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  • new to messageboard kellyclk in PA

    I am new to the website. It was given to me by Dr. Lever. My husband was diagnosed in Aug 2001. He has gone through all Meds including an Alcohol Ablation at CCF w/ Dr. Tuczu. Ablation was not successfull and suggestion by Dr. Lever to have myectomy. My husband also had applied for disability and was turned down we appealed and have a hearing in Feb 2003. If anybody has any thoughts or suggestions please let us know. We would be very greatful. Thanks to all who care.

  • #2
    Many have been there...please remember disability is not "won or lost" based on diagnosis...they look at physical ablity and to what level you are unable to productively participate in the work forse. Some people get caught up in the diagnosis..that will not help your case at all. I hope you have a lawer to help you, if not you should get one.
    Dr. Lever is a good friend of the HCMA and I am glad he sent you our way. Let us know how we can help further.
    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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    • #3
      Kelly,

      While I can be of no help with the Disability part, I will be more than happy to help the two of you out with the myectomy part. Let me know how I can help.

      Bob Hartwell
      Cleveland Myectomy Crew
      Member since November 2002

      \"Chance favors the prepared mind!\"

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      • #4
        Dr. Lever suggested I have a myectomy which was performed at CCF only 5 weeks ago. Many members of this assoc. and message board report far fewer symptoms after a myectomy. After 5 weeks I'm back to work. You don't give many details of your situation but disability may be premature and don't be afraid of a myectomy at CCF. The care I received was excellent and my recovery easier than I expected.

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        • #5
          Wow Dennis, 5 weeks is a speedy recovery. I know for me, it took 7 weeks for all of my pain to subside. I then took a couple of more weeks off just to be sure!

          Bob
          Cleveland Myectomy Crew
          Member since November 2002

          \"Chance favors the prepared mind!\"

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          • #6
            Bob-I've been very pleased and probably lucky. I have only occaisional mild discomfort when I roll around in bed to shift sleeping positions. No prescription pain medicine for several weeks but do use tylenol some days. My work is mostly sitting and shuffling papers so it isn't physically demanding. The scar is a little tender and itches a little. I haven't been dizzy or breathless since the surgery and am beginning to walk more to build up some stamina. I also spent many hours over several weeks mentally preparing for the surgery using guided imagery CD's offered thru CCF and some other sources. These helped me mentally prepare for the procedure and rehearse for a speedy recovery. I can't say for sure how much these preparations helped but I was relaxed and confident before surgery and I seem to be recovering nicely.

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            • #7
              Dennis,

              I am glad it is all working out for you too. BTW - the tenderness and itchyness sticks around for quite a while. I also used the guided imagery before had. I was still nervous though.

              Bob
              Cleveland Myectomy Crew
              Member since November 2002

              \"Chance favors the prepared mind!\"

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              • #8
                Hi Kelly,
                I hope all goes well with you and your husband. I have not had either of these procedures so i can not comment on that part. I do know that if your husband feels he can No longer work you need to get an attorney.
                He needs to do what is best for him! And your family.

                God Bless
                Laura Johnson

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