I wonder if a pamphlet describing these issues and made widely available to others in your condition to give to doctors and health care workers upon arrival in a hospital would give you an advantage when dealing with recalcitrant and small-minded people.
There are actually some resources like that - especially for MCAS (another chronic condition I have). There’s ER guides and treatment plans that patients can print out and bring with them.
It’s about 50/50 with respect to if they help. If the doctor is willing to read them they make a huge difference - but some doctors get their back up over the insinuation that they “need” a resource. Sigh.
I'm so sorry you experienced this Kelly, it's heart rending as a medical patient to watch as your attending physician dismisses your needs, autonomy + agency all at once because of a discrimination bias. You deserve so much better. I literally had to diagnose myself with MCAS, EDS + POTS & the longest hardest part was finding a doctor that believed me & knew enough to prove it competently.
In 2018 I underwent severe trauma that flared up my undiagnosed MCAS really bad + I was skeletal, could hardly stand without fainting, my partner was so worried that we drove the hour to go to the hospital in Santa Fe. (You don't go to the hospital in my town unless you want to die. I mean, never.) Their take? Anxiety 😩 and my fault too right, like I just hadnt been managing my life well enough. They literally make us do their job for them and then we have to take their abuse for insurance purposes.
I’m so sorry to hear that! Mcas can be such a beast … I became skeletal once during a flare and then my legs swelled up really badly out of nowhere. The ER said “maybe they’re just getting fat.”
Turns out I have a protein losing enteropathy and dangerously low albumin from the lack of nutrition from the constant MCAS.
I hate that there’s so little recourse for us when we’re treated this way - it’s one of the reasons I started writing these stories down. I want to try and give a little power back to the patients and raise awareness that these are not one-offs.
I also forgot to mention the wildfire in 2022 that the federal government started that burned 350,000 acres and destroyed our water sanctity+ ability to treat water + a whole host of issues related to the smoke?? Almost burned down our town! So scary. So I'm hoping I might get a settlement for that experience and be able to afford a chemical free space to sleep in and make healing progress and grow my own herbs + actually heal. 🫶🏻
I'm in a rough spot now, where I'm living isn't entirely safe, but I'm trying to do what I can to claw back some capacity. I have a super sweet supportive boyfriend but his family is literally from hell, and his sister in law beat me up at my home basically as a hate crime spring 2023.
I moved away for a while, but I was even sicker there so I had to come back - my boyfriend is my caretaker too. His parents are Trumpers and live on the same property ten feet away and have not accommodated a single request for a gate, or just some space from someone who so blatantly wishes me harm.
I have come a long way since then and have a lot of tools I can work with, though it feels like I got setback, but I am hoping that I just need a little time and that I can find my stride amongst the uncertainty of the whole thing. Your stories written with so much love and YOU have been such a balm to my soul, I appreciate your hard work so much, and never once will I expect it from you. 🫶🏻
This is so kind Geneva - thank you. Its wonderful to know my words bring comfort to others (though I’m so sorry you’re struggling to find a safe living environment)
That’s an extra hard challenge - especially with mcas. I’m dealing with horrible chemicals and VOCs from my neighbours and my body is dreadfully unhappy … but it’s difficult to mitigate for everything!
I'm so sorry you're dealing with VOC's, me too, they're IMPOSSIBLE to get away from ugh. And the stupid dryer sheets extra toxic laundry fumes people just vent out of their houses? Your poor body deserves better neighbors! I'm lucky enough to only have on proximal neighbor, but they are SO chemically, and SO ableist, and my in laws.
Our culture is literally so toxic and ableist that is has come to this. If I do get a settlement i'm going to create a MCAS safe "Neva habitat" we have been calling it, and I also want to make it so that people like you with MCAS and sensitivities can come stay too.
I appreciate you immensely, I always wanted to write like you're writing but have been through so many disasters recently I can barely write anything or even put a sentence together lol. There's also SO MUCH I want to write. Is there anything more I can do to support you and your IMMENSELY important & equally courageous work? I think you are the best!! It literally feels like you're writing about me every time, I think I made like 5 jokes about that on BlueSky
I live in an apartment so it’s inescapable. We’re crammed in so tightly … I can smell scented products through the outlets and my hvac. Then I open the window to try and get fresh air but all the dryer vents nearby make the impossible.
I swear it’s gotten worse since Covid … it’s like no one can smell properly anymore so they’re using stronger and stronger scents.
