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Myectomy & doing good? Too quiet too long – REPORT IN!

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Stuart Schwartz Find out more about Stuart Schwartz
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  • Myectomy & doing good? Too quiet too long – REPORT IN!

    If you had a Myectomy & you're DOING GOOD Report in.

    Boy, I"d like to hear from some of those who helped me when I was new here some 2+ years ago.


    For me;
    2 ½ years for me and doing GREAT!

    Stuart
    Cleveland Myectomy Club
    August 31, 2004

  • #2
    Re: Myectomy & doing good? Too quiet too long – REPORT IN!

    Hi

    My myectomy was Jan 3rd of 2006. I had a 2 page report of how I started down the HCM road from initial diagnosis to where I am today. I decided that I can be long winded, and that I will post it Jan of 2008. That is a good statement coming from me. I reminisce now and see how bad I really was, and I do not think I would have made it to 2008.

    Long story short, I am still doing great!!!!!

    Scott

    (Cycling very slowly and happily across Iowa in July while being very hydrated)
    Every day is a present I was diagnosed when I was 38, I have asthma which made me assume it was ashtma, getting old, and being about 30 lbs over what I should be. I have days when I would rather not know. Myectomy club 3Jan06 CCF, my life is so much better!!!!

    Comment


    • #3
      Re: Myectomy & doing good? Too quiet too long – REPORT IN!

      Hey Stuart, I was just thinking about my kids and their myectomies. I couldn't believe it has been since 1997 (10 years) with my daughter and my son was 1998 (9 years). They are still doing awesome even with their growing bodies. I am grateful that we caught this disease at 4 days old for my daughter and at birth for my son. If not, I'm afraid my daughter may not still be with us.

      Have a great day!
      Michelle - mom to Krista and Tyler both HCM
      Krista surgeries: 3/97 myectomy, 2/99 mitral valve replacement
      Tyler surgery: 1/98 myectomy

      Comment


      • #4
        Re: Myectomy & doing good? Too quiet too long – REPORT IN!

        1 year ago this week! Hard to believe its been a year already.
        husband, father of 3, dx in 10/05 at the age of 36, Mayo myectomy club member as of 2/24/06

        Comment


        • #5
          Re: Myectomy & doing good? Too quiet too long – REPORT IN!

          I am around 19 months post myectomy and doing great. I have been cross country skiing in my field nearly daily the last 2 weeks, but the snow is going quickly now. I've skated and have gone sled riding with my chidlren. It's not that I forget, but many days I rarely think about HCM. Not that I don't think and pray about all of you. It's just that life is full and my current stage of HCM is of little limitations!

          Need the surgery? Don't be afraid...have it!
          Blessings, Laura
          Dx: HOCM 1991, Myectomy/Mitral Valve Repair @CCF July 19, 2005. Wife and Mom of two: ages 5 and 3.

          Comment


          • #6
            Re: Myectomy & doing good? Too quiet too long – REPORT IN!

            A few dozen myectomys on this board & only 5 of us are doing good???????

            Come on guys, REPORT IN!
            Cleveland Myectomy Club
            August 31, 2004

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            • #7
              Re: Myectomy & doing good? Too quiet too long – REPORT IN!

              Hello...

              What a wonderful day it is... I got up walked 1.5 miles on my treadmill and climbed the 12 or so stairs up to my kids bedroom to say good morning.
              Just 3 months ago today I had the wonder surgery called a "MYECTOMY" and my life has changed dramaticly. 90 days ago the treadmill want even a thought and most morning my kids stopped in my room to say good morning dad.

              I have more energy today than I can remember overthe past 5 years. I can walk, stay up past 8:30pm, and even climb stairs.

              I am very fortunate and blessed that I have had no problems since the surgery and every step has been positive. If I had to do it over again, I would walk in to the hospital and say lets get it done, because it has been the most life changing experience of my almost 50 years on this earth.

              I hope and pray that you can all the sucess & new found freedom that Ihave enjoyed these past 90 days. I have my life back and I cant wait to enjoy it.

              Best of Luck, Prayers & Blessing to all out there.

              Good Bless....Bob
              Diagnosed with HOCM January 2006
              Married to the most beautiful woman and supporter in the world Deb,
              Myectomy and Mitral Valve replacement Nov 22, 2006 @Yale New Haven Hospital

              Comment


              • #8
                Re: Myectomy & doing good? Too quiet too long – REPORT IN!

                Hello ..

                My son Brian (11 years old) had his myectomy 2 years ago this month and he is doing great. The difference is unbelievable. I am so grateful for his operation and this site and the support from this site...

                Sheila
                Sheila

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                • #9
                  Re: Myectomy & doing good? Too quiet too long – REPORT IN!

                  I had my myectomy done in May of 2005 at the Cleveland Clinic Foundation with Dr. Lever as my cardiologist and Dr. Smedira as my heart surgeon.


                  I am doing well. I'm now 43 years old. I swear, 2 years ago, I thought I'd never see this past birthday.

                  I am tired by the end of the day, and I cannot do certain physical activities.


                  But, I am alive and I can function through a normal day and, I am eternally grateful to The HCMA and THE CCF for giving me this.

