orasfarasiget

[orasfarasiget]

Back to normal, ho-hum life.

I'd neglected to write about it, but the last couple of weeks before the surgery, anticipating the worst, I was walking around in wondrous appreciation of the beauty of the world and my joy in being in it. A truly marvelous feeling! And the marvelousness of that feeling made me wonder why that seemed only to be available to me at times when I doubted that my life would continue as it had been. Indeed, the feeling reminded me very much of the last time I had had that feeling so strongly. It was a few years ago when I was on a solo ride along the Danube and went blind in my left eye due to a retinal separation (now almost-fully repaired surgically). Here's a link to the post about that event: https://orasfarasiget.com/post/93387512704/a-problem-arises-continued.

As I re-read that post I realize that I didn't sufficiently emphasize just how joyful that 30 km ride from Esztergom to Visegrad was. The whole time I was thinking, 'I might not get my vision back in that eye, this might be my last bike trip' - and that thought, that I couldn't take for granted any of this beauty and my enjoyment of it, that all of it will certainly end at some point, perhaps even very shortly - that thought gave me the most wonderful feeling of appreciation.

And now that my life is slowly returning to normal, that I no longer feel threatened by the surgery and the concomitant awareness of my mortality has receded, I am falling back into a ho-hum, hum-drum life. Not that I'm not enjoying myself, I am, but that feeling that this could be my last day, my last moments, that's gone, and the great thrill that came with that is also sadly gone.

[orasfarasiget]

My heart has migrated!

Six weeks after the surgery, I had my first post-op visit with my cardiologist. He was pleased with what he saw and heard, said my recovery was going very well, and asked if I had any concerns. I told him I was feeling better each week, and that the only thing bothering me was the loudness of my heartbeat and how it seemed sometimes, particularly at night as I was going to sleep, that its beating was actually moving my body. He told me that after this surgery the heart frequently migrates forward to the ribs and attaches there with scar tissue, and that this new placement of the heart makes its beating feel different and louder - "but over time you will acclimate to it and won't notice it anymore." That has come true and the beat no longer seems too loud or prominent, but the idea of my heart having migrated to a new place in my chest, that I do still find kind of freaky.

[orasfarasiget]

A little celebration

This week I had my first post-op medical appointment. It was with my primary care provider who, 6 years ago when I came to her as a new patient, noticed that I hadn’t had an echocardiogram in about 7 years. Reading my chart, listening to my heart, noting the very prominent murmur from my biscupid aortic valve, she arranged for me to get an echocardiogram that very week. A few days later, on a Friday afternoon, she called me telling me that there was something on my echocardiogram that she wanted a closer look at, and asked if would I get a CT scan at the hospital. I said sure, did she want me to call to schedule it next week.

“Won't be necessary,” she answered, “you can do it at the hospital today.”

“But I’m on my bike in downtown Boston, it's 4:30 and it’ll take about a half-hour for me to get there”

“That’s alright," she said, "they’re waiting for you.”

That’s when I knew that something was definitely up.

She and I recalled this all together and had a bit of a laugh over it. She was once again pleased with herself that she got me to the hospital that very day, and I thanked her for catching this. Indeed, the echo and the CT scan both confirmed an aortic aneurysm of a size that could justify immediate surgery.

That was the beginning of the whole sequence that led to the surgery I just had, 6 years later.

But now, she just contined her examination, listened to my heart, and with a look of pleasant surprise said, "it's like listening to a different heart!"

[orasfarasiget]

Post-op X-ray of my chest, lateral view. The thin white lines going in curlicues down my the front of my chest are titanium wires passed between the ribs on either side of the surgically-severed sternum, holding the sternum in place while it knits back together over the next 3 months. The wires stay in and are incorporated into the bone as it knits.

[orasfarasiget]

Before the surgery, a bunch of people tried to reassure me…

saying that they were sure I’d come through with no problems. I always thought their attempts at reassurance absurd. Did they have some sort of crystal ball that foretold the future?

Probably they were taking comfort in the statistics that I had mentioned to them, that only 1% of Dr. Cameron’s patients die or are disabled by the surgery I was about to undergo. Those seem like very good odds, but they are just that - odds. If 100 Marks went into that surgery, 99 Marks would come out more or less fine, only 1 Mark would die or be disabled. The only problem is, there is no way to know which Mark I would be - one of the 99 or the other one.

But I didn’t argue with them, I just quoted the old expression, “from your lips to God’s ears” - as a hope, and to perhaps gently let them know about my own attitude about what I was facing.

In a word, I was scared. I had no confidence I would live and not be crippled. It was that which actually frightened me more than death. The whole thing felt like a coin-toss to me and the stakes were pretty damn high.

As I’ve thought about this since the surgery, it’s occurred to me that the difference in attitude might be analogous to someone getting ready to jump from a high cliff. The spectators, knowing that this jump spot is much used and that injuries or deaths are quite rare, aren’t very worried about the divers, they are just excited to see them perform a feat which only looks scary. But a first time diver, one who has never before jumped off a cliff even a fraction that high, would likely be terrified, despite knowing of the general safety of jumping at this spot.

