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   Jonathan Kamens (jik@federate.social)'s status on Friday, 01-Nov-2024 22:04:04 JST Jonathan Kamens

   This is the room I'm trapped in for the next week while participating in a #clinicalTrial for a potentially revolutionary #cholera vaccine called #PanChol invented here at Brigham & Women's hospital (#BWH) in #Boston. I'll basically be doing my regular job all week while helping save lives.
   I'm in isolation because if I were to shed the vaccine and somebody else picked it up from me it could cause a false cholera outbreak panic.
   I'll be posting about my experience under #PanCholLiveToot. #AMA!

   • Embed this notice
     Jonathan Kamens (jik@federate.social)'s status on Friday, 01-Nov-2024 22:03:47 JST Jonathan Kamens

     in reply to

     Good morning! It's day 5 in the hospital as a guinea pig for a cholera vaccine. I'm feeling good. How are you?
     My hospital phone is broken again, so again my nurse had to order my breakfast. I hope it's fixed in time for me to order lunch!
     The entire time I've been here, I've had trouble reaching only one site on the guest wifi… https://xkcd.com. Did an xkcd strip piss off an administrator so he ordered IT to block the site hospital-wide? lol!
     #PanCholLiveToot #xkcd #today

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     Jonathan Kamens (jik@federate.social)'s status on Friday, 01-Nov-2024 22:03:48 JST Jonathan Kamens

     in reply to

     Friday evening I'll start antibiotics to purge the trial vaccine. I've already begun stockpiling extra snacks from food service to take with the antibiotics to avoid stomach upset.
     Saturday they'll test to see if the vaccine has cleared my system. The test takes about a day. If it comes back ok, I'll go home Sunday. Otherwise, I'll go home Monday.
     I'm hoping the side-effects from the antibiotics aren't too severe, because I need to work the polls for 15 hours Tuesday!
     #PanCholLiveToot

     GreenSkyOverMe (Monika) repeated this.
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     Jonathan Kamens (jik@federate.social)'s status on Friday, 01-Nov-2024 22:03:49 JST Jonathan Kamens

     in reply to

     The phone in my room, which I am supposed to use to order my meals from food service, randomly stopped working today some time between when I ordered breakfast and when I tried to order lunch. The nursing staff was not able to figure out what's wrong, so perhaps they've put in a ticket with IT. In the meantime I am going to have to give my food orders to the nurse for them to call in for me. D'oh!
     #PanCholLivetoot

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     Jonathan Kamens (jik@federate.social)'s status on Friday, 01-Nov-2024 22:03:50 JST Jonathan Kamens

     in reply to

     I don't actually have any reimbursable travel expenses for the three appointments before the isolation period, because I rode my motorcycle to/from those appointments and parked it at a bike rack so there were no parking fees. If I had driven they would have paid for my parking.
     However, I didn't want to leave my motorcycle parked on the street for a week, so this week I took the bus to the hospital and will take the bus home at the end. Those bus fares will be reimbursed.
     #PanCholLivetoot

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     Jonathan Kamens (jik@federate.social)'s status on Friday, 01-Nov-2024 22:03:51 JST Jonathan Kamens

     in reply to

     If you haven't participated in a clinical trial before, you may not realize that participants are paid, and expenses are reimbursed.
     For example, for this clinical trial, I will be paid $50 for each of my trips to the hospital preparing for the inpatient stay, and $200 for each day in the hospital during the isolation period. I'll also be reimbursed for my travel expenses.
     I don't do it in the money, but the money makes it a bit more palatable.
     #PanCholLiveToot

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     Jonathan Kamens (jik@federate.social)'s status on Friday, 01-Nov-2024 22:03:52 JST Jonathan Kamens

     in reply to

     #Today is day 4 of my week in isolation while participating in a clinical trial for a new cholera vaccine.
     I've complained in this thread about the hospital food, so I want to acknowledge that today's vegetarian smoky bean chili was excellent. Out of the 9 meals I've had here so far, this is the first I would say that about!
     #PanCholLivetoot

