If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

Cardio Frustrations

Collapse

About the Author

Collapse
cheerchicken05 Find out more about cheerchicken05
X
Collapse
 
  • Page of 1
  • Filter
  • Time
  • Show
Clear All
new posts
Previous template Next
  • #1

    Cardio Frustrations

    most people my age are stuck in love triangles. im stuck in a doctor triangle.

    like most of you i saw dr. maron a while ago and he pretty much couldn;t say whether or not i should get a defibrillator because i was in such a grey area. i dont have fam history, ive never passed out or black out, i just have really bad symptoms and my measurements are wrather big.

    SOOOO anyway Dr. Maron (Barry maron) said he wasnt sure so it was up to my family.

    i went to dr. ross (my local cardio) on thursday and he said the he talked to dr maron, and i NEEDED a defirillator. which is waaaay different from what maron told us. he set me up an appt to see dr. mazel, who puts them in.

    its not over yet!!

    i saw dr. maron a while back...he doesnt even think i have HCM, he thinks i have athletes heart and in 6 months it will go back down...but im going to see him about a necessary defibrillator that the head hancho didnt say was necessary!!! IM SO CONFUSED!!!

    every time i see a cardio my brain hurts more!

    I was also switched to Vepramill because the atenolol wasnt helping chest pains. So far its been good....my first couple days of atenolol were ****...it hit me like a smack in the face and i was so tired i couldnt do ANYTHING. but the vepramill hasnt had anything like that yet

    All for now, toodles!!!
    ~janelle*
    \"The heart swells at the magnificance\"

    1 timothy 4:12: Do not let others look down on you because you are young, but set an example for believers in speech, in life, in love, in faith, and in purity.
    Tags: None
  • #2
    Re: Cardio Frustrations

    Wow. I'm sorry you are getting the run around.

    A few things you should know....

    One...the only symptoms that "count" toward sudden death risk are fainting, ventricular tachycardia and decreased blood pressure during a stress test. If you don't have any of those, your symptoms, while a drag, are not an indication that you need an ICD.

    Two, unless you have several risk factors, your insurance probably won't cover an ICD (and they cost about $70K to get). Just have a really thick septum is very rarely enough all by itself (although there is one guy on the board who has one due to his septum, but it was over 3cm).

    Do not let anyone push you into a decision you are not comfortable with. You will have to live with the ramifications for the rest of your life and there are risks with having and getting an ICD, too. Unless you have an overwhelming set of risk factors, it isn't something to rush into.

    If Maron isn't even sure you have HCM, then waiting seems like your best option---it may all resolve itself. If your local cardio is pushing too hard, tell him to back off and/or find someone else. His job is to take care of you, not cover his butt.

    Take care and keep us posted,

    Sarah

    Comment

    • #3
      Re: Cardio Frustrations

      lol lemme clear it up a little.
      Maron & Ross KNOW i have it. Maron said he doesnt know if i need an ICD Ross said i DO need one, and he came to this conclusion WITH dr. maron (eventhough its different that what maron told us) Mazel is the one who wasnt sure i have it, and the only way he is really in this is that he implants them.

      buuuut since dr ross said he came to this conclusion WITH dr. maron, my mom has tried to contact him to get his opinion. unfortunatly, hes out of town til the 16th, so moms gonna call him then.

      My walls arent over three, but they can be 2.8. Im not worried about having one, sometimes i think it might be a good idea...im just scared to get one. and thats the easy part!! i just havnt really been inhospitals other than visiting people...so its a new thing...thats all
      ~janelle*
      \"The heart swells at the magnificance\"

      1 timothy 4:12: Do not let others look down on you because you are young, but set an example for believers in speech, in life, in love, in faith, and in purity.

      Comment

      • #4
        Re: Cardio Frustrations

        I'm glad your mom is waiting til she talks to Dr Maron. He's your best bet right now. Good luck.

        Reenie
        Reenie

        ****************
        Husband has HCM.
        3 kids - ages 23, 21, & 19. All presently clear of HCM.

        Comment

        Previous template Next

        Today's Birthdays

        Collapse
        Working...
        X