Superman Is Grounded: Sarcoidosis, Heart Failure, and the Two Times My Lung Quit on Me

In 2007, I got the kind of news that drops into your life like a cast-iron skillet falling off a high shelf. Loud. Sudden. Unapologetic. The doctors told me sarcoidosis was affecting my heart, and that I had five to ten years before I’d likely need a heart and lung transplant.

Five to ten years.

That’s the part people repeat softly, like it’s meant to soothe you into acceptance. Five to ten years, as if the phrase itself is supposed to tuck you in at night and whisper, “There, there.” Meanwhile, I’m standing there thinking, Excuse me, no. I did not order this. Please return to sender.

So I did what I’ve always done when life tries to hand me something I didn’t ask for: I got stubborn. Not cute stubborn. Not “I’ll finish this puzzle even if it ruins my weekend” stubborn. I mean the deep, scorched-earth kind of stubborn where your brain squares up with reality like, Try me.

I decided I wasn’t getting a transplant. Period. I was going to live way past that ten-year prognosis with the heart and lungs I was born with. I was going to prove them wrong. I was going to outlive their timeline out of pure spite and excellent seasoning.

And listen—mindset matters. There’s something powerful about refusing to fold. There’s something necessary about telling your body, your fear, your future, and sometimes your medical chart, “Not today.” That mindset can keep you alive. It can keep you moving. It can keep you showing up for your life when it would be easier to disappear into a blanket burrito and become one with the couch.

But that same mindset can also turn into a performance. It can turn into this exhausting one-person Broadway show called Look At Me Being Fine, featuring hit songs like “I Don’t Need Help,” “I’ll Rest Later,” and the crowd favorite, “This Is Probably Just Indigestion.”

You can survive with that mentality. You can even thrive with it. But you can also push so hard you stop listening to the only thing that’s actually telling the truth: your body.

These past couple of months, I haven’t been doing well. Not in the dramatic, fainting-on-the-stairs kind of way. More like the slow-creep kind of way, the kind that’s easy to normalize when you’re used to living inside a body that’s always negotiating with itself.

My breathing had gotten worse. More shortness of breath. More fatigue. More of that “something is off” feeling I didn’t have the energy to explain, even to myself. Yet I kept trying to prove to the world—and to me—that I was fine.

Spoiler: the world knew. My wife definitely knew. My body knew. The only person still auditioning for the role of “Totally Fine Human” was me, and even I wasn’t buying it. I was just committed to the bit.

I was working long hours, some days fourteen or fifteen hours, without a break. I wasn’t using my oxygen as much as I should. And before anyone says, “But why?” let me explain how denial works when you live with chronic illness.

Denial isn’t always loud. It doesn’t always look like “I refuse to acknowledge reality.” Sometimes it looks like, “I’ll use oxygen later.” Sometimes it looks like, “I’ll be fine for this errand.” Sometimes it looks like, “I don’t want to deal with the tubing, the stares, the logistics, the extra step.” Sometimes it looks like, “I want one day where I can pretend I’m not carrying a whole medical situation around in my chest.”

And yes, I was wearing a face mask all day at work—because 2020—and if you’ve never tried breathing through a mask while your lungs and heart are already having a complicated relationship, let me tell you: it adds a little spice you didn’t request. It’s like running a kitchen service while someone occasionally puts their hand over your mouth and whispers, “Good luck.”

On top of that, I wasn’t exercising. And my diet in the last couple of weeks had way too much salt. Which is hilarious, because I’m a chef. I know better. I know what sodium does. I know what it means for fluid retention and blood pressure and the whole “heart failure doesn’t enjoy your little salt era” situation.

But you know what happens when you’re tired and you’re busy and your body feels like it’s always demanding something? You start taking shortcuts. And then you take more shortcuts. And eventually your entire life becomes one long shortcut, and you call it “getting through the week.”

That’s when life intervened to slap me across the head and tell me I needed to slow down and take care of myself.

I was leaving work and had just put my portable oxygen concentrator in the front seat of my car when pain hit me—hard—between my left shoulder blade and my spine. Sudden. Piercing. Intense. The kind of pain that makes you make a noise you didn’t plan to make.

My first thought was, Great. I pulled something. Because my brain always tries to find the least inconvenient explanation first. It’s very committed to protecting my schedule.

I got the rest of my stuff, locked up at work, and drove home. Every movement felt wrong, but I kept going because that’s what I do. When you’ve lived with sarcoidosis and heart issues long enough, you develop this weird relationship with pain and discomfort. You don’t ignore it exactly—you just file it under “things that happen” and keep moving unless it becomes undeniable.

When I got home and stepped out of the car, my wife saw my face and knew immediately something was wrong.

My pain tolerance is high. That’s not a brag—it’s a coping mechanism. If you live with chronic illness, you learn how to exist with discomfort in the background like it’s elevator music. So if I’m showing pain on my face, if I’m wincing, if I’m moving like a man twice my age? That means it’s real.

I told her my back started to hurt for no reason. And as I was telling her, another pain shot into my chest—right near my heart. Not mild. Not subtle. Intense.

For a split second my brain did what it always does when it panics: Is this a heart attack?

I know my heart. I know when it’s beating well, when it’s out of rhythm, when it’s too fast, too slow, when it does that unsettling flutter that makes you pause mid-sentence. I feel my heart in a way most people don’t. It’s not poetic—it’s vigilance.

But this pain didn’t feel like my heart. It felt like it was right next to it. Like something had set up shop beside the heart and decided to start rearranging furniture.

