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Who hasn't got an ICD??

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  • Who hasn't got an ICD??

    Seems we have a lot to thank the late Dr Michel Mirowski for in inventing the ICD...

    And it seems that VT/VF can be reliably reverted back into sinus rhythm with these amazing devices.

    What i'm wondering is, who hasn't got one of these installed AND knows they have HCM?? (or knows someone that wont have one installed)

    Apart from the financial costs of course - which may be prohibitive for some without appropriate health insurance - is there anyone that decided against an ICD and reasons why??

    Thanks
    Dave

  • #2
    I have an ICD, but I wanted to respond to this post anyway. ICDs are not appropriate or warranted for everyone with HCM. They are only recommended for those who have enough of the risk factors to warrant one. Also, they can cause their own problems. You can have infections from implantation. Leads can break and cause problems. I know someone who had to have open heart surgery to remove a lead that was causing a problem. They have to be replaced every so often which once again opens you up to the risk of infection. They can malfunction. I just had mine recalled and had to have it replaced 4 years earlier than I otherwise would have had to. Not to mention the unwarranted shocks that they can cause by misreading other types of fast heart rates. They prevent you from being able to have MRIs.

    There are many other reasons besides purely economical why they should not be implanted in everyone. Many of those with HCM live a normal life and never know that they even have it. On the other hand, if a person is at high risk for sudden cardiac death, the ICD is a gift which is well worth all of the inconveniences and possible problems. Its just like everything though, you have to weigh the costs against the potential benefits.
    Daughter of Father with HCM
    Diagnosed with HCM 1999.
    Full term pregnancy - Son born 11/01
    ICD implanted 2/03; generator replaced 2/2005 and 2/2012
    Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

    Comment


    • #3
      Hi Cyna,

      Fair enough response - I guess I look at it a little differently. I agree there are potentials for things to go wrong with a ICD, infected leads/malfunctions/erroneous discharging.

      But when you look at the big picture - the benefits seem to outweigh the risks and a ICD only has to save your life once for it to be worth it.... regardless of risk factors, who wants to be one of the statistics of 2 in 1000 every year that pass on with low risk HCM??

      As a community why would we say this acceptable?

      Dave

      Comment


      • #4
        There are a lot of HCM'ers who suffer mainly from other effects of HCM, such as SOB, AF, angina that are irritating, limiting or disturbing, but not life threatening such as VT/VF. An ICD is primarily intended to prevent life threatening situations such as VT/VF, or to assist in pacing. An ICD has many side effects, and the treatment should match the symptoms.

        I'll do without, and i do not feel less secure this way. But then, my symptoms do not warrant an ICD (p.AF responsive to BB's).

        Ad
        \"Hope is disappointment postponed\"

        Dx in 2004, first symptoms 20 years ago? Obstructed, A-fib, family history!

        Combined Morrow and (left atrial) Maze procedures & PVI at St. Antonius Hospital, Netherlands, March 28, 2013.

        Meds (past) propranolol, metoprolol, disopyramide, sotalol, amiodaron, aspirin, dabigatran, acenocoumarol.

        Meds (current) sotalol, dabigatran, furosemide.

        Comment


        • #5
          Vtach

          Not every HCM patient is a candidate for an ICD. While we may all be at risk for sudden death, so is the entire human population. It is a matter of choosing those with the highest risk for an ICD.

          Here is my post on the risk factors that determine ICD placement:
          http://forum.4hcm.org/viewtopic.php?...dden+death+icd

          Here is a web page from the Minneapolis Heart Institute on ICD's:
          http://www.mplsheart.com/pages/treatment_hcm.asp

          I've talked to European doctors and they tell me that British patients sometimes choose not to get an ICD, preferring to leave their lives to fate/chance/whathaveyou. (We've even had one or two people here choose not to get them either, but not many.) I remember one parent here was concerned b/c her child felt that an ICD was "cheating god."

          In my family, no on has died suddenly, through three generations. None of us has vtach or +3cm thick septums. No doctor has ever suggested an ICD to any of us.

          Comment


          • #6
            I am very thankful for my ICD. I have had no infections, no lead malfunctions, and so far no inappropriate shocks. I have a deep sense of security that it will fire when I need it. I hardly know it's there.

            Each case is unique, each person must decide along with proper counsel from their cardiologist what is best for their situation.

            Peace,

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

            Comment


            • #7
              Hi. You've already gotten some good information about ICD's and HCM from others, but I thought I'd add one more thing. I can't speak for other countries, but in the US I believe you would have a hard time convincing a doctor to give you an ICD just because you want one.

