Mastodawn

Jonathan Kamens 86 47 Sep 15, 2025

Here we go for round two of #PanCholLiveToot! I'm in a Lyft on my way to Brigham & Women's Hospital for my second inpatient stay to participate in a clinical trial for a revolutionary cholera vaccine called #PanChol. Catch up on the last chapter at https://blog.kamens.us/2025/09/04/panchol-clinical-trial-thread-unroll/. Follow along at #PanCholLiveToot as I post about the experience.

Jonathan Kamens 86 47 Sep 15, 2025

Now's your chance to ask all your questions about what it's like to participate in a clinical trial for a kind of gross tasting experimental oral cholera vaccine!
#PanCholLiveToot

Jonathan Kamens 86 47 Sep 15, 2025

The Lyft driver who brought me to the hospital was a little heavy on the horn and gas pedal even for a Boston driver. And maybe cleaning the inside of his windshield while stopped at a red light wasn't the best idea. But he'll still get a tip and five stars from me, I'm not a monster.
#PanCholLiveToot

Jonathan Kamens 86 47 Sep 15, 2025

I'm masked for the time being, but once I'm admitted and in the isolation room where I'll be spending the next four to seven days, I'll be able to safely unmask.
I'm sorry to say that very few people at the hospital, either patients or staff, are wearing masks, which is unfortunately par for the course. The staff of the clinical trials unit does mask when they're with patients, which I guess is better than nothing. 🤷
#PanCholLiveToot

Jonathan Kamens 86 47 Sep 15, 2025

The staff doing check-in for the clinical trials unit seemed confused about why I was here today, which is slightly atypical; they're usually on the ball. But they figured it out and I've been escorted to an exam room where I am now being rescreened by one of the study doctors to confirm I'm still eligible.
She has warned me that judging from the results they have so far from this phase of the trial, 7 days in the hospital is more likely than 4.
Good thing I brought snacks.
#PanCholLiveToot

Jonathan Kamens 86 47 Sep 15, 2025

I have arrived at the room where I'll be staying for the next week after I take a booster dose of the experimental cholera vaccine. I haven't taken the vaccine yet, so the isolation hasn't started, so the doors are propped open.
They just took my blood pressure and it was significantly higher then usual. Don't know why, it's not like there's anything going on in the world to be stressed about!
#PanCholLiveToot

Jonathan Kamens 86 47 Sep 15, 2025

This is my workstation for the next week. There's a table in the room with an old monitor connected to a computer and some custom input devices used by other studies. I brought from home my DisplayLink hub, both VGA and DVI cables, keyboard, and mouse. I'm not exactly supposed to mess with stuff on this table, but nobody cares (I don't think they use it anymore), so now I'm plugged into the monitor and can easily switch the monitor, keyboard, and mouse between the two laptops.
#PanCholLiveToot

Jonathan Kamens 86 47 Sep 15, 2025

It's a terrible monitor, but you work with what you've got. This big boy is also in the room, and I suppose I could figure out how to maneuver it to be close enough to the laptops to use as my second monitor, but I don't think I'll be able to get it close or low enough to be comfortable (the height isn't adjustable). #PanCholLiveToot

Jonathan Kamens 86 47 Sep 15, 2025

Last thing before taking the experimental vaccine is a blood draw. They took seven vials today, which works out to about 15% of a typical blood donation. That's supposedly the biggest draw of the study.
My veins are usually quite cooperative, but I've been donating blood for many years so sometimes they run into scarring and have to switch veins. Today they had to switch twice 😞 so I ended up being stabbed by needles three times. D'oh!
#PanCholLiveToot

Jonathan Kamens 86 47 Sep 15, 2025

It's finally time to take the vaccine. Down the hatch!
This is live, genetically modified cholera bacteria diluted in distilled water. It tastes just a little gross, mostly just salty.
Now I have to wait an hour before I can eat lunch.
I took the vaccine >20 minutes ago and they still haven't brought me the menu to order lunch, and it's going to take an hour for the food to be delivered once I order, so I am hangry.
#PanCholLiveToot

