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ICD for patients over 50

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  • ICD for patients over 50

    Hi all -

    My three sons and I were all diagnosed with HCM back in 2000. On 9/1/11, my oldest son (26) passed away from ventricular tachycardia. He had had an AFIB-caused stroke in 2010, but not everyone was calling for him to have an ICD (about 50/50). He had in fact visited his cardiologist 2 weeks prior to his passing, and had been given a relatively clean bill of health, with the need for the ICD being minimalized. He was at 33 mm on his septum wall, but was healthy overall, with no obstruction.

    Now, the consenus is that my sons and I all get ICD's owing to the increased risk factor(s), namely, my son's passing. I'm 57, ride bicycle an average of 50 miles per week (one 35 mile ride plus shorter ones), and used to play AARA regional raquetball tournaments (when the knees were better). I'm not at all overweight, don't smoke, and have a 20 mm septum wall, with no symptoms.

    I don't disagree with the insurance / prophylactic value of the ICD for my two other sons (25 & 21 - 20 & 22 mm respectively - the youngest has very mild obstruction), but does anyone have any opinions regarding the ICD in my case (and I believe that much of what we're dealing with is opinions)?

    We're being followed now by Dr. Maron at Tufts, and while I have great respect for both him and his father, the amount of conflicting information is at best confusing. I have read that the value of the ICD after 50 is actually minimal, particularly with my circumstances.

    Thoughts?

  • #2
    Re: ICD for patients over 50

    Since you have had a first degree relative die of SCD, you are at elevated risk of SCD yourself, no matter your age. While your death would not be considered "premature" to the statisticians since you are over 50, I am sure it would be considered premature to you and to your family. It is your call to make based on your tolerance level for risk. Noone can make the decision for you and it is a very personal one. That is why there is no absolute answer. There is absolutely risk involved, but only you can decide what is right for you.

    I can tell you that my own grandfather had a SCD event at 61 and died and my uncle died at 49 so these events definitely do happen later in life as well.
    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
      Re: ICD for patients over 50

      My thought is this...why would you not get one, even if it's for prophylactic purposes? If for some remote reason, it were needed, you would have it, thus extending your life possibly for many, many years? I have one, and only got one due to family history (my septal measurement is only 1.3 with no symptoms) and it saved my life a couple of years ago when I had v-fib (I was in my 30's). Never expected to need to use it based on how "mild" my HCM is compared to others, but it was there and I'm alive today because of it. HCM is very fickle and regardless of your age, you could still have an irregular rhythm that could result in your death, there's no predicting for sure or not. Why not have that extra protection in the form of an ICD?

      Just my thoughts, but if I were 57 and had HCM and a family history of SCA and death with it, I would definitely get an ICD. It's a personal choice, but it would definitely be mine if I were in your shoes. I'm so sorry about your son.

      Take care,
      Kaye
      Last edited by mandksiders; 11-07-2011, 06:20 PM.

      Comment


      • #4
        Re: ICD for patients over 50

        Hi Implement and welcome to our community. I see that this is your first post. I am very sorry to hear of your son's passing. HCM creates both plumbing and electrical problems and each is not predictive of the other. I am glad you are seeing Dr. Maron and getting the information you need. You and your sons are at high risk for an electrical issue. It doesn't matter how many miles you ride your bicycle or what kind of shape you are in. I was > 50 when I had my implant. I'm was not ready to move on. It's my "insurance plan" should I have a sudden cardiac arrest.

        Looking forward to hearing more from you.
        Linda
        Onward and Upward !

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

        Comment


        • #5
          Re: ICD for patients over 50

          I received an ICD after I was diagnosed with HCM at 44. The only factor was my family history; two brothers died from HCM related ventricular fibrillation. My ICD has fired appropriately five times since then. Three of those times were after I turned fifty.

          My father also has HCM and received his ICD in his 60's. It, too, has saved his life several times.

          Simply put, I wouldn't be writing this today if it weren't for the decision to get my ICD. You, of course, have to make your own choice, but are you really willing to bet your life?
          Karen

          Comment


          • #6
            Re: ICD for patients over 50

            Also, forgive me for not expressing my condolences on the loss of your son. This whole process must be very hard for you and I am sorry that you have to go through it at all. Please do take some time to consider what must be a very difficult and exhausting decision.
            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


            • #7
              Re: ICD for patients over 50

              I too want to express my heartfelt sorrow at the loss of your son. You and your family are certainly in my thoughts and prayers!
              K.