              Reenie
              Reenie

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

              Comment


              • #8
                Hi Dave,
                I have HCM. I have lots of symptoms which interfere with my quality of life, and I do not have an ICD, - nor do I want one.

                I will readily agree they are of great benefit, and in fact a life saver for those who need them, however for those who don’t need them, why run the risks involved with a series of invasions of the body?

                You say two tenths of one percent of the HCM population ‘pass on with low risk HCM.’ How many die of ‘Other’ causes? Do we protect ourselves from crossing a street? People do die from that attempt also.

                Let me explain. To the best of my knowledge I do not have VT/VF, and that problem has never been recorded in any of the testing I have undergone. I am now seventy two years old with sixteen other conditions which could cause serious complications should I opt for what I consider an unnecessary surgery in my own case. For example, I just recently investigated the possibility of a kidney transplant and was turned down because it was considered that the anti-rejection drugs needed would absolutely prove fatal in my case.

                It’s not that I am afraid of surgery – when the situation warrants it. In 2003 I had my fourth angioplasty which ran six hours over two days during which time I contracted pneumonia, my kidneys came this close to failing and I had a stroke. I was laid up for a month, and two months after that, when my strength returned, I went back for an angioplasty of both renal arteries, and the month after that an angioplasty of both iliac arteries – both procedures having complications. Since then I have had quite a number of small strokes as evidenced by an MRI of my brain.

                In 2004 my kidneys did fail, but luckily after over a week in the hospital on medication and a drip, they were able to restart them – just a day before I was scheduled to go on dialysis. Consequently, this year I have had a fistula built in my right arm (I’m a lefty.) It’s been a couple of months now, but my right bicep is still numb, my forearm and hand swollen, and I can no longer make a fist (but I think that is because of the swelling.) If I happen to fall asleep with my arm raised I will wake up with it numb, difficult to move, and quite painful while getting the blood flowing through it properly again.

                In conclusion let me say that an ICD is a lifesaver/life protector for those who have need of one, but not everybody does. An ICD absolutely has it’s place in medicine – providing evaluation indicates that it is the proper step to take – but then evaluation does not always point in that direction. We are all different and must be evaluated on a case by case basis. Everything usually carries both advantages and disadvantages and figuring out the right course to take is not always that simple or easy to do.
                Burt

                Comment


                • #9
                  no ICD for me

                  Dave,
                  I have HCM and I have chosen not to have an ICD implanted at this time. I have only one risk factor for sudden death 3cm septal measurement. I have seen an awesome HCM specialist and he and I agree that given the status of my heart and health at this time an ICD is not necessary at this time. When he tells me that I should get one I will take his advice and get it.

                  I am glad that you are so sure about having one implanted and seem to have the right path for YOU. It is important to be happy with your decisions, however you should respect the fact that there are lots of other situations and opinions besides your own. The fact that I and the others have posted here, do not have an ICD does not say that we are reckless or crazy, it simply says that we are doing what is right for US.

                  Yes the cost is probably a factor for some people but if my Dr. said I had to have and ICD I would find a way if it meant paying the hospital $20 bucks a week for the rest of my life. Until that time comes I have chosen not to put myself through the invasion of having something I don't really need yet implanted in my body.
                  2.6 Septal Measurement
                  ICD Aug 2010 (pushed into it over 6 abnormal beats...hate it!!!)
                  "I would rather have thirty minutes of wonderful than a lifetime of nothing special"
                  ~Steel Magnolia's~

                  Comment


                  • #10
                    Icd

                    I,ve had my ICD since dec. 2001, at first I was comfortable with it but lately I,m having my dopts. In FEb. of 2004 it missfired 9 times do to a bad lead. And last thursday it miss fired do to an adjustment the thec. made 2 days earlier. They also told me about 6 months ago my battery is getting low and I will probably need it changed within the year. Its not fun to have any type of surgery when your on coumidon either. I have to stay on coumidon because I had a mitral valve replaced in April of 2003. So I,m stuck with all this stuff for ever. I wish that I had done a lot more research before my family and I made the decision to go for it. So I guess I,ll just put up and shut up, and roll with what ever comes my way.
                    thanks for listening, dennis

                    Comment


                    • #11
                      Gayle,

                      I'm not telling anyone to get a ICD implanted - I just want to provoke some discussion on this matter, and have asked for peoples reasons why they haven't chose an ICD at this time.

