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New member need Mayo Help


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pfalck Find out more about pfalck
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  • New member need Mayo Help

    I am the father of a 15 yo male (young man) who has recently been diagnosed with HCM. We are from Iowa, and have been seeing a pediatric cardiologist in Des Moines. On advice of some family and friends (and with the blessing of his cardiologist) we have an appointment with Mayo Clinic in late March.

    A colleague's wife has also been recently diagnosed with HCM and has also been to Mayo. The hitch is that her initial visit there was to the cardiology clinic; however, they (Mayo) rescheduled her for the HCM clinic. Thus she had to make 2 trips instead of one.

    Upon learning about my son, and our appointment they (my colleague and his wife) advised me to make sure that my son was scheduled at the HCM clinic.

    Today I received the appointment confirmation letter from Mayo and it shows that his appointment is with a pediatric cardiologist; however he is not listed on the staff of the HCM Clinic. Sensing an error in communication in regards to my son's diagnosis, I called Mayo and was told by the person who makes appointments that this doctor is the right one for my son to see and that there is not a specific clinic for HCM.

    So now I am uncertain if the appointment we have is with the right physician or not. I have no prior experience at Mayo so any help in regards to this would be greatly appreciated!

  • #2
    I have sent you a Private message...
    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)