Jonathan Kamens 86 47 Sep 15, 2025

The food service here is provided by Sodexo. They are… not good at it.
When I got to the floor this morning I told the nurse I would need a kosher menu; although I'll eat vegetarian food that isn't certified kosher, I won't eat non-kosher meat, and I don't want to go a whole week with no meat). She called food service to ask them to send up the kosher menu. They told her they don't have a kosher menu, which isn't true; they gave me one the last time I was here.
(continued)
#PanCholLiveToot

Jonathan Kamens 86 47 Sep 15, 2025

(And if it _is_ true that they don't have a printed kosher menu, then that is, you know, not OK?)
Anyway, apparently the nurse spoke to someone else who said they do indeed have a kosher menu and they would send one up; it is now several hours later and they still haven't done that.
The non-kosher printed menu has a typo on it.
There's a QR code on the menu for viewing the weekly specials; the specials posted at that URL are from May.
(continued)
#PanCholLiveToot

Jonathan Kamens 86 47 Sep 15, 2025

When I gave up on waiting for the kosher menu and called to order vegetarian food from the regular menu for lunch, they said I couldn't because there was a "kosher" restriction on my diet in the database.
This is stupid. "Kosher" isn't a medical restriction, it's a personal preference. If someone indicates on check-in that they want to have the option of ordering kosher food, they should still be able to choose in the moment to order from the regular menu.
(continued)
#PanCholLiveToot

Jonathan Kamens 86 47 Sep 15, 2025

So to be able to order from the regular menu I had to hang up, have the nurse to remove the kosher designation from my patient record, and then call back.
(continued)
#PanCholLiveToot

Jonathan Kamens 86 47 Sep 15, 2025

More food service whinging:
* I track my caloric intake, and they don't provide calorie counts on the menu. I can ask over the phone when I order, but that's a hassle and it gets messed up if I decide to save part of my meal for later.
* Ordering over the phone is very much not state-of-the-art for hospital food service; modern hospitals allow online ordering.
I have already broken into my snacks from home because lunch is so delayed.
I am sure I will have more food complaints.
#PanCholLiveToot

Jonathan Kamens 86 47 Sep 15, 2025

This was lunch. Credit where credit is due: it was not terrible, and they sent up a flyer showing the weekly specials which makes it slightly less not ok that they haven't updated the specials on the website since May.
I saved the fruit and cherry ice for later. The salad vegetables were very fresh and tasty. The "broccoli cheddar cauliflower crust pizza" was no more or less boring than I expected.
#PanCholLiveToot

Jonathan Kamens 86 47 Sep 15, 2025

Whenever I travel I get nervous about the fact that I have only one laptop with me. At home I have my primary desktop and two laptops, so if one of my computers stops working I have two others to fall back on. But on the road I've got just the one.
Crazy, right? Well, when I sat down to work a few minutes ago after eating lunch, my laptop was hot and unresponsive. I had to use the power button to power-cycle it.
It's just a one-off, right? Nothing to worry about? 😟
#PanCholLiveToot

Jonathan Kamens 86 47 Sep 15, 2025

My laptop went crazy again, but this time it did it gradually while I was using it, so I was able to figure out that the problem is one of firefox's WebExtensions processes is sucking up all my memory.
Remember when 16GB of RAM was enough to run Linux?
I don't want to waste any more time now dealing with this so as a stopgap I just added a 16GB swap file to the 4GB of zramswap already configured.
I'll need figure out at some point which extension is leaking RAM, but not now.
#PanCholLiveToot

Jonathan Kamens 86 47 Sep 16, 2025

Good morning #PanCholLiveToot fans! How are y'all doing today? I had a decent night's sleep in my dark, quiet isolation room, though it would have been longer if I hadn't binge-watched 7+ hours of Babylon 5 before going to sleep.
The episode where EarthGov tries to torture a confession out of Sheridan ("Intersections in Real Time") is extremely well-done and absolutely horrifying.

