ICU is history

Shawn got out of the ICU this afternoon, and is now in the intermediate ICU.  The visiting hours are more relaxed and he has a private room, plus it shows more progress (e.g. his blood pressure and heart rhythms are normal and stable).  Overally, this is very much an improvement.

He walked today, about 20 yards, which is a great start.  I mean, people had their hands inside his ribcage only three days ago, and now he’s walking.  Modern medicine is just amazing to me sometimes.

He had some more visitors today, which made him happy.  They removed the tube that drained his chest wound, as well as some of the lines for medicines.  He doesn’t seem to be in much pain, just some tightness  in his chest.

I apologize somewhat for the short posts, but my days are very full and I’m doing this at the end.  Now I’m going to eat some dinner and get some sleep.

Improvement continues

Another quick update (apologies, tired).  Shawn was in a lot less pain today, although still extremely tired.  He sat up in a chair again and even stood for a couple of minutes, which definitely qualifies as progress.  He’s still in the ICU, waiting for his blood pressure to stabilize before he can be transferred to the intermediate ICU.  This should happen tomorrow, but it seems that we are still subject to larger forces than his or my will, unfortunately, so there are no guarantees.

He had quite a few visitors today, to the point that the  ICU nurse had to kick some of us out– the rule is two visitors in the room, and at one point we had five, so this was understandable.  Still, he was happy to see our friends and was pretty animated while they were there.  He asked me to tell our readers “Hi” and “Thanks.”

That’s all for tonight– it’s dinner and sleep for me, and soon.

Let the healing begin

Just a quick note: Today, I could see Shawn’s improvement as the day passed.  He seemed a bit stronger each time I visited him.  The increments were understandably small (this is open heart surgery, after all), but by the end of the day he had been able to sit up for a while and even ate some food.  He was in some pain, of course, but that was remedied with modern analgesics great and small.  There is a chance that he will be out of the ICU tomorrow, but we’ll see how things progress.

Success!

Shawn’s surgery was successful. The surgeon was able to spare his aortic valve, so he will not need a mechanical valve with its attendant lifelong blood-thinning issues. The rest of his tissues look good, and the surgeon was impressed with the size of his coronary arteries (this is healthy, not related to the aortic dilation).

The surgery was long, about seven to seven and a half hours, which is normal for a valve-sparing aortic replacement. It was a long day, since we had to be at the hospital at 5:15am for the pre-op procedures.

His parents and I saw Shawn after the nurses settled him in the ICU. The team at Stanford had done a great job preparing us for the post-operative visit (more on this later), and so the various tubes, hanging bags of fluid, and machines that go “beep” were not a surprise. For the first couple of hours, Shawn was still sedated and intubated, so, although we talked to him and told him we loved him, I get the feeling that those first visits were more our well-being than his. Just a guess, and Shawn may have more to say more about this when he returns to Blogtown.

During our last visit, at 8pm, the doctor and nurses were bringing him out of sedation so that they could remove the breathing tube. He was conscious, though a bit groggy, and seemed very happy to see us. He held my hand and responded to yes/no questions by nodding/shaking his head. I asked him if he was comfortable (or as much as possible), and he nodded. We left after a few minutes so that he could rest and have the tube removed; he had said previously that he wanted the tube out as soon as possible, so I imagine that he felt better last night.

A word about the staff at Stanford: It’s easy to see why this is a top medical facility. Sure, they do the big research and the fancy procedures, but the fact is that the staff (nurses, PAs, desk workers, everyone, really) is fantastic. During the pre-op visit on Wednesday, the process was efficient and gave us ample opportunity to ask questions. We were told, in quite a bit of detail, what to expect for the next 24-48 hours, and this included not just visiting hours and “You’ll see a lot of tubes,” but why our visits were restricted and why the tube was there. We received updates during Shawn’s procedure from the nurse-coordinator for surgery and the ICU (not sure of her exact title, but this seemed to be her function), letting us know how things were progressing and how much longer it might take. When we had a question, someone was able and willing to answer it. I was just really impressed with the experience so far, as a family member. They do good work, and it’s at all of the levels I’ve seen so far.

Now I’m getting ready to see Shawn this morning. It will be my first time seeing (and hopefully hearing) him without intubation, and I’m quite looking forward to it.

Xeno’s arrow

Denial falls away. Surrender approaches. Time clicks by.

Holy shit! Surgery’s tomorrow!

The next few posts here will be from Debbie. I’ll see you all in a little while.

One short film about a plastic heart

Hi, all. This is girlfriend-and-partner Debbie. I’ll be posting while Shawn is in the hospital, away from his laptop, or otherwise indisposed.

For you visual learners out there, I made a quick little movie demonstrating what will happen during the surgery. The story behind this clip is this: Shawn gave a lecture (or “tech talk”) to his coworkers on the subject of his surgery. His cardiologist, Dr. Liang, was kind enough to lend Shawn a medical model of the human heart for said lecture. As the model sat on our dining room table, I decided to try to explain the surgery with pictures that did not come from Shawn’s torso. I initially made the clip for my family, but then Shawn used it in his lecture, and now it appears here.

