From the Mind of Trevor Stone

It's my body's half birthday and my new swallowing mechanism is five weeks old. Sounds like a good time to check in. If you're just tuning in, I had surgery in February to address achalasia.

As previously reported, I took the week of surgery off from work. This was a really good move: even though I was feeling a lot better than I'd expected (and my work basically involves reading words on a computer screen, typing, and occasionally talking to people), the dedication to resting and relaxing really helped my mind reset, my energy rebound, and focus on readjusting to food.

I spent the second week working from home, which was also a smart move. I was still on a liquids-and-purées diet which was made much easier by having a refrigerator and a fancy blender fifteen feet from my desk. My dad brought over a big ring of red Jello (a food with strong Stone family associations), Lucky's Market recently started carrying nice cashew yogurts, and I had several bunches of bananas with staged ripeness. I noticed that I pretty quickly transitioned back into "Wait, there's one more thing I should do" mode while working, but since I'd handed off a lot of responsibilities, the number of just-one-more-things was fairly low.

A week and a half after surgery I drove back down to the hospital for another x-ray barium swallow to see how thing were going down. After about two swallows of barium liquid the lab tech got a worried look on his face and called a doctor in to look at the images and compare them to what they saw the previous month. After conferring and calling my surgeon's office, they announced that the study was done and I could leave. Not particularly reassuring…

I had a "review the barium study" appointment scheduled with the surgeon two hours later, so I hit up the army surplus store between the hospital and his office. While trying on a pair of nice "tactical trousers" the hospital called and asked me to return (also not very reassuring…). My surgeon showed me the imagery sequence and pointed to a pattern of liquid spreading that looked like it could be a leak. He was suspicious of this interpretation, though, because I didn't show any signs (like total misery) of having been eating with a perforated esophagus, stomach, or junction for ten days. He had me lie down for a regular x-ray and then conferred with the folks from the barium swallow. After a few minutes he came over and said "What I thought was a leak and what they thought as a leak were two different parts of the image." The additional x-ray and mutual second opinions ruled out leaks in both cases. Thank goodness for questioning data and interpretation.

The recommended diet progression is soft food for the third and fourth weeks. I returned to work since I knew I could depend on tuna salad, egg salad, and hummus in the daily lunch salad/sandwich bar and soggy Cheerios (working up to granola) for breakfast. These were my work-food staples for the second half of last year, so I was confident I'd be able to handle them. I was also very excited to reintroduce things like moist grains (rice, barley, oats, and friends), noodles, berries, and tofu. In week four I made three peanut butter, tofu, and chocolate pies for our office's π Day celebration. The puréed legume goo was a little challenging for my swallowing skills, but not problematic. I was also able to eat several folks' apple pie filling and even some flaky crust. I was able to survive some corned beef, potatoes, mustard, and lamb stew on St. Patrick's Day, though I had a regurgitation episode and concluded that was a little too ambitious.

By the recommended diet progression, I should be more or less back to a normal diet. I'm still eating slower than a normal person, but I can now finish most or all of a large lunch in an hour, which is 80% faster than I could handle a medium plate four months ago. I can get through about 75% of a meal at a restaurant before taking home a box. Spices, dry fish, and little bits that slip through without chewing are still challenging and have led to a few regurgitation episodes, but I'm able to respond to most issues by just pausing a meal and walking around. I've been fairly shy about meat that hasn't been soaked in soup, but I was able to handle ground beef today. I think I'll wait at least another week for meat that I have to cut, but I'll be trying sausage in a day or two.

I've had several intense reflux bouts, usually about half way through the night, though yesterday featured an extended before-bed adventure with mild heartburn. Combinations of Altoids, crystalized ginger, and water only sometimes help settle symptoms. When planning surgery I was aware that a significant fraction of folks experience ongoing heartburn and acid reflux. Having spent 2015 dealing with painful reflux and 2016 dealing with regurgitation and weight loss, I'd decided that I'd gladly trade the latter for the former. I need to get better at building up sleep reserves, though, 'cause I can lose an hour to three of sleep from heartburn without advanced warning.

