Want to know

[Daisy]

How many of you have an ICD just because you have HCM? I do not have any arrhythmia problems so far. I am 43 years old. My doctor wants me to have one because my mother died suddenly at the age of 62. I am inoperable and have been symptomatic since 1999. If you have an ICD because of your diagnosis only, please tell me how you feel about your decision.

[Reenie]

Re: Want to know

Daisy,, my husband has an ICD because his septum is over 3 cm thick. That's his only risk factor when deciding whether or not to place the ICD. He has no sudden death in the family, no fainting, no history of arrhythmias, and no adverse blood pressure responses. Does that answer you questions?

Reenie

[Daisy]

Re: Want to know

How does he feel about his decision to have it implanted?

[Reenie]

Re: Want to know

To be honest he's thought "Why did I do this?" before. But he knows that he wants to be here for me and the kids as they grow older. His ICD has never fired or even recorded something odd but he was told that his risk of sudden death would increase by about 2-5% each year with such a thick septum. His ICD doesn't ever bother him and he's used to it now. It was implanted 3 years ago and he was 35 then. I'm glad he has his "insurance policy" in his chest.

Reenie

[Sarah]

Re: Want to know

Hi,

A couple things to know --1. you can use the search function here (link it above in the red link cluster) to review all ICD-related posts which will address everything you asked about and more and 2. there are medical guidelines for getting an ICD.

It works like this: there are five known risk factors for cardiac-related sudden death and if you have 3 or more, an ICD is a really, really good idea. If you have 2 or 1, then we get into a a discussion of which one, how bad and how high.

The risk factors are ventricular tachycardia, a septum of 3cm or more, incorrect blood pressure response to exercise/stress test, a history of cardiac arrest or fainting, and a family history of sudden death.

Reenie's husband is a good example. His septum is really, really big, so he got even though he doesn't have a lot of other factors. Someone else may have tons of ventricular tachycardia, and that would also be a good idea. Some doctors disagree about whether 1 death is really enough to be called a "family history." However, if you had 1 death and vtach, well that is a strong indication you should have an ICD.

Talk to your doctor about your factors and understand how you are being evaluated. Also find out how many they implant every year and their infection/complication rates. You are entitled to know. You can choose to go somewhere that does them all day, every day if your local place is not up to par.

They do have a small rate of infection or lead breakage, but they get better all the time. I have NEVER heard anyone say "I wish I hadn't gotten my ICD." on this board (this is after reading almost every post for three years).

take care,

S

[Daisy]

Re: Want to know

Thanks for the replies. My septum is fine, it is my lower left wall that is extremely thick. I appreciate your input. I have read all the ICD messages and have seen a specialist. I just wanted to hear from folks that have the same background and medical profile.

[Sarah]

Re: Want to know

Dear Daisy,

Please see Sue Brown's post under ICDs and Pacers called "thanks for my life" --I think this link may work: http://www.4hcm.org/phpBB2/viewtopic...274&highlight=.

S