[Fiance and daughter diagnosed.]

Author: Kristy (---.itc.gu.edu.au)

Date: 10-31-02 00:54

Hi everyone.

My name is Kristy and for the last two years my family has been living in constant fear of being dianosed with HCM. You see, my fiancee's mum died at age 38 with no warning and just 3 months ago his cousin died from HCM at age 31. We also have a one year old daughter who has a hole in her heart but we have been told that it is too early to diagnose her, and now i am petrified that something will happen to them. Does anyone have any suggestions on how to handle the stress of knowing that your nearest and dearest could just die on you woth no warning?. I think that the not knowing is the worst part, as his grandma has HCM and she is 78.

Please help, i think that i am going to go crazy.

Thanks,

Kristy

PS I dont think that this is an Australian website and i am getting rather distressed as our cardiologist doesnt seem to know much about it, and doesnt seem prepared to help them. They are only "thinking" about medication and defibrilators when i dont see anything to think about!!

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[Re: Fiance and daughter diagnosed.]

Author: maura mendoza (---.proxy.aol.com)

Date: 10-31-02 07:24

Kristy,

You certinaly have your load of worries ! Lisa will most likely guide you in a direction that you can find some comfort in . I cannot imagine the fear you are living in. I know how serouis this is, I lost my son Travis on August 22nd, he was 14 , un-diagnosed HCM.....I am not revealing his death to scare you , but to somehow comfort you in knowing that you have an upper hand on this with a head start in knowing they have this diesase. I have learned that Diagnosses is such an advantage... There are lots of folks here with knowledge on HCM, utilize this board, seek and recieve your answers here for starters ! Prayers are w/ you , Maura

Mother to Travis Rest in Peace my beloved boy 7-9-88- 8-22-02

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[Re: Fiance and daughter diagnosed.]

Author: maura mendoza (---.proxy.aol.com)

Date: 10-31-02 07:24

Kristy,

You certinaly have your load of worries ! Lisa will most likely guide you in a direction that you can find some comfort in . I cannot imagine the fear you are living in. I know how serouis this is, I lost my son Travis on August 22nd, he was 14 , un-diagnosed HCM.....I am not revealing his death to scare you , but to somehow comfort you in knowing that you have an upper hand on this with a head start in knowing they have this diesase. I have learned that Diagnosses is such an advantage... There are lots of folks here with knowledge on HCM, utilize this board, seek and recieve your answers here for starters ! Prayers are w/ you , Maura

Mother to Travis Rest in Peace my beloved boy 7-9-88- 8-22-02

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[Re: Fiance and daughter diagnosed.]

Author: Lisa Salberg (208.47.172.---)

Date: 10-31-02 13:37

Kristy -

Has your fiancee been to a cardiologist and had an echo? if so what are the measurments of his heart?

You will have to wait a little while to know for sure on the little one...screenings every few years until the age of 10 then every 12-18 months will do. You have the power of knowledge and the treatment options to do something to protect your family...so do not waste much time worring as it will not change anything.

You have found the right place to stay infromed and to find others who understand...please stay informed and connected via the board.

all the best,

Lisa

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[Re: Fiance and daughter diagnosed.]

Author: Board Moderator (Sarah Beckley (---.client.attbi.com)

Date: 11-01-02 13:34

Dear Kristy,

Do not live in fear. Get treated. There is an Australian HCM group, but I don't know if they are still active, the link is www.cmaa.org.au.

If your doctor isn't treating you, then you need to find a new one. With 2 deaths in the family, an ICD should not be talked about, it should be properly evaluated --look back at the ICD posts here and you will find all the risk factors discussed. If finance has 2 or more, then he needs an ICD. You will all sleep better knowing he is protected.

The worry and the fear will drive you crazy if you let it. The reality is that only 1-2% of all HCM patients die suddenly each year. It sounds like your family has a higher risk than that, certainly, but it is still low. The harsh truth is that anyone can go at anytime from anything and if you worry about it too much, you'll never get out of bed.

yes, this is all very scary and you should definitely talk to each other and maybe get some counseling b/c HCM can be a hard road. Take care of yourself and learn to carpe diem, and lean on the HCMA.

take care,

Sarah