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  • just a few questions

    [just a few questions]

    Author: Kasey Wookey (---.per.openaccess.com.au)

    Date: 04-16-02 00:03

    hey guys hows it going? i just had my 3rd echo cardiogram today was a bit scary but it was shorter then last 2! im still trying to figure out if that is good or not. the nurse even showed me where my hear was thicker so it wasgood.

    i just got a few question i dont know who else to ask but you guys so i hpe you's dont mind. i dont see my cardiologist for for another 2 weeks.

    ok so here goes.. basically what i want to know is when i first started getting symptoms everything seemed cool, it was just every now and then. now its getting real frequent. i am an apprentice chef and im starting to get pains and shortness of breath at work and i cant afford to stop what im doing while we are cooking its way to busy. it is a very stressful job and i dont knw what to do. this is all i have ever wanted to do and now its stressing me out.

    i even get pains just doing nothing. getting out of bed, getting in bed. walking even just sitting. is anyone else like this? im so confused and worried.

    PLEASE EASE MY MIND A LITTLE!!!

    Kasey

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    [Re: just a few questions]

    Author: Kasey Wookey (---.per.openaccess.com.au)

    Date: 04-16-02 00:06

    I also am always very tired. even when i have a decent sleep. last time i was at the doctors they checked my iron and everything and it was all ok.

    does this just come with HCM or wat?

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

    [Re: just a few questions]

    Author: lisa (---.dyn.optonline.net)

    Date: 04-16-02 06:30

    Kasey,

    Lets take this step by step before we worry too much.

    1. What medications are you currently on (and dose)?

    2. What is your septal measurement and are you obstructed, if so what is the Gradient?

    3.Regardless of your answers to the above 2, make sure you are DRINKING enough fluid, perferably water while your working. Whats the old saying, if you cant take the heat get out of the kitchen....Well..I'll bet you sweat a great deal working in that environment, therefore the rule for ALL HCM patients to stay well hydrated is extra important for YOU!

    4. Feel free to call the office and we can discuss these matterss further 973-983-7429.

    Best wishes,

    Lisa Salberg

    President

    HCMA

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

    [Re: just a few questions]

    Author: Kasey Wookey (---.per.openaccess.com.au)

    Date: 04-16-02 13:12

    hey Lisa

    i am currently on Metoprolol Tartrate tablets. i take 200mg a day.

    when i was first diagnosed the cardiologist said the muscle was 50% thicker then it should be. i went for my echo today and the nurse showed me everything and it seems that it is alot thicker then that but yeh. i dont see the cardiologist for another 2 weeks.

    another thing is that all my ECG's show that it looks as if i have had or am having a heart attack. is that normal? does anyone else get that?

    Kasey

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    [Re: just a few questions]

    Author: lisa (208.47.172.---)

    Date: 04-16-02 13:58

    Kasey,

    OK... well 50% is not really what we are looking for here... Ask your doctor what the septal measurement is (normal is between .08 and 1.2cm). Has anyone ever told you you were obstucted or had a gradient?

    Yes, many ECG's look like HCM patients have had prior heart attachs, or at least thats what many are told it looks like. So dont worry about that, if your doctor sees anything that looks like your in danger I would assume he would send you right to the hospital.

    Lets keep fact finding and get the the bottoms of everthing...then hopefully you'll feel better soon!

    Lisa

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

    [Re: just a few questions]

    Author: Brie Rodighiero (---.dialup.sndg02.pacbell.net)

    Date: 04-16-02 15:19

    Kasey,

    I don't know if this will make you feel any better, but I too, feel the same pains, getting out of bed, walking, sitting at my desk and even just watching TV. It really brings me down because I have always been so active growing up and in the last couple of years my energy level has just dropped.

    About 10 months ago, after my 1st echo, my regular doctor told me that my heart muscle was 50% larger then it should be. That's when he referred me to a cardiologist who finally, after a few more tests, diagnosed me with HCM not too long ago. I found out that my heart muscle was 2.2mm to 2.7mm. So maybe yours is close to that, but you should really call your doctors office and ask them what your measurements are and what your gradiant is.

    And don't worry too much, your not alone! I too, know it's stressful and scary but we'll get through it!

    Best of luck!

    Brie

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

    [Re: just a few questions]

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

    Date: 04-16-02 20:54

    Kaysey,

    I am the mother of a 14 year old with HOCM......He was diagnosed at age 7. Well let me give you some good advise that works for me. First of all get a copy of the letter that the cardiologist sends to your GP....just ask and they will cc one to you. On that paper I will bet you that is has things like your gradient and actual thickness of your ventrical. If it does not.........I call call call them!!!!!!! Write down your questions and give them a call!!!!!! You have a right to know!!!!! Its your body. And believe me!!!!!! They don't mind at all.

    Best of luck, Sue

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    [Re: just a few questions]

    Author: Yvette (198.111.209.---)

    Date: 04-16-02 20:55

    Hello~

    When I read your message I thought maybe my husband wrote it! That was exactly the way my husband felt at the beginning, but he kept thinking it was his diabetes, until one day he fainted on top of a machine at work ( he was a supervisor at a Plastics Thermoforming Co.) His started out few and in between, then progressed. Just taking a shower started making his heart pound to the point he thought it was going to jump outta his chest. He recently had a myectomy perfomed at the Cleveland Clinic Foundation. They removed 7mm of his septum wall. He is feeling better, although his surgery was only 3 weeks ago. His echocardiogram showed good signs. If I can help you with anything else, feel free to email me.

