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gh04261957 Find out more about gh04261957
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  • My Children

    My name is Gary Halbert and I live in Kaufman, Texas and until recently had no idea of the HCMA website. Wow what a great help this would have been for my wife and I had we only know. September 29, 1981 our daughter collapsed while running in gym class and she was rushed to the hospital and all the doctor could tell my wife was that we had a healthy daughter but she was dead and then the autopsy report came through and they told us it was HCM (athlete's heart to be exact). We had another child and we had him checked and ever thing was normal. So we began to pick up the pieces of our life and 2 years later we had another child, he was premature and stayed in the hospital for about a month and in this time we had his heart checked and we where told he had a perfectly normal heart. Great news!! But 4 years and 10 months later we where at a Sunday School party and Blake was jumping on a trampoline with other kids and they began to complain he wouldn't get up and let them jump, so I told him to get up but nothing, so I went over and picked him up and he was gone. We where sure we knew the cause but they told us he had perfectly normal heart so it couldn't be, so we thought maybe it was a trauma injury but it wasn't it was HCM again. This left us still the remaining one son and now he had lost a sister and saw his brother die before his very eyes. After the funeral we went to Houston to Children's Hospital to have Josh check. They did an EP study and shocked him into a heart attack and recovered him and placed him on medication, he now has a defibrillator and is 26 years old. Josh's is more electrical, his heart rate is very high and is going to have it replace very soon due to the battery, but is doing o.k. in life. He is very quite and holds everything in and doesn't talk about anything, so he has had some very emotional times in his life but is now married. Sorry this is so long but it my wife and I story.

    Thanks for listening

    Gary Halbert

  • #2
    Hi Gary,
    Belated condolences on the loss of two of your children. I hope Josh checks on this site also, but most of all I hope he goes to one of the three top places to be checked out completely and correctly. The three sites are Mayo Clinic in Rochester, MN, The Cleveland Clinic in Ohio, and Tuft’s New England Med Center (NEMC) in Boston.

    We have learned a lot about HCM over the past few years, but there are still quite a number of places that we do not consider ‘up to par’ in the proper treatment of this condition. A check-up will go a long way in protecting him, and insuring his future. The same will hold true with your grandchildren.

    Please check out the information available at this site, and ask your son to do the same. You are all more then welcome to read up on everything, and ask questions if you have any. We are a tight knit group who look out for our own, and would be more then happy for you all to join our ranks.
    Burt

    Comment


    • #3
      Gary, I'm so sorry for your tragic losses. I'm glad you've found us and shared your story with us. Have you told your wife and Josh about this web site? If and when you are ready, please call Lisa in the HCMA office and talk a bit with her. You will be surprised at how much more you will learn with a one on one conversation with her. Please stay in touch and let us know how things are going. Best wishes, Linda

      Comment


      • #4
        Thanks Burt

        Thanks for the information you provided, this will be very helpful. Josh now see's a cardiologist is Dallas, Texas at Baylor Hospital and he was the one who put in his defibrillator, the name of the clinic is the Heart Place. My wife and I are really concerned about our future grand children, but through our experience we know that least yearly check ups will be very important. One thing I forgot to mention about Josh, was when he had his defibrillator but in he went through some very bad depression, but through counseling he has improved. It really is amazing how much has been learned about this disease since our children died. Thanks again.

        Gary

        Comment


        • #5
          Hello Gary (& wife & Josh),
          First let me say how sorry I am that you have had to endure such loss! My heart aches for you and your family. Back in 1981 or 1985 there was no HCMA. We are all so very fortunate to have Lisa Salberg and the family that has formed here on the message board. So welcome to our wonderful support team!

          Thank you so much for sharing your story with us. It takes a lot of courage to stand up and tell people of your tragedies, unveil the pain that is regularly guarded and unseen. I'm sure that Josh guards his pain, too. I hope that he comes to the web site and we can help him, too.

          I lost my only child and son, Anthony Bates, to undiagnosed HCM in 2000. Anthony was 20 years old and a football player at Kansas State University. It was truly a blessing to speak with Lisa Salberg shortly after my loss and to find answers, education, and to offer my help in ways to support the HCMA. The work I have done with the HCMA and through my own foundation (The Anthony Bates Foundation) has been very healing. The pain of my loss never goes away it only hurts less over time.

          May you continue to find good support and ways to honor your children (all three of them) through helping others with your story, or your supportive words on the message board. We are all here for a reason, some to help others, some to work for others and many to love the ones we have touched.

          My question to you, have you and your wife been screened for HCM? This genetic condition has not shown up in my family in myself or my son's father. And I have heard other stories like mine, where the first sign of HCM is sudden death.

          I wish you all the best!
          Best Regards,
          Sharon Bates
          www.AnthonyBates.org

          Comment


          • #6
            Gary,
            Welcome to the HCMA. Your family story is so very sad and tragic and my heart goes out to you and your family. You have all been through a great deal - even though it was years ago.

            Your son has been through a great deal - if he would find it helpful to talk to others with HCM - have him contact us.

            I will be in the Dallas area in May at the Sarah Friend Remembrance Run/Walk - maybe I will see you there!

            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


            • #7
              Hi Gary. I'm very glad you've found us. I'm so sorry for the loss of your two children. Of course words can't convey the depth of my sorrow hearing their stories. Like Burton said, we are a close group and our goal is to provide information and support to those who are affected by HCM. Please do give Lisa a call at 973-983-7429. I'm sure you will learn a lot. I agree with Sharon too. Have you and your wife been screened for HCM? It would be unusual for all three of your children to have HCM and neither of you to have it. I'm only asking so that you seek medical care to manage the condition if you do have it. Please share more with us when you're ready.

              Reenie
              Reenie

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

              Comment


              • #8
                Hi Gary.

                Welcome. Your story is so sad. My heart goes out to you and your family. I am so thankful that Josh is getting good care and is doing well.

                Peace,

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

                Comment


                • #9
                  Hi Gary, Wife and Josh,

                  Words cannot express how deeply sorry I am for your losses. My heart goes out to you and your family.

                  Please let Josh know he is not alone in having this disease. I sincerely wish him, you and your wife peace.


                  Please join us here anytime with any questions, or to vent, or just talk.

                  Eve
                  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.

                  Comment


                  • #10
                    gary you and your family have been through a very big ordeal and i just have to say i'm so very sorry, some of us here can relate as far as losing family to this disease, i have lost several myself and also have a son with the disease and he has been shocked 4 times now all electrical with him also, if you ever need anything please feel free to ask here we are all family here

                    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
                      Thinking of all you have been through!

                      Wow! I just cried when I read your story. What a tremendous amount of grief you and your family have had to go through. I am so sorry. I can only imagine what your son is also going through! My 12 year old son was diagnosed in January. His dad and uncle both have the disease. I am so glad you found this website and hopefully your son can become involved in this site as well. We are like one big happy family and we all truly can understand the scope of what each other is dealing with. It has been such a source of strength for me. We will keep you in our thoughts and prayers!
                      My son James, Age 18, diagnosed in January, 05. AICD - 4/5/05 at Tufts NEMC. Myectomy -1/25/06 at NEMC. Currently having heart failure issues. James' father and uncle both have HCM and AICDs. James dad, Carlton, had Myectomy at Cleveland on 4/10/06. James Medtronic recalled lead fractured 5/26/11. Had Biventricular Cardiac Resynchronization AICD put in on 6/3/11 Emory Midtown.

                      Comment

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