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post myectomy


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  • post myectomy

    Hi everyone. What follows is basically a summary of an email I wrote to Laurie after she emailed me following my myectomy, which was on the 19th of this month.

    I have just returned home after 9 days in hospital. Don't have the energy to go into too much detail right now, but there were a number of complications and I almost died. The initial surgery went well, but they soon realised they had ruptured a blood vessel in my heart - I lost 10 units of blood and had to be rushed back in for emergency surgery to repair. To cut a long story short, the last 8 or so days have been **** - the most nightmarish experience imaginable - I was fighting for my life holding on in the days following surgery.

    I also went into continuous Atrial fibrillation which lasted 5 days on end - it was only ended by 'electro cardio reversion' (I was shocked out of it!).

    I am very tired and traumatised right now and only time will tell how sucessful the surgery will prove. These first few weeks are still critical and I get the feeling I'm not quite out of the woods yet. I do know, however, that my gradient has basically been abolished, so in those terms, it looks good.

    Will write more in the days that follow and as I start to feel better.

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

  • #2
    Oh my, Paul! I'm sorry you've had such a rough time with your surgery. I'm glad to hear you are now home and I hope and pray that the rest of your recovery is uneventful. Rest as much as you can and we'll be here awaiting the rest of your story when you have the energy to share.


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


    • #3
      Paul, You are in my prayers as you continue to recover. I sincerely hope you progress rapidly from this point on without further complications. Please keep us posted, best wishes, Linda


      • #4

        Good Lord! I'm so sorry to hear that things went badly for you! You really have been to **** and back my friend, but thank God you pulled through this mess and are able to to tell us about it. I'll be praying that the rest of your recovery is as smooth and uneventful as possible, as will everyone else i'm sure.

        It must be small comfort to you right now as you try to recover from all of this, but focus on that zero gradient you've got going for you now and the fact that when all is said and done, you're going to feel better than you have in a very long time. The worst is behind you now!

        Please take care, and update us when you can.

        "Some days you're the dog... some days you're the hydrant."


        • #5

          You are definetly in my prayers and i do hope nothing else happens, you have been through enough

          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

            Oh Lord, I am glad you are through the worst of it. I am so sorry dear.

            I can see how you would be traumatized. That whole ordeal sounds very traumatic

            As Jim said, please now try to focus on non gradient, that is important in the long run.

            I am praying for you and sending you healing thoughts. Please rest and take good care, and when you can, please let us know how you are doing.


            Gentle Hugs,

            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.


            • #7
              Hi everyone. Many, many thanks for all of your support.

              This is my third day home from hospital and the ninth day since the emergency surgery. Yesterday was hard - I felt very tired, yet couldn't really sleep properly. Also feel rather flat and tired again today. Is this normal? When can I expect to start feeling my old self?

              Best wishes,

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


              • #8

                Sorry to hear about all the trouble you're having. Being home will make you start feeling better. It will be awhile before your back to your old self, but you should start seeing a difference week to week. Each day will be better than the one before. Hang in there...

                Real courage is being scared to death but saddling-up anyway...
                " Real Courage Is Being Scared To Death But Saddling-Up Anyway "


                • #9
                  Paul, You've been thru so much, I'm surprised you've had the energy to spend updating us here on the message board. It will take longer than 9 days. You are recovering from 2 major surgeries with major anesthesia each time, and a major blood loss. I do hope you are able to rest well at nite, and take plenty of rests during the day. Wishing you the best, Linda


                  • #10
                    I'm so sorry you've had such a rough time. Remember, you're healing from 2 Major Surgeries, so it will take time. In about a week, you should begin to feel Human, but it really does take most of us, 6-9 weeks to feel "more normal". Don't be hard on yourself, don't over do, let your body (and your mind) heal from the trauma.
                    If you are having difficulty sleeping, why not tell your Dr & get something to help. There is no shame nor worries about addiction, if you take something now. I took "Major" pain pills after, both my "Open Heart" surgeries, after a couple of weeks I stopped & had no consequences. Now is the time to treat yourself more gently-you'll heal much more quickly, if you do!
                    My prayers are with you.


                    • #11
                      Paul -
                      From an American to the Australian - a Norwegian word UFF DA!

                      Your case clearly shows how important it is to have a procedure in an experienced center - I know they do not do myectomies with great regularity in Australia - I wish they had more experience and then maybe you could have avoided some of those nasty complications.

                      I hope you are on the mend - emotionally and physically.

                      Best wishes and a gentle hug!
                      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)


                      • #12
                        Dear Lisa,

                        To be fair to my surgeon here in Melbourne Australia, I should clarify what went wrong in my surgery and that it was unrelated to any lack of experience with the procedure. In fact, the complications I experienced were unrelated to the actual myectomy.

                        From my understanding of what went wrong, one of the temporary pacing leads ruptured a blood vessel in my heart. This was a freak acccident and was something that could have happened in any heart operation, including bypass surgery. My surgeon claims that this is the first time it has happened to him - in any operation. Thus, I do not feel this was related to any lack of experience on my surgeon's part. He has in fact visited the Mayo clinic in hte past to refine his procedure.

                        The actual myectomy was a success. A TOE carried out at the end of the operation revealed that my gradient had been reduced from over 70 at rest to around 10. As you know, there is also the likelihood that my heart will remodel and the gradient be further reduced. In addition, although the surgeon had to remove a large amount of tissue, there was no damage to the heart. My mitral valve, for example, is fine.

                        I hope that this clearsup what went wrong during my surgery.

                        Meanwhile, I am struggling through each day. I had no idea that the recovery would be so hard. I am still exhausted and emotionally down. I'm praying for the days to fly by so I can put this traumatic experience behind me.


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


                        • #13
                          Hi Paul,Im sorry that you are having such a difficult time .I cant imagine how hard this must be for you.Your much stronger than Iam. I was a big baby just having an angiogram.I too will pray that this period of recovery speeds by without any further complications.Just hang in their one day at a time,and you will come out that other side.take care mike
                          One day at a time.


                          • #14

                            Hang in there buddy, may each day get better and better for you.

                            "Some days you're the dog... some days you're the hydrant."


                            • #15
                              Hi Paul,

                              Good wishes to you from me, too. I can't imagine going through what you have.

                              I hope that you can hang in there and just keep improving.



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