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  • accurate or inaccurate ... does anyone really know...

    [accurate or inaccurate ... does anyone really know?]

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

    Date: 10-11-02 06:45

    This post is in regard to my reply from Sarah: http://www.hcma-heart.com/messages/r...&i=4523&t=4523

    If the AHA’s information isn't up-to-date ... who is publishing up-to-date, "accurate" information? Bueler? Bueler? Anyone? Does anyone have an answer? This is really frustrating. I am coming across too much disagreement on this condition ... it seems that not one person can agree on meds, procedures, etc ... journals are wrong, articles are outdated --- Everyone disagrees with one another – everyone seems to contradict one another -- doctors, nurses, patients ... Geez!!! I'm sorry but this is ridiculous. I'm finding it real hard to believe that no one knows a darn thing since no one can agree with one another. There is a lot of bias going on and I am not feeling comfortable one bit ... basically, it sounds like you can't believe anything you read, anything you hear, period -- unless it is posted by a select few! Who is right? Patient’s lives (present and future) are at stake! Why is so there so much controversy going on?

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    [Re: accurate or inaccurate ... does anyone really know?]

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

    Date: 10-11-02 06:56

    Sorry ... I needed to vent. I'm just confused. HCM is too complex and perhaps it is still too new in nature for anyone to really know ... and if that is the case then I hope to learn so.

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    [Re: accurate or inaccurate ... does anyone really know?]

    Author: Robert Hartwell (144.195.62.---)

    Date: 10-11-02 11:40

    Erica,

    One thing I have found is that not much is known about the causes of HCM other than the genetics parts. Dr.'s are still learning more and more and there is a lot of information available to all of us thanks to the internet. Some of it old and some recent. I spent a lot of time reading and learning about HCM and HOCM after my diagnosis. I used that information as a basis for discussions with my doctors. From my local cardiologist (who knows only the basics) to my discussions with Dr. Lever at CCF (one of the leading experts) I have been able to eliminate much of the inaccurate information and understand more of what they know about my condition.

    Keep reading, but most of all, talk to the folks on the leading edge.

    Bob Hartwell

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    [Re: accurate or inaccurate ... does anyone really know?]

    Author: Heather I. (65.247.157.---)

    Date: 10-11-02 11:41

    Erica,

    My family has had problems w/ HCM since the early 60's and I have it today in 2003 and I still don't feel like much is known (as far as our family goes)........I'm hoping to be led in the right direction at my upcoming appt. at the Mayo Clinic......Sometimes I feel like I know more than my drs. here do.....( I probably do!! It's easy to get frustrated with all of the controversial info. and 10 different drs./people telling you 10 different things. I think the best thing your dad can do....is find a specialist/dr. that he trusts and feels good with and go with what he says. I still haven't found that and am hoping that changes in the next couple weeks....

    Heather-29, HCM

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    [Re: accurate or inaccurate ... does anyone really know?]

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

    Date: 10-11-02 12:01

    Robert & Heather ... THANK YOU!

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    [Re: accurate or inaccurate ... does anyone really know?]

    Author: Heather I. (65.247.157.---)

    Date: 10-11-02 12:04

    2002........getting a little ahead of myself....... ha, ha.......

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    [Re: accurate or inaccurate ... does anyone really know?]

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

    Date: 10-11-02 13:16

    Erica,

    I agree--it is VERY frustrating to want the most up-to-date information and not know where to find it. Your question is very important. I see SO much information put out by "experts" (on the Web, in books & articles) which is not accurate. The unfortunate human tendency seems to believe anything which is written. It's important to know one's source as you know--and AHA is a generally good source.

    Having some experience in research and publication, I can tell you this: Getting something from research to written form will most often take some two to three years. This has to do with the writing process (in which the researchers get their information in writing), the peer-review process (in which other professionals consider factors which indicate whether the research & its results are valid), and then the publishing process (in which a publishing company translates the report into its written form in a journal article, a book, whatever). Professional organizations like AHA translate the published information--which is already 2 or 3 years old--into formats for the public like brochures or Web pages. This can take months longer. Although lengthy, this is, in my opinion, a very important sequence of events because it produces generally accurate information.

