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Pots Info Card


momdi
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Mike's visits to the ER last month for dehydration and low potassium were a nightmare. Here in Phoenix, with the rapidly growing population, the ER capacity just can't keep up.

The first time, his roommate took him to his doc's office, where the PA ordered an ambulance. All the hospitals were on *divert* status with long waits, so there were no good choices. When he got to the ER, he was put into a wheelchair(!) and told it would be 6 hours before he even could see a doc. And they refused to give him liquids since he was nauseated.

Despite the eventual IV and potassium treatment, he was back in the same potshole of dehydration and low potassium the next day. His doctor could not order him to be directly admitted, because the hospital was still full and ambulances were on divert status again. So, one more time in the ER, waiting (again) 6 hours to even see a doc. The triage people were really nasty about insisting that he had to walk into the triage office and SIT UP in a chair to be evaluated. He was finally admitted for a week of treatment, but that's another story.

So...

Mike's PCP wants us to write a letter of complaint to the hospital administrator and the ER director. Hard to evaluate if this would be worth the time and the emotional effort.

The PCP also suggests that we write out some kind of a brief descriptive card about POTS that Mike can hand to the ER people. I looked at the card that comes with the DINET bracelet and don't think that quite does the job.

My question...

Is there an information card of this kind already out there? Has anyone else had any success with these ideas? If so, please please share.

Many thanks for any and all help...

Dianne

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The pamphlets are helpful. Have you ordered any of those?

My husband made a record of all my stuff, including meds and diagnoses and shrunk it down on the computer. Then laminated it and it fits in his wallet.

What I've discovered here is that if you walk in the door with a bucket they will get you back faster. They don't leave vomiting people or people who feel like it in the waiting rooms.

I don't know if it's that way there, but no one likes the idea of cleaning up a mess whether the person is going to do it or not. I know that is really sneaky, but it's torture waiting to get help. morgan

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The Mayoclinic actually gave me a card when I was there to give to an ER that stated to "See this patient immediately" - I only used it once when I was in really bad shape and the person at the desk asked me if I made it myself! :) It had info about me and all Mayo contact info.

It wouldn't hurt though to keep something on hand explaining POTS considering everytime I've told the ER doc that I have POTS they drug test me first before anything. I think part of it has to do with my age (23) and the name POTS. I've started referring to it as dysautonomia after I had 3 seperate ER experiences that required them to drug test me.

At the very least keep a med list on you.

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when i go to the hospital they dont know what POTS is after explaining it to registation and about an hour of searching their books i finally just started telling them Soldiers Heart they dont know what that is either but at least it is in their book of codes but a card would be cool i have a medic alert braclet and i got it on there i had to call medic alert to get it put on it wasnt on the list on the computer thank goodness i havent had any emergancy but i dont know if it works but they will get the name of it if they call and when i leave the house someone with me know what it is but with this medical problem we should all get some kind of card saying admit us quick since it has to do with our heart and we could have further problems if treatment is delayed

and if nothing else evey doc should be educated in it it is bad when the patient is telling the doctor what they have and how not to treat it

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For me the words

IRREGULAR HEARTRATE

seem to get me seen faster. Keep in mind the normal wait for an ER visit is 2-3 hours to be seen as long as there aren't overloads or anything like that. My dad was an EMT, my aunt was a Cardiac Tech, and many friends are as well. They all say the normal wait is 2-3 hours, mostly closer to 3.

Taking the bucket for vomiting will help too.

But you alsmost NEVER get seen the second you walk in unless you're bleeding badly.

Also I have 3 pages I carry with me at all times and a photocopy of them too to hand to the triage people for them to keep if they don't want to make their own copy.

The first page is "Medications" and then all of them listed, name, dosage, mg, and how many times a day.

The second page is "Conditions" and then all of them listed.

The third page is "Allergies" and then all of them listed, medications first, then latex and adhesives, then food, and then things like wool and seasonal allergies, insect stings, poison ivy.

You can also add a fourth page "Doctors" and then list all of the doctors he sees regulary or specialists who follow him, their phone number and office info, and their on-call number if they have one, and who to call first if the docs there are having a problem.

I've noticed that for some reason they pay more attention to it on Notebook/Computer sized paper in Large Writing than on a small wallet card. I've tried both and they always pay attention to the Large papers, and most of the time just browse or ignore the wallet card.

Also I try to joke with them or if I can't I get my husband to. I wait till they're reading the 2nd page, Conditions, and then I almost always say: and if you've hard of/or know all of those you'll be the first person. And say it jokingly.

That ususally gets them because even if they THINK they know what NCS and POTS are even though they don't really, most have never heard of EDS -- Ehlers-Danlos Syndrome. I've had to explain that one every time.

I try to joke and be lighthearted through out the whole triage part, it really seems to get them on your side or at least more willing to listen and help you. And the same thing with the nurses and docs once you get back there. The calmer and more relaxed you are the nicer and easier to deal with and more willing to listen and give you what you want they are.

