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Crazy day

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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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  • Crazy day

    Well my day has not started off good, my father called and said he's been in the hospital, he is 86 years old, went to church Saturday, when he got home he felt very hot and dizzy, called my older brother he took him to the hospital with a blood pressure of 200 over 100, admitted him because of fluid buildup around his heart and stomach, he is ok now, the doctor increased his lasix to 3 times a day, he's had CHF for about 16 years when he had a triple bypass, dr said his heart was strong as an ox for a 86 year old man



    Now for my neice, she got her Echo report back and this is how much her doctor knows about HOCM, Her Echo showed Septal thickening of 3.7 and said it was normal for HCM , an out flow of blood at 43% EF of 75%, she had the ablation 2 years ago that took care of the obstrution, 2 months later her entire heart enlarged, but said she did not have the obstruction any longer, now it appears she has an obstruction, she let me listen to the recording, and it sounded like it was no big deal. So i told her to call Lisa, leave a message for her to call you, she is giving up , she says there's no one that will help her, i told her yes there is , Please call Lisa!!!!!!!
    They also told her that her white blood cell count was high, but didn't tell her how high, and to call her PCP, and that they would see her in January. Now insn't that a crock, Thanks for letting me vent, i can't stand that she wants to give up, i can't believe that her origanal doctor in Houston didn't give her an ICD being her father died from HOCM, my doctor said 2 weeks ago , it was a good thing they put one in me, and Bob was just my brother, he is her father, need advise please!!!!!!!!
    i would really appreciate any advise you guys could give to pass on to her, she doesn't have a computer. so i'm doing all the computer research for her and sending it to her
    Take Care
    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
    Re: Crazy day

    Shirley, Is this the niece who just had the baby? If so, she is still going thru a lot with that. She needs to get her health care coordinated between all docs. Those hormones and the exhaustion that goes with pregnancy and new motherhood wreck havoc with anyone. Imagine what it would do to someone with additional medical problems . She is fortunate to have someone like you to help her and encourage her. Keep encouraging her and remind her just how important she is to that new little life. There is help available. If I've confused her with someone else with a new baby, I apologize. Even so, there is help for her and I hope she finds it very soon. Best wishes, keep us posted, Linda

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    • #3
      Re: Crazy day

      Linda

      This is another niece of mine, i did have another niece that had a baby with complications, they are fine now, the niece that has HOCM is my oldest brothers girl, he died 16 years ago from HOCM, i wish i could get her here, she has 4 kids and don't want to leave them for that long, i would take her to see Doctor Gilligan, I think he would do something to help her, i told her to call her insurance company and see if there is an HCM specialist they would pay for her to see. then i called her mother and she said she would take her where ever, she is so worried she is going to loose her daughter due to incompetant doctors like she did my brother.
      Take care
      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

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      • #4
        Re: Crazy day

        3.7 is huge! Please let your sister know that there are great doctors who really care, they just aren't down the street.

        If she really isn't going to call Lisa, call Lisa yourself and see what she recommends.

        You may also want to talk to your sister about the futrue of her kids --if she doesn't get to the right doctors, she isn't going to have to worry about leaving the kids for a few days or a weekk --she'll have to worry about forever.

        good luck,

        s

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        • #5
          Re: Crazy day

          Shirley,

          If she is just a little shy - see if it is OK with her if you give me her number and I can call her directly. If she is not interested that is fine, but do make the offer. If she says yes PM the # to me.

          Take care of yourself!! I hope all goes well with your dad.

          Be well,
          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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