              Comment


              • #8
                Her is what I think Being your son Died . I would say how fast can you put one in, I have lost allot of family members, My brother was fit too and he was 48 died backing out of his driveway and his daughter died 7 years ago in her sleep at the age of 36 everyone that has been diagnosed since has an ICD Good Luck and if Dr Maron tells you you need one or they recommend one I would sure do so

                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


                • #9
                  Re: ICD for patients over 50

                  My condolences on the loss of your son. I suffered sudden cardiac arrest last year at age 56. I was taken to the right facility and survived. My ICD was implanted a week after I awoke from the medically induced coma (to prevent brain damage) Several family members have ICDs and I was misdiagnosed for over 20 years. Having had a first degree relative die of sudden cardiac arrest, I would get the ICD. Not many people survive what I did and, frankly, my advice is do not tempt fate. The chances of survival are minimal if you do suffer cardiac arrest. The ICD is a miraculous little device!
                  Last edited by MufsMom; 11-07-2011, 08:26 PM.
                  Sister diagnosed with HCM 1987, died April 2012 of "unknown causes" as her family did not want autopsy
                  My testing: 1987 and 1988 misdiagnosed with mitral valve prolapse
                  Asthma diagnosis 1991
                  Nephew diagnosed with HCM 1999
                  Previous misdiagnosis "confirmed" 1999
                  Cardiac arrest: 10/4/2010
                  Induced hypothermic coma 10/4/2010
                  ICD implanted 10/13/2010

                  Comment


                  • #10
                    Re: ICD for patients over 50

                    All -

                    Many thanks for all of the condolences, and the advice.

                    I tend to take a devil's advocate position with issues like this, if for no other reason than to better understand what underlies these decisions. Medical science is constantly advancing, and not everything I've / we've ever heard from practitioners is universally agreed upon, hence the reason for my question.

                    In my head, I agree with the logic of "why not, even if it's just for prophylactic purposes", but I had to ask. The most telling answer comes from those who have had them "fire" at this age. Heck, I want to see my grandkids (even though I have none now), so my "heart" gives me the same answer.

                    Another issue that's in my horizon now is that my 25 year old is completely balking at the concept. In a way, I don't blame him, as the culture in our home has always been that anything more than an asprin probably has unknown consequences. Just look at the advertisments for drugs on TV these days - our standing joke at home is that the cure is probably worse than the disease... It's not that we're anti-drug / treatments - it's more that we've always sort of "toughed" it out. Not bad, necessarily, but perhaps in this case, not good.

                    My 25 year old lives in Southern California, used to be captain of his soccer team in high school (albeit as goalie), and has always led a very active, healthy life, including the foods he eats. He isn't comprehending (or he's denying) the electro-physio aspects of what v-tac or v-fib can cause, regardless of what just occured to his older brother. Any thoughts on how to reach him? Dr. Maron, probably out of compassion, may not have sufficiently emphasized the urgency. He dealt with the questions we had, but stopped at the point of stressing the severity of the situation, likely as we're a close family, and completely shattered by what happened to our oldest. I wouldn't want his job...

                    This is an awesome forum, and I appreciate the opportunity to contact folks in similar circumstances.

                    Comment


                    • #11
                      Re: ICD for patients over 50

                      I was the same way-most of my family has had one major health problem or another and I have not, so I was always a minimalist, toughing out the knee injury, the bad back, etc. It was the way I took care of myself that I believe helped me find the strength to respond to the excellent treatment I received. I did begin refusing pain meds the minute I woke up from the coma. Now, as I tell people, the rules have changed and I even went to the doctor when the flu bug I was fighting was getting the better of me. It was a precaution, but one I have to take now. Yes, I have had a flu shot for the second year in a row. I'm still a minimalist, but that now includes names like metropolol and keppra (I had a seizure ) . Miraculously, I am only on five pills in the morning and three at night.

