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.

trying to decide: ICD or not

Collapse

About the Author

Collapse

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

  • trying to decide: ICD or not

    I am a 41 yr old aerobics instructor and mother of two grade school aged girls living in Boston. My HCM was diagnosed 5 years ago and my symptoms are getting worse as is my echo. My conservative cardiologist at the Brigham suggested I consider getting an ICD. Upon consultation with the surgeon and electrophysiologist I thought maybe it was a good idea, although as yet I have not fainted and I can exercise like a 20 year old without chestpain or arrythmias. Sometimes I get dizzy and I do however experience fatigue 2 hours post workout and periodically during a normal day I am out of breath with normal activity. No one can seem to understand or explain this dichotomy. Will a ICD help my obstruction and allow me less fatigue, or am I just getting old? How much trouble is this apparatus? What about the saying "If it is not broken don't fix it." Some people on this board seem to love their devices, others get no peace from it.

  • #2
    Re: trying to decide: ICD or not

    Hi Rochelle. The ICD will not decrease the obstruction or cause you to be less tired. It will only be there to monitor you and to save your life if you need it. There are 5 risk factors that your doctor will look at to determine whether or not you should get an ICD: personal history of fainting, family history of sudden cardiac death especially at an early age, septum thickness of 3+ cm, inappropriate blood pressure reaction to exercise, and history of ventricular tachycardia. Depending on which factor, the doctor may decide to place an ICD with only one factor apparent or they may require more than one. That also may depend on the doctor. I hope I've answered your question.

    As far as your exercising as well as a 20 year old with no problems, I think you're not doing yourself a service. First of all, you are having a problem if you're fatigued for 2 hours post-exercise. Secondly, you are overworking an already overworked muscle and you might do long-term damage to your heart in that it never gets a chance to rest. I suggest you discuss your exercise regimen with your doctor. It sounds to me that it's not appropriate for you any more. That's my two cents worth.

    Reenie
    Reenie

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

    Comment


    • #3
      Re: trying to decide: ICD or not

      Rochelle,Yes I agree if its not broke dont fix it !! now lets think about that for a minute ,we are assuming that when we need an icd therapy that one will be there to get that "fix", not very likely, so if we are at risk for dis-rythmia we should have our fix with us . Thats why I have my ICD and I am glad I do ,it fired off 8 times since Sept,02 and all but 2 of those times I was alone with no one to fix it for me .and thank goodness for it cause without it I wouldnt be talking to you now ! good luck Rich
      Allways remember you cannot control the wind!!
      However you can adjust your sails!!

      Comment


      • #4
        Re: trying to decide: ICD or not

        I would ask clearly what the reasons are the doctor thinks an ICD is an option. The posts above are accurate in the reasons for ICD implant.

        Go slow, think it out and make the BEST choice for YOU. If you need any information - we are happy to help.

        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


        • #5
          Re: trying to decide: ICD or not

          Rochelle
          I'm 52, have never fainted. There is a "sudden death" on my fathers side, which as of today the reason is still in question. My septal measuremant is somewhere betwen 2.4 and 3 cm ( different echos and different docs ) and I did have one 8 beat run of monomorphic non sustained tachycardia picked up on a halter.
          One Doctor put me on beta blockers alone. I finally went to see 2 others as well as the electrophysiologist. Based on my medical and family history, they suggested an ICD. Could I have gone on without it? Probably yes. But I aggree with Rich's assesment. I would rather have the fix with me, than to rely on a fix being available when I need it the most. So, Last March I got my ICD.
          Do your homework, consult with medical professionals and ask questions.
          God Bless
          Reinhard
          Diagnosed in 1980, ICD Implant 2003, 2nd ICD in 2010.
          Gene Positive, As is my mom as well as one of my 2 sons ( 50% Rule ) and my Grandson.
          Non Obstructive. Atenolol

          Comment


          • #6
            Re: trying to decide: ICD or not

            Dear Rochelle,

            I second everything Reenie said. In addition, if you are obstructed, then you should find out what your gradient is and determine if you are a candidate for a myectomy (surgical removal of obstruction). You aren't far from some of the best HCM doctors around. Please see the links page for the Tufts-NEMC url.

            An ICD placement is only a factor if you have several risk factors for sudden death --have you had a stress test and know your family history?

            Also, if the doctor was thinking of a dual ICD/pacemaker, you should know that pacemakers are NOT, the big cure-all some thought they might be, back in the mid-90s. There are also guidelines for pacemaker placement, but I don't know what they are.

            HCM defies explanation over and over again. I had a stroke when it was "medically impossible" --so your situation sounds pretty "standard" for HCM to me.

            Seeing a specialist is IMPERATIVE and you live near one, so please don't hesitate.

            take care,
            S

            Comment


            • #7
              Re: trying to decide: ICD or not

              thanks for your replys folks. I do appreciate them. I am new to Boston and I thought the Brigham had the best Cardiology department, but I will get a second opinion from someone at NEMC. I do have an HCM doc, I have had stress tests, and a few cardiac caths at the NIH where I was diagnosed originally. I have attempted to taper off my aerobics classes and have given away the hardest class and I feel better about that. However the doctors have all said that there is no correlation between exercise and a worsening of the condition- only a risk of sudden death when your HR gets too high. Because I can get to my max HR and not have any rhythm abnormalities, and because I have the correct HR response to exercise- increasing instead of decreasing- no doctor has restricted my activity. I have worn holters for weeks at a time which showed nothing significant except slow HR- about 40. I currently take verapamil 240mg daily, I tried beta-blockers at first but they decreased my exercise tolerance. Getting this ICD seems like overkill, and I hate contraptions of any sort- I am afraid I will be one of you who's devices fire inappropriately, or the device/wires prove irritating. My doctor claimed those problems stemmed from older models and if programmed correctly the new models never have problems. What do you people think of that comment? I am skepticle still.

