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  • HOCM - hubby

    [HOCM - hubby]

    Author: Sara (---.reverse.accesscomm.ca)

    Date: 04-12-02 07:39

    Hi,

    My husband has HOCM and was diagnosed when born. He is now 36 years old and finally listening to the doctors when they tell him he can't work.

    The condition also appeared in 3 of his brothers (he's the 5th of 5). They found the condition because on of his brothers died of massive heart attack at the age of 7. They tested all the boys as they were born and only one showed no sign of it.

    Right now, he is on the waiting list to be tested for the dibfibulator to see if he qualifies for it.

    If anyone can give us more information about this procedure we would appreciate it immensily.

    Thank you

    Sara

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    [Re: HOCM - hubby]

    Author: Sarah Beckley (---.dsl.mindspring.com)

    Date: 04-12-02 08:11

    Dear Sara

    How long is this waiting list? What are they looking for to "qualify" him? Are you seeing an HCM specialist? Are they requiring an electrophysiolgoy study? How are his other brothers? Do you have children? If so, have they been tested? Sorry for the barrage of questions, but with the family history, I am worried about sitting on a waiting list and making sure you are seeing an HCM specialist.

    When evaluting someone for an ICD there are 5 main factors they look at: is the thickening over 30mm? is there a personal history of heart attack? is there a family history of sudden death (in his case yes), is there a personal history of ventricular tachycardia? and when you exercise, does your blood pressure drop?

    2 or more Yes answers means an ICD (implantable cardioverter-defibfillator) should be considered. The EPS study is not as reliable as once thought and there are "false" negatives.

    Please call the HCMA office at 973-983-7429 if you need to find an HCM specialist, want to talk to Lisa directly about ICDs and to be put on the mailing list.

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

    [Re: HOCM - hubby]

    Author: Sara (---.reverse.accesscomm.ca)

    Date: 04-12-02 08:19

    Sarah,

    Don't worry about the barrage, I'm kinda used to them.

    The waiting list, well, we aren't sure. The other day I talked to the secretary and she told me that what they are waiting for is a short term bed when the doctor is available. I'm not sure what they are looking for, as no one has seen fit to send us or give us any information. He is seeing a heart specialist here in town but the procedure is out of town. His other brothers that are still alive, well, one has lung problems on top of the heart problem, but his condition isn't as severe as my husband's. His other one, seems to be fine, maybe if he does have it, it is very mild. (we don't associate with his family much) Yes, we do have children, 3 boys. They were supposidly tested at birth, but none of them show the condition. The youngest was born with a murmur but has since closed.

    I guess we are both scared as to what is going to happen because of the lack of information.

    We live in Regina, Saskatchewan, Canada and to get this procedure done, we are going to have to go to Edmonton Alberta, so that in itself is scary.

    Any information anyone can give us would be very appreciative.

    Like I said, we are basically in the dark. We have nothing to show results of his tests or anything.

    I almost lost him two years ago to a major heart attack and am scared of it happening again.

    Sara

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    [Re: HOCM - hubby]

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

    Date: 04-12-02 10:22

    Hello,

    I would suggest you reach out to Toronto, and Dr. Doug Wigle and associates. While I know the Canadian system works much differently then the US system I think they may be able to offer some assistance.

    2 years ago did he have a heart attach or a sudden death that was aborted?

    all the best,

    lisa

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    [Re: HOCM - hubby]

    Author: Sara (---.reverse.accesscomm.ca)

    Date: 04-12-02 10:23

    It was a heart attack and if I wouldn't have gone home at lunch time when I did, he wouldn't have survived.

    What would have been more tragic, is that he was watching the two younger boys, (age 3 and 4 at the time) and he was so out of it, that he couldn't watch them.

    Sara

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    [Re: HOCM - hubby]

    Author: Sarah Beckley (---.dsl.mindspring.com)

    Date: 04-12-02 17:49

    Dear Sara

    You should get the kids echocardiogram every few years as HCM "grows as you grow" --it usually doesn't show up until the early to mid teen years. I am not saying this to make you worry, but with such a high incidence rate in the family, it is much safer to screen on a regular basis --unless it was a genetic test they had at birth?

    take care, and good luck,

    Sarah

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    [Re: HOCM - hubby]

    Author: Sara (---.reverse.accesscomm.ca)

    Date: 04-12-02 19:04

    I don't think the testing was genetic at birth. I know, ECG, Ultrasound for sure. We will be checking into that more.

    Also, I plan on emailing the doctor that is supposed to be doing the procedure for my husband, and get some information from him.

    Sara

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    [Re: HOCM - hubby]

    Author: Yvette (64.109.159.---)

    Date: 04-14-02 22:29

    Hello Sara~

    My husband also has HOCM, he is 29. We found out after telling his doctor numerous times that he was experiencing alot of chest discomfort, palpations and gallops. The first test was a regular EKG, but it was off the charts, so the doctor sent him for a stress test, which was also crazy off the charts. So to make a long story short - 2 weeks ago he had open heart surgery at the Cleveland Heart Clinic to have a myectomy performed. When he goes back in 6 weeks for his check up they will do another echocardiogram to determine if he needs a pace maker. They were so good there Sara - I just cannot stress enough how well they did. I was worried about the risk of infection due to my husband also being a diabetic, but his recovery is coming along well. He experienced some chest pain today, which was a little harsh on him, so we do have to call the doctor tomorrow to find out if that is normal. I wish you the best with your husband. If you are interested in the Cleveland Heart Clinic - they have a website - Cleveland Clinic Foundation.com - Dr.Lytle was the surgeon for my husband. They specialize in HOCM. They are wonderful there and it was well worth the trip we made - we live in Michigan. Well maybe we will speak again.

    Yvette Nimphie

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    [Re: HOCM - hubby]

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

    Date: 04-16-02 21:00

    Hi Sara,

    My son is 14 and age 13 had and ICD implant. He had done pretty good over all......he does seem a bit better. I don't regret it for one second!!!!! I don't worry as much....he has his own little "life support" incase anything happens...no set off so far I am happy to say. Derick was never put on a waiting list? But like Lisa said....Canada is different than the US. Good luck to you and your husband!!!!

    Sue

    PS.......there is a web sight....called "thezapper" tons of info on ICD's...and lots of personal experiences......
    NOTE: This is a post from the previous forum message board.

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