And thank you for the lovely compliment! I really appreciate it. It means so much to me to know my words are resonating with people and capturing how they feel as well. 💜
Ugh I'm so sorry Kelly, that sounds so brutal, I hate this! 😭 You deserve safety, and you deserve to feel good in your body at least every so often! And air filters are so expensive 😞 I feel the scents are really metaphorical for all the toxic biases our culture internalizes, like about disabled people, queer people, BIPOC + literally anyone who is slightly different. We all deserve to be free!
If I had a dollar for every time a doctor told me it would be extremely rare if something was the issue and that ended up being the issue I’d be rich. Everything that has happened to my daughter has been rare. They know now to think Zebra when she shows up. She’s been in the ICU the last two NYEs having emergency surgery
I’m so sorry! Two New Years ICU stays sounds awful. Is she there now? Is she an EDS patient by any chance?
I was in my mid thirties before I was properly diagnosed after years of being told it was nothing and/or no chance it’s something rare. Most of the dismissive doctors didn’t even run tests. Just “you’re fine”.
I’m so grateful I finally saw a doctor who could tell I wasn’t “fine” and cared enough to figure it out.
I’ve got EDS and OI too… though I think my diagnosis on OI might be revised if I ever get a follow up. My Bp these days is never over 70/40 regardless of position. It’ll drop into the 50s systolic at night. To me that feels like more than pots/OI but I’ve been fighting for follow ups and tests for well over a year. It’s so frustrating.
Yes we’re in Canada. There is an EDS clinic here in Toronto where we were diagnosed. She also has POTS and MCAS. Lots of fluids and midodrine to keep her bp high enough so she’s not fainting as she walks.
I’m in Toronto too! Small world. Really happy she’s got better treatment and that the midodrine is working (I failed it the first time but may need to try it again?
It really is. And it happens way too often. Many of us have to use the ER more than a non disabled person and as such end up with many horror stories. I badly want to see the system change and patients treated as partners in 2025.
It’s the same reason I am looking for an autistic therapist. and my PCP shares my major diagnoses. I’m just tired of being my own doctor. Neurotypical doctors are useless to me unless I have a very clear request of them.
Whe. I told my small-town PCP about my hEDS and MCAS diagnoses said, “you have to be your own doctor.” That was so much better than defensive gaslighting! Nowadays I go to doctors for advice and resources. If they don’t deliver at least one of those two, I move on.
Yes! I once had an ER doctor who said “you’re the expert in this and your body so you steer the ship”. I wanted to hug him. He asked how much IV fluids and how fast to run them…. He really treated me like an expert in my body.
I am dealing with undiagnosed POTS...for years now. Most 'providers' do not know what it is...and seem to not care.
I was referred to a cardiologist for issues with my heart last summer (too much thyroid med)...and while the cardiologist did know what POTS was, he claimed it would be useless to diagnose me since my BP was all over the place, and the 2 meds used to help would exacerbate that.
He then told me I should just never go anywhere where I couldn't lay down.
Thanks ever so much doc....and yes, he mentioned 'anxiety'.
Ugh I’m so sorry!! That’s wild advice - just don’t go anywhere you can’t lie down. So basically stay in bed the rest of my life? That’s your sound medical opinion?
It never fails to astound me how they can on one hand acknowledge an issue with your BP and that you may always need to lay down … and on the other say it’s “anxiety”.
You may want to try it (or suggest your doctor try it if you’re comfortable?) you basically lay down for 5-10 min to get your resting heart rate and then stand for 10 min without leaning on anything or shifting your weight from side to side.
Monitor heart rate and if there’s a 30+ beat per min increase - that’s strongly indicative of POTS!
I can't help wondering if they would have treated you any better on a different day than NYE. Not convinced, but what unfortunate timing. (Which couldn't be helped.) EIther way, they should allow for zebras.
Super unfortunate timing. It’s why I tried so hard not to go in. I’ve had some pretty awful experiences on regular days too (but I’ve also had some fab ER doctors and nurses)
Do you mean what happens if the test is positive? There are treatments for pots which can help… plus having an official diagnosis can sometimes make it easier to navigate ERs and other specialists.
That repeat accusation of you having been drinking is INFURIATING. The subsequent lack of apology, even more so. Those ER docs are likely trained never to admit fault, because: lawsuits. But testing your blood alcohol without your knowledge and in spite of what you told him was just diabolical.
