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  • HCM death - genetics?

    [HCM death - genetics?]

    Author: Kelly (---.dsl.chcgil.ameritech.net)

    Date: 08-09-02 10:08

    Since my brother's unexpected and sudden death on July 27, I have been reading this site and trying to get as much info on HCM as possible. We have been so shocked and sad to lose our brother - he was 41 and has a 6 and 7 year old. My brother really played his HCM down and continually told us that it was treatable and it was fine...he was on atenelol (sp) and taking care of himself. He mentioned casually we should all (just siblings) should have echos every 5 years or so. I know now that he was seeing specialist at first at the Mpls. Heart Institute and then Mayo. We were satisfied for some reason at the time that all was ok.

    We are not aware of any other heart disease in our family and were not aware of how genetic HCM is. I have read in many emails that there is a 50 /50 chance of the kids to have HCM. Is this true of just my brothers children? Do statistics show this to be the case with siblings and his siblings children? His nieces and nephews range from 4 - 28 yrs old and none of them have had echo's. 4 of the other siblings have had an echo. Is that the only thing we can do for the kids? I wish I had known more about this before.

    Thank you Lisa and Sarah for all of your time and help in responding. Lisa, we have spoken about specialist in my area and you are already sending for Chicago. I appreciate any other information.

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

    [Re: HCM death - genetics?]

    Author: Reenie Smith (---.snbrca.adelphia.net)

    Date: 08-09-02 10:36

    Kelly,

    Yes, all of your brother's nieces and nephews should be tested. Even if his siblings do screen negative for HCM, that doesn't mean they don't carry the gene. It is possible, but not probable, that you can carry the gene and pass it on while not expressing it yourself. Even the adults should have echos done every 5 years. I understand that doctors are just learning more about HCM that isn't detected until adulthood, even 50's and 60's for some people. And these are people who have been screened before. So you can see how very important it is to have the echos done, since that is the only definitive way to know for sure whether or not you have HCM. HOWEVER, you should ideally be screened by a specialist. Many cardiologists are wonderful doctors, but don't have the experience in HCM to treat it.

    Since your brother died of sudden death, it all the more important to know exactly what's going on with each blood member of the family. Have your parents been screened? It a very high likelihood that one of them has HCM also. Among lots of other risk factors that help determine treatment, if anyone is diagnosed, the fact that your brother died a sudden death at an early age will be key information to give your specialist.

    I feel like I've just rambled all over here, but I hope I have given you some helpful information. I am sure you will get lots of other info from others who know lots more than I do. Please make sure everyone in your family knows how serious this CAN be. Also know that if it is diagnosed, it ISN'T a death sentence. With proper treatment, many people live beyond normal life expectancy. I think age 73 is average US life expectancy. Good luck!

    Reenie

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    [Re: HCM death - genetics?]

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

    Date: 08-09-02 12:32

    Dear Kelly

    It is extremely, extremely rare for HCM to pop up by itself, so Reenie (HI, Reenie--I'm e-mailing you soon!) is correct that one of your parents probably has it. In which case, all of you siblings are at risk, as are your kids. While the statistics are on the side of having it show up in the teens and 20s, especially if that is the family pattern, it is still better to be safe than sorry and get every adult tested every 5 years and insurance will cover it as long as the doctor is on board (which he should be since you will be seeing HCM specialists---right???) (and I say "he" only b/c I only know 1 female electrophysiologist out of the dozens and dozens I'm familiar with.)

    So, yes, nieces and nephews need to be tested every 12-18 months till full grown since HCM usually shows up in the early years (but, as we said, not always). While it is also very, very unusual for HCM to "hide" in a generation but be "expressed" in the next, it is possible. ANd since sudden death is now a family risk factor, assume the best but plan for the worst. Implantable defibrillators (should they be warranted) save lives.

    I have seen the people at Mayo and met some of the Minneapolis guys and I have been impressed with them all. You should be talking to your brother's doctors about your brother and about your family and getting anyone who tests positive out there for an evaluation.

    and keep us posted --we are all thinking of you and your family,

    Sarah

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

    [Re: HCM death - genetics?]

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

    Date: 08-09-02 14:53

    KELLY,

    Sarah and Reenie have give WONDERFUL answers (I am impressed!) You should screen all the kids, as if HCM did skip a generation (meaning you or your siblings) your children may still have it. I am not aware of any cases of it skipping two generation - should that change I will let you ALL know.

    My thoughts are with your family, I know it is hard now. Please know you are doing a wonderful job for your family with all the research you and your sister(in law?) have done.

    Best wishes,

    Lisa

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

    [Re: HCM death - genetics?]

    Author: Kelly (---.dsl.chcgil.ameritech.net)

    Date: 08-09-02 16:41

    Thank you all for your information. Lisa, I did forward this site to all my brothers and sisters but did not know one of them was also in touch with you... I am glad. My two kids, 4 and 5 are scheduled for their echos on Aug 21st - a pediactric cardiologist at the childrens hospital in chicago will read the echos - is the technician who does the test the critical one? Since they are so young does the specific doctor they see now need to be an HCM specialist? Thanks for you help. Kelly

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

    [Re: HCM death - genetics?]

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

    Date: 08-10-02 04:14

    Dear Kelly

    Hey, where are you? I'm in Oak Park, IL. I spent A LOT of time at Children's Memorial and they are very good over there. They should be able to recognize HCM just fine.