I like the analogy: firstly, it does reflect some of the unusual dangerousness of the surgery (e.g., a skydive has about 1/1000 of the risk of the surgery, a base jump about 1/500 of the risk), and secondly, that’s how I felt, like I was standing on a 100 ft cliff trying to find the courage to launch myself into the air.

[orasfarasiget]

Here's my surgeon explaining, in a one-minute video, how he replaced my aorta and aortic valve in a surgery that took 5 hours.

The tube, attached at the valve end to the heart and at the other end to the aorta, is eventually fully integrated into those organs as tissue grows around and into its surface.

[orasfarasiget]

Peć/Peya

A new night nurse came into my room on my last night in the hospital and introduced herself. Her name and appearance seemed Slavic to me and I’ve traveled a bit in some Slavic countries, so I asked her where she was from.

“Kosovo”, she said.

“Where in Kosovo?” I asked, because I had been to Kosovo, way back in 1970 when it was still part of Yugoslavia. She gave me a quizzical look and said the name of a town I hadn’t heard of. I said I didn’t know that town and asked where it was near.

“Near the capital, Pristina.”

“I never got to Pristina”, I said “but I think I was near there. My girlfriend and I hitched from Athens to Ioannina in northwestern Greece and then up to Skopye.”

“Skopye’s in Macedonia, it's not that far from Pristina.”

“From Skopye we went over the mountains, stopping in a beautiful town called Peć and then down to the sea at Titograd.” She didn’t recognize either of those towns, and then she had to leave to attend to another patient.

While she was out, I found Peć in google maps and showed it to her when she came back.

“Oh”, she said, “that’s Peya. (Since she spoke only Albanian and no Serbian, I'm guessing the way I remembered the name was a Slavic pronunciation.) Such a beautiful town. My school took us there on a school trip, lots of schools do, because it’s so traditional and typically Kosovan.”

“My girlfriend and I loved that town, even though we were there for just one day and night. I had met her in Athens and we were just starting to fall in love. We had a delicious dinner of an orange-colored soup with noodles and then we watched the town’s people promenading on the main street - walking together in small groups the 3 or 4 blocks of the town center, then making a u-turn at the end to do the promenade again.”

“Yes”, she said, “that’s a very typical Kosovan custom, we still do it. I was so surprised when you asked me where in Kosovo, because most people here have never even heard of it. Did you see the river in town”, she asked, “the Drini?”

“Yes. it was beautiful, my girlfriend and I walked along it in the afternoon. As I remember, it was just a street or two away from that main boulevard where everyone was walking.”

“Exactly", she said, “I named my son Drini after that river.”

And then we figured out that Titograd was now Podgorice, the capitol of Montenegro.

Our memories of our separate times in that place sat there with us. Then I asked her about the soup, did she know what it might be? No, she didn't know what kind of soup that was, that delicious, strangely orange-colored soup. That was probably my best, last chance to find out.

[orasfarasiget]

Although I'd been advised...

six years ago by my cardiologist that this surgery was sooner or later an inevitability, I was, quite naturally, extremely reluctant to just go ahead with it at that time. He said it wasn’t urgent yet and that he was comfortable seeing me twice a year to monitor the deterioration of the valve and the size of the aortic aneurysm. He is the chief of cardiology at Brigham and Women’s Hospital and the surgeon who had told me that surgery should occur quite soon had nowhere near his stature. A course of watfchful waiting was initiated.

The valve deteriorated very slowly, the aneurysm was holding steady, and my cardiologist was ok with the delay, if a bit frustrated at times, reminding me every half-year that it remained a question of “when, not if”. He ordered a stress test about 2 years later and the results, he admitted ruefully, didn’t give him the excuse he needed to insist that the "when" had come. I remained asymptomatic - almost 20 years after the age when symptoms usually occur with this condition. My thinking was, "what if I get hit by a truck before I'm symptomatic, I’d have let them slice me up for nothing.”

Then came the pandemic and I didn’t see him for two years.

When I did see him this past spring the valve had significantly deteriorated and the aneurysm was a bit larger. He pushed harder on me: “The when is here now, or not far off."

The weather let me get back on my bike more regularly. I'd missed my usual long bike trip the previous summer because of the pandemic and also because of that had been more sedentary in general. I could feel that my strength was considerably reduced but hoped that could just be the result of so much inactivity. But i noticed that my strength didn’t build as it normally would have. And one day in mid-summer, after a 40 mile ride that took almost twice as long as it normally would have, I knew the jig was up.

Yes, my father had died from open heart surgery, but now the calculation was different. No longer was I deciding between a surgery that could kill or disable me and an life unhampered by my condition, but between a risky surgery and a life with a greatly reduced capacity to continue to live in the manner I loved.

So I went with the surgery and, so far, I’ve lucked out again.

[orasfarasiget]

Lost Companion

The nurse was listening to my heart as she took my bedtime vitals and I realized she wouldn't hear my heart murmur. I asked just to make sure and she told me no, no murmur. Of course, because the bicuspid valve which caused the murmur (and the aneurysm) was no longer there.

