn’t even know where to find appropriate insurance options until I was literally lying on my couch dying.

So I got online to figure out what to do, knowing my leg is getting worse and trying to figure out how to go to the hospital as ‘cash pay.’ How do I negotiate that discussion walking in? Instead, Google saw my searches and pushed me to United and their private insurance options. So I sign up on Friday and spend the next three days determining what my policy allows, and what I can or cannot do. Mind you, I passed out in the shower on Friday morning, and my son had to come up to find me lying there sprawled out, hoping I was not dead.

I called United on Saturday to finalize my purchase, and then on Sunday, I called to ask about my policy and what it said regarding getting care. I got confirmation from the woman that I would have coverage ASAP, but then she warned me that if United did not receive my payment, they would not cover me and probably cancel my policy. So, sitting there with my leg exploding in pain on Monday and unable to walk, I called United again. This time, I talked to a guy who confirmed that the policy was active and that I could go get care that day. I asked him about what the woman said on Saturday, and he checked that the payment was still not received, so he agreed and told me to wait till the bank cleared the check.

So I set the alarm for 5 a.m. Tuesday morning, just to wake up and see if my bank had cleared my payment. It did! My son took me to the hospital at 7 a.m. I got tests done, and the doctor came to present me with the results around 9 a.m. It was confirmed — I have a DVT that is really bad, BUT that was not even their concern. My lungs were at 30% capacity, and I was slowly dying as my lungs failed. The doctor says we need to be aggressive and immediately launch a response on my lungs using the TPA protocol (Tissue Plasminogen Activator). It requires a stent to deliver medication directly into my lungs to break down the clots, BUT I’m on Heparin (blood thinner), and if the stent punctures my vein, I’ll bleed out and die in 10 minutes.

WOW, that’s a fun conversation to have with a doctor at 9 a.m. on a Tuesday with your son sitting next to you, wondering if this is the last day or two of having a dad. But what do you do? Nothing — you just continue to move forward and hope for the best.

So the therapy started after I hung out with the Interventional Radiology team (which has its own funny stories I’ll tell soon) and wasn’t allowed to move for 50 hours! I laid still, staring at the ceiling with a straight back, as ‘bending’ could create a puncture and kill me. Let’s just say it gave me a ton of time to think and was a big reason why I launched Patients First the day I got out of the hospital!

Does what you read about my story so far make you understand why I wanted to build a patient advocacy foundation? It may not be much yet, but the ‘little things’ that happened around this whole experience proved to me that this effort was needed, so here we are. Read the next post to learn the best parts of the story, like United denying their obligations — yeah, we are going all in on the next post. We have to — it is time to. We, as patients, have endured too much for too long. It is time to organize, to collaborate and to act.

Until next time … Steve

Patient Zero Part 1 - Gorilla Insights: Resilience in Healthcare Struggles

Mon, 23 Dec 2024 23:22:41 GMT

Patient Zero Part 1 -
Gorilla Insights: Resilience in Healthcare Struggles

Why a gorilla you may ask, well, let’s just say I’ve been called that a few times in my life. While I can be polished and executive in my delivery, I am also very blunt and just as aggressive as I am kind in my tone. As I write my personal story, and as I speak as a patient, I believe that full transparency is key, and that means full emotional transparency, as healthcare is not just ‘data and facts,’ it is also our mind, our emotions and our spirit — healthcare is as much love as it is any medical device, doctor or drug.

As you read these posts, know that I understand how they may shock many, or they may be too honest for some — but the only way to fix a system that has been broken for 50+ years is to lay it all on the line and get real about the problems facing each of us as a patient and as a taxpayer in the U.S. moving into 2025.

So, funny thing about me, I ‘almost die’ pretty often. For this reason, I’m growing more concerned about the state of healthcare as I grow older — I’m not sure how many more times I can survive one of God's tests!

It is said that ‘God gives His toughest battles to His strongest soldiers,’ Well, I must be Achilles for you Boomers, or Rambo for the GEN X population, or Iron Man for the Millennials! I think that I was tested so that I could tell this story and be a barometer of the healthcare system that we all depend on.

Through this series of posts, I will be discussing my personal experiences. If you are comfortable sharing your experiences, please connect with me through the website forms, and we can begin building the collective experiences in a manner that drives real systematic change — or build a new system ourselves.

So you’ve read this far hoping to see the near-death stories? Well, I’m not one to disappoint, so let’s dive in!

The first time I almost died, I was a baby. I got pneumonia and was put into the ICU, where I was read my last rites 3 times — at the end of each day, while my parents were told that I would not make it through the night. Over the years, I have heard the story retold by my parents, grandparents, and other family members who lived through it.

While I don’t have the memory of that week, I have the knowledge that no man knows another man’s journey. There was no test that could predict I would live, there was no pastor that knew God’s will — there was just me, less than a year old, fighting for my life and making it to the next day.

This matters — this matters more than most people want to recognize or admit. We want to rely on others, on technology, on ‘expert opinions,’ but what we seem to forget is the power we hold within ourselves, our own divine right and energy, and our will to live. This means we all have a responsibility to ourselves — and by holding ourselves accountable, as well as our family and friends, we can reverse the wrongs in healthcare just by taking control. As Hippocrates said, “The natural healing force within each of us is the greatest force in getting well.”

