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I may be getting and ICD.. would like input.

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Darren1 My real name is Darren, I have HCM and am a VERY active person that loves to exercise. Find out more about Darren1
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  • #16
    Re: I may be getting and ICD.. would like input.

    Originally posted by mbcube View Post
    Jordan - The percentage of people who have the perfect anatomy for ASA is fairly small. Sadly, what we see on the board is people who didn't have "perfect" anatomy and the surgeon (typically an interventional cardiologist) with still attempt to go through with it. I'm guessing its a "close is better than nothing or as long as we are here lets. . ." attitude. Had this been the case with you, you might had had to become pacemaker dependent after a future myectomy. Glad they backed off and you are going the "gold standard" route.
    I appreciate the thought..however let's take a small step back and be very clear on something. The team that is responsible for my care is at Northwestern Memorial ["NMH"]in Chicago. I am not sure if you have the same level of familiarity with the the Cardiac program at NMH however, it is a HCM Center of Excellence, and I would be willing to bet that the professional there...Patrick McCarthy, Robert Bonow, and Lubna Choudhoury are every bit as qualified as anyone at Cleveland Clinic or Mayo Clinic. As such, I don't have any thoughts that anything would have been gained from the choice of either of those programs. Further, in my case, NMH has several very significant advantages over either of the those facilities due to the size and scope of the facility and the broad range of national caliber expertise in related fields, in my case nephrology and asthma/COPD and pulmomary being of critical importance.

    While it seems that a majority of the members of this forum have had excellent results with Mayo and Cleveland, there certainly are other options available. I can assure you that an extensive review was considered due to the unique facts of my situation and that a fully informed decision was made to undertake the ablation first. Specifically, in my situation, the presence of Stage IIIB CKD makes the risk of acute kidney failure ["AKI"] which is a known risk associated with the use of bypass a significant risk. As such, while septal myectomy may be viewed as the "gold standard" there are specific situations where it may not be the treatment of choice in the determination of a patient's doctor. As such, I would suggest that before sharing the general observation with respect to the rush to perform an ablation and a stock comment with respect to an Interventional Cardiologist, it might be worth taking a step back to fully consider that there are potentially mitigating factors and there are other COE's besides the two that seem to come up repeatedly within this forum.

    While it might not be the conventional wisdom....and it would be interesting to hear from other people that have had the experience, if there are existing conditions in addition to HCM such as CKD or COPD, NMH or Columbia in New York just might be a first choice due to the broad scope of experience and expertise in other medical specialties.

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    • #17
      Re: I may be getting and ICD.. would like input.

      happy to report that UCLA will soon be listed on the HCMA site as a CoE... Dr's Baas and DePasquale have a nice little program running there. Also in So. Cal Cedars is a good option with skilled care.
      stay tuned for more information soon!
      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)

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      • #18
        Re: I may be getting and ICD.. would like input.

        As for the numbers at Northwestern and experience being the same as Cleveland or Mayo - sorry the that's not really accurate - is Northwestern very good, yes they are - however Mayo and Cleveland are the largest volume programs in the world with the longest history and the most stable teams. This does not mean quality care can not be found elsewhere.
        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


        • #19
          Re: I may be getting and ICD.. would like input.

          Thanks for the update and redirecting the thread. We do need a COE in SoCal !
          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


          • #20
            Re: I may be getting and ICD.. would like input.

            Originally posted by Lisa Salberg View Post
            As for the numbers at Northwestern and experience being the same as Cleveland or Mayo - sorry the that's not really accurate - is Northwestern very good, yes they are - however Mayo and Cleveland are the largest volume programs in the world with the longest history and the most stable teams. This does not mean quality care can not be found elsewhere.
            Lisa
            Thanks for the clarification....I have the source materials for the numbers I references somewhere and would gladly share them. The point about it being possible to obtain quality care in more than just two locations is worth emphasizing as there certainly isn't a lock on competency in single locations for anything. As indicated, in my specific case, the need for access to additional specialties, and a decades long history with both the institution and several specialists was the critical factor in my decision. Its also worth pointing out that the surgeon I have selected was actually recruited away from Cleveland. Finally assume that seeing the expertise spread out to a number of additional locations is certainly beneficial. I have a fairly decent idea of the size of the HCM population at NMH at least in terms of cardiology resources. Is that information readily available in a public forum for other facilities to provide the opportunity for a prospective patient to make a quantitative comparison?