Here is the result, using my recently-purchased digital camera and a brand-new YouTube account. Honestly, I thought that the service was only for posting TV clips and embarassing home movies. Turns out that YouTube has a surprising number of videos there about aortic dilation and dissection.

Cool pictures

My doctors at Stanford have graciously endured my pestering and provided copies of many of the echo and CT images taken over the last few years.

This enhanced CT image puts you inside the aorta, looking down at the aortic valve. You can clearly see the three valve leaflets, currently closed. By measuring across the width of the aorta at this point, my doctors have estimated my aortic root to be approximately 4.9cm at the widest point. This is significantly wider (by 1.5cm or more) than what’s expected.

The incredible 3D CT image below shows the heart, the curved aortic arch, and the dilated aortic root (bulge at center).

The story so far, cont.

For those who have yet to hear the details, I should provide a summary of what aortic root replacement is. I’ll try to keep it short.

As mentioned previously, a small section at the base of my aorta is enlarged. If left untreated, there is a small but increasing risk of rupture, or dissection. You want to avoid dissection at all costs: not only is the survival rate poor, but the ability to repair the damage in an emergency situation is greatly reduced. Hence my doctors’ recommendation for aggressive, elective surgery to remove the risk entirely.

Although this condition is not common, there is a good deal of surgical experience. The classic fix, practiced thousands of times over more than thirty years, is called the Bentall procedure. After opening the chest and setting up a heart/lung bypass, the surgeon removes the problematic section of the aorta and replaces it with a simple Dacron tube (a graft). Because the aortic root provides structural support for the aortic valve, replacing the root traditionally meant that the natural valve would no longer function correctly. Therefore, the Bentall procedure also involves removing the natural valve and replacing it with a synthetic one.

This well-understood operation has proved to be very successful. For most patients, the graft lasts the rest of their lives. There is, however, a significant downside: because of the risk of clotting introduced by the synthetic valve, Bentall patients must take blood-thinning medication for life. The most common medication is Coumadin. Although Coumadin is safe and effective, it does introduce the risk of hemorrhage. It also requires relatively frequent blood tests and dosage adjustments. For a young patients with decades left of life, these restrictions can be burdensome. There’s no flying down risky black diamond ski runs when you’re on Coumadin.

About fifteen years ago a surgeon at Toronto General Hospital named Tirone David experimented with a different approach, which has come to be known as the David procedure. In this modification, healthy aortic valves are left in place. Through a complex series of sutures which I like to call “creative sewing,” the natural valve is suspended within the Dacron graft. The operation is longer and more complex that a Bentall, but it has the attractive result of sparing the natural valve and avoiding Coumadin. Over the past fifteen years variations of “valve-sparing” root replacement have slowly become more common, especially with younger patients. Stanford is the leading hospital in the United States doing this type of surgery.

Like every good thing in life, there is a trade-off. Valve-sparing operations haven’t been done as long as the Bentall, and fewer patients have had the procedure. Therefore, although the outcomes so far look excellent, the long-term results cannot be known. The main concern is with the extended health of the natural valve. Placed inside a new environment (the synthetic graft) with slightly different mechanical dynamics, it’s possible that valves will eventually wear out. There is little evidence for this now, but the possibility exists, and we won’t know until the early cohorts of patients grow older.

That’s my choice in a nutshell: tried-and-true, but with a big downside, or the up-and-coming, with a question mark in the blurry future. In the worst case, a David procedure patient might need follow-up surgery in two or three decades. I do not relish the thought of a second heart surgery. But I do not enjoy the idea of being on blood-thinners for life, either. Welcome to classic cost-benefit analysis.

In my case, the decision wasn’t really that hard: the valve-sparing route, with its promise of a normal, unrestricted life for the indefinite future, was the clear choice. As with every valve-sparing operation, there is a small chance that I might wake up with a Bentall instead: the true condition of the aortic value can’t be determined until the surgeon sees it firsthand, and there’s no point trying to spare a damaged valve (progressive dilation of the aortic root often eventually leads to valve damage). But all the evidence currently points to my valve being healthy.

Open-heart surgery carries risks. But life, especially my current life, carries its own risks. I won’t be the first to point out that the real trick is balancing those risks effectively. This Thursday represents my attempt to do some balancing.

How to agree to the very disagreeable

I’ve decided there are two kinds of open-heart surgery:

1. The do-it-now-you-have-no-choice kind.
2. The yes-you-need-it-but-the-timing-is-up-to-you-but-do-it-soon kind.

The first category includes just about every heart surgery you’ve ever seen on “ER.” The second category includes me and people like me. Guess which category I consider to be more agonizing?

I certainly don’t mean to denigrate those with emergent or near-emergent heart problems. The coronary bypass has saved countless lives, forever blunting the fatal overtones of the term “heart attack.”

It’s just that… if you combine Category 2 with someone like me, someone who likes to think, and ponder, and evaluate (even ruminate)… well, just ask Dr. Liang. He tried for nearly three years to convince me to have my aortic root fixed. For most of that time, he failed.

