My Invincible Summer
This summer, I was the victim, detective, and judge in my own murder mystery. The killer was a stroke.
You’ve likely heard me describe my summer as a Netflix murder mystery set in a small town. In this series, I was the victim, the detective, and then the judge. The killer, as you know, was a stroke — my second stroke in the past three years. Luckily, it was just an attempted murder.
I realize I haven’t told the full story. Clips and photos and captions online have not done the job. I learned this when one of my closest friends recently said she had no idea I was now a bionic woman. Another asked if they ever figured out what was wrong with me.
They did! Well, we all did. I was a significant component of the “they.”
My story is a long one — it really was a heck of a summer! And though I’ve done my best to spare you the nuanced details, I decided to share it all. I wanted to show you how painstaking every decision was, how necessary it is to be your own advocate, and how medicine can sometimes be a mystery.
You’ve probably heard the story of my first stroke by now.
I had a stroke in December of 2013. I was 30. I wrote an essay about what it felt like to have a stroke here on Medium. The cause of the stroke was attributed to a tiny tear in my carotid artery — an artery of the neck that supplies blood to the brain. A blood clot formed at the location of the tear, broke off, traveled to the brain, and blocked off the brain’s blood supply which caused part of my brain to die.
We didn’t identify how I hurt my neck; it’s a pretty common cause of stroke in young people and it can happen from just about any activity. But I anecdotally attributed it to sleeping funny on a flight a few days earlier, letting my head hang too far to one side. I remembered even thinking during my 3o minute nap, I wonder how far you can stretch your neck and it’s okay. True story.
When the stroke happened, I thought I might be paralyzed forever. But after three days of treatment in the ICU, I was back to life as normal — with the exception of being careful of my neck, of course. I regarded the whole thing as a wild fluke and simply celebrated my “Strokeversary” each year, returning to Huntington Beach where I had surfed that fateful day. Today! December 22. Happy Strokeversary to me.
But now I get to celebrate twice a year, December 22 and June 1. Because, just as unexpectedly as the first, I had another stroke this year.
I wasn’t supposed to have another one; I thought we caught the killer the first time. But it turned out we might have gotten the wrong guy. When I was hospitalized this year, new doctors reviewed my previous scans and disagreed with the assessment of the tear in my neck. And then they discharged me from the hospital without a definite answer for why I had either stroke. My whole health was now in question.
Cryptogenic stroke is what they call this, a fancy term for stroke without an identifiable cause. And it requires an intense and complex investigation into one’s health. I was surprised to learn that I had to be the one to lead that investigation.
So began my Invincible Summer.
I put aside my role of CEO of my ice cream business MilkMade, a huge bummer as it was our busiest season, and I took on the required role of my own medical detective.
It truly was a race to catch the killer before he struck again. The fear of another stroke was palpable–every day felt tense, every sleep was restless. I no longer trusted my body; any pain, strange feeling, or headache put me on high alert. Who knows what’s going on in there!? I halted my normal active lifestyle and I even tried to stop bending over; both strokes had occurred while bending at the waist.
I knew that something needed to be done immediately so that I wasn’t living in constant fear of having another stroke amidst the mystery. So I elected to take a heavy anticoagulant drug (Pradaxa) which would ensure clots could not form in my blood. Pradaxa is prone to spontaneous bleeding in the brain, GI bleeding, and can also produce excessive bleeding upon injury. I had to choose between potentially having another stroke or potentially bleeding to death, a strange decision for one to make. I decided that avoiding the former took priority.
The job was all consuming. It was nuanced and intricate. And every day was enough for a new episode in my Netflix series. And to be totally honest, it sucked. (I say this, however, with complete awareness that everyone has it hard, that I had every force on my side, and that it could have been far, far worse.)
It opened my eyes to how difficult it is to be an active advocate for your own health. But more so, how necessary it is, whether enduring a saga like mine or just every day. The business lady that I am, I refer to it as being the “CEO of your health.” It’s a role I now implore everyone to take.
I wasn’t alone in my investigation, though. I had my father. He’s a pulmonologist and a critical care physician. He was my right hand, my dear Watson, and was as maniacal as I was about this, phoning in from California daily with his own research and clues. Or sometimes it was just a text for inspiration — a song on the radio that spoke to him (“Rise Above This” by Seether). Or a QOTD, my favorite of which I’ve shared below.
Fate whispers to the warrior, “You cannot withstand the storm.” And the warrior whispers back, “I am the storm.”
