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  • Easy Question

    [Easy Question]

    Author: Mary Sharp (---.proxy.aol.com)

    Date: 08-18-02 02:56

    I am pretty sure I already know the answer to this one! But I think I need to ask it if I want some sort of sanity in my life right now! Can HCM still produce symptoms if there is no gradient? My second cardiologist said that if there is no obstruction then there cannot be any symptoms and says it must be something else. But everything I've read and heard from sources like my local cardiologist and even Lisa (with the most impecable timing in the world) say otherwise. I just hope this referral goes through. I need someone who knows what to do with this condition other wise I am going to go nuts with all of the unnecessary blood test ( I was checked for Lupus, rheumatoid arthritis, and now to see if I have abnormally high amounts of adrenaline in my blood stream ?!?!) Has anyone else been tested for these diseases due to their symptoms? I guess I am just looking for answers to ease my mind because School starts in two weeks (summer is tooooo short!).

    Well Thanks all!

    Mary S.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Easy Question]

    Author: Sarah B--Board Moderator (---.client.attbi.com)

    Date: 08-18-02 10:15

    Dear Mary

    I'd been told over and over "chest pains are inconsistent with your condition." Um, actually, no, since I have them all the time, that would be a fallacy.

    I have no obstruction, yet I'm in atrial fib all the time and would have lots of tachycardia if I weren't medicated. Yes, you need to see a real doctor right away.Your current cardiologist doesn't understand HCM at all.

    stick by your guns,

    Sarah

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    [Re: Easy Question]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 08-18-02 10:32

    MARY - and all the rest....

    OBSTRUCTION IS ONLY ONE PART OF HCM...and in fact only occures in between 20-30% of those with HCM. HCM symptoms are not often related to obstruction. Those with NO obstruction can infact have more severe symptoms then those with obstruction.

    In my opinion in MANY cases (and Mary I think this applies to you) the type of doctor you see matters a great deal, I am not refering to an HCM specialist or not it is more so if they are a general cardiologist, interventional cardiologist, echocardiographer. eletrophysiologist..... you get the picture.

    Those who are skilled in a piece of the condition have a mind set that tells them 'this is what can be done' example (and please do not read anything into my examples) if a doctor is interested in alcohol ablation and you are not a canditate for the procedure, then they may think there is nothing to be done and you are fine. An electrophysiolgist may say I see no rythm problems therefore you are fine. An Interventionalsist may see no role for any invasive procedures and think there is nothing to be done...get the picture...

    This is why I say ---as often as I do--- Get to a specialist! We are different, strange, weird, interesting (you name it I have heard them all from docs over the years --yes even the weird thing).

    So Mary YES YES YES those with no obstruction have symptoms and I am sure many of them will chime in here with comments.

    Best wishes,

    Lisa

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Easy Question]

    Author: Mary Sharp (---.proxy.aol.com)

    Date: 08-18-02 12:40

    Thanks Lisa it is so nice to hear that this isn't all in my head! My co-workers at Disney have given this condition a new term they say it is Reverse-Grinchitis! Instead of having a heart thats two sizes to small we have hearts that are bigger! Which means more to go around for caring which is what you guys do so well!

    Just our little chuckle of the day!

    Mary S.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Easy Question]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 08-18-02 14:52

    Thanks Mary...yes those with HCM have big hearts...in every way!

    Lisa

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Easy Question]

    Author: Matt (---.disney.com)

    Date: 08-18-02 20:51

    Mary,

    "It's a small world...". I also work at Disney! and about a month and a half ago, I went into cardiac arrest at work. My co-workers knew about my HCM and knew I had a big heart too. Well they did CPR on me (probably saved my life because I didn't have an ICD then - I do now). Then while I was out recovering, they worked to get a portable defibrillator in the office next door and they all took CPR courses again. What great people to work with. It's good to be back.

    And the main reason I have the ICD now and know what my future holds for me is finding Lisa and this group.

    Take care. Matt

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Easy Question]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 08-18-02 21:09

    Matt..stop it you'll make me cry happy tears.

    How are you feeling...anything new yet??

    Lisa

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Easy Question]

    Author: DENNIS J.BASSETT (---.ts17.qui.ma.net1plus.com)

    Date: 08-18-02 21:40

    Mary, I dont have a graident or obstructive HCM,but I used to before the heavy meds. and a pace maker and now an ICD.But I certainly have my share of sympytoms,shortness of breath, fatigue,and chest pain.I don,t beleive any one of us is the same or responds the same to all the meds. we have available to us. You just have to keep plowing through and hope your doctors find the correct combinationfor you. Good Luck Dennis

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Easy Question]

    Author: Mary Sharp (---.proxy.aol.com)

    Date: 08-19-02 00:29

    Hey Matt at what part of Disney do you work? I work in Innoventions East at Epcot. How nice it would be to talk to someone in person who has the same thing as me.

