[Early Detection]

Author: Stew Krug (---.proxy.aol.com)

Date: 04-03-02 20:16

My son Matt suffered a Sudden Cardiac Arrest [SAC] due to HDM last summer. He passed away 2 weeks later. I am curious how your children, etc. were diagnosed. In hindsight the only symptom we observed was a periodic discomfort that Matt felt in his chest. He would sort of push in at the center of his chest. He would always say that nothing hurt. [We have no family history to clue us.] Many of you seem to have been lucky enough to have early diagnosis - is it just the luck of the draw at getting a good doctor?

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

[Re: Early Detection]

Author: Jacki (206.61.184.---)

Date: 04-04-02 02:50

Hello,

First of all I am so sorry for you lose! We lost my mother 3 years ago to the disease and I miss her very much.

It was pretty much luck and an attentive doctor that noticed my sister's hypertropic cardiomyophathy. She had a migraine and when she went to the emgergency room for that they noticed that she had extremely high blood pressure. When the doctor listened to her heart he heard a small irregularity which had never been detected by any other doctor before, and according to some doctors is not always there. He did a chest x-ray of her and noticed an enlargement of her heart and refered her to a wonderful doctor at a children's hospital.

I guess it just depends on the symptoms and the circumstance. My sister is still very healthy and asymptomatic. I really don't think that many people do know unless there is a family history. My mother's went undiscovered until she was 47 and had her first heart failure.

Jacki

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

[Re: Early Detection]

Author: Sarah B. (---.dialup.mindspring.com)

Date: 04-04-02 09:25

Dear Stew

I'm so very sorry for your loss.

Sadly, your son's case is much too common. Many youngsters don't really have any symptoms untill they have a heart attack.

My family's heart problems go way back, so when they heard murmurs in my brother and myself, no one was surprised.

my deepest sympathies,

sarah

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

[Re: Early Detection]

Author: lisa (208.47.172.---)

Date: 04-05-02 10:48

Stew,

As we have discussed in the past only improvements in public awareness, better pre participation physicals and quality health care are going to help to stop these events in the future.

I think of Matt daily and please know you are in my thoughts.

Sincerely,

Lisa Salberg

President

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

[Re: Early Detection]

Author: Patricia wonderly (---.158.81.240.Dial1.Buffalo1.Level3.net)

Date: 04-07-02 13:45

Dear Stew:

Hi, I am a 38 year old mother of 3 young children. 2 years ago I was diagnosed with HCM (first in my family!)-Unexpected and out of the blue! I now have an ICD and take medication.

I too, am very concerned about early detection for my children. They get yearly echocardiograms..they are now 5, 8, 10 years old.

I was saddened to read your e-mail. I am very sorry for your loss. Please don't blame yourself for not knowing..How could you? Be proactive and get everyone in your family checked out for HCM as soon as possible. join this group and stay informed.

Peace to you and your family.

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

[Re: Early Detection]

Author: Paul Murphy (---.dsl.mindspring.com)

Date: 04-16-02 01:24

Hello Stew,

I am heartbroken having read your post, and I send my sincere condolences on your loss. My now 12 year old daughter was diagnosed with HOCM last summer, as you say it, by the luck of the draw. In for a shot for summer camp, her pediatrician noticed a murmer he had not heard before and referred her to a pediatric cardiologist. Her PCP was not expecting anything really serious (and was shocked at word of her diagnosis);he was just being cautious.

My prayers are with you,

Paul