And I had my detective unit. I sought out the best doctors that I could find in the New York area — neurologists, cardiologists, hematologists, vascular surgeons, interventional neuroradiologists, gynecologists. I saw a total of 17 of them on numerous occasions this summer, selecting a core 5 for my team. They were amazing. I had their cell phones and emails and could contact them with any question. It’s probably not what most of us expect from our doctors. Maybe it’s because I am young and vibrant, or maybe because I had such a unique situation — a 33 year-old with two strokes?! But more likely, it’s because I was not what they expect from their patients. I had educated myself enough to communicate on their level (well, almost) and I played an active, advocated role in my own case.
But although everyone was on my side, the system was not. There were season-long waitlists for first-time consultations. There were miscommunicated pre-certs and approvals that sent me on wild goose chases all too often. There were insurance denials, like the bill for an $88,000 angiogram that came to me, or the letter from Blue Cross that deemed the treatment for my stroke “not medically necessary.” Not medically necessary?!
And then there were my medical records. See, my detective unit hailed from different medical facilities around the city, so the onus of sharing information among them was on me. That meant copying files, requesting CDs of my scans, burning them (thank goodness for that old computer I saved), and sharing them among incompatible programs. It sounds easy, but it’s not. It’s a painfully archaic system. And it seems intended to be prohibitive for patients to get access to their own information. On top of it all, charges can get up to $20 for a CD and $1 per page of records. What a racket! (I’ll tell you a secret, though: I never paid a dime. I always argued my way out of it. On principle! It’s my damn body, after all!)
The investigation required a deep dig into my health — the aim was to find where the blood clot had originated, and how it made its way to my brain. And everyone (I mean everyone) was a suspect, from the most common to the most obscure. We looked at my heart, my brain, my neck, my veins, my arteries, and my blood. And day by day, MRI by MRI, blood test by blood test, we eliminated them from the lineup.
It began with a heart monitor which I wore for a month to rule out any arrhythmias which can cause blood clots. The monitor was cumbersome, caused welts on my skin, and served as a constant reminder of my pathetic, flawed self. But it eventually grew on me and served as my armor, a reminder of my invincibility. You’ve probably seen the photoshoot my boyfriend Naveen did of me with it — cardiac glam, as my mom called it.
Next was bloodwork: dozens of tests to assess the clotting mechanisms of my blood and any diseases related to stroke. Then a repeat of most of them as many were inconclusive. Joy.
Then were the MRIs. I already had numerous MRIs while hospitalized, but now I needed one of my kidney to look for a rare disease of the arteries and one for my pelvis to look for any blood clots deep in my veins. MRIs are not fun, but I made the best of them. I’d imagine little gnomes inside banging their hammers at different beats, just workin’ away. Sometimes I was at an EDM party. Other times, a journey through space.
I began to reward myself for every day I had a needle in my arm with dinner at my favorite Italian spot in SoHo. It was so often that they now know me by name. I’d sit at the bar alone or with Naveen, recording the notes from the day and putting the clues together. It really was an everyday job.
Then there was the heart itself. This part is important. We knew I had a hole my heart. It was revealed during my first stroke in 2013. Don’t be shocked — 25% of people have it. One in four of you reading this have one. We are all born with it; it’s how our blood flows through our body in utero. But when the lungs take over at birth, it’s no longer needed and typically closes up. It’s called a PFO (patent foramen ovale). For most who have it, it does not present a problem. But sometimes the hole allows blood to pass through, and if that blood has a clot (even the tiny clots that the blood forms and breaks down all the time), it can travel to the brain and cause a stroke.
A test after my first stroke in 2013 showed my PFO didn’t allow much blood to pass through it. So we kept doing tests, and that’s when the tear in my neck was discovered. When I had a second stroke, however, the immediate and unanimous thought was that I couldn’t possibly have had two obscure tears in my neck and the PFO should be examined again. Through a very uncomfortable invasive test including anesthesia and a camera probed down my throat.
But the tear in the neck wasn’t totally ruled out. There was something remarkable that kept the tear in the lineup. Both strokes had ended up in the same part of my brain. The way our anatomy works, the clots would have had to come from the same pipe to end up in the same spot in the brain (ie, my carotid artery). We really were putting all the clues together. So I had to have another test of my neck to be sure — one where they cut at my pelvis, insert a catheter up to my neck, and inject dye in my arteries while taking MRI scans of my head and neck. It detects any abnormalities in my arteries. Medicine is magic.
