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Mabuhay
04-07-2008, 06:35 PM
Hello everyone!

I am new here, in fact I just found the site today and so far it has been extremely informative. I guess what I am looking for by posting here is what any of your comments may be on the strange 'hcm-ish' situation I have been trying to figure out. This may get slightly long winded, and for that I do apologize.

I never really thought about hcm at all - it never really occured to me to be really concerned about it until my uncle's daughter was diagnosed with such a bad version of it, that they say she will need a transplant to live. Then, my uncle (who is in phenomenal health - big time runner/bicyclist) got himself tested, and the doctors told him he had a very severe form hcm as well. They then proceeded to tell him he should not exercise so strenuously which really upset him. Anyway, he let my voiced his concerns over its possibility of inheritance to my family and thats where the insanity starts.

When I was born, I guess my mom said the docs told her there was something strange with my heart. No big deal at this point, babies bodies malfunction a bit till they get adjusted. The first scary memories I have of something feeling HORRIBLY wrong inside me started at about 10 years old or so. I remember a horrible crushing, knifelike pain in my chest that literally gave me cold fearful sweats and made it impossible to do anything for 5-20 minutes usually. The pain was unbearable and it felt like where I imagine my heart is. These terrifying feelings continued through my childhood and into my adult life.

About two years ago, I was hospitalized for a horrific knee dislocation (tore acl/pcl/mcl/lcl/meniscus) and was in the hospital for a long time. When I gained the ability to think clearly there, I found I was not in the regular hospital rooms. I was hooked up to a variety of heart monitoring equipment and I was on the cardiac level of the hospital. The only answers I got from the doctors at the time was that there was some strange erratic behavior noticed in my heart that could not be explained.

Fast forward to about jan. 2007, and my mom and uncle made all us kids go get some tests done at a heart clinic that is (i guess) known to diagnose hcm. (mpls heart institute, if that means anything). I am not sure on what tests were done, 3 or 4 i think... but on the ekg or whatever it is called, the doctor said he could not figure it out. He basically said that he is not able to rule hcm in or out in my case. at another clinic, I was told the pains i would feel in my chest were esophageal spasms. However, it surely does not feel like my throat is doing weird things like that.

anyway, present day, I am 25, working on finishing up my major (the knee thing put me way way behind) and trying to get things on track again. However, recently I was at the weight room, and after I got done with teh workout, I got extremely lightheaded and fell over as I was walking home. When i looked at myself in the mirror, I had no color and my lips were extremely blue. The 'heart' pains continue to torment me, but they seem slightly different. The stabbing, fast pain has been replaced by dull aches that seem to last much much longer, and scare me much much more. it feels like someone is pushing their hands into my chest and sides with a constant uncomfortable pressure.

I guess that is it. I dont know what any of it means, and I am very very very scared. I dont know if that sounds like hcm symptoms or not, or if it is just a run of the mill heart issue/problem. Also, I stay healthy, exercise as often as school allows, and do no drugs of any kind, whatsoever.

any thoughts or comments are greatly appreciated. Thanks to any of you who has gotten through this small novel of mine!

Bucky
04-07-2008, 08:45 PM
Hi:

I am NOT the expert at this, having only found this site and joined up a few months ago. I would, however, recommend that you get an Ultrasound exam looking specifically for HCM or other heart structure type problems. This would give you a good way to rule in or out HCM and then the Dr.s (and you) can move forward from there.

It is scary to have things going on in your chest knowing you don't have any control over it at that point and you have not the slightest idea of what it is going on.

If you have some more questions call the home office of this organization and ask for person to consult with. They have good advice and can get you pointed in the right direction.

bucky

Reenie
04-08-2008, 07:09 AM
I echo Bucky's suggestion to call the HCMA office at 973-983-7429. It sounds like it's a high possibility you do have HCM and it also sounds like you need a specialist to evaluate you. Given your symptoms I would call the office to talk to the staff soon. The better care you get for your problems the better off you'll be.

gfox42
04-08-2008, 09:43 AM
Yes, call the office! You may or may not have HCM, but getting lightheaded and falling over are not things you should overlook.

Gordon

mbcube
04-08-2008, 05:18 PM
Yeah - I echo the rest. With a cousin & Uncle affected and a history of fainting, you need to get evaluated. Once you know for sure, you'll be able to deal with it. You have some great resources nearby, use them.