Hospitals and Long Term Treatment: Chronic illness thread

1535456585962

Posts

  • UrielUriel Registered User regular
    Hope you are feeling okay munkus

    I'm getting my first ever scope on Friday and I'm so nervous. Mostly about the prep of clear liquid diet all day tomorrow.

  • KetarKetar Come on upstairs we're having a partyRegistered User regular
    Hope you are feeling okay munkus

    I'm getting my first ever scope on Friday and I'm so nervous. Mostly about the prep of clear liquid diet all day tomorrow.

    The prep isn't fun, but it wasn't as bad as I was expecting.

  • UrielUriel Registered User regular
    Ketar wrote: »
    Hope you are feeling okay munkus

    I'm getting my first ever scope on Friday and I'm so nervous. Mostly about the prep of clear liquid diet all day tomorrow.

    The prep isn't fun, but it wasn't as bad as I was expecting.

    I mostly don't know how I'm going to not have a psychotic break with the crazy blood sugar roller coaster I'll be on

    Especially since my actual appointment isn't until 3pm Friday which means it's not just 24 hours but closer to 36.

  • Munkus BeaverMunkus Beaver You don't have to attend every argument you are invited to. Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPA regular
    if they have you drink golitely be sure to mix it with kool-aid or something

    Humor can be dissected as a frog can, but dies in the process.
  • UrielUriel Registered User regular
    edited December 2021
    They got me doing a full bottle of miralax powder and 6 Bisacodyl tablets over the prep period.

    Which seems wild that they have me drinking half the powder in 32 oz of gatorade at 5pm tomorrow and the rest with another gatorade the next morning.

    Wonder if I'll even get to sleep tomorrow night.

    Uriel on
  • Munkus BeaverMunkus Beaver You don't have to attend every argument you are invited to. Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPA regular
    They got me doing a full bottle of miralax powder and 6 Bisacodyl tablets over the prep period.

    Which seems wild that they have me drinking half the powder in 32 oz of gatorade at 5pm tomorrow and the rest with another gatorade the next morning.

    Wonder if I'll even get to sleep tomorrow night.

    Probably not, no.

    Humor can be dissected as a frog can, but dies in the process.
  • UrielUriel Registered User regular
    Bummer!

  • Ashaman42Ashaman42 Registered User regular
    All I know is the evening of my prep we watched a film, a relatively short film. It took 3 & 1/2 hours we had to pause it so often. I didn't dare trust a fart sitting on the sofa that's for sure.

    But in the grand scheme of things it weren't so bad and was worth doing so...

    Good luck and Godspeed.

  • UrielUriel Registered User regular
    My stomach is kinda upset already tonight too. Hopefully I'm not going to be awake for two days straight leading up to this...

  • UrielUriel Registered User regular
    edited December 2021
    First glass of miralax Gatorade down and so far so good

    Getting really tired without solid food in me though

    Okay that's 119g of that powder down... Uh. Hope it doesn't sneak up on me too badly.

    Uriel on
  • UrielUriel Registered User regular
    edited December 2021
    That wasn't super fun


    CW medical horror
    My anathesia wasn't working great so I had to listen to them the whole time and feel then root around up in there.

    Uriel on
  • discriderdiscrider Registered User regular
    Yeesh.
    I mean, I'd like to think that if it were me that I'd be getting downright conversational with the Doc at this point.
    Rather than freaking.
    As I'm a frequent flyer but never had that happen to me.
    But yeesh.

    Sorry to hear that happened to you.

  • UrielUriel Registered User regular
    edited December 2021
    Yeah she had the leave like immediately after I woke the rest of the way up (as they wheeled me out of the OR I was already totally aware) but I'm not mad at her really it's really more the anathesiaologist's job you'd think.

    Also though they did relay to me that I will need to get these done every 3 years now

    Uriel on
  • Ashaman42Ashaman42 Registered User regular
    I don't know if I had a different 'scope but I weren't knocked out just given a bit of a relaxant/sedative. Like I was expected to be concious and coherent for the process but specifically not expected to drive home afterwards.

    And for mine, well you're generally meant to stay in a roughly fetal position. But. Well. Apparently I'm twistier incide than most so I ended up on my back with a nurse bearing down on my abdomen with both hands to help the 'scope turn the corner. That was uncomfortable to say the least.

    It wasn't a fun day that's for sure.

  • UrielUriel Registered User regular
    I wonder when or if they will call me back to follow up on my results or whatever?

    Sometime this week before Friday I would think?

  • DixonDixon Screwed...possibly doomed CanadaRegistered User regular
    Man, I didn't have any anaesthetic for the bottom scope...when they take the biopsies, that was the part that generated discomfort for me.