    Yes the gang here at Disney is great! Is there anyway you can get the information as to how your fellow cast members got the AED in your area! We don't have them yet in Epcot. At least the Reedy Creek gang is an awesome group unfortunately we are on a first name basis as many times as I have been hauled out by them. Well take care and I hope your ICD keeps you safe!

    Mary

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Easy Question]

    Author: Sarah B--Board Moderator (---.client.attbi.com)

    Date: 08-19-02 00:53

    Hey,

    Wouldn't it be cool to have the next annual meeting at Disney????

    S

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Easy Question]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 08-19-02 08:00

    Sarah...stop that...do you know how much work that would be to pull off...At least in NJ we keep our costs down because the staff of the HCMA does not need to travel.

    Lisa

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Easy Question]

    Author: Mary Sharp (---.proxy.aol.com)

    Date: 08-19-02 09:29

    I can almost assure you tickets into the theme parks wouldn't be a problem. You would be suprised what cast members can pull off! Especially if you do it at the off season there are times of the year that we get up to 60% off in the resort hotels! With the way attendance has been space isn't too much of a problem either. I bet you may even get more people to attend because you get two in one an awesome meeting and the perfect place for vacation! I don't know if you were planning another golf tournament but this a great place for that too!

    HHMMMM! Lets see a little pixie dust and some magic the folks at Disney has been known to work miracles! I think Sarah may have created a monster here!

    But Just a thought!

    Mary S.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Easy Question]

    Author: Sarah B--Board Moderator (---.client.attbi.com)

    Date: 08-19-02 11:47

    Dear Lisa

    I knew you would freak out when I wrote that, because I DO know how much work it is, but just think of how great it would be if you got Disney to back some/most/all of the expenses as a charitable contribution---since they have some HCM employees and have done right by them, they may be receptive to doing more than just giving us free tickets to the park. And you would get a bigger draw to the meeting, too.

    While this may be too much to plan for the very next meeting --I think it is something to think about for future ones. Please don't hurt me, Lisa (grin) I mean well.

    Sarah

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Easy Question]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 08-19-02 14:05

    Oh I will hurt you...remember I am a Jersey girl...you know Sopranos area!

    Well...lets see what magic..Mary can pull with her pixie dust...

    Lisa

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Easy Question]

    Author: Matt (---.disney.com)

    Date: 08-19-02 14:47

    Mary, I work at Reedy Creek Energy Services behind the Magic Kingdom. Being a utility company is probably why it was pretty easy to get the AED in our area (we already had some in a few of the work trucks). I am also fortunate to work weekdays at a desk job. What shift/days do you work? I'll call you one day so we can meet/talk in person.

    Lisa, I'm doing pretty well. I think the peace of mind with the ICD is a great help physically too. I was back to work in a week and this weekend I even mowed my lawn (riding mower- I'm not THAT stupid). I should hear from Shands hospital this week about what's needed to get me on the list. My cardiologist sent the referral and my records to them last week. And I have to agree that having a meeting here would be pretty cool. I can see what I can do to make that happen as well if you're interested.

    Sarah, I'm an ex-New Yorker so if Lisa gives you a hard time, let me know and I can always call some old "friends".

    Have a nice day. Matt

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Easy Question]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 08-19-02 15:10

    Careful Matt... you have been out of town awhile now...

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Easy Question]

    Author: Sarah B--Board Moderator (---.client.attbi.com)

    Date: 08-19-02 15:42

    Hey, Matt ---my hero!!

    Lisa, I'm going to duck behind Matt when you come for me --just so you know.

    later

    S

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Easy Question]

    Author: Larry (216.44.69.---)

    Date: 08-19-02 18:02

    Didn't I tell you people how Lisa used to beat up teddy bears?? Don't mess with her! I play hockey, have 100 pounds on her, and I won't mess with her !!

    As I have often said " I fear no man!......but there are a lot of women that scare the **** out of me". -

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Easy Question]

    Author: Sarah B--Board Moderator (---.client.attbi.com)

    Date: 08-19-02 18:19

    Dear Larry,

    I know, I know!!! I had no idea it would get this rough out here on the board!!

    S

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Easy Question]

    Author: Larry (216.44.69.---)

    Date: 08-19-02 18:31

    We got boards in hockey too.......but it don't get THIS rough.......useally. I mean at least we don't threaten to bring in Tony Soprano! I mean if Lisa did call Tony, I'm kinda sure he we show up just to avoid finding a teddy bear head in his bed when he got home. Ok, I gotta go, I've decided to enroll in the big-brother protection program, so my baby sister doesn't beat me up! Unless of course they may be afraid to let me in............

