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  • Family history of HCM

    [Family history of HCM]

    Author: Lea (---.rcc.org)

    Date: 08-12-02 13:51

    I found out a couple years ago that my grandfather had HCM. He has since died of other causes but the HCM diagnosis came about from all the tests that he took for his other illness. Two of my aunts and uncles have subsequently been tested and my aunt has it but my uncle does not. My mother has yet to be tested. My question is should myself and my brothers and sisters be tested even if my mom ends up not having it? Also, since no one in my family has actually died from it, does that mean we are at low risk and can forgo testing? By the way, my mom and her siblings are in their late 40s and early 50s. Myself and my siblings are in our teens and 20s.

    Thanks for any input.

    -Lea

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    [Re: Family history of HCM]

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

    Date: 08-12-02 14:18

    Dear Lee

    While it is very rare that HCM skips a generation, it does happen. AND it also can wait to appear until your 50s and 60s, so mom may not have it till later. So she and her sibs need to be tested every 5 years and the kids in their 10s and 20s every 1 to 2 years (the intervals can get longer the older you are with the youngest teens going every 12-18 months as they are still growing).

    It would not be prudent to assume anything about your family's strain of HCM until you are tested and evaluated. It is positive that there is no family history of sudden death, but there are personal risk factors that carry a lot of weight (septal walls over 3cm and ventricular tachycardia). And the only way to find out if you have those risks is by getting screened.

    Insurance will pay for screening (which is an ECG and an ECHO) since it is in the family.

    hope this helps

    Sarah

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    [Re: Family history of HCM]

    Author: Julie E (---.fuse.net)

    Date: 08-13-02 14:21

    Sarah,

    I would not say it is always safe to assume that Ins will pay for testing. You need to check your individual policy. After being diagnosed I ran out and had my 2 children tested. My husband's INS CO DENIED PAYMENT SAYING" FAMILY HISTORY IS NOT COVERED". I appealed 3 times and they finally agreed to pay, but I believe a major part of their decision was because they knew we we leaving due to my husband changing jobs. Our new Ins does pay, about $1000.00 of a $1400.00 bill. Check your policy if that is a concern to you. Obviously with my kids I will do whatever it takes to get them tested whether paying myself or Ins paying.

    Julie

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    [Re: Family history of HCM]

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

    Date: 08-13-02 14:56

    Dear Julie

    I stand corrected. What a crappy company you had. I've never had a problem getting echos --hmo or otherwise.

    S

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    [Re: Family history of HCM]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 08-14-02 09:27

    Lea,

    Yes, you and your sibilings should be screened, it is very possible fo your mom not to present the condition and your generation to express the gene. SO A BIG yes get screened. Talk to your doctor prior to screening. explain the family history and IF you have EVER had any symptom that may be related to HCM TELL the doctor..example have you ever felt dizzy, lightheaded, felt palpitations, had shortness of breath, chest pain, fatigue, pain in the neck or jaw or anything else that may be cardiac in nature...TELL THE DOC!

    If you have any symptom that may be cardiac and you have a family history of HCM an insurance company will find it nearly impossible to turn down the claim.

    If you have any other questions let me know!

    Best wishes,

    Lisa Salberg

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    [Re: Family history of HCM]

    Author: Julie E (---.fuse.net)

    Date: 08-15-02 13:55

    Hi Sarah,

    I have never had a problem with Ins paying for me because I'm diagnosed.It is my kids going for "screening due to family history" that was a problem. Luckily our new Ins is better.

    I'm new to this site and am glad I found it. I do have an ICD and go to a site for that, but having this just about HCM is very helpful.

    Julie in Cincy

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    [Re: Family history of HCM]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 08-15-02 14:05

    We are Happy you found us Julie!

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    [Re: Family history of HCM]

    Author: Julie E (---.proxy.aol.com)

    Date: 08-17-02 22:13

    Thanks for the welcome Lisa,

    It is amazing when I read posts here and how so much of it is similiar to my family.

    I lost my 37 year old brother in 97 to sudden cardiac arrest. I was diagnosed after he passed away. Neither of us knew we had this condition...hence the silent killer!

    My ICD was implanted after an EP study in 99. I have had 6 shocks, but the Dr feels they were all inappropriate.

    My sister-in -law has yet to have my nephew checked. He is now 12 and very active in sports. I am going to ask her to visit this site. Maybe truly understanding this condition will help her. I really think she is afraid.