The lack of apology and sudden insinuation that I was “fine” was what left a sour taste in my mouth. I can get past the incorrect assumption I’m drunk… but it was the complete lack of remorse or interest in figuring out why I was stumbling, slurry, dizzy, dehydrated etc that made me fume.
I guess I should be grateful he didn’t say it was because I was a ginger! 🤦♀️
On the other hand: a nondisabled cishet white male friend of mine went to the ER with a panic attack that drove his BP into the 200/130 range for hours. (I can elaborate on why I'm 100% positive it was a panic attack, but it's not relevant here.) Nobody ever told him it was a panic attack. He still thinks it was a cardiac event.
That’s fascinating! I know there are a lot of differences between the genders but do you think the ER didn’t realize it was a panic attack or just didn’t want to tell him?
I'm pretty sure they knew and just didn't want to tell him, or they would've given him something to bring his BP down rather than just waiting for him to calm down. (TBH I'm still kind of freaked out that they let his BP stay so high for so long - they didn't know whether he had any stroke risks, they didn't scan him for aneurysms, etc)
As someone that works in the healthcare industry (although, I no longer work in a hospital) my heart goes out to you. You are right, an ER is set up for acute issues and they try to get people in and on their way ASAP. However, you needed a cardiac workup, instead of just rehydrating and sending you on your merry way. This is another area where the medical "care" system is broken in the US. The health insurance is another area that is so far broken it has descended into HELL. But you are right sometimes the ER docs need to stop chasing non-existent horses, especially when it is a zebra they are looking at.
Thank you Nancy. They did put me on telemetry while doing the IV so that they could be sure it was sinus tach and not something else - but I agree I needed a work up or at least a referral to a cardiologist.
I really think he was so sure I was drunk that he was almost angry to be proven wrong. Its deeply disappointing when this happens because it does make it harder for patients to seek care the next time (it certainly did for me)
Happy 2025 BBto. Hope you had a better new year's this time around. Here I thought zebras only existed in Africa, I'll be sure to keep my eyes and mind open. Best wishes.
My husband knows the only way I'm going to the ER is if I'm unconscious and going by ambulance. I have only had one positive ER experience in 20 years of chronic illness.
Yep - people in my life know the same thing. Back when this happened I didn’t know I had POTS so I went because I didn’t know what else to do… at least now I know how to manage flares at home.
We really need to treat chronic illness patients better in the ER - so many won’t go in when they really need to… which can have devastating consequences
I'm so tired of being a zebra (not with POTS...I have a transplanted kidney and Stage 4 lung cancer without an identifiable source). And because of the cancer, I can't just go to any ER.
But NH now has standalone ERs (not attached to a hospital) that provide private rooms with bathrooms and excellent service. And they can deal with chronically ill patients. They are a bit pricy, though, but totally worth it. I don't know if other states have anything similar.
And I'm sorry you had to go through that experience. I'm also tired of dealing with doctors in hospitals who aren't part of my care team because I can't replace them. I'm not sure I could have stayed as calm as you did.
I’m glad you have that option! I’m in Canada so we don’t have anything like that unfortunately - though I’m lucky that I now live close to an excellent ER where most of the doctors I’ve seen have been familiar with my rare condition.
It’s still a risk because it’s so crowded (it’s a major trauma centre) but they do take me seriously and let me contribute to the care plan. That alone is a huge win!
How does it work if the ER isn’t affiliated with a hospital and you need to be admitted? Do you have to start all over somewhere else?
My primary hospital is Mass General Brigham in Boston, MA, and while the ER that I went to is associated with a hospital in NH, if I had needed to be admitted, they would have taken me to MGB. (I could have gone to MGB's ER, but it's similar to the one you go to, plus a 45-minute drive.)
And they sent my oncology team (which is who told me to get to an ER) all my records because they're not part of the MGB group. (Any hospitals that are part of the group use the same patient network service, so that they all have access to all patient info.)
And any time medical folks listen to us is a huge win :-)
I wonder if a pamphlet describing these issues and made widely available to others in your condition to give to doctors and health care workers upon arrival in a hospital would give you an advantage when dealing with recalcitrant and small-minded people.
There are actually some resources like that - especially for MCAS (another chronic condition I have). There’s ER guides and treatment plans that patients can print out and bring with them.
It’s about 50/50 with respect to if they help. If the doctor is willing to read them they make a huge difference - but some doctors get their back up over the insinuation that they “need” a resource. Sigh.
