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Treatment by a doc who knows HCM - the difference!

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Cynaburst Find out more about Cynaburst
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  • Treatment by a doc who knows HCM - the difference!

    I wanted to post what my experience at the doctor was like today to show the difference between my experience with a doctor that I shopped around for who knows about HCM, and the experience that many of you have when you go to the "regular" cardiologist.

    Now, you should know as background that my doctor is the head of the echo lab at a major teaching hospital here in L.A., so he always brings in a cardiology fellow or two to examine me to learn about HCM, and in addition to treating me, he is also interested in teaching new doctors, so he does things not only for my benefit, but also in the interest of teaching.

    The fellow examined me first, then the doctor does the dog and pony show and explains my murmur and what other things can be gleaned from my exam. They do a handheld echo every time he sees me when I don't have a full echo. I have a full echo probably twice a year, and see him twice a year for a follow up with a handheld. Then, he asks me about my symptoms, etc. and then we discuss my progress.

    Then (pay attention, you all with children fighting for screenings!) He asks me about the last time my almost 3 year old son was screened. He was screened in utero by a fetal echo, and when he was 1 year old. He tells me that next time I come in and have an echo in December, I should bring my son, and he will do a brief echo on him just to make sure that all is ok. Now, my son isn't even due for a regular screening for another few years, and even that is optional since they aren't required until adolescence.

    How cool is that? Now, I am sure that there is some scientific learning benefit for the students being able to follow an HCM family, seeing when it presents, etc. But mostly it benefits me. I am so grateful to have found this doctor. I just want to encourage those that haven't found the right doctor to keep looking, because it makes a HUGE difference. Even if your doctor isn't a HCM expert, one that is willing to learn and work with you makes such a big difference.

    Back to work now for me. Just had to share.

    Cynthia
    Daughter of Father with HCM
    Diagnosed with HCM 1999.
    Full term pregnancy - Son born 11/01
    ICD implanted 2/03; generator replaced 2/2005 and 2/2012
    Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

  • #2
    Re: Treatment by a doc who knows HCM - the difference!

    Cynthia,
    You are very blessed to have this experience to share with others. We are all learning about HCM, and some of us are the "teachers" for the non-HCM doctors, nurses, community people, family members, and friends. It would be great for us to have more stories about our "good" HCM experiences...until then we can dream!

    Sharon

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    • #3
      Re: Treatment by a doc who knows HCM - the difference!

      YOU MADE MY DAY!

      What a great story - we need more like that!

      Lisa
      Knowledge is power ... Stay informed!
      YOU can make a difference - all you have to do is try!

      Dx age 12 current age 46 and counting!
      lost: 5 family members to HCM (SCD, Stroke, CHF)
      Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
      Therapy - ICD (implanted 97, 01, 04 and 11, medication
      Currently not obstructed
      Complications - unnecessary pacemaker and stroke (unrelated to each other)

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      • #4
        Re: Treatment by a doc who knows HCM - the difference!

        Ya!

        Very excited for you!

        Also wanted to thank everyone and share that NEMC has been a wonderful change for our family!

        We went the other day so that they could do his echos and stuff ... so nice and relaxed ... warm and friendly ... what an awesome experience!

        And now we are so excited because we get to go meet the doctor's tomorrow and finally get some answers ... I haven't been this excited in who knows how long! I am like a little kid with a HUGE candy bowl!!!

        Hope everyone has a great night!

        Keep up the encouraging news and stories!

        Thank you!
        \"Find rest, O my sould, in God alone; my hope comes from him. He alone is my rock and my salvation; he is my fortress, I will not be shaken.\" Psalm 62:5-6

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        • #5
          Re: Treatment by a doc who knows HCM - the difference!

          Cindy,
          That's wonderful news for you and your family to have found such a caring doctor. I hope Lisa has his name on file for anyone in your area.
          Nancy

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          • #6
            Re: Treatment by a doc who knows HCM - the difference!

            Yes, Lisa has the doctor's info on file ...

            When I first made the appointment I was nervous, worried since my husband's first and second cardiologists weren't exactly on the ball ...

            Thankfully Lisa is familiar with where I am going, and was able to comfort me and confirm that we were going to be in great hands!

            It's so wonderful having all of you out there! Confirmation that this board is so important and everyone's contributions help so much!

            Thanks everyone!
            \"Find rest, O my sould, in God alone; my hope comes from him. He alone is my rock and my salvation; he is my fortress, I will not be shaken.\" Psalm 62:5-6

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