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    [New to site]

    Author: Lisa R. (---.28.88.91.Dial1.SaintLouis1.Level3.net)

    Date: 01-06-03 10:30

    I met a girl in a cardiac lab 6 years ago while pregnant with my son, she has HCM I got to see her a month ago again while having an echo done and she told me of this site, I have HCM. I was discovered to have this disease while pregnant with my son, so to be shocked by pregnancy then to have these symptoms of not being able to catch my breath after I ate , I ended up going to a cardiologist because I heard a swoosh instead of a heart beat through a stethoscope I was messing with.

    After a doctor visit, and echo, I was told about my life choices, for myself and my son,Then after a few days of discussion with my ob, & family Then finding that there weren't many dr. that would see me since I was such a high risk, we found someone, he is an incredible man, the best paranatologist that could have been sent to me Dr. Michael Paul, he got us through, referred us to a wonderful cardiologist Dr. Patricia Cole. I was induced at 36 weeks, to deliver a 5lb 10oz boy. hospitalized for 5 days, of which 24hrs was in ICU for monitoring, we did well.

    So my symptoms have been mostly getting winded, and a few heart palpitations, I tend to not drink enough fluids, I am never thirsty, shame on me.

    Never fainted, I tend to be a person that will take it head on and get through it, Good thing I guess.

    I have had yearly echoes, with no change and I am mostly told about surgeries I can have done, though I feel I am dealing fine, I talk lopressor 25mg 2x's daily, if I have breathing issues I take another 25mgs. Seems to be working ok.

    I had one situation that scared me a few months ago, I seem to notice My breathing is worse with sugar, when my heart rate goes up from it, I am trying to stay away from juice, I drink zero soda, unsweeted tea, milk, water is my list of fluids. this one day, I had syrup on pancakes and some juice for lunch and may have not had my pill, tried to do some legs lifts while watching tv and found I was feeling warm and uncomfortable. within a few minutes I knew it was more, I started to get nervous since I knew my heart rate was flying, I drank water, no luck, ended up taking 25mgs of lopressor and it was better within a few minutes, I called the doctor to tell her, she said that is what I was suppose to do, if it happens again, take the pill and call her, I can go on a monitor, and that was that.

    When in for visits, there is really nothing I am told new, I feel I am telling her what is up. I sometimes feel lost in this disease. I am 29, 5'7" 140lbs. I don't exercise much, but I am very active, I have been told to keep my heart rate below 100, sometimes walking can put me above that, so time and patience in the exercise field I guess will build me up to be able to do more without getting my heart rate up.

    So a month ago, I notice this blister on my chest, and then another, turns out I have chicken pox's. Go figure, Cardiologist says not to worry on the heart end, with in a few days, I lost my voice, then ended up in the hospital a day later than that with phenomena, while there, my pancreas seemed enlarged and liver was enlarged, after an ultrasound, all seemed to be ok, I also had an echo done, they said no change there, though I was having heart palpation's during the echo, no note was made of that I know of. I was having breathing problems and they didn't know if it was due to a low dose of zannex they gave me or what, the next day my stomach was distended and I was having more problems breathing, I told them I thought I had too much fluids, they ended up giving me lasiks to drop the water and my breathing got better.

    I had not been aware of what heart palpitations where, or felt like, I described something I had felt in the past and nothing was ever really said about it by the dr. then one day talking with someone who had them, she described them, it sounded like what I had felt in the past.

    so I am a month in a half out of the sick zone, and still have no voice, though it is trying to come back, it is described as being hushed, the left vocal cord is paralyzed, I went to a ENT Dr. who said it could take a few months to come back, but the thing is the nerves of your left vocal cord go through your heart, I found that very interesting. I have a cardiology appointment in Feb. for a two year check up, but I am considering finding a new Cardiologist, someone that specializing more in this field. Washington University of St.Louis Missouri, is a great place for me to start I guess in searching for a doctor, if anyone has a suggestion please send it my way. [email protected]

    I have beliefs in hormones affecting this, sugar, large meals, weather......

    and want someone who has some info to give me, other than me saying it to them.

    So this is a long story and I have so much more, but I will be around and can share more as I get more familiar with this site.



    [Re: New to site]

    Author: Sarah B. Board Moderator (12.144.99.---)

    Date: 01-06-03 11:24

    Dear Lisa,

    Welcome. I can't address all of your post right now as I'm at work, but I just wanted to stop and say that you should absolutely see a specialist, but you will probably have to travel a little farther to see somone.

    Please call Lisa, our president, at 973-983-7429 to talk to her about doctors.

    The HCMA policy does not allow us to just post doctor names and numbers. There is a lot that should go into choosing a specialist and it is much too important, so we like to talk to you and really find a good match.

    Take care,



    [Re: New to site]

    Author: Lisa R. (---.56.174.192Dial1.SaintLouis1.Level3.net)

    Date: 01-06-03 15:30

    ok, so the phenomena, should be pneumonia, my husband is making fun of me, I was a obviously not paying much attention to myself today when I wrote my post, oops, LOL!!!!!

    Sorry!, stop making fun of me Brad!


    [Re: New to site]

    Author: Heather (65.247.157.---)

    Date: 01-06-03 16:19


    Welcome to the board!! We are pretty close in age and size.......I'm 30, 5'9" and about 155. So, a little bigger, a little older....... Anyway, about the not drinking enough fluids, as you pointed out, that is a no no......and I would almost swear that's what put me in my 2 1/2 mos. a-fib fit this summer. That was the worst I have ever felt! So, now I have a pitcher in the fridge w/ 64 oz. of water and I fill it and drink it everyday. I do still have my one coke a day, but only one and I make sure I have drank my water. All the cardiologists I have ever seen have stressed the drinking water, drinking water......So, I try. I still tend to run a little short some days, but seeing that pitcher every time I open the fridge door has helped!! Best of luck!!

    NOTE: This is a post from the previous forum message board.