Jonathan Kamens 86 47 Sep 16, 2025

This was dinner last night. In Sodexo's defense, this is exactly what I ordered, so if it's a little sparse that's my fault.
The mac & cheese was not noteworthy. The steamed broccoli was good and I wish they had given me more of it.
Dinner a half hour later than it was supposed to. Grr.
The food menu claims food service opens at 6:30am, but if you call when they're closed the automated message says they open at 7:00am.
Apparently consistency is too much to expect.
#PanCholLiveToot

Jonathan Kamens 86 47 Sep 16, 2025

Today I am hoping to have a productive, full work day!
#PanCholLiveToot

Jonathan Kamens 86 47 Sep 16, 2025

Here's this morning's breakfast. It arrived in record time and both the potatoes and the apple compote were actually pretty good. The menu claims the pancakes are gluten free. If that's accurate then I'm impressed, because I couldn't tell. If it's not accurate than uh-oh.
#PanCholLiveToot

Jonathan Kamens 86 47 Sep 16, 2025

I asked the nurse this morning for a couple Tylenol because I woke up with a headache, presumably from bingeing TV until 1:30am (bad idea, do not recommend). When she brought the Tylenol it came with my daily vitamin D pill. And I mean literally _my_ vitamin D pill, i.e., it's from a bottle of pills I brought to the hospital from home. As per hospital policy, I had to turn it over to the pharmacy yesterday so they could dispense it during my stay. Srsly.
#PanCholLiveToot

Jonathan Kamens 86 47 Sep 16, 2025

I had another blood draw this morning, fortunately with only 3 vials rather than yesterday's 7 vials. And they managed to get what they needed with just one venipuncture, so that was nice.
#PanCholLiveToot

Jonathan Kamens 86 47 Sep 16, 2025

Those of you who were with me on this journey the last time around may recall that it involves collecting stool samples. That's happening this time as well, starting today (I got a free pass yesterday). The procedure hasn't changed from last time, so if you're curious you can read what I wrote about it before, at https://federate.social/@jik/113414002326890114 or https://blog.kamens.us/2025/09/04/panchol-clinical-trial-thread-unroll/#poop .
#PanCholLiveToot

Jonathan Kamens 86 47 (@[email protected])

Content warning: scatological

federate.social

Jonathan Kamens 86 47 Sep 16, 2025

The nurses are cool about it, but I have to say it's really weird to press the call button and then when the nurse comes in say, "Here, I have some poop for you!" and hand them the equivalent of a sorbet tub with poop in it.
As the nurse was leaving the room a few minutes ago after giving me the sample container to use, she said, "Thanks for your poop!" 😜
#PanCholLiveToot

Jonathan Kamens 86 47 Sep 16, 2025

ProTip, courtesy of @msokolov in https://fosstodon.org/@msokolov/115200828334719584: If you're going into the hospital and you'll be showering while you're there, bring a big, fluffy towel with you. Hospital towels are small, scratchy, and threadbare. You will be glad to have a nice one.
Here you can see (half of) the big towel I brought with me vs. a hospital towel.
#PanCholLiveToot

Jonathan Kamens 86 47 Sep 16, 2025

Also, if you expect to be spending a lot of time in bed in the hospital, then as @Adventurer (https://sfba.social/@Adventurer/115199676231327810) and @BonehouseWasps (https://mastodon.social/@BonehouseWasps/115199929810382931) suggest, consider bringing a comfortable robe. I personally did not bring a robe because I'm spending my days up and working, not lying in the hospital bed, and for that I prefer to be dressed in real clothes.
#PanCholLiveToot

Adventurer She/Her (@[email protected])

@[email protected] Noise cancelling headphones, snacks, eye shades to block light, cozy robe and slippers, drinks, something that smells good such as hand lotion or hand sanitizer or something that you can sniff because sometimes there are weird odors. By eye shades I don't mean sunglasses but those eye things that are soft and light blocking.

SFBA.social

Jonathan Kamens 86 47 Sep 16, 2025

Here's a #poll that's relevant to my experience in the hospital for this clinical trial.
Which would you rather have? A week-long vacation where you eat:
#PanCholLiveToot

mediocre food cooked and cleaned up by others

33.3%

good food cooked and cleaned up by you

66.7%

Poll ended at Sep 17, 2025 at 11:31pm.

