Ornoth

Harden My Heart

2025-03-10T19:17:32Z

It’s been five months since my stroke, and four months since my last blogpo about it. But Friday was another big milestone, and well worth another update.

It’s been a long road getting here. My stroke required a four-day hospital stay, and since my discharge, I’ve:

The Amplatzer Talisman Patent Foramen Ovale Occluder!!!

Visited my PCP twice and consulted with him online once
Visited my cardiologist twice
Visited my neurologist once
Visited my hematologist once
Had two lab blood draws and work-ups
Wore a heart monitoring device for a month
Consulted with a nutritionist three times
Had my cardiologist perform an in-hospital procedure called a “TEE test” where a camera was sent down my esophagus to observe the condition of my heart
Had an in-hospital radiologist perform an ultrasound to examine my legs for evidence of blood clots

At least that’s the ones I remember, and that doesn’t include another dozen-odd phone calls and emails, plus lots of wrangling with my insurance company over coverage and claims. Fun times!

All that work was intended to determine why my stroke occurred. But it didn’t.

In cases where there’s no smoking gun, cardiologists look at a specific feature of the heart called the foramen ovale. That’s a small hole between the heart’s two atria that allows blood to bypass going to the lungs before a unborn child begins breathing on its own. After birth, that opening usually closes and fuses shut.

But for one in four adults, that opening doesn’t fully close, which allows a small amount of unoxygenated blood returning to the heart through the veins to bypass the lungs and go straight back into the blood stream to the rest of the body. For most people, this isn’t a problem, but if a blood clot sneaks through that side door and travels to the brain, it can cause a stroke. So it’s one of the things that cardiologists look for when an otherwise healthy person has an unexplainable stroke.

Needless to say, that TEE test I had confirmed that hole in my heart, called a “patent foramen ovale”, or PFO. Ideally, if one could seal that opening between two chambers of the heart, it would prevent any possibility of that defect causing another stroke.

Amazingly, not only is PFO closure something modern medicine can actually do, but it’s considered low-risk and pretty routine. A thin catheter is inserted into the major femoral vein in the groin and up that vein directly into the heart itself. A collapsable metal device – it kind of reminds me of a mesh kitchen strainer – is sent through the catheter and deployed inside that hole, sealing it shut. Visually, it’s like a disc the size of a dime on one side of the opening, and another the size of a quarter on the other side, connected by a very short rod in the middle. See the goddamned photo (it’s not my favorite thing to look at, I’m afraid).

In order to ensure this all goes well, a second catheter – this one bearing a microscopic camera – is threaded up the femoral vein on the other side of the groin. And in my case I think a second camera was sent in through my arm, as well. Throw in an IV for fluids and anesthesia, and that’s a whole lotta jabs!

As I say, this is now considered pretty low-risk and routine. Patients are usually walking and sent home a couple hours later, and I was apparently the third PFO closure that my cardiologist had scheduled that day.

But from the patient’s (my) point of view, having a chunk of metal surgically implanted permanently inside my heart isn’t something I’d consider “routine”!

So leading up to Friday’s procedure, I had a fair share of anxiety about heart surgery and metal implants. It sounded like a whole lot of expense and effort just to reduce my chances of a stroke, especially when there was no clear evidence that this is what caused mine. I’ve been blessed to have never relied on the medical industry very much, so my nerves were pretty highly activated in the lead-up to my surgery.

Fortunately, I had my partner Inna to lean on, plus a number of friends who took an interest and expressed empathy and compassion, including but certainly not limited to Carolyn, Helen, Sally, Robie, Rhonda, Ben, and some of my PMC riding buddies. I might be going through some medical trauma, but I didn’t feel like I was doing it all alone, and that made a huge difference.

Happily, the procedure seems to have gone well, at least from the perspective of a couple days post-op. So now my concerns and preoccupations are focused primarily on the somewhat-involved process of recuperation.

Short-term, I’ve got some annoying restrictions, mostly so I don’t rip open those incisions into major veins. That means no driving, no flying, no lifting, and virtually no exercise. Those restrictions will ease over the coming weeks, but this will curtail and require a major reset for both my cycling and my kyūdō practice. For more on how this operation will impact my cycling, see the companion post on my cycling blog.

So for now I’ll be getting back some free time, which will be put to use catching up on some low-priority projects that I’ve deferred for ages: things like revising several bits of old computer code I rely on, cleaning up my personal online archives, and the like.

From a cardiac perspective, the most important short-term concern is to rabidly guard against any possible infections that might lead to endocarditis. Not only does that mean frequent washing with antibacterial soap, but more aggressive precautions. I’m literally not allowed to see a dentist for at least 6 months, and will need to take antibiotics before every dental appointment – even just cleanings! – for the rest of my life!