I'm so sorry you experienced this Kelly, it's heart rending as a medical patient to watch as your attending physician dismisses your needs, autonomy + agency all at once because of a discrimination bias. You deserve so much better. I literally had to diagnose myself with MCAS, EDS + POTS & the longest hardest part was finding a doctor that believed me & knew enough to prove it competently.
In 2018 I underwent severe trauma that flared up my undiagnosed MCAS really bad + I was skeletal, could hardly stand without fainting, my partner was so worried that we drove the hour to go to the hospital in Santa Fe. (You don't go to the hospital in my town unless you want to die. I mean, never.) Their take? Anxiety 😩 and my fault too right, like I just hadnt been managing my life well enough. They literally make us do their job for them and then we have to take their abuse for insurance purposes.
I’m so sorry to hear that! Mcas can be such a beast … I became skeletal once during a flare and then my legs swelled up really badly out of nowhere. The ER said “maybe they’re just getting fat.”
Turns out I have a protein losing enteropathy and dangerously low albumin from the lack of nutrition from the constant MCAS.
I hate that there’s so little recourse for us when we’re treated this way - it’s one of the reasons I started writing these stories down. I want to try and give a little power back to the patients and raise awareness that these are not one-offs.
Are you doing better now?
I also forgot to mention the wildfire in 2022 that the federal government started that burned 350,000 acres and destroyed our water sanctity+ ability to treat water + a whole host of issues related to the smoke?? Almost burned down our town! So scary. So I'm hoping I might get a settlement for that experience and be able to afford a chemical free space to sleep in and make healing progress and grow my own herbs + actually heal. 🫶🏻
I'm in a rough spot now, where I'm living isn't entirely safe, but I'm trying to do what I can to claw back some capacity. I have a super sweet supportive boyfriend but his family is literally from hell, and his sister in law beat me up at my home basically as a hate crime spring 2023.
I moved away for a while, but I was even sicker there so I had to come back - my boyfriend is my caretaker too. His parents are Trumpers and live on the same property ten feet away and have not accommodated a single request for a gate, or just some space from someone who so blatantly wishes me harm.
I have come a long way since then and have a lot of tools I can work with, though it feels like I got setback, but I am hoping that I just need a little time and that I can find my stride amongst the uncertainty of the whole thing. Your stories written with so much love and YOU have been such a balm to my soul, I appreciate your hard work so much, and never once will I expect it from you. 🫶🏻
This is so kind Geneva - thank you. Its wonderful to know my words bring comfort to others (though I’m so sorry you’re struggling to find a safe living environment)
That’s an extra hard challenge - especially with mcas. I’m dealing with horrible chemicals and VOCs from my neighbours and my body is dreadfully unhappy … but it’s difficult to mitigate for everything!
I'm so sorry you're dealing with VOC's, me too, they're IMPOSSIBLE to get away from ugh. And the stupid dryer sheets extra toxic laundry fumes people just vent out of their houses? Your poor body deserves better neighbors! I'm lucky enough to only have on proximal neighbor, but they are SO chemically, and SO ableist, and my in laws.
Our culture is literally so toxic and ableist that is has come to this. If I do get a settlement i'm going to create a MCAS safe "Neva habitat" we have been calling it, and I also want to make it so that people like you with MCAS and sensitivities can come stay too.
I appreciate you immensely, I always wanted to write like you're writing but have been through so many disasters recently I can barely write anything or even put a sentence together lol. There's also SO MUCH I want to write. Is there anything more I can do to support you and your IMMENSELY important & equally courageous work? I think you are the best!! It literally feels like you're writing about me every time, I think I made like 5 jokes about that on BlueSky
I live in an apartment so it’s inescapable. We’re crammed in so tightly … I can smell scented products through the outlets and my hvac. Then I open the window to try and get fresh air but all the dryer vents nearby make the impossible.
I swear it’s gotten worse since Covid … it’s like no one can smell properly anymore so they’re using stronger and stronger scents.
And thank you for the lovely compliment! I really appreciate it. It means so much to me to know my words are resonating with people and capturing how they feel as well. 💜
Ugh I'm so sorry Kelly, that sounds so brutal, I hate this! 😭 You deserve safety, and you deserve to feel good in your body at least every so often! And air filters are so expensive 😞 I feel the scents are really metaphorical for all the toxic biases our culture internalizes, like about disabled people, queer people, BIPOC + literally anyone who is slightly different. We all deserve to be free!
