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Myectomy at 10 weeks out.

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  • Myectomy at 10 weeks out.

    Aren't you glad that I didn't add to that large thread?
    So How M. I. Doin?
    Basically, I am doing much better. My sternum is still a little sore, especially when I lay down. It hurts when I sneeze and Atlanta is still in the middle of pollen season.
    My energy level is roughly 95% of normal. When I went back to work, for the first 10 days I was on a half schedule. The next week I worked 37 out of 40 hours, and last week was the full 40. I haven’t had a great need for naps.
    For the last two weeks I have felt a small resumption of HCM symptoms. I have felt a smaller version of the chest tightness which sometimes radiates down my left arm. It is not as strong as it used to be, and instead of happening EVERY night, it only happens 2-3 times a week. However, I have noticed that it seems to correlate to those times when “I don’t keep hydrated” (nag Lisa nag).
    The real test will be the next few days. Some of you may remember that my family is heading down to Disney World, to be followed by a cruise. 1 day at MGM Studios, 1 day at the Magic Kingdom, and a final day at Animal Kingdom, with two small kids. Should be a good indicator of how HCM will affect me down the road. I bought a special water bottle holder that will keep the H2O cool. I think I’ll name it Lisa.
    I have a rather funny scar. It’s about 8 inches long. The top half is healing nicely and even beginning to fade. The bottom half is red, raised, and itchy. I guess I’ll just keep applying the scar crème. I’ll probably keep my shirt on for most of the trip. Pixie dust and myectomy scars don’t mix well.
    So I’ll be incommunicado for the next 10 days. I’ll miss the banter and info. Please, no ER trips for anyone while I’m gone.
    Fx

  • #2
    Re: Myectomy at 10 weeks out.

    Felix, Have a great trip! Sounds like you have the rules down. Yes, keep the scar protected from the sun. An itching scar is one thing, an infected incision is a totally different thing. If there's any question, have your doc check it one more time before pools, ocean, etc. Your little ones must be so excited! I know it's been a long wait for them. Best wishes - Linda

    Comment


    • #3
      Re: Myectomy at 10 weeks out.

      Felix,

      Have a wonderful trip! Remember that kids will have a lot of fun if they don't get too tired. Small things are much more important than big ones. So, if you are tired, they probably are too, but would never admit it. So, stop and get an ice cream for them and hold them and tell them how much you love them while you wipe off the ice cream. Or, play "I spy" instead of running for the next ride. It will enrich their enjoyment of the new sights more than another ride. And more importantly, they will forget the ride, but never forget the time with you.

      Have a great time!

      Rhoda

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      • #4
        Re: Myectomy at 10 weeks out.

        I'm so happy that you're doing so much better. Have a great time in Mickey Land.

        Reenie

        Reenie

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

        Comment


        • #5
          Re: Myectomy at 10 weeks out.

          Felix,

          I hope I get to see you down here at the Mouse. Too bad your not going to Epcot it's the flower and garden festival. Lots of great flower power bands like Davey Jones, Starship, the turtles, Herman's Hermits, and Little Anthony and the Imperiels?

          I PMed my number to you Call me

          mary

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          • #6
            Re: Myectomy at 10 weeks out.

            Felix Sandy and kids, All of you have a wonderfull trip and great time. Take it slow in the heat down there and stay well. Give my regards to the mouse. 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


            • #7
              Re: Myectomy at 10 weeks out.

              Felix

              I hope you and your family have a great time, rest when you need to and keep that water at your side and have fun. What date did you have your myectomy i had mine on Febuary 23rd and i still have some pain on the right side of my chest and alot of fluid retention but i also have CHF, well HAVE FUN GUY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

              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


              • #8
                Re: Myectomy at 10 weeks out.

                DRINK DRINK DRINK

                OR shall I say NAG NAG NAG



                I am thrilled to hear that you are doing so well! Have a great trip and ENJOY yourself.

                Lisa

                PS told ya so!!!!!!!!
                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)

                Comment


                • #9
                  Re: Myectomy at 10 weeks out.

                  this is sandy (though logged in as felix).

                  Many times I was doubtful if felix would be able to handle this trip, but
                  it does seem like he will be able to. Last Sat we had a Bar mitzvah to go to and lots of other stuff to do. Pre surgery and even just a few weeks
                  ago he would have had to take a nap or lay down around 4pm after
                  the party. this time he was ok. We even made to the mall that night
                  with our youngest!

                  the true test will probably be in Nassau. When we were there in Jan
                  we did a walk on the beach adn felix had a lot of SOB and could
                  barely do that walk. We are going to do it again next tuesday. I have
                  full faith that he will not have any problems now!

                  the recovery was very very hard. But if he can survive this next week
                  with energy and have fun with the whole family, then it was well worth
                  it. Hindsight, I would have either hired help from the start instead
                  of tryign to do everything myself with felix, the house, the kids, or arranged for myself and the kids to go away and bring in a home nurse.

                  I want to thank everyone on these boards for all the support I got while
                  we went thru this. I just read about Dylans recovery and that is so
                  remarkable! I dont get to meet you all in june, but I am sure felix
                  will come back with lots of neat stories.

                  now of course, I am under the weather, and have the start of a bad
                  cold right when vacation is beginning.

                  sandy
                  Fx

                  Comment


                  • #10
                    Re: Myectomy at 10 weeks out.

                    Sandy, I hope you can get over this cold and feel 100% for your trip!

                    Reenie
                    Reenie

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

                    Comment


                    • #11
                      Re: Myectomy at 10 weeks out.

                      FX, good to hear you are over the hump in your recovery. Expect things to continue to get better, I'm sure they will. Enjoy your vacation with the family, relax and have fun, you all have earned some needed R&R. But remember, don't push yourself too hard, especially trying to test yourself to see what the differences are pre and post op. You are still recovering. Watch the sun, drink, drink, drink etc..... See you back on the board when you return. Steve.

                      Comment


                      • #12
                        Re: Myectomy at 10 weeks out.

                        I'm not quite sure who needs the vacation the most... Felix for having the surgery... or Sandy, for putting up with your grumpy butt during your recovery. Either way... I hope that all of you have a wonderful vacation and get a chance to live your lives as it was before the HCM. You both deserve it.

                        Lots of love,

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

                        Comment


                        • #13
                          Re: Myectomy at 10 weeks out.

                          Sandy,

                          There are studies that show that we don't tend to get sick from colds or flu or stuff like that when we have a big stress, but we do get sick aferwards. Our bodies marshall the white cells during stress, but when the stress is over, we get sick. So, I think YOU are the one who needs to rest now!!! Don't be afraid to let Felix do what he can. Then both of you rest when he can't.

                          Rhoda

                          Comment


                          • #14
                            Re: Myectomy at 10 weeks out.

                            we are back and it was a success!!! I.e. felix was able to function normally without the affects of HCM! We did that walk and I had worse
                            problems since I had done my first pilates class the day before!.

                            I will let felix post more about it though.. He drank plenty of water
                            and even toasted one bottle to Lisa

                            I got thru with my cold. I ended up passing it to my daughter and
                            now felix might be catching it but the wonderful vacation is over and
                            we will resume our normal lives again.

                            sandy
                            Fx

                            Comment


                            • #15
                              Re: Myectomy at 10 weeks out.

                              Well now that is great, so the surgery was a good choice for Felix, iam so happy for him and may everyday get better and better

                              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

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