#aorticdissection — Public Fediverse posts

Op-Ed: STAT Action Saved My Life, It Could Save Yours

By The Marfan Foundation At 38, I nearly lost everything in an instant. Marfan Foundation Board member and…
#NewsBeep #News #US #USA #UnitedStates #UnitedStatesOfAmerica #Genetics #AorticDissection #board #Marfan #Science #STAT+
https://www.newsbeep.com/us/157242/

Op-Ed: STAT Action Saved My Life, It Could Save Yours

By The Marfan Foundation At 38, I nearly lost everything in an instant. Marfan Foundation Board member and…
#NewsBeep #News #US #USA #UnitedStates #UnitedStatesOfAmerica #Genetics #AorticDissection #board #Marfan #Science #STAT+
https://www.newsbeep.com/us/157242/

The Canadian healthcare system seems to be getting heavily criticized today in the wake of news that a young man died of an aortic dissection after leaving a Montreal ER.

As someone with multiple conditions that increase my risk of these dissections - I have some thoughts and concerns around expectation setting for ER visits.

First - if you’re young and otherwise healthy and haven’t had many dealings with the ER system - the experience may come as a shock to you.

There’s a reason those of us with chronic illness say we won’t go unless literally dying.

Our system is on its knees. Too many patients are without a family doctor, wait times for specialists and punishingly long and many cities have shockingly few options for urgent care.

Some family doctors even prohibit using urgent care - leaving the ER as the ONLY option

As a result - ERs become a catch all for everything. They’re treating minor ailments that should be handled by GP. They’re treating chronic illness because patients can’t get in with specialists. They’re seeing a surge in respiratory viruses. Plus all the actual emergencies

This leads to punishingly long wait times. I don’t think I’ve ever been in & out of an ER in under 8 hours - and it’s often far longer than that.

A lot of that time is spent being bounced from one waiting area to another - and it’s easy to conclude this means you’re “fine”

Unfortunately that’s not necessarily the case. What it usually means is the staff need the bed you were in to assess another patient.

They’ve deemed you “relatively stable for the time being” and moved you to a waiting area.

Read that again. Stable for the time being.

I find people are quick to assume staff don’t care, aren’t concerned and/or believe their issue is minor - when in reality they’re incredibly busy and it’s going to take a long time to get to you if your vitals are stable.

That’s the goal of triage - treat the unstable first

As I said at the beginning of this thread - I have a number of conditions that make me high risk for a dissection.

I also have POTS which means I frequently present with chest pain, tachycardia and sweating.

Ruling out a dissection has never been a quick process

It always starts the same way. Standard vital check. Blood pressure, temperature, pulse and O2 plus EKG.

I assume this is what was done in Adam’s case. If his vitals were stable (which they could easily be in early stages of dissection) he would be triaged low priority

I wish it wasn’t like this. I wish patients could get the tests they need quicker. But the reality is that there are too many people and too few doctors so long waits become unavoidable.

I also understand the desire to leave. I hate being in the ER

🧵 1/2

https://nationalpost.com/news/canada/montreal-man-dies-er-hospital-wait

#healthcare #canada #aorticdissection #ER #chronicillness #disability #disabilityrights #keepmasksinhealthcare

Today is the four year anniversary of when I had an aortic dissection #aorticdissection

Roles of pyroptosis and immune infiltration in aortic dissection. https://doi.org/10.3389/fmolb.2024.1277818 #AorticDissection #Bioinformatics #Pyroptosis #ImmuneInfiltration #Database

Another successful checkup in the books! Each year I have a follow up with my doctor after I get an MRI to check on the diameter of my aorta and such. I’ve been doing this regularly since my #aorticdissection back in October 2020. Everything is stable! Also this year I didn’t partially fall asleep in the MRI machine, ha

Tonight I get my yearly-ish MRI of my chest and Aorta before my follow up with my doctor. It usually takes an hour and they inject me with contrast. It used to trigger some mild PTSD, but now it’s not so bad — and sometimes I almost fall asleep, ha. #aorticdissection

Aortic Dissection misdiagnosis #aorticdissection #chestpain 1-5%#survival rate #drugoverdose NO #mushroompizza NO #takeabloodyscan 5 #miniStroke #KidneyFailure #liverfailure #sureitsnotadrugoverdose #yesimfuckingsure https://pubmed.ncbi.nlm.nih.gov/34968970/

Please check out myaorticjourney.org - my story plus a growing list of resources for aortic disease education, awareness, management, research, and support. #aortaed #aorticdissection #tad #htad #marfan #loeysdietz #veds #bav #cardiogen #cardiology

Anyway, today is extra emotional, clearly. We didn’t know we’d get to have this day. He’s one of the best, most compassionate, most brilliant people I know (he was a literal rocket scientist, you guys), and I’m just so happy he’s still here. Thanks for reading all of that ❤️ #MedMastodon #DisabilityAdvocacy #DisabilityMastodon #RareDisease #AorticDissection :Aorta: