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Back from my Visit with Dr. Shah


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kathyn2 Find out more about kathyn2
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  • Back from my Visit with Dr. Shah

    I saw him to get a second opinion on whether or not I should get the ICD/pacemaker combo. He thinks I should so now I am looking for a good doctor down here in san diego to put one in. He says there is a 20% chance it might help relieve my obstruction and that I should try it. He said that the latest info is that only a small percentage get heart failure from being paced this way and that it was a certain type of patient where I don't fit that mold. I can't remember now. I am such a ditz. Anyway, now I am scared to death of this. I don't want one!

  • #2
    Do not be afraid of an ICD. The implant will hurt for about 2 weeks then it fades away and at 6 months you actually forget that it is there.

    Please take care of yourself and look for an EP in your area that can help you. If you need help finding one give me a call and I will do some digging for you.

    Be well,
    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)


    • #3
      Kathy, I'm just glad you got some good sound advice and you now have a direction to go. Let us know how it goes for you.


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


      • #4

        I also have an ICD too and it is my best friend just to know it is there to help save my life is a great comfort to me, my son has one and it has zapped him and i just thank god it is there or he well i don't want to think what could have happened and lisa is right it only hurts for a couple of weeks and then after 6 months you forget it is there, so get it done what have you got to lose

        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


        • #5
          Yes, its like I am scare to get it but more scared not to. I will be getting one as soon as I find someone here that is not afraid to consult Dr. Shah about setting the pacer. He thought I should have one due to the heart thickness 27mm, the symptoms I had in november and december (dizziness, light headed and 2 blackouts) and the fact that I have ALOT of pvc's and a couplet that was recorded (couplet not that bad but could be if there were really more and that fact that I have so many pvc's per hour). Anyway, it is a saftey measure.


          • #6
            Hi Kathy
            It took me two weeks after knowing I needed an ICD, to finally consent to it.

            I was admitted to St. Mary's in Rochester for a myectomy, and with the problems I was having prior to the myectomy, the doctors approached me with that suggestion.

            My husband, daughter, doctors and nurses kept trying to encourage me. I was so darn afraid of the ICD, but I also knew that if I didn't get one, there was a HUGH chance of sudden death (my son passed away from sudden death).

            I had just remarried 4 months before this occurred and my husband said, "We just found each other. We have so much to do together. I want to spend the rest of my life with you. So, please have the ICD". My daughter would keep saying she didn't know what she would do if she lost me. I tried to explain that everyone must pass on, but she said, "The ICD is giving you protection."

            I took everything weighed the pros and cons. One week after I had my myectomy, I had an ICD inplanted.

            Please keep in tough. Should you have any questions, don't hesitate to ask. We are all here for you.

            Take care


            • #7
              Hi Kathy,

              I do not as of yet have an ICD... everyone is still trying to decide if i need one or not. LoL. But should the word be given... i'll let them put the dang thing in me as soon as possible. It IS a safety measure, and has in fact saved countless lives, many of whom are right here on this board. Please do not be afraid of it... i would think that having one would be quite liberating in fact. You will read the occasional story of a misfire, and i can only imagine how discomforting that must be... but it is quite rare, and compared to the benefits of having one i would not hesitate to get one myself.

              Please take care, and continue to let us know how you are doing.

              "Some days you're the dog... some days you're the hydrant."


              • #8

                It is a tough decision when you put thought into it so this is why for me personnally when all the facts are in and what is said makes sense in theory and statistics back it all up , I take my thoughts, emotions and fears out and robotically just do what it is that must be done to keep me well and safe.

                Most of my life as I have faced many , many challenges, I did not always concurr , nor did I particularly like the spoon full of medicine destined for my mouth. As I look back just picking up my feet and moving forward , one step at a time , with everyone pulling for me has allowed me to continue to do what experts ,friends and family, advise and tell me is best for me. These choices although not always completely mine have been the best for me.

                I wish you luck and peace with your decisions.

                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


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