Still, I took an ECG on my Apple Watch, because welcome to modern life: we are all one software update away from becoming our own cardiology department. I did five different readings. They all came back normal. The watch also politely reminded me it doesn’t check for heart attacks, because nothing is allowed to be reassuring without also being legally terrified.

I knew it wasn’t a heart attack. But the pain was bad.

The next morning the pain had subsided substantially. My wife asked if I needed to go to the doctor and, since it had eased up, I said no. It only hurt when I took a deep breath. I wondered if it was indigestion.

In reality, it was denial.

The second night I went to bed and when I lay flat, the pain in my chest was intense. So the next morning I sent my cardiologist the ECG reports from my watch. He told me it wasn’t looking like a heart attack, but the pain I described could be from a blood clot in the lung.

I did not want to go to the hospital. Not because I’m anti-doctor, but because Covid was raging and who wants to sit in an ER during a pandemic when your body already has enough drama?

Then I coughed up blood.

That will rearrange your priorities.

So I went in. They did a CT scan and an EKG and thankfully I did not have a blood clot or a heart attack. What I did have was a pneumothorax.

A collapsed lung.

My lung literally popped.

Yes, I ended up in the ER. I was hospitalized for three days. Thankfully they did not do surgery because the collapse was right next to my heart and I’m on blood thinners, so the procedure risks were too high. They monitored me, managed it carefully, and sent me home with one big message I didn’t want to hear but absolutely needed.

I think I realized then that I am not Superman. I am not invincible. I have a lot going on that I need to look after, seriously.

And then they showed me the CT scan images.

I’m always told my lungs are scarred. I’ve heard it so many times it almost stopped meaning anything. Scarred lungs. Sure. Okay. Abstract. Something you can live around if you don’t look too closely.

But when I saw those images, it wasn’t abstract. There were literal holes inside my lung from the sarcoidosis.

Holes.

Inside.

My lung.

Seeing that put everything into a new perspective. It woke me up.

And apparently, I hit the snooze button.

Because six months later, in May of 2021, that same lung collapsed again.

This time, though, I knew exactly what it was. No guessing. No bargaining. No creative storytelling about muscles or indigestion or some mysterious one-off pain. I felt it and thought, Oh. You again. I went to the doctor the next day—because growth—but let’s not get carried away. He confirmed it, looked at me with that very specific doctor face, and told me to get to the ER.

And me?

I decided to drive home first.

Twenty minutes. I figured I’d pick up my wife, grab some clothes, maybe a charger, the usual things you want when you’re about to be admitted. Because I am a stubborn man who knows his body and said, confidently and incorrectly, I’ll be okay. It’s fine to go home first.

This is not bravery. This is not wisdom. This is me being exactly who I am.

I was checked in, and this time there was no wiggling out of it. They told me I needed surgery. No “let’s wait and see.” No “maybe it will resolve.” Just a calm, definitive: Yes. Surgery.

They scheduled it for the next day because my blood thinners needed one more day to clear. The irony is that when I knew it happened again, I stopped my blood thinners on my own. I do not recommend this. I am not a role model. I am simply narrating my poor decision-making.

I had the surgery. And honestly, five years later, I’ll say this: I’m better at using my oxygen.

Not good. Better.

There’s a difference.

My wife would probably like to hit me over the head with one of my portable concentrators. And yes, I said concentrators. Plural. This is not a flex. This is an indictment.

I have one regular concentrator and two portables. Two. And still, I struggle. Still, I make excuses. My back hurts. My nose bleeds. The tubing is annoying. Blah blah blah. The hits just keep coming, courtesy of my own mouth.

Is it vanity? No. Honestly not.

It’s having to look at the thing that visibly reminds you that you are broken.

It’s the object that announces, without asking your permission, that your body doesn’t function the way it’s supposed to. That you need help to do something as basic as breathe. That no matter how capable you are, no matter how much you work, no matter how strong your will is, there’s a line your body draws—and you don’t get to negotiate it away.

So I try.

I try not to live as if I’m ill, even though I am. I try to live fully and stubbornly while also carrying the weight of reality in my chest. It’s a strange juxtaposition to exist in, this space between denial and acceptance, between effort and limitation.

And I’ll probably always struggle with it. With myself. With my denial. With an acceptance that hasn’t fully arrived yet.

But here’s what I do know now, in a way I didn’t before: this isn’t about giving up. It’s about fighting smarter. It’s about stopping the performance of being fine and actually doing the unglamorous work of taking care of myself.

Because sarcoidosis doesn’t care how hardworking I am. Heart failure doesn’t clap for my productivity. And a lung that has already popped once—and then popped again—does not respect my schedule.

I’m not resigning myself to the disease. I’m not surrendering. I’m waking up to the reality that being “tough” isn’t the same as being healthy. I can be determined and still be realistic. I can be strong and still be careful. I can be stubborn and still be wise.

And if you’re reading this and you recognize yourself—if you’ve been pushing too hard, downplaying symptoms, trying to be “fine” for everyone else while your body quietly disagrees—please hear me: you don’t have to be Superman.

You don’t have to prove anything.

You don’t have to earn rest by breaking first.

You can take care of yourself now, before your body decides to force the issue in a way you can’t ignore.

Because trust me—when your lung pops, the lesson gets very loud.

If any part of this felt familiar—if you’ve ever lived in “I’m fine” mode while your body kept receipts—I’d love to hear from you. Leave a comment with your experience, and please subscribe so you don’t miss future posts. Chronic illness can be isolating, and I’m trying to build a space where we can be honest, laugh a little, and feel less alone.