    The scope down my throat they gave me relaxant, but i was still conscious and had to actively swallow to get it down. That was fairly brutal, mind this was 15+ years ago now.

  • UrielUriel Registered User regular
    I have Barretts esophagus so I'm supposed to get throat scopes every couple years but I was way overdue

    I had been having bathroom issues and found out my biodad had colon cancer at some point when I met him for the first time in decades before the pandemic. So they decided to do both this time.

    They did find some polyps apparently which they took... Haven't heard anything else though yet

  • SanderJKSanderJK Crocodylus Pontifex Sinterklasicus Madrid, 3000 ADRegistered User regular
    As someone who just had things go bad in my family, tissue tests are a 5 day growth apparently so that's the minimum time.

    Steam: SanderJK Origin: SanderJK
  • UrielUriel Registered User regular
    edited December 2021
    Good to know. Thank you. I couldn't find anything about it online.

    Awesomed for the gratitude for the answer by the way not the bad news you got

    I've honestly been struggling to get to sleep over it the past few nights

    Uriel on
  • UrielUriel Registered User regular
    edited December 2021
    My pathology report hit my MyChart page so they'll probably go over it with me soon.

    Reading over it myself it sounds like I'm ok for now

    The term in the report was tubovillous adenoma(s) with no mention of dysplasia in the report except to say there was no sign of it in the esophageal biopsy they took.

    Still probably good that they did it early given my risk factors and family history.

    Gonna suck getting these every 3 years though.

    Uriel on
  • ButlerButler 89 episodes or bust Registered User regular
    You know how sometimes you have a brief but acute stressful situation, and while it's happening you feel like crap, and then when it's over you feel better?

    Does anyone else ever find that sometimes the crap feeling just... stays switched on, even though you're not worried any more? Like earlier today, there was an online submission that I had to re-format minutes before the deadline because I'd missed a detail in an earlier e-mail. Luckily I got it in with a couple of minutes to spare, which should have been the end of it, but it's been a couple of hours now and it's like the cortisol spigot in my brain is jammed open or something. I have ADHD by the way, maybe this is something associated that I didn't know about?

  • tynictynic PICNIC BADASS Registered User, ClubPA regular
    Oh, yeah, always. It takes me hours or even days to destress after a very stressful event or situation. I find going for a long walk in a different environment helps a bit.

  • ButlerButler 89 episodes or bust Registered User regular
    ...it also occurs to me now that working 15 hours straight yesterday may have had something to do with it. Possibly.

  • MillMill Registered User regular
    Well this year is sucking so far on getting my ankylosing spondylitis taken care of. Two incomplete infusion now because I've had a reaction to the infusion. Hospital still can't rule out an allergic reaction, nor can they confirm that is is. So basic research, seems to indicate that I might not be having an allergic reaction because the reaction isn't immediate (like get 15 minutes in before things go to shit), not developing hives and breathing levels out to where it needs to be fairly quickly. I have a familial tremor, so that probably makes things look like a bigger deal then they actually are since it magnifies any shaking I get from nervousness, stress or cold (definitely had the last two).

    Also seeing signs that my current doc might not be going about this in the best manner. I've been off of biologics for three years now and when I first went on them, my previous doctor loaded my system up first, so I wasn't getting full does at the start. Where current doctor is doing that and that could very well be the issue here. My body needs to get use to the stuff and I do notice limberness returning with just a little of the infusion getting down, so for all I know, my body might not be reacting to the infusion specifically, but could be reacting all the crap being freed up by the inflation going down.

    Regardless, I've conclude that I need to get out of this state in order to ensure that I can get continued medical care and I'm think I just can't get what I need in the state of Virginia. Granted, I already have to move further north since I and my roommates have concluded that the arrangement isn't going to work. Bit annoyed with one because it's clear now they didn't want to stick with the arrangement last year, but instead of saying that, they kept their mouth shut because they still felt that the border's rent money was needed and now that both of them have good jobs, they don't need money. Anyways, would have loved to have known last year because instead of getting stuff setup in the Hampton Roads area, I could have gotten it in place for where I'm going to now; especially, since I didn't have anything. Instead now I'm really fucking hating "we're out of network" and can't see new patients till September at the earliest. This also makes me dread moving out of state, which I need to do (going to look into whether John Hopkins would be a good landing point) because I know Virginia Medicaid doesn't go over state lines and there are probably silly wait times just to see I doc.

