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Husband admitted to cleveland

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HCMfamily I'm a southern girl, a pastor's wife, a mom, and a freelance writer. My father-in-law and husband have both been diagnosed with HCM and we are awaiting tests on my children. Find out more about HCMfamily
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  • Husband admitted to cleveland

    Just an update for all who have been so sweet to share their stories and give us great advice. My husband continued to go downhill and began passing out. Dr. Lever was fantastic and got him admitted right away so we flew in this morning and he is on standby for a myectomy.

  • #2
    Re: Husband admitted to cleveland

    So glad he will now get treatment for his symptoms and will hopefully have a better life.

    The very best to him and your family for a speedy, uneventful recovery.

    Comment


    • #3
      Re: Husband admitted to cleveland

      Thank you! We are scared, anxious, worried, and hopeful all at once. I think we will feel lots better once we can talk to a doctor and find out more of what to expect. No one seems to know yet with it being a saturday! But the nurses have been amazing... So nice and helpful!

      Comment


      • #4
        Re: Husband admitted to cleveland

        I have not had a myectomy so really know nothing about the procedure but I can tell you that any upcoming surgery, especially open-heart, is scary and stressful. Most likely at this point you are more stressed and nervous than he is but wash your face (not saying it is dirty), put on some lipstick and that wonderful smile I know you have and talk about other things - Monday will come a lot quicker than you think.

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        • #5
          Re: Husband admitted to cleveland

          He'll have outstanding care, by people who know what they're doing and care about doing it well.

          I had a myectomy at the Cleveland Clinic almost 5 years ago, and I've benefited from it quite a lot. I still have HCM, but I can do many things I couldn't do before, am fairly active, have no chest pain, and no more fainting. Obviously we're all different, but it's likely that your husband will benefit a lot from the myectomy.

          They have a class that they run for family members of patients. My wife went to it while I was in the hospital and I think it helped both of us -- it helped her understand more about what was going on, so that we could discuss my medical issues more readily, and it also helped her understand a lot about the recovery process.

          As to the recovery process: some people have it easier and some have it harder, but almost everyone seems to agree that by about 4-5 weeks out of the hospital, they start feeling quite well. In general people have to still take some things (like lifting and driving) easy for a bit after that, but it becomes a lot easier once you start feeling well.

          Keep us posted about what's going on -- and know that we're here to offer support.

          Gordon
          Myectomy on Feb. 5, 2007.

          Comment


          • #6
            Re: Husband admitted to cleveland

            Thanks for keeping us posted and please know his HCMA cyber-family is there with you !
            Marc
            Diagnosed @ 48
            Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
            Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
            AICD - Valentines Day '08, Spark Plug replaced 11/14
            After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
            Quietly going insane . . .

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            • #7
              Re: Husband admitted to cleveland

              So glad your husband is getting the treatment he needs - wishing you both the best. Please continue to keep us updated.

              Linda

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              • #8
                Re: Husband admitted to cleveland

                I have not had a myectomy either, but am so glad your husband is in very good hands.
                Sister diagnosed with HCM 1987, died April 2012 of "unknown causes" as her family did not want autopsy
                My testing: 1987 and 1988 misdiagnosed with mitral valve prolapse
                Asthma diagnosis 1991
                Nephew diagnosed with HCM 1999
                Previous misdiagnosis "confirmed" 1999
                Cardiac arrest: 10/4/2010
                Induced hypothermic coma 10/4/2010
                ICD implanted 10/13/2010

                Comment


                • #9
                  Re: Husband admitted to cleveland

                  I'm sorry your husband's health deteriorated quickly, but I'm really glad he's in a wonderful hospital with staff who know how to deal with HCM. My thoughts will be with y'all while you wait.
                  Reenie

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

                  Comment


                  • #10
                    Re: Husband admitted to cleveland

                    My heart and prayers are with you during this time. Flown in, did you take globalcare?

                    Originally posted by HCMfamily View Post
                    Just an update for all who have been so sweet to share their stories and give us great advice. My husband continued to go downhill and began passing out. Dr. Lever was fantastic and got him admitted right away so we flew in this morning and he is on standby for a myectomy.

                    Comment


                    • #11
                      Re: Husband admitted to cleveland

                      Hi! Philip, our insurance refused to preverify the med flight so we flew commercial. Otherwise it would have taken 3 days. Surgery will be wednesday morning from what we were told tonight. His echo today showed his septum had increased from 1.9 to 2.6 since may and his gradient was worse as well. Any tips from those who have had myectomies that you would like me to share with him? Last minute advice?

                      Comment


                      • #12
                        Re: Husband admitted to cleveland

                        as the other members have said hes in the best place and dr. Lever is the best .he has taken care of me for the last 12years

                        Comment


                        • #13
                          Re: Husband admitted to cleveland

                          One thing I'd like to share from a patients viewpoint for caregivers - When we come out of surgery, don't be scared! We look horrible. There are tubes, devices, pumps all over us. It may look frightening but rest assured, it doesn't hurt and the GREAT CCU team keeps us nicely medicated so we really don't give a hoot. Keep upbeat, we need your support!
                          Within a day or sooner, we have tubes & things removed and move to a regular room. We still have drains, IV all over and wires sticking out of us, but we feel much better. The pain is not as bad as it looks! Nurses here get us on our feet within a day or two trying to get us walking! Imagine that! Allow the staff to push us to work harder every day. Praise us as we try to do simple things. Celebrate with us as we are allowed to shower (a monumental day in HCM recovery - nothing feels as good as feeling great AND clean!). He's in great hands, your support will greatly help him in is healing.
                          Marc
                          Diagnosed @ 48
                          Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
                          Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
                          AICD - Valentines Day '08, Spark Plug replaced 11/14
                          After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
                          Quietly going insane . . .

                          Comment


                          • #14
                            Re: Husband admitted to cleveland

                            Oh, that was the best shower I ever had............until I dropped the soap.
                            Onward and Upward !

                            Diagnosed 4/07 HCM with fixed & dynamic obstruction
                            Myectomy with resected cordonae tendonae 4/08 CCF
                            ICD 10/08

                            Comment


                            • #15
                              Re: Husband admitted to cleveland

                              He is doing amazingly well! They took him back at 3PM for the myectomy and he was finished at 8. By 10, the breathing tube was out and when I left him for the night, he told me he loved me and even smiled a little! Dr. Smedira said surgery went great and he removed around 9g of muscle from his septum. He said he should feel an immediate difference! On his echo prior to surgery, his septum was measuring at 26mm so I'm thrilled they were able to take out enough to get him some relief. We serve a mighty God and I am so grateful for the way the staff of CC has helped my husband already. For those with loved ones facing upcoming myectomies, it will all be okay! It is probably not going to be anywhere near as terrible as you built it up to be in your mind. That was definitely the case for me! Josh was resting comfortably and said he wasn't in pain because they are keeping him so well medicated!

                              Comment

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