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Anniversaries are hard...


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Lisa Salberg Find out more about Lisa Salberg
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  • Anniversaries are hard...

    time line -
    June 11, 1995 talk to Lori on the phone - thanked her for the wonderful baby shower and talked about her experience delivering my niece and nephew. John was messing around with Stacey in the back yard, she fell hurt her leg - Lori got off the phone to help her. 30 minutes later she called back with the full story of how the kids were messing around and yet again one got hurt we talked until about 9:30 - then I said "talk to ya later, Bye!" and she said "good bye"

    June 12, 1995 5:50am the phone rings - it is my mother, Lori is not breathing my father is on the way to help- they were going to St. Clares - I said I will met you there. Somehow got dressed Adam drove - i did not know what to expect - was she dead? Was she OK?

    June 13, 1995 She had been transferred to Morristown Memorial - we were waiting for her to wake up to see how much damage was done. It was Tuesday - she did not wake up and seemed to be drifting away.

    June 14, 1995 The EEG shows slight activity - but it may only be artifact, it is not looking good. She has a fever it gets very high 104. She is failing and looking so still and distant.

    June 15, 1995 The transplant team speaks to us, will we let her be an organ donor. YES Lori would want to help others. We all agree that if the EEG shows no improvement Friday that we would permit them to remove life support, which is breathing 100% for her at this time.

    June 16, 1995 4:10pm - I sat with Lori alone and begged for her to awake. 4:30 the doctor came in to "say good bye", I watched as he cried and kissed her forehead and signed some papers and left. I returned to the room and continued to beg her to wake up and end this nightmare. What I did not understand at the time was that when her doctor came to say goodbye the paper he had signed was her death certificate. She officially died at 4:36pm. The transplant team arrived at about 1am and she was released to the funeral home on June 17, 1995.

    The wake was on Fathers Day she was laid to rest on Monday. To this moment I can re-Live that week nearly moment by moment. I can tell you what socks I wore to her funeral, for some reason I can not part with them - silly I know but we all have our ways to remember.

    What is also very odd is that June 16 had already been my most dreaded day of the year. The day my sister died was the 5th anniversary of my stroke - which was on Fathers Day.

    This year on June 16 I will be visiting Dr. Maron at the Minneapolis Heart Institute and then taking a trip down to Mayo to visit Dr's Ommen and Dearani. I can not think of any place else I would want to be on that day!

    thanks for reading my tale - AKA my therapy!
    when all is said and done what I really want you all to know is that my sister Lori was a wonderful person and you all are benefiting from HER dream.

    God bless Lori!!!

    Lori's little sister, 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
    Now Lori lives on in all of us.
    Cleveland Myectomy Club
    August 31, 2004


    • #3
      My thoughts are with you Lisa. I know what you mean by these anniversaries being so hard, and all the little things you remember of that time. Lori's dream is a reality that all of us HCMers are gaining strength from, and I'm sure she is beside you every minute of the day giving you strength. I think it's great that you will be visiting Dr. Maron and the Mayo clinic on June 16th. It's a great comfort and a reminder that there are great people and good facilities out there helping us with this condition.
      Take Care


      • #4
        I'll be thinking of you next week.


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


        • #5

          Memories are sometimes a painful treasure. They hurt, yet we would not release them for all the world.


          God Squad co-moderator
          Nothing is as gentle as strength and nothing is as strong as gentleness


          • #6
            Dear Lisa,
            I know I don't know Lori but I know how it is to lose a loved one. I know that Lori is looking down on you and she's one of your Guardian Angels With the first and every HCMA conference that is held I bet she's watching from Heaven and cheering you on and is proud of you. God bless you.
            Kimberly K. Plaster


            • #7
              Lisa, know that I care. I wish I was going to be at Mayo next week but I go again on July 9th. Travel safe.

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


              • #8

                I am sorry. I understand that pain. It's hard and it's not fair. I never got to say goodbye to my brother.

                Thank you Lori for having this dream and thank you Lisa for fulfilling Lori's dream.

                So many people have benefited and will continue to benefit in the future.

                With love and respect,
                49 yrs. old
                Diagnosed at 31.
                Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
                First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
                Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
                Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
                My brother passed away suddenly at 34 yrs old from HCM.
                2 teenage children, ages 17 and 15.


                • #9
                  Dear Lisa,
                  Thank you for sharing your story. I hold you and Lynn and your family in my thoughts during this anniversary time. In Lori's memory you have touched so many people's lives in such an important way.

                  My husband and I will be arriving in Rochester Sunday June 19 for my surgery--it would be wonderful to meet you, but it sounds like we will just miss you.

                  I am only one of hundreds when I add my very heartfelt thank you, Lisa Inman


                  • #10
                    It happened again, 9th year in a row. I woke up at 5:45am today - I have done this every June 12 since Lori's death. This year is going to be different - this year I am attending the Keith VonRapacki 5k Run for HCMA.

                    Thank you all for your very kind messages - it is very important to me that Lori remain a part of my life and a part of the world, you all help to keep her memory alive.

                    best wishes,
                    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)


                    • #11
                      Hi Lisa
                      Thank you for sharing Lori with us. On the anniversary of my sons death, I think of all the wonderful memories he brought to so many people. There are times that happen in our lives that we will never forget, times we don't want to forget.

                      A hug for you to get you through the day.


                      • #12

                        Lori's story makes me so sad. I can just feel that bond you had with her, the kind of love and connection that we only ever have with a few people in our lives. Nothing can ever replace that and you will always miss her. But you have responded to that tragedy so positively and with amazing courage. Rather than sink into despair, you have seen light and found purpose, and in the process helped so many many people. I'm sure I speak for the thousands of people who have been helped by the HCMA when I say that you are deeply appreciated.

                        Lots of love at this sad time,

                        Age 38, dad of two young children, dx 1996, myectomy March 2005, a-fib issues, due for ICD soon.


                        • #13

                          My heart goes out to you and your family.

                          I think everyone has said it all... and YOU have done it all...not only for your sister, but for ALL of us! You are an incredible person. I personally believe the spirit does live on and I know Lori is aware of what you have accomplished...take care

                          \"It is not length of life, but depth of life.\"

                          Ralph Waldo Emerson


                          • #14

                            I can also remember every detail of my brothers event like it was yesterday and he has been gone 17 years now i guess that will always stick in our heads because we loved them so much

                            When you see Dr. Maron tell him i said hi and thank him for everything he tried to do for me

                            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


                            • #15

                              I can also remember every event that surrounded the days of my dad's passing! It's a hard time!

                              I'm thinking of you on this anniversary of losing your sister. I know she is so proud of all you do for all of us w/ this disease! Thank you so much!
                              Heather, 43, non-obstructive HCM, dx'd at age 14, AICD implanted 11-02, PVAI ablation done for a-fib and a-flutter 5-2010. 2nd PVAI done for a-flutter and a-tach 3-2014. 3rd PVAI for a-flutter June 2015, dr forgot to reset ICD settings and I went into vt and almost died, July 2015, July 2015-started tx work up, October 2015, put on list in Dallas and tx'd on November 14, 2015.