    The echo tech is important in that they have to measure very carefully, but I have found them to be very exacting, especially since they are dealing with kids. You will be in the room with the kids during the echo (or you can be --I recommend it) and if you have any doubts about the tech, let the doctor know.) By the way, it is against the rules for the tech to tell you anything specific as they are not doctors and they can be wrong, so don't jump on her when she clams up. The doctors read the echos very carefully and you should get a copy of it.

    As for seeing an HCM specialist now, well, I think that if everything looks totally free and clear, it isn't urgent but if anything looks iffy, then yes, see a specialist. I'm torn on this one b/c of the family history, actually. But if anyone gets a positive HCM echo--don't wait around, go straight to the big guns.

    When is your echo?

    PS Thanks, Lisa, for being impressed.

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

    [Re: HCM death - genetics?]

    Author: Kelly (---.dsl.chcgil.ameritech.net)

    Date: 08-10-02 11:12

    Dear Sarah,

    Thank you for you response. I am in Wilmette, IL. We just moved here.

    I have Pediatricians affiliated with Children's here in the north shore. Also asthma specialist for my son from Children's. I am going to Evanston Northwestern for the echo's to be done as my doctor's office said it would be read through Childrens so I did not need to actually GO to Children's to have them read it...does that make sense? Please let me know if you think I should change that?

    Where is your HCM specialist? I had an echo in PA May 2001(normal) but plan to retest with a specialist as soon as I locate one here. Lisa has my number if you would like to call, otherwise I am reading these several times a day right now. I am very grateful to have found this site with so many knowledgeable people. Thank you for your time. Kelly

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

    [Re: HCM death - genetics?]

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

    Date: 08-10-02 11:19

    Dear Kelly

    I'm going to respond through e-mail on this one and anyone who wants the skinny on Chicago-area cardiologists/electrophysiologists can e-mail me directly.

    S

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

    [Re: HCM death - genetics?]

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

    Date: 08-10-02 13:49

    RE an expert to screen the children. No I do not think you need to run around the country simply for an echo. You MUST tell the TECH and Dr. that you have a family history of HCM. It is a good idea to ask for a copy of the echo report for your files, regardless of outcome.

    Lisa

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

    [Re: HCM death - genetics?]

    Author: Julie Downs (---.ips.PaulBunyan.net)

    Date: 08-11-02 16:59

    'm the sister-in-law of Kelly. The web sight has been extremely helpful to me. I am waiting for Dr. Maron's office at the Minneapolis Heart Institute to call me on Monday with an appointment time for my husband. (Kelly's brother) I am so impressed with you Lisa, you must be one great person! Pray for our family, that as they are tested,we will have good news. Julie

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

    [Re: HCM death - genetics?]

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

    Date: 08-11-02 20:13

    Dear Julie

    Lisa is, in fact, a great person and thank you for posting to let us know how you are and where you are in the process. Good luck to all of you,

    Sarah

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

    [Re: HCM death - genetics?]

    Author: Julie Downs (---.ips.PaulBunyan.net)

    Date: 08-13-02 21:57

    Dear Sarah and/or Lisa,

    I feel like I know you two by just reading all of these e-mails. I first want to tell you that I was in touch with Kelly's mother's doctor. He also happens to be her dad's dr., my husband's dr.(Kelly's brother), and my dr. He went back to her records and all was well in 1994. 2 years ago this Nov. she had a heart attack. Now that he went back to see this last echo, he said that he saw some hypertrophic characteristics. I should mention that she has dimentia and lives in a nursing home. He is more than happy to order another echo, but I'm unsure if they can actually read this correctly.(Being nothing was said to the family when this heart attack took place.) My husband does have an appointment on Tues. Oct 1, to be tested.Do you think that if we brought the records of her echo with us that Dr. Maron would be willing to read this. I think that I will call tomorrrow and talk with Sue Casey, his receptionist. Also do you think that we should get brother Dick's medical records for the Dr. to look at? I can also ask Sue. Just looking for your opinion. Also my daughter Angie has called your ofice to have you help her find a pediatric cardiologist in our area for our three little grandaughters to be tested. Now this weekend we need to explain to our 24 year old son how important it is to be tested by a cardiologist that specializes in hypertrophic disease. He just became a new daddy so his child will also need to be tested. He lives in the Mpls. area so not a problem for him to see Dr. Maron, but any ideas on a pediatric cardiologist for the new baby? Thank you so much for all of your help and hi to Kelly! Julie

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

    [Re: HCM death - genetics?]

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

    Date: 08-14-02 14:32

    Julie,

    Hello - Regarding the records on the rest of your family...I would bring anything you have to Dr. Maron.

    I would talk to Dr. Marons Nurse, Sue Casey, she can give you advise on the baby and where you should go for the purpose of screening.

    i will be calling your family shortly...still trying to catch up on emails and message board!

    Lisa

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

    [Re: HCM death - genetics?]

    Author: Julie Downs (---.ips.PaulBunyan.net)

    Date: 11-13-02 02:30

    Hi! Just an update on my husband, Tom. We went to see Dr. Maron at the Mpls. Heart Institute to find out if he had Hypertrophic cardiomyopathy.We have great news! All is well for now! He will be tested again in 5 years. Thank you for all of the help.
    NOTE: This is a post from the previous forum message board.

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