More Than Our Story

Mark Opauszky

Mark Opauszky shares his story of unbelievable resilience in his fight against necrotizing fasciitis. From waking up in hospital, to making the unconscionable decision to have his leg amputated, his outlook on life has remained positive and resolute.

Highlights

Five years ago I became unexpectedly ill... I wound up passing out in my hotel room. Paramedics were called. I went to the hospital. Initially, people thought I had the flu, but when my lab test came back, it was much, much worse than that. I woke up five weeks later, after having been on life support and in a coma, and my whole body was destroyed.

Everything was just a giant mess, and that's the reality that I phased back into.

During that time when I was in the coma, I had ostensibly expired at least twice. They gave me a very, very low chance of survival. This had been explained to my wife that I probably wasn't going to come back. And if I did survive, I wouldn't be the same person cognitively or physically or any other which way. And, yet here I am today, grateful.

The prevailing theory is that the bruise or the hematoma in (my knee) became a sort of a breeding ground for strep A bacteria that was everywhere because it was flu season, and 1 in 10,000,000 shot it just got angry, wakes up the wrong way and started trying to start trying to kill me.

It results in an extremely high fever: 104, 105... and that is what triggers the cascading effect that results In over 50 percent of the cases right away, in death within 48 hours.

I can't remember the last time I was in a hospital, and suddenly there I am with this condition now.

When I was first brought into the emergency room, no one was really sure what it was. Even for a busy Manhattan hospital, they might have seen two cases like this in the last 5 or 10 years. That's how rare it was.

It wasn't until they had done some blood panels and an MRI that they sort of came back, and then all of a sudden everything just exploded into activity, and they were racing me into surgery to try to cut out the infection.

Waking up is one thing. You sort of phase back into reality, and it's a bit like waking up from a dream. I remember opening my eyes. I remember, a room full of people. All of their faces are staring at you.

I tried to say something humorous or funny or something. But I couldn't talk. Nothing worked. And then I just sort of passed out, and that's. I don't really remember much after that for a couple of days.

When you come out of a coma like I was in, you have this profound amnesia. Your internal dialog is intact. You know, but you're not quite sure what your name is. You're not quite sure how you got here. You know, you're in a hospital. You know, you're probably in trouble. You know, something happened, but I didn't recognize, my wife right away. I didn't know what year it was. They're giving me all these cognitive tests, which I kept failing.

I couldn't really speak very well... Imagine you're in a football stadium at one end. You'd have to shout for somebody at the other end to hear you. But in reality, the words are barely coming out.

After a couple days with a little bit of sleep and a bit more healing and a bit more oxygen to my brain, things start to make sense again. I recognize my wife, I start understanding, I start listening to what the doctors were saying, and I started to understand that, I had, contracted, a terrible infection, that I had slipped into septic shock at least twice, possibly three times, which is very difficult, to recover from. I'd had multiple surgeries and, that things weren't going to go well. My kidneys were not functioning... There was damage to the heart muscle... I was going to be put on a transplant list, for my liver, which also was failing. I had a collapsed lung... and my arms and legs had turned black from lack of oxygen to my extremities.

It became apparent that I might lose my arms and legs, at the same time.

One morning they were going to do a dressing change on my leg. This is the leg that had been hurting. And so they take off all the dressings... and you get to see your leg. It looked like I'd been attacked by a shark. I could see my complete tibia, and I could see sections of femur... There were muscles and tendons all over the place in places they didn't belong. They had basically gutted it out. They they'd gone very aggressively to try to cut out the infection and so there just wasn't any tissue on it.

It probably took about 4 or 5 days for all of that information to sort of get into my head and for me to be able to parse it in some kind of an order that I could start thinking about it in an organized way.

I was fortunate because the coma for me went on for a very long time. Different people who have been in comas describe different situations. But for me, it was a bizarre dream state, that went on for, I swear in my mind 2 to 3 years. That's how long I felt like I was in a coma for in real time. So, weirdly, even though I didn't know my name, didn't know who I was. Didn't have any sense of my arms and my legs or any other real things. You are still you. Inside that time, floating around like a ball of consciousness in an ocean. And that's what it was like.

So believe it or not, I'd had a lot of time to think even before I woke up and got all this stuff, and during that time, and I remember it all very vividly... I'd contemplated whether I was alive. I'd contemplated whether I was dead. I remember spending what was to me six months just thinking about whether or not I'm dead. Then I spent six months wondering well, if I'm not dead, then am I supposed to be doing something?... So by the time I woke up... I think I was just kind of happy to be here.

