What Does a Pulmonary Embolism Feel Like?

What does _anything_ feel like?

There is a Groundhog-Day-icy-puddle kind of trap in business writing: trying to relate real-world experiences back to a business context or a lesson. Let’s fall into it again, the freezing water splashing up our calves. Oh and, as you’ll see, I’m very much not a doctor, and this is not medical advice.

What the blood clot?

Deep vein thrombosis (DVT) is a condition where a blood clot forms in a deep vein, usually in your legs. Imagine a tiny roadblock inside your vascular system, stopping traffic and causing trouble downstream.

Among the behaviors that increase risk of DVT, most are under the broad category of Things You Do At A Bachelor Party That is a 14 Hour Flight Away, and the lifestyle factors include Stressors You Experience When Trying to Keep A Startup Alive During COVID For Several Years.

In DVT poker terms, I don’t exactly have a Royal Flush but I have a strong Three of a Kind, which is often enough to win the pot.

My main memory of my flight back from Korea a couple of weeks back was its unusual and welcome rowdy atmosphere, the post-meal queue for the restrooms eight-deep, with lively conversations across seats and rows between surprised acquaintances in several languages. The question on my mind of exactly how much the concurrent solar storm was increasing our radiation exposure. A period of heavy chop over the Arctic circle, with strapped-in flight attendant saying “No, no, no, no, no, no, no, no, no” urgently and politely to a couple gamely trying to leave their seat amid rollercoaster lurches. But mostly Advil-PM-promoted sleep, and drinking enough water to feel hydrated without having to go to the bathroom twelve times.

A few days afterwards, I develop a dull but persistent ache in my right calf. It feels a bit like a surgeon has forgotten a pencil deep inside my leg. About a 2/10 on the pain scale, depending on how I stand. I remember in the 1990s and early 2000s seeing a rise in public concern about DVT following several high-profile cases where passengers developed clots during or after air travel. Every so often on a flight, a little paranoid ache or pain in my leg makes me think I have it, but would be gone within a few minutes. This time it stays.

I don’t have any of the common symptoms like swelling, redness, bruising in the calf. But I go to the urgent care to see what’s up.

If you want to find out if you have a blood clot somewhere in your body, you do a blood test called a D-Dimer - the name for a piece of protein that's made when a clot dissolves. A high reading will show you have a clot, and a low reading may rule out the presence of a clot. After feeling my calf and noticing no other symptoms, we draw blood for one of these tests.

Pedantic Nomenclature Sidebar: If you have a chronic condition that spouts a multiple of these clots over time, you might say “I have DVT” whereas in my case I can say “I have a DVT”.

The bad thing about a DVT is not so much the DVT itself, but rather the risk that the clot (or a chunk of it) might travel through your bloodstream up to your lungs, where it will lodge and create a pulmonary embolism, which is a Very Bad Thing. If you are unluckier still, there is a chance it travels to your brain and causes a stroke. So the main lesson about DVT(s) is this: Do not get one.

As I am walking out of Greenpoint Avenue station, the doctor calls me. My D-Dimer result is double the normal. So. I definitely have a DVT.

Of course in this moment my pain becomes more severe, and I develop all kinds of strange aches and pinches all around my body, ha! The doctor advises me to go to the ER straight away for an ultrasound. It’s not an ambulance situation, but it’s a get in an Uber now situation. Jose (4.82 rating) and I sit in slow-moving traffic on the BQE while I read about all the ways I might die.

Everyone else in the ER waiting room is on WebMD, and of course so am I. Each time you pull the handle of this magical internet slot machine, you can read a new hypothetical diagnosis based on the exact combination and order of your search terms, e.g. Calf Pain + Headache + General Anxiety = Stroke? Cancer? Just Tired? It’s a perfect stress multiplier for waiting patients.

After three hours and dozens of the same questions over and over again, I am seen by an ultrasound tech. She asks me in detail about the merits of vacationing in Korea as she applies gel and starts scanning down from my groin to my lower leg, sometimes probing and pushing deep into the tissue with the scanner in her favorite hotspots. The machine emits dubstep squawks and howls. As she reaches my calf muscle, I can tell from the change in the pace of her questioning and nature of her attention that she knows she has discovered a DVT, but is obliged to wait for the imaging diagnosis from a remote doctor before saying anything definitive.

A few minutes later, I get my result. I have a small clot right where I thought it was. Luckily it seems like I have caught it early. Thanks, paranoia!

They put me on Eliquis, a blood thinner that I will have to take every day for the next three months. The drug does not eliminate the risk of a pulmonary embolism. It also does not technically break up the clot, but it stops it from getting larger as the body slowly dissolves the clot itself.

The additional risk of blood thinners is that if you (say) hit your head while moving furniture around, you might not stop bleeding, which is a Bad Thing. And bachelor-party-type behaviors are strongly discouraged.

Learning pain from real people

In the Uber home (Miraj, 4.96) I start search phase 2, trying to discover what a pulmonary embolism might really feel like, so that I am forewarned.

This is where the real-life accounts on Reddit are much more useful context for navigating the emotions, concerns, questions and uncertainty that comes with a new diagnosis like this (in addition to your doctor’s advice, of course!). Yes, there is stupidity and quackery. But there is humanity and nuance.

This genre of question — “what does X feel like?” is one that I am fascinated by, and one that only recently has it been possible to answer in volume. When you bring together several people’s accounts, what you find is that there is a real range of experience around a single condition - some people feel nearly nothing, while others experience three or four symptoms at once.

These are all accounts of people who had pulmonary embolism(s):

  • I had a tight chest and was short of breath although it felt like anxiety more than anything

  • A week before my bilateral PEs I felt what felt like a post hard cramp in my calf muscle (it was sore, like after a cramp), all week. Then on Sunday morning I woke up and my calf muscle didn't hurt (yay!) but my resting heart beat was like 100-110 that day.