If I had a dollar for every time a doctor told me it would be extremely rare if something was the issue and that ended up being the issue I’d be rich. Everything that has happened to my daughter has been rare. They know now to think Zebra when she shows up. She’s been in the ICU the last two NYEs having emergency surgery
I’m so sorry! Two New Years ICU stays sounds awful. Is she there now? Is she an EDS patient by any chance?
I was in my mid thirties before I was properly diagnosed after years of being told it was nothing and/or no chance it’s something rare. Most of the dismissive doctors didn’t even run tests. Just “you’re fine”.
I’m so grateful I finally saw a doctor who could tell I wasn’t “fine” and cared enough to figure it out.
Sick kids was the absolute worse. All in her head they said. Had to age out of there before she found anyone interested in figuring it out
Oh are you in Canada?
I’ve got EDS and OI too… though I think my diagnosis on OI might be revised if I ever get a follow up. My Bp these days is never over 70/40 regardless of position. It’ll drop into the 50s systolic at night. To me that feels like more than pots/OI but I’ve been fighting for follow ups and tests for well over a year. It’s so frustrating.
I’m so glad she’s got a great doctor now!
Yes we’re in Canada. There is an EDS clinic here in Toronto where we were diagnosed. She also has POTS and MCAS. Lots of fluids and midodrine to keep her bp high enough so she’s not fainting as she walks.
I’m in Toronto too! Small world. Really happy she’s got better treatment and that the midodrine is working (I failed it the first time but may need to try it again?
She also has a central line and gets tons of fluid
She was home this year but only because we have the best ID doctor who does everything to keep her at home. Yes she has EDS. EDS/OI overlap syndrome
Just completely unacceptable
It really is. And it happens way too often. Many of us have to use the ER more than a non disabled person and as such end up with many horror stories. I badly want to see the system change and patients treated as partners in 2025.
It’s the same reason I am looking for an autistic therapist. and my PCP shares my major diagnoses. I’m just tired of being my own doctor. Neurotypical doctors are useless to me unless I have a very clear request of them.
I hope you can find one! It’s exhausting being our own doctor, therapist, investigator etc.
Finding a good healthcare worker who will really listen and try and help is rare - but so great when you find them!
Whe. I told my small-town PCP about my hEDS and MCAS diagnoses said, “you have to be your own doctor.” That was so much better than defensive gaslighting! Nowadays I go to doctors for advice and resources. If they don’t deliver at least one of those two, I move on.
Yes! I once had an ER doctor who said “you’re the expert in this and your body so you steer the ship”. I wanted to hug him. He asked how much IV fluids and how fast to run them…. He really treated me like an expert in my body.
I am dealing with undiagnosed POTS...for years now. Most 'providers' do not know what it is...and seem to not care.
I was referred to a cardiologist for issues with my heart last summer (too much thyroid med)...and while the cardiologist did know what POTS was, he claimed it would be useless to diagnose me since my BP was all over the place, and the 2 meds used to help would exacerbate that.
He then told me I should just never go anywhere where I couldn't lay down.
Thanks ever so much doc....and yes, he mentioned 'anxiety'.
I hate it here.
Ugh I’m so sorry!! That’s wild advice - just don’t go anywhere you can’t lie down. So basically stay in bed the rest of my life? That’s your sound medical opinion?
It never fails to astound me how they can on one hand acknowledge an issue with your BP and that you may always need to lay down … and on the other say it’s “anxiety”.
Have you tried a 10 min stand test?
No...
You may want to try it (or suggest your doctor try it if you’re comfortable?) you basically lay down for 5-10 min to get your resting heart rate and then stand for 10 min without leaning on anything or shifting your weight from side to side.
Monitor heart rate and if there’s a 30+ beat per min increase - that’s strongly indicative of POTS!
I can't help wondering if they would have treated you any better on a different day than NYE. Not convinced, but what unfortunate timing. (Which couldn't be helped.) EIther way, they should allow for zebras.
Super unfortunate timing. It’s why I tried so hard not to go in. I’ve had some pretty awful experiences on regular days too (but I’ve also had some fab ER doctors and nurses)
thx
and then? (that's the issue, really)
Do you mean what happens if the test is positive? There are treatments for pots which can help… plus having an official diagnosis can sometimes make it easier to navigate ERs and other specialists.
