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  • I saw an HCM specialist and . . .

    [I saw an HCM specialist and . . .]

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

    Date: 09-10-02 00:43

    Good evening to all of you--and especially to you, Lisa & Sarah,

    I'm glad to be back after a two-month absence (though I did enjoy my vacation, too!) And I'm here to report that Lisa's right (again!): It's very important to see a cardiologist who has specialized in HCM.

    Here's a synopsis of my story. I was born with a heart murmur--59 years ago. I had no apparent symptoms until 20 years ago when I started developing shortness of breath with exertion. I also developed hypertension which was treated with an ACE-inhibitor. In 1999 I saw a cardiologist for the first time and went through the gamut of tests: treadmill, echo, and an angiogram being the most significant. The result was that I was diagnosed with HCM with an obstruction and placed on Toprol. As the dosage increased, I experienced more symptoms (side effects), but I stayed with it because of all I'd read about HCM and treatment options. This year I started following this message board and paying attention to your experiences. I went to the annual meeting in June and was very impressed with the attendees, the presenters, and the respectful interaction among all. And I decided it was time for me to see a cardiologist who specialized in HCM. I live in southern Arizona; Lisa told me the closest specialist was in Newport Beach (near Los Angeles).

    So I made an appointment for July 23. First I had an echo (with the absolutely most competent technician I have met thus far), then went to another building for my appointment with Dr. Pravin Shah immediately afterwards. He had the video images on his computer instantly. He went over them with me in detail. I then had a TEE (transesophageal echo) the next morning. The result: Dr. Shah is certain that I do not have HCM. My ventricular muscle measures within the normal range with the exception of a small part of my septal wall. That, he says, is related to a genetic structural deviation. I'm now scheduled for a supine bicycle exercise with an echo at the end of this month to find out just what causes my symptoms.

    Dr. Shah is both an expert in HCM and an expert in echocardiography. My treatment will certainly be different because of his expertise. I encourage all of you who have been wondering whether you should seek a second opinion from an expert in this field to "Just do it!"

    Pat

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

    [Re: I saw an HCM specialist and . . .]

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

    Date: 09-10-02 00:48

    Dear Pat,

    Glad to "see" you again!

    I'm so glad you posted your story. Many people are afraid to see a specialist for a variety of reasons. And even if it turns out not to be HCM, even better --really, so now you can get the correct treatment!

    I'm glad you are on the right track and keep us posted on your progress.

    take care

    S

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

    [Re: I saw an HCM specialist and . . .]

    Author: Brie Rodighiero (---.dialup.sndg02.pacbell.net)

    Date: 09-10-02 18:24

    Hi Pat.

    I live in San Diego and have also seen Dr. Shah. he was my third opinion who Lisa also referred me too. He is a great doctor and he's only an hour from me! But sadly he doesn't take me insurance and I'm still making payments from when I saw him in June!

    Because Dr. Shah knows I can't see him regularly, he gave me directions as to what I should have done by my other doctors and what other medication I should be on. Since I've seen him I've had another 30-event monitor and have bumped my medication dosage up and FEEL much BETTER! So I have to agree that seeing a expert is w great idea!

    Anyhow, just wanted to let you know that you are in great hands w/ Dr. Shah and I'm very glad to hear of your outcome.

    Take Care,

    Brie

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

    [Re: I saw an HCM specialist and . . .]

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

    Date: 09-17-02 21:23

    Hi, Sarah! Hi, Brie!

    It took me awhile to get back because my mother's been quite ill & I'm her caregiver. She's better now & it seems life's returning to normal!

    Brie, thanks for sharing your experiences with Dr. Shah. I'm glad to know you're in San Diego & that Dr. Shah is working with your cardiologist there. I expect that he will act as a consultant to my regular cardiologist, too, both because of distance and because of cost. My insurance will pay part of his bill, but not as great a portion as it does with my regular cardiologist who is in San Diego at Scripps--which has a PPO contract with my insurance company.

    Sarah, I've thought about this reluctance to seek a specialist. I hesitated because (1) it "felt" like I'd be insulting my regular cardiologist, (2) I was concerned about the cost, and (3) I didn't think it would be worth the effort. NOW I believe it certainly was worth the effort--even if Dr. Shah had confirmed previous opinions, I would have felt more secure about what is going on in my heart. As to cost, my husband & I decided that getting my symptoms lessened would be worth the cost. And as to my concern about insulting my regular cardiologist? I took him copies of Dr. Shah's reports a couple of weeks ago. He read all five or six pages in front of us, looked at us and said, "That's good news!" Then he said, "You know, Pravin Shah is an internationally-recognized expert." (As if I didn't know--thanks, Lisa!)

    Several months ago I read a posting here from Lisa in which she commented that these doctors are "big boys" and they can certainly cope with our seeking second opinions. You're right, Lisa, if they're competent, they probably won't get caught up in professional jealousies. I believe this will now help me develop an even better relationship with my regular cardiologist.

    Pat

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

    [Re: I saw an HCM specialist and . . .]

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

    Date: 09-18-02 00:47

    Dear Pat,

    HOOOORAYYY!!!!!!!!!!!!!!!!!!!! Happy dance!!! This is why I'm here!!!

    thanks,

    Sarah

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

    [Re: I saw an HCM specialist and . . .]

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

    Date: 09-18-02 13:20

    Pat -

    I am glad your vacation went well and I thank you for posting your story for all to see. Thanks for the kind words and I again am so happy that you now have the information you need to help youlive you life to the fullest...HOWEVER...

    Just because you do not have HCM I hope you do not stop visiting with us here! Please stick around we would miss you!

    Best wishes,

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

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