Jonathan Kamens 86 47 Sep 16, 2025

Personally, there are few things I truly enjoy cooking, and I dislike washing dishes, pots, and pans, so I'd pick mediocre food cooked and cleaned up by others over good food cooked and cleaned up by me. That's why despite my sniping at Sodexo in this thread for not doing such a great job of running the food service at the hospital, I'm not actually all that worked up over it. Everything they've served to me since I arrived yesterday has been edible, which is really all I need.
#PanCholLiveToot

Jonathan Kamens 86 47 Sep 16, 2025

It's worth mentioning that a lot of the things that make people perceive food as "good", e.g., salt and fat, are less healthy. It's not _impossible_ to make food that's both healthy and delicious, but it's more work, and perhaps harder still in large quantities. So it seems like food service at any hospital, which is expected to serve healthy food to a large number of people, is going to find it challenging to make the food consistently delicious.
#PanCholLiveToot

Jonathan Kamens 86 47

On the other hand, a wealthy friend of mine whose children were born at a hospital in Greenwich, CT, a _very_ wealthy community, told me that hospital had a tradition of serving a steak dinner to the parents after every birth, and it was a _good_ steak dinner.
So I suppose if you're the kind of hospital that caters to rich people and charges fees consistent with that, you _can_ make the food delicious.
#PanCholLiveToot

Jonathan Kamens 86 47 Sep 16, 2025

Story time… There aren't many Boston area kosher caterers, so Jews here tend to experience the same ones over and over at weddings and bar mitzvahs. My wife and I attended many affairs done by "the expensive caterer," but then we went to the wedding of a _very_ wealthy friend, and the food—from that same caterer—was leaps and bounds better than ever before. It turned out there was a "how much it costs absolutely does not matter" level of quality we'd been totally unaware of.
#PanCholLiveToot

Jonathan Kamens 86 47 Sep 17, 2025

I mentioned earlier that when they took my blood pressure during intake it was quite high. That was also true when they took it again yesterday.
Furthermore, several times in the past week I've had unexplained minor chest pains.
I thought this was totally out-of-the-blue, and I was a bit worried, but I just realized what's going on.
I had a cortisone injection in my hip for the first time last Friday. It turns out they can cause elevated blood pressure for 5–7 days.
#PanCholLiveToot

Jonathan Kamens 86 47 Sep 17, 2025

They just took my daily vitals and my BP was at 120/75, a lot better than the 190/95 reading they got when I arrived on Monday! Perhaps the excess cortisone from the hip injection has finished working its way into my bloodstream.
I'm peeved the N.P. who gave me the cortisone shot didn't mention anything about it potentially elevating my blood pressure for a week.
I suppose she didn't know I'd be in the hospital three days later with people taking my BP daily. 🤷
#PanCholLiveToot

Jonathan Kamens 86 47 Sep 17, 2025

Me to room service rep: "Please tell me the total calorie count for the meal I ordered?"
Room Service: "The system doesn't tell me that."
Me: "Everyone I've ordered food from since Monday has been able to tell me. I need to know the calorie count for my meal."
RS: "Oh, I don't know how to do it. Please hold, I'm going to transfer you."
*hold music for ~a minute*
RS (same person, not transferred): gives me the calorie count for the meal
Problem solved, no harm done, but still, 🙄.
#PanCholLiveToot

Jonathan Kamens 86 47 Sep 17, 2025

They came in this morning and mopped the floor of my room and the connected bathroom. On the one hand, sure, I guess it's important to keep hospital rooms clean. On the other hand, there ain't nobody here but me, and I'm not exactly tracking in dirt from the outside, and I'm only going to be here for a week, so it seems a bit much to mop the floor while I'm here. 🤷
#PanCholLiveToot

Jonathan Kamens 86 47 Sep 17, 2025

Regarding yesterday's poll <https://federate.social/@jik/115216580243925705>, which there's still time to participate in if you haven't already 😉, I just want to say there's obviously a third option I didn't offer in the poll because everyone who doesn't _love_ cooking would probably have picked it: "good food cooked and cleaned up by others".
Indeed, my definition of a perfect vacation is a week of good food cooked and cleaned up by others.
#PanCholLiveToot

Jonathan Kamens 86 47 (@[email protected])

