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Update on me


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shirleymahoney Born In Tulsa Oklahoma and have a wonderful husband and 2 great children
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  • Update on me

    Hi everyone, I'm still alive I have a question for anyone that has had a myectomy that might know when i should be getting some of my energy back, i am beginning to think it's not coming at all I had surgery Febuary 23 I would think that i would have gotten some back by now, if i get up and say clean house one day i'm no good the next 2 days afterwards, i still have to use oxygen at night and sometimes during the day, i find that it is usually when i'm retaining fluid, i will be off restriction the end of this month and i have another question has anyone ever taken Tiazac for this disease, they have me on it and i was taking diltiazem before surgery is thai the same thing because the doctor put my dad on the same thing but he had blocked arteries and i thought that med was to keep your arteries clean, well i hope everyone is doing well, Does anyone know how MIdge is doing these days i haven't read anything in a while now

    Diagnosed 2003
    Myectomy 2-23-2004
    Husband: Ken
    Son: John diagnosed 2004
    Daughter: Janet (free of HCM)

    Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

  • #2
    Re: Update on me

    Shirley, I can't help you with the myectomy info, but I hope you are feeling better soon, and I was thinking of Midge also..
    \"It is not length of life, but depth of life.\"

    Ralph Waldo Emerson


    • #3
      Re: Update on me

      I wish I could do more, but this is all I found.

      Tiazac Is used for Treating Hypertension. Tiazac is a calcium-channel blocker.

      CARDIZEM® (diltiazem hydrochloride) is a calcium ion influx inhibitor (slow channel blocker or calcium antagonist). Diltiazem is used to treat high blood pressure and to control chest pain (angina).

      Good luck – I hope you feel better soon.


      • #4
        Re: Update on me

        Shirley, I'm having my myectomy on May 17 at Cleveland. I hope your up and running real soon and getting back to a normal life...Tigger1
        " Real Courage Is Being Scared To Death But Saddling-Up Anyway "


        • #5
          Re: Update on me


          Recovery time varies. Your situation is a bit different, you posted that your doctors were not satisfied that the procedure relieved the obstruction as they felt the obstruction was too low in the ventricle.
          I would highly recommend you see a specialist in an HCM center that regularly preforms myectomies. I know there were insurance issues that lead you to not seek out a specialty center for the procdure in the first place. You can go anywhere you want to go - you may have to fight with the ins. company to pay for it...but even if they do not pay for it...it is your life - I am sure you would agree it is worth a few dollars - even if you have to pay it off $50.00 per months for the next 5 years!

          Please take care of yourself.

          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)


          • #6
            Re: Update on me

            Shirley, I do hope you notice better improvement very soon. Linda


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