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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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  • update on my mom

    This is Janet...Shirley's daughter...well mom had her test done today and found out that both sides of her heart are stiff. I dont remember what the name of it is, but it was mild and the blood is not leaving the heart correctly and it is puddleing inside the heart. Which means that they are going to mess around with her med's and see if they can help her out. There is nothing else they can do. The only thing they said was that if the meds dont help then she will need a transplant. She is iffy about that, but well see what happens. The doctors are going to keep her in the hospital until "at least" Sunday. Keep her in your prayers.

    Thanks,
    Janet
    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 my mom

    Hi Janet
    Thank you so much for keeping us updated. Finally she is getting answers. I hope she takes one day at a time. Tell her I will include her in my prayers. Please keep us posted.
    Esther

    Comment


    • #3
      Re: update on my mom

      Shirley I know how it is to be stuck in the hospital for what seems like forever. I also know what it is like to have the docs scratching their heads. Just don't give up even when it seems like the docs have! Keep forging ahead and you will make it over this bump in the road.


      Mary S.

      Comment


      • #4
        Re: update on my mom

        Thank you for the update - Please tell Shirley we send our love and good wishes. It is sounding like her heart has become "restrictive" a rare but known complication of HCM. Med mgt and transplant are the treatments options now available. It still may be a good idea to get a second opinion prior to setting a plan of treatment.

        Send a few hugs and a big smile from all of her friend here in cyberspace!
        Thanks - by the way we all think your mom is a wonderful lady!

        Best wishes,
        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)

        Comment


        • #5
          Re: update on my mom

          Janet,

          Thanks for keeping us updated on your mom. She's pretty special to all of us and she's been in our thoughts and prayers. We all just want to see her get better dangit! Is Shirley up to receiving phone calls at the hospital? If so, please post or PM me the number and best time to call her.

          Thanks,

          Jim
          "Some days you're the dog... some days you're the hydrant."

          Comment


          • #6
            Re: update on my mom

            Hi Janet,
            Geez, you must have had your cage rattled rather badly too. Please take care of yourself – and watch out for your brother also.

            Tell mom that Burt sends his love (You don’t have to tell dad just now – he has enough on his plate.) If she is allowed phone calls please send me her number and best times to call. You can tell her I have some more jokes for her – we’ve swapped quite a few so far, - some not fit for posting.

            Mom must have asked you to post her status, and we all appreciate your doing so. Any more information would also be thankfully received. Your mom has made a great many friends here and we are all concerned about her.
            Burt

            Comment


            • #7
              Re: update on my mom

              Thanks for the update Janet!

              If she hasn't asked for it already, maybe you can remember her Travis Tritt CD or if she got anything from the concert the other night ... it was so great to hear that she had such a great time! Plus I too am a huge country music fan and have always wanted to go see Travis Tritt ...

              In our thoughts and prayers!
              Mechelle
              \"Find rest, O my sould, in God alone; my hope comes from him. He alone is my rock and my salvation; he is my fortress, I will not be shaken.\" Psalm 62:5-6

              Comment


              • #8
                Re: update on my mom

                Janet,

                Your mom will always be on my mind and in my prayers. Tell her to relax and stay POSITIVE...

                Tigger1
                " Real Courage Is Being Scared To Death But Saddling-Up Anyway "

                Comment


                • #9
                  Re: update on my mom

                  Janet & Shirley, thanks for the update. I like Lisa think it is Restrictive cardiomyopathy. That is what I had before my transplant. Shirley, I know they will try medicines, etc. Please if you move onto transplant stage let me know, I will be glad to talk to you about my experience. I am so much better. I will keep you in my prayers. Hang in there kiddo, it will get better. God did not promise us an easy time just a soft landing. Those of us with HCM or ex HCM as in my case, are usually strong people, so stay positive.
                  Midge

                  Diagnosed in 1977, Myectomy in 1981 @ Mayo Rochester
                  ICD&Pacemaker 1996
                  Heart transplant March 19, 2004 @ Mayo Rochester
                  Mom of Kaye.

                  Comment


                  • #10
                    Re: update on my mom

                    Ok everyone i'm back, i had my test run and as my daughter said i have gotten a stiff heart both left and right ventricles are siff , Dr. Gilligan said both ventricles and septum they have me on verapamil 240mg , iam in a daze right now everything is happening so fast it really threw me off to find all this out, but at least i got some answers now i have a lot to think about, But i did tell Dr. Gilligan that i would not have a transplant here, he says the med might work but didn't look all that excited about it, and i got to talk with a few of the surgeons that attended my surgery and oh the questions they had for me, and they were amazed at what i knew about the disease. I want to Thank all of you for the kind thoughts you have really become a part of my family

                    P.S Hi Rhoda
                    We got to meet finally thank you very much for coming to see me

                    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

                    Comment


                    • #11
                      Re: update on my mom

                      It is good to hear from you. I am glad you are getting answers and hopefully are on the way to feeling better.

                      Be well,
                      Lisa

                      PS - I am so happy to have YOU as a member of my family!
                      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)

                      Comment


                      • #12
                        Re: update on my mom

                        Shirley, ((big hug)) Thank goodness you are getting some answers. This must be a scary and confusing time for you. My prayers and thoughts are with you.

                        Take care,
                        Pam
                        It's not what you gather, but what you scatter that tells what kind of life you have lived.

                        Dx in Feb/99. Obstructed. No ICD, no surgeries, no family history. 2 sons ages 14 and 6.

                        Comment


                        • #13
                          Re: update on my mom

                          Hi Shirley,
                          It’s good to see you posting on the boards again. You say that Dr. Gilligan wasn’t all that excited about drug therapy helping, and you told Dr. Gilligan that you would not consider a transplant there..

                          Well, you’re trying the drug therapy first, but in the event it doesn’t help, don’t you think you should consider where you would have a transplant done, and get the ball rolling toward getting your name on a heart transplant list – just in case? These things can take years. If the drugs do work, - great – you can always have your name taken off the list. However, if the drugs don’t work you’d best start the transplant processes now.

                          Talk to Midge Rollins about it – our recent HCMA graduate. She’s still an active alum, and I’m sure she would give you the benefit of her experiences with transplants. Shirley, your family to us now, and if anything ever happened to you we would all be very upset to say the least. Your background does not bode well for procrastination. Think it through, then go do something about it.
                          Burt

                          Comment


                          • #14
                            Re: update on my mom

                            Shirley, I am so sorry you are having these problems. I hope and pray things will go better for you. Keep your hope alive and hang in there. 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

                            Comment


                            • #15
                              Re: update on my mom

                              Burt

                              I plan on getting the ball rolling, and i also plan on getting all the research i can and am also thinking of getting a second opinion about my heart and try to get on a list if it turns out that dr gilligan is right, but he sounds pretty sure of himself so we will see i promise i won't sit on this

                              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

                              Comment

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