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  • How to get tested

    [How to get tested]

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

    Date: 12-28-02 12:30

    I know I've posted here many times but, now I have a question. My husband recently got new insurance for our family. How do I approach my doctor and kids pediatrician about testing us for HCM? They are all new doctorto us.. My brother passed away from undiagnosed HCM 3 months ago. Will they consider it a pre-existing condition? Help! Julie

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    [Re: How to get tested]

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

    Date: 12-28-02 14:11

    Dear Julie,

    The Health Insurance Reform Act of 1996 states that if you have been covered by insurance for the previous 12 months (any kind of health insurance --group, individual, etc), then you CAN'T be denied coverage for any pre-existing condition.

    You do need to check and see (if it is group insurance through work) when it kicks in. Some companies don't start benefits for a month, three months, etc.

    Furthermore, and most importantly, a pre-existing condition is for you, not for your family.

    See the doctor and let them know that you need ECGs and Echos for the whole family and let them know about your brother.

    And call Lisa at 973-983-7429 to get the names of specialists you can go to if anyone comes up positive. ALso, you should be getting an echo every 2-3 years and the kids every year.

    Take care,

    Sarah

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    [Re: How to get tested]

    Author: Amy N. (---.tnt1.seymour.in.da.uu.net)

    Date: 12-29-02 18:01

    Julie,

    When my family doctor told me about my increased septum size, he said my parents and siblings needed to be tested. When I asked about my kids - he said only if a murmur showed up. My son had a murmur at 18 months and guess what - it's hcm. It was only after I got copies of my sons echo and my echo that the connection was made. I realize now, that my kids should have both been checked a year earlier than they were. No matter what the doctor thinks, you need to have the echos. Just remember that doctors have a lot to remember and that the medical field changes day to day. Maybe they'll have the appropraite info and send you to get your echos. I would have some medical based literature that backs up your needing the echos, just to be on the safe side. Hopefully you'll have no problem getting your doctors to set up the echos.

    Good Luck,

    Amy N.

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    [Re: How to get tested]

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

    Date: 12-29-02 18:56

    Please know that most HCMers DON'T have murmurs at all. And ECGs can be normal, too. An echocardiogram is the test you absolutely have to have.

    S

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    [Re: How to get tested]

    Author: doug kittredge (---.nap.wideopenwest.com)

    Date: 12-30-02 04:50

    Part of the HIPAA act of 1996 that was mentioned in another reply is the documentation that is used to avoid problems with pre-existing conditions. Call the insurance company that covered you prior to the curent company. they are required to send you a form that lays out the dates of your coverage with them. As long as the dates of coverage between the old company and the new one don't gap too much, the new company can't deny claims due to pre-existing conditions.

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    [Re: How to get tested]

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

    Date: 12-31-02 04:25

    My bigger question I guess is would this be a pre-exisiting condition since I don't even know if I have anything yet. It was my brother who was undiagnosed with it after his death. Julie

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    [Re: How to get tested]

    Author: Sarah B. Board Moderator (12.144.99.---)

    Date: 12-31-02 06:20

    Dear Julie

    It is only pre-existing if YOU have been diagnosed before you start your new insurance, but from what you described, this is not the case.

    Sarah

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    [Re: How to get tested]

    Author: Julie (---.cinci.rr.com)

    Date: 12-31-02 17:16

    Julie,

    You may also want to check what your Ins. Co will cover. I ran out and had both my children tested after I was diagnosed and my brother died. Well $3000.00 later my Ins Co denied payment stating it does not pay for tests due to family history, but if they were having symptoms it would????? I fought a tough battle with them for 9 months explaining that many times the first symptom was sudden death and obviously that would be a little too late and not acceptable!! They finally paid, but we also were leaving that company and I wonder if that was part of their decision..or they were tired of listening to me.My kids doc told me not to let up on them so I kept at them for months not taking quite a few denials! At any rate I obviously would test my kids regarless of Ins payment or not, just wanted you to be aware so you are not as shocked and furious as I was. Luckily our new Ins Co. will pay for my kids testing.

    Julie E.

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    [Re: How to get tested]

    Author: Jason (---.ushwy1.com)

    Date: 01-01-03 19:41

    Hello, sara are you saying most hcmr's dont have murmur's because they are not actually a murmur. Thats how I was diagonsed. A surgen heard a murmur in a pre op exam for a gall bladder surgery. My life has never been the same. I guess you could say it that way, since it's not really a murmur, but the back splash of blood from the heart. In any case most regular docs. are gonna think you have a murmur. It sounds like a murmur, but its not. If a doc. says he hears a murmur, you better go let some one listen to it that knows. The echo will then show the splash.

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    [Re: How to get tested]

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

    Date: 01-02-03 04:55

    OK a few items here.

    Murmurs are irregular sounds of the heart. For those with obstuction (about 25-30%) you will hear a clear murmur. For those with out obstruction a murmur is rarely ever heard as they have normal heart sounds in nearly all cases.

    RE HIPAA - you are refereing to the health insurance portability act of 1996 (which was not effecive until about 1 year later if memory serves me correctly - July 1, 97 I think) This is for group plans ONLY and you can not have gaps in coverage of 63 or more days and must move from GROUP plan to GROUP plan individual plans do not count (careful there!). If your gap is less no pre exsisting condition can be held against you ( and pregnancy is no longer a preex. condition..funny but true!)