That repeat accusation of you having been drinking is INFURIATING. The subsequent lack of apology, even more so. Those ER docs are likely trained never to admit fault, because: lawsuits. But testing your blood alcohol without your knowledge and in spite of what you told him was just diabolical.
Your horse/zebra metaphor is spot on here.
The lack of apology and sudden insinuation that I was “fine” was what left a sour taste in my mouth. I can get past the incorrect assumption I’m drunk… but it was the complete lack of remorse or interest in figuring out why I was stumbling, slurry, dizzy, dehydrated etc that made me fume.
I guess I should be grateful he didn’t say it was because I was a ginger! 🤦♀️
On the other hand: a nondisabled cishet white male friend of mine went to the ER with a panic attack that drove his BP into the 200/130 range for hours. (I can elaborate on why I'm 100% positive it was a panic attack, but it's not relevant here.) Nobody ever told him it was a panic attack. He still thinks it was a cardiac event.
That’s fascinating! I know there are a lot of differences between the genders but do you think the ER didn’t realize it was a panic attack or just didn’t want to tell him?
I'm pretty sure they knew and just didn't want to tell him, or they would've given him something to bring his BP down rather than just waiting for him to calm down. (TBH I'm still kind of freaked out that they let his BP stay so high for so long - they didn't know whether he had any stroke risks, they didn't scan him for aneurysms, etc)
As someone that works in the healthcare industry (although, I no longer work in a hospital) my heart goes out to you. You are right, an ER is set up for acute issues and they try to get people in and on their way ASAP. However, you needed a cardiac workup, instead of just rehydrating and sending you on your merry way. This is another area where the medical "care" system is broken in the US. The health insurance is another area that is so far broken it has descended into HELL. But you are right sometimes the ER docs need to stop chasing non-existent horses, especially when it is a zebra they are looking at.
Thank you Nancy. They did put me on telemetry while doing the IV so that they could be sure it was sinus tach and not something else - but I agree I needed a work up or at least a referral to a cardiologist.
I really think he was so sure I was drunk that he was almost angry to be proven wrong. Its deeply disappointing when this happens because it does make it harder for patients to seek care the next time (it certainly did for me)
Happy 2025 BBto. Hope you had a better new year's this time around. Here I thought zebras only existed in Africa, I'll be sure to keep my eyes and mind open. Best wishes.
You never know where you might spot a zebra!
My husband knows the only way I'm going to the ER is if I'm unconscious and going by ambulance. I have only had one positive ER experience in 20 years of chronic illness.
Yep - people in my life know the same thing. Back when this happened I didn’t know I had POTS so I went because I didn’t know what else to do… at least now I know how to manage flares at home.
We really need to treat chronic illness patients better in the ER - so many won’t go in when they really need to… which can have devastating consequences
I'm so tired of being a zebra (not with POTS...I have a transplanted kidney and Stage 4 lung cancer without an identifiable source). And because of the cancer, I can't just go to any ER.
But NH now has standalone ERs (not attached to a hospital) that provide private rooms with bathrooms and excellent service. And they can deal with chronically ill patients. They are a bit pricy, though, but totally worth it. I don't know if other states have anything similar.
And I'm sorry you had to go through that experience. I'm also tired of dealing with doctors in hospitals who aren't part of my care team because I can't replace them. I'm not sure I could have stayed as calm as you did.
I’m glad you have that option! I’m in Canada so we don’t have anything like that unfortunately - though I’m lucky that I now live close to an excellent ER where most of the doctors I’ve seen have been familiar with my rare condition.
It’s still a risk because it’s so crowded (it’s a major trauma centre) but they do take me seriously and let me contribute to the care plan. That alone is a huge win!
How does it work if the ER isn’t affiliated with a hospital and you need to be admitted? Do you have to start all over somewhere else?
My primary hospital is Mass General Brigham in Boston, MA, and while the ER that I went to is associated with a hospital in NH, if I had needed to be admitted, they would have taken me to MGB. (I could have gone to MGB's ER, but it's similar to the one you go to, plus a 45-minute drive.)
And they sent my oncology team (which is who told me to get to an ER) all my records because they're not part of the MGB group. (Any hospitals that are part of the group use the same patient network service, so that they all have access to all patient info.)
And any time medical folks listen to us is a huge win :-)
sometimes it’s zebras.
Exactly. And when that happens those patients need proper care.
indeed.