    Julie E

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    [Re: Family history of HCM]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 08-18-02 10:46

    Julie

    I can not say it strongly enough the boy must be screened and followed! It is so important. While I know it is hard for her after the loss of a husband...what will she feel like if she lost her son too...knowing something can be done to protect him...It would be too tragic. Please have her stop by the site or send us her address and we will send an information packet to her directly.

    If your ICD has misfired 6 times I would have to really wonder if those who are monitoring it for you are setting it properly, a visit to a good HCM center may correct these problems for you.

    Best wishes and once again we are happy to have you here!

    Lisa

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    [Re: Family history of HCM]

    Author: Brian Cole (---.server.ntl.com)

    Date: 08-18-02 15:29

    Julie i am the first in my family to have heart problems but i have been told by my doctor to have ALL my family screened.Telling my 11yr old son was hard.He too is active but it is better to be safe than sorry.I am 36yrs and also the youngest of 7 so we have nephews and nieces to be done as the problem as my doctor says can miss a generation.I hope you can sort it all out

    Brian

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    [Re: Family history of HCM/HCM CENTERS]

    Author: Julie E (---.proxy.aol.com)

    Date: 08-19-02 12:40

    Lisa,

    Curious where the closest HCM center is to Cincinnati, Ohio?I did go to Cleveland Clinic after I was first diagnosed in 97 and saw Dr. Gary Haas. They did a stress echo and that was about it. At that time I did not even know what an EP was and they made no mention of an EP or an ICD to me. It was pretty much "you seem to tolerate exercise well, don't feel you need medication,See ya in a year". I never went back there.

    I was introduced to my EP thru Dr. William Abraham who was running the UC heart failure heart transplant here. And the rest is history.

    My ICD was only set to look at the heartbeat #. My ICD has shocked me 6 times because each time my heart would race and I would hit the 188 mark and get shocked. This last time he did change my setting so that it is not going to look at only the "#" but what kind of rhythm it is. He hopes to avoid the shocks that I get because of hitting my 188. The only concern I have is that in a weird way when my heart is pounding and flip flopping and I know the shock is coming I'm glad once it is over because my heart goes back to normal right away. I do not care for the idea of having my heart pound and race and I just sit there waiting for it to slow down(unless of course it is an V-fib and I get therapy right away). He told me if it goes on for more than 10 minutes and I don't receive a therapy I should go to the ER.As much as no one wants a shock, when my heart started acting up I knew in 20 seconds it would be over with. How strange is that way of thinking???

    Anyway, if you could let me know centers near Cincy I would apprecaite it.

    Thanks,

    Julie

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    [Re: Family history of HCM/HCM CENTERS]

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

    Date: 08-19-02 13:25

    Dear Julie

    Drs Lever and Asher at the Cleveland Clinic are some of the foremost HCM specialists in the US. I would give them a try asap. If you read the other threads in this board you will find many happy patients of theirs here.

    Sarah

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    [Re: Family history of HCM/HCM CENTERS]

    Author: Brian Cole (---.server.ntl.com)

    Date: 08-19-02 13:39

    Sarah please could tell me why i am recieving yours and Julie E's emails

    Although very intersting i feel like i an in some way spying for want of a better

    word .I only found this amazing site yesterday so excuse me if this is correct .

    keep well from sunny England

    Brian

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    [Re: Family history of HCM/HCM CENTERS]

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

    Date: 08-19-02 14:10

    Dear Brian

    When you post to the board, there is a box at the bottom of this text box that you can check to have the board e-mail you whenever there is a reply to your post. You must have accidentally checked it when you posted. I don't think you can undo this except to NOT check it in the future when you make other posts. However, this thread should end very soon.

    Sarah

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    [Re: Family history of HCM/HCM CENTERS]

    Author: Brian Cole (---.server.ntl.com)

    Date: 08-19-02 14:14

    Thanks,i think i did tick the box well never mind

    Brian

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    [Re: Family history of HCM/HCM CENTERS]

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

    Date: 08-19-02 15:43

    Dear Brian

    I loooove that the British "tick" boxes and Americans "check" them.

    S

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    [Re: Family history of HCM/HCM CENTERS]

    Author: Brian Cole (---.server.ntl.com)

    Date: 08-19-02 16:31

    It must be our stiff upper lip and all that jazz eheheheheh

    Brian

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    [Re: Family history of HCM/HCM CENTERS]

    Author: Julie E (---.proxy.aol.com)

    Date: 08-20-02 22:40

    Thanks for the names at Cleveland.

    Julie
    NOTE: This is a post from the previous forum message board.
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