What a Pulmonary Embolism Actually Feels Like (From Someone Whose Doctor Said "Too Many to Count")

There is a nurse somewhere I will never see again who cried at my bedside.

She was hooking me up to the EKG machine while a doctor in the corner of the trauma room told her, "He is not having a heart attack." But she was looking at my chart. She had already seen what was about to happen to me, and she was trying not to let me see her face.

I told her, "I do not want to worry you. But I think I am having my first heart attack."

She started crying.

The pain hit my heart the second the heparin entered the IV. It felt like a knife. Like someone driving a blade straight into my chest from the inside. I remember thinking, "I cannot close my eyes. If I close my eyes, I might not wake up."

This is what a pulmonary embolism actually feels like. The medical sites cannot write this article because they have never been inside one. I have. I almost did not survive it. This is what nobody told me — and what I wish someone had.

How It Started (Overnight)

Mine did not come on slowly. It hit overnight.

One day I drank my coffee like any other morning. The next day I could not eat anything without getting sick. My face flushed. My nose turned red. My ears burned. My stomach hurt. My chest hurt. It looked like an allergic reaction to someone who did not know any better — and at first, that included me.

In a few weeks, I lost 40 pounds. I was living on water and Sprite. I was passing out at home.

The first time I went to the ER, my blood pressure was 220 over 116. I had to beg for blood pressure medication.

They sent me home.

The 4 ER Visits That Almost Killed Me

I went back to that ER three more times. Sick as a dog. Each visit. Each time, they sent me home.

Once, they told me my stomach pain meant I needed a colonoscopy. So I scheduled one. I went through with it. The GI doctor told me everything was fine.

I told him, "I assure you, it is not."

He told me to go back to the ER.

I told him, "The ER sent me to you."

This is what happens when the system does not have a box for what is wrong with you. They pass you. Doctor to doctor. ER to specialist back to ER. Each visit, somebody else's problem. Each visit, you get a little closer to dead.

What a Pulmonary Embolism Actually Feels Like

The medical sites will give you the symptom list. Shortness of breath. Chest pain. Coughing. Rapid heart rate. Sense of doom.

Here is what those words do not capture.

My chest felt heavy in a way I had never felt before. Not heavy from a meal. Not heavy from exertion. Heavy like something was sitting on me that would not get up.

I could not get a full breath of air. Not once. Every breath was a partial breath. The next breath was a partial breath. The breath after that was a partial breath. There was no relief.

The clearest way I can describe it:

It felt like a belt was wrapped around my chest and someone was tightening the belt one notch at a time. Every hour, another notch. Every day, another notch. And no one would take the belt off.

The chest pain came in spikes. Sharp ones. The kind that make you stop walking and put a hand on the wall.

The "sense of doom" the medical literature mentions is real. It is also a useless phrase. What it feels like is your body knowing something your brain has not figured out yet. The body knows you are dying. The brain is still trying to argue with the body.

The Day They Finally Found It

The fourth ER visit, the doctor looked at my chart. Three visits in seven days. He ordered a CT with contrast.

I went back to the waiting room. Hours passed.

Then the results came back.

Then everything went into a mad dash. They moved me from the waiting room back to a trauma room. Seven nurses swarmed my bedside. Nobody was telling me what was going on. They were too busy hooking me up to machines and IV lines.

That is when they started the heparin.

That is when the nurse cried.

I learned later what the CT showed. Clots in both of my lungs. More clots in my leg. More in my neck. More in my arm. My hematologist was the one I eventually asked: "How many clots in my lungs?"

The Nurse Who Cried

That nurse stayed with me through the heparin moment. The doctor told her I was not having a heart attack. The numbers on the EKG agreed with him. But her face did not.

She kept working. She kept her voice steady. The worry in her eyes was the part she could not hide.

I told her I was sorry for scaring her.

She told me to keep my eyes open.

Every time I went back to that ER after that night, the nurses who had been there came to check on me. Different shifts. Different patients in their rooms. They would walk past my door and stop. They wanted to see how I was doing.