That is what the Patients First Foundation is all about — holding stakeholders accountable and aligning them to repair or even rebuild our healthcare system. Either path can work, but it is clear, the status quo must end.

Accountability for all — meaning we as patients have to modify our ways and our expectations of ourselves and each other. We are the change, and we have the power — once again to quote Hippocrates, “Before you heal someone, ask him if he's willing to give up the things that make him sick.”

Join me as we start this journey of change. Together, we will rebuild the healthcare system to meet our needs and to do so with respect, dignity, and humanity. And along the way, I’ll tell you the other half dozen times I almost died … it only gets better, I promise!

Thanks for your time and consideration today, both are appreciated!

Until next time … Steve

Introducing Patients First Foundation & Patient Zero

Thu, 19 Dec 2024 21:46:33 GMT

Introducing Patients First Foundation & Patient Zero

Steve Carbonara

Healthcare should be about patients—not profits.

For far too long, the healthcare system has been guided by corporate priorities, what we call ‘institutional first’ healthcare, while patients have faced limited access to timely, affordable care. The Patients First Foundation is being launched because it is time to shift control back to patients, putting their well-being at the center of every decision, and ending corporate ownership of our health.

I’m Steve Carbonara and I am going to be sharing my personal health journey over these past 5 decades in order to shed a light on what is wrong with our system, both from a patient and healthcare technology insider point of view. I will be posting a 3-part blog post this next week in my role as Patient Zero, I will be telling my entire healthcare experience. Like many of you, I have been complaining for years about my experience, and now it is time to use these experiences to define, develop and drive solutions.

I am looking for the next One Million Patient Stories from all of you, so that we can prove how common these issues are, while learning which are the most costly or deadly issues we need to solve first, while we begin to build a process to hold every stakeholder accountable for their actions moving forward. If you want to share a story with us please use this link .

I am also looking for other healthcare professionals, like me you have stories about the waste, fraud and abuse across every sector of the healthcare industry. Please Share Your ‘Insider’ Stories so that others can begin to understand what we are up against with this corporate tyranny over healthcare. If you want to share a story with us please use this link .

My team and I are building a national collaborative of patients, and a movement to empower individuals to manage their health, make informed choices, and advocate for policies that genuinely support patient wellness. This is a call to action for every patient, physician, nurse, caregiver, healthcare professional and advocate—to join us in building a patient-led system that prioritizes health over profits.

Thank you for your time here today, I appreciate you spending 10 minutes with me and letting me introduce you to this foundation and our team, we all appreciate your consideration. Consideration of telling us your story, or becoming a member, or partnering your company to the foundation - all we can ask is that you consider how you can make an impact and help your fellow patients and those that you are a caretaker for today, or maybe will be in the future.

As always, please contact us with any questions or comments - until next time…

Steve

Introducing Patients First Foundation & Patient Zero

Gorilla Challenge: Fat & Happy? Part 5

Gorilla Challenge: Fat & Happy? Part 5

Gorilla Challenge: Fat & Happy? Part 4

Gorilla Challenge: Fat & Happy? Part 4

Gorilla Challenge: Fat & Happy? Part 3

Gorilla Challenge: Fat & Happy? Part 3

Gorilla Challenge: Fat & Happy? Part 2

Gorilla Challenge: Fat & Happy? Part 2

Gorilla Challenge: Fat & Happy? Part 1

Gorilla Challenge: Fat & Happy? Part 1

Patient Zero Part 6 - Gorilla Insights: Addressing Feedback

Patient Zero Part - 6 Gorilla Insights: Addressing Feedback

Patient Zero Part 5 - Gorilla Insights: The Beginning

Patient Zero Part - 5 Gorilla Insights: Advocacy for Rebuilding Healthcare

Patient Zero Part 4 - Gorilla Insights: Advocacy for Rebuilding Healthcare

Patient Zero Part 4 - Gorilla Insights: Advocacy for Rebuilding Healthcare

Patient Zero Part 3 - Gorilla Insights: Accountability in Healthcare

Patient Zero Part 3 - Gorilla Insights: Accountability in Healthcare

Patient Zero Part 2 - Gorilla Insights: Restoring Humanity in Healthcare

Patient Zero Part 2 - Gorilla Insights: Restoring Humanity in Healthcare

Patient Zero Part 1 - Gorilla Insights: Resilience in Healthcare Struggles

Patient Zero Part 1 - Gorilla Insights: Resilience in Healthcare Struggles

Introducing Patients First Foundation & Patient Zero

Healthcare should be about patients—not profits.

Patient Zero Part - 6
Gorilla Insights: Addressing Feedback

Patient Zero Part - 5
Gorilla Insights: Advocacy for Rebuilding Healthcare

Patient Zero Part 4 -
Gorilla Insights: Advocacy for Rebuilding Healthcare

Patient Zero Part 3 -
Gorilla Insights: Accountability in Healthcare

Patient Zero Part 2 -
Gorilla Insights: Restoring Humanity in Healthcare

Patient Zero Part 1 -
Gorilla Insights: Resilience in Healthcare Struggles