    I guess, just wanted to vent because it sucks to have untreated ankylosing spondylitis to begin with and I absolutely hate how the current US healthcare system just makes it a shit show to deal with. The US doesn't have the best healthcare in the world and I'm sick and tired of conservatives pissing and moaning about unemployed people like me being on medicaid, while they continue to ensure that it's really fucking hard for me to get off of it. I'd love to have my life back and not have it held down my my ankylosing spondylitis, but really hard to do when the US healthcare system is so fucking shit.

  • furlionfurlion Riskbreaker Lea MondeRegistered User regular
    That sucks. My mom has been having quite a time just getting basic rheumatoid arthritis treated. Can't imagine having something even more esoteric.

    sig.gif Gamertag: KL Retribution
    PSN:Furlion
  • ArtereisArtereis Registered User regular
    I was diagnosed with peripheral spondyloarithris after my daughter was born. I just finished up a couple months of sulfasalazine without any real change in symptoms so they're moving me to methotrexate now. If that doesn't work, then we'll start trying biologics.

  • webguy20webguy20 I spend too much time on the Internet Registered User regular
    Just got out of the hospital after having two blood clots removed from my lungs. Been having respiratory trouble for months but my regular doctor was just trying things like allergy meds and asthma meds. Finally got bad enough Wednesday that i had my wife drive me to the ER while i could still move under my own power.

    Being described as “medically interesting” is the last thing you want to hear in the ER.

    Steam ID: Webguy20
    Origin ID: Discgolfer27
    Untappd ID: Discgolfer1981
  • TynnanTynnan seldom correct, never unsure Registered User regular
    webguy20 wrote: »
    Just got out of the hospital after having two blood clots removed from my lungs. Been having respiratory trouble for months but my regular doctor was just trying things like allergy meds and asthma meds. Finally got bad enough Wednesday that i had my wife drive me to the ER while i could still move under my own power.

    Being described as “medically interesting” is the last thing you want to hear in the ER.

    Oh no! Glad you're out of the hospital. PEs are scary.

  • MillMill Registered User regular
    Success, apparently the issue was that they really did need to start me back up from scratch for the remicade infusions. So now it's just a matter of juggling things so that I avoid having lapses in the infusions, while I'm in the process of moving. If things continue, that should solve a number of issues from my ankylosing spondylitis that are making it hard to function.

    Got both the nurses that administered the last infusion that has to be terminated and one of them said, that I likely got close to or a little above the dosage that would be administered for a load and I know the retina specialist said the inflammation in the back of left eye and the left retina was down. So with luck, maybe after another infusion or two, I'll have proper vision in the left eye again. Still need to work in a physical therapist and see what mobility can be reclaimed. Just got to hope that maybe more funding will be put into ankylosing spondylitis research and other illnesses that cause similar problems and someone figures out more solutions to slowing down the impacts and maybe reversing the damage in a much safer fashion.

    Still hate our healthcare system. Will just have to hope I can use what few professional networks I have to land a job that will let me move to a state with better healthcare and into a location with better healthcare services. Ideally, in a way that won't result in me getting turbo fucked again, where I end up not having coverage.

  • furlionfurlion Riskbreaker Lea MondeRegistered User regular
    That's awesome that you got everything sorted out.

    Has anyone in the thread had ECT (electroconvulsive therapy) before? To treat depression specifically. Thinking about getting it down later this year. After 11 years and over 15 antidepressants I am just so tired of being miserable.

    sig.gif Gamertag: KL Retribution
    PSN:Furlion
  • SorceSorce Not ThereRegistered User regular
    edited May 2022
    Looks like one of my brain pills went from $5 a month to $250 no longer affordable. Ah well, it didn't seem like it was really working anyway.

    edit: Aha! Mail order may save me yet.

    Sorce on
    sig.gif
  • webguy20webguy20 I spend too much time on the Internet Registered User regular
    One side effect I didn't realize from the blood clot stuff is now whenever my leg twitches or has a minor ache its like "Is that a new blood clot? Is it an existing one moving? Are the blood thinners doing their job?" It's mildly stressful.

    Steam ID: Webguy20
    Origin ID: Discgolfer27
    Untappd ID: Discgolfer1981
  • Munkus BeaverMunkus Beaver You don't have to attend every argument you are invited to. Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPA regular
    webguy20 wrote: »
    One side effect I didn't realize from the blood clot stuff is now whenever my leg twitches or has a minor ache its like "Is that a new blood clot? Is it an existing one moving? Are the blood thinners doing their job?" It's mildly stressful.

    I feel ya man. That's life with a chronic illness.

