If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

First Walk Outdoors

Collapse

About the Author

Collapse

JillC RN for over 40 years, MS degree in Respiratory Nursing, Worked surgical open-heart ICU for 18 years in Chicago.. After years of symptoms finally diagnosed with HOCM in 2006. I retired from nursing 2012 due to HCM and had septal myectomy at Local hospital 2013, Redo myectomy Mayo Clinic 2014. Now doing well. Find out more about JillC
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • First Walk Outdoors

    This forum is the only place I know where HCM baby steps are truly appreciated. So I decided to post my little victory.
    I took my first outdoor walk this afternoon.....13 days post Myectomy Re-do....and I can FEEL the difference already.
    I had to walk down 20 steps, walked 1/2 block each way and then up 20 steps.....No chest pain, no fatigue, no burning in my thighs and arms....
    Yes,I was breathing hard going up the stairs and stopped twice.....but I now know the difference between " breathing hard " and "being short of breath"or "dyspneic"...there is a real difference! My HR was only up to about 118 but considering I am anemic and at altitude it was a decent work out.
    The miraculous part was my recovery time....in less than a minute after I sat down, my breathing and heart rate were normal!!!! It used to take me 15 to 20 mins to recover from a flight of stairs. My arm muscles used to burn just putting away the dishes....I hope I'm not dreaming.
    When I tried Disopyramide I got some of these results, but it only lasted for 4 weeks.....Now, hopefully the changes are permanent.
    So Happy!
    After years of symptoms:
    Officially Diagnosed HOCM 2006
    Myectomy 3/11/13 at non-COE
    Extended Myectomy 7/23/14
    At Mayo with Dr. Joseph Dearani

  • #2
    Re: First Walk Outdoors

    And each time you venture out you'll make greater and greater advancements. Hows the breathing going? still using the inspirometer? It can take a while to clear the lungs, so even when your not "active," do some deep breathing.
    Glad your posting progress!
    Marc
    Diagnosed @ 48
    Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
    Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
    AICD - Valentines Day '08, Spark Plug replaced 11/14
    After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
    Quietly going insane . . .

    Comment


    • #3
      Re: First Walk Outdoors

      And each time you venture out you'll make greater and greater advancements. Hows the breathing going? still using the inspirometer? It can take a while to clear the lungs, so even when your not "active," do some deep breathing.
      Glad your posting progress!
      Marc
      Diagnosed @ 48
      Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
      Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
      AICD - Valentines Day '08, Spark Plug replaced 11/14
      After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
      Quietly going insane . . .

      Comment


      • #4
        Re: First Walk Outdoors

        So very happy to hear your report, Jill. It's been a rough ride for you, but sounds like that ride is over !!
        Onward and Upward !

        Diagnosed 4/07 HCM with fixed & dynamic obstruction
        Myectomy with resected cordonae tendonae 4/08 CCF
        ICD 10/08

        Comment


        • #5
          Re: First Walk Outdoors

          Huge like!

          Comment


          • #6
            Re: First Walk Outdoors

            Jill, it's great to hear this! Hope things continue to go well!

            Gordon
            Myectomy on Feb. 5, 2007.

            Comment


            • #7
              Re: First Walk Outdoors

              Jill, it's great to hear this! Hope things continue to go well!

              Gordon
              Myectomy on Feb. 5, 2007.

              Comment


              • #8
                Re: First Walk Outdoors

                That is awesome news Jill! I know what you mean about out of breath vs. short of breath. I used to go around looking for stairs - hard to do here where everything is flat as salt marsh and most buildings are single story. The other day at the Dr's office I skipped the slow elevator for the stairs and I must have looked like the village idiot bounding up the steps with a giant grin on my face. Keep up the good work-out!
                Angus Campbell
                Golden Isles Region, Southeast Georgia, USA

                Dx'd HOCM at St Luke's Roosevelt, New York City, 2005
                Myectomy Jan 9th 2014 at Cleveland Clinic
                Drs Lever and Smedira

                Comment


                • #9
                  Re: First Walk Outdoors

                  Great news Jill. Looking forward to the day I'm back on the mend myself.
                  Joel

                  Born 1955 in USA, DX'd w/HCM 1996, in United Kingdom
                  2011, 2013, 2014 ablations for Afib and flutter in UK, INOVA Fairfax, VA, and Johns Hopkins
                  June 2014 DX HOCM at Johns Hopkins
                  October 2014 Myectomy and Cryomaze at Mayo Clinic

                  Comment


                  • #10
                    Re: First Walk Outdoors

                    After a bounding start.... I had to drop back a little and slept almost all weekend! Redteamer; Have you got a plan for your myectomy yet? I can't remember what you decided and where....I guess that would be a post for the myectomy thread.....let us know.
                    Last edited by JillC; 08-10-2014, 08:41 PM.
                    After years of symptoms:
                    Officially Diagnosed HOCM 2006
                    Myectomy 3/11/13 at non-COE
                    Extended Myectomy 7/23/14
                    At Mayo with Dr. Joseph Dearani

                    Comment


                    • #11
                      Re: First Walk Outdoors

                      So happy for you! Keep up the good work!

                      Comment

                      Today's Birthdays

                      Collapse

                      Working...
                      X