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Myestomy, EXACTLY One Year Out


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  • Myestomy, EXACTLY One Year Out

    One year ago to the minute that I’m writing this, I was on a heart/lung machine with Dr. Rastagar slicing my septum.
    I’m sure the first question this board has is “how am I doing?”
    I would give the results an A-.
    I have 10 times the energy I had pre-op. Although I still can get short of breath, it is not the multiple times a day that it once was. I no longer have days where getting off the couch is nearly impossible.
    I still get some HCM symptoms, but they are rare. For instance the last major outbreak was the night of Thanksgiving. Of course, I had just had a heavy meal, a 7PM cup of coffee, 2-3 glasses of wine and little H2O.
    So if I’m careful, I have no symptoms.
    The only thing that’s different between now, and before my HCM symptoms first began to appear 3 years ago, is that I do not have an abundance of energy. I can walk, walk, walk, and walk some more, but I can’t run. I tried riding a bicycle on vacation two months ago, and I had problems.
    I’ve gained back all the weight I lost from the operation, and I blame my inability in do moderate to strong exercise. With spring nearby, I’m going to try building up my exercise slowly, so we will see how it goes.

    The impression I received from the board during my recovery was that I had it tougher then the average Myectomy. Especially if you compare it to Stuart’s Myectomy from Heaven. But the funny thing is that it was much easier then I expected it to be, which tells you a lot about my state of mind pre-op.
    My biggest fears before the surgery were:
    1- The possibility of death. Ok, I knew that the odds were highly unlikely, however it still was probably the most dangerous thing that I have ever done (and that includes riding motorcycle through 5 New York City Winters).
    2- The ventilator tubes. This actually turned out as bad as I expected it to be. However, a lot of patients do not even remember this part. I do, it sucked, but it only was for a few hours.
    3- The foley. This actually was a breeze. No pain, no discomfort.
    4- The drainage tubes. 20/20 hindsite says that this should have been my number one concern because it was a terrible experience that should not have happened. Very painful, but nothing that a morphine drip (which I eventually got) couldn’t handle.
    There is no way to tell when these tubes come out, but they get progressively more painful as they stay in. Anyone contemplating this surgery should clarify your desire for the morphine before they start the surgery.

    Otherwise, the hospital stay, and my recovery at home were what I expected. My first two weeks back at work were part time, but 10 weeks post-op, I was chasing two kids through Disney World. The brain fog from the heart/lung machine was over after 3 months.
    Although lately on these boards there has been some positive feedback concerning Alcohol Ablations, I have never regretted my decision for surgery, because I have a better and more detailed prognosis for the future, then if I was one year out from an Ablation. Sure it was a tough few weeks, but I have peace of mind that an under 50 year old ablation patient wouldn’t have.
    Thanks go out to these boards, but especially to:
    • Lisa, a truly amazing, intelligent person.
    • Doug, the first Myectomy at NEMC. He had similar fears before his surgery that I had, and helped take the edge off of mine.
    • Pam, who explained how tough it is to wear a bra after a myectomy despite my having no need for that information.
    • Marty Maron, a smart, caring Doctor.
    • Dr. Rastagar, who took his natural skills at cardio-thoracic surgery, and became one of the best in the world at a Myectomy. He probably does 50 bypasses for every Myectomy, but I think he really enjoys the challenges of the Myecomy.
    • Stuart, who actually listened to my ravings last June and despite them, got himself a Myectomy anyway.
    • Jim who made me laugh so many times before and after my surgery (and before and after his surgery). Remember, you owe me a %#^&$&^ happy dance!

    I hope to see everyone in June.

  • #2

    I'm so glad you are doing so well, mine will be one year next Wednesday, I'm still convinced if i didn't have the surgery i would not be here today, i just wish it had done the trick but, i go to another doctor on the 28th to see about getting on the list still again, Hopefully whatever Dr. Maron says to this doctor will convince them to get me on the list so please keep your fingers crossed for me and again it is great that you are doing so well and happy Anniversary

    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


    • #3
      I'm so glad to hear that you're doing so well still. We don't hear as much from you lately, but I chalk that up to you being too busy having a 'real' life to come update us. I hope the next years to come will be as good as the last!


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


      • #4
        from his wife....

        Well the mind fog does take away from some of the facts )

        lets not forget the personality change, that was not exactly
        for the better.

        Overall life is very different than before the myectomy. Basically
        HCM had taken my husband from me. For any activity I wanted
        to do as a family, I had to assume that he probably couldnt do it.
        Childcare on the weekends and at night was pretty much
        done by myself. Now I have my partner back. The kids are
        happier too.

        yes, I would like to see him drop the extra weight. But I dont
        attribute his lack of exercise to HCM at this point, but just
        time and priority.



        • #5
          Okay you two... take it outside! LoL.

          Felix, it was great hearing from you and i'm glad that you're doing so well on this your one year anniversary. I'm afraid though that my sense of humor has temporarily left the building of late, but i do hope to resume my regularly scheduled programming soon. As far as the happy dance? Well, we'll work something out. Bring plenty of dollar bills with you... i'm trying to work my way through college here.

          Take care,

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


          • #6

            I am so happy for you, it was not an easy road for you at the time. I have to laugh because one thing I said to you and I say to so many facing myectomy is 'in one year you will be very happy you did it'. When I said that to you - you were not very 'open' to this thought and really challenged me and kept me on my toes pre and post your procedure.

            Now that a year has pasted any your quality of life is so improved- - well I could not be happier for you, your wife and your children!!!

            I would like you to write up a story for the next newsletter - I think your story will be extremely helpful to many.

            Best wishes,
            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)


            • #7
              Felix and Sandy ,

              So happy the road for you straightened out . One year makes a lot of difference and allows us to see how and which improvements made the biggest impact in our lives.

              I still feel you guys are at a loss without the post sugical bra .. yes I had to mention it again. Hey maybe I should invent a uni-bra for men and women for post myectomy , one that the hugging pillow could slip into.. oh I digress.

              Best wishes for continued well being.

              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


              • #8

                Happy anniversary. It's good to hear your doing so well. My ann. will be May 17. take care and keep the good health...

                " Real Courage Is Being Scared To Death But Saddling-Up Anyway "


                • #9

                  WHAT is the story with the bra? Apparently i missed this little ditty before. Please explain, and of course provide ordering details, as you never know when a post-myectomy uni-bra might come in handy.

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


                  • #10
                    Oh Jim,

                    I knew you'd see this. I guess it goes back to when I had phone conversations with Felix and Sandy , prior to his myectomy. I told him how being a woman and wearing a bra is very , very helpfull after surgery and it is too bad they do not put a sports bra or something on the guys.
                    I woke up in the TCICU post myectomy and whalla I was wearing a comfortable, very supportive , front opening , over the shoulder bolder holder That item was my buddy for many months( OF COURSE I WASHED IT...GEEZE)

                    So naturally I thought what a great thing it would be to invent a uni - bra to also incorporate a pocket for the hug pillow , or that could be an accessory to the bra. Oh well it seems my mind goes where no man ( woman ) has gone before.

                    That's my story and I'm sticking to it.

                    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