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  • #16
    Paul,

    Its very difficult to gage your recovery based on my own experiences with a Myectomy, since your surgery ended up so complicated.
    But WHEN YOU FEEL READY...WALK. Your legs are as important as your heart. And use that breathing thing (if they gave you one).
    If your recovery becomes routine, it will be another few days till you feel 'better'. Then another week or two till you have a good sense of progress. 'Normal' is 6-8 weeks after surgery.
    The board is now very concerned about you. That means we must have updates.
    Fx

    Comment


    • #17
      FX, how long after your surgery did you start to feel more normal again? Two weeks? More? It is real slow going for me - maybe because of my complications, I don't know. But I am quite young and otherwise fit, so I thought things would be easier. It is now 12 days since the second surgery and 6 days since I have been out of a-fib. I'm praying that I feel better soon.

      Thanks again to the rest of you.

      Sincerely,

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

      Comment


      • #18
        Hi Paul,
        Listen my friend, don’t sweat the small stuff – and the big stuff is already behind you. Looking forward to feeling better will make the time seem like an eternity, and looking back it will seem like the time just flew by.

        Now’s the time to act like a billionaire – if you feel tired, go relax – if you don’t feel like doing something, don’t do it. In a few days you will start to feel more and more like doing things, and that’s good, but don’t overdo it. A few extra days and the things you find you have had to push to do will be a real snap, and all the tomorrows will be better then all the yesterdays.

        When I was still working I had some procedures done and pushed real hard to get back to the job, consequently it was months and months before I really felt good again. A year later I again had a procedure done and this time I was a tad older but a lot wiser. I took it real easy, and the first thing I knew I was back on top of the world.

        The bottom line? Take your time – and you’ll feel better in a hurry.
        Burt

        Comment


        • #19
          Thanks Burt,

          I'm taking your advice and praying that I feel better soon. But still feel wiped out and flat.

          Cheers,

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

          Comment


          • #20
            Paul,

            Sorry for the way things went for you with all the complications. I am hoping that once you start to feel stronger and things improve you will realize all the benefits from having had the obstruction removed and that your days ahead will be then filled with a better and improved quality of living. The rough ride is just for now . Try to just take each day a step at a time.

            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


            • #21
              Thanks for the words of encouragement Pam. I really can't express how appreciative I am of people like yourself who give much needed support when us HCMers are having a hard time. As Americans living Down Under in Australia, my wife and I have felt real lonely this last few weeks. Its been particularly hard on Kate, my wife, who also has to look after our 9 month old baby girl and go through the **** of seeing my so sick following my myectomy. Other than her Mom who is here, we have very little in the way of a support group. Makes us wish we were home in Seattle.

              Meanwhile, its two weeks tomorrow since my second surgery (i.e to stop the bleeding). The recovery has so far been very hard. The pain is very slight, but it is the fatique, weakness and pyschological impacts of the surgery that have been terrible. I guess I want to guage who out there has been through what I am going through.
              Age 38, dad of two young children, dx 1996, myectomy March 2005, a-fib issues, due for ICD soon.

              Comment


              • #22
                Paul,

                For what its worth, I did not begin to feel normal till 8 weeks post OP. Two weeks later I felt great running after the kids at Disney World.
                However, most people on this board would consider my recovery to be more difficult then a normal Myectomy recovery.
                Fx

                Comment


                • #23
                  Paul,
                  I'm glad the pain is minimal, for you. I think my recovery was a little slower than most, I did not fell "good" for about 8 weeks, my Dr did not allow me to drive for 10 weeks, I returned to work, after 3 months. It was about 4 weeks, I gave up my am nap & 9-10 weeks to give up my afternoon nap. For the first 2-2 1/2 weeks, I slept most of the time.

                  See, your recovery is "ahead" of schedule!
                  It's harder you & your wife feel somewhat isolated, but we're all here for you, you just don't see us!

                  I did start going out- dinner, grocery (ride in cart) about 2 1/2 weeks. I forced myself to walk every day, beginning when they got me up in the hospital. Walking is vital. Do you plan on going to Cardiac Rehab?
                  RONNIE

                  Comment


                  • #24
                    Hi Felix and Ronnie, did you feel utterly exhausted for the first few weeks? What about feeling the blues? That's how I feel. Its now exactly two weeks since the emergency surgery and 15 days since the myectomy.