The psychological process I’ve gone through to make the decision to have elective heart surgery is long and complex. I’m sure it will make a mildly-interesting blog post sometime. But I can sum it up pretty well: before I could schedule the surgery, I needed to accept that the surgery was inevitable.

My doctors at Stanford were never equivocal on this. From the first day, Dr. Liang made clear that my aorta needed to be fixed, sooner or later, and preferably sooner. He repeated that to me whenever we met. And I believed him. And yet… and yet there remained, and to this day remains, a small voice in my head, asking, questioning, denying: maybe my anatomy, although unusual, is “normal” for me. Maybe it doesn’t represent the risk they think it does. Maybe there’s some other way.

Despite her concern for me, Debbie quietly accepted my need to be skeptical, to question and to research. She knew that I needed to work through the process in my own way. After years of procrastination and denial, after reading medical journal articles and juggling my conflicting thoughts into a thousand different combinations, last fall something changed. For some unknown reason my chaotic feelings and beliefs settled down into a smooth surface. I talked to a patient who had undergone the procedure. I called Stanford and almost scheduled the surgery. Then, later, I called back, and did.

My doubts are still with me, but now they coexist instead of overwhelming. I’ve accepted that there’s only one way through this situation. From that acceptance flows everything else.

The story so far

On Thursday, June 12, 2003, a cardiologist in San Francisco moved an ultrasound wand over my chest and said, “Huh. That’s interesting.”

In my experiences with the medical establishment over recent years, I’ve learned a few things. The most important is that you don’t want to be interesting to a doctor.

In this case, the interesting discovery was a dilated aortic root. As you might know, the aorta is the body’s primary artery – the main channel for carrying oxygenated blood away from the heart towards the rest of the body. The aorta begins at the heart’s left ventricle (the largest and strongest of the heart’s four chambers) at a junction known as the aortic valve. This valve, like the heart’s several other valves, contains “leaflets” which open in one direction and close in the other, preventing blood from flowing the wrong way.

The base of the aorta, surrounding and supporting the aortic valve, is called the root. Everyone’s aortic root has a natural bulge. In my case, my cardiologist was surprised to see that the bulge looked bigger than it should be. It was expanded, or dilated, over a short distance just above the heart.

With each heartbeat, the aorta is subject to mechanical stress as blood surges out of the heart. A dilated root is evidence that the wall of the artery could be weakening. If left untreated, a weakening vessel wall can eventually tear or its several layers separate, a condition known as dissection. Aortic dissection is an emergency: a life-threatening medical condition from which people die.

This was troubling news, to say the least, but my doctor at the time suggested that my aortic root was not something of immediate concern. Yes, I should avoid anything that dramatically raised my blood pressure, which increases strain on the artery. Luckily I had long before given up my dream of becoming a professional weight-lifter (hah), so there would be little or no effect on my daily life. Although my doctor did mention the possibility of surgery, it sounded like it was decades away at earliest. I left his office a little shaken but entirely optimistic.

Nine months later, on March 31, 2004, life changed. I was talking to Dr. David Liang, the lead cardiologist at the Stanford University Medical Center Cardiology Clinic. I had come to Stanford to be evaluated for Marfan Syndrome, a connective tissue disorder with several distinguishing characteristics, including aortic dilation. After reading about the condition and discussing it with my primary doctor, it seemed a good idea to consult with the experts. Stanford hosts one of the only cross-disciplinary Marfan clinics in the country, and was conveniently close to my home in San Francisco. A Marfan diagnosis could actually be helpful, because a fair amount is known about the disease.

In the intervening months, I had been diagnosed and then successfully treated for papillary thyroid cancer. This involved both surgery (full removal of my thyroid gland) and treatment with radioactive iodine. As bad as it sounds, there’s an adage in the medical world: if you’ve got to have cancer, make it thyroid cancer. The surgery was relatively easy and the iodine treatment, unlike the radiation used to treat other types of tumors, is painless and without side-effects. Even better, the survival rate for most types of thyroid cancer is excellent – my life expectancy barely experienced a blip, statistically speaking.

These events occurred near the end of 2003, and by the following spring I walked around the city feeling like a normal person again. My expectations of my upcoming visit to Stanford were sanguine: either I had Marfan Syndrome or I didn’t, and either way I would understand my situation better than before. I felt prepared for any possible outcome.

So when Dr. Liang, young and energetic, strode into the exam room and announced that I didn’t have Marfan Syndrome, I met the news with a relaxed interest. Alas, the gods have a twisted sense of humor. He immediately followed up by informing me that my aorta needed to be fixed, soon, within a few years at the most, and the treatment was open-heart surgery. I was stunned.

Looking back on that day from a distance of nearly three years, it’s hard to recall the exact series of emotions I experienced. I do remember coming home and telling Debbie, my girlfriend-and-partner. I gave her the news calmly and she listened calmly. We began considering the shape of our new and unexpected future. I was 34.