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SparkyJW Find out more about SparkyJW
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  • Going to Boston!

    To Tufts to see Dr. Martin Maron. But not til July! The 18th and 19th. (Which happens to coincide with a Red Sox/ Yankees home stand! Now to get tickets for that!)
    I guess a 2 month wait is normal to see someone with Dr. Marons reputation? My cardiologist was originally going to send me to Cleveland Clinic, but I asked him if there was anyone in Boston who was on par with the Docs in Cleveland. Being as I am from Boston originally.
    Ill be having the (typical) Echo, Stress and Cardiac MRI on Thursday and seeing Dr. Maron on Friday. Gonna have to search for a list of questions to ask when I am there, as I seem to forget everything when I end up at a Doctors appt! Lots to learn! Wish me luck! ----Kev
    Dx'ed 4/11 with "left ventricular hypertrophy"
    Re-dx'ed by a new cardiologist 4/13 at age 51 with possible HCM.
    Went to Tufts 7/13 and verified HCM with obstruction.
    Going in for a Myectomy and a Maze procedure on 11/13/13

  • #2
    Re: Going to Boston!

    You're going to a great place, so you don't actually need luck!

    As for a list of questions to ask . . . some of that will depend on what you already know. Why don't you call the HCMA office and talk with them about the questions you should ask? That's one of the things the HCMA helps with.

    Gordon
    Myectomy on Feb. 5, 2007.

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    • #3
      Re: Going to Boston!

      Hi Sparky,
      I also waited 6 weeks to see Dr Maron. It was worth it in the end. The entire group at Tufts has treated me and my family so well.
      I happen to have a HCM center just 5 minutes from my house in NJ, (not a CEO) and I travel the 3.5 hours to see Dr Maron multiple times per year.
      Write everything down, you have plenty of time to think of questions. If you don't have a place to stay, check out the Marriot Courtyard in the Theater District. It is across the steet from Tufts. They usually offer a special rate for Tufts patients. Call directly. There is also the Double Tree across the street, but I like the Marriot more.
      Michael
      Dx with HCM November 2009
      Myectomy and Mitral Valve Repair @Tuft's March 2010

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      • #4
        Re: Going to Boston!

        Glad you have the appt set up - it will be well worth it - wishing you the best - Linda

        Comment


        • #5
          Re: Going to Boston!

          tufts is where I went and I live in nj. I also grew up in boston so I visited family at the same time. his crew was great, I went on my first visit thinking he would give me better meds but he said myectomy and maze. tuff 4hour drive home alone. Had it done last year and getting ready to have my kids screened with him. he will answer your questions and if you forget one you can email him and he will get back usually within 24 hours.
          Go Sox

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          • #6
            Re: Going to Boston!

            I had great care at Tufts. Dr Maron and Dr Rastegar were a great myectomy team for me. I had a few problems, but everything worked out great in the end. I am coming up on three years post myectomy and I haven't felt this good in over twenty years! I am moving from New Hampshire to Florida and I am considering staying with Dr Maron. I would just fly up once a year and get a check up and then visit family. You can't go wrong getting your treatment at Tufts. They do a super job.
            Diagnosed HCM 1998
            Myectomy June 2010
            50 mg Toprol XL

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            • #7
              Re: Going to Boston!

              Thanks for all the great info! And support! 3 weeks to go and honestly I cannot wait to get there to talk to a Doc who knows about this as well as the meds I am taking. I was told by my cardiologists nurse that the effects I am having are par for the course, and see how it goes after a month.

              Well I am not liking them so far. Not to whine, but I am tired of being tired and feeling out-of-sorts! I sometimes think its affecting my mind also. Forgetful, (well more than normal! ) kinda moody and such. Kinda like a lil depressed and/or anxious. And oh did I say tired?! Dizzy a bit,too, sometimes even to the point of wondering if I should be driving. Of course if it got bad enough I would stop... All in all things seem to definitely be affecting my personality. Haha! I definitely have a hard time concentrating any more.

              But the good thing is after starting the 2x a day metoprolol I haven't had any Afib episodes. Dont know if thats attributable to that med or not. Don't mind me, just ranting. ---- Kev


              Sent from my 5.
              Dx'ed 4/11 with "left ventricular hypertrophy"
              Re-dx'ed by a new cardiologist 4/13 at age 51 with possible HCM.
              Went to Tufts 7/13 and verified HCM with obstruction.
              Going in for a Myectomy and a Maze procedure on 11/13/13

              Comment


              • #8
                Re: Going to Boston!

                I feel your pain! Yesterday I finally had a Dr not say well it is what it is. It's not life threatening at this point and you have the ICD if needed. Well that's not good enough! I want some quality of life! Good luck to you!



                Beejay

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                • #9
                  Re: Going to Boston!

                  Thanks Beejay and best wishes to you also, with all that you're going through. Sometimes I guess it just helps to vent, and it does help that people here know what you're going thru. HCM isn't as well known as other heart problems, but it can sure throw a curveball at ya. I sure am seeing a learning curve here!


                  Sent from my 5.
                  Dx'ed 4/11 with "left ventricular hypertrophy"
                  Re-dx'ed by a new cardiologist 4/13 at age 51 with possible HCM.
                  Went to Tufts 7/13 and verified HCM with obstruction.
                  Going in for a Myectomy and a Maze procedure on 11/13/13

                  Comment


                  • #10
                    Re: Going to Boston!

                    SparkyJW - Your going to one of the few doctors that actually grew up learning about HCM from one of the foremost experts in the field. Marty will take good care of you.
                    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


                    • #11
                      Re: Going to Boston!

                      And mccube, you are certainly right! Dr.Maron and Noreen were GREAT! Very impressed to say the least. Still wrapping my brain around the whole thing, as it looks like I will be going back to Boston for some surrrrrgeryyy. Ugh.
                      But I couldn't have asked for better people to deal with. My Wife Dianne and I were very impressed! Sure makes dealing with all this a whole lot easier when u have people u feel you can trust! 😄


                      -----Kev
                      Dx'ed 4/11 with "left ventricular hypertrophy"
                      Re-dx'ed by a new cardiologist 4/13 at age 51 with possible HCM.
                      Went to Tufts 7/13 and verified HCM with obstruction.
                      Going in for a Myectomy and a Maze procedure on 11/13/13

                      Comment


                      • #12
                        Re: Going to Boston!

                        SparkyJW, So true. I firmly believe in gut feelings and Marty was one of those people that truly has your best interest at heart (no pun intended). I met him and my doctors from Mayo at my first HCMA conference. There is something about discussing your newly diagnosed disease with an renowned expert over a beer that makes you more comfortable! Every patient I met of Marty's (sorry, Dr. Maron) spoke so well of him and his staff. I made my decision that weekend who my doctors will be. I recommend that anyone interested in learning more about HCM and the doctors that are experts in it attend the next conference.
                        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

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