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Need Input: Cfs & Dysautonomia Awareness Project


Eillyre
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Hi all!

I'm hard at work on a CFS & dysautonomia awareness project for my dad. He works at a university health service that is dedicated to providing students with high-quality healthcare; it really is a class act. There's always room for improvement, though :P , so he plans to host a series of talks about the afore-mentioned conditions to educate his medical staff in things like:

1) recognizing these conditions in patients earlier

2) treating them appropriately

3) trying to help them make lifestyle adjustments so they can hopefully stay in school

4) advising patients as to their options in seeking out specialists or further testing

5) and generally being supportive of the patients' physical, emotional, mental, and social needs as they deal with the illness.

At the moment, the project is directed primarily toward CFS but includes info, considerations, etc. for patients (such as myself) who also have overlapping POTS, OI, etc. -- a more POTS/dysautonomia specific series may well follow later; we're trying not to bite off more than we can chew. :P Dad's handling the more scientific and "researchy" end of things, but really wanted an "insider's view" to take a central role, hence my involvement.

This is where you all come in! One of the sections that my dad is very interested in is finding out what we are looking for in our doctors, nurses, and other assorted medical professionals. I've already written down many of my opinions, but he'd really love to have your imput as well ("check with your forum pals -- see what they think, too!" :D ). So, here's your chance to invest in better care for the new generation of PWCs, POTSies, and others!

I welcome any PMs or posts (is that OK Nina & Michelle? :) ) regarding any of the following questions:

1) What are some aspects of your doctors and the care they have provided you with that you liked/appreciated?

2) What are some aspects of your doctors and the care they have provided you with that you did not like/appreciate?

3) What improvements would you suggest or value (even in the good circumstances)?

4) What are things that you look for or would like to see in a your primary medical facility? This can be things like having wheel chair service, bench to lie down on so you don't have the floor, place to sit while you wait in line, etc.

5) For those in a college/university setting, what accomodations have been/ would be helpful to you?

6) For those who had to leave a college/university setting, what were the greatest challenges to your staying in school? Was there anything the school could have done to help you be able to finish your education there?

Thank you all! Back to my typing! :)

Angela

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i really can't think very well right now but i just wanted to say that i like the idea you and your dad have! i think it is awesome of everyone who tries to spread the word! thank you!

dionna :)

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1) What are some aspects of your doctors and the care they have provided you with that you liked/appreciated?

I liked the fact that my first cardio didn't know much about POTS, actually admitted that to me and referred me to an EP/Cardio who knows ALOT about it. My PCP helps to treat each actual symptom I have, besides the obvious palps, and low bp, he gives me meds to help out with my horrible stomach problems, which began with the POTS...he basically listens to what I have to say and treats me the best he can. He also follows up with my specialists and KNOWS what is going on.

2) What are some aspects of your doctors and the care they have provided you with that you did not like/appreciate?

My first PCP said I had anxiety probs, the guy didn't even run an EKG on me, which ended up showing one of my problems (reentry tachy) in addition to POTS.

3) What improvements would you suggest or value (even in the good circumstances)?

Getting POTS, etc. more known!! As well as the various treatments (which meds to try) out there. I can't tell you how many docs I have seen in the ER, etc who didn't even know what Midodrine was! Also, have it be known that it has alot of the same symptoms as anxiety, BUT is not anxiety.

4) What are things that you look for or would like to see in a your primary medical facility? This can be things like having wheel chair service, bench to lie down on so you don't have the floor, place to sit while you wait in line, etc.

Comfy chairs, even some that recline a bit would help. Im not saying all out recliner, but just a little something to help us out.

5) For those in a college/university setting, what accomodations have been/ would be helpful to you?

Had to leave.

6) For those who had to leave a college/university setting, what were the greatest challenges to your staying in school? Was there anything the school could have done to help you be able to finish your education there?

I think I would do better doing some online courses. I am not always able to get to school in the AM, which tends to be my worst time. So being able to have courses in the afternoon would help alot. I know alot of schools let you pick your schedule, but usually the afternoon ones (all the good times) fill up very quickly...It'd be nice if there were some spots left open for us! :) Also, have some benches, etc. around campus for us to take a quick breather! I wouldn't be able to live at a college, etc at this point in time.

Thanks for taking the time to help your dad as well as getting the word out! :)

Jacquie

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Thanks Dionna & Jacquie!

