21 Oct 2023 I just had a stroke. Wait. What??

The Event

Un­til 9am, it was an un­usu­ally pleas­ant Thursday morn­ing. I woke up in the dark around 5am, got my cyc­ling gear ready, made some toast, and felt an in­tense elec­tric­al pain shoot down my left arm. I’ve nev­er felt any­thing like that, so I paused to see what would hap­pen, be­fore re­act­ing. It faded, leav­ing me a bit wor­ried but oth­er­wise fine. I fin­ished get­ting ready to ride, and headed out in the dark. Maybe that part of this story mattered… maybe it didn’t.

I met friends for the usu­al Thursday morn­ing group bike ride. We had a reas­on­ably fast 90 minute, 30-mile tour of the quiet roads and low hills around Con­cord, fol­lowed by a latte in town. A few spots of pretty hard work on the hills, but noth­ing un­usu­ally in­tense, tons of fun. Ar­riv­ing home, I felt great, ready for the usu­al on­slaught of meet­ings.

Around 9, I very hap­pily dis­covered I had time blocked for a fo­cus peri­od. I star­ted typ­ing up a few notes… and couldn’t type co­her­ently. My fin­gers kept hit­ting the wrong keys. If I tried to type “co­her­ent”, “cwiojwef” came out. I’m an ac­cur­ate, fast typ­ist. I some­times make ty­pos, but noth­ing like that. When I slowed down to type c-o-h-e-r-e, I only got c-x-s-t-f-w. Mov­ing very slowly, I fi­nally got “co­her­ent”. And then the next word was a sim­il­ar dis­aster.

Weird.

I de­cided I hadn’t had enough cof­fee after the ride, and there­fore needed to fit in a fast trip to the loc­al cafe an­oth­er latte be­fore my 10am meet­ing. Like I said, it was an un­usu­ally pleas­ant Thursday morn­ing.

At 10, I had a video con­fer­ence with a few oth­er lead­ers of the Nex­us pro­ject. I was in­tro­duced to someone who had just joined our team. When I said “Great to meet you, wel­come on board, we’re really glad you’re here!”, my mouth said “helll..ooo”.

What on earth? I soun­ded like an idi­ot. Not a way to leave a great first im­pres­sion.

The team star­ted talk­ing about our AI roadmap. They had ques­tions. I had an­swers. The dir­ec­tion seemed ob­vi­ous; we shouldn’t get too ex­cited about AI at this point as we have oth­er pri­or­it­ies in this pro­ject. We should just plan to lever­age what Epic will have by the time we go live, which will be im­mensely dif­fer­ent than what they have now, so we should pay at­ten­tion dur­ing the in­ter­im. I said that. Ex­cept what I said was “we … should …. Wait”. I soun­ded like I was on a delayed au­dio track.

I star­ted to real­ize things were not ok. I tried to say some­thing a few more times as an ex­per­i­ment. It was not my ima­gin­a­tion. My brain was mov­ing ac­cur­ately and pre­cisely at 100mph. My mouth was mov­ing at 5mph and hit­ting potholes.

I star­ted to pan­ic. I had a 100 sim­ul­tan­eous thoughts. “My head seems okay. Maybe I’m wrong. Is it screwed up too?” “These are stroke symp­toms but I feel fine.” “Can the oth­ers tell?” “I would ask them, but I don’t think I can form the words.” “Wow. My job de­pends on me be­ing able to com­mu­nic­ate clearly. I am com­pletely screwed.” “I could use the chat log for the meet­ing. But I can’t type. WAIT, I can’t type!?” “Do I wait for this to pass?”

I star­ted to feel un­steady in my chair, which clinched it. I said, “Hey folks, sorry about this, but I’m not feel­ing right. I need to head out and get this checked out. Please con­tin­ue without me, and I’ll fol­low up after.”

What came out was “Sorrrrrrryy….. I … have… to … go.”

