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tommysgirl Find out more about tommysgirl
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  • Horror Story Continues

    Let me start by saying that we were finally able to see a true HCM Specialist. Dr. Asher with Cleveland Clinic is awesome!!
    It's wonderful to have a true specialist in the southeast now.

    On friday, I went to the hospitals to gather the copies of all of Tommy's (hubby) event moniter strips, 24 hour holters, and cd's of the echos, cath's, etc. I began to review the written reports and then view the ekg graphs. Boy! Did I get upset. We had been lied to over and over. There are multiple errors in his records. There is documentation that he was put on coumadin on several occasions for afib. he has never been on coumadin! They'd just restart the amio.

    I recently took a class in interpretation of ekg's and acls certification for work. Now I knew how to read these strips better. There is a strip from 2002 that shows atrial tach to aflutter to afib to ventricular tach back to atrial flutter back to sinus rythmn. At that time we were told that it was just a little aflutter and that amiodarone would keep him in normal rythmn.
    By the way the final written report does state the above sequence.

    At this point I was glad that we were to see Dr. Asher on Monday. We had been told that his echos since surgery showed "NO" obstruction! (yet 3 reports state post surgical myectomy with obstruction) We also found that the so called local specislist documented in office notes that " even though he has gone through a lot over the past two years, he needs to let it go and get on with his life and get back to work. He is doing fine and continuing symptoms are not related to his heart."

    When we saw Dr. Asher, he took a lot of time with us. He answered all of our questions. We reviewed all of the questionable documentation with him. He examined Tommy and confirmed our suspisions. Tommy does still have an obstruction, which is causing his severe symptoms. By the way he found the obstruction on the echo cd that I brought him. ( which was read to be a normal echo here locally) He has advised him not to work until we can get the sress echo and transesophageal echo done. We couldn't do it yesterday, there is a problem with Tommy's esophagus.

    We are having a endoscopy done this month. We return to Dr.Asher for the stress echo and TEE or cardiac MRI on Sept. 17th. He wasn't happy that Tommy had two alcohol ablasions, a radio frequency ablasion and the triple CABG and myectomy. He agreed that we were misinformed about several options along the way. Depending on the testing outcome next month, depends on our options. There is a high chance that he will have to go through another myectomy. He is also getting the ICD. (Merry Christmas, right Lisa) We have told the local docs about his history and they kept telling us that he didn't need the ICD. Lisa and I knew better.

    How is hubby holding up? Not to well. He went to work to day to talk to the crew. He is once again trying to keep his emotions to himself. I know he is scared, so are the kids. Myself? I have to keep my faith in God, he has carried us this far and will continue to carry us through this also.

    Please remember to ask a lot of questions. Research as much as you can and always speak up when it doesn't sound right. We have had a horror story along our way. But we did challenge the doctors multiple times. Tommy would not be here today, if we hadn't!! I truly believe that we are on a road to recovery now that we found Dr. Asher.

    Thanks for letting me vent!! It is always nice to vent to people who understand.
    tommysgirl wishes you a blessed day with many laughs and smiles along the way!

    Wife of Tommy Hall passed 9/22/07
    HOCM, (AA x2, CABG, RFA, Myectomy x2, Maze)
    Tomy 13
    Amber 25
    grandchildren Aiden 6, Maddie 4

  • #2
    Re: Horror Story Continues

    Hi Tommysgirl-

    I am so glad that Monday went well and that you finally got to the right place. My husband, Alan goes to Tufts-NEMC on Friday and I am so looking forward to being able to ask questions and get real answers!! Going to the HCMA annual meeting and talking to Lisa and everyone there was the best thing we could have done. I'm tired, too, of going to a cardiologist here once a year, telling him all the problems and hear him say that everything's just fine. I can't wait to see, too if Alan should have had the ablation. I know nothing can alter the past, I'm just curious.

    Thanks for letting me vent, too and congrats on getting Tommy to where he needs to be to get the care he needs.

    Ange

    Comment


    • #3
      Re: Horror Story Continues

      Hi-

      My husband was diagnosed about 8 months ago and we really didn't realize how serious it was up untill recently. We also have a appointment with Doctor Asher this month. He sounds great. My husband had a ticket to go up to Cleveland which I couldn't go becuase I am pregnant and due in the begining of October. I can now drive with him to Dr. Asher.

      The hardest part is the not knowing and realizing that unless the Doctor is a specialist they really don't know a lot either. My husband is also obstructed and has bridgeing and probably will need surgery at some point.

      It sounds like you guys have been through **** but maybe now you can have some peace knowing you are in the right hands. Thank you for the positive feedback on Dr. Asher.

      Angela

      Comment


      • #4
        Re: Horror Story Continues

        I'm so glad you're finally getting the quality care you deserve!

        Reenie
        Reenie

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

        Comment


        • #5
          Re: Horror Story Continues

          I am so sorry for the mistreatment all these years - what a nightmare! I'm so glad you can finally move forward!
          I know it is the policy of this message board, that specific Dr names not be mentioned, if there are negative issues however, it would be unfortunate for others to receive the same treatment as you Husband has because, it wasn't made public what poor judgement & HCM knowledge this Dr has.
          Is it possible that we could know who was treating your Husband & what Hospital performed these proceedures & read the Echos & EKGs?
          RONNIE

          Comment


          • #6
            Re: Horror Story Continues

            Ronnie, I don't think we can post that information because it might set us up for libel or defamation. Sorry.

