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Banging my head against the wall!


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Toogoofy317 non-obstructed hcm, AICD 11-01-02 and 10-6-05 Find out more about Toogoofy317
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  • Banging my head against the wall!

    Well, its my first week back to work. (Yippee I survived).

    When I got home from work on Friday I got a message from the new cardiologist office confirming my appointment for Tuesday. Unfortunatly, the second message was telling me that my appointment had been cancelled and that I need to see my crack pot ex-cardiologist.

    This wouldn't had been so bad if I hadn't the previous week explained in detail why I needed to see the new doctor because of the falling out of my old one!

    What do I have to do to see a cardiologist! It's been almost three weeks since I've been discharged. My AICD has been set to 100% pacing by the new guy that now all of a sudden won't see me. The other won't touch me either.

    I am so frustrated that I just want to cry. Why is it so hard to get quality care down here?

    I'm also very stressed about my fit for duty physical tomorrow. With no cardiologist to consult with I hope this occupational health guy doestn't try to come to his own decisions! The cardiologist are dangerous enough!

    Sorry for my rant but I've had it with these idiots in Florida!

    Mary S.

  • #2
    Re: Banging my head against the wall!

    Dear Mary

    I'm so sorry you are getting such the run around. Can you call the good cardiologist back and try and get another appt or are they dumping you?

    I would call Maron and see if he knows anyone in your area or knows someone who knows someone who would see you.

    Good luck!!



    • #3
      Re: Banging my head against the wall!

      Talk to the people in the hopstial you work at - I am sure they can help you find a cardiologist. We may have to bring him up to speed a bit in the HCM area - but finding a "good person" is the key at this point.

      Take care,
      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)


      • #4
        Re: Banging my head against the wall!


        I'm sorry to hear that you're having such a hard time finding a good cardiologist... in fact it kinda sounds like you're having a hard time finding ANY cardiologist at this point! What a crock of *&$#@ !!!

        I see several opportunities for you at this point:

        1.) You need to entice Dr. Maron to move to Florida and become your personal physician. This may not be as hard as it seems... but will involve a length of rope, a large pillowcase, and one-way transportation.

        2.) Find a local ad for one of those topless college bars you have down there, complete with pictures... then carefully remove the words 'spring break' and replace this with the heading 'free cardiology conference'. Place this in the appropriate trade journals, and you may then have your pick of the litter.

        3.) Start importing HCM'ers by the busload and create the demand for specialists in your area. This may be accomplished similarly to #2, however please substitute "free echocardiograms and EKG' in the appropriate spaces.

        As you can see, i am always thinking of ways to help. Please let me know if i can be of further assistance.

        "Some days you're the dog... some days you're the hydrant."


        • #5
          Re: Banging my head against the wall!

          Mary - How far away are you from Jacksonville? Isn't that where the Cleveland Clinic office is where Dr. Asher relocated to? Could you see if he would treat you?
          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.


          • #6
            Re: Banging my head against the wall!

            JIM!! How dare you help Mary begin a life of deceit!



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


            • #7
              Re: Banging my head against the wall!


              This is a pretty sad topic with a pretty funny thread! Please remember that we are all rooting for you today and always, but especially today that you will pass the work physical! How can we help you remove that wall brick by brick? I can't think of what I can do to help, other than praying that it will just fall down by itself, so that is what I will do!


              • #8
                Re: Banging my head against the wall!

                In New Youk they say it’s de-seat. Mary, are your shoes nailed to the deck there in Flo-Rita? Sounds like ya-all are having as much trouble finding good doctors there as I am here.

                Why not get on the internet and go looking for work in Boston or Cleveland, where you can get proper care. I left out Minny-Sota because I don’t know if you could Bear the winters there.

                Did you pass the Go-To-Work physical today? How about your work hours and the school hours – were you able to get them coordinated?
                Love – Grand-pa


                • #9
                  Re: Banging my head against the wall!

                  Hi Mary
                  So sorry to hear that you are having problems finding a doctor you can rely on.
                  The winters here in Minnesota for the past four years have not been as bad as some states out east. If I can cope with them, anyone can. My blood pressure never goes above 84/56 and I am always cold throughout the year.
                  Good luck, I wish there was more I could say.


                  • #10
                    Re: Banging my head against the wall!

                    I want to go on record as having told Mary to move her rear out of that third-world state months and months ago (no offense to those who love/live/enjoy/etc Florida --I like it too, mostly Key West, but I have heard 20 bad doctor stories for every 1 good doctor from that state).

                    Anyone else have ideas for how we get Mary into school and lodging in a nice, warm state with good insurance and medical care, hop on the thread!!!