    It's much, much faster for the researchers to talk with each other via the phone, internet, or symposia like the HCM summit which Dr. Maron and other experts convened last week in Minnesota. (That's the one Lisa & Sarah went to.) And they do that all the time. Which is another reason why the theme on this Board of "See a specialist" is so very important. The specialists are talking with each other and following each other's research.

    So the short answer to how to get the most up-to-date information is to ask one of the HCM specialists. Which is another reason to consult a specialist. We also have other sources of up-to-date information in Lisa & Sarah who are privy to much of what the specialists are learning. So when Sarah says something isn't quite up-to-date, I believe her!

    I hope this helps with your frustration,

    Pat

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    [Re: accurate or inaccurate ... does anyone really know?]

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

    Date: 10-11-02 14:35

    Pat ... it does ease my frustrations. Thanks for putting a smile back on my face and helping me to understand from a realistic point of view.

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    [Re: accurate or inaccurate ... does anyone really know?]

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

    Date: 10-11-02 14:44

    Dear Erica,

    Your frustration is shared by all of us at some point during the process of diagnosis and treatment for HCM and HOCM.

    Have you read the rest of this web site's information on HCM? It gives you a hint as to why HCM is what it is.

    First of all, it is only in the last ten to fifteen years that HCM has been identified as such. Previously, there were dozens and dozens of names for thickened septums and thickened walls. Also, echocardiograms were not available until the 80s, so prior to that, there was no way to look at the structure of the heart. Xrays and catherterizations helped a little, but nothing like an echo. Many, many, many people certainly had HCM who were told that they had x, y, or z simply because no one knew any better. But when you don't know the disease exists, you can't research it or compare treatments or develop a deep database of statistics like we have for coronary artery disease.

    For example, I'm 33, my mom is 57 and my grandfather would have been 83 had he lived. When he died at age 37 back in '56, all they knew was that he had a bum ticker and eventually congestive heart failure. In 1970, when my mom's "heart murmur" turned into atrial fibrillation, her doctor said there was nothing wrong with her. It took a med student who lived across the hall from her to say "hey, there is this IHSS thing it could be!" And when I was diagnosed in '83, most of my doctors would ask me what the HCM was "secondary" too --meaning what childhood disease had caused it --not knowing it was a genetic disorder.

    So the lack of a recognized history is big obstacle number 1. Obstacle number 2 is the fact that HCM is a big, long name for what can look like many different diseases. Only 20% of HCM patients have afib, 20% have obstruction and even fewer need ICDs or pacemakers. The reality is that the vast majority of HCM patients live a long life. However, there is a certain percentage that have the strain that is silent and deadly. This is the segment that gets the most press and scares the bejeezus out of everyone, and rightly so. However, it has come to light in the last few years that the stats on sudden death have been skewed by over-reporting. So the number of recognized HCM patients who die suddenly each year is closer to 1% --not anywhere near the 5 or 6 some have reported before.

    The trick is "diagnosed." Student and professional athletes are not required to get echocardiograms. If they were, we would certainly catch a large portion of undedected problems. However, even there, HCM can be missed. THe HCMA is educating the medical community on HCM as well.

    Doctors have tons and tons of information they need to stay on top of. The percpetion is that HCM is obscure and even if it weren't, most doctors still only see 1 or 2 patients with HCM or HOCM in their entire practice, maybe 4 or 5 over a lifetime. I learned last weekend that doctors get 20 minutes of instruction on HCM in medical school.

    The people who post on this board are posting their personal experience with HCM and that literally varies from person to person. Because the range in HCM symptoms can be from zero to needing a transplant, you have a lot of disagreement in how to treat it because clearly, there are so many levels of the disease.

    When you read a post, take into account that not all of it will necessarily be applicable to you, but take the questions raised to your doctor.

    As was pointed out above, medical literature is constantly evolving. What was a popular treatment in the mid-90s has now been mostly discredited, however, it does work in about 10% of the HCM population. They key to reading the literature is to be critical of it, to run it past a specialist and to look at the date. If it is more than a year or two old, it may be out of date. That is just how fast the reasearch in this area is going.