                      I am not sure how you reach your son and wish I had some good answers. If you can get him to consult with someone in California who can be blunt with him, that might help, but he is probably in denial. My niece had just been told by her cardiologist that she never needed another test because, at 40, she was too old to develop this disease. I was told the same thing. Weeks after she was told that, I was in a coma. Her cardiologist convinced her my case was different and she has refused to get a second opinion. Denial is a strong force. I hope others have some ideas on how to break through his denial.
                      Sister diagnosed with HCM 1987, died April 2012 of "unknown causes" as her family did not want autopsy
                      My testing: 1987 and 1988 misdiagnosed with mitral valve prolapse
                      Asthma diagnosis 1991
                      Nephew diagnosed with HCM 1999
                      Previous misdiagnosis "confirmed" 1999
                      Cardiac arrest: 10/4/2010
                      Induced hypothermic coma 10/4/2010
                      ICD implanted 10/13/2010

                      Comment


                      • #12
                        Re: ICD for patients over 50

                        My son and niece both have HCM also and both received an ICD in their 20's. As far as I know, neither one has ever had an appropriate discharge (although my son had an inappropriate one). I think they're okay with having had them implanted yet never having needed them. Knowing that their uncles/dad died from SCD, we're all glad they have the back up plan. You can be very active with an ICD; it probably won't slow your son down much at all. My niece goes for 5 mi. runs, even after her myectomy!

                        HCM is just so unpredictable, it really is best to have that insurance that modern science has given us via the ICD. Good luck with all of your decisions!
                        Karen

                        Comment


                        • #13
                          Re: ICD for patients over 50

                          Hello Implement,
                          I too am sorry to hear about the loss of your son. My prayers go out to you!

                          Welcome to the community. I just got finished going through the same agonizing thought process and decision you are going through. I'll be 50 in March of next year. My HCM started with arrhythmia's and bradycardia 3 years ago. Before that time, I was healthy, active, and like your family only used over the counter medications for the occasional sinus issue / cold. I always hated the feeling that I'm relying on some drug, some device, or some therapy to keep me going. Well, I had to get over all that. My A/V node mysteriously quit working so I'm 100% paced. My first pacemaker was implanted to bridge the gap between the atrium side of my heart and ventricular side. The initial pacer DID NOT have an ICD. Over time, I was diagnosed with HCM and things changed. I began having trouble exercising, being active, and when I began having trouble breathing at rest, I really got concerned. Sometimes I would wake up in the middle of the night completely breathless and think I was a goner. Of course going back to sleep was almost impossible after events like this. My EP recommended replacing my pacer with a CRT-D device and I met the criteria to have it implanted.

                          I'm better now because, just 3 weeks ago, I had my basic pacer replaced with a CRT-D. This device paces both lower chambers of the heart and the suffix "D" means that it has a built-in ICD. My EP insisted that I get the ICD -- auguring with him, I said, we'll I guess you and my wife don't want to bump into each other at my funeral and you regret not offering this to me as a safety measure. He said, worse yet, without an ICD, what if you have an event and survive, but your wife has to take 100% care of you because you lost all of your facilities in the process? I got the message -- I don't think it will ever go off, but it's there "just in case" and I'll tell you this, I sleep better at night knowing its there and ready!

                          Steve
                          A/V Heart Block 2009
                          Permanent Pacer 2009
                          Dx non-obs HCM CCF 2011
                          CRT-D 2011
                          Listed for H/T UAB 2011
                          Dx Cardiac Sarcoidosis 2012
                          Heart Transplant UAB 2012

                          Comment


                          • #14
                            Re: ICD for patients over 50

                            Sorry to here about you son, but wouldent thhat make you wont to get one more.
                            even if there only a small chance somethink could happen if you had it done it would give you pieace of mind knowing its there.
                            Been fiit and healthy has nothing to do with neding a ICD or not, its just one of thoses things.
                            when you get it done its not a big op i was in and out in a day back to work in two days .
                            Iv never had any issuses with mine and ts never missed fired it went of once but lucky it did and i had one all i would be dead

                            Margi
                            Last edited by purple_ness1; 11-09-2011, 06:58 AM. Reason: spelling
                            Margi*
                            http://margi-inskeep.blogspot.com
                            Forever Young

                            I was diagnosedwith HCM at 6.
                            Went into Atrial fibrillation so had a ICD put in at 16
                            Went into Heart failure at 17
                            Got a heart transplant at 21(2009)

                            Comment


                            • #15
                              Re: ICD for patients over 50

                              dosent matter what age you are have it put in i was against having one put in also but after a few more bouts of v-tach there was no more playing games with my life i am 54 now and had only one short episode in the two years of implant . and with the loss of your son ( sorry to read) i would not wait much longer good luck and please have it done

                              Comment

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