            Reenie
            Reenie

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

            Comment


            • #7
              Re: Horror Story Continues

              When I first met Tommy and his wife I must admit I was shocked by what they had been though - and I hear a great deal of stories. I am very happy that they are in the care of someone who will be straight and honest with them. Words can not express how happy I am that he will be getting proper care and that ICD! Now dont get me wrong - not everyone needs an ICD - but it is something that has made me concerned for a long time that Tom did not have one - as he has so many risk factors and his heart has been though so much.

              Best wishes 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)

              Comment


              • #8
                Re: Horror Story Continues

                I am so happy you are finally getting the treatment you deserve! So much for that teenager's heart right?

                I had these same bunch of quacks and they just out right stink. Why is it that these FLorida cardiologist like to blame everything on a psychological basis.

                It just makes me more greatful that the HCMA is here. Lisa got me out of that place before they did too much to me!

                Take care!

                Mary S.

                Comment


                • #9
                  Re: Horror Story Continues

                  Glad to hear your husband after being through so much is now heading in the right direction.

                  I know quite well of what you are talking about with the poor direction etc., since I lost my brother due to lack of knowledge. Let it go and Thank God he is now heading into the right hands.

                  I lost my brother 15 years ago and today we are fortunate to have Lisa this website and doctors that do care. Especially doctors that have dedicated their lives to improve and save our lives.

                  Good Luck

                  Comment


                  • #10
                    Re: Horror Story Continues


                    I am sure that someone has asked this question before so I'll begin by asking you all to be patient with me. Is it possible to survive a Heart Attack caused by HCM?

                    On April 21st of 2001 my husband died of a Heart Attack. He was 4 months shy of his 30th birthday. He went to take a shower while I was laying down due to a Seizure and when I woke up I found him sitting on my bath bench dead. I live with the constant feeling that if I had only stayed awake I could have performed CPR until the EMS arrived.

                    The Saturday before his death he passed out while doing dishes. We went to the ER where they did an EKG but not an Echo. We (his family and I) didn't know that he had HCM until we got the Autopsy from the M.E.'s Office in Tampa.

                    From what I have been told by friends who are in the Health Care field the ER physician should have ordered the Echo since Dan was 6'4", weighed 185lbs and was very active. (Of course this is the same Hospital who amputated the wrong leg on a patient and turned off the wrong ventilator in a Hospital room so that another patient died.)

                    I am disabled due to an accident with a Drunk Driver in 1990. I can't help but feel that if I had been there when it happened I could have kept him alive until help arrived. (We lived 5 minutes from the Fire Station.)

                    Would CPR have made a difference? Did I ignore some sign that night, he was acting very distracted, because he 'looked' so very healthy?

                    I suppose what I am really asking is ~ did I contribute to his death?

                    Thanls for giving me a place to speak about this. I have been living with this guilt for over 3 years and it doesn't seem as if it's ever going to go away.

                    Elaine
                    Elaine M. Hinchey
                    AKA Cabin Fever
                    CABIN FEVER ONLINE
                    www.cabinfever.modblog.com

                    Comment


                    • #11
                      Re: Horror Story Continues

                      Elaine.

                      I am so sorry that your husband died. My first wife died when she was 42 so I can relate to your sense of loss.

                      If your husband died due to electrical malfunction of the heart, something we HCM folks deal with, I do not believe CPR would have been able to save him. This fatal arrhythmia can be misnamed as a ”heart attack” but really is different.

                      There will be other people who respond who are more knowledgeable. For now Elaine rest assured, you did not contribute to your husband’s death. It was one of those sad events of sudden death due to HCM.

                      Thanks for sharing your pain and story. Many on this board will now be able to pray for you.

                      Peace,

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

                      Comment


                      • #12
                        Re: Horror Story Continues

                        Dear Elaine,

                        No. You can't blame yourself. Largehearted is correct. When someone with HCM passes out, it is a risk factor for sudden death. The doctor should have investigated why a presumably healthy, grown man, would faint.

                        Unless your husband had had an internal cardioverter-defibrillator installed, there was nothing to be done. This is the not slow kind of "blood can't get to the heart" coronary artery disease heart attack. This is the "heart stops beating entirely, almost instantly" kind and even if you were doing CPR, he was probably gone in under a minute.

                        He would not want you to suffer this way and there truly is nothing you could have done.

                        best wishes,

                        Sarah

                        Comment


                        • #13
                          Re: Horror Story Continues

                          Elaine,

                          I agree fully with Leon and Sarah. There was nothing you could have done to save your husband without defibrilation. Time was ticking and the damage would have been irreversible in the time it took the rescue to arrive, assess and defibrilate.

                          I am very sorry for your loss and your ongoing troubles.

                          I hope we have helped you and you are able to put some closure here regarding not blaming yourself any further.

                          Thoughts and prayers.

                          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


                          • #14
                            Re: Horror Story Continues

                            Hello Elaine. I just want to welcome you to the HCMA. Everyone who has answered you already is correct, there is probably nothing in the world that could have been done at that point to help your husband. Please don't blame yourself. We're here for any questions that you may have. Don't hesitate to ask.

                            Reenie
                            Reenie

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

                            Comment


                            • #15
                              Re: Horror Story Continues

                              Elaine welcome to our board and know you could not have done anything to help your husband, the only thing that could have helped him is an ICD and they are not a 100% but close, i'm so sorry for your loss, come here anytime you need to vent

                              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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