   • Embed this notice
     Jonathan Kamens (jik@federate.social)'s status on Friday, 01-Nov-2024 22:03:53 JST Jonathan Kamens

     in reply to

     It's the start of day 3 of #PanCholLiveToot! So far no reaction to the experimental vaccine (or placebo!).
     #today I want to talk about why it's so important for people to volunteer to participate in clinical trials.
     Simply put, medical advances save lives, and advances are often impossible without human trials.
     Trials are designed to be extremely safe.
     They usually even pay a bit of money (more on that later).
     Please consider volunteering! See my blog for more info: https://blog.kamens.us/2023/03/27/the-easiest-way-in-the-world-to-save-lives-has-been-inside-you-all-along/

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     Jonathan Kamens (jik@federate.social)'s status on Friday, 01-Nov-2024 22:03:54 JST Jonathan Kamens

     in reply to

     Good morning, and welcome to day 2 of #PanCholLiveToot! I slept ok, despite the hospital bed, thanks mostly to the personal pillow I had the foresight to bring with me. Also, the temperature in the room is lovely.
     Breakfast this morning was the same level of mediocre as dinner last night; enough said.
     Apparently hospitals are just as bad at shower design as hotels. The hottest shower available in my room is obtained by turning the handle all the way around and pointing it at "C". *sigh*

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     Jonathan Kamens (jik@federate.social)'s status on Friday, 01-Nov-2024 22:03:55 JST Jonathan Kamens

     in reply to

     I don't want to be too overly dramatic about this, but if you open a new box of tissues, like, for example, the ones they give to patients in the hospital, and it's impossible to pull the first tissue out of the box without a big wad of tissues coming out with it, that's not an accident and it's not poor design, it's theft. The manufacturer has designed their packaging to encourage this wastage so they can sell more tissues.
     Not speaking theoretically. Looking at you, #Medline.
     #PanCholLiveToot

   • Embed this notice
     Jonathan Kamens (jik@federate.social)'s status on Friday, 01-Nov-2024 22:03:57 JST Jonathan Kamens

     in reply to

     There's an old Jewish joke… Two yentes are eating dinner at a Borscht Belt hotel. One says, "The food here is terrible!" The second responds, "Yes, and the portions are so small!"
     Although the portion sizes here are indeed small (I was warned about this by the nurse), I can apparently order essentially whatever I want to make up for it.
     Food is ordered over the phone; ordering digitally on-screen in the room is not an option here like it is at some other hospitals.
     #PanCholLiveToot

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     Jonathan Kamens (jik@federate.social)'s status on Friday, 01-Nov-2024 22:03:58 JST Jonathan Kamens

     in reply to

     • Amy Maybe

     So, @APBBlue asked elsewhere in the thread how the food is in the hospital.
     It's not great so far.
     For dinner I ordered pesto crusted whitefish, steamed broccoli, diet ginger ale, fruit cup, and tartar sauce.
     What I got is shown below (for scale, note that the ginger ale is only 7.5oz, not a full-size 12oz can).
     The steamed broccoli was fine. The chef apparently thinks the primary ingredient in pesto is salt. The cantaloupe in the fruit cup was not entirely fresh.
     (continued)
     #PanCholLiveToot

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     Jonathan Kamens (jik@federate.social)'s status on Friday, 01-Nov-2024 22:03:59 JST Jonathan Kamens

     in reply to

     I'm usually pretty good with blood draws—I've been told I have "good veins"—but alas, today when they did the intake blood draw my vein decided to stop cooperating shortly before the end so they had to stick me again in the other arm to get the last two vials of blood they needed.
     I think it's probably because I'm a little dehydrated right now (I'm behind on my red rooibos tea!).
     Fortunately the mid-week and end-of-week blood draws are for much less blood.
     #PanCholLiveToot

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     Jonathan Kamens (jik@federate.social)'s status on Friday, 01-Nov-2024 22:04:00 JST Jonathan Kamens

     in reply to

     Another important (well, I think so, anyway) thing I brought with me to the hospital from home is my memory foam pillow. I don't know about y'all, but I am uber-picky about pillows, and hospital pillows tend to be particularly terrible. I can't say I'm looking forward to sleeping alone in a hospital bed for the next week, but at least I'll be doing it with a good pillow.
     #PanCholLiveToot

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     Jonathan Kamens (jik@federate.social)'s status on Friday, 01-Nov-2024 22:04:01 JST Jonathan Kamens

     in reply to

     This is the electric kettle I brought with me to the hospital because I drink a LOT of red rooibos tea and it will be easier for both me and the nurses if I don't have to keep asking them to bring me hot water throughout the day.
     Today's nurse, who did my intake, said to me, "I don't think you're supposed to have that kettle in the hospital, but I won't tell anybody if you don't." Let's hope all the nurses for the next week are similarly chill.
     #PanCholLiveToot