And strangly I felt the loss of a longtime companion. This very distinctive murmur, which I had known of from the age of about six or seven, so prominent that it almost always startled doctors when they first heard it, even if I warned them beforehand, this murmur which had made doctors call in trainees to listen to it because it was such a classic bicuspid aortic valve murmur, had left me! I had been proud of it, even after I knew its voice was saying that it was slowly destroying itself and might take me with it.

Funny to miss such an evil frenemy. I think I'll get over that feeling pretty quickly. Writing this. I think I already have.

[orasfarasiget]

Figuring the Odds

I spent a little time this week reading more about bicuspid aortic valves. Found some encouraging information and some scary stuff. Encouraging: that the average age for appearance of symptoms is in one's fifties - so I beat the odds in that by about 20 years (must be due to all that bike riding!) Scary: that my lifetime odds - factoring in my age, size of aneurysm, etc. - of an aortic dissection is 45%. Aortic dissection? The layers of the aorta come apart, permitting blood to flow out of the circulatory system - clearly undesirable and requiring immediate emergency surgery.

And as I've mentioned, the combined mortality/morbidity risk of my surgery is under 1% - so this would seem to be a no-brainer: 1 < 45!

I'm aware the comparison isn't quite correct, i.e. , the 45% risk is lifetime and the 1% risk is one-time, and I don't know how to more properly make the comparison. But intuituvely I'm guessing that these differences would hold up, even if smaller, with a proper analysis.

Anyway, all that makes me want to go ahead with the surgery - which is a good thing, because I'm off to the hospital in an hour!

[orasfarasiget]

You might be wondering...

Yeah, sure, it’s heart surgery - admittedly a serious matter, but is there something else going on here?

And you’d be right to ask - because there is.

My dad died after having this procedure - an open heart procedure that is, not my specific surgery – his was a more common one, a coronary artery bypass. Actually, he had two open procedures. During the first one, he suffered an undetected heart attack that damaged one of his heart valves. He went home, but when he wasn’t getting better after a few months, they finally caught the miss.

After the second surgery, that one to repair the valve damage, he never recovered at all and died in the hospital. I think it was about a couple of months later, maybe even less.

And the kicker is - at the time of his first surgery, he was the exact same age I am now.

I’m not usually a superstitious kind of guy, and I would say I’m not exactly superstitious about this either. But I do find that set of circumstances unsettling. For no particularly good reason, but definitely unsettling nonetheless.

[orasfarasiget]

And this is where it led to ...

This pretty CT contrast scan shows my ascending aorta (on the right), the aortic arch (at top), and my descending aorta (on the left). You can see that the ascending aorta looks a bit too big around. It is - that's an aortic aneurysm - and those can rupture or dissect, which, as you might well imagine, is not as pretty a picture as this.

So to avoid that, both the calcified aortic valve and the ascending aorta will be replaced with prosthetic substitutes (reconstructed cow tissue for the former and dacron for the latter).

Are you grossed out or intrigued? Or just wondering why I am telling you all this?

[orasfarasiget]

This is where it all started...

I was born with a bicuspid aortic valve, which occurs in about 1-2% of the population (males 3 times more likely to have this than females). A normal aortic valve is tricuspid and closes more efficiently than a bicuspid valve. The incomplete closing of the valve permits back flow into the heart and this turbulence eventually leads to calcification of the valve, making the valve opening smaller with symptoms eventually resulting from the reduced circulatory efficiency.

[orasfarasiget]

But wait....

What does getting ready for surgery have to do with bicycle touring? Nothing much, really. But the name of this blog is or-as-far-as-i-get, and this surgery might just be as-far-as-i-get. I will be having my aortic valve and ascending aorta replaced. Done by the chief of cardiac surgery at Massachusetts General Hospital, a world-class hospital. That said, the combined mortality and morbidity rate, while much lower than the national average, is still just a bit under 1%. Doesn't sound like much, but that is equivalent to driving about half a million miles, more or less a lifetime of driving. I'm trying to wrap my head around how to think about that. It's like having the risk of a lifetime of driving shmushed into 4 hours of surgery. I can't quite figure out if that makes me feel better or worse.

[orasfarasiget]

Practicing convalescence

I'm planning to take some time over the next few weeks to practice my postoperative convalescence. Today, with nothing scheduled as either patient or provider, seemed like a good day to start. I slept in a bit, had a lazy breakfast, wrote a few emails, and then onto the couch with a book and jazz on the radio. Quite relaxing, especially so because I don't have any postoperative pain or discomfort. Because I'm preoperative. That'll change.

[orasfarasiget]

Covid ditched the bike tour this year. So, to appease the thronging crowds (of my imagination) I’ll post some random photos from past trips. I can’t exactly remember where this was. The caption is “with plum sauce” which very vaguely rings a bell - somewhere in the Czech Republic, perhaps Slavonice, perhaps fish and potatoes, WITH PLUM SAUCE - AND DELICIOUS!

[orasfarasiget]

Girl climbing rock, near Huutjärvi, Finland.