                      I'm trying to evaluate what other reasons people have to not have a ICD installed. Mainly so I can broaden my own knowledge of some of the choices that people make in this tough situation. It is in no way meant as criticism for your own personal choice.

                      I guess I wanted to see how many people where;
                      fatalists who leave their fate to nature,
                      those that took doctors advice above all else,
                      and those that went against doctors advice because of (insert reason here)

                      Dennis, sorry to hear about your troubles with your ICD. No need to put up and shut up with this kinda thing - but unfortunately its always a slow process to get things back on the right track. take care!

                      Dave

                      Comment


                      • #12
                        Dave,

                        I still think you miss the point that part of the HCM population just not needs an ICD, medically speaking!

                        And this is not a choice that's completely up to the patients themselves, a doctor who's practicing ethically and medically justified will not, even at a patients wish, go for unnecessary treatments.

                        Ad
                        \"Hope is disappointment postponed\"

                        Dx in 2004, first symptoms 20 years ago? Obstructed, A-fib, family history!

                        Combined Morrow and (left atrial) Maze procedures & PVI at St. Antonius Hospital, Netherlands, March 28, 2013.

                        Meds (past) propranolol, metoprolol, disopyramide, sotalol, amiodaron, aspirin, dabigatran, acenocoumarol.

                        Meds (current) sotalol, dabigatran, furosemide.

                        Comment


                        • #13
                          Ad,

                          I provided some statistics that can be backed up with references if need. 2:1000 deaths per year from the part of the population you refer to that 'dont need a ICD, medically speaking'

                          My question is, who is draws the line in the sand and says its OK to let x people die with SCD because they were in the 'low risk group'. Is this a decision people are making for themselves, or are they being advised this as its current common practice?

                          Dave

                          Comment


                          • #14
                            This has been a fun topic to follow considering the doctors wanted me to make a decision last week if I was to follow their recommendation and get an AICD. Even though they are all in agreement that I SHOULD get one, their reasoning is because I have presented such a strange case of HCM that they haven't encountered before that they think it is "best". My feelings about getting one are not that conclusive.
                            NEMC's (Boston) First Myectomy 7-22-2003

                            Comment


                            • #15
                              Dave,

                              Statistics themselves do not 'prove' a fact, they merely (more or less strong) suggest a correlation between certain 'facts'. The problem is not to suggest or presume an x:y correlation, but to prove that this correlation stems from fact/figure 'A' versus fact/figure 'B' and that 'A' (like in our case) can be caused by or better prevented with 'B'.

                              2:1000 D/y in itself is not conclusive evidence to relate to all cases of sudden death as being preventable by an ICD. E.g.: if this figure applies to all HCM related sudden deaths, it may be wrong in the sense that all patients with a proper risk assesment are not accounted for (in that case the figure may be much lower, or higher depending on the group your looking at). Keep in mind that 'unsymptomatic' HCM is sometimes only discovered first by the coroner whilst symptomatic HCM is usually well supervised

                              From this text of the 4hcm.org website, the sudden death risk is even quoted as 2:100. However, it does not elaborate whether this is with or without proper assesment (or even knowledge of HCM) of the condition. Maybe you can shed some light on this as you probably quote from a source of your figure - and that source may/should refer to the specifics of it.

                              Quote:

                              Overall, in patients with Hypertrophic Cardiomyopathy there is an increased risk of premature death, which can occur with little or no warning. Sudden death can strike at any age. In the past the risk of sudden death was thought to be much higher than we believe it to be today. It is estimated that the risk of sudden death is between 1 and 2 % in the HCM population. There are members of the HCM population at a higher risk for sudden death and for those at higher risk it is advised they consult with their health care provider about receiving an implantable defibrillator.

                              End quote.

                              If the risk overall is an average that goes up because some are at a considerably higher risk, then logically all others must be at an even lower risk. Also, an ICD can 'only' prevent certain deadly arythmias and probably not all conditions - it is not a cure.

                              I hope you can elaborate a bit more on the meaning of the figures you use, because that will give the term 'risk' more meaning, individually.

                              Re. Ad
                              \"Hope is disappointment postponed\"

                              Dx in 2004, first symptoms 20 years ago? Obstructed, A-fib, family history!

                              Combined Morrow and (left atrial) Maze procedures & PVI at St. Antonius Hospital, Netherlands, March 28, 2013.

                              Meds (past) propranolol, metoprolol, disopyramide, sotalol, amiodaron, aspirin, dabigatran, acenocoumarol.

                              Meds (current) sotalol, dabigatran, furosemide.

                              Comment

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