    Ok step 2 what is a pre exisiting conditon - most plans define it a something you have received treatment for within the past 6 months... a simple cold would not be preex. as the cause of the cold of 6 months ago was not the same as your current condition.

    In terms of HCM if you had been diagnosed and were non symptomatic lets say 8 months ago and NOW are having symptoms it would be difficult for the ins. provider to turn down the claim and if they do you appeal it and it will likely be over turned. A diagnosis alone does not create a preex condition as you have not incured claims because of it. Example - You have a divated septum of the nose - you have never received treatment but it is there...now you need a procedure to repair it... not preex. However if you had a procedure 4 months ago and want to have it redone ... then that is a preex conditon.

    Now in the case of screenings... this is very tricky and you must watch you policy language very carefully.... The screening may be viewed a preventitive care and then you may only have a set dollar amount of benefits to use.

    Here is the simple truth... the symptoms of HCM are so vague an so varied that it is very common for people without HCM to have symptoms that May be HCM - example - lightheadedness - palpitations - chest pain - shortness of breath anyone I know with or without HCM has had these symptoms at one point in thier life...including children have had these symptoms....

    So I would say that should a family have HCM in it ... it is likely that the screenings should be covered based on the overwhelming possibility that the patient has had one or more symptoms of HCM and has a family history...

    The key here is that you must inform the doctor of any symptom and the family history and that will help to prove to the ins. comapny that this is a needed test and not a waste of there funds. I have dealt with Ins. carriers for over 15 years cost containment is very important to them as it is how they stay in business...they are not the bad guys (ok maybe a few of them ! but most are good!) If they see a clear path from symptoms to testing then it is easy to justify the funds...otherwise it does look like an unneeded test. Someday we will get the legistlation need to cover screenings..until then talking to the doc and explaining all symptoms - regardless how rare and the family history is the best way to ensure your insureance will cover the testing.

    And if they do not...use it as a tax write off..but do get screened!

    OK I know I gave far too much detail on that posting...but thats my take.

    Lisa

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    [Re: How to get tested]

    Author: Sarah B. Board Moderator (12.144.99.---)

    Date: 01-02-03 07:13

    Dear Jason,

    Lisa explains the murmur situation well (and, of course, the insurance one), but I wanted to address your murmur question.

    When you say "it's not really a murmur, but the back splash of blood from the heart." ---that is the definition of a murmur --blood sloshing the wrong way. It can be wrong many different ways, but that is all a murmur is. The sound of a perfect heart beat is always the same, including the blood flow sound. Any deviation is going to cause a murmur. Some are loud, some are soft, some you hear better under stress or val salva (bearing down).

    Just having a thick wall, however, won't cause a murmur as long as the blood flow can get around and gets out normally (or close to it). When the flow is blocked by obstruction it means the mitral valve is catching and you can have the back splash you talked about.

    Hope this clears it up.

    S

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    [Re: How to get tested]

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

    Date: 01-02-03 08:10

    Sarah,

    I'm not sure exactly what happens with my husband's heart, but his hypertrophy is mid-septal with no obstruction and his diagnosis began with a murmur too. His hypertrophy is quite large. Maybe that made for turbulent flow?

    Reenie

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    [Re: How to get tested]

    Author: Sarah B. Board Moderator (12.144.99.---)

    Date: 01-02-03 08:35

    R

    Yes, if the hypertrophy is large enough, it can disrupt the flow but be lower down so it is not catching the mitral valve. I'm not obstructed and I have a small murmur, too.

    S

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    [Re: How to get tested]

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

    Date: 01-02-03 09:35

    Thanks Sarah!

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    [Re: How to get tested]

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

    Date: 01-02-03 11:05

    Thank You Lisa and Sarah for all of your well informed info. It makes it so much easier for me to have my own information with me when I go to the dostors. Thanks Again! Julie

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    [Re: How to get tested]

    Author: Jason (---.ushwy1.com)

    Date: 01-02-03 18:29

    Thanks for clearing up that murmur thing. Is it bad if your valve is catching? Like is that worse for you than others you described? Mine catches, traping the blood, well actually the way it was described to me, is not having enough room for the proper blood flow. Some of my blood gets "caught" and pinched off sending it back to my lungs. Thank you. Good luck on that insurance thing.

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    [Re: How to get tested]

    Author: Sarah B. Board Moderator (12.144.99.---)

    Date: 01-03-03 05:55

    Dear Jason,

    It depends. What is your septal measurement? Is that what his causing the mitral valve regurgitation? Some obstruction is mild and some mitral valve prolapse is mild, but both can get bad. You can't say one is worse than the other because they both have a range of function (or mis-function, as it were).

    Sorry for my non-answer, but HCM is very specific---specific to the individual, that is.

    Take care and see a specialist.

    S

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    [Re: How to get tested]

    Author: Jason (---.ushwy1.com)

    Date: 01-04-03 11:15

    Sara, sorry it took so long to respond . I just loaded XP & lost all my internet stuff. My measurement, I dont know my measurment, my doctor is the one who gave me an incomplete form from my echo. On my next one I will make sure that he does. I'll probaley go to new york like lisa told me to. Thank you any way.
    NOTE: This is a post from the previous forum message board.

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