Hope this helps.

UnicornIsis

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Thanks to each and everyone of you for your great suggestions. I'm a former ER nurse myself and understand well the priorities of an ER. My biggest goal is just to be sure he gets to lie down and NOT to have a repeat experience where he's expected to sit upright in a chair, which was absolute torture for him.

And taking away water from someone who's dehydrated for 6 hours, even if they're nauseated, imo is a *duh* medical moment. So he vomits, so what - give him an emesis basin or a bucket. (sorry for the vent).

One kind nurse continued to bring him ice chips while he waited in the hallway, but begged him to tell noone.

Alexia, Mike has been to Mayo too. How did you manage to get the card to give to the ER? This sounds like the best.

BTW, it's amazing to me that 3 people on this little bitty post are 23 years old.

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Guest dionna

had to much to drink? lets give you a drug test. are you pregnant? no? well lets test you anyway. eating disorders? are you sure you don't have an eating disorder?

i am petite (95 lbs; 5' 1") but i love to eat. they could even look at shape of my body and see that the eating disorder thing aint right. that one obviously upset me the most. okay i am done venting.

usually what i do if i actually want to see the ER docs, i just pass out again and make a big scene. they get me back there quiclky. i know most of you don't want to just pass out again or get hurt or anything but if i am feeling bad enough to ACTUALLY GO i am willing to get another bruise or two. besides i don't feel the pain when i am passed out and my body stays numb for a little bit. so yeah sadly i use fainting as my pain releiving drug.

another thing that helps me out is that i've been to the ER so many times that eveybody knows me and they know what i need. sad isn't it.

writing a complaint might be stressful but it might also relieve stress. sometimes when i get mad at someone i will write a letter venting about it but never really give it to the person. so maybe just getting it out will help relieve some frustation. who knows? and maybe they will take you more seriously next time as well cause they know it takes a good bit to go through the work of it. well whatever decision you make i know it will be the best suited for you. hope things get better for you and Mike.

dionna

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Add Prego test. I get drug tested and pregnancy tested everytime. Its funny they never tell you- I always find it on my medical records later. That just cracked me up. Yeah, POTS is an unfortunate name. Plus, I was on Marinol for awhile so that just added to it. The best story happened last Christmas though.

My friend's husband is a Radiologist. She told him that I have POTS. He thought it was POTTS, which is TB in the spine. Also, their little son has had immune system problems. When I visited her last Christmas, he came out and yelled from the deck "She has POTS...Don't let her in the house!"

It still cracks us up.

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One other thing that nobody else has seemed to mention but helps me.

I DO NOT SAY POTS OR NCS. I say the whole name out long. They're not going to know what either one is most times, so saying or writing out (as I do) the WHOLE NAME makes them pay more attention. I have never been drug tested for any of/any times I've been in.

I HAVE been pregnancy tested every time. I asked them one time why I was being pregnancy tested since I was on my period and that was the reason I was in, I was too dehydrated from loosing so much blood. They said its routine to test EVERY woman that comes in over the age of 10/11 or 13 depending on the ER for pregnancy. The reason it is, that you could be and not know it or you could be and know it, but don't want to tell whoever brought you in so you won't tell the ER staff. And they reason they need to know is so they don't give you any medications that could harm the fetus.

I just figure hey, its a double-check that I'm right and since my family and my hsuband's family (all the MANY extended parts too) keep asking us if I'm pregnant yet, I tell them "well the last time I went to the ER was ______ and it was negative then" and for some reason they believe the ER test over me just saying it! :)

Anyway, just wanted to add those bits. Hope this helps.

UnicornIsis

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Thanks unicornisis. Brilliant idea.

When I worked in the ER, we also routinely tested a lot (not all) females. BTW, You would be surprised (I was) how many who *couldn't possibly be pregnant* were. And someone who thinks they have their period is sometimes miscarrying.

IMO, drug testing doesn't make any sense.

Mike's PCP thinks his info card should start out with *rare autonomic neurologic disorder*. The *rare* part seems over the top to me, but maybe the rest is a good idea. It's probably best to avoid the acronym POTS, although all the ER docs in Phoenix claimed to be familiar with POTS. Maybe they thought it was TB - LOL.

Of course, the issue was to get somewhere to lie down and something to drink to make the 6 hour wait tolerable, and that means somehow educating the triage staff. Like many with POTS, Mike doesn't actually pass out, though he probably wishes he could sometimes.

In my experience, ERs don't take dehydration and electrolytes seriously enough. I had a friend who was admitted to the ER where I used to work (not on my shift) with dehydration and electrolyte imbalance following the flu. They never really questioned why the labs should be so far off on an otherwise healthy 37 year old woman. Anyway, she had undiagnosed Addison's disease and had a cardiac arrest and died during the night. A dose of steroids would have saved her life.

One more question - has anyone had any luck with establishing some type of protocol with your local ER? That there is some type of written instruction from the ER director to guide your care?

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