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    Author: DEBBIE L (---.proxy.aol.com)

    Date: 06-26-02 19:52

    My father was diagnosis at the age of 38 while he was in the military with IHSS

    His doctors then and all the years since(he is 60 now) have never told him his conditon was heriditary. He has been seeing VA doctors since retiring from the military.MY father was suffering from severe chest pains 2 months ago and went to the hospital. They said he had a mild heart attack. That is when he saw a cardiologist that we were informed of his condition being heritary. There are 4 of kids with children of our own. We have all been debated about if we should be tested and also have our children tested. I have good insurance but I do know something like this can be costly if I am tested along with my children. All of kids are in our 30"s, so we are approaching the age our father was when he was diagnosis. I have been thinking about this some but it was not until today when my 13 year old son was saying his chest was hurting and that sometimes his chest hurts for no known reason. He also complains of headaches that is hard to cure with over the counter medication.We live in a small town but we do live within 1 1/2 of Atlanta and 1hr of Chattanooga TN. Could you please advise me on what I might need to do. I have never told my children that they could get their grandfathers conditon. Also my fathers cardiologist was interested when he found out that he had identical twins(I am one of them) Would there be a connection to HCM and twins? Any advice you can help me with would be greatly appreciated.



    Author: Marta DeSpirito (---.rasserver.net)

    Date: 06-26-02 20:48

    I'm sorry about your fathers condition I hope he feels better. In a nut shell, anytime any doctor even suggests that a heart condition appears to be heritary you should get tested including your kids. Especially when you have good insurance, that's what it's for. My husband has HCM with obstruction and we have a 4 year old child who' s been tested once. When questions arised about why he was having all of these tests done we basically stated that we all get a physical once in a while to make sure that everything is working and growing correctly. How you approach this with your kids is up to you. But I would definetly have everyone tested.

    Small example......My sister has her three boys tested EVERY year for full physicals. My one nephew (9 years old) would on occassion complain that he would feel his heart racing even when he wasn't doing any physical activity. They did an Echo, Ekg and some blood work (blood work results are still unknown at this time) and determined that he has SVT (Superventrical tachardia ... I think this is the proper spelling). He will be treated for now with low dose of betablocker and will probably live a healty norman life. My point......if my sister did not do yearly physicals and this wasn't undetected until he was much older it has potential to get worse when untreaded. My husband got HCM from his mom who lived to be in her 70's, my husband is 41. Get tested. I'm sure you will get more responses from others that will also help you (Lisa and Sarah feel free to jump in anytime)

    Good luck and keep us posted as to how you make out.




    Author: Bel (---.excel.net)

    Date: 06-26-02 23:18

    I'm in a similar situation and Sarah recommended that I get health and life insurance FIRST, then get tested. Good Luck to you.



    Author: Shannon Santagate (---.galileo.com)

    Date: 06-27-02 11:36

    Hi Debbie.

    This is just a little example of heredity:

    My father had HCM. He had 4 children. 3 of the four have HCM. My sister with HCM had two daughters. One has it and one does not. My brother with HCM has one son who is 10 and was just diagnosed with HCM a few months ago. I have one son who's 3 and he shows no signs of it yet. But it usually doesn't show up until puberty. My brother who does not have HCM has no children yet.

    Everyone in your family really should be tested! It is one of those situations where you really don't want to know, but it is SO much better if you do!

    Good luck and take care.




    Author: Lisa Salberg (208.47.172.---)

    Date: 06-27-02 12:52

    The reason for securing insurance first is NOT because someone is going to die. It is simply a matter of finance, your rate will be lower if you have not yet been diagnosised with a medical problem. You can purchase low cost life insurance for your children and this will ensure that they will have some level of coverage later in life, you can normally get $10,000 to 50,000 coverage for kids a a very low rate.

    Some of these plans will allow you to increase the amount without a medical later in life, so you have to shop for a good policy.

    Re Health Insurance if you have a group plan - even if your "job jump" you should be OK because you will either have COBRA and/or if you go from group coverage to group coverage you will not have preexsisting condition clauses that will stop your treatment - this due to the Health Insurance Portability Act -


    Ya know I think I need a hobby guys... between HCM and Human resource stuff my head is filled with too many facts, stats, and LAWS!

