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How did you chose?

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Colorado213 Wife to husband diagnosed with "a severe case of HOCM" according to Dr. Salcedo at University Colorado Med Hospital HCM Center March to June 2014 I'm the main researcher and planner, so here I am! Mother to 3 young boys who will be tested in the coming months as soon as we get daddy situated. Find out more about Colorado213
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  • How did you chose?

    For those that have traveled to a Center of Excellence, how did you choose to get your care and surgery?

    thanks!
    Megan, wife to Husband, Justin with HOCM
    Husband diagnosed at 37 when taken to ER due to CHF on vacation in San Diego at Pomerado Hospital, March 2014
    Seeing Dr. Salcedo in UC Med Hospital Denver upon diagnosis
    AICD/Pacemaker July 2014 @ UC Med Hospital, Denver with Dr. Nguyen
    Myectomy at Cleveland Clinic October 2014 with Dr. Smedira
    Parents to 3 boys, 11, 8, and 6 all currently clear from recent echos

  • #2
    Re: How did you chose?

    Hi. I went to the COE nearest my home, which is Johns Hopkins. I see you are in Colorado. I believe there is one there. There is a list of COEs on this forum. I wish you well.
    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


    • #3
      Re: How did you chose?

      I rec'd my diagnosis at a COE in New York City at a time that I knew I would be moving to southeast coastal Georgia. I learned at the time that the course of meds they started me on may not work forever and that there was a chance I would have to have a myectomy. So knowing that there was not a major HCM center in GA, I knew I would have to travel in any event if the time came.
      Having just stayed in St Lukes Roosevelt in NY for an angiogram and the dosing of my Norpace, I crossed that off my short list for a few reasons. Then from reading posts on this board, there seemed to be a trend towards Tufts (I have some family near there), Cleveland and Mayo (no offense if I left off other good centers). I also went to an HCMA conference in NJ and had a chance to meet with Doctors from both Mayo and Cleveland, and I was very impressed.
      So after moving to GA, I figured it would be a good time to establish a patient record at a COE to keep in my back pocket should I get into trouble in the future. I considered the volume of HCM patients at Mayo and Cleveland and understood the experience that would bring to either place. Then it was a matter of flipping a coin, looking at a map, then considering airline connections. With that "scientific research" complete, I chose Cleveland and soon booked an evaluation with Dr Lever.

      Flash forward 8 years, the "average" time cited by my DR in NY for the meds to work before needing surgery, and sure enough, I was hitting a wall. Establishing that relationship with Dr Lever 8 years ago was one of the best things I ever did, as it allowed me to get an appointment with Lever right away for a second evaluation and referral for surgery.

      I'm really happy with Cleveland Clinic, both in terms of care, treatment and the results. From the stories I read here about Mayo, it seems both institutions have similar corporate cultures from the top down, and the kind of volume that generates so much experience. Cleveland was also just voted #1 in the USA for cardiac care and cardiac surgery for the 20th year in a row (US News and World Report). US News also voted Mayo #1 Hospital overall.
      Last edited by angusjcampbell; 07-28-2014, 09:20 AM.
      Angus Campbell
      Golden Isles Region, Southeast Georgia, USA

      Dx'd HOCM at St Luke's Roosevelt, New York City, 2005
      Myectomy Jan 9th 2014 at Cleveland Clinic
      Drs Lever and Smedira

      Comment


      • #4
        Re: How did you chose?

        I met several doctor's from COE's at a HCMA conference. I have long believed that one has to have a trust and bond with their advisors. Having a beer with my doctor was a great way of developing this relationship.
        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


        • #5
          Re: How did you chose?

          I wanted to go to one of the centers that sees a LOT of patients - which meant Tufts, Cleveland, or Mayo. I didn't see much basis for making a choice based on medical criteria or anything like that, so I chose Cleveland, just because (a) there's a nonstop flight there from Tampa, where I live, and (b) I know the city. I'm very happy with my choice, but for most of us (there are a few exceptions), I think criteria like that, or flipping a coin, are going to be about as good, if you're choosing between those places.

          Gordon
          Myectomy on Feb. 5, 2007.

          Comment


          • #6
            Re: How did you chose?

            I too met doctors from both Cleveland and Mayo..... I also read experiences of those on the Forum that had surgery at Mayo and Cleveland. Still they were neck and neck except for possible differences in direct flights......I didn't like choosing based on travel convenience.....though it is very sensible. I believe that we all have a sense of what is in our highest and best interest ....It's.called our intuition or higher guidance. So when all the facts are gathered and the answer does not become evident....I take some quiet time and sit in my heart and picture myself in each situation....I don't "think", I "feel"..... And usually one situation feels more peaceful, more joyful, more "right" more "me".... And that's the one I choose. It's a personal decision, based on facts and intuition.
            Best of luck making your choice....Mayo was my right choice, yours may be Cleveland or Mayo or Tufts.
            After years of symptoms:
            Officially Diagnosed HOCM 2006
            Myectomy 3/11/13 at non-COE
            Extended Myectomy 7/23/14
            At Mayo with Dr. Joseph Dearani

            Comment


            • #7
              Re: How did you chose?

