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kedcav Married, 4 brothers, 2 children. Find out more about kedcav
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  • Newly diagnosed and confused

    I was diagnosed last year, but did not realize it was such a big deal...just started the beta blockers and ignored it. My last ECO showed things had really progressed since last year, so I decided to have the alcohol septal ablation. After having a cardiac catheter I was informed I am not a candidate for that procedure. I am now reading some blogs, and see that I may not be able to go back to work for 8 weeks if I have the myectomy. I also see where some folks have had the myectomy and still had to have a heart transplant a few years later. I am having breathing issues and some chest discomfort, but wondering if I should just get a defibulator and not have surgery?

    Dazed and Confused in Texas

  • #2
    Re: Newly diagnosed and confused

    Hi, "Dazed and Confused in Texas". Don't worry, we have all been dazed and confused at some point in time. First of all, welcome to the HCMA message board. I see that this is your first post. My first recommendation to you is that you contact the HCMA office and speak with Lisa. She can help you sort things out, in terms of the procedures that you have had and what you may expect out of a myectomy. An ICD will not relieve your obstruction, it will only protect you from a SCD due to an arrythmia. Lisa can also give provide you with the statistics with those folks who go onto transplantation, which is a VERY small percent.

    You might want to go go back and read some old thread under the septal reduction heading. You will find lots of information about myectomies, and please know this......everyone is different. Some are released to return to work as early as 4 week. The norm is 6-8 week. Some folks take a little longer.

    Make the call, it will be the best call you will have made. The number is 973-983-7429.

    BTW, I would encourage you to introduce yourself in the "Hello, my name is......." section.

    Linda
    Onward and Upward !

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

    Comment


    • #3
      Re: Newly diagnosed and confused

      Hi Dazed,
      I'll echo Linda on all points.

      An ICD won't help your symptoms; a myectomy might. But not everyone can benefit from a myectomy; it depends on whether your HCM is actually causing an obstruction, and on details of your heart anatomy.

      The best thing to do (and not only to find out more about myectomies) is to call Lisa at the HCMA office. Really.

      Yes, some people do wind up with transplants. This is actually quite rare (but understandably prominent on this board). In general, the earlier you start in a sensible treatment regime (which might or might not include a myectomy), the less damage to your heart in the long run.

      Give Lisa a call.

      Gordon
      Myectomy on Feb. 5, 2007.

      Comment


      • #4
        Re: Newly diagnosed and confused

        Welcome - Please do call the HCMA office. Yes, the time is needed for recovery from surgery, but you need to balance that with the improvement in your life that you can expect after the surgery. It sounds like you have some time to talk this all thru and learn all you need to learn to feel like you can make the best decisions for you.

        Best wishes - Linda

        Comment


        • #5
          Re: Newly diagnosed and confused

          Evaluating your options for treatment can be overwhelming - and in your short post you hit a large number of options in just a few sentences - however the links between your options are not how you have laid them out and I think it is a good time to take a huge step back and evaluate the information a bit more clearly.

          The best first step is to get a copy of your echo report- fax a copy to the HCMA office, arrange a time to call in and we can go over the report together and help you draft questions to bring to your doctor to help evaluate YOUR options better.

          Reality check -
          VERY FEW people need mutliple invasive procedures and picking the right one for you is what is critical. Please do not think you are going to need everything in the HCM treatment tool box - that is likely not the case for any of us.
          Be well and call the office next week.
          Lisa
          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


          • #6
            Re: Newly diagnosed and confused

            Kedcav,
            Can't really add anymore. I agree with the others. Please do give Lisa a call. You'll be so glad you did.

            And welcome to this website. I'm glad you found us.
            Give us an update when you can.
            Theresa
            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.

            Comment


            • #7
              Re: Newly diagnosed and confused

              Kedcav - Not easy to adapt to the news. My first couple of doctors mentioned HOCM/HCM but did little to inform me and I, lke many others, went on my merry way. It wasn't until the symptoms popped up that I realized I needed to take better care of myself and to become better informed. Now, three years later I have an ICD & newly remodeled heart thanks to some experts at Mayo.

              Good luck on your journey, Keep us posted & glad you found us!
              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


              • #8
                Re: Newly diagnosed and confused

                Welcome Kedcav. The others have offered some excellent advice.

                Leon
                God Squad co-moderator
                Nothing is as gentle as strength and nothing is as strong as gentleness

                Comment


                • #9
                  Re: Newly diagnosed and confused

                  Welcome to the HCMA message board .. I hope we can offer you much information.

                  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


                  • #10
                    Re: Newly diagnosed and confused

                    I just talked to Lisa and feel better already. I will be obtaining my ECO report and sending it to her for review. How wonderful to have an advocate who is so patient and has so much knowlege to share. The worst fear is that of the unknown. I was feeling like my only option was surgery. With help and education, I will feel more confident about whatever comes next. Thanks!

                    Comment


                    • #11
                      Re: Newly diagnosed and confused

                      Glad you made the call. Now, you can move onward and upward !
                      Onward and Upward !

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

                      Comment


                      • #12
                        Re: Newly diagnosed and confused

                        Glad to hear it!
                        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.

                        Comment


                        • #13
                          Re: Newly diagnosed and confused

                          Great to hear!

                          If you need surgery, it's there (and a number of us can tell you about it), but here's hoping you won't need it.

                          Gordon
                          Myectomy on Feb. 5, 2007.

                          Comment


                          • #14
                            Re: Newly diagnosed and confused

                            Thanks for the sweet note! We will help you become your own best advocate!!
                            Hang in there!
                            Lisa
                            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

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