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  • Unpredictability of abilities

    [Unpredictability of abilities]

    Author: Sue (---.howard01.md.comcast.net)

    Date: 09-22-02 19:45

    I have hypertropic cardiomyopathy (probably not the familial HCM) and have had an ICD put in because of V-tach runs. I was having frequent near-syncope episodes when taking a dieuretic for high blood pressure. My HCM specialist took me off the dieuretic and put me on Verapamil and Altace. The doses have been adjusted and I have been feel pretty good for several weeks. Sort of thought things had been "fixed." BUT...last night went out for dinner and then could barely walk to car. Three steps and I was out of breath. There were lots of sets of three steps, sometimes only one or two, until we finally got to the car.

    The unpredictability of this type of situation frightens me. What if I had been somewhere on business instead of out with my husband? What if we had been approached by an unsavory character? (We were in a very mixed type urban neighborhood.)

    Is this unpredictability common among people with HCM? How do you handle it? I was worried before about passing out. Now I'm worried about getting myself somewhere and not being able to get back.

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    [Re: Unpredictability of abilities]

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

    Date: 09-23-02 00:57

    Dear Sue,

    You should let your doctor know about your episode, first of all, to make sure you are ok.

    Secondly, yes, I think lots of us have lots of ups and downs in how we feel and what we can do. I always carry my cell phone, even if I'm just going to the post office or a few blocks away and I make sure people know where I am as often as I can. I live alone and a friend of mine calls me everyday to make sure I'm ok. If I get tired, I sit down. I don't go in unsafe places alone or even suspect places. My life may sound limited, but I don't feel that really. I've been to South Africa, for example, and spend a lot of time in downtown Chicago. However, I do spend most of that time with other people. When I am alone, it is in busy places or safe places. That is really the most I think I can do.

    If anyone else has suggestions, I'd love to hear them too.

    S

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    [Re: Unpredictability of abilities]

    Author: Marv W (---.evrtwa1.dsl-verizon.net)

    Date: 09-23-02 01:04

    I just had a bad day myself. My Shelty puppy trashed my daughter's yard and I spent 15 or 20 minutes bent over picking up his "decorations." I think I was dehydrated-- visiting my daughter and away from my usual bottle of water on my desk-- and I am sensitive to bending over. I thought I was going to die. Out of breath, palpitations, near-syncope, and chest pain for the first time in six months. Is it this way for everyone? Is HCM a lurker, waiting to jump out and let you know who is calling the shots? Marv

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    [Re: Unpredictability of abilities]

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

    Date: 09-23-02 03:07

    Sue,

    The first thought that came to my mind was "welcome to my world". And I don't mean that in a negative way, that was just my first thought. This is the way I have been for the last three years. Like Sarah had said, I too carry a cell phone. And most of all for our own safety and especially for the others around us, I feel we have to very aware of our limitations, especially when driving. I have been stranded many times where I have needed to get help getting home. I don't go on any out of town trips alone. You know how it can be, one mintue fine and the next thing you know everything goes to **** in a hand basket. With me it is so unpredictable and often enough that I have been unable to work, much less do much planning ahead of time. It's limiting but, hey we're all human and have limitations. But I have found, that with a great support network, I have adjusted to it pretty well and I am thankful for all of the times that I can do what I want. I'll have an occasional pitty party for myself, then get right back to being thankful for all the good I have. Hey it's all Good!!

    Steve

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    [Re: Unpredictability of abilities]

    Author: Heather Irwin (65.247.157.---)

    Date: 09-23-02 12:18

    This is exactly how I've been feeling since my new dx of A-Fib.......One minute I'm fine and the next........bam, nausea, SOB, heavy legs........It's very frustrating. I've never really been limited like this.......I'm hoping it will go away, once I get the A-Fib under controll, but it may be something I'll have to learn to live with.....

    Heather

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    [Re: Unpredictability of abilities]

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

    Date: 09-23-02 23:18

    I'd like to hear about all you people who replied to this message as to what type of HCM you guys have and things like measurements etc.

    I feel like an outsider here as I have never experienced any of the things you mention. I have apical HCM, a septal thickness of 22, non obstructive and have had this for many years without symptoms (well minor) until last year. Is this what I have to look forward to? Is HCM a progressive disease or are the symptoms dependent on the type you have?

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    [Re: Unpredictability of abilities]

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

    Date: 09-23-02 23:26

    Dear Sandy

    Everyone with HCM is different. It has such a wide range of progressions and expressions I wonder how it is even still called the same thing when some people have no symptoms but die young and some have lots of symptoms but live to be 80.

    You should also understand that it is usually the more symptomatic or people needing surgery that post here the most since we will have more cause for alarm, desire to research, kvetch, etc.

    Take good care of yourself, see a specialist, take your medication and take it a day at time. Most people's septum doesn't grow once they are full grown adults unless they are having arrhythmias that damage the heart. It is not progressive in the sense I think you mean like tumors grow.

    No one else's experience is an indication of what is in store for you. Just take good care of yourself.

    Sarah

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    [Re: Unpredictability of abilities]

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

    Date: 09-24-02 00:47

    Sandy,

    To echo what Sarah says, everyone is different in their own way. I've found that just about the time you think someone is like you, there are always differences. I too have Apical HCM and Atrial Fibrillation. I got a pacemaker that has helped with A-Fib, but it's still there. Life is a roller coaster, enjoy the ups.

    Steve

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    [Re: Unpredictability of abilities]

    Author: Sue (---.howard01.md.comcast.net)

    Date: 09-24-02 18:57

    Thanks, everyone, for the reassurances that I'm not alone and for the great philosphy--Life is a roller coaster, enjoy the ups! I am enjoying most of the ups and will take a few added precautions (the cell phone especially--a good excuse to get a nice little one like I want) in case I hit a down at an inopportune time. I'm back up now and hoping to stay there for a while. Sue

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    [Re: Unpredictability of abilities]

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

    Date: 09-24-02 19:10

    Dear Sue

    You betcha!!! A laugh a day keeps the blues away.

    S

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

    [Re: Unpredictability of abilities]

    Author: Millie (---.26.123.177.Dial1.Philadelphia1.Level3.ne)

    Date: 10-03-02 08:11

    You mentioned you were out to dinner with your husband. Not to be rude, but did you eat alot? I know when we're out at a restaurant and my son eats alot or too fast, he gets palpitations, breathless and needs to stop walking. After that his mood changes because he's not feeling well. Don't be insulted about my question "did you eat alot." I've learned to play detective all the time with this disease and look for patterns.
    NOTE: This is a post from the previous forum message board.

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