u/hiddenkobolds

Tags for safety.

CWs: malnutrition, unintentional weight loss, body image, medical trauma, strangulation, surgery/ its effects on the body, descriptions of pain/injury/serious illness, death/fear of

I saw a motility specialist for the first time a bit over a week ago for my refractory gastroparesis. He basically told me that I needed to be admitted immediately to get a surgical feeding tube. I didn't even have time to go home and pack a bag, just straight to the ER.

On the first day, a tech told me to transfer from a wheelchair to a phlebotomy chair, ignoring the fact that I was on oxygen. The cannula hose was too short to allow the transfer, pulled me backwards, and I took a bad fall. I also learned that day that I'd had a prior heart attack.

On the second day, I got a roommate who spent the entire day/night praying at a *scream*. I didn't sleep at all.

On the third day, I was NPO and supposed to get a stress test, but my potassium was too low. When pills didn't get it up, they tried to put it through a standard IV. It literally burned my vein. I had to get a midline. I got a migraine so bad I was literally in tears, while my roommate had to use an interpreter service that also operated at a scream. This was the better part of the day. The stress test was canceled, because they eventually had to treat the headache. This meant I had to consent to a cardiac CT-- and I get anaphylactic reactions to CT contrast-- if I wanted a chance at getting cleared for surgery the next day.

That night, I got my first meal at dinner. It was pure liquid. It still caused blinding, screaming, crying, dry-heaving pain-- the likes of which I've never experienced. I genuinely thought I had a blockage. Later, I got my breathing treatment and my heart rate went to 210. I called for a nurse, who immediately called a code. Turns out I was in AFib with RVR. The code team got there, took one look at me, and then realized my roommate was in full arrest. They spent the next 14 minutes coding her with the curtains drawn. I spent them wondering if I was going to make it long enough for them to finish. I did. By the time they got her back, my rhythm had converted to trigeminy, which is a precursor to VTach. They said in no uncertain terms that if it converted, I probably wouldn't make it. They started working very quickly. I was genuinely terrified. In the middle of this, one of the doctors started questioning my EDS diagnosis. Because, you know, sure. Everything they did worked though, and I was transfered to a ward that was one step shy of the ICU and placed on strict bed rest. I spent the night using a bedside commode--frequently, since they'd pumped me full of fluids. Then they decided to hold my POTS medication. My blood pressure wasn't low, but it wasn't high, so they held it.

On the fourth day, they gave me more steroids and IV Benadryl ahead of the cardiac CT. Then they took me off bed rest and had me get up to do an antiseptic wipe down. I twisted my ankle, badly (IV Benadryl is NOT like the pill form, as it turns out, and EDS makes it really easy for me to hurt myself). I told them I'd hurt myself, and they ignored me. They came and took me for the CT. I had a panic attack. They said, very brusquely, that no one ever reacts with the pre-meds. I was still scared. They injected the contrast and my throat started to close. They said "it should have been fine." It wasn't. Around 2, cardiology cleared me for my 4pm procedure. At 5pm, the nurse came in and said I've been canceled: cardiology took 2.5 hours to write the note confirming what they'd told me. By then it was too late. Even my nurse lost his shit on them. "It's cruel," he said. He was right.

That night was pretty similar to the night before. Dinner. Pain crisis. Turns out, the protein formula they were giving me had an artificial sweetener in it even though I'd told them multiple times I was allergic. Breathing treatment. Cardiac events. Funny enough, it doesn't get less scary (though not having another code happening at the same time does help). I started having adrenaline dumps because of the held meds. I didn't sleep at all that night. Not a single minute.

On the fifth day, the internal medicine doctor came in, took a look at my leg, and told me there was probably ligament damage. It would never be spoken of again. He also told me I'd be taken down for surgery at 9:30. I called my people to tell them to hurry up and get there, because we'd thought it was going to be 1:30. I started having... bathroom issues. The kind that are really inconvenient when you're NPO and also hooked up to six pieces of equipment that you have to disconnect from before getting up and you have a damaged leg. My people arrived. 9:30 came and went. 1:30 ultimately came and went. They came for me at 2:30. I was exhausted and terrified and furious. The surgeon said it wouldn't hurt much, it was "just a little skin incision." I was skeptical. They wheeled me in, and the nurse pressed the oxygen mask over my face like she was trying to strangle me with it. She also started pressing down on my throat?? My last thoughts before going unconscious were that she was going to accidentally damage my trachea with the force she was using.

I woke up screaming, crying, and 90% unable to see. They pushed the heaviest-duty pain medication they had, and it did absolutely nothing. (Thanks EDS). They immediately wanted to move me, because I was the last procedure of the day and the nurses wanted to go home. They picked me up and I almost went unconscious.

Back in the room, I got two more different kinds of medication, and in combination the three took the pain from a 10 to an 8. That was enough for me to be able to realize I couldn't see. "It could be a side effect of the sedation, or it could be a stroke." They had to take me to CT to clear me of a stroke. The pain of that was indescribable. It wasn't a stroke.

