a POTS information sheet to give to medical staff

[katsusu]

After writing my last 2 entries and reading about the pre-surgery entry- is there a way we could put together an easy to understand basic booklet or page-that we can give to the medical staff when we go to the doctors.

I have already copied and carry with the symptoms and what is POTS pages from this site -but i think we could put together one faster for them to read.

At the same time maybe make adaily chart that we could track our symptoms every day, anybody creative enough?

Kathleen

[briarrose]

The wide variety of patient symptoms might make that very difficult. I think that everyone's list is so individual that they are best off just making a current medication list, symptom list, maybe current doctor's and carrying their current medical records including any tests that they might have had. Also, if you make a list of questions to the doc that will help you when your having cognitive difficulties.

I personally have a binder with all of my medical records. I keep a typed list of my medications in my purse in case I ever end up in the ER. When I have an exacerbation of POTS, I'm diligent about keeping a journal of my symptoms. I think that if everyone did that then your pretty well set.

[katsusu]

you sound remarkably organize. your right- we may just need to folllow your example.

but i was also thinking about something a little more brief to hand out to doctors and nurses- where you could maybe check off the symptoms that effect you.

but other wise i am going to try to follow your example.

kathleen

[briarrose]

Thx Kathleen

I did come across a check list once but it was for one of Vanderbilts studies and was 5 or 6 pages long.

[Guest tearose]

I stopped dragging my medical records with me. I try to send any records ahead of time. I do keep a fairly up to date "medical resume" as I call it that I present to any new doctor I have. I also hand them a sheet with reference information in case they want to learn more. (NDRF has a booklet too I have used but that is long and costly)

I guess the key for me was is to find a way to streamline what I needed to give the doctor so I didn't overwhelm them. Or me! I can always give or send more information if they need it.

I would love a little pamphlet from DINET that summarized dysautonomia though.

Put me on the DINET information development committee Kathleen!

take care, tearose

[geneva]

KAthleen, I think it is a good idea to have the basics about dysautomomia. Each person can add their own med information to include with a pamphlet that everyone can use. I think the icing on the cake would be for it to look "official" -- would a POTS doctor write something. I worry sometimes that printing pages from here --which I do -- may not go over so well with all doctors because they are not from a medical est. organization. MAybe just the references like michelle uses are enough. Let the doctors then research.

Good idea! hope you are feelling better Kathleen.

[Nicole's Mom]

I have often tried to come up with a way to verbalize or a sheet of paper explains the basics of dysautonomia. For instance we are working with a couple of psych counselors ( another story) and it is so hard to explain the ins and outs of dysautonomia. I feel like it would be helpful to have some talking points which some days they are there and some days they elude me. I have alway found it difficult to explain the picture.

And I know that each picture of everyone is individualized and maybe I'm just overwhelmed and get inarticulate and also feel like I need about 1/2 hour of the other person's time to explain and that they have to be good listeners and interested- it could be anybody that I want to explain what's going on. Then maybe in our world the scope of the problems are larger than the Nicole's illness per se ( another day, another post ) and maybe I don't know what the cut off point is.

Anyway . . thanks. . . .just rambling now . . .

Bev

[katsusu]

I am thinking about something very basic but official looking like the - breast canceer pamplets, or high blood pressure ones. Something that we can have on hand that has some basic information plus web sites to look for furture information.

I guess, what i am looking for -is something to make us look like we are an official illness because the way people react to me when I try to explain it or give them print outs - sometimes it seems like they think i am making it up.

Besides - it would be a way we could start making people aware-that we are here and unforunately not going away.

Most of the information couldbe found in this web site- especially the symptoms. anyway- just an idea.

kathleen

[briarrose]

There is such a document. In fact when I was diagnosed officially my cardiologist gave me a copy. It was from the NDRF. I read the front cover and almost cried because it was completely me and what I've been going through for several years.

Now that I'm thinking about it, it would be nice to have access so we could buy our own pamphlets. Maybe we could contact the NDRF and see if we could buy some pamphlets in bulk to pass out.

It would also be nice to do another fund raiser with a T-shirt next time around. I get a lot of compliments on my Chronic Illness shirt when I wear it. I wear it to work and people will come up to me and tell me to hold still so they can finish reading. On the back of the T-shirt is the 33 ways to encourage a Chronically ill friend.

[ginger]

Hi all--

I've used the NDRF brochures with all of my docs, friends, family... keep a few in the car and at home when needed. Maybe they aren't super duper professional-looking and maybe a little longer than what you're looking for, but they are a great start. I remember one the nurses looking at me when she saw the front cover and said, "Do you really have all of these?" referring to the long list of symptoms. When I said yes, most of them, she was floored!

I also bought a copy of NDRF book for my docs, one for my house, one for my parents and in-laws. The book part wasn't cheap, but NDRF threw in some extra brochures and photocopied articles for purchasing that many books. AND, all of my docs have been soooo grateful.

Here's an idea for you all: I printed out my own business-sized cards (the new kind with smooth edges and gloss finish are nice looking and sturdy) with the following information:

"Medical Information" across top in bold, caps, red

Name and emergency contact info including spouse #

Dx: list them (I wrote out POTS and then acronym after)

Rx: list them and dosage

"Updated" date in small italic

The print has to be pretty small, but still easy to read. And the card size is perfect to tuck into the wallet.

And then I distribute: planner, wallet, car, work office, home bulletin board, spouse, etc. I hand them to the docs when they ask for updates on current Rx. And they serve as emergency info if I can't respond.

Ok, that's my 2 cents. Pretty good for a lazy Sunday evening.

Ginger

[katsusu]

The card idea reminds me how unprepared I am-if anything happens to me. Especially since I live in another country - and that i have Parkinson Disease and take alot of medications that cannot be stopped - as well as I have 2 stimulators in my brain. Boy, I have to get myact together.

the Phamplets that were mentioned sound perfect. Maybe it just needs some to updated. The question is who do we go to- to look at it or get them copied.

kathleen

[MightyMouse]

Ginger, the NDRF book is available as a FREE pdf download from their website.

http://www.ndrf.org/NDRFHandbook.htm

Also, you can download all their newletters for free.

http://www.ndrf.org/ndrf_newsletters.htm

And, they have a few articles available to you as free downloads:

http://www.ndrf.org/Reference.htm

As for who to contact for NDRF's medical info sheet, you should contact them directly.

National Dysautonomia Research Foundation

1407 W Fourth Street, Suite 160, Red Wing, MN 55066-2108

Phone: (651) 267-0525 Fax: (651) 267-0524

Nina

[Michelle Sawicki]

We'll be working on putting together some informational brochures this year. The next newsletter will outline one we are working on.

Michelle

[Merrill]

I've been wanting to post these two URLs for a while ... this string is as good a place as any, I suppose, tho you may see them reappear in a future post. I like these easy-to-read/understand explanations; maybe you'll like them too?

http://heartdisease.about.com/cs/arrhythmias/a/IST.htm

http://heartdisease.about.com/cs/womensiss...ysautonomia.htm

Also, I'm going to repost the URL to the vanderbilt doc; it's several pages long, but one of the pages has a symptoms list. You'll probably have a few symptoms to add (I did), but it's pretty thorough.

http://www.mc.vanderbilt.edu/gcrc/adc/adsquestionnaire.PDF