            Comment


            • #21
              Re: I may be getting and ICD.. would like input.

              Lisa, thanks for correcting the record. I won't criticize Jordan's decision because of his prior relationships with the pros at Northwestern and the complicated nature of his conditions, but I was referred to Mayo by the Johns Hopkins Center of Excellence and their credentials are nothing to scoff at. All things being equal, the most expert and experienced myectomy surgeons are at Mayo and Cleveland. Having said that, I respect and understand Jordan's decision to go with Northwestern.


              Sent from my iPhone using Tapatalk
              Joel

              Born 1955 in USA, DX'd w/HCM 1996, in United Kingdom
              2011, 2013, 2014 ablations for Afib and flutter in UK, INOVA Fairfax, VA, and Johns Hopkins
              June 2014 DX HOCM at Johns Hopkins
              October 2014 Myectomy and Cryomaze at Mayo Clinic

              Comment


              • #22
                Re: I may be getting and ICD.. would like input.

                It's a testimony to the various centers that their patients tend to be boosters: how many institutions is this true of? Institutions that are listed as COEs have all satisfied a number of requirements. One can get excellent care for HCM at all of them - that's why they're called centers of excellence!

                That said, they're not all equivalent. I don't think there's any question that Mayo and Cleveland see (by far) the largest number of HCM patients and generally have the most collective experience with HCM. Should every HCM patient go to one of them? No, nobody has suggested that; there are lots of good reasons for many people to go to one of the other centers, including their locations. In fact, if all HCM patients went to those two centers, the waiting rooms would become very full!

                All else being equal, go to the center with which you're comfortable. If you like Dr. A, or want your HCM specialist to be at the same institution as some of your other docs, then by all means, use that as part of your decision-making. I've told people on this board that they should go to a COE. Lots of times. But except for a very special situation (surgical expertise for apical HCM is, simply, at Mayo and nowhere else), I've avoided telling them to go to one rather than another.

                As for me, I'm proud to say that when I chose to go to the Cleveland Clinic for my myectomy (I never went to a COE before that - didn't think I needed anything more than what I got from my local doc), I did so because (a) they had high volume, and thus considerable experience, and (b) I once lived in Cleveland, so know the place a bit. That's not the strongest basis for making important decisions, but I think it was good enough. I've been happy with my care there, but I wouldn't tell others that there's anything wrong with choosing another COE.

                Gordon
                Myectomy on Feb. 5, 2007.

                Comment


                • #23
                  Re: I may be getting and ICD.. would like input.

                  Am I missing something or can any qualified doctor place an ICD for an HCM patient? The specialist here in San Diego (Dr. Joseph Blatt at Scripps Hospital in La Jolla) trained at OHSU and Univ. of Washington (both listed as COE's). He has done several hundred surgeries. Is there a special way he needs to do one for my HCM? Would he be qualified? Is there a benefit to me traveling and/or paying for a doctor located at a COE (I'm not having a ablation/etc)?

                  Thanks again for the input! It's invaluable.

                  -Darren

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                  • #24
                    Re: I may be getting and ICD.. would like input.

                    Any qualified EP surgeon can implant it. Most EP's deal with patients with unusual conditions so this isn't an issue. Since you will likely need to visit them at least once a year (and do remote data dumps quarterly) having them local is a plus. I would however, make sure your EP does consult with your HCM doctor as so that both are on the same page as to therapy, and protocol. I'd hate to have someone who's HCM doctor wanted them to have a 2-lead, and the EP only implanted a single just because they didn't communicate.
                    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


                    • #25
                      Re: I may be getting and ICD.. would like input.

                      Now not all EP are qualified to place the device sub-pec. I know mine called in a thoracic surgeon to implant mine. I just went back to him to have it changed due to the battery.
                      Diagnosed at age 21
                      First ICD 12/07
                      Vfib 12/14 With appropriate shock
                      Replacement ICD 10/14
                      Sub-Pectoral

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                      • #26
                        Re: I may be getting and ICD.. would like input.

                        Thanks Everyone! Great feedback!

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