And of course there’ll be more medical followups. At minimum there’ll be another cardiac ultrasound to verify the work, plus followup meetings with my cardiologist and PCP.

But things seem under control at the moment, and hopefully I’ll be making a full recovery, after giving things a month or two (or six) to properly heal. And now I look forward to getting back to posting some less dramatic and more typical content!

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The Duke of Mentality

2024-11-13T22:22:28Z

I’ve always been a little – sometimes a lot – older than the friends I hang around with. So I figure some folks might be wondering how it’s going following my recent stroke… What it’s like to live with the realization that a portion of my brain is, literally, dead.

The most pertinent fact is that my stroke is over. Actually, it was probably over by the time the EMTs showed up, but then there was the whole diagnosis and treatment protocol and investigation and followup plan. But now, six weeks later, that episode is as much a piece of history as my first driving test.

Physically, I’d like to say that I have no lingering aftereffects. Sensation returned to my left hand over the first 48 hours, and that numbness had been the only significant aftereffect.

The psychological impact was more lasting, manifesting in several flavors that’ll fill the balance of this blogpo.

Betrayal

Easily the most prominent emotion has been the feeling that I was betrayed by my body. For sixty years, I knew in my bones that my body could thrive and succeed no matter what outrageous demands I placed on it. Eating like a 14 year old? No problem. Bike 150 miles in a single day? Piece of cake! Going out drinking and nightclubbing until 4am and getting up at 6am to facilitate meetings with Fortune 500 clients? Easy-peasy! Work 80 to 120 hours per week for nine months straight on a death march project? BTDT.

But completely out of the blue one morning, the body I’ve relied upon all my life suddenly betrayed me, with no warning, while doing nothing more strenuous than walking down a staircase, something I do dozens of times every day.

I can’t tell you how much of a shock that was. I’ve been through the classic responses: anger, grief, bargaining. The only one I missed was denial, because it just wasn’t possible to ignore.

Mistrust

Trust, once broken, is difficult to restore.

Even after the hospital sent me home, I didn’t feel that I could just go back to a normal life. Even though that episode was over, I didn’t trust that I wasn’t still in imminent danger. I still felt that I had to stay vigilant, on guard against anything that might come up, even though I know that I’m not in full or direct control of my body’s health. Once bitten, twice shy.

Hyper-awareness

Because of that, I’ve been hyper-aware of every little niggle that arises… and in a 61 year old body, there are plenty of them.

I have developed some neuropathy in my feet, and any time a body part “falls asleep” sets off stroke alarms in my head. And that pain in my armpit: could that be a lymphoma? The stitch in my side kinda feels like a kidney stone, or maybe diverticulitis. The pain in the opposite side is probably pancreatic cancer, or maybe just liver failure. And my chest pains might be a symptom of atrial fibrillation, which is a huge risk factor for stroke.

I’m not normally prone to hypochondria, but nor am I used to waking up one morning and having a stroke. Even after consulting my physician, I can’t say for certain whether all these maladies are complete fiction, or real but minor discomforts, or something far worse.

Fear

What does the future hold? How much longer will I live? The truth is that I have almost no information and very limited influence.

That’s hard. It’s a cause for anxiety, uncertainty, and unease. In a word: fear. Raw existential dread. Not something I’ve ever had to face directly, so it’s one of those unpleasant “learning experiences”.

During the day, there’s enough stuff going on to distract me from all this, but the fears are more insistent at night. Keeping one’s imagination in check is a full-time job!

Living a normal life in this midst of all this is not easy! But then, what’s the alternative?

Fortunately, every morning I get up and notice that I don’t appear to be fatally ill. And after six weeks of evidence to the contrary, my worst fears have weakened to the point where life has started to feel normal again.

Coping

What helps? Good question.

Has my longstanding meditation practice helped? Somewhat. Meditation taught me how to distinguish between skillful thoughts and unskillful thoughts as they arise; that I don’t need to give full credence to everything a fearful mind envisions; and how to short-circuit the mental proliferation that can fuel unnecessary fear about the future. It also allows me to see that my moods and emotions are intensely charged interpretations of one possible future – not reality itself – and that they are essentially both transitory and empty of real substance.

That doesn’t mean that I’m able to dispel all my fears, especially in the dark, lonely silence of a late night, with nothing to think about other than my body, its ephemeral nature, and its treacherous sensations.

The thing that seems to help most is the simple passage of time. As I mentioned above, day after day, the worst case scenario doesn’t seem to happen. And that data has slowly piled up into an irrefutable conclusion that I seem to be mostly okay, at least in this moment.

Not that I feel like I can trust that just yet. But it does seem more and more plausible as each day goes by.