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     Jonathan Kamens (jik@federate.social)'s status on Friday, 01-Nov-2024 22:04:02 JST Jonathan Kamens

     in reply to

     Alas, this hospital no longer screens everyone for #COVID upon admission. I asked them if they could test me specifically, since I'd just spent several days in and out of a different hospital helping my uncle after his surgery and I know at least one person I interacted with there was COVID+ (I was masked, of course). Not for my benefit, but for the benefit of the nurses taking care of me for the next week. She said she'd ask the doctor to put in a test order if possible.
     #PanCholLiveToot

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     Jonathan Kamens (jik@federate.social)'s status on Friday, 01-Nov-2024 22:04:03 JST Jonathan Kamens

     in reply to

     I just took the trial vaccine—or a placebo!—and now they're monitoring me to make sure there are no immediate adverse reactions. That's very unlikely, since 40+ people have already gone through this trial (and more through earlier ones) and none of them had reactions.
     The vaccine is taken by drinking a small bottle of solution (about 4 oz I think). It tastes gross, but not so gross that you gag on it. Very salty. It took three tips of the bottle for me to get it all down.
     #PanCholLiveToot

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     Jonathan Kamens (jik@federate.social)'s status on Monday, 04-Nov-2024 03:36:00 JST Jonathan Kamens

     in reply to

     This is what occurred to me as I was eating the alu matar: what if I'm an Indian-American, accustomed to eating Indian food, and I come into the hospital, and there is literally one food choice for the entire week which is familiar to me?
     I've been able to find something on the menu to eat for every meal while I've been here, but the menu is SO AMERICAN. What if that's not the kind of food I eat? It would suck a whole lot, right?
     (continued)
     #PanCholLiveToot

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     Jonathan Kamens (jik@federate.social)'s status on Monday, 04-Nov-2024 03:36:01 JST Jonathan Kamens

     in reply to

     I've posted a lot about the hospital food this week, but something new occurred to me today that is worth commenting on.
     One of today's entrée options, which I ordered, is "Indian potato and pea curry." The meal slip on my tray calls it "alu matar," which I looked up, and indeed that's what it was.
     It was good, with a bit of a kick.
     This is, literally, the only Indian cuisine item on the menu for the entire week.
     (continued)
     #PanCholLiveToot #food #cuisine #healthcare #hospital

     anban repeated this.
   • Embed this notice
     Jonathan Kamens (jik@federate.social)'s status on Monday, 04-Nov-2024 03:36:02 JST Jonathan Kamens

     in reply to

     Man, since I've been in isolation in the hospital all week participating in a clinical trial, #Trump's mic is getting more action than I am.
     #PanCholLiveToot #politics #USPol

   • Embed this notice
     Jonathan Kamens (jik@federate.social)'s status on Monday, 04-Nov-2024 03:36:04 JST Jonathan Kamens

     in reply to

     In other clinical trial news, last night I finally used the TV provided in the room for the first time since I got here Monday morning: I binged the fourth and final season of #TheUmbrellaAcademy off of #Netflix.
     No spoilers, but I enjoyed the episodes and found the ending satisfying.
     Definitely worth staying up late to watch.
     #PanCholLiveToot

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     Jonathan Kamens (jik@federate.social)'s status on Monday, 04-Nov-2024 03:36:05 JST Jonathan Kamens

     in reply to

     This means there is a small risk of "accidental unblinding" at this point in the study: if someone's sample tests positive for cholera on the sixth day after they've started the antibiotics, then the researchers know they got the real vaccine instead of the placebo! This is considered a necessary, acceptable trade-off, because of the public-safety aspect of making sure people are clean before they go home.
     It's happened a small number of times out of all the study participants.
     #PanCholLiveToot

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     Jonathan Kamens (jik@federate.social)'s status on Monday, 04-Nov-2024 03:36:06 JST Jonathan Kamens

     in reply to

     For the first 5 days of the study, my samples went to a blinded lab for analysis, because researchers aren't supposed to know until the end of the study who got the vaccine vs the placebo.
     However, they need to confirm that the vaccine is no longer in my system before I go home, so today's sample—after I started the antibiotics—will be tested by an unblinded lab.
     Most people are clean by now; the few that aren't need to stay another day.
     (continued)
     #PanCholLiveToot

