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Exactly one month since myectomy


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  • Exactly one month since myectomy

    Hi guys, time for a one month update on my recovery.

    I am finally starting to feel better, just as many of you said I would (thanks Jim, Pam, Dan, Felix etc. - sorry if I missed anyone else who gave me advice). It has been - without doubt - THE MOST difficult and traumatic experience of my life. Of course, things may have been different if I didn't have to go back in for emergency surgery to stop bleeding the day after my myectomy (not to mention 5 days of A-Fib). For those of you who will have a myectomy in the next month or so, don't be put off because my myectomy ended up being very complicated and not usual. But be aware that it is a major operation and that it will take a number of weeks of recovery before you start to feel better. But just knowing you will get better should be a major comfort.

    Anyway, my energy has improved significantly - my energy levels are perhaps 75 - 80% of what they were prior to my myectomy. The blues (depression) are largely gone and I have not had any noticeable episodes of angina. I have been doing a bit of walking each day (in my neighborhood and at the mall). Exercize definately helps improve energy levels.

    On the downside, there are a couple of times when I have felt a bit of SOB - nothing serious, just that old sensation of not been comfortable while breathing. This may be a temporary thing, or it may that the surgery has not helped get rid of this problem. I've read that 30% or more of myectomy patients still have SOB (largely because of diastolic dysfunction, even thought the pressure gradient may be gone).

    I am also having a couple of nasty arrhythmias each day, which make me dizzy.

    But on the whole, I am making progress and feel much better than one or two weeks ago. I will just be happy to get back to how I was prior to the surgery and the whole post-op nightmare: any improvement of symptoms is a bonus!!

    More updates will follow in the coming weeks.

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

  • #2
    I'm so happy to hear that you are finally feeling a little better!!! I pray you continue to do better each day.


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


    • #3
      Glad to hear that you are beginning to recover. Really hope that it continues for you.


      • #4
        Great to hear you are turning the corner.

        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

          Good for you, I'm very happy for you, now things will start getting better and better

          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


          • #6
            Thanks guys. I will be making regular posts to keep you all updated on my recovery.


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


            • #7
              Hi Paul

              I have been following your recovery progress and I am so happy for you. I am so happy you are feeling better.

              The worst is over and gone and now the good stuff is here and more is coming for you.

              Like I said, I am so happy for you!!!

              Continued prayers for the best recovery.


              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.


              • #8
                Good for you Paul. Glad to hear you doing so well...

                myectomy 05/17/04
                " Real Courage Is Being Scared To Death But Saddling-Up Anyway "


                • #9

                  Harry says to say hi and we are both so glad you are starting to hit that road to recovery. I really believe the blood loss you had is a significant cause in your slow recovery. Harry's appointment is on Thursday and I hope to have a date for the op by then, I'm so excited and not put off in any way by what's happened to you. Complications are a sad fact of life, I've been through it and I am fit and strong today (one thing about this kinda stuff, boy do you learn what's important in life).

                  Leanne and Harrywhohasanenlargedheartinmorewaysthanone (sheesh I love that man)


                  • #10
                    One of my friends once told me what HCM was.

                    I live in Orlando you know Disney and Universal.

                    He said I have reverse Grinchitis.

                    You know the heart was two sizes too small now its two sizes too big!

                    Mary S.

                    Sorry for the Cheesiness


                    • #11
                      Mary, we need a bit of humor around here - even if it is cheesy!


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


                      • #12
                        NO cheesiness allowed--too much sodium and way too many grams of fat! Gotta think about the diet, you know.

                        --Living life on the edge .. of a continent!
                        Charter member: Tinman Club


                        • #13
                          Time does heal! I am gald you are feeling better. May you continue to improve!!

                          Big Hugs from NJ to Ausyland!

                          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)


                          • #14
                            Hey but the cheese is low in carbs. And besides my doctor said I could have sodium so there

                            Mary S.


                            • #15
                              Now I'm jealous--it really hurt when my daily cheese allowance had to go away. Too much sodium and I turn into a zeppelin.

                              take care,
                              --Living life on the edge .. of a continent!
                              Charter member: Tinman Club