When I realized that element of the reality, where I have a wife, and two children phased back into my head, I was like, you've got kids, man... Where are the kids? They must be lonely and horrified and scared, and you start to think about. I would have done anything just to spend 15 minutes with my kids, even if that was the last thing that I did.

I don't recall feeling angry or scared or any of those things that I would have expected that I would have felt, or horrified, or even diminished at that point. I was just pleased to be back in my body. Experiencing the world, albeit in a horrifying altered way, and angling towards a chance to, hopefully very soon, see my children again.

I spent time talking to the caseworkers and the folks that were much more concerned about my mental recovery. And they all had sort of similar (feeling) that I just didn't seem to be repressing anything. Everything seemed fairly matter of fact, to me, and you know, I never thought of myself as that person. Honestly, before I got sick I would have been horrified at the notion of even accidentally losing a finger in an accident or something. I would have felt so diminished. And here I was, I was all messed up, and it's just kind of like. Well let's just see what happens tomorrow, you know. One foot in front of the other and let's, let's get to work and see, see how much we can do.

I'm not going to say it was fun. But, it was strangely affirming.

I live an adaptive lifestyle. I need prosthetics to walk. But I do most of the things that I used to... I can ski, and I used to do a little boxing, and so I still do that.

From a health standpoint there are some practical considerations, I monitor my heart, because, while my liver (and kidneys) did recover, much to everybody's surprise... We were never quite sure if there was damage to my heart walls or a potential valvular damage. So I scan for rhythmic issues and structural issues of my heart on a fairly regular basis.

I'm trying to play the long game. I'm thinking I'm trying to train for when I'm 85.... Will I be able to hold my grandkids?... Even with the deterioration of age and the invariably the deterioration of my residual limbs, you know, "what's it going to be like?".

There are these things that you have to do to try to attempt to generate some additional longevity, and I see that as a way to respect the gift of additional time on the planet that I've been given, and I decided to treat it like a hobby rather than a burden.

I wanted to do something that could help a lot of people. Not just a few. And I didn't want to have another company where we were just helping companies make more money. You know, I wanted to actually help normal people.

I know a little bit about engineering. I know a little bit about running, technology companies. I know a little bit about finance. I know a lot more about being a patient now than I ever did before... I think, what if we could create some products, or some kind of a tool doesn't just help doctors but actually helps patients help themselves and that became the idea behind Stethophone.... It's the most meaningful work I've done in my life, and again, I'm just grateful for the chance to do it.

A couple of articles got written about my situation... And so people were seeking me out and calling me up to say, "my dad, or my son, or my wife has just been diagnosed with “nec-fasc”... they're in septic shock. They're saying they're going to be in a coma for a while. I don't know what to do. I was researching it. The prognosis sounds horrifying. You know, can you just talk to me for a while about what to expect and where to go and what's going to happen?

I've had a chance to come in to work with some of my former doctors and some of my recovery team to talk to people, who were trying to make the final decision to amputate a limb. This is something that I had to decide because initially they sort of saved my one leg, but it didn't work very well. It was going to be a disease vector forever. I was going to chronic bone infections. It hurt, it looked terrible, and it just wasn't me. And so I was like... "Look, guys, thanks for thanks for all the work, but I think we have to cut this thing off, and you know, that's a wild experience.

Adaptation is what we do. It's what humans do. It's what we're supposed to be good at... If you're just talking about a few more months of life, or whether you're talking about the great unknown of how much more time of life you've got. Adapt to your situation and what other choice do we really have?

We can cry about it, we can give up, or we can adapt. Those are our three choices. Which person do you want to be?

Gratitude is a really big part of being present and being alive and staying curious and interested in your surroundings no matter what your condition is.

Every day is a gift and nothing is worth, getting angry about ruining your day over or dwelling on. The problems that we invent in our head are often much worse than the actual things that are going on around us. And frankly it diminishes from your ability to actually help yourself, and help other people when things really are dire. So, you know. Shit happens. Don't waste time.

Sparrow BioAcoustics

Sparrow is the SaMD company that created Stethophone – the world’s first FDA cleared application that transforms your smartphone into a high-end medical stethoscope.
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Obstacles

Mark’s personal blog on startups, struggles and stoicism.

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Picture of Daniel

Daniel

Daniel is an extremely curious person, a wealth of random knowledge and facts. Extremely passionate about a vast array of interests ranging from health to history, science to athletics, everything culinary and the list goes on. Trust us, you would want to be on his team for Trivial Pursuit. Daniel is also years into his battle with brain cancer. He experienced a seizure while on a Zoom call at work in late 2020 and quite literally, his life changed within minutes. After his operation he started to talk about his story but had always known it was more than just him. From then, More Than Our Story became a PROJECT that has evolved into the starting point it is today.

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