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     Jonathan Kamens (jik@federate.social)'s status on Monday, 04-Nov-2024 03:36:07 JST Jonathan Kamens

     in reply to

     And this is what the "hat" looks like when it's ready to "collect" a sample:
     (continued)
     #PanCholLiveToot

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     Jonathan Kamens (jik@federate.social)'s status on Monday, 04-Nov-2024 03:36:08 JST Jonathan Kamens

     in reply to

     The way the study measures that is, as you might have guessed by now, by analyzing my poop to determine whether there is cholera vaccine in it.
     To facilitate that, I have to poop in what the nurses call a "hat" (because it kind of looks like an upside-down hat if you squint at it) instead of directly into the toilet. This is what the "hat" looks like when it's not "deployed":
     (continued)
     #PanCholLiveToot

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     Jonathan Kamens (jik@federate.social)'s status on Monday, 04-Nov-2024 03:36:09 JST Jonathan Kamens

     in reply to

     Because this trial involves a live, attenuated cholera vaccine, an important measure of success is, does the vaccine multiply and take up residence in the intestines of trial subjects?
     This is important both because the bacteria need to multiply to give the immune system something to resist, and because one reasons this vaccine immunizes quickly is that once it populates the gut, it prevents "real" (unattenuated) cholera bacteria from doing so.
     (continued)
     #PanCholLiveToot

   • Embed this notice
     Jonathan Kamens (jik@federate.social)'s status on Monday, 04-Nov-2024 03:36:10 JST Jonathan Kamens

     in reply to

     There's an aspect of this clinical trial I've hesitated to post about because it involves poop 😉, but it's significant, so I suppose I should spill. There will be no pictures of poop, I promise.
     Cholera is a gut bacteria: it lives in people's intestines and is shed in poop. It spreads wherever people are exposed to raw sewage, ergo it's a big problem in refugee camps, disaster areas, etc. — anywhere without a reliable, working sewage system.
     (continued)
     #PanCholLiveToot

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     Jonathan Kamens (jik@federate.social)'s status on Monday, 04-Nov-2024 03:36:11 JST Jonathan Kamens

     in reply to

     Day 6 of cholera vaccine clinical trial isolation!
     I took my 2nd dose of antibiotics this morning. The nurses were right: the antibiotics are making me feel worse than the vaccine (or placebo!) did. Quite a bit of nausea this morning. It took a couple of hours to pass.
     In other news, I figured out why xkcd.com is blocked on the hospital wifi: it's misclassified as a porn site because it starts with "x" and ends with ".com". Don't ask me how I figured it out, I won't tell. 😂
     #PanCholLiveToot

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     Jonathan Kamens (jik@federate.social)'s status on Monday, 04-Nov-2024 03:36:12 JST Jonathan Kamens

     in reply to

     Well, I just took the first dose of antibiotics, which will clear the cholera vaccine from my system, hopefully within 24 hours, so that I can go home Sunday morning.
     Which is kind of important since my wife called right before I took the medicine to tell me that one of our cats is in the hospital and not doing well and quite possibly won't make it through the weekend.
     Please enjoy this photo of the noble #Lancelot who is not doing well. 😿
     #PanCholLiveToot #CatsOfMastodon

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     Jonathan Kamens (jik@federate.social)'s status on Monday, 04-Nov-2024 03:36:13 JST Jonathan Kamens

     in reply to

     Apparently the hospital food service thinks "baked lentil shepherd's pie" means a pile of lentils with a scoop of mashed potatoes in the middle of it. #wtaf #smdh #yhgtbfkmwts #PanCholLiveToot

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     Jonathan Kamens (jik@federate.social)'s status on Monday, 04-Nov-2024 03:36:15 JST Jonathan Kamens

     in reply to

     I'm no hero for participating in this trial. Hanging out in a comfortable room for a week, eating perfectly adequate food, playing on my laptop and phone, and doing my job, all while getting paid extra for it, really isn't a huge burden.
     The real hero is my wife! She has a job, AND she's taking care of our two kids at home and our three cats one of whom is sick, AND she's listening to me complain on the phone every day about my difficult uncle and his difficult health problems.
     #PanCholLiveToot