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