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  • Referrals

    [Referrals]

    Author: Krista Donnelly (198.76.142.---)

    Date: 10-10-02 15:17

    This is a really basic question, but I have to ask someone so I'll put it out here for you all. How exactly are referrals done? Not for insurance purposes (I'm a in BlueCross/BlueShield point of service program), but to get testing done.

    My situation is this. My 6 week old son died in late June very suddenly. One day he was perfectly normal, the morning I woke up in the morning to find him not breathing. In the intensive care unit, they did an echo and found he did have non-obstructive HCM (septum was .86 cm - "moderate septal hypertrophy" on the echo report). Now, this week we were able to talk with his doctor from the ICU. She (and the pediatric cardiologist who did the echo) discounted the HCM - didn't feel his measurement was enough to have caused the death. She thinks it's more likely to be SIDS (i.e. unexplained death). I'm pretty ambivalent on this point myself - I keep thinking, "if it's so rare in infants, then how could Seamus really have had an arrythmia?" but rare things do have to happen to someone. And SIDS is rare too. Is there any evidence after the fact that can show if an arrythmia occurred (other than just the event of the cardiac arrest)?

    Now, the doctors aren't HCM specialists - didn't even feel myself and my husband should be tested since "you'd be symptomatic by now if you had it." If I hadn't found this wesite first, I wouldn't even have known to give his echo findings a second glance. When I asked about testing for myself and my husband, since HCM is genetic, she basically said to do whatever we needed to get peace of mind (i.e. we don't really need it, but go for it if we want to.) And she and the ped. cardiologist didn't think we should worry at all about future children.

    Now, my husband got an echo from a primary care clinic nearby here (D.C. area) in July since he went to the ER for chest pains. His results were all well within normal, so we feel comfortable with not having the echo repeated by a specialist. But it's another question for me since I have no other reason for an echo except Seamus' findings. I've spoken with Lisa and gotten the name of a specialist near here. But his office says I need to get referred by my primary care doctor. I've mainly only seen my Ob/Gyn practice. There's a family doctor I went to once during my pregnancy for a slightly high white blood cell count. Other than that one visit, he doesn't know me at all. Do I go to him with my son's records and the HCM articles, and ask him to refer me to the specialist and give him the specialist's name? And by referring, does that mean he's going to contact the specialist himself? Or would he give me a letter and I send it to the specialist? I want to do this but I have a very hard time talking about it on the phone without crying and it just seems overwhelming if I don't even know what the proper procedure is to begin with. (We've never had serious health problems before.)

    (And it doesn't help that no one else seems to think this is serious or that it's even likely I need to be tested. And frankly, I'm afraid of the specialist telling me the same thing. When I called his office the first time, the receptionist not only told me about the referral but said "you really don't need to be tested since it usually comes through the father". Discouraging since it's wrong information, but it was just the person answering the phone, not the doctor.)

    Thanks for any help.

    Krista Donnelly

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

    [Re: Referrals]

    Author: Glen (65.247.42.---)

    Date: 10-10-02 15:39

    Hi Krista, you should defineltly get tested and your husband again by an HCM specialist.

    Almost every person who posts on this site has horror stories about doctors, cardiologists included who have said you have nothing to worry about.

    Well here we are and there was something wrong.

    They sound indecisive so don't fool around with them, go see an HCM specialist.

    Start with you GP if he won't you give you a referral then go back to the others.

    Call back to the HCM specialist who told you, you need a referral and ask them how they want it presented, your doctor send a letter, your doctor call them, give you the letter and you call them, in any event don't give up.

    Saying don't worry about future children just shows they are not up to snuff.

    Children have a 50% chance of having HCM if one parent does.

    Good Luck

    Glen

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    [Re: Referrals]

    Author: Amy Williams (---.proxy.aol.com)

    Date: 10-10-02 15:49

    Dear Krista,

    I am so sorry that you lost your baby. As a mother of three, I can't imagine anything worse. I don't know the answer to most of your questions. However, I can tell you that HCM can be picked up in infants. My son was diagnosed with it at 4 months. He was screened because I have it. In my opinion, you should definitly be screened. Not all HCM patients have symptoms. That is why many athletes drop dead suddenly...they didn't know they had HCM. That's the shame, because these deaths could of been prevented. Also, it doesn't usually come through the father. It can come throught the mother or father. This whole male tendancy thing is a myth that I have been hearing quite a bit. I'm not sure where it is coming from, but you would think a receptionist working for a cardiologist would know better.

    If I were you, I would give Lisa a call back in regards to your refferal questions. I'm sure she will be able to help you.

    Best wishes,

    Amy WIlliams

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    [Re: Referrals]

    Author: Pat (---.d00832.dlup.digitaldune.net)

    Date: 10-10-02 16:02

    Krista,

    Call your Blue Cross/Blue Shield provider and ask them how you are required to arrange a referral. They can tell you whether you must be referred by a primary care physician, the pediatrician, or anyone at all.

    When I decided to go to the specialist, I called my insurance provider. They gave me clear & specific information. (In my plan I am allowed to self-refer to any provider. If the provider is out-of-network it costs me more; that's the only difference. So when the specialist asked who had referred me, I said "Lisa Salberg at HCMA." And that was that!)

    Good luck! And do go to see the specialist--both you and your husband. No matter what you find out, you'll feel better for having your questions answered!