                  I have time with my children, there is nothing better or more important in the world to me, it is what I live for.

                  Thank you HCMA and CCF!!!


                  Eve
                  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.

                  Comment


                  • #10
                    Re: Myectomy & doing good? Too quiet too long – REPORT IN!

                    I would like to add...

                    I have lost quite a bit of weight since my surgery. I'm about 120 pounds now and I do much better when I am thin then when I am overweight. Before my surgery I weighed about 165 pounds, that really affected my heart in a bad way.

                    But, before my surgery, I was in a "catch 22"..... I was overweight because I could barely move and I could barely move because I was overweight (and of course that pesky obstruction made it difficult too).

                    The surgery helped me to be able to be more mobile, and that along with major diet changes made it possible for me to lose the weight.

                    HCM and excess weight do not mix well.



                    I was never overweight until I had my kids and I was never very symptomatic when I was younger.

                    Ya know, it's tough... I love to work out, go to the gym (which I don't anymore and haven't for years), I love to hike, dance, swim and all that kind of stuff, but my heart just won't let me do very much of it.
                    Sometimes it's really depressing.
                    I want to move, I want to run, I want to go.. but I can't.


                    Oh well.
                    I guess there's not much I can do about it.



                    And, that's why I do appreciate all the good I have in my life, like the time with my kids (when my ex-husband does not have them).
                    But, I admit, there is a part of me that wishes I could do more physically.
                    Some people take for granted what they can do physically, I would be on cloud nine.


                    Thanks for reading.

                    Eve
                    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.

                    Comment


                    • #11
                      Re: Myectomy & doing good? Too quiet too long – REPORT IN!

                      Well, I had surgery on 11/7/05 so I am about 15 months out. I am, without question, much better than I was before surgery. I can keep up with my kiddos a lot better and even have a very busy full time job now Before surgery I couldn't walk the length of our hallway without needing to stop or pass out!

                      Life with HCM is managable but I am always aware of its presence ... if that makes any sense! I was just telling someone the other day that all of my HCM symptoms have probably been there my entire life but I thought it was "normal" - HA!

                      I am fighting another cold now and yes, I do catch those darned things quickly. It takes a bit longer to get over things, too.

                      All in all, I am forever grateful for the myectomy I had!
                      Amy
                      Happy wife and mother of four
                      Diagnosed wit HOCM in September 2005
                      Myectomy at Mayo Clinic November 7, 2005
                      Pacemaker August 24, 2011

                      Comment


                      • #12
                        Re: Myectomy & doing good? Too quiet too long – REPORT IN!

                        Well I had mine on 2-26-04 in some ways I'm better not having the obstruction anymore, my condition has turned to restrictive diastolic dysfunction meaning both ventricles are very stiff so I guess I didn't come out of my myectomy like everyone else but from what I understand I fall in the 1 to 2% that that happens to but I'm glad I had the myectomy

                        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


                        • #13
                          Re: Myectomy & doing good? Too quiet too long – REPORT IN!

                          Greetings All,

                          It will be three years for me on 05/17/07. I must say it was the best thing for me. After 10 short days at the Cleveland Clinic and three months of rehab, I was like a new person. Six months after my surgery I was in northern Canada hunting in sub-zero temps with no problems. I had my Drs blessing to go on this trip but not my wifes.

                          I have been back to Cleveland once for a check-up and will be going back again this summer for another. I also hope to make it to the convention this year. I would love to meet some of my fellow members in the "Myectomy Club".

                          Sorry it took me so long to check-in, I don't have as much computer time as I used to.


                          SEE YOU IN JUNE,
                          Tigger1
                          " Real Courage Is Being Scared To Death But Saddling-Up Anyway "

                          Comment


                          • #14
                            Re: Myectomy & doing good? Too quiet too long – REPORT IN!

                            Hi all, I'm coming up on 3 years since my myectomy at CCF 3-18-04. I'm doing very well. I still have to pinch myself to see if this is real! I really do feel better than I've felt in 30 years. All those years of chest pain, fast pulse, pvc's etc. Thank you HCMA!!

                            I thank God every day for HCMA, CCF, Dr. Lever, Dr. Smedira etc.

                            Ralph King

                            PS I hope to see many of you at the Annual Meeting in June.

                            Comment


                            • #15
                              Re: Myectomy & doing good? Too quiet too long – REPORT IN!

                              I had my myectomy on October 25 2006. I am doing fantastic!! I hit some bumps along the road of recovery. On Thanksgiving I was hospitalized for some complications from surgery. Things got pretty serious because I ignored some important symptoms and made things a whole lot worse! I am so glad I had the surgery because I feel SO much better but I would tell people out there to watch for symptoms after surgery that are not normal like sudden weight gain(duh! I ignored this) drastic shortness of breath and OVERWHELMING fatigue. I made a full recovery after some time in the hospital and am currently doing great. My advice for people out there facing myectomy is its normal to be nervous, God knows I was, but you too will get through it and be ever so glad you did it! Barb
                              Diagnosed Aug 2006 Myectomy 10/25/06 ICD 07/18/08

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