    Humor can be dissected as a frog can, but dies in the process.
  • webguy20webguy20 I spend too much time on the Internet Registered User regular
    edited May 2022
    webguy20 wrote: »
    One side effect I didn't realize from the blood clot stuff is now whenever my leg twitches or has a minor ache its like "Is that a new blood clot? Is it an existing one moving? Are the blood thinners doing their job?" It's mildly stressful.

    I feel ya man. That's life with a chronic illness.

    That's true enough, I just wish there was an easy way to check for clots, versus having to get an ultrasound or CT scan. I can only go by how I feel. Luckily I have a blood pressure cuff and watch that can do heart rate and o2, so I can see if my vitals get out of whack again. That's nice at least.

    webguy20 on
    Steam ID: Webguy20
    Origin ID: Discgolfer27
    Untappd ID: Discgolfer1981
  • Munkus BeaverMunkus Beaver You don't have to attend every argument you are invited to. Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPA regular
    webguy20 wrote: »
    webguy20 wrote: »
    One side effect I didn't realize from the blood clot stuff is now whenever my leg twitches or has a minor ache its like "Is that a new blood clot? Is it an existing one moving? Are the blood thinners doing their job?" It's mildly stressful.

    I feel ya man. That's life with a chronic illness.

    That's true enough, I just wish there was an easy way to check for clots, versus having to get an ultrasound or CT scan. I can only go by how I feel. Luckily I have a blood pressure cuff and watch that can do heart rate and o2, so I can see if my vitals get out of whack again. That's nice at least.

    I've had some stomach pain the past few days and it's been a fun game "Is this something mundane or is it an obstruction"

    It is a shitty part of having a chronic illness.

    Humor can be dissected as a frog can, but dies in the process.
  • Phoenix-DPhoenix-D Registered User regular
    edited May 2022
    webguy20 wrote: »
    webguy20 wrote: »
    One side effect I didn't realize from the blood clot stuff is now whenever my leg twitches or has a minor ache its like "Is that a new blood clot? Is it an existing one moving? Are the blood thinners doing their job?" It's mildly stressful.

    I feel ya man. That's life with a chronic illness.

    That's true enough, I just wish there was an easy way to check for clots, versus having to get an ultrasound or CT scan. I can only go by how I feel. Luckily I have a blood pressure cuff and watch that can do heart rate and o2, so I can see if my vitals get out of whack again. That's nice at least.

    Had to go in for the clot workup myself recently and yeah it sucks having to get the full scan. Great way to skip the ER line at least :rotate:

    In my case it wasn't, but we still don't know what I'm dealing with so I get to play the mental game of "is there a small one they missed that's just hanging out?" even though I know that's unlikely.

    Phoenix-D on
  • webguy20webguy20 I spend too much time on the Internet Registered User regular
    edited May 2022
    Phoenix-D wrote: »
    webguy20 wrote: »
    webguy20 wrote: »
    One side effect I didn't realize from the blood clot stuff is now whenever my leg twitches or has a minor ache its like "Is that a new blood clot? Is it an existing one moving? Are the blood thinners doing their job?" It's mildly stressful.

    I feel ya man. That's life with a chronic illness.

    That's true enough, I just wish there was an easy way to check for clots, versus having to get an ultrasound or CT scan. I can only go by how I feel. Luckily I have a blood pressure cuff and watch that can do heart rate and o2, so I can see if my vitals get out of whack again. That's nice at least.

    Had to go in for the clot workup myself recently and yeah it sucks having to get the full scan. Great way to skip the ER line at least :rotate:

    In my case it wasn't, but we still don't know what I'm dealing with so I get to play the mental game of "is there a small one they missed that's just hanging out?" even though I know that's unlikely.

    :bro:

    Hope you figure it out. I didn't realize how much of a challenge it would be going through all of this. You get to speed run every type of imaging machine there is though, so thats fun I suppose. Did you do the CT scan and the highlighting fluid that makes you feel hot and like you're gonna piss yourself? That was a trip for me, glad they gave me a lot of forewarning.

    One positive about the hospital stay was it re-kindled in me a love of the Peach Pieces Dole fruit cups.

    webguy20 on
    Steam ID: Webguy20
    Origin ID: Discgolfer27
    Untappd ID: Discgolfer1981
  • Phoenix-DPhoenix-D Registered User regular
    webguy20 wrote: »
    Phoenix-D wrote: »
    webguy20 wrote: »
    webguy20 wrote: »
    One side effect I didn't realize from the blood clot stuff is now whenever my leg twitches or has a minor ache its like "Is that a new blood clot? Is it an existing one moving? Are the blood thinners doing their job?" It's mildly stressful.

    I feel ya man. That's life with a chronic illness.

