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A thought regarding doctors, good and bad (long)

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  • A thought regarding doctors, good and bad (long)

    [A thought regarding doctors, good and bad (long)]

    Author: TM (---.eosinc.com)

    Date: 11-24-02 12:04

    I've been diagnosed now for a little over a year and I'm thankful because, so far I'm one of the lucky HCM patients who has changed his lifestyle but otherwise has very few symptoms of this disease. I do research online. I read this message board frequently. And I stay in communication with my HCM specialist through the year between visits.

    Here's my issue: The first cardiologist I saw when I was having strange symptoms told me he thought I may be developing HCM. He then told me to go live my life and do whatever I wanted for 4+ years and come back to see him at that time. To me, this is poor advice to give to a patient who plays competitive sports, sometimes in tournaments that last all day. I think this advice was putting me at risk. Aside from this, I was not treated properly (in my opinion) so I found a great HCM specialist and am now quite happy.

    I read so many posts on this board from patients who were mistreated or misdiagnosed by their cardiologist - stories similar to mine. We all end up seeing a HCM specialist and talk about how thankful we are and that seems to be the end of the story. But, it shouldn't be.

    The same cardiologist who gave me the "off" advice is arguably the brightest cardiologist in the area. But he may be no more educated on HCM risks, treatment and monitoring. He does not know I'm seeing a specialist. He does not know that my disease has progressed significantly since I was under his care. How many of you are like me? And what good are we doing for the future treatment and awareness of this disease if we don't educate these docs we once saw? Lately I have felt like I'm doing a great disservice by not writing a letter or buying a copy of the HCM book to send to him or something.

    Do you see what I mean? We're taking care of ourselves, but are we filling in the holes along the way as we see them? None of us want to see another life lost to this disease. But just as surely as we have these doctors out there who are not educated enough on our disease, there will be loss.

    So, now that your eyes hurt from reading this lengthy post, I post this question. What can we do? What should we do?

    God bless, everyone. And have a wonderful, relaxing Thanksgiving holiday. Take time to savor the moment. It's a beautiful day.

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    [Re: A thought regarding doctors, good and bad (long)]

    Author: Mary S. (---.net297.fl.sprint-hsd.net)

    Date: 11-24-02 13:31

    My thoughts exactly! Lisa and I had a discussion on that very topic yesterday! Unfortunatly my ex-cardiologist was not wanting to hear anything other than her own opinion. So my case is getting to the point of taking it to the liscensing board hopefully that will get her attention. Otherwise it seems that one mistake is not enough they have to have quite a few complaints I guess. I am doing more research on it as I have time between school and work. You are definatly not alone on this feeling!

    Mary S.

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    [Re: A thought regarding doctors, good and bad (long)]

    Author: Linda, Bd of Directors (---.wmnsmd.adelphia.net)

    Date: 11-24-02 13:54

    Unfortunately, this is not a new story, but you expressed an idea worth pursuing. Let's have some ideas from others on the best approach. Suggestions? Linda

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    [Re: A thought regarding doctors, good and bad (long)]

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

    Date: 11-24-02 14:47

    I will offer some ideas, suggestions and thoughts.

    1. Here at the HCMA one of our goals is to help educated the medical community by attending the AHA, ACC and NASPE meetings. This is a direct line of communication from us to the medical community...however they still need to stop by and see us!

    2. If you feel you have been mistreated by any medical professional you do have roads to take to change things. Your options vary based on state and country. In most States you can write to the Med. Lic. board and point by point explain how the "standard of care" was not met. If your doctor works in a hospital setting you many want to write to the Chief of Cardiology and explain the situation. Of course you alway have the law to use, but face it that is long, stressfull and unless you can PROVE damages...well it is a lot of smoke (and yes your doc goes through ****) but what have you gained? HOWEVER if you or a loved one has been injured seek professional advice.

    3.I do think a very effective means of getting your point across, albeit not the easiest one, is to return to your doctor after you have had your evaluation by a specialist. Bring as much QUALITY INFORMATION as you can (the HCMA's packet is great...printouts of web pages do not hold as much weight). Sit and TALK to him/her. Even if you do not want to have this person follow your care in the future..the next guy down the line will be glad the doc know about HCM.

    Well there are some thoughts...let me know what you all think!

    Lisa

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    [Re: A thought regarding doctors, good and bad (long)]

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

    Date: 11-24-02 16:13

    Hey ya,ll,

    You know we can catch more bees with honey. I also had a cardiologist who

    knew very little about HOCM and as my systems progressed and what I thought was his lack of concern turned out to be lack knowledge. So I point blank told him I was going to a speciality center, he said he would respect any decision I made. So I did and to make a long story short, I spent a week in the hospital came home with all my papers, scheduled a follow up appt. with him a week later. When he entered the room I handed him the reports and said check this out! After reveiwing the papers he looked at me and said he was sorry and asked if he could learn about HOCM along with me. I smiled at him and together we start this journey But only with the help provided by all the other doctors at MUSC. So perhaps this might be a way to go or in this situation it worked. Thanks , Janis

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    [Re: A thought regarding doctors, good and bad (long)]

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

    Date: 11-24-02 16:43

    HI

    A good doctor (in my book) is one who understands that they don't know everything and they welcome education and opportunities to learn and they listen to you and value your feelings and input on your medical care.