Here's a #poll that's relevant to my experience in the hospital for this clinical trial. Which would you rather have? A week-long vacation where you eat: #PanCholLiveToot [ ] mediocre food cooked and cleaned up by others [ ] good food cooked and cleaned up by you

federate.social

Jonathan Kamens 86 47 Sep 17, 2025

Today's adventure in computing while trapped in a hospital for a clinical trial…
My computer at home, which is also my SSH jump box and the backup server for my home network, appears to have crashed. D'oh!
I'm going to have to walk my son through rebooting it this evening, which is complicated, because I brought its keyboard with me to the hospital, and booting requires a long encryption password which is normally provided by the YubiKey that's on a chain around my neck.
#PanCholLiveToot

Jonathan Kamens 86 47 Sep 17, 2025

My #PanCholLiveToot friends, I just got some very good news!
No cholera vaccine bacteria were detected in yesterday's sample. This is good for me personally and for the #PanChol vaccine in general.
For me personally, it means there's a good chance I'll be able to go home before the weekend. If today's sample comes back clean tomorrow, then they'll probably start me on prophylactic doxycycline tomorrow and send me home Friday.
(continued)

Jonathan Kamens 86 47 Sep 17, 2025

And while I'd be happy to go home before the weekend, I'm even happier about what this might mean about the efficacy of the vaccine.
If there's no detectable vaccine bacteria in my samples, that likely means the antibodies my body created in response to the original vaccine dose I took last November successfully killed off the booster vaccine bacteria I drank on Monday.
(continued)
#PanCholLiveToot

Jonathan Kamens 86 47 Sep 17, 2025

In other words, THE VACCINE WORKED.
At least, it did for me; it's important to note that two others who preceded me through this trial phase had vaccine detected in their samples so they had to stay longer.
(Now I am wondering if COVID may have something to do with this. We know COVID damages the immune system. I've only had COVID once, but anybody else going through this trial who isn't as COVID-cautious has probably had it multiple times. Will that mess up the study? Hmm.)
#PanCholLiveToot

Jonathan Kamens 86 47 Sep 17, 2025

OK, so, with my son's help as my eyes and hands at home I've figured out why my home computer dropped off the network and fixed it so it won't happen again. This is a crossover #PanCholLiveToot / #TechIsShitDispatch post.
Apparently at some point in the last ten years, the US and EU enacted power-saving regulations for computers which essentially require them to sleep by default when no one is using them.
Because of this, Debian is configured by default to sleep after 20 minutes of idle time.
…

Jonathan Kamens 86 47 Sep 18, 2025

I'm typically logged in all the time on my computer, and I have GNOME configured never to sleep, so this isn't usually a problem. However, earlier today my GNOME session crashed (that's the first shitty tech thing), and twenty minutes later, the GDM greeter put my computer to sleep.
The second shitty aspect of this is that there's no user-friendly way to prevent this from happening. There's literally been a GNOME bug ticket open about this for 7+ years.
Ref: https://gitlab.gnome.org/GNOME/gnome-control-center/-/issues/22
…

auto-suspend can't be disabled when GDM is active (#22) · Issues · GNOME / Settings · GitLab

With GNOME 3.28, system automatically suspends after 20 minutes. That can be adjusted/disabled in system settings - however, it only applies to that particular user session. When GDM...

GitLab

Jonathan Kamens 86 47 Sep 18, 2025

I dug around a bit to figure out the non-user-friendly way of preventing this from happening again. I ended up making two changes, either one of which is probably sufficient by itself, just to be extra-paranoid:
1) I modified /etc/gdm3/greeter.dconf-defaults to disable sleep from the login screen.
2) I completely masked all the sleep and hybernate targets in systemd to prevent them from ever being invoked: `sudo systemctl mask sleep.target suspend.target hibernate.target hybrid-sleep.target`.