    Yvette

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    [Re: just a few questions]

    Author: DENNIS J.BASSETT (---.ts01.qui.ma.net1plus.com)

    Date: 04-16-02 21:14

    when I first read your message I thougt I wrote it.I,ve felt the very same symptoms for years but we,re working on a re,evaluation of my HCM good luck Dennis

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

    [Re: just a few questions]

    Author: lisa (208.47.172.---)

    Date: 04-17-02 11:03

    Just reading through this "thread" has made me think ... Out of the people who have stopped by the website and read these postings, well... we all seem to "understand" how each other feels and find support knowing we are not alone. This is GREAT....

    Now the not so great part.... What about the other 499,500 people in the USA (alone) who have not found our website yet.

    Imagine how great it will be when the world has a better understanding of HCM and patients and families do not feel alone!

    Just a thought!

    Lisa

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

    [Re: just a few questions]

    Author: Kasey Wookey (---.per.openaccess.com.au)

    Date: 04-17-02 11:15

    thanks guys for everything.

    Lisa, no i have never been told what my septal measurement is. but today after rreading everyones messages i requested my letter to my GP so i should be getting them in the next few days.

    Last night a had a really bad night. couldnt breath properly for 2 hours my chest was so tight it felt like i needed to poke a hole in it to releave the pressure and pain. does this happen every so often or not? Is it because i had my ultrasound / echo yesterday? im just worried. today was not such a good day either! keep getting shortness of breath and pain. also im very, very tired and my right arm is getting pains/ aches rto my elbow when ever i gewt this pain.

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

    [Re: just a few questions]

    Author: Anthony deSpirito (---.24.152.156.Dial1.Weehawken1.Level3.net)

    Date: 04-17-02 11:20

    Hi....wife of HCM. Not to scare you but I would contact your cardiologist TODAY regarding your night and today's pain. You can never be too cautious. ESPECIALLY NOW!

    Good luck.

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

    [Re: just a few questions]

    Author: Sarah Beckley (---.dsl.mindspring.com)

    Date: 04-17-02 11:30

    Dear Kasey,

    Marta is correct. You should always let your doctor know when something out of the ordinary happens. Echos don't cause any side effects.

    Please understand that the message board is for support, but we can't diagnose you and we can't help you in a medical emergency.

    Your symptoms sound like heart attack symptoms, but I'm not qualified to tell and of course, I'm not there with you. So you really need to talk to your doctor.

    Please let us know what she/he says.

    take care,

    Sarah

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

    [Re: just a few questions]

    Author: Glen (---.com)

    Date: 04-17-02 15:18

    Hi Kasey, I believe you were just recently diagnosed with HCM, but I recognize some of the symptoms you are having now when I was first diagnosed.

    Shortness of breath, chest pains, sometimes down the arm and they seem to have gotten worse after being diagnosed.

    I went thru a year of panic attacks before I could accept my HCM and learn to live with it.

    Anyone who has had panic attacks believe they are going die and get all the symptoms you described.

    In that first year I went to the hospital many times convinced my HCM was about to do me in and I was having a heart attack. That was 30 years ago and I am living quite comfortably with HCM now.

    I am just suggesting this maybe a possibilty but you definetly need to run your complaints past your doctors in case it is more serious.

    Good Luck, learning to live with and accept HCM can feel as bad as the HCM itself.

    Glen

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

    [Re: just a few questions]

    Author: Susan (---.ceg.com)

    Date: 04-17-02 15:55

    Hi, I too was just recently diagnosed with HCM. I'm 50 years old and I have been having your symptoms for the last 3 years. I could get out of my car and walk inside the store and by the time I got there I would have a tightness in my chest and running all the way down my left arm. My heart would be pounding and I would think okay this is it. After going to two cardiologists and having two echo's, ekg's and a stress test they finally diagnosed me. Now even with meds I still have bad days and good days. Some days I could swear that there is nothing wrong with me and then I get up one day and my heart starts to skip, I can be sitting on the couch and I will get the tightness (it's like I have been running up a hill in real cold weather) in my chest and arm and shortness of breath. It will last from 30 minutes to and hour. I have found that stress, panic, caffeine and alcohol will cause this to be more intense and last longer. After increasing my meds it doesn't happen all the time like before but just an example: Today HAS NOT been a good day, I sat at my desk this morning for an hour trying to get my breath, I got a headache and my heart was skipping. Now I feel great. I guess this is just part of it.

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

    [Re: just a few questions]

    Author: Kasey Wookey (---.per.openaccess.com.au)

    Date: 04-17-02 21:28

    i thought that maybe because i had the echo / ultrasound i was a little stressed. but it was several hours after the echo that i had the pains and i had already been at work after my echo.

    you guys have been a big help. thank you's all so much.

    Lisa, im still waiting for the letters to the GP. hopefully ill get them soon.

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

    [Re: just a few questions]

    Author: Anthony deSpirito (---.157.80.111.Dial1.Weehawken1.Level3.net)

    Date: 04-17-02 22:47

    Hi, wife again of HCM, Marta from New Jersey, sounds like you feel a little better. If this will make you feel any better I spoke with my husband today about what you felt like last night and today and he said the same thing happens to him every so often. I guess as Glen said you have to learn to live with this and recognize all the inconviences of the symptoms. But by all means keep in touch with your cardiologist.

    Sounds like stress (which I believe you are....don't blame ya) is a trigger to these kinds of systems to some. It is for my husband.

    I know this is not happing to my body and can only image how everyone feels but

    I can you tell finding this web and reading it has made me look at HCM in a positive way in the sense of learing how to live with it on a DAILY basis (emotionaly and physically). Everyone is wonderful on support.

    Hope you sleep well tonight
    NOTE: This is a post from the previous forum message board.

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