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HCM in older people


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  • HCM in older people

    [HCM in older people]

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

    Date: 04-06-02 10:49


    I'm 64 years old and was recently diagnosed with HCM. I had angina and shortness of breath even walking. Now with 50 mg. of beta blocker I feel fine jogging short distances. I've gotten very little information from my doctor so far but will pursue. Does anyone know why HCM would show up late in life? Also, I live very near NIH in Bethesda, MD. It appears that my case is on the mild side. From those who have been to NIH, would I gain anything by going to NIH?

    Thanks, so much!



    [Re: HCM in older people]

    Author: Sarah B. (---.dsl.mindspring.com)

    Date: 04-06-02 22:18

    Dear Jon,

    Welcome to the board and to the HCMA.

    The most recent newsletter of the HCMA tells the story of Lori Flanigan's experience with the NIH. Lori was the sister of HCMA president, Lisa Salberg. Lori's story is tragic and a rather strong indictment of certain doctors at the NIH. However, I believe that there are people who do use the NIH and are very happy with them, too.

    Since you are new to HCMA, I highly recommend e-mailing them your address to join the mailing list ([email protected]). Other resources that the HCMA provides are the newsletter I mentioned, the annual meeting May 31st and June 1st where you can learn more and meet other HCM patients (Morristown, NJ) and general advice, etc. Lisa has written a book on living with HCM that is for sale through the office, too.

    Also, the HCMA can send a packet of info to your doctor and/or they can give you the names of other specialists in your area if you choose.

    I'm very glad the beta-blockers are working for you -we love good news around here.

    take care and keep us posted,



    [Re: HCM in older people]

    Author: Bob (---.dyn.optonline.net)

    Date: 04-07-02 18:03

    Hi Jon,

    It is good news that your case is on the mild side. However, I would not take that to mean that it should not be carefully followed. If your Doc is not an HCM expert, I would recommend that you do consult one, since HCM is a complex disease. Regarding age, my understanding is that it can show up at any time in life. I think sometimes it is overlooked for many years, because most doctors are not experts in either its diagnosis or treatment. In my own case, I had a murmor for many, many years, which was dismisssed by several phscians as "nothing to worry about". Finally, a new primary care physician felt it should be looked into, and after many tests, the diagnosis was HCM. I was 54 at the time. Although I remained symptomless since then (8 years), my obstruction continued to worsen, and recently I had a Pacer-ICD installed. The pacemaker has had dramatic results. So. I am glad that I pursued this diligantly over the years, rather than wait for something bad to possibly happen.

    Good Luck,



    [Re: HCM in older people]

    Author: Sue (---.wmnsmd.adelphia.net)

    Date: 04-07-02 19:22

    Dear Jon, I am glad you seem to be doing so well and having mild symptoms. I would caution you to investigate several HCM specialty centers before choosing one. The HCMA office can provide you with several options. Before you decide to go to the NIH, learn what they have to offer. My family was involved with their HCM program, and I am very much aware that all options for treatment of this very complex condition are not offered at the NIH. Before choosing a course of treatment, you need to be aware of what the options are. My family found this info to be sorely lacking through the NIH. Because they are strictly a research facility, they can offer only what they have available. They are not a "full-service facility". This is info we learned only after we realized we were not receiving the most effective treatment for our situation. Do your homework! Best wishes, Sue


    [Re: HCM in older people]

    Author: Pat-Sub (---.intrepid.net)

    Date: 04-08-02 19:57

    Hi Jon,

    As an ex NIH patient, I strongly second Sue's advise. My son and I were followed there for 12yrs. and did not receive the info we should have. Unfortunately, it took a crises to bring all this to light. Research is the name of their game, not treatment. Find a real HCM specialist. Best wishes.



    [Re: HCM in older people]

    Author: sherry (209.241.5.---)

    Date: 04-09-02 16:20

    Hi Jon, I understand how you feel. I started having symtomes ( rapid heartbeat, heart murmor) at 35 but was not diagnosed untill age forty; I'm fifty today. I have a pacer and I'm ona beta- blocker and a calcium channel blocker and cozaar for congestive heart failure.All of this seems to be working; I can't do every thing I used to do but I'm still able to function. I'm still able to work as a teacher. I think a lot of that is due to a doctor who knows about the desease. My advice to you is to find a cardiologist who knows about HCM.

    Good luck



    [Re: HCM in older people]

    Author: Irwin Spivak (---.dialup.mindspring.com)

    Date: 04-28-02 12:25

    As a 75 year old relatively healthy man, formerly a tennis player, I no longer am able to walk any distance or carry anything of weight without extreme chest pain that requires I stop whatever I'm doing and wait for the pain to stop. This usually takes about 3-5 minutes. Am seriously considering the Mayo Clinic and looking for any info about their facilities and insurance coverages that apply (e.g.: Blue Cross). I've had this pain for about 40 years and it's gotten worse as I aged. Medications have been useless. Any information and suggestions would be much appreciated.
    NOTE: This is a post from the previous forum message board.

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