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HCMA FORUM ARCHIVE
12-17-2002, 10:06 AM
[im scared im going to die]

Author: mojo (---.cache.pol.co.uk)

Date: 02-06-02 08:24

I am a 52 year old mother from Leeds and have just been diagnosed as having Cardiomyopathy. I also have a bundle branch block in my left ventricle.

Reading recently about people who have this condition suddenly dying has really frightened me and I feel I could really benefit from some positive feedback from people with the same condition.

The consultant I saw recently was not very clear about long term prognosis and qualty of life - would anybody like to share their experiences with me? I would be extremely grateful for any support or help. :)

Regards

Mojo

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[Re: im scared im going to die]

Author: sandra sullivan (---.dialup.mindspring.com)

Date: 02-07-02 23:12

Dear Mojo,

Trust me when I say at one point or the other all of us have had that thought cross our minds.That is one of the problem with hcm, it is next to impossable to get straight answers about our problem.from what i understand sudden death usually!!!! are young athetes. I know I have had hcm for at least 5 yrs that it has been documented. And no one wants to say how long before they decided to look for it. But I had an myectomy 4 years ago and I am living! Maybe not to the standards of people without my problem, but I do have a life and i might not climb mountains or other things my friends can do , But I don't feel left out,they are always finding things to do without alot of walking and steps and sometimes I have to remind myself Sandra you can not do everything. And you know I have learnt, I don't have to. If we go shopping and they want to see every sale in the mall.I say o.k. I will be sitting in the middle on a bench people watching and we joke that's how I save my money. So Mojo our problem is not a death warrent, unless you just let it be. reach out to these people, and trust me they have pull me up.

good luck,mojo and don't you dare give up we need all the help we can get in this world

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[Re: im scared im going to die]

Author: mojo (---.cache.pol.co.uk)

Date: 02-09-02 10:18

dear sandra, thankyou so much for the reply you posted . I had a little weep because it was so good to hear from someone who has felt the same fears I am feeling at the moment. Your words of encouragement have made me realise I am not on my own. I will have to adjust my lifestyle accordingley, as my daughter keeps telling me to. The problem being, I am too independant for my own good sometimes, But it will be a learning curve I have no option but to take.

Thankyou for the hope you have given me.

mojo

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[Re: im scared im going to die]

Author: Patrick (---.we.mediaone.net)

Date: 02-11-02 02:58

Hi Mojo,

Maybe this will help things a bit. I'm not sure which form of Cardiomyopathy you have but I'll assume you have HCM - the purpose of this forum.

First of all sudden cardiac death is very rare relative to all Hypertrophic Cardiomyopathy patients. HCM is not like some forms of cancer where you are sure to eventually die. As rare as it is, you can also vastly reduce it by not doing anything strenous. If you are 52, I'd be careful about lifting grandchildren, if you have any.

There are lots of links on the messages here that will give you more info on HCM including long term prognosis and quality of life. Overall, don't let ominous terms like "sudden cardiac death" scare you too much. :-) Just smile and keep reading the posts on this site. They are very helpful.

Most importantly, discuss your findings here with your doctor. It will help them realize that you want to know more about our disease and will keep him/her on their toes. If you do it constructively, you will get more out of it than if you are just a passive patient.

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[Re: im scared im going to die]

Author: NURSE NANCY (---.com)

Date: 02-13-02 15:50

Mojo and all , I am 5th generation with this.( HCM, HOCM ) At age 52 and with no family history of sudden death .......... your chance is < 1 % , correct most sudden death is in young active athletic people who push it to the limit. I have one of those......... age 26 who will have his myectomy at the MAYO Clinic on the 27 of this month. We have no S.D. Hx. Find yourself a practioner who full takes the time to explain all his statements.

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[Re: im scared im going to die]

Author: sandra sullivan (---.dialup.mindspring.com)

Date: 02-18-02 23:53

Dear Nurse Nancy,

Read your post to MoJo. You and your son will be in my prayers. Tell him my myectomy went better than I expected. It was harder on my family waiting to talk to the doctor after my operation. I improved a little every day. But I had a wonderful sister named Jean that took me home with her and nursed me back to health. I could not have made it without her.She is not only my sister,but my guardian angel

She took me home with her, that way I didn't have to go to a rehab. center. I was so happy, I bet I ate alot better food there. She checked on me 2 or 3 times a night

helped me up and beat me in the back to keep my lungs clear. She is my angel on earth.

So keep thinking postive thoughts and we all will keep you and your son in our prayers.

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[Re: im scared im going to die]

Author: chuck (206.78.110.---)

Date: 02-27-02 15:13

Dear Mojo,

I too, have had thoughts of dying. I am a 51 male that has been recently diagnosed with obstructive HCM. I am presently waiting to be seen at UCLA Medical Center for possible treatment.

I have read all I can find on this condition, and it seems to help to be educated on the subject.

I hope I can see my daughter get married and my grandchildren grow up.

I teach High School, and have a lot of stress in my life. I also agree with one of the other respondents, that food may have something to do with my general feeling.

Keep the faith, and good luck to you.

Chuck Hemans