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Radio frequency ablasion, what's next?

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tommysgirl Find out more about tommysgirl
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  • Radio frequency ablasion, what's next?

    It's been a long time since I've been on the board...... to long! Hubby is 40 diagnosed at 38 (4/01). Had two alcohol ablasions - four months apart. Then emergant open heart surgery which included a myectomy. He did the cardiac rehab.
    Had continual problems with: high blood pressure, shortness of breath, chest pain, light-headed, edema, and coughing. He went in and out of a-fib for a few months then continual a-fib with episodes of ventricular tachycardia.
    At this point he was finally put on amiodarone (9/02). Jan. 03 they discussed radio freguency ablasion. He agrees and it is done on 4/22/03. Three weeks later a-flutter, a-fib has returned.
    He is told that he is deconditioned (Via phone tag) by his cardiologist. He is then given an event monitor (6/03) by the electro physiologist and told to come back in a month. That was three weeks ago. He is having edema in lower legs and back to coughing all night long. He doesn't get a call back from his cardiologist for days, when he calls in with a concern.
    He is extremely frustrated at this point! He feels that his disease is not important anymore and that the doctors think it's all in his head.
    We are in Florida with no way to get to any of the out of state specialists at this time. Could anyone tell us if the Mayo Clinic in Jacksonville has doctors that associate with the Mayo specialists out of state?
    I desperately want to help hubby find a better treatment.
    tommysgirl wishes you a blessed day with many laughs and smiles along the way!

    Wife of Tommy Hall passed 9/22/07
    HOCM, (AA x2, CABG, RFA, Myectomy x2, Maze)
    Tomy 13
    Amber 25
    grandchildren Aiden 6, Maddie 4

  • #2
    Re: Radio frequency ablasion, what's next?

    Hi,

    You know, you are not the only one who has had a lot of trouble with doctors in Florida in general. I would love to hear from someone who has actually had CONSISTENTLY good medical care in FL.

    I'm very sorry your hubby has been put through the ringer.

    The Mayos are all connected, but the HCM guys are all in Rochester, Minnesota. You should call the cardiology dept at Jacksonville and ask them how they handle a situation like that. However, you really ought to try and get hubby to an HCM specialist in person. Please call Lisa to find out if there is another center that is easier for you to get to if you think Rochester is too far. There are people in NY and BOston, for example.

    take care,

    S

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    • #3
      Re: Radio frequency ablasion, what's next?

      Your situation sounds something like what I went through but nowhere near as extreme. what part of Florida are you from? I'm from the Orlando area. My alternative was taking a flight to Boston but it did pay off big time! It was well worth the two fllights!

      At UF I was constatnly told nothing was wrong and that I could do anything that I wanted to without any chance of sudden death. Went to NEMC and found out I have 3 of 6 factors and so my second flight there was for the ICD impant.

      The only thing I regret is not going there sooner!

      Mary S.

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      • #4
        Re: Radio frequency ablasion, what's next?

        PLEASE lets get him to a specialist. I know we have talked before and I remain concerned for him. Mary and you have more in common then you know... you two should talk to each other privately.

        Can you get to any of the HCM centers... Minneapolis, Rochester, Cleveland, Boston??? I will be happy to make a call to see if they can get you in ASAP!

        I am sorry to see he has had such a hard road... please let him know there is still a great deal of hope that he can regain a better quality of life and that I do not think it is all in his head.

        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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        • #5
          Re: Radio frequency ablasion, what's next?

          Ok I live in Panama City Fl and had very little luck with doc here. In the beginning when he saw me a few times, he told me that it wasnt too serious and to stay off salt..... he then sent me to the nearest military hospital and I felt discarded. I really had myself convinced that I would be ok. The doctor in Biloxi Miss looked me over along with the echo tech and had to take another look.......he was very shooked at how bad my case was at my age. 4 months later I had pacer/defib put in. He made it very clear that myectomy or abaltion could be in the near future. He has taken very good care of me and become part of the family practically. As a matter of fact, he continues to check on me even though he is at another base training students. I guess Im against docs here only because I suffered the wrath of the doctor who loves the money and not the job.............honestly I feel its very well worth the 8 hour round trip to Miss. because I feel like Im taken care of, when I have the myectomy he has made it very clear that it will more than likely be at the Mayo clinic. good luck
          Lana

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