[Just found out...]

Author: Ric (---.ipt.aol.com)

Date: 03-09-02 04:04

I'm only 28 years old and I've just been told I have this problem. I have an uncle who died of this problem so i was extremely freaked out when I was told I have it too.

I'm encouraged by reading posts on here from people who have lived with this condition for a long time. And in reading about the disease itself I understand that there's not much difference between an athletic heart and one with HCM.

About 3 years ago I stopped working out, but for about a year before that I had been going to the gym on an almost daily basis and did cardio for 45-60 minutes every day.

I'm hoping this means I don't actually have HCM, just an unusually athletic heart... I've had no symptoms and if it were not for a chest x-ray that scared the heck out of my doctor the diagnosis would have never been made.

So I don't know... maybe I'm in denial... it's too much of a coincidence that someone in my family has died of this disorder before... at this point I'll have to admit it's likely I have HCM.

So how long before I can expect to start experiencing symptoms? What's all this about the sympathetic nervous system aggrevating the situation(drkoop.com) does that mean I shouldn't watch suspense-thriller type movies?

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[Re: Just found out...]

Author: Glen (12.37.117.---)

Date: 03-11-02 09:31

Hi Ric, my name is Glen and I was diagnosed in my early 20s, that was about 30 years ago and I am still living a good quality of life, I ride mountain bikes and golf regularly walking most coarses. Although you are being diagnosed now, you were born with this condition and in some cases some people never get diagnosed and live to a good old age. Sometimes like in your case it is only discovered during a regular check up. Unlike you I did have symptoms like some chest pain, palpatation and irratic heat beat.

You say you had a chest x-ray, it would take more than that to confirm HCM. Your ECG would probably be a bit abnormal and they would do an Echo test possibly along with an exercise stress test. That would confirm where the enlarged muscle is, how much and whether it is obstructing.

Have you had this done??

As to when you can expect symptoms, you may never or they could start at any time. The fact you do not have any is good and could mean your HCM is not severe and there may not be an obstruction. I do not have an obstruction, but do get some symptoms if I don't take meds and my heart gets stressed under certain conditions like drinking too much alcohol say at a party or eating a big meal, these both seem to trigger my symptoms.

As far as sympathetic nervous system I have never heard that term before.

People with HCM because of the way the effected muscle developed can have the electrical signal that makes the heart beat go irratic and this can happen under stress, that is the cause of the irratic heart beat. Maybe that is what you are referring to.

Sounds like you may have more tests ahead of you, keep me informed or if you have other questions, feel free to e-mail.

Good luck and stay well

Glen

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[Re: Just found out...]

Author: sarah beckley (---.dsl.mindspring.com)

Date: 03-11-02 23:59

Dear Ric

I'm very glad that you found us. It is very scary at first, but Glen is correct when he says that you may never have symptoms. I've not read Dr. Koop's stuff either, could you post the url here?

As for going forward, the HCMA has a great book about living with HCM that I recommend --and also membership--(I recommend) as they have lots of great advice and resources for you.

My main concern right now is that, as Glen pointed out, your echocardiogram (or lack thereof?). It is very important to know what the echo says. Have you been put on any medication? The echo tells you how thick the heart walls are and if the thickness is obstructing blood flow through the heart.

And your uncle. See, some people with HCM are prone to get ventricular tachycardia and other are not. The only way to know if you will or won't (as far as I know) is to have an electrophysiology study (outpatient procedure where they snake a cathether up into the heart and check for bad arrhythmias). If your heart is likely to go into vtach or vfib, then they will implant a defibrillator into your chest that will shock your heart back into a normal rhythm if it happens. This saves lots of lives. This is what VP Dick Cheney has. If your uncle died very suddenly without any warning, then this could have been what happened to him. It DOES NOT mean that you will too or that you are guaranteed to be prone to vtach. It just means that you should have an EPS to make sure.

My brother, mother and I all have HCM. Have all of your family been tested? They should be, especially your uncle's kids and siblings, and your siblings. One of your parents may have it too. My brother is permanently in atrial fibrillation but he is still very active and runs an internet consulting firm, travels internationally and does yoga, plays tennis.

Please keep us in the loop on your well-being.

Sarah