    All the best!




    Author: Board Moderator--Sarah Beckley (---.dsl.mindspring.com)

    Date: 06-27-02 13:39

    Please get your family tested. HCM is not a death sentance, it is something that needs to be uncovered and treated accordingly.

    The HCMA is a great resource and I recommend calling Lisa if you have questions you feel are too personal for the board, but we are all here for you and your family.

    In addition, you may want to read the rest of this board as there are lots of threads about family and testing and kids.

    take care




    Author: Schrece Davillier (---.proxy.aol.com)

    Date: 06-27-02 15:02

    Hi Debbie,

    PLEASE,PLEASE,PLEASE GET EVERYONE TESTED. It is so important to have

    everyone in your family tested. I lost my oldest sister last year to HCM she did not get a chance to be tested.

    My sisiter died of (sudden death). I have been tested and I get my three boys tested every year. I hope your father is doing well.

    I have decided to be the voice in my family. I have 6 siblings I am always telling them make sure you get tested and have your children. Heart disease run in my mother side of the family all of my great aunts died of heart attacks.(as far as we know)

    When my mother sister died they said it was a heart attack but after my sister died (which it took the medical examiner 3 months to find the cause of her death)

    we found out that my mother sister died of HCM 16 years ago. So we never knew

    my aunt had this disease and it was heriditary. We just found out about HCM one year ago. So i'm saiding this to said please have your family tested and educate them as much as you can. I became a member of HCMA and the newsletter is very educational and helpful. It was a tragic losing our love one. Through her death maybe I can help someone eles. So please get TESTED.

    Best regards to all,




    Author: DEBBIE L (---.proxy.aol.com)

    Date: 06-28-02 20:46

    thank you all for the helpful info you have given me. Now I need some help in how to get the insurance company to pay. I "thought" I had good insurance until I asked them what they pay to have testing done for HCM.(I do not have to deal with insurance companies often, so I am not sure I have gone about this right)

    Any way the lady at the insurance company told me that I have to have something wrong with me and my kids for insurance to pay. I told her the test would determine that for us. I have called my family doctor and I am waiting for a return call. I was going to talk to him about having the testing done and to refer us to a cartiologist, but I need some advice to know how to go about getting insurance to pay for at least some of the procedures. My insurance is a PPO through MEDCOST(if anyone has heard of them)

    You guys have been great with the advice. So if you should have anymore about how to get around insurance policys It would be greatly appriciated.

    Many Thanks, Debbie L.



    Author: Jerry Salzman (---.indy.rr.com)

    Date: 06-28-02 23:56


    All we did was talk to our primary doc during the kids check-up and he gave us a referral for a ped cardiologist who did the echos. I would try this first. Luckily, both my 7 and 5 year old are alright for now.




    Author: Sarah B-Board Moderator (---.proxy.aol.com)

    Date: 06-29-02 02:04

    Dear Debbie

    You are in a PPO, so I wouldn't worry about it too much. For your son --he has been complaining of heart problems, so simply take him to his pediatrician, tell him/her the family history and kids symptoms and he should either order an echo or refer you to a cardiologist. If you want to go straight to a pediatric cardiologist, you can ask the insurance co. for the name of someone in the group. If your son's echo is suggestive of HCM, then you should call the HCMA and get the name of a pediatric HCM specialist to take him to. I would be shocked if the PPO denied any claims in this situation.

    As for yourself, and anyone else without any symptoms, your family history is enough to warrant a test and any decent doctor will back you up on this. Just make the appointment with your primary, but most PPOs let you go straight to a specialist if you need one.

    The HCMA keeps a list of HCM specialists --973-983-7429. good luck.




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

    Date: 06-29-02 12:36

    Hi Debbie,

    Just some information I receive with my 11 year old son as for HCM. I had an echo done on him and checked by our local hospital. They told me it was normal, a couple month later I decided to have him seen by a pediatric doctor. The pedi. reread the echo and found that my son did have Mild HCM.

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