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


No announcement yet.

I'm OK and Amazed


About the Author


wkevind Find out more about wkevind
  • Filter
  • Time
  • Show
Clear All
new posts

  • I'm OK and Amazed

    It has been over a year (16 mos.) since my HCM journey began and all I can really say is "wheew"
    From searching for answers and finding this forum, realizing what was really going on with me, having my myectomy (and valve replacement) and struggling with recovery and my own PTSD 'till now has been quite a trip.
    While talking with a dear friend who has been down the same path I realized that I have actually had days when I don't even think about my HCM!!! Does that mean I am well? I cried when I recalled the fear the uncertainty the recovery, the desperate unknown ahead of me. Then I remembered the comfort I found with this group of caring souls, THANK YOU ALL.
    Today my life is changed I smile and laugh more I work harder (I am currently working at a local orchard)and love stronger than ever before. I can spend the day doing heavy physical labor come home exhausted and never once have to stop and worry about HCM. Amazing.
    Barbara has put up with it all and still stands by my side...Amazing.

    Thanks again to all the old timers.

    To the newer folks- this is survivable, it is a long weird trip but it's all worth it.

    W. Kevin Dougherty

  • #2
    Re: I'm OK and Amazed

    Congratulations, Kevin, that's really good to hear. I'm happy you've come through. Good for you and for your family.
    Diagnosed (w/obstruction) 2003 at 39
    Alcohol Septal Ablation Feb. 2006
    Myectomy April 2007 Cleveland
    Pacemaker dependent (no ICD)
    Thankful and doing fine


    • #3
      Re: I'm OK and Amazed

      Glad to get the update Kevin!
      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 . . .


      • #4
        Re: I'm OK and Amazed

        Sounds as if things are defintely on the upswing. Very good !
        Onward and Upward !

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


        • #5
          Re: I'm OK and Amazed

          Hi Kevin

          You're right, this is survivable, and very tough at times, but worth it all in the long run.

          I know about PTSD, but some things just go with the territory.

          You sound wonderful, I am very happy for you.

          Hugs and more hugs to you and Barbara.

          49 yrs. old
          Diagnosed at 31.
          Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
          First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
          Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
          Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
          My brother passed away suddenly at 34 yrs old from HCM.
          2 teenage children, ages 17 and 15.


          • #6
            Re: I'm OK and Amazed

            I'm really happy to hear things are going so well for you! Thanks for the update and I wish you continued good health.

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


            • #7
              Re: I'm OK and Amazed

              What a great and touching update to read! Thanks for sharing your journey with us. I'm happy that you're doing so well.
              Philippians 4:4-9; Wife, & 39 yo Mom to 9 year old son and 6 year old son/daughter twins; Diagnosed with HoCM 1999; Cleveland Clinic Myectomy and ICD, January 2006.


              • #8
                Re: I'm OK and Amazed

                You made my day.... thanks!
                Your story is like so many I hear every day on the phone but few post... wish more did.

                Best to all,
                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)


                • #9
                  Re: I'm OK and Amazed


                  What a great story Thanks!!

                  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


                  • #10
                    Re: I'm OK and Amazed

                    I'm glad things are looking better . . . keep us posted!

                    Myectomy on Feb. 5, 2007.


                    • #11
                      Re: I'm OK and Amazed

                      Thanks for sharing the story of your survival and how you are dealing with it. You definately are an inspiration.

                      Diagnosed Obstructive HCM December 2008
                      Diagnosed: Obstructive HCM December 2008 (@ 21yrs old) .
                      ICD Implant December 2009.


                      • #12
                        Re: I'm OK and Amazed

                        It is great hearing your story. Kudos to you. I wish you continued strength on your journey.
                        Choose to laugh instead of cry...it's prettier!
                        You always have the option to change.

                        Diagnosed 1994 with no family history
                        AICD 10/06
                        Mayo Clinic Myectomy 11/07 Joe Dearani


                        • #13
                          Re: I'm OK and Amazed

                          Great journey and success Kevin... another reason why specialized care is so key to getting an individual back to a better quality of life and living when the problem is young and it is new and no advances or complications have presented to make further changes in the HCM heart. Wishing you continued success and wellness in your HCM journey.

                          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


                          • #14
                            Re: I'm OK and Amazed

                            Yes, Kevin, it is like being thrown on an amusement park ride in the dark, if you are lucky you get to grab a hold of a hand of someone who turns out to be a friend, eventually you realize that it's not so dark and you can stick your other hand out to those being thrown on just like you did and do.... thank you for the heads up to those behind you

                            Now if we could all learn to be as daring as you and get an actual heart tattoo on our chests!
                            Diagnosed with HOCM Dec. 2007 at 40
                            Myectomy 12/08/08 UoMichigan
                            Treated for "Asthma" since 2004 and took Claritin-D every night for 3 years- while my "Asthma" got worse and worse.
                            Mother has mild HOCM gradient of 25