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

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 Sep 16, 2025

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

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.

Jered Floyd Sep 17, 2025

@jik lots of challenges with this poll. “Vacation” is a bit biasing, as is cooking for oneself (vs family). I’m fortunate to have a spouse who cooks most nights, and I also enjoy cooking (but not as much solo).

However, if I was in a hospital but healthy, had access to ingredients, and no child/chore responsibilities, I would enjoy cooking and answered accordingly.

Jonathan Kamens 86 47 Sep 17, 2025

@jered real reply guy energy in this reply, Jered

Jered Floyd Sep 17, 2025

@jik hah! Sorry — I got caught up in explaining the reasoning for the answer I chose. You’re right.

Philip Mallegol-Hansen Sep 17, 2025

@jik To me, food is one of the greatest pleasures in life.

A week of just mediocre food would be a week I couldn’t enjoy. The vacation would be ruined.

Jonathan Kamens 86 47 Sep 17, 2025

@philip I also believe food is one of the greatest pleasures in live, and I absolutely love to eat good food. But I also like other things, including not needing to worry about cooking or cleaning up meals.
If I had to cook and clean up every meal for a whole week, I'd quickly get tired of doing that, and that displeasure would outweigh (for me) the pleasure from the food.

Philip Mallegol-Hansen Sep 17, 2025

@jik Understandable, I just don’t agree :)

Of course I would RATHER the third option you (presumably purposely) didn’t include: Good food without the work.

But if I have to pick, I’m putting in the work (I already cook at home 5-7 nights a week, the kitchen is largely my domain in this house).

Jonathan Kamens 86 47 Sep 17, 2025

@philip lol yes I was just posting to that effect in the thread when you posted this reply: <https://federate.social/@jik/115220451654206170>

Jonathan Kamens 86 47 (@[email protected])

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

federate.social

Elizabeth Sudduth Sep 17, 2025

@jik I can't help but wonder how many of the people who chose "good food cooked by you" are actually answering about how their vacations actually go: "good food cooked by my spouse".

As the spouse who actually cooks, I'm definitely in favor of vacation involving someone else cooking, even if it's mediocre.

Jonathan Kamens 86 47 Sep 18, 2025

@hydropsyche This is an astute observation. I agree that it seems likely that the number of people who answered the poll as you suggest is probably greater than zero.

Total Sonic Media Sep 16, 2025

@jik @msokolov - a long phone charger is a nice thing to have along too, hospital outlets accessible to the patient are often a few meters away from the bed

Zspeaking Sep 16, 2025

@jik Did a pandemic rewatch of B5. The Night Watch episodes are more chilling than ever.

Jessamyn Sep 15, 2025

@jik I remember this whole process and your hassle with the menus the last time you did this. I think that was when I started following you. I hope the next few days are more hassle free than today was.

Ciara Sep 15, 2025

@jik Hope the computer behaves! It's a great thing you're doing. Hope it all goes well and with minimum catering hiccups from now on.