    Pat

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

    [Re: Referrals]

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

    Date: 10-10-02 20:00

    Krista,

    First of all I am so sorry that the medical personnel have treated you this way. Let me say that they are flat out wrong about HCM only being passed from the father. No other way to say that. I think that in your shoes I would have myself and my husband *both* examined by an HCM specialist. Even thought your husband has already had an echo, sometimes other doctors don't really know what to look for when reading the echos. And the technicians also don't always do the best job. As far as other children go: only you can decide what to do. But if one of you do carry the gene for HCM, then there is a 50/50 chance of passing the gene to your children. Either you pass it or you don't. Simple as that. Now that being said, even if you pass the gene it may not manifest itself the same way in another child like it did in Seamus. Another child may not have clinical hypertrophy until puberty or later. (Assuming you passed it to both Seamus and another child.) And rarely it can be passed on and that person becomes a carrier and never manifests the condition themselves. But they can still pass it to their offspring if they do carry the gene.

    I don't know the answer to your question about whether or not you can detect arrhythmias after death. But don't let them tell you it isn't significant. At the least it's belittling your feelings and intelligence. Don't let these ignorant people sway you in what you already know you need to do.

    Is there a doctor who you go to when you have a bad cold or something? That is who you should ask for the referral. They will give you a copy and they should also be able to help arrange the referral for you if you ask. This means getting pre-approval from your insurance, I think. You might ultimately be the one who has to call the specialist after the referral is complete and approved.

    I hope some of my rambles have helped you. Let us know if there is anything else we can do.

    Reenie

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

    [Adult onset HCM]

    Author: Erica (---.atlnga1.dsl-verizon.net)

    Date: 10-10-02 20:40

    Since there is a 50/50% chance that the gene can be passed down a child ... I can't help wonder if I will get it later in life!?!?!? So far my echo is normal. My septum weight was 0.8 and normal range is 0.5 - 1.0 and my father's septum weight is 3.0 - 3.5.

    Has anyone been informed with the chances of coming down with signs/symptoms later in life? I can't help but wonder what the chances are of my spetum weight increasing five to ten years from now. I do not think my father had signs when he was my age but he did know that he had a murmur and I have one too (trivial mitral regurgitation.) It wasn't until his mid to late 40's until he started having true tale signs and he was diagnossed with IHSS (?) at 47 years of age. Perhaps he had it all along but wasn't diagnosed until later in life because of the lack of knowledge available.

    Hope everyone is well. You are all in my thoughts and prayers! Be well and smile!

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

    [Re: Adult onset HCM]

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

    Date: 10-11-02 00:13

    Erica, some people don't get diagnosed until later in life, even when they've been routinely followed and screened. You should still be screened every 5 years. Just because your dad's septum is 3 - 3.5 doesn't mean that if you get it yours will be the same. Maybe and maybe not. Just wanted to make sure you know that it varies, even within families.

    For instance, my husband's has been measured at 3.8 - 5.2. (Yes, I know that's a big difference. Nobody has explained that yet.) And yet neither of his parents showed signs on echo within 10 years of his diagnosis. Neither of them will ever have echos again, either. They don't believe in all that testing if it "won't serve any purpose." Now his grandma will be 90 next month. She fell and broke her hip last month. She has been having arrhythmias and when they mentioned my husband's conditin to the doctor, he thinks her condition may be the same, but since she is so old the only real way to check (according to him) would be to do genetic testing. And that isn't feasible to pay all that money for information when her family who won't follow up and have people screened even if it is HCM.

    So apparently my husband is the fluke that started the gene mutation in his family or it might have "skipped" his mom, where she had the gene but never manifested the disease. And my husband has 2 siblings. One has been screened and also screened her child. She will continue follow up screening. The other says he isn't gonna get screened. He doesn't feel bad, so why should he. And he has 3 kids too. Wouldn't ya wanna know?!?! Ok, off my soapbox now. I hope some of this rant and ramble answered some of your questions.

    Reenie

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

    [Re: Adult onset HCM]

    Author: Erica (---.atlnga1.dsl-verizon.net)

    Date: 10-11-02 00:37

    Thanks Reenie! I guess I will just have to be patient and wait! I wonder if genetic testing is covered by insurance or if it’s viewed upon as an “unnecessary test” - especially if one doesn’t harbor any signs. I can still recall vividly the look on my PCP’s face when I told her I wanted to have an echo! She looked at me as though I had three heads and said that she highly doubts I have “it” since I looked/sounded fine! I wish I had this knowledge a few weeks ago … I would have given her a quick crash course on HCM.101 --- Keep in mind that she was well informed of my father’s condition and I even filled her in with my family history! “All you have is a murmur and that is common. Most people have them.” Anyhow, do they have all the genes mapped out or is it still too premature?

    TGIF!

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

    [Re: Adult onset HCM]

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

    Date: 10-11-02 09:48

    The gene/DNA mapping is somewhat in it's infancy. I don't really know a lot about it. You can do a search on this board. There are several threads from a couple of months ago, I think. I think *maybe* they can tell whether or not you have a mutated gene, but there has been about 10 gene mutations that are linked to HCM and some people who have it don't fall into any of the 10 mail slots. Maybe Lisa or Sarah can expound upon this. I am pretty sure that the insurance Co. wouldn't cover that sort of testing. It's not a standard test for HCM. I hope what I've said makes sense. It's really early AM here and I'm having trouble waking up today.

    Reenie

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

    [Re: Adult onset HCM]

    Author: Erica (---.biz.dsl.gtei.net)

    Date: 10-11-02 10:03

    As always, thanks Reenie. I'm having a tough time finding accurate up-to-date information! I guess HCM is still in it's infancy, too, with regard to fully understanding it. Hopefully soon I will receive the book published by the HCMA and the medical world will fully understand it as well. I feel like I have sounded so negative on the board and it's not directed towards this board at all -- you are all wonderful! My uneasiness is from the frustrations of the unknown. Thanks for your reply. I will weed through the message board for other postings and present it to the specialists when I go to the MUSC with my father. Wow ... he will be seen one week from today! Thanks again and have a wonderful weekend.

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

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