I became a kind of unspoken story on that floor — someone who survived when he should not have. Almost a celebrity, in the way only people who have seen the worst in their job can recognize.

That is the part the medical literature will never tell you. The part where the people who saw your numbers know what those numbers meant. The part where they are still surprised, months later, to see you walk in alive.

When the BP Cuff Came Off

After the heparin, they took me for a vein scan.

When they brought me back to the room, the technician unhooked the blood pressure cuff and said, "I am not going to put the blood pressure cuff back on you."

That was the moment I knew it was bad.

Corrine looked at me. She did not have to say anything. She said it anyway.

"It must be worse than we know. You must have blood clots in other places."

She was right.

That is the moment I understood that I had stopped being a patient with a problem and become a patient who might not make the night.

Doesn't Matter. Too Many to Count.

The numbers I remember from that hospitalization:

My pulse was in the 30s constantly. Not 70s. Not 60s. The 30s.

My respirations dropped into the single digits. I was breathing five, six times a minute when I was drifting off.

The nurses came running into my room at night. I did not know this at the time because I was barely awake — Corrine told me later. Every time my breathing dropped low enough to set off the monitor, they came running. I would be starting to fall asleep, and the running footsteps would wake me up before the alarm did.

I was scared to close my eyes.

When I asked my hematologist later how many clots were actually in my lungs, he gave me the line I will never forget. "Doesn't matter. Too many to count."

That is what should have killed me. That is what almost did.

Surviving When My Sister Didn't

A blood clot killed my younger sister Christy.

A blood clot — actually, more than I can count — almost killed me.

If you are reading this from your own hospital room, or from the chair beside someone else's hospital bed, that line is for you too. You do not have to know why you survived. You just have to decide what you are going to do with the survival.

The Belt Never Fully Loosens

Four years later, I am still here.

I have accepted that I will never be the old version of myself. The body I had before the clots is not coming back. The lungs that worked without me thinking about them are gone. I think about every breath now in a way I did not before.

I take blood thinners every day. I monitor my blood pressure constantly. I know my baseline numbers cold. I know what "normal" looks like for me, which is not the same as a normal for someone who has never had a clot.

I also know I have to keep going. Keep walking. Keep my mind sharp. Keep moving forward. The day I stop doing all of that is the day the diagnosis wins. And I do not like to lose.

The belt does not fully come off after a pulmonary embolism. It just stops tightening. Some days that is enough.

That is the truth about life after a PE. Not the resolution most people want to hear. The truth.

From that hospital bed, I started rebuilding. I learned to live on two hours of usable energy a day. I built systems that could run when my body could not. That story is here. The clots did not get the last word. They got a chapter.

If Your ER Sent You Home and Something Still Feels Wrong

Four ER visits.

That is how many it took for someone to find what was killing me.

If you are sick and your ER has sent you home and your body keeps telling you something is wrong, here is what I learned the hard way:

1. Go back. Same hospital. Same ER if you have to. A different shift is better if you can manage it.
2. Bring an advocate. Spouse. Parent. Friend. Anyone willing to stand at the desk and not leave when they try to send you home.
3. Demand a CT scan with contrast if you have chest pain, shortness of breath, leg swelling or pain, or unexplained blood pressure spikes.
4. Track your numbers. Bring written records. Heart rate, BP, oxygen saturation if you have a pulse ox at home, weight loss, dates of every previous visit.
5. Tell them what other doctors said. If a specialist sent you back to the ER, say it. Make them respond to it.
6. Tell them your family history. If you have a family history of blood clots — and especially if a sibling has died from one — say it out loud, on every visit, to every triage nurse, every doctor.

I do not say this to scare anyone. I say it because I almost died waiting for somebody to do the right test. You should not have to.

Four Years After

I am writing this on the four-year mark of the year that almost ended me.

If you are in the middle of your own version of this, I want you to know I see you. I know what the belt feels like. I know what it feels like when no one believes you. I know what it feels like when someone you love dies from the thing you are now fighting.

The hardest thing you survive is also the most valuable thing you carry.