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Another appt with the transplant team

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shirleymahoney Born In Tulsa Oklahoma and have a wonderful husband and 2 great children Find out more about shirleymahoney
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  • Another appt with the transplant team

    I have another appt tomorrow and i'm really glad because i think i'm getting Bronchitis again my daughter had it 2 weeks ago and i woke up yesterday with it coughing bad, and then the doc is going to want to change around my meds and that does not make for a happy camper here, i've had so many med changes i don't know what i'm suposed to take from day to day anymore and one top of all that i think I over did it today, i got angry at life today and took it out on my house well let me just say my living room is spottless now and rearranged, but i guess i will recover from it, wish me luck tomorrow and hope i'm feeling better or at least doc can give me something for this bronchitis everyone have a great day tomorrow

    Shirley
    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
    Best of luck and please keep us posted.

    Reenie
    Reenie

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

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    • #3
      Shirley,

      I call that "therapeutic housecleaning"--nothing like anger or frustration to get the house clean...... However, I've read enough posts on the forum already to know that you are frequently the one caringly advising others to "take it easy", so be sure you do too. Good luck with getting better from the bronchitis and with your appointment--Lisa Inman

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      • #4
        Shirley ,

        Sorry you are not feeling well and the frustration of HCM is getting to you. I hope it passes by and you get on top of this with the great positive outlook that you inspire so many with. Take your time and let yourself get mad , just try not to overdo it in the work department. Easier said then done , I know.

        Hope all goes well with your appointment.

        Pam
        Dx @ 47 with HOCM & HF:11/00
        Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
        Lead failure,replaced 12/06.
        SF lead recall:07,extracted leads and new device 2012
        [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
        Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
        Genetic mutation 4/09, mother(d), brother, son, gene+
        Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

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        • #5
          hi shirley.I know how you feel getting frustrated w/hcm.I have done the exact same thing(pushed myself to hard) only to find myself lying down for a while afterwards.it's frustrating to say the least. I hope you feel better soon,and everything goes good at your appt.feel better mike ob
          One day at a time.

          Comment


          • #6
            Hi, Shirley,

            How did the appointment go?

            Rhoda

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            • #7
              Shirley,

              I have some calls out to ask some very hard questions and open a dialog with the medical community on an important topic - how to properly list HCM patients for transplant. HCM is not like other types of hearts that require transplant and it is poorly researched.

              I will be in touch with you soon.
              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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