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God Bless Elaine

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Lisa Salberg Find out more about Lisa Salberg
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  • God Bless Elaine

    Long time HCMA member Laura, has lost her sister Elaine yesterday. Elaine was the second sibiling Laura has lost to HCM.

    I am on the phone now with Laura and I know she would appreciate your prayers and thoughts.

    God Bless Elaine.

    Peace to all,
    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)

  • #2
    Re: God Bless Elaine

    God be with Laura and the rest of Elaine's family.

    Reenie
    Reenie

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

    Comment


    • #3
      Re: God Bless Elaine

      Laura God Bless you and stand by you and your family through this tragedy. 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


      • #4
        Re: God Bless Elaine

        Laura
        You and your family will be in my thoughts and prayer during this very difficult time.
        God Bless You and Elaine
        Joyce
        \"We are not human beings having a spiritual experience. We are spiritual beings having a human experience.\"
        Pierre Teilhard de Chardin

        Comment


        • #5
          Re: God Bless Elaine

          Laura, You and your family will be in my prayers. I'm so sorry to hear about Elaine. Linda

          Comment


          • #6
            Re: God Bless Elaine

            Laura, many prayers for you and your family at this difficult time.
            My thoughts are with you.

            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


            • #7
              Re: God Bless Elaine

              Laura,

              I am so sorry to hear of your loss! I will be praying for you and all your family. Please share Elaine's story with us when you feel that it will help you.

              Rhoda

              Comment


              • #8
                Re: God Bless Elaine

                Laura,
                my prayers are with you and your family.
                \"It is not length of life, but depth of life.\"

                Ralph Waldo Emerson

                Comment


                • #9
                  Re: God Bless Elaine

                  Laura

                  God bless you and your entire family

                  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


                  • #10
                    Re: God Bless Elaine

                    I want..in fact I need to share something with you all. Today I spoke to Elaines husband. As you can imagine he is very upset and dealing with tremendous pain with the loss of his 44 yr old wife.

                    While all calls dealing with the death of a loved one are very difficult, this one was even more so. After listening to Michael talk about what his wife has been through in the past 5 or so years it simply broke my heart. She received no clear information on her condition, her meds were all over the place and she was in fear of communicating with her health care providers much of the time. Doctors changed practices and never notified that they were no longer 'her doctor'.

                    Elaine makes it clear that "WE" - the HCMA - the patients - the doctors - the hospitals - the insurance companies...WE need to do MORE - we need to do it BETTER and we need to remember all of the "Elaines" of the world.

                    Elaine may be gone - but the lesson she has left behind will do much to help change the face of health care - HCM care - HCM ADVOCACY.

                    PLEASE DO NOT TAKE NO FOR AN ANSWER - if you are not feeling well - FIGHT for answers - PLEASE make sure you really understand your options and if in doubt - please reach out for help, we may not have all the answers - but we sure can lead you to those who know best.

                    May God bless Elaine, her husband, her sisters and her parents as they come to terms with all that has happened. I will make this promise - I will never forget what Elaine has taught us and I will work to do my best to STOP anyone from walking down the same road in the future.

                    Sincerely,
                    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


                    • #11
                      Re: God Bless Elaine

                      Love you Lisa . . . . Seems like we don’t say that enough.
                      Burt

                      Comment


                      • #12
                        Re: God Bless Elaine

                        You know as I read this post I could not help but think how many of us lived a version of what Elaine faced daily. If not for Lisa and this wonderfull, supportive, informative place she created for each of us , our families could be dealing with what Elaine's family is facing now. Perhaps as Lisa says it is truly time for some of us to be even more proactive as in at least trying to inform our extended families of what could also be happening to them. I know that I have tons of family that most I will only see at the next funeral. A large multicultural family that has drifted it's separate ways as the matriarcal and patriarcal members have since passed. Through the tagedy of Elaines death we need to bring about a positive inspiration to try and help others not go through this. We need to all keep trying harder. As Elaines family mourns her loss we too mourn the loss of another HCM family member. My Prayers are with each and all. Thank you Lisa for all you do. 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

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