  • Mine felt like a localized bruised rib. I could feel the inflammation in my lung as every breath I took hurt.

  • It definitely didn’t feel life threatening, which really messed with my head about what is doctor-worthy to check out and what is just normal aches and pains.

  • All of my symptoms were attributed to other things for the week or so leading to my ER visit. I'm overweight, so I initially dismissed the shortness of breath as being out of shape. I'd been eating poorly, so I dismissed the chest pain as indigestion. Poor sleep & sweats? Thought I needed to cut off drinking wine before bed. Headache? Stress from taking care of my folks who'd just gotten covid.

  • Like someone was stabbing me in the left rib cage while someone was stomping on my lung, it's crazy I managed towalked myself into the hospital without doubling over and giving into the pain, not something I wish upon anyone

  • When the D-dimer test came back elevated [my doctor] started FREAKING OUT and told me to get to the ER immediately. I ran a mile that night, really not wanting to believe it. That's when I started coughing up clots, so I knew something was wrong.

Do not do what that last person did. If you feel inclined to dive in further, you’ll find even more variance:

Reading these accounts was a good reminder that everyone feels differently. I was reminded of this further this week during a podcast discussion with a somewhat-discredited journalist about the merits and demerits of Ozempic and other semaglutides. We cannot fully know how others feel, and so it is very difficult to use words like ‘should’ when talking about diet or lifestyle. We cannot know the severity with which someone experiences pain, experiences cravings, experiences withdrawal symptoms, addiction, fear, anxiety, anger.

And so it is with work.

Pain at work

In August 2022, at perhaps the lowest point in the Farm.One saga, I read The River of Consciousness by Oliver Sacks, an author that I had somehow missed reading in depth despite selling hundreds (thousands?) of copies of The Man Who Mistook His Wife for a Hat at my college bookshop job. Reading Consciousness had a startling effect of re-activating my brain from a period of stupor, and made me feel as though there was something new out there to discover, something good.

Sacks’ talent was for capturing rich and charismatic accounts of his and other patients, with long-form prose. He was a great writer. But his work serves an additional mission, adding useful, essential texture and color to a world of medical information that is becoming more and more about data and less and less about human experience:

If one looks at the charts of patients institutionalized in asylums and state hospitals in the 1920s and 1930s, one finds extremely detailed clinical and phenomenological observations, often embedded in narratives of an almost novelistic richness and density (as in the classical descriptions of Kraepelin and others at the turn of the century). With the institution of rigid diagnostic criteria and manuals (the Diagnostic and Statistical Manuals, or DSMs) this richness and detail and phenomenological openness have disappeared, and one finds instead meager notes that give no real picture of the patient or his world but reduce him and his disease to a list of “major” and “minor” diagnostic criteria. Present-day psychiatric charts in hospitals are almost completely devoid of the depth and density of information one finds in the older charts and will be of little use in helping us to bring about the synthesis of neuroscience with psychiatric knowledge that we so need. The “old” case histories and charts, however, will remain invaluable.

Oliver Sacks: The River of Consciousness

Reading Sacks re-activated the memory of one of my favorite startup texts — Founders at Work (2001) by Jessica Livingston, a collection of interviews with founders of “early” tech companies, capturing the raw and unfiltered stories of their early struggles, failures, and triumphs.

One such founder was Mitch Kapor, who created Lotus 1-2-3 — one of the earliest and most popular spreadsheet software products, built on the foundation laid by VisiCalc but offering more advanced features, better performance, and a more user-friendly interface.

We were lucky enough to have Mitch as an early investor in Gengo, and even luckier that he turned out to be a Very Nice and Thoughtful Human Being.

But the reason I mention Founders at Work now is that it captured a moment in Silicon Valley where everything was still new, and it does so using real human voices, not snapshots of data or confident advice from people who are “crushing it” all the time.

There were no management books, no venture capitalists, no conferences, no incubators, no role models. We were figuring it out as we went along.

Mitch Kapor, Founders at Work

If you want to learn about what it’s like to start a startup — or maybe more importantly, the mindset, questions and character of those who have done it, these written accounts are a fantastic place to start. And there is something special about reading them in long form, rather than just grabbing the soundbites from a podcast or a newsletter.

Perhaps the most special thing about Founders at Work is that it captures a pure moment in time where the folks involved did not know anyone else who had started a startup, and had no prior frame of reference for how to behave. Caterina Fake of Flickr relays the experience of her VCs visiting her months after investment, looking at the company’s bank account and realizing that she had not yet spent any of the money!

I mention all this to say - look for the human accounts. Read the full stories. There is value in taking time for something to really sink in. Seek folks who are open and honest enough to tell you how they really felt during their startup journeys (and other travels). Go beyond the soundbites.

Sacks again:

It is not enough to apprehend something, to “get” something, in a flash. The mind must be able to accommodate it, to retain it. The first barrier lies in allowing oneself to encounter new ideas, to create a mental space, a category with potential connection—and then to bring these ideas into full and stable consciousness, to give them conceptual form, holding them in mind even if they contradict one’s existing concepts, beliefs, or categories. This process of accommodation, of spaciousness of mind, is crucial in determining whether an idea or discovery will take hold and bear fruit or whether it will be forgotten, fade, and die without issue.

Oliver Sacks: The River of Consciousness

When reading, drink plenty of water, move around on your flight, wear compression socks if you like, and watch out for calf pain 😉 .

I coach CEOs, founders and executives on how to reach their full potential, become great leaders, and scale strong, impactful companies. It works.

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