Conclusion

I am subject to aging. I am subject to sickness. I am subject to death.

These irrefutable truths are hard to face, and they’re a rude awakening that every one of us will have to come to terms with, at a time and in a manner we do not control. And this society does a shitty job preparing people for this immense challenge.

I’ve had a conceptual understanding of these truths since my sister died following a stroke fifty years ago. In my life, they’ve been reminders of the preciousness of life. Now they’re more omens about the precariousness of life. My life. My very finite life.

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Stroke of Misfortune

2024-10-09T16:48:10Z

The following text was composed in my hospital room, 72 hours after my episode, and shortly before my discharge home. Be warned that you might not want to read this at night, alone, or if you're prone to existential dread. Sorree!

I had a stroke.

I can't possibly begin to communicate what those four words mean to me.

I used to have an older sister named Martha. When she was 21 years old, she was newly married and a brand new mother. One night, in the middle of the night, she had a stroke and fell into a coma. She was placed on a respirator, and her husband and my parents were in the terrible situation of making the ultimate decision.

At the time I was only nine years old, but the loss of my sister left a deep permanent impression. I can't imagine what it was like for her to wake up in the middle of the night and what she went through. Nor can I imagine what her husband went through that night. Since then, I can’t count how many nights I’ve layed awake, next to my sleeping partner, with the horror of that memory playing through my mind.

I also had a grandmother, who after her stroke was left perfectly lucid, but anytime she tried to speak, all that would come out is, "Beh beh beh beh." Stroke is sudden, unpredictable, and absolutely devastating.

Those fearsome memories come back to me very often both in the day and the dark nights when I'm awake alone. So I've always been highly sensitized about stroke: its symptoms and causes, its devastating effects, and how vanishingly quickly life can change or be entirely snuffed out at complete random.

I can't describe to you the visceral horror that stroke has been throughout my life. It has always been my biggest dread of all.

I had a stroke.

The good news -- that you all want to hear -- is that somehow, miraculously, mine was vanishingly small, and at this very early point in my recovery, it seems likely that I will regain full functionality. So in a sense, I'm okay.

That doesn't mean that I will continue to be okay, or that I can simply resume living my life as if I hadn't had a stroke at all. For the first time I will be on long-term meds: blood thinners and statins, which have unpleasant side effects. And there's going to be a whole battery of follow-up tests and procedures. Although stroke symptoms last a long time, both recovery and the risk of recurrence can last years. It will take time to see if and how I can resume all the activities that I used to do, including cycling and kyūdō. And I'm finally going to have to start eating and hydrating like an adult.

For now, although I appear mostly okay physically, I can't begin to describe the mental and emotional impact on someone who was sensitized to stroke as a child. If you've survived one stroke, you're much more prone to have subsequent ones. That has doubled the dread that I've always felt and tried to manage.

In my meditation practice and in my personal philosophy, I've often referred back to my sister's death as the thing that defined my relationship with life and death. Her passing taught me at a very young age that death is very, very real; that it will take every one of us; and it can come without any warning at any time, no matter how healthily we live. That has been the justification for my attitude of enjoying every day as much as possible, realizing how precious and ephemeral each moment of life truly is. I've always considered it a blessing to have learned that lesson so early in life.

Of course, acknowledging death is a completely different thing when it's happening to you, when the proximity of death is part of your present-moment reality. And now I somehow have to figure out how to cope with this sudden increase in dread for the rest of my days, however many or few remain. It's hard. And it's inescapable. And it’s final.

Of course I'm thankful that for now I'm recovering well. Throughout my life, in many ways I've been incredibly lucky that things always worked out well for me. And I guess I have to thank my luck as well for this dreadfully ominous warning being such a benign episode. My stroke could very, very, very easily have resulted in major disability or death. So I'm incredibly appreciative of my miraculous good fortune... at least this time.

And I have the deepest, most heartfelt gratitude for the caring presence of my life partner Inna. She is the irreplaceable foundation of my life. But I’m also concerned about what'll happen when either one of us dies, since we're so dependent on each other. So to my many friends: if I were ever to predecease her, my dearest desire would be for those of you who care about me to reach out and offer your friendship and support to Inna: the most important person in my life, and the person whose life would be most impacted by my passing.

Having said all that, I don't have much of a way to end this post on a positive note. Facing one's own mortality is grim work. It’s very easy to face toward life and be thankful, joyous, and share as much love as one possibly can. But it's also wise to see, know, and come to terms with what the ultimate future holds for all of us. And now that death has gently tapped me on the shoulder and gotten my attention, it's time to start taking my own mortality very seriously.

With a heart and mind full of love, joy, and dread.

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