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Faxes and emails


Mrs. Glass
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Well I faxed all of the paperwork to Vanderbilt Monday,so now I am playing the waiting game. I also kept searching the web and found Doctors emails and emailed them pleading for help. One was delivered back to me because the email address was no good any more. But I am going to keep trying. I am so tired of not knowing exactly what is wrong with me. One time my Doctor tells me one thing and another time he tells me something else. So I am so confused I feel like pulling my hair out. I am not a patient person any more so this is going to be torture. If there were things that I could do to keep my mind off of things it would be different, but all I do all day long is to stare at the cieling or to watch tv and I am sick of tv. So I just will wait on a response from one of the doctors. I dont know where the money is going to come from to get there, but I guess it will just have to fall out of the trees. My husband told me not to worry about it that he would figure out something. Well it is hard for me to type this morning my eyes arent doing so good and my hands dont want to cooperate, and for some reason I am having trouble spelling. I guess my b/p is low. I havent checked it as of yet. So I guess I will go for now. Vanessa

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Wow, Vanessa,

You are really taking charge and that is exactly what you have to do when you have an illness that is not well understood by most doctors.

After giving everyone you contactacted a reasonable amount of time to get back to you, will you be following up each one with a phone call or email or fax or something until you get a definitive answer? My experience has been that follow-up is as important as initial contact.

In the meantime, waiting is like being in suspended animation. Since you have to live in the meantime, I hope you find something useful to fill the time.

The journey is underway!

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That waiting ia a bite. You'd think we were all specialist in it by now! It is hard, but I agree, you need to find something else to think about or do until things start happening. this is a bad time of year with all the holiday hrs. Hopefully someone is in the offices. :-)

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Oh yes I will be following up with faxes, emails, phone calls, whatever it takes for them to take me seriously and finally see me. I have to do something all of this sitting around is going to drive me crazy. I have decided to make my son a scrap afghan. If I knit it I can do it even with bad eyesight, but if I decide to crochet it I will be limited, because I have to see my work to get it right. I have all kinds of scrap yarn that a friend gave me and my son is the only one that I havent made one for in a long time. My family uses them so often that after a while they have to be replaced. So at least I will have something to keep my mind off of everything. Vanessa

Wow, Vanessa,

You are really taking charge and that is exactly what you have to do when you have an illness that is not well understood by most doctors.

After giving everyone you contactacted a reasonable amount of time to get back to you, will you be following up each one with a phone call or email or fax or something until you get a definitive answer? My experience has been that follow-up is as important as initial contact.

In the meantime, waiting is like being in suspended animation. Since you have to live in the meantime, I hope you find something useful to fill the time.

The journey is underway!

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The good news is that it should not take you very long to hear from Vanderbilt. I believe Sunfish said she heard from them after a month and went the following month. I sent my application in around the beginning of November and heard from them last week. I am scheduled to go at the end of February. This was a lot quicker that some places that had a wait list of over a year. Good luck.

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Guest Finrussak

I hope you do hear soon; keeping in mind that many offices are running on slow if not closed until second week in January!!

Also, if the major centers are silent (or give a "no") try to re-email and reg mail to individual doctors...been there as they say...often the unit nurse or secy will scan a letter/records and "decide" that you dont fit some criteria or study theyre looking to fill...and send a dismissal reply back.

In my personal case, Dr. Biaggioni didnt even know I sent Vandy anything...and when we called him/emailed etc...he finally spoke with my cardiol here after 4 tries and pleads!!!...Of course when I didnt fit their criteria for the current studies I was told I wasnt to go...and ended up at Dr Grubb...the best happenchance ever...and then Vandy did decide they needed me after all...by then tho I wasnt going to shlep there...had my dx and no longer cared to be their guinea pig.

This way, by contacting with the individual Drs, you may touch a compassionate nerve and they may be willing to put you on the list anyway!!...BUT make darn sure its not just for study purposes...that you will leave with a dx AND tx options!!!...believe it or not you can leave without having any more info than when started!!!!!

I even got a phone call from NIH several months ago asking me to go down to be examined/tested by an Israeli Dr due in...but they repeated like THREE times that I was NOT going to know why or get any answers re: my condition, nor would I even get any tx hints!!! I decided that I wasnt going to chance a further deterioration for that...even a 10 min trip to the local Drs sets off a POTSy episode...

Also, if you get that "no" ,persist in asking for them to at least speak with your local docs to give ideas/suggestions for dx tests and/or tx...they cant really offer definitve tx without having seen you but they CAN offer a long distance suggestion to another colleague...but due to the CMA atmosphere lately its hard to get them to comply!!

GOOD Luck for a speedy response!!! ( and dont worry about the money...itll come some how...my Grandmothers used to say that if its "bershert" [yiddish-meant o be] G-d will provide a clue and a way

Finette

Edited by Michelle Sawicki
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Thanks for all of the good advice. I have just been guessing at what to do. I did email one of the doctors at Vandy. I found her email address on another website. I havent heard back yet. But I guess I will just have to wait for a while. I just hope that the letter that I wrote to fax with the paperwork is not too long. It is three pages. but I wanted them to know exactly what I have been going through this past year. The past few months have been better compared to what it was like when this first started. But I still cant do anything with out having a horrible dizzy spell or the stupid wierd feelings that I get. Im not good at waiting anymore but I guess I dont have a choice. Thanks again. Vanessa

I hope you do hear soon; keeping in mind that many offices are running on slow if not closed until second week in January!!

Also, if the major centers are silent (or give a "no") try to re-email and reg mail to individual doctors...been there as they say...often the unit nurse or secy will scan a letter/records and "decide" that you dont fit some criteria or study theyre looking to fill...and send a dismissal reply back.

In my personal case, Dr. Biaggioni didnt even know I sent Vandy anything...and when we called him/emailed etc...he finally spoke with my cardiol here after 4 tries and pleads!!!...Of course when I didnt fit their criteria for the current studies I was told I wasnt to go...and ended up at Dr Grubb...the best happenchance ever...and then Vandy did decide they needed me after all...by then tho I wasnt going to shlep there...had my dx and no longer cared to be their guinea pig.

This way, by contacting with the individual Drs, you may touch a compassionate nerve and they may be willing to put you on the list anyway!!...BUT make darn sure its not just for study purposes...that you will leave with a dx AND tx options!!!...believe it or not you can leave without having any more info than when started!!!!!

I even got a phone call from NIH several months ago asking me to go down to be examined/tested by an Israeli Dr due in...but they repeated like THREE times that I was NOT going to know why or get any answers re: my condition, nor would I even get any tx hints!!! I decided that I wasnt going to chance a further deterioration for that...even a 10 min trip to the local Drs sets off a POTSy episode...

Also, if you get that "no" ,persist in asking for them to at least speak with your local docs to give ideas/suggestions for dx tests and/or tx...they cant really offer definitve tx without having seen you but they CAN offer a long distance suggestion to another colleague...but due to the CMA atmosphere lately its hard to get them to comply!!

GOOD Luck for a speedy response!!! ( and dont worry about the money...itll come some how...my Grandmothers used to say that if its "bershert" [yiddish-meant o be] G-d will provide a clue and a way

Finette

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