The tests results came back one by one, week by week, and they often caused quite a stir. Naveen would quote The Fall: “Mum, we have a new development.” By now I was not only living a Netflix murder mystery, but I had taken to spending my sobering evenings watching them all. TV is not a typical habit for a workaholic like me, but the escape into someone else’s world was welcomed. At times I identified with the detective, like in The Fall — cunning and shrewd, with confidence that I’d catch the killer. Other times I was the mourning family, like in Broadchurch — please just catch him so we can put this case to rest and move on with our lives!
The test results were surprising. It felt like a game of Clue with every new piece of evidence. Aha! It was Miss Scarlet in the library with the candlestick! The scan of the neck showed no tear and even provided evidence to conclude I probably never had a tear the first time.
The heart exam showed more flow of blood through the hole in my heart, enough to allow a clot to pass through and cause a stroke.
And, as is likely when you dig deep into anyone’s health, a few other problems were revealed with mine: a blood polymorphism and a “syndrome” in my pelvic vein, both associated with clotting.
Taking it all into account, we had our culprit. The real killer was the PFO. The hole in my heart had let a clot pass through which traveled to my brain and got stuck in a vessel. It blocked off normal blood flow and caused part of my brain to die. Twice.
So what gives? How did we catch the wrong guy? How did we think the tear was the killer? Well, first of all, interpretation of x-rays is sometimes subjective; even expert radiologists can disagree. And when no other suspects remained in 2013, a tiny abnormality that looked like a tear made sense.
And how did we miss the PFO the first time? Sometimes, the same procedure on different days can produce different results. Such is medicine — it exists in a world of possibilities, not certainties.
It was summer’s end when the case was closed. We had gotten the wrong guy! I probably never had a tear in my neck. The PFO was the killer all along.
But the story is not over — I now became the Judge.
I had to decide how to sentence my convict. And I found myself in the throes of modern medicine, forced to choose a side of an ongoing and inconclusive study: to close the hole in my heart, or not to close the hole in my heart.
Closing it would require a procedure to implant a device into the heart to seal the hole. Not closing it would require long term heavy anticoagulant medication like the one I was on this summer. Damned if you do, damned if you don’t — I wanted neither of those outcomes.
To further complicate the debate, there is no conclusive data that supports one over the other for preventing future stroke. There is no right answer. It is currently a debate in the stroke world (the RESPECT trial if you’re interested).
Despite that, there are vocal proponents on each side. I sought them out. I read the research. I talked to stroke friends about their experience. I asked all on my detective unit what they would do. Reviews were mixed.
Going into this case, I feared I might come to this crossroad. Just weeks into the investigation as those obscure test results starting coming back, my father even texted me, “If you ask me it’s not Colonel Mustard or Mrs Peacock, it’s the PFO and I have a feeling that eventually we’re going to have to close the door.”
I was initially adamant about not implanting a device into my heart. I mean, for obvious reasons. But also, previous implant devices had been recalled because of serious malfunctions — erosion, promoting AFib, and even causing death. Plus, they’d only been doing this procedure for about 20 years and I hoped to live for another 60!
But my decision was made as soon as the cardiologist showed me the results from the PFO test (the TEE exam) and I saw, with my own eyes, blood pass through my hole in the heart. At any time, that blood could contain a clot that would cause another stroke, and my brain could not afford more damage. I knew I’d been lucky so far with my two strokes. Three strokes, and I might be out.
So we closed the door. I had the surgery.
I was given the option to stay awake during the procedure, and I took it. A once in a lifetime opportunity, after all! It was like a science-fiction magic show; it took no more than 20 minutes. On surround screens of an x-ray of my chest and an ultrasound catheter in my heart, I watched as the device was implanted into my heart.
Then, as if a scene from the Twilight Zone, the doctors exited to do their post-operative work and I was left alone, lying on the bed in the middle of the huge operating room. The x-ray was still on, projecting onto the big screen my ribs, my vertebrae, and now something new. In the middle was this round, wire device that oscillated with every beat of my heart. Back and forth. Back and forth. I had become a bionic woman.
If you’re a friend of mine, you’ve likely heard me despondently refer to this summer more often as “The Lost Summer”. But I was recently reminded of this quote:
“In the depth of winter, I found there was, within me, an invincible summer. And that makes me happy. For it says that no matter how hard the world pushes against me, within me, there’s something stronger — something better, pushing right back.” — Albert Camus