                    Cheers,

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

                    Comment


                    • #25
                      I felt worse then exhausted. I felt nauseous until we found out I had OD'd on potassium.
                      I was down in the dumps, and Sandy would say I was very grouchy, but I didn't really feel depressed.
                      Just a suggestion, but throw some funny movies into the DVD player. Old School, Marx Brothers, Shrek. Just something that will make you chuckle.
                      Stay away from Brian's Song or Schindlers List for awhile.
                      Fx

                      Comment


                      • #26
                        Paul,

                        You will feel very very tired for a while. A myectomy is a major insult to the body, and you had a complication or two to boot. You need to be very kind to yourself right now, and let your body rest as much as it wants, even if that means napping every other hour, or all the time! We all went through that, trust me. It doesn't mean anything is wrong, it simply means that your body is spending all of it's energy right now on the healing process.

                        Depression is not uncommon, and if you look through previous posts from various myectomies, you'll see that quite a few folks have dealt with that issue as well.

                        Rent lots of funny movies, lay on the couch, give yourself permission to be a total bum, and eat when you feel comfortable in doing so. You probably don't have much of an appetite right now, but realize that while your body is healing it needs lots of nourishment. Keep that pillow handy to hold to your chest when you need to cough, sneeze, or even have a hearty laugh.

                        Please take care and post as much and as often as you want. We know what you're going through and will help in any way we can.

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

                        Comment


                        • #27
                          Felix and Jim, thanks for the support on this. Its good to know that I'm not the only one who has been through a hard time in their recovery. Felix, I read through an old thread about your recovery and realise you had a terrible time with nausea etc. The only thing slightly abnormal for me is that my calcium is now slightly elevated for some reason. I did have slighly low heamoglobin levels, but as of the last blood test, my heamoglobin is now approaching normal.

                          I wonder if it is possible that I feel so wiped out also because of the fact that I had to have so much blood. I have a friend who is a GP and he tells me that simply having someone else's blood places great stress on the body and that it takes months to replace that blood with your own. This could be a factor for me?????

                          In the midst of all this I get encouragement from the fact that people like yourself are now well and have come through and are looking back at it. I guess I just have to live through this part of my recovery and hope that the extreme fatique subsides ASAP and I can get on with my life. But as you both know, its really hard to see light at the end of the tunnel when you are in the midst of pain. It just suck you in......

                          I just jope that in a few months or so I can be of help and reassurance to other people who are going through what we have - just like you guys are doing now.

                          Many, many thanks from Down Under,

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

                          Comment


                          • #28
                            Paul

                            I just want to say hang in there it will get better really, i thought i would never get over the surgery but i did, the only thing that i have left is a little discomfort in my chest when i cough or sneeze, but the doc said it is scare tissue and as you have read i'm sure is that i'm heading torwards a heart transplant but i'm among the 2% that go on to have a transplant my heart is just too stiff, But please hang in there you will get better and you have all of us here cheering you on

                            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


                            • #29
                              Shirley,

                              I know you are also going through a lot and have to deal with the prospect of a heart transplant. But I feel everything will work out for you. When will you be actually put on the transplant list?

                              When was your myectomy? Did you feel totally exhausted after it and if so, how long did the exhaustion last? I just can't seem to shake the tiredness.

                              Cheers,

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

                              Comment


                              • #30
                                Paul,

                                Sorry to hear you had such a rough time.

                                After Myectomy, it is hard to sleep for quite a few weeks. It does take a couple of weeks to start to feel better. In your case that may take a few extra days. But you will get to that point faster than you think.
                                FX is right, WALK WALK & WALK some more.
                                You will find that there will be days that you feel 100% better than just the day before.
                                At that point you will be amazed at how rapidly you progress.

                                Hang in there,
                                Stuart Schwartz
                                Myectomy 8/31/04
                                at Cleveland Clinic
                                Cleveland Myectomy Club
                                August 31, 2004

                                Comment

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