Some­how I made it down­stairs to where my wife was on a Zoom meet­ing in her of­fice. I yelled for help. She looked at me, she got wor­ried, I said some­thing, and that’s all it took. We were off to the Emer­gency Room.

As she drove, I tried to tell her what happened. I de­veloped a strategy of sim­pli­fy­ing words and sen­tences in­to very short phrases. Those mostly got out, with a delay and a slur. I star­ted to won­der if I would be like this for the rest of my life. And how long was that life go­ing to be? Minutes? Hours? Years like this?

Trapped in your head, un­able to re­li­ably com­mu­nic­ate? A hell I would nev­er choose for any­one. There I was.

I’ve es­caped a life-al­ter­ing med­ic­al con­di­tion at least once be­fore, was this one go­ing to get me?

We got to the emer­gency room, and hos­pit­al mode kicked in. Six hours of crazy ER, many tests, an overnight in the hos­pit­al un­der ob­ser­va­tion, many con­sults and I’m back home. I ap­pear 100% healthy. I can talk. I can type. I can walk, run, and ride. I have no symp­toms. I have no ob­vi­ous risk factors. I’m on blood-thin­ning med­ic­a­tion and a heart mon­it­or and I have fol­lowups with car­di­olo­gists and neur­o­lo­gists in the next few weeks. They want me to slow down, take it easy, and stay un­der ob­ser­va­tion. Sure. Of course.

I had a stroke. They don’t know why. It ap­par­ently caused no dam­age. They don’t know why. We don’t know if it will hap­pen again. We don’t really know what I can do to re­duce the odds of it hap­pen­ing.

If it hap­pens again, if it’s even worse, if it sticks… Hell.

Medical Details

Ini­tial as­sess­ment:

• I had slow speech when we checked in the ER. It cleared up over the fol­low­ing 2 hours.
• They reg­u­larly tested me for bi­lat­er­al dis­sym­metry and a col­lec­tion of mo­tor and bal­ance is­sues. Those were fine. We nev­er tested typ­ing. No idea how soon that cleared up.
• CT scans while in the ER: nor­mal
• Ra­di­ology of chest and lungs: nor­mal
• Labs:
  • Blood pres­sure in nor­mal range, des­pite an­noy­ing room­mates
  • Rest­ing heart rate: 45 - reg­u­larly freaked out the nurses
  • High LDL (164.9) - the only risk factor con­sist­ent with a stroke.
  • Nor­mal A1C (5.1) - no dia­betes, nor­mal blood sug­ar
  • BMI Healthy
  • No in­dic­a­tion of AFib or oth­er heart ab­nor­mal­it­ies

The above led to an ini­tial dia­gnos­is of a Tran­si­ent Ischem­ic At­tack.

They kept me overnight for ob­ser­va­tion and to try to get more data on my heart, look­ing for ir­reg­u­lar­it­ies. For full dia­gnos­is of the TIA I needed an MRI to con­firm the lack of dam­age.

• Echo­car­di­o­gram: nor­mal
• MRI in­dic­ated I’d had a non-dam­aging stroke. It con­firmed a right MCA ter­rit­ory front­al in­farct.

The clini­cians were really sur­prised at the MRI res­ults. All the in­dic­at­ors were for a TIA, not a stroke. (I’m not en­tirely sure what the dif­fer­ence is between a non-dam­aging stroke and a TIA… in es­sence, it sounds like the stroke left a re­cord be­hind without hurt­ing any­thing, where­as the TIA would not have had de­tect­able im­pact. But, in prac­tice, this feels very sim­il­ar…)

The the­or­ies for what caused the clot­ting are:

• Pos­sibly cho­les­ter­ol from the LDL. All the clini­cians in­volved thought that was un­likely.
• Un­detec­ted Afib or oth­er heart ab­nor­mal­it­ies that would cause very small clot­ting. No sign of these yet.
• That’s it.
• Ex­cept I’m sug­gest­ing Cov­id, which I had about 4 weeks ago. There are art­icles in the med­ic­al press sug­gest­ing that last­ing ef­fects from Cov­id may in­clude a high­er in­cid­ence of blood clot­ting. No one in the hos­pit­al took this ser­i­ously; we’ll see if it comes up with my fol­low up vis­its. (And this is what caused it, it’s not clear what do to dif­fer­ently, ex­cept be wor­ried about fu­ture clot­ting.)

