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.

Got the call

Collapse

About the Author

Collapse

CBK75 Cardiac Arrest 1994 Find out more about CBK75
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • #46
    Re: Got the call

    Almost 6 weeks have paased. I have had 3 biopsies and although they have gotten easier to tolerate I am still not found of them. They have all come back 0 so I am slowly able to decrease some of the medications. As well they have put me on a 2 week biopsy schedule which is nice.
    The medications still have their side effects but nothing like when I started.
    I am off of blood pressure medication. It turns out that the company in the states that make Hydralazine has been on strike for a while and there is a world wide shortage of it. So the doctors told me just to stop it and see what happens. It turns out my BP dropped into normal range. Now figure that out!!!!
    My heart rate is hovering around 74 resting and at a fast walk I am able to acheive 100 BPM. I am deconditioned after two years of not being able to do very much but I am trying and it will take time.
    I am walk almost daily 3.5 - 4.5 miles. That is on top of any toddler wrangling or twin duties that happen.
    My wife and I are finially able to go up to our cabin after 2 years. So we are really looking forward to next week when we pack up the kids and get the boat hitched up and get on the road.

    Life is good.
    Chris

    35 years
    Diagnosed with HCM 1991
    05/1994-Cardiac Arrest
    06/1994-Myectomy
    09/2001-1st ICD Implantation-University of MN
    12/2001-2nd ICD Implantaion-University of MN
    11/2008- Offically Listed for a heart transplant
    09/2010 Fathers Day! Heart Transplant

    Comment


    • #47
      Re: Got the call

      Chris - thanks for sharing this great report! Enjoy the trip -

      Linda

      Comment


      • #48
        Re: Got the call

        Chris,
        This is great to hear!

        Gordon
        Myectomy on Feb. 5, 2007.

        Comment


        • #49
          Re: Got the call

          Such great news. You are putting me to shame.
          Midge

          Diagnosed in 1977, Myectomy in 1981 @ Mayo Rochester
          ICD&Pacemaker 1996
          Heart transplant March 19, 2004 @ Mayo Rochester
          Mom of Kaye.

          Comment


          • #50
            Re: Got the call

            Great to see you going back to the cabin after 2 years!!! Enjoy Life!!!

            John
            Myectomy August 3, 2010
            Dr. Smedira -Surgeon Cleveland Clinic
            Dr. Harry Lever -Cardiologist Cleveland Clinic

            Comment


            • #51
              Re: Got the call

              Chris - You've truly been blessed. Couldnt be happier for you.
              Please update your signature -
              New heart, new twins, new life!
              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


              • #52
                Re: Got the call

                Nice!

                Congratulations on getting your life back. If you are still uncomfortable with the biopsies you should talk it over with the nurses. They can customize a "cocktail" that can work for you. Emily has settled in on a dose of valium by mouth when we first arrive. It relaxes her and makes it easier to start the IV when she is relaxed (she's a "tough stick"). During the procedure they drip in fentanyl. She's awake but comfortable. She does not tolerate versed well, which is the cath lab's first choice. They have been great about working with her. Her 18 month check and catheter is Tuesday. We haven't been there since February. As time goes on the medical visits seem like more of an intrusion, not less, since it is no longer the central focus of our lives.
                Good luck.
                Bob

                Comment

                Working...
                X