    If you have a doctor who doesn't know HCM, which is almost all of us, send his or her contact info to Lisa so the HCMA can send them a packet. It doesn't have your name on it--unless you want it to. This is a great way to open a dialogue with them about HCM and the most current research findings and treatment guidelines.

    If your doctor is not excited about learning more, then that is someone who needs to be fired or if they are negligent -then reported.

    my two cents

    S

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    [Re: A thought regarding doctors, good and bad (long)]

    Author: Lynn Perry (---.pica.army.mil)

    Date: 11-25-02 03:04

    Part of the problem with some doctors is the fear of legal actions by patients. Thus, they are afraid to admit that they don't know something or that they may have made a mistake in treatment. The approach to openning their eyes to HCM has to be non-threating. Take a lesson from what Janis did. I think her approach was great. Both she and the doctor benefited from the exchange of information.

    Buy a copy of the HCMA book and send it to you doctor with a friendly note like "Doctor, I found this book so educational that I thought you might want to share it with your other patients." Thus, you are not telling the doctors that THEY need to read the book, but any good doctor will read it. They may never admit to you that you helped educate them, but you will have.

    Something to think about,

    Lynn

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    [Re: A thought regarding doctors, good and bad (long)]

    Author: faith (---.214.125.195.Dial1.Boston1.Level3.net)

    Date: 11-25-02 04:15

    Yes to Lynn, Janis, and Part 3 Lisa. Is there a packet we can send to doctors we have found need their consciousnesses raised? How do we get it? Could it go directly from HCMA? I think our names need to be on the communications. Anonymous is cowardly and much less likely to be read/noticed by a doctor.

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    [Re: A thought regarding doctors, good and bad (long)]

    Author: beth (---.nyc.rr.com)

    Date: 11-25-02 06:02

    I am a marketing communications professional and while it may seem odd to think about this issue from that perspective, in fact, the principles of what I do for a living most definitely apply here.

    Given that your target audience, cardiologists, is an easily identifiable target, I would strongly recommend a direct marketing campaign.

    I would recommend the "creative" --- the information sent to the cardiologists --- be penned/ghost written for a professional to sign --- e.g., one of your medical board directors if not all of them. And it is important that any and all communications have some call to action --- response mechanism --- so that you can track your effectiveness/reach and maintain a dialogue with them in the future.

    perhaps, you could raise the money for an effort like this --- one piece or multiple --- with a sponsor of one or some of the companies that creates medical technology for diagnosis and/or treatment of this disease.

    this is what i would recommend, in addition to attendance at events as already being handled, to further your goals of educating the cardiology community. in fact, tieing in the direct marketing to the events would make a lot of sense --- integrating your efforts.

    again, this is a highly targetable audience and if you can raise some money to support a direct marketing effort, a lot can be done with communications to begin to address this issue.

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

    [Re: A thought regarding doctors, good and bad (long)]

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

    Date: 11-25-02 06:21

    Yes, there is a doctor packet that the HCMA sends to doctors --at their request, at your request, etc. Just call or e-mail the office with the mailing address (and name) it should go to. I only mentioned that it can be anonymous since some people may be uncomfortable giving info to their doctor.

    S

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    [Re: A thought regarding doctors, good and bad (long)]

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

    Date: 11-25-02 07:21

    Dear Beth,

    Lisa is working with a PR firm and have created a public awareness campaign for HCM---we just don't have the money to roll it out ---yet.

    S

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    [Re: A thought regarding doctors, good and bad (long)]

    Author: beth (---.nyc.rr.com)

    Date: 11-25-02 09:55

    understood.

    pr is different, however, than a targeted direct effort at cardiologists.

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

    [Re: A thought regarding doctors, good and bad (long)]

    Author: Linda, Bd of Directors (---.wmnsmd.adelphia.net)

    Date: 11-25-02 12:43

    Beth, Lisa always welcomes input and I'm sure the wheels are already turning from your suggestions. Give her time, and she'll get there. I know she will welcome assistance you may be able to give to achieve both targeting and public awareness. Linda

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    [Re: A thought regarding doctors, good and bad (long)]

    Author: harold (---.158.51.217.Dial1.Miami1.Level3.net)

    Date: 12-01-02 19:36

    I have also been diagnosed with hypertrophic cardiomyopathy my cardiologist is not an expert on this subject therefore your letting me know the name of the doctor who is helping you would be greatly appreciated. thank Harold

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    [Re: A thought regarding doctors, good and bad (long)]

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

    Date: 12-01-02 19:41

    Dear Harold,

    Please call the HCMA at 973-983-7429 to get the names of HCM specialists in your area or one who would best meet your needs. We like to talk to people one-on-one before giving out names on the board since there are many factors that go into a recommendation that can't be dealt with properly on a message board.

    Take care,

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

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