I probably should have mentioned the timeline for this -- thanks for reminding me, Dionna!

I don't necessarily need information immediately, although the sooner I recieve it, the better. Dad hasn't asked for particular timeslots for the the talks yet, so they won't start for at least two months -- maybe not even until the summer or next fall, depending on the health service's schedule (which is already very full!).

We want it to be good and the information presented in a very compelling & interesting manner, so Dad's not jumping into presentation mode it until we're satisfied with the quality.

Thanks again in advance to you all!

Angela

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Hey Angela-

When I have more time, I'll answer your questions. What a great project. In the meantime, I'd love for my son to attend your Dad's University :-) He'd be at the only school in the US that "got" his condition! He'll be ready in 4 more years. Out of curiousity, where is it? Which University?

Thanks-

Julie

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Looking forward to it, Julie. :)

He works at Princeton. They actually have had 2 students with POTS -- that I know of, at least.

Best of luck to your son as he prepares for school! Mack, I assume? ^_^ I'm still hoping (& working toward) being able to try a degree program somewhere in the future.

Angela

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Hi Angela -

It's wonderful to hear about efforts being made to educate the medical field about something that many of them know very little about (and I know there are millions of diseases out there as such, seems the MRSA infections that our familes are dealing with are also confusing to doctors as they all have their own way of trying to treat it but since this affects our family personally, I can relate to it's importance). As for the survey, here's my personal input:

1) What are some aspects of your doctors and the care they have provided you with that you liked/appreciated? I have yet to run into any doctor who really understands POTS, but ones that are willing to listen to my needs and understands how sensative my system is to drugs would help. Too often they think I'm dreaming up my side effects to a new drug and tell me that at how low of a level my dosage is, there's no way I could be even having side effects! And even advise me to up my dosage at that point. So I guess if they were more understanding to how POTS affects the entire body would be appreciated. Also, this is probably more personality based than something that can be taught, but being caring and willing to work with a patient for the long hall would be important to.

2) What are some aspects of your doctors and the care they have provided you with that you did not like/appreciate? Being told it's just anxiety and that I need to just learn to control it and use relaxation techniques and I'd be fine. When they keep trying the same drug over and over and over after I've told them each time that it's not working or my system isn't tolerating it! When they take my blood pressure with an automatic bp monitor and it doesn't register, they keep trying over and over until my arm is ready to pop, even though I tell them that because of my irregular heart rhythm and bp instability, they need to use a manual cuff and when they get a strange reading to realize it's not wrong!

3) What improvements would you suggest or value (even in the good circumstances)? More awareness that this isn't anxiety and realizing that when we say we aren't feeling well, it's not the same as many patients who come in with periodic problems, ie., colds, flu, rashes,etc. This is a daily, chronic illness that is like having a severe flu that flares up throughout each and every day!

4) What are things that you look for or would like to see in a your primary medical facility? This can be things like having wheel chair service, bench to lie down on so you don't have the floor, place to sit while you wait in line, etc.

Reclining chairs of some sort would be extremely helpful and also not having to wait so long to be seen as sitting too long without being able to lay down is extremely difficult and have almost left to go home as how ill I was feeling while waiting to be seen for an appointment. (Even if they would immediately take us back so we could lay on the examine table while we waited would work better.... maybe?)

Good luck with this survey, great idea ^_^

Tammy

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Princeton! My goodness, I have supreme faith in my son's abilities, but that might be a s-t-r-e-t-c-h. Darn it! Well, his last report card was pretty good, but I'm guessing he'd better get cracking to get in there. Best of luck with your degree, Angela. I know how hard attending school can be with dysautonomia. I KNOW you will finish.

Big Hugs-

Julie

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Yes, I'm fine with it--as long as folks know that the answers will be shared with others but without your personal identifying info like the person's forum name, real name, email address, etc. unless they've given you specific permission to do so.

I hope your dad's project helps someone in the future go through fewer steps to get the correct diagnosis and treatments, and also means that someone might be treated better overall. Thanks for taking the time to do the project. ^_^ Nina

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I'll try to think of answers to all the questions over the next couple of days, but the first thing that comes to mind as far as going to college is concerned:

W/ on line classes and such possible less stringent deadlines. I know of a university in VA where the distance learning program gives you all the material for that semester up front and then you have 12 weeks to complete it on your own terms.

It makes you have to be very responsible, yet very good for when you aren't feelin well!!

Peace,

Madeline

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