This month I switched projects at work (still under the umbrella of Drive). We're in the "Figure out what the heck our users really need" phase which means our engineering pace is fairly relaxed and we spend a lot of time reading and theorizing, which has been helpful in continuing my "avoid stress" plan. Unfortunately, I've easily fallen back into the habit of going to bed at 1am, so I'm not making many deposits in the sleep bank, despite not needing to take a lot of withdrawals.

I've still got a "eat as many calories as you can" mindset, but I thankfully don't have to micro-optimize my decisions around it. I'm finally back to having alternating phases of hunger and meals rather than a continuous stream of slow eating and reduced metabolism. I've got way more energy than I did during the second half of last year and I don't feel like I'm in survival mode. I was able to quickly get my weight back to the low 120s but haven't been able to make progress beyond that. I guess my normal metabolism—which has basically been at late-teenager levels for twenty years—has returned. I've abandoned my "eat a pint of ice cream for dessert" weight gain plan, since it seemed to be more effective at triggering heartburn than fat storage. Maybe I should try increasing my beer intake :-)

Close to two months ago, my weight was hovering just about 110 pounds.
With a calcium channel blocker, I was able to eat a normal day's worth of food and not regurgitate most of it, so I managed to gain about 10 pounds in a month.
Making further progress on my annual goal of gaining 30 has been challenging, and I've hovered around 120 for the past month.
I weighed in at 120.5 on Saturday morning.
After a weekend of clear liquid, I'm heading into surgery at 115.
I'm quite glad I was able to invest in that fat buffer.
Here's to hoping I'll be able to swallow a lot of soft calories in the next two weeks.

A somewhat surprising side effect of taking calcium channel blockers for achalasia:
20 minutes after I take a pill, my thighs get really warm right above my knees.

The last time you heard from my esophagus, dear readers, it was freshly diagnosed with achalasia, a condition wherein the lower esophageal sphincter doesn't relax to let food into the stomach and the esophagus doesn't effectively squeeze to push food down. The result was that food would often build up at the bottom of the esophagus until it reached a critical volume (either from intake or buildup of mucus) and my regurgitation reflex kicked in, ejecting the contents. While the regurgitation was unpleasant, the biggest health problem was weight loss and inability to recover: I'd spend over half the day slowly eating, unable to gain any weight from one week to the next.

I was prescribed a calcium channel blocker, which relaxes smooth muscles for a few hours. I've been taking it before meals for the past six weeks and holy cow is it wonderful. Like night and day is the contrast between my pre-diagnosis experience and my eating ability on the medication. I take a pill, wait 30 to 45 minutes, and have a meal. A full meal. That only takes an hour or two. Not six hours spent eating a modest plate of hummus, tuna, ham, and carrots. And on the drug I can eat things of pretty much any texture: I ate ground beef on a hamburger bun with lettuce and tomato recently, with only mild discomfort and occasional pauses. Three months ago, any of those foods individually would have been a risky venture.

I get a wry grin when I tell folks that my new year's resolution is to gain thirty pounds. I was able to put ten pounds back pretty quickly. I even gained three pounds in one day early on, which was a very worrisome trajectory, but it turned out it was just due to water retention: calcium channel blockers dilate your blood vessels and cells too, so my feet and ankles got kinda puffy. I've kind of stalled out around 120 lbs for the last few weeks, hitting as high as 123 and as low as 119. I feel way better though, since I'm able to get enough water every day.

Taking a pill before each meal isn't a perfect solution. I need to time it for about 45 minutes in advance, which can make a restaurant visit tricky (Will there be a waiting list? How long will the dish take to cook?). It can also wear off before I expect, leading to a couple hours of discomfort and regurgitation at the end of a meal. And I sometimes get caught in a situation where a light snack would be ideal, but the options are pretty constrained. This isn't the first time I've had Mi-Del ginger snaps play an important role in healing.


January was the month of doctor's visits: eight (four in Denver), plus twice-weekly physical therapy. (Compare to last January when I averaged a doctor's visit every other day.) My rheumatologist, gastroenterologist, and two foregut surgeons thought the achalasia and psoriatic arthritis were unrelated; Dr. Lutt guessed that the study correlating achalasia to uveitis was the other type of uveitis. Psoriatic arthritis leads to inflammation in the connective tissue and intestines, neither of which are related to the sphincter or esophagus, so scratch that theory. I've also been curious if Chagas disease might be causing my achalasia–I was in Central America 7 years ago, which is close to the typical incubation time. Both surgeons said a Chagas diagnosis wouldn't change anything from a surgical perspective, but it comes with some worrisome cardiovascular issues, so I'll see what the CDC says after they closely inspect my blood for parasite antibodies.

