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  • #31
    Paul

    It took 6 weeks to 2 months for me to feel like getting up and doing something around the house and myectomy was Febuary 23rd of 04 so it has been just over a year, had it done on the 23rd and was home on my sons birthday March 2nd I had Oxygen problems and still do, i sleep with oxygen and if i need it during the day and to this day they don't know why or what happened and i had massive fluid on me also i weighed 175 going into surgery and 230 something coming out and for days afterwards, so i do know what miserable is they have me at 3 liters now where i was on 6 liters, but hang in there and come talk to us anytime day or night ok

    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


    • #32
      Paul ,

      Like everyone has said it does vary and it does take time. It was 12 weeks before I could feel well enough to be out and about for a short time. I remembered sleeping like I was dead. Rising from my bed felt like I was pulling myself out of cement. It got less and less as time went on. I too had the a-fib while in the hospital and then after a week home. Amiodorone worked in the hospital , cardioversion the second time. I went back in a third time at 7 weeks post for drainage of fluid in my lung. It was a rough time but a time that finally passed . Try to take each day and do it that way don't go on what you think should happen just on what is happening. Try not to put your recovery on a graph. Your body has had a very large trauma and then it was further assaulted by complications.

      Hang in there . we are all here to support you. Brighter days WILL come.

      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


      • #33
        Hi Pam and Shirley.

        Did either of you guys experience SOB shortly after your myectomies? I can't be sure, but this last day or two I could swear there is that old breathing pressure sensation. Do you know what I mean? When I was in A-fib in the hospital I was having some SOB while lying down. This is slightly different and I can't tell if its simply just in my head or if the old SOB has returned.

        When I was in hospital my surgeon claimed that my pressure gradient was now only around 10 and that he knew that my heart function had improved after the myectomy, because it was handling continuous A-fib so well. But my deepest fear is that the SOB will return. I know this is possible because of diastolic dysfunction - Shirley knows all too well about this.

        Best wishes,

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

        Comment


        • #34
          Paul, I posted in the other thread about this. I think it is still early , read my post there.

          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


          • #35
            Paul, if this continues please get checked out. Some of our myectomy vets have had problems with fluid around the lungs shortly after surgery. Pam, Bettie, and Lynn did but I'm not sure of others.

            Reenie
            Reenie

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

            Comment


            • #36
              Hi Reenie,

              As it turned out, I ended up in the ER again yesterday after the cardiac rehab nurse noticed I wasn't looking so good. I told her I was just having a migraine, but because I was having visual disturbances (which is a sign of a stroke), she insisted I go to the ER. They did a whole range of tests and - on the orders of my surgeon - an echo. I've written about all this on another thread ('myectomy recovery'), but in short everything appears normal. My surgeon was in touch with the ER doctor and was concerned that I might have some cardiac effusion (fluid in the heart sack). However, all is apparently well.

              I'll post more in the days and weeks that follow. Hopefully then I will be able to report good news for a change!!

              Cheers,

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

              Comment


              • #37
                Hi Paul. I think about you daily and say a little prayer for you each time. I hope that you're on the upswing now and can't see it yet. I'm sure in the next few weeks life will get better for you. Hang in there.

                Reenie
                Reenie

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

                Comment


                • #38
                  Thank you so much Reenie. I really do value your support. It is a very tough time for me right now. Logically, I know that this will all be behind me sooner or later. I am just hanging in there waiting to get better. Its 3 weeks tomorrow since the second surgery. It feels like 3 months though!
                  I've always wanted to slow time down to enjoy my life but it always seems to fly. However, right now it has slowed down - its amazing. I just want to put this whole thing behind me and feel normal again.

                  With deep thanks,

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

                  Comment


                  • #39
                    Paul,

                    I remember that feeling so well when I was having my complications. I use what I learned even today whenever there is something to go through , sort of a limbo time where life just is moving around me.