I once again didn't sleep. The pain was too severe.

On the sixth day, they wanted to take me off of pain medication. My people advocated for me, and managed to get me one more day. I couldn't even make it to the bathroom. I could barely speak. I still couldn't see. They made the call to transfer me out of the step-down unit and back to the regular ward, except they chose to do it by wheelchair instead of on a cot. Since they'd started running feeds, this was a two-person job. The person responsible for my IV/feed pole kept getting out in front of the wheelchair and literally dragging me by the tube. She nearly ripped the tube out of my body four separate times. I was barely conscious by the time I got to my new room.

On the seventh day, they did take me off all pain medication, less than 48 hours post-op. I still couldn't stand up straight or move without assistance. The pain was made immeasurably worse by the mishandling the night before. They didn't care. They also weren't anywhere near discharging, not for any medical reason, but because the logistics of arranging the supplies were apparently beyond figuring out.

On the eighth day, I was supposed to go home, but they told me it would be "several more days" while they waited for the supply delivery. Given that I was and am able to eat and drink by mouth, I told them I was going to wait that several days at home, where I can sleep and feel safe and not be traumatized. They said it would be AMA, but nothing else. I said fine, and signed.

It was only once I got out that I saw in the discharge papers that I needed to flush my tube every 4-6 hours to avoid clogging-- which they didn't give me the supplies to do. The syringes they had, that wasn't part of the supplies they had to order. That was a choice. So I had to get that urgently elsewhere.

Then I learned that they canceled the supply order. They said they weren't going to, but they did. If they'd said they were going to do that if I left, I obviously would have stayed. But they lied, or they changed their minds, or whoever spoke didn't know the policy.

So now I have a tube, no orders, and I have to wait until I see my motility specialist outpatient to even start the process of getting the necessary supplies.

Oh, and loads of excess trauma. I certainly have that.

And is some of this on me? Yeah, absolutely. I own that. But I was exhausted and no longer felt safe there, and I was told everything would get done. I acted on the information I had. I don't know.

So, yeah. Here I am. Where do I go from here? No earthly clue. What a mess.

I was diagnosed with hyperPOTS in 2023.

I just got out of the hospital where I spent a week related to complications of gastroparesis.

I still had "normal" POTS symptoms, but I'd gone so long without an adrenaline dump that I genuinely was starting to think that the hyperandrenergic part of my disorder was gone.

In the hospital, they didn't really understand why I was being prescribed guanfacine. They thought it was for my blood pressure. I kept trying to explain that it wasn't, it was for my hyperPOTS, but they wouldn't listen, and because my blood pressure wasn't high-- it wasn't low either, just normal, while also on metoprolol-- they held my guanfacine.

I spent the entire time I was there having 4 or more adrenaline dumps per day. I've been out for several days and back on my meds and I'm still having them.

Point well taken: meds work, and that doesn't mean the underlying condition is gone. Just in case anyone else out there was having a similar thought process, I thought I'd share. Also, if anyone else has had a similar experience and could share how long this lasted, I'd love to hear from you!

Hey all, me again 🫠

I recently came out of surgery and had a pretty rough go. Long story short they were very rough with the gas mask and the last thing I felt before being put under was the sensation of being held down and strangled (I wasn't struggling, and I have no idea why it went this way). It's left me with some trauma around the feeling of anything around my face/neck (they were also pushing down on my throat, for some reason??).

I'm 100% still committed to masking. I'm just having a very visceral panic reaction to my aura right now. Has anyone had this and come through it? Any recommendations, beyond time and probably therapy?

Thanks as always ♡

Edit: Thank you all so much! 😭 I'm really exhausted physically and cognitively (I have ME/CFS) and don't have the capacity to reply person by person right now-- I hope to soon--but for now please know I'm so so grateful for everyone's suggestions and empathy. You all are such wonderful humans and this community is truly one of the best around. 💜

Hey all,

Unfortunately I've been hospitalized and need surgery to address emergency complications of a chronic condition. I'm going to be here for at least a few days, maybe up to a week, and I have a roommate.

I'm high risk, in respiratory failure and have cardiac conditions. I'm masking as close to 24/7 as possible, but I do have to eat, drink, and do hygiene, and I also have to have the surgery.

Any tips for how best to mitigate the risk, and any good vibes very much appreciated. TIA!

Title, mostly

I'm currently moderate. Hospitalized for urgent G/J feeding tube placement for malnutrition from gastroparesis, complicated by recent infections.

My doctor insisted I go directly, which meant getting admitted through the ER, so I've already had a day of overexertion, overstimulation, and overexposure to infection (I've been masking, but...)

And now I'm here for (at least) a few days, surgery to follow, and maybe up to a week. I have a roommate, no control over the environment, and no real ability to rest. Any advice on how to reduce the impact of this?

Not asking for medical advice! I'm literally in the care of doctors!