For treat­ment:

• Plavix, As­pir­in, and Lip­it­or (for the LDL), for the next 3-4 weeks. As­pir­in for life, ‘cause.
• Heart rate mon­it­or, a Zio, for 4 weeks, to try to de­tect ab­nor­mal be­ha­vi­or. It’s very an­noy­ing.
• No re­stric­tions on ex­er­cise, diet, or oth­er activ­it­ies (e.g. driv­ing)
• Go see a car­di­olo­gist to handle the heart side of this, and a neur­o­lo­gist to check in on the brain side of this.
• Go very easy for the next week, cut back on stress­ful activ­it­ies, pay close at­ten­tion to how things are go­ing,.
• Freak out a little.

Maybe that’ll work. Who knows?

A Few Random Observations

• It’s two days later. I’m out of the 48-hour im­me­di­ate post-stroke danger peri­od. I’m in the rest-of-my-life man­age the im­plic­a­tions of this peri­od…. I don’t un­der­stand this peri­od yet.

• Oth­er than the jet lag of spend­ing a sleep­less night in the hos­pit­al, I feel fine. It’s like it didn’t hap­pen… It happened.

• It’s really in­ter­est­ing that my head seemed to be work­ing fine and form­ing clear thoughts, but that they were mangled in two dif­fer­ent ways be­fore those thoughts made it out of my mouth. It’s like the concept for what I wanted to say star­ted in my brain in some lan­guage-neut­ral mode, and then it got trans­lated in­to Eng­lish by some func­tion… and that func­tion con­ver­ted the con­cepts in­to second-grade level words. Then, some oth­er func­tion re­lated to mov­ing my mouth mis­fired, slow­ing and slur­ring the words as they came out, mak­ing that second grader sound drunk. (Yes, I was think­ing about that while it was hap­pen­ing, and I tried some ex­per­i­ments. But I was a little too busy freak­ing out to design good ex­per­i­ments or take good notes.)

• This was my first time as a pa­tient in a hos­pit­al since I’ve star­ted work­ing for a hos­pit­al. They look a little dif­fer­ent when you have some idea of what’s hap­pen­ing be­hind the scenes.

• Hos­pit­al stays are all-con­sum­ing and ex­haust­ing.

• Turns out that there’s a drug that can help re­duce the im­pact of a stroke if ad­min­istered in the first 3 hours of the at­tack. So, if you have a stroke, you want to get to the hos­pit­al as fast as pos­sible and get the course of as­sess­ment and treat­ment go­ing as fast as pos­sible. Many nurses told me, “Don’t wait. Don’t drive your­self. Call 911. They’ll call ahead to get the tests set up”.

• … but does that mean that I have to be with­in 3 hours of a hos­pit­al for the rest of my life?

The Emotional Journey Thus Far

Since I real­ized dur­ing that meet­ing that I Was Not Ok, I’ve been on an emo­tion­al roller coast­er. I think the phases may be best char­ac­ter­ized by the pre­dom­in­ant ques­tion in my head at the time.

All of these emo­tions were colored by pre­vi­ous med­ic­al ex­per­i­ences. I’ve had po­ten­tially life-chan­ging ac­ci­dents. I’ve fought ex­treme back pain for a year and faced the pro­spect of life in a wheel­chair. I’ve had severe work-in­duced stress and made ca­reer de­cisions based on that situ­ation. I’ve spent a lot of time think­ing about life qual­ity bal­ance. Deja vu, with a twist.