                    I remember I would stare at the clock at intervals and pray to have time move forward faster because I knew that time would make a world of difference in my getting to feel more like myself. A lot of my energy was sapped during the process just trying to be patient to let time and my body do what it needed. I had to keep my mind away from it( limbo). It was so evident that my doctor( Dr. M. Maron ) was more then a little concerned. He saw that (away) part of me and one day verbalized his concern for my emotional distance. I informed him that " I " was still present , but i needed to do this to go through it. I gave him the analogy of an indian woman going into the woods all alone to give birth . ( It is a walk that anyone who has been through this goes totally alone on... I think it was a bit much mentally at times.) He laughed and said , I understand but would you please just smile so I know Pam is there . We both laughed and I made a point of showing him and others that I would be back soon. It is so important to keep the spirit positive and hopefull.

                    I do see flickers of Paul coming back in your posts. I know you will continue to heal and feel better and better. I know this is not the type of slowing down you were thinking of when you first contemplated it. You are in my thoughts and prayers.

                    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


                    • #40
                      Thanks Pam!

                      I'm just hanging in there taking each day as it comes. The days are passing so maybe soon I will wake up and think, "wow, I feel good today".

                      Take care Pam.

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

                      Comment


                      • #41
                        Paul-
                        Thought I would join the choir of "Hang in there". I remember thinking , "I wish it were next week or next month already, so I could feel better". I would walk into my kitchen (to get a change of scenery & sit zoned out for an hour or 2. That's just your body trying to get thru the trauma it's been thru. Plus the Bypass machine does strange things to you.
                        I bet you're a bit of a perfectionist & very demanding of yourself, in general. You're probably saying "hey, lots of other people have been thru this & they felt better than I do!" WE ALL FELT CRUMMY> give yourself a break. You don't have to be perfect & you will feel better, very soon (just not soon enough)

                        I was sob after & it made me nervous too, but as long as your doc says it's ok, accept that. I still feel sob, but it's never as bad as it was. I remember that I had tons of fluid & it took several weeks to disapaite. I remember looking at my legs in the hospital & cringing, each of my legs was bigger than my whole body & my hands were huge also. I'm a tiny person, but after the Myectomy I felt as wide as I was tall. I continue to have fluid retention problems, I take 6 Bumex (lasix no longer works) a day & twice a week a Zyeroxolin booster twice a week. I remember, in the hospital every day they woukld wheel in the scale for me & write my weight on the blackboard & every day I got heavier! Good thing they wrote it in Kilos & I could not convert it to lbs. I eventually did loose the excess fluid. You will too.
                        Be patient - you are the patient.
                        RONNIE

                        Comment


                        • #42
                          Yeah Paul,

                          I hear you are joining the Pills and Pistol club with the rest of us,

                          First you take the pills -
                          Then you pistol the next time.

                          But now is the time to rest and heal. Just sit there on Uranus and contemplate the cosmos - until you settle back to earth.

                          (Boy, where is that oxygen tank when you really need it?)
                          Burt

                          Comment


                          • #43
                            Hey Burt,

                            I've got some extra oxygen at home do you need it sent? Guess, its my day to watch you

                            Paul, hang in there. I've never had a myectomy but I've had lots of bad things to over come and it will happen one day.Things will get better. TRUST ME!

                            Mary S.

                            Comment


                            • #44
                              Nice one Burt! Don't really get the pistols part though.

                              Ronnie, when did you start feeling like you had your energy back after your myectomy?

                              Cheers,

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

                              Comment


                              • #45
                                OK Paul,
                                I’ll grant you that you’re somewhat distracted at the present time, so I won’t hold anything against you, but your problem is that you’re reading pistol as one word.

                                Well, maybe the use of that term isn’t so common among you Aussies. I really take you for good bloke and not a drongo. (Now I left the Yanks in the woods.)

                                Does anybody speak English anymore?

                                Hooroo mate,
                                Burt

                                Comment

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