Achalasia can be treated with several procedures, all of which address the constricted esophageal sphincter and not the squeezing abilities of the esophagus itself. The conceptually simplest is a balloon dilation: feed an inflatable tool down the throat and carefully expand it inside the sphincter. This tears the sphincter muscle fibers a bit, so they don't constrict as much. This isn't permanent–the muscle will eventually heal–but it could last ten or fifteen years (or potentially just a year and a half). Another temporary option is Botox, though its duration is usually measured in months and it leaves scar tissue, so it's only recommended for the old and frail.

There are two surgical options, both myotomies which cut the sphincter so that it opens easier. The Heller myotomy is has been performed for over a century, is well studied, and has reliable results. It's performed laparoscopically, with instruments inserted through small incisions in the abdomen and operating on the esophagus from the outside, underneath the skin. This is generally complemented by a Dor fundoplication, which wraps the stomach around the esophagus. When the stomach contracts, it will close the sphincter, helping prevent acid reflux and heartburn. The POEM procedure is fairly new: developed in Japan in the late naughties and brought to the U.S. in 2010. POEM works from the inside, tunneling between the mucosal and muscle layers in the esophagus, and doesn't include a fundoplication. POEM has the advantage of a quicker recovery time: one week on soft food and back to work in less than that, whereas Heller is followed by two weeks of a liquid diet followed by two more weeks of soft food; it also comes with a week off work and a month of not lifting heavy objects.

The fewer cuts, quicker recovery, and earlier return to a normal diet make the POEM a very attractive option. In Denver, Dr. Emily Speer has experience performing the procedure, but won't have the equipment until the latter half of the year, and she'll then need to assemble and train a team of POETs to support the surgery. Dr. Reginald Bell is an old and experienced surgeon who's probably performed more myotomies than anyone in Colorado. He said he performed the POEM a few times but found that his hands felt more comfortable with Heller; since his patients didn't have significantly better outcomes with the POEM, he decided to stick with what he does well. When there are sharp instruments next to one's throat, it's important they be wielded by someone who can use them properly.

I've therefore got four reasonable choices. Do the tried-and-true Heller procedure soon with the very experienced surgeon. Wait a year and do the POEM with the freshly-trained POEM surgeon. Travel to Portland and do the POEM with the U.S. experts, then recover at a friend's house for a few days. Get a balloon dilation and hope it lasts several years, then get a myotomy when the sphincter starts overconstricting again. I was initially inclined towards the balloon-and-wait strategy since I was worried that my weight loss and weakness would make surgery recovery challenging. The tearing from dilation makes subsequent surgeries more challenging (POEM moreso than Heller) and my weight gain in January has made me think I'll be better able to recover from a surgery this year than in my late forties. Waiting a year would be attractive, but there's a big risk: calcium channel blockers tend to stop working after "a few" months, so I might fall back to the realm of eating-challenged for months before the procedure. The risk of being forced into a soft diet for several months in advance of a POEM doesn't seem like a good tradeoff for avoiding a month of liquids and soft foods after Heller. Finally, I called The Oregon Clinic, where the national POEM experts are and where I know enough Rangers that I could probably find a spare bedroom and good friends to aid recovery. They would want to schedule some tests in late April and then schedule a surgery after that, which would mean early summer at the soonest. Between the risk of the drugs becoming ineffective this spring and the challenges of a recovery in an unfamiliar environment, this didn't seem like a great plan.

Dr. Bell, after confirming that I'm an engineer, pointed at his frontal lobe and said "I think you know that people don't usually make this kind of decision up here," and then circled the base of his skull, saying "they make it somewhere back here." So after a month of reading, interviewing, mulling, and listening to my nurse practitioner wife's insights about healing and surgical recovery I decided that a Heller when I know I'm feeling good is better than a long wait, and a risk of backsliding, for a quick recovery down the road.

The next step toward long-term health is on February 20th. I'm a little nervous, but mostly I'm excited. Fingers crossed, sphincters open.