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  • My Husbands Diagnosis

    [My Husbands Diagnosis]

    Author: Cathy Roberts (198.142.166.---)

    Date: 03-07-02 09:24

    Hi, my name is Cathy. We hail from Newcastle, New South Wales, Australia. My Husband Neil was diagnosed with Cardiomyopathy 2.5 years ago. At the time of his diagnosis his specialist simply told us that "one day" he would have to be on medication for his condition. We never really thought much about the diagnosis or the implications of the condition until January 29th this year when Neil was admitted into hospital with a heart rate of 180beats per minute. Neil was in hospital for eight days, and, after discharge, seemed to be coping okay with things. Tonight, 7th March, Neil was again admitted to hospital after passing out when he went to open our front door. Neil is not coping well at all with the changes that are happening in his life, and, partially because of this, has not been taking his medication all the time. Neil resigned from his job on January 28th this year, and the next day was in hospital. Neil's job was quite stressful and I am wondering if the stress has aided in the acceleration of his deterioration. Neil's family does not have a history of heart problems that we know of, with the exception of Angina, suffered by his maternal grandfather. Neil's dad does not know his real parents, so I guess it could have come from that side. Is Cardiomyopathy more likely to come from one side of the family than the other, ie. the dominant gene is in the father.? Neil has a brother and a sister, should we advise them to get checked out. What is the test for this? We also have an 8.5 year old daughter, how do we get her tested without her fearing she might die? Neil is 42 this year, I am 34, are there any other young families facing this too?

    Neil is struggling with depression also, this is so new to us, and no-one can give us any definites. What is the life expectancy? Thank you for the opportunity to 'air' my feelings, please forgive the length of this . I would greatly appreciate any input you may have.

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    [Re: My Husbands Diagnosis]

    Author: Glen (12.37.117.---)

    Date: 03-07-02 11:55

    Hi Cathy, my name is Glen and I'm from Toronto Canada, I'm 52 and was diagnosed over 25 years ago and do not plan on leaving this earth any time soon. My symptoms were some chest pain, palpataion and irratic heart beat, I have never passed out. I have unobstructed HCM, maybe your husband has some obstruction. If he had an echo then they would know that. I also went thru a lot of depression the first year and thought every little thing like indegestion was the end of me. Eventually you come to a point and say nuts to this and decide to live the best you can with what you have. Your husband should get back on his meds and take them as prescribed, I don't know what he is on but my understanding is that these meds are not meant to be stopped and started. It is definetly something that is handed down from generation to generation. In my case my grandmother and then my dad. Your daughter and anyone else related to your husband should be checked, sometimes symptoms do not show up until later in life. Life expectancy varies, some young apparently very healthy athletes die suddenly from this and others live to a very old age. In my case I live quite well, I ride mountain bikes, golf regular and do not have symptoms while I am on my meds. I also avoid too much alcohol, big meals and coffee, these triggered the palpatation and irradic heart beat in me and he should also avoid very heavy lifting such as heavy weight training.

    Also try to seek out a Cardiologist who has experience in this very rare condition, not all Cardiologists are up to snuff re HCM.

    Feel free to e-mail me.

    Good Luck and I hope husband stays well.

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    [Re: My Husbands Diagnosis]

    Author: sarah beckley (---.dsl.mindspring.com)

    Date: 03-07-02 23:07

    Dear Cathy,

    Welcome. It is a very natural thing to reject your medication. I fought my meds for 15 years before I realized I should be grateful for them. They truly improve my quality of life. This is a very difficult time for your husband and he may not want to ask for help, but the HCMA is a great support system and you all can talk to others who are going through this too, and have gone through it.

    I don't know of any studies that say females carry it more than males, or vice versa. It does seem to be a 50/50 kind of thing.

    Stress makes every one of us deteriorate faster, no question about it. Did Neil resign b/c of his heart or b/c he wanted to? Leaving a job can be stressful too if you have mixed feelings about it.

    If Neil's siblings are biological (you say he didn't know his parents), then they should absolutely get checked. And your daughter. The test is an echocardiogram which is ultrasound on the heart --painless and non-invasive. Siblings and daughter should have health and LIFE insurance before being tested as having cardiomyopathy makes it hard to impossible to get insurance later.

    Hypertrophic Cardiomyopathy is extremely different in everyone. There are lots of young families with it. Young children have it, older people have it. There is no one "life expectancy" number to give you. Many people live a long time with this.

    This is NOT a death sentance disease. However, many people do need to make some adjustments in their lifestyle to reduce the stress ontheir heart.

    I really encourage you to call the HCMA office and ask for suggestions about talking to your daughter--and your husband about this --and also to get more information so it isn't so scary. You will get through it.

    Keep in touch,

    Sarah

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    [Re: My Husbands Diagnosis]

    Author: Phyllis (---.org)

    Date: 03-13-02 11:05

    Dear Cathy,

    Please refer to my message on my board. I new at this e-mail site.

    Phyllis

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    [Re: My Husbands Diagnosis]

    Author: Lucho Monserrate (---.com)

    Date: 03-15-02 15:00

    Hello Glenn: I am 39 years old and was jsut released ferom NIH, where I was diagnosed with HCM (mid cav obst ). Like you, I get very nervous about any kind of pain , I think that will be IT> I am under meds and being treated for mild diabetes. I appreciate your advise and will live as best I can Enjoy and hope for the best.

    Thanks, Lucho

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    [Re: My Husbands Diagnosis]

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

    Date: 03-22-02 14:32

    Cathy..

    1. No HCM is not more likely to come from mother or father.

    2. Yes, all 1st degree relatives should be screeded and the sooner the better.

    3. Testing should include, ECG, Echocardiogram and a visit to a cardiologist.

    4. Many "young" families live with HCM.

    5. Life expectancy is widely varied - it is in many cases compatible with normal life - however risk stat must be done to access individual factors.

    I hope this helps..please feel free to contact us with further questions...Best Wishes,

    Lisa

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

    [Re: My Husbands Diagnosis]

    Author: Anthony deSpirito (---.157.82.236.Dial1.Weehawken1.Level3.net)

    Date: 04-10-02 22:36

    Hi Cathy, my name is Marta from New Jersey and my husband also is diagnosed with HCM. We found out about six months ago. If it wasn't for me setting up the initial appointment I wouldn't be sending you this. We were aware of his family history in the past but of course figured this wouldn't happen to us or at least hoped it wouldn't. But it is. Last week we were told that my husband is a strong candidate for ICD with pace. I was terrified and I know my husband was too. He too leads a streesful life with his job.

    He takes his medicine and is now seriously considering the ICD with pace. The day we were told of how serious it's getting I saw my husband become depressed about HIMSELF. After his cardiologist suggested we contact this web he has become more positive about his longterm outcome. We are both very nervous about what the future has in store, but I can tell you that about a half hour ago he stated that he has found answers to questions and finds it very satisfying in keeping up with information at HCMA (thanks lisa if your reading).

    Bottom line...try to get him to look at some of these responses. The way I see it is if you get a cardiologist who REALLY knows about this and work on your meds or what ever is suggested you can continue, maybe not with everything but at least you can.

    We also have a three and a half year boy who about four months ago got tested for the first time......everythings fine and he will continue to be tested again. Today I explained to him everything and what to expect. I think that if you look at this in a positive way and let them know that there is hope they will except this in the long front.

    Sorry...get carried away....I can talk all night. Anyway please have your husband join this web or at least read some of it, If YOU need to talk or your husband, I have found plenty of ears aboard. He's not alone.

    Hope to hear from you.
    NOTE: This is a post from the previous forum message board.

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