    And yes, the reason why we harp on "see a specialist" so hard and so often is because it is necessary to do so in order to avoid being treated by a doctor who is going by old information. The centers that have the highest concentration of specialists treating HCM and that have the highest success rates for all of the surgeries and procedures are going to be reviewed in the next member newsletter. You will have seen the names here over and over in posts.

    I am the official board moderator in order to welcome each new poster to the board, answer all the questions I can, lead you in the right direction for those I can't, and to point out innaccuracies wherever I find them. Lisa reads the board as extensively as I do, but she is not always able to read it every day. I forward urgernt posts on to her when necessary.

    A major part of the HCMA mission is to promote education and awareness with the general public and with the medical community. The HCMA needs funding to make those dreams come true. If everyone who posts was a member, that would be a great first step in supporting the HCMA's goals. Buying the HCMA's patient's guide to HCM would give you a great pimer on what is known about HCM from a valid source, too --and support the HCMA at the same time. Members also receive the newsletter which gives you the latest research from the "certified" specialists.

    I hope that I've cleared a little mist. We all want --and need--to do a little primal scream therapy from time to time. Time and money and support will get HCM out of the shadows.

    take care,

    Sarah

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    [Re: accurate or inaccurate ... does anyone really know?]

    Author: betsy trawick (168.8.208.---)

    Date: 10-11-02 14:49

    This has been the case for me since I was dianosed in 1989. Too many unknowns - the conditions are so different across the board for so many - kid of like teaching children - there is no one right answer.

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    [Re: accurate or inaccurate ... does anyone really know?]

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

    Date: 10-11-02 15:10

    Sarah ... thank you. I think your response will not just benefit me but will also benefit those who are also feeling frustrated. It all makes sense now. And I knew it, too, deep down ... I just needed to be reminded as I am human ... you know, a little reality check was in order.

    Well, I just became a member this week, I should be getting the book any day now (hopefuly it will be in my mailbox to read over the weekend) and I look forward to receiving the newsletters, etc. To Sarah, Lisa and all of you that are a part of this message board ... THANK YOU.

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

    [Re: accurate or inaccurate ... does anyone really know?]

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

    Date: 10-11-02 15:55

    Dear Erica,

    You are very, very welcome. Glad to have you aboard!

    take care,

    Sarah

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

    [Re: accurate or inaccurate ... does anyone really know?]

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

    Date: 10-14-02 10:08

    RE the original posting - -

    Disagree maybe - but not as much as you think...Confusion...much more of it then you think...

    When dealing with HCM, we are not dealing with 1 set of "rules" as we each have a slightly different expression of the condition it is hard for the docs/medical data to keep it all straight. What works for one may be extremely damaging for the next...this is where the frustration steps in. This is also why I say as often as I do that seeing a doctor that specializes in HCM is the KEY!

    I know this entire topic...HCM... leaves most of us shaking our heads in confusion and frustration....but if you think it is only the patients... your wrong many doctors feel the same way...this is why it is important to be an educated patient and know your own health better then anyone, know your enemy....Know what HCM can and may do... then you can be prepared!

    And through it ALL know the HCMA is here to help make things a little better.

    Best to all,

    Lisa

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

    [Re: accurate or inaccurate ... does anyone really know?]

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

    Date: 10-14-02 10:17

    You do make things better every day with each posting read,submitted, and replied to. Thanks for all you do! Still waiting to receive the book! Hopefully the mailman will deliver it today! I have heard that the material covered in the book will make things clearer and provide a good education on what HCM is all about. Have a good week! ~Erica

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    [Re: accurate or inaccurate ... does anyone really know?]

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

    Date: 10-14-02 12:46

    Erica - -

    I think it is a holiday...no mail today;-(

    But I checked with my husband who mailed it while I was out of town in MN... he mailed it on Oct. 4...so it is very slow in getting to you! it was sent 1st class mail,,,so keep you eyes open it should be there very soon!

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