    That's true enough, I just wish there was an easy way to check for clots, versus having to get an ultrasound or CT scan. I can only go by how I feel. Luckily I have a blood pressure cuff and watch that can do heart rate and o2, so I can see if my vitals get out of whack again. That's nice at least.

    Had to go in for the clot workup myself recently and yeah it sucks having to get the full scan. Great way to skip the ER line at least :rotate:

    In my case it wasn't, but we still don't know what I'm dealing with so I get to play the mental game of "is there a small one they missed that's just hanging out?" even though I know that's unlikely.

    :bro:

    Hope you figure it out. I didn't realize how much of a challenge it would be going through all of this. You get to speed run every type of imaging machine there is though, so thats fun I suppose. Did you do the CT scan and the highlighting fluid that makes you feel hot and like you're gonna piss yourself? That was a trip for me, glad they gave me a lot of forewarning.

    One positive about the hospital stay was it re-kindled in me a love of the Peach Pieces Dole fruit cups.

    I got a EKG, X-ray, CT, MRI and ultrasound. I wasn't trying for a combo bonus, but apparently I got it. And yeah the weird contrast fluid was a thing. I've had it before, so that made it easier. It's definitely extremely WTF the first time. This time though it gave me chest pain which considering what I was getting CT'd for was not fun.

    TBF the ultrasound was because they couldn't find my veins to get an IV in...it is really trippy watching a needle inside your vein. at least this time they didn't threaten to go in my neck.

  • Munkus BeaverMunkus Beaver You don't have to attend every argument you are invited to. Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPA regular
    Well, I feel like shit all the time right now and it gets worse after eating, and then later on I'll get a sharp, stabbing pain suddenly in my side near my ostomy site.

    This means it's likely one of two things: An obstruction or the ostomy is narrowing.

    An obstruction would be real bad. Narrowing would be worse because I just had a revision in December. I can't lose a quarter inch to half an inch of intestines every six months.

    I also am kinda avoiding going to the ER when I normally would for this because I would need pain meds. I would ask for pain meds. And I don't want to do that, because it would trigger all my addiction shit again (I went through some hell after my surgery getting off the pain meds again).

    This sucks.

    Humor can be dissected as a frog can, but dies in the process.
  • webguy20webguy20 I spend too much time on the Internet Registered User regular
    edited May 2022
    Phoenix-D wrote: »
    webguy20 wrote: »
    Phoenix-D wrote: »
    webguy20 wrote: »
    webguy20 wrote: »
    One side effect I didn't realize from the blood clot stuff is now whenever my leg twitches or has a minor ache its like "Is that a new blood clot? Is it an existing one moving? Are the blood thinners doing their job?" It's mildly stressful.

    I feel ya man. That's life with a chronic illness.

    That's true enough, I just wish there was an easy way to check for clots, versus having to get an ultrasound or CT scan. I can only go by how I feel. Luckily I have a blood pressure cuff and watch that can do heart rate and o2, so I can see if my vitals get out of whack again. That's nice at least.

    Had to go in for the clot workup myself recently and yeah it sucks having to get the full scan. Great way to skip the ER line at least :rotate:

    In my case it wasn't, but we still don't know what I'm dealing with so I get to play the mental game of "is there a small one they missed that's just hanging out?" even though I know that's unlikely.

    :bro:

    Hope you figure it out. I didn't realize how much of a challenge it would be going through all of this. You get to speed run every type of imaging machine there is though, so thats fun I suppose. Did you do the CT scan and the highlighting fluid that makes you feel hot and like you're gonna piss yourself? That was a trip for me, glad they gave me a lot of forewarning.

    One positive about the hospital stay was it re-kindled in me a love of the Peach Pieces Dole fruit cups.

    I got a EKG, X-ray, CT, MRI and ultrasound. I wasn't trying for a combo bonus, but apparently I got it. And yeah the weird contrast fluid was a thing. I've had it before, so that made it easier. It's definitely extremely WTF the first time. This time though it gave me chest pain which considering what I was getting CT'd for was not fun.

    TBF the ultrasound was because they couldn't find my veins to get an IV in...it is really trippy watching a needle inside your vein. at least this time they didn't threaten to go in my neck.

    Yea I had the ultrasound for IV in my left arm. I still have the bruise two and a half weeks later. I haven't done the MRI yet but I get to do that in the next month because when they were reviewing the CT scan for my blood clots they found a mass in my neck. They are almost positive it's either a benign mass or an overgrown thyroid and not something cancerous, but they want more data. So that's going to be a fun adventure.

    webguy20 on
    Steam ID: Webguy20
    Origin ID: Discgolfer27
    Untappd ID: Discgolfer1981
Sign In or Register to comment.