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Easy Question]

    Author: Mary Sharp (---.proxy.aol.com)

    Date: 08-20-02 01:24

    Matt thanks for the input! I do Monday thru Wednesday,Saturday 3:30 to 9:30 and Sunday 8:15 to 2:15. at Innoventions East the TAPPI exhibit. Would love to have a chance to talk to you!

    Lisa let me know if you guys want to try! I do have a friend that is in group sales for Disney. Tickets I know won't be a problem because I sing in the Candle light Processional and when we sing we get a one day ticket last year I had thirty extra tickets and gave them away!

    If there are any other Cast Members out there let us know if you can help! The more the merrier!

    And LISA if you harm a hair on Sarah's little head We will make sure you get stuck on it's a small world for an hour! I am in attractions and I can have it done! Not even your Jersey Soprano's can handle that! :0)

    Mary S.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Easy Question]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 08-20-02 07:38

    WEll it seem that we have all let off a little "fun" steam here

    Sarah... I think your safe for NOW....but tread lightly my friend...I have enough work for 10 people without you coming up with really good ideas!

    Mary - If you place me within 10 feet of "its a small world' I will give up!

    Lar- must we keep bringing up the teddy bear??? Becarful YOU may find a teddy bear head in your bed!

    Matt and Mary let us know if you guys get a chance to chat Disney style...there is one more Disney guy out there on the message board see if you can track him down.

    Lisa

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Easy Question]

    Author: Mary Sharp (---.proxy.aol.com)

    Date: 08-20-02 08:18

    HA! The SMALL WORLD secret weapon works again! You know what is torture each year we have a FantasyLand 5K to support Arnold Palmers children's hospital and well you have to do the 5K in the FantasyLand attractions so in a 3 hour time frame I rode small world 5 times and did the tea cups three times back to back! I got enough pixie dust to last a life time. But it was for a great cause!

    Mary S.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Easy Question]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 08-20-02 08:53

    Mary.. you are truly brave!

    Lisa

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Easy Question]

    Author: Larry (216.44.68.---)

    Date: 08-20-02 10:00

    Thankfully, when I was at Disney World last August with my wife and daughter, the "It's a Small World" attraction was closed for repair!!! For anyone that doubts that there is a God, I now have proof!!!!

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Easy Question]

    Author: Sarah B--Board Moderator (---.client.attbi.com)

    Date: 08-20-02 12:16

    I still haven't forgiven one of my siblings for taking us on that ride and missing the fireworks because of it. It is one thing to have to sit through and another to miss the really good stuff on top of it.

    S

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Easy Question]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 08-20-02 12:28

    Did anyone notice the topic that says "Easy Question" has the most responces.

    So Mary you see NOTHING is easy with HCM!! ha ha ha

    Or is it the fact we have a bunch of wise guys out there!

    Sincerely,

    Lisa Salberg

    HCMA

    "Chief Wise Guy"

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Easy Question]

    Author: Sarah B--Board Moderator (---.client.attbi.com)

    Date: 08-20-02 14:38

    BOTH!!!!!!!

    little wise guy

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Easy Question]

    Author: Mary Sharp (---.proxy.aol.com)

    Date: 08-20-02 23:33

    So what was that easy question again anyhow? How we are all getting to

    Disney next year or symptoms. The Disney one is alot more fun!

    You have no idea how much these answers have helped me. I had been so depressed this week with the bickering of my Dr.s that I guess I forgot about alot of stuff. It is nice to feel useful again. If there is anything I can do to get this Disney thing going count me in! I live for getting things together! I have pulled off some interesting things!

    My latest achievement was celebrating my Manager's one year anniversary of his heart attack. After the Dr. gave him the ok we took him on Rockin' Roller Coaster and Tower of Terror. The pictures are priceless! If you ever read this Tiger Lilly you rock and you are my best friend!

    Mary S.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Easy Question]

    Author: Sarah B--Board Moderator (---.client.attbi.com)

    Date: 08-20-02 23:39

    Dear Mary

    I'm glad we brought a little light into your life.

    If you want to make Disney happen, you should give Lisa a call directly. I think she is still home this week--973-983-7429.

    take care

    Sarah

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Easy Question]

    Author: Annette (---.proxy.aol.com)

    Date: 08-22-02 11:32

    Count me in on the Disney trip. Wow what a great idea-a meeting and fun rolled into one!
    NOTE: This is a post from the previous forum message board.

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