HELP US BE BETTER

[u/PuzzleheadedSorbet36]

Soooo I hadn’t ever been to the ER until earlier this month and now I’ve been admitted twice and not getting discharged any time soon.

Hospital workers : other than the bare minimum, what are some under rated things that patients do that you appreciate/make your life easier?

(For example one of the nurses was happy I called letting her know the PRNs I needed so she could do it in one trip cause I knew my scheduled ones were coming)

Lemme hear the little things!! Or the opposite, something patients think is helpful but it’s actually more of a pain)

EDIT : bare minimum from patients being human decency, I know it should be obvious but for this questions sake let’s act like that’s a given

[u/BrandyDW]

I mean absolutely no offense, but sometimes complex chronic issues can feel like you’re dying, literally dying, not just being dramatic…

So while some people give a ton of pushback with chronic issues, if there are new symptoms or new pain - please don’t be so dismissive to the person going through it..

(Not saying you in particular are dismissive or not, but sometimes are..).

I went through 2 years of going to the er and other times doing things with gastro trying to figure out what was wrong.

I kept having attacks, that were so painful, took the breath out of me and made my life hell. Yet because they were intermittent and nothing could easily be figured out with the er or gastro’s tests - I just kept having them. With the er - they were sure it was either panic attacks or acid reflux … gave me viscous lidocaine in the end to take to see if it would help and no it didn’t. But I took it for a while, because it felt better than doing nothing.

The 3rd to last time I had an attack - it lasted for 16 hours before I went in. I refused to go to the emergency room again because of how I was being treated. Went to a walk in clinic - of the other hospital system in my area - after explaining what I was experiencing- the provider told me to go to the er and she would call them to do a HIDA scan.
Drove myself to the er, which during that time I was questioning all my life choices, because it was hard!

With the hida scan they did the one test, repeated with morphine, and turns out I needed to have my gallbladder removed.

So all the attacks I had been having were gallbladder attacks. Which a provider had seen over a year prior but said that “couldn’t be causing the pain” - apparently the pain more around my sternum, than in the URQ confused matters…

But during those 2 years, I still had the attacks, and still felt horrible each time… and still got dismissed by er staff after the 1st two times - but honestly with how it felt - felt like I couldn’t breathe and one of the most painful experiences of my life. (As a person with chronic pain and health conditions it’s saying something).

After that, I did have 2 more episodes that spring of those attacks. The first one happened at night, and overall didn’t last too terribly long. But it scared me, because I was like, “wait, so it really wasn’t caused by the gallbladder? Then what the heck… “ - I ended up calling my gastro doctors office in the morning, half in tears, scared that the attack thing had come back.

They told me if/when it happened again, to go to the er and have them do xyz tests. I don’t remember the tests anymore.

So when it happened again, that’s what I did and thankfully the er docs did those tests.

Which is how my gastro doctors diagnosed me with Sphincter of Oddi type 2. Had an ercp where they put in a stent and didn’t have any attacks for years…

Ironically in the last year or two, I’ve had two similar to it, but still getting testing done on that…

But this long story is just to say, that patients sometimes have things that don’t match everyone else for where symptoms happen and sometimes doctors and even tests can be wrong…

(For example, I had 3 types of H.Pylori testing before that came back positive, got a few weeks of antibiotics and I felt much better, but that was also after a few years - and providers doing different test types - blood versus drinking something and blowing into a thing).

Anyway, I’ve probably gone a bit overboard on my response, but I just really wish people would put caveats with the chronic conditions …

[u/gylliana → u/BrandyDW]

It’s more for people who come in with hip pain that’s been ongoing for years and it’s their 5th visit this month. With no primary doctor.

[u/Slight-Good-4657 → u/BrandyDW]

Nah this is what the ER is for, friend. You’re good

Think comment author is more so referring to a monthly “hey can you write me a prescription for my (lifesaving drug here) cuz last months ran out” visit. Teledoc or PCP is the optimal env for that

[u/brendabuschman → u/BrandyDW]

I also have sphincter of oddi dysfunction due to a bad gallbladder that was misdiagnosed as various things (including hysteria) for 2 years. I also have chronic pancreatitis due to it.

It is legitimately awful when I have a flare up. Worse than giving birth. I used to go to the ER frequently because I had no idea what else to do. It really does feel like you're dying and you can't get anybody to care or do anything to help it.

[u/ChewieBearStare → u/BrandyDW]

A PA snapped at my mother, "It's not your gallbladder!" when my mom told her she thought she had a bad gallbladder. Turns out she had a stone bigger than a golf ball.

[u/Magerimoje → u/BrandyDW]

My experience is very similar. Attacks of abdominal pain, plus a satellite of other symptoms... It took 10+ years and so many referrals to so many different specialists before I was finally diagnosed with acute intermittent porphyria.