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Some good news at a tough time


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  • Some good news at a tough time

    Hi everyone,

    This has been a really tough time for all of us in the HCMA community. The many messages have expressed how truly shocked and saddened we are by the death of 'Lisa I'. I can't even imagine what Richard and Lisa's family and students are going though. I will be praying for them.

    Even though many of us never met her in person, I think we knew her spirit, enthusiasm and kindness. I have thought about her every day since her passing. My wife broke down in tears when I told her. Even though she had never met Lisa, or posted on the boards, she felt Lisa must have been a wonderful person to have her school, students and friends care about her so much.

    As many of you know, I had a very tough myectomy myself, and there were times when I didn't think I was going to make it. But I did and after all the setbacks, I am finally feeling some real benefit from the surgery. I know Lisa would be happy for me and would want me to share this with you, particularly since we often seem to be getting bad news.

    For the first time in 4 months I can see real improvements. I have no chest pain at all, my breathlessness seems to be better and I even went surfing for the first time last weekend. I felt so good in the water, perhaps better than I have in years. On our last night on the coast, we celebrated my birthday, drank some wine, ate cake and so on. The next morning, with a slight hangover, I got up, went for a walk and then packed up all of our bags, the baby's crib etc ready for the trip home.

    6 months ago, this would have caused me considerable pain and breathlessness. Yet there I was, full steam ahead, with no problems at all.

    I hope this little bit of good news gives your spirits a lift, as it has for me. God bless Lisa Inman, we will always remember her.


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

  • #2
    It is good to hear your good news. Well said about Lisa.
    John & Connie


    • #3
      Terrific news. I'm glad to see that rough road to recovery hasn't got the best of you. Enjoy life and live it to the fullest. Do not let HCM control your life, you control HCM...

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


      • #4

        That truly is wonderfull news and you are right, Lisa would be happy to hear it too. Somehow wherever she is beyond us , I just know she is smiling and happy for you also.

        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


        • #5
          Dear Paul,

          Hooray! I'm glad you are improving and getting back into the "swim" of things.

          Happy 4th!



          • #6
            Yay! Glad to hear you're feeling so much better!!!


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


            • #7

              That's exactly what I needed to hear this morning. I'm so glad that you are doing so well and surfing too?? WOW. Sounds like you had a wonderful time and I am so happy for you and your family. Very well put about Lisa - we will all miss her and I do not go through the day without thinking about her over and over. I hope we can all continue to share our uplifting stories - that's exactly the way our dear Lisa would have wanted it.

              Cheers to you!

              41 years old. Diagnosed with HOCM in Feb 2005. Myectomy at Mayo on June 8, 2005


              • #8
                Paul, I am so happy for you. We all need to remember that Lisa's situation was an exception not the norm. Paul and many more of us who have had myectomy's and went on to lead relativily normal lives. My myectomy was in 1981. I had wonderful results for many years.

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


                • #9
                  Thank you for sharing your wonderful news and I am thrilled to hear that you are feeling better.

                  Lisa will remain in our hearts and minds forever, she was in fact a teacher in every sense of the word, her lessons will be forever remembered here.

                  Paul-your success is a wonderful message to many and may you have continued improvement!

                  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)


                  • #10
                    Some Good News At A Bad Time


                    Great to hear you are doing so well. When we go through a myectomy, we expect to feel great afterwards, like our friends here have reported. Unfortunately, we don't always recover from the surgery as fast as we had expected. Surgery takes time for recovery; and, each one at their own pace. Some with exceptional healing and good fortune; others, with some "potholes" in the road of HCM life. It is good that you are experiencing the benefits of the myectomy. May they continue.

                    Diagnosed 1996, Myectomy Aug. 2000, 3 Radio-frequency ablations for a-fibs 2003-2005.


                    • #11

                      That is such great news after the rough start you had keep it up and again i'm so happy for you

                      Lisa i know she is smiling down on you today

                      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


                      • #12

                        Wonderful news! I'm glad you're feeling so well!!!
                        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.


                        • #13

                          I am so happy for you. You deserve this so much.
                          And surfing, I am sooooo jealous! I love the ocean!

                          I wish you continued improvement and great wellness.

                          Very well said about Lisa. I think about her everyday and may God forever bless her and her family.

                          I am very glad you are doing well.
                          All the best to you.

                          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.


                          • #14
                            Thanks for the good news report Paul!

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


                            • #15
                              Paul - We are all thrilled to hear that after hitting some bumps along the road you are now feeling well. Watch out for those giant waves!!

                              Take care,

                              Daughter of Father with HCM
                              Diagnosed with HCM 1999.
                              Full term pregnancy - Son born 11/01
                              ICD implanted 2/03; generator replaced 2/2005 and 2/2012
                              Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.