Jonathan Kamens 86 47 Sep 18, 2025

I know y'all are really here to read about the bad hospital food, so…
Last night and tonight I ordered pre-packaged kosher meals instead of meals cooked by the hospital kitchen, so I could have some meat and because I wasn't interested in the entrées on the menu.
Last night's pot roast was decent, but the meat portion was too small.
Tonight's chicken dinner (pictured below) was terrible. The potatoes were disgusting, and the meat serving size was even smaller than last night's.
#PanCholLiveToot

Jonathan Kamens 86 47 Sep 18, 2025

I've been eating pre-packaged kosher meals for decades, so I can say with confidence that this is shrinkflation in action. They've dramatically reduced how much food they're putting in these meals, and I'm sure they haven't reduced the prices to match!
According to Sodexo, my meal had only 390 calories, certainly not enough for an adult. So this isn't just an economic issue, it's also a health issue.
#PanCholLiveToot

Jonathan Kamens 86 47 Sep 18, 2025

Look, I'm not saying I just ate the whole 8 ounce block of cheese I brought from home to the hospital, and I'm not saying I _didn't_ just eat the whole 8 ounce block of cheese I brought from home to the hospital, but there's an empty cheese wrapper sitting on the tray table next to me, so draw your own conclusions.
#PanCholLiveToot

Jonathan Kamens 86 47 Sep 18, 2025

One trivial and one significant update…
Trivial: Breakfast this morning was OK. I ordered a double order of pancakes and they were decent.
Significant: Yesterday's sample came back positive so I'm stuck here through Sunday. 🫤
#PanCholLiveToot

Jonathan Kamens 86 47 Sep 18, 2025

This was lunch today. "Forest mushroom pizzetta" with basil, sauce, roasted wild mushrooms, roma tomatoes, baby spinach, and shaved parmesan cheese. It's one of the weekly specials. It was GOOD.
In related news, it took until my ninth meal order, this morning, for the rep on the phone to mention, when I asked for the calorie count, that I could ask the nurse to add a flag to my chart to have calorie info printed on my meal receipts. Wish they'd told me on Monday!
#PanCholLiveToot

Jonathan Kamens 86 47 Sep 18, 2025

Today I learned, from a study doctor who stopped by to check in on me (which they do daily), that there's a separate food service menu reserved for patients who are having trouble gaining weight, e.g., people on chemo. It is _very different_ from the menu I get to order from (think high-fat, high-sugar).
I suppose I'm a little jealous, but obviously I'd rather be stuck with the regular menu than have to go through chemo. The folks on that menu have earned every delicious bite.
#PanCholLiveToot

Jonathan Kamens 86 47 Sep 18, 2025

In other news, though I'm only required to "capture" one stool sample daily, I forgot that I already did today's sample early this morning and just buzzed the nurse and tried to hand her a second collection tub. She was like, "I don't need that, you already gave us a sample today." Woops, D'oh! and all that jazz.
#PanCholLiveToot

cs Sep 18, 2025

@jik is this yours?

https://clinicaltrials.gov/study/NCT07107516

Paul Sep 18, 2025

@jik Shouldn't it be a thing you are told before getting the food?

Jonathan Kamens 86 47 Sep 18, 2025

@plwt If a doctor in the hospital puts some sort of caloric restriction in a patient's chart, e.g., can't eat more than <x> calories per meal or must eat at least <x> calories per meal, then that would be enforced when the patient orders their meals, i.e., they wouldn't let the patient order a meal that violates the restriction.
If it's just informational, however, then they can just print it on the receipt as they're now doing for me.

jonas Sep 18, 2025

@jik does this mean the vaccine is not effective?

Jonathan Kamens 86 47 Sep 18, 2025

@ripple No, not necessarily. It could just as easily mean that my immune system is taking a few days to ramp up production of antibodies. That's pretty normal.

Flying_Donny for democracy Sep 20, 2025

@jik Rats!

Unredacted Epstein files now Sep 18, 2025

@jik I've been there...

Nonya Bidniss Sep 18, 2025

@jik Good to know. I can't have that happening on my media server when I travel. Still hanging onto Win10 by my fingernails

Steve Gisselbrecht Sep 17, 2025

Even in Paris (where, let me tell you, good food cooked by others is NOT A PROBLEM) we like to get a room with a kitchenette so we can go to the market and cook at least one night. The produce in the markets is incredible and I LOVE TO COOK SO MUCH!

jonas Sep 16, 2025

@jik I’ve read and seen enough horror/sci-fi to be extremely suspicious of that scenario!

wevdap Sep 16, 2025

@jik I’ve always enjoyed the fact that Greenwich’s local paper at least was the Greenwich Time. Not Times, Time, as in the standard established by a different Greenwich.