              Comment


              • #8
                Re: trying to decide: ICD or not

                Originally posted by rochelle
                I am afraid I will be one of you who's devices fire inappropriately, or the device/wires prove irritating. My doctor claimed those problems stemmed from older models and if programmed correctly the new models never have problems. What do you people think of that comment? I am skepticle still.
                Hi. I only know what my husband's experience is with his ICD. He's had it for 3 years now and it hasn't fired. He's never had any problems with it at all. The only thing with it is that the doctor put it in a little closer to his side than he wanted so that the bottom edge of it pokes out a little bit. That causes discomfort when something rubs on it. There have been a couple of times when something hit him in the chest right on top of the defibrillator and it stung some. Just like when you hit yourself right over a bone. No cushion for the skin. But my husband hasn't slowed down any because of his defibrillator or since he got it. He only slows down when his body is tired.

                The ICD itself hasn't been an issue at all except for his job. Disclaimer: He's active duty military. His ICD made him no longer eligible for overseas assignments and he no longer plays along when they do exercises to prepare for the prospect of war. In other words, he doesn't wear the chemical warfare gear or the flak vest when others do when they do war exercises. It is too heavy on that part of the ICD that sticks out. That's my experience, but there are many others here who can tell you more than I can.

                Reenie
                Reenie

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

                Comment


                • #9
                  Re: trying to decide: ICD or not

                  Dear Rochelle,

                  I guess I'm confused. Do you have any sudden death risk factors? You mention that you don't have one (bp response), but I can't tell from your posts why an ICD is being recommended. I mean, I can understand your concerns about misfires, but if you have several risk factors, then it is a no-brainer. However, if you don't have any risk factors, it is still a no-brainer--no ICD is needed at this time.

                  But, yes, new ICDs are very reliable and when placed by someone who knows what they are doing, not a big deal after you heal up (so I'm told).

                  Thanks,

                  S

                  Comment


                  • #10
                    Re: trying to decide: ICD or not

                    Hi Rochelle,

                    I'd have to say i'm with Sarah on this one. I've never known anyone yet who was trying to 'decide' whether to get an ICD or not. I've always thought that you either need one or you don't, period. Has your doctor fully explained to you yet why he thinks you should have one? Have you been adequately assessed for sudden death risk factors?

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

                    Comment


                    • #11
                      Re: trying to decide: ICD or not

                      Hi Rochelle

                      My docs gave me the facts based on my medical history and informed me of my risk factors. They "recommended" that I get an ICD and thought it would be a good move. I thought about it quite a bit and had many of the same concerns others have. What about mis fires, bad leads, irritation, etc. I was even questioning the doctor on the way to the OR about lead removal.
                      I asked many questions about risk factors and the whole procedure and probably made a pest out of myself. Bottom dollar is I had it implanted last March. Surgery wasn't bad.. Never even took pain killers for the surgery. I'm getting more and more used to it and frankly speaking most of the time I don't even know it's there.

                      God Bless
                      Diagnosed in 1980, ICD Implant 2003, 2nd ICD in 2010.
                      Gene Positive, As is my mom as well as one of my 2 sons ( 50% Rule ) and my Grandson.
                      Non Obstructive. Atenolol

                      Comment


                      • #12
                        Re: trying to decide: ICD or not

                        Hi Rochelle,

                        I was a Jazzercise instructor when I was diagnosed 5 years ago. My brother died while playing volleyball and I was tested about a month later. The first thing I was told was no more teaching. I was told this by 4 different doctors.( They would not even let me do the strss part of my stress echo initially..talk about freaking me out!) I guess I am confused why they would be recommending an ICD (which I have had for 4 years) but let you continue to do such high intensity exercise?? As you know our students work out hard but being the instructor we work out even harder trying to motivate them. It is my understanding that any kind of competitive sports (which many docs see aerobics instructing as competitive) is not recommended for people with HCM. Obviously it depends on how severe your HCM is but at the time of my brothers death and my diagnosis we had no symptoms and had no clue we had HCM.

                        At any rate, I am now 41, have not taught since my diagnosis, am a proud owner of a Medtronic ICD and walk about 35 miles per week. I have opted for the less intensity but longer duration theory so that I can still exercise. I know how hard it is to be an avid exerciser. I could not imagine giving it up completely and am thankful I can walk like I do.

                        Having the ICD put in was not a hard choice for me beacuse I need to be here for my 2 kids. I now have a 13 year old nephew without a father and that is hard to see.

                        Good luck to you and stay well.

                        Julie

                        Comment


                        • #13
                          Re: trying to decide: ICD or not

                          I have had no adverse issues with my ICD - the newer units are far better than the older ones. Get the 2nd opnion and make your choice - your kids need you so think carefully and make the RIGHT choice for YOU!
                          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

                          Today's Birthdays

                          Collapse

                          Working...
                          X