I'm more looking for things like "I'm so glad I had this wedge pillow waiting for me at home" or "recovery took [longer/less long] than I expected and here's why." Just, like, what to expect, and what if anything I can maybe order to make my life a little easier after the fact.

I do also have EDS, to the extent that that complicates things.

Thank you! ♡

(Also, I'm terrified, so, yeah, encouraging words very welcome!)

CW: mention of unintentional weight loss due to chronic GI illness and low body weight without numbers/specifics and concern about cumulative effects; if that could be at all triggering, please protect your peace and don't read ♡

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It was a rough day after a rough month after a rough year after a rough few years.

I already had plenty wrong: hEDS, POTS, cardiac ischemia, SVT, VT, ME/CFS, MCAS, chronic migraines, chronic pelvic pain (symptomatic ovarian cysts + suspected endo) etc. I was already reliant on mobility aids and practically homebound. I was already incredibly cautious to avoid infection, because the last infection I had put me in heart failure.

I've been struggling for over a year with gastroparesis. I've been living in a body that no longer feels like mine. I was already small. This is... hard to even see in the mirror, and unquestionably medically dangerous.

My original gastroenterologist threw in the towel, called it refractory and referred me to a motility specialist after I failed the third medication in a row. The first appointment was months away. I've been waiting since January. That appointment is finally around the corner.

One of the "fun" side effects of gastroparesis for me is that sometimes I go to swallow and just... don't. A month ago, that happened while (ironically) I was taking my anti-nausea medication and I fully aspirated the pill. That led to pneumonia.

My oxygen saturation started dropping with any exertion at all. I couldn't get to the bathroom without gasping for breath. Dizziness, chest pain, shortness of breath, etc.

Three weeks later, I was starting to recover a tiny bit when my roommate came home with "just a little sore throat" that he didn't bother to mention until he'd spread it around the house. Four days later I tested positive for Flu A and B at the same time.

I got so unbelievably sick. I lost what little progress I'd made and then some. My oxygen levels started dropping further. I couldn't eat much at all for most of a week. I was genuinely terrified at multiple points that my body couldn't withstand it. Thankfully it could, and did.

I got an urgent appointment with a pulmonologist.That was today. She was very nice, and very thorough, which was lovely. I'm not complaining. But my vitals were so bad by the time I got into her office that she nearly called an ambulance on the spot. I can't afford that, financially or otherwise. My appointment with motility is on Monday. The next available is in October.

I barely--barely-- left there without ending up at the hospital. But now I have five more tests to have done, I'm on 24/7 oxygen for the forseeable future, I still might have to go to the hospital and miss that appointment, and I did have to cancel the surgery I had scheduled for the end of the month that would have helped the chronic pelvic pain that I've been suffering from continuously since *last July* and it's really hard in this moment to see this for what it probably is-- just another rough patch that will end.

I have to believe things are going to turn for the better. They probably are. It just doesn't feel like that right now.

tl;dr: this sucks. kind or hopeful words appreciated. Advice about how to go out in public while deeply uncomfortable with the idea also appreciated: between my body size, the mobility aids, mask, and oxygen concentrator, I'm just dreading dealing with the judgment that I know is coming, but I have no choice because I have to have all these tests.

Technically this also belonged under [Flu, RSV, etc] but with only one tag, Vent felt more appropriate.

I'm high risk. Multiply chronically ill, most seriously with heart conditions that tend to tilt into heart failure with any/every infection my body contracts. Everyone in my household knows this and has seen the consequences firsthand. Hospitalizations. Loss of function to the point of ending up near-bedbound and reliant on mobility aids to get around. Medical bills in the thousands of dollars (and up!). New diagnoses compiling on the old ones from complications of infections and treatments. There's no secret or mystery here here.

It's been collectively agreed: we all mask outside the house, and we all report symptoms right away, isolate, and mask in the house from that point until symptoms subside.This has gone fine for most of us, except for one person who just does not seem to get it. He says he does! He says he will! And then, somehow, it's only after he's visibly ill and has been spreading germs for days and someone else mentions it that he'll seem to realize it's happening. And there's always a different excuse. This time it was "I thought it was just a sore throat!"

His "sore throat" turned out to be Flu A *and* B. He was fine. Literally only had a sore throat and a light cough. I'm on the verge of going to the hospital, barely able to breathe, feeling like my heart is going to explode, and already knowing-- absolutely knowing-- that I'm about to lose the desperately needed surgery I had scheduled for the end of the month, because there's no world in which I'll get cardiac clearance after this.

I'd just gotten over aspiration pneumonia a month ago. My body literally cannot take this. And no, I can't move out, and The Vector isn't going anywhere either. It's complicated, but suffice to say he's a relative of the homeowner and my fully disabled self is not in a position to argue. All I can do is hope to get through this and try to impress upon him--*again*-- that his actions have consequences, and ask him, *again* to do better.

I'm so angry, and this is the only place I could post where I knew people would understand. Thanks for listening. Hope y'all are having a better night than me ♡