              Redteamer, we started with an HCM center in Denver but upon research and intuition (much like Jill says) it has become necessary to look for an COE like Mayo, Tufts, or CC.
              In the end, I think it'll come down to timing: who will get my husband in first.
              Megan, wife to Husband, Justin with HOCM
              Husband diagnosed at 37 when taken to ER due to CHF on vacation in San Diego at Pomerado Hospital, March 2014
              Seeing Dr. Salcedo in UC Med Hospital Denver upon diagnosis
              AICD/Pacemaker July 2014 @ UC Med Hospital, Denver with Dr. Nguyen
              Myectomy at Cleveland Clinic October 2014 with Dr. Smedira
              Parents to 3 boys, 11, 8, and 6 all currently clear from recent echos

              Comment


              • #8
                Re: How did you chose?

                In our case, logistics are also going to play a big role. We were seriously considering Mayo but Cleveland is easier for us to fly to and we have a support system set up there (friends and organizations) which will relieve a lot of the stress of being hospitalized far from home.

                Comment


                • #9
                  Re: How did you chose?

                  As silly as this sounds, it was the direct flight to Cleveland, the fear of dealing with NYC that took me to my COE. Funny thing is, there is no longer a direct flight, so I'm glad that part is behind me.
                  Onward and Upward !

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

                  Comment


                  • #10
                    Re: How did you chose?

                    If making all of your arrangements stretches your visit into the winter time, add an extra day for travel to get you there early. We went to Cleveland in the wake of a major winter snowstorm, traveling on a Sunday to get there in time for pre-op tests to start on Monday. We should have scheduled to arrive a day early on Saturday. After missing connections, it was only my wife's Gold Status with Delta that got us there on the last available stand-by seats. Same would apply to Mayo, being even farther north.

                    Originally posted by galileegirl View Post
                    In our case, logistics are also going to play a big role. We were seriously considering Mayo but Cleveland is easier for us to fly to and we have a support system set up there (friends and organizations) which will relieve a lot of the stress of being hospitalized far from home.
                    Angus Campbell
                    Golden Isles Region, Southeast Georgia, USA

                    Dx'd HOCM at St Luke's Roosevelt, New York City, 2005
                    Myectomy Jan 9th 2014 at Cleveland Clinic
                    Drs Lever and Smedira

                    Comment


                    • #11
                      Re: How did you chose?

                      Hey Gallilee....
                      Traveling internationally is a much more stressful situation than traveling locally......You are very smart to consider your support needs and the specifics of diet etc required by your faith and traditions. I'm glad there is a community available to you near one of the USA COEs. The Neuro chemicals generated by being under stress are not conducive to healing. Taking action to minimize stress is a wise and healing choice with only positive side effects. Leaving a day early as Angus suggested, staying an extra day....all can be helpful.
                      I knew I had tests at the crack of dawn on a Monday and had never been to Rochester....So, I came in Saturday and spent the day getting to know the neighborhood and hotel. It was very relaxing.
                      Last edited by JillC; 07-29-2014, 12:23 PM.
                      After years of symptoms:
                      Officially Diagnosed HOCM 2006
                      Myectomy 3/11/13 at non-COE
                      Extended Myectomy 7/23/14
                      At Mayo with Dr. Joseph Dearani

                      Comment


                      • #12
                        Re: How did you chose?

                        As it happens, Dr. Abraham at Johns Hopkins has referred me to Mayo Clinic for my septal myectomy. I am grateful that they had the integrity and concern for me to refer me to the place they believed I could get the best care. Having said that, I'm now a great believer in intuition and I'm sure you will get great care at any one of those places.

                        Originally posted by Colorado213 View Post
                        Redteamer, we started with an HCM center in Denver but upon research and intuition (much like Jill says) it has become necessary to look for an COE like Mayo, Tufts, or CC.
                        In the end, I think it'll come down to timing: who will get my husband in first.
                        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


                        • #13
                          Re: How did you chose?

                          Much like Mark, I chose Mayo because I had an opportunity to meet my cardiologist and surgeon at the HCMA meeting and was impressed with their presentations and felt that I had a good rapport with both of them. Also, it was a lot cheaper to travel and stay in Rochester as compared to Cleveland and I liked that it was a small town atmosphere as compared to a big city since I live in a big city, I wanted to have a slower and nicer place to recover.
                          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.

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