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My Myectomy in Boston is done!

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  • #1

    My Myectomy in Boston is done!

    Hello all!

    I am glad to be able to be back here to report that I made it! The long awaited surgery to reduce my septum went great. On July 22nd, Dr. Dearani of Mayo clinic assisted Dr. Rastagar of the Tufts/NEMC surgical staff in performing their first 2 Myectomies done back to back. Another gentleman went in the morning, I went after lunch and we both came out of it very successfully. My gradient went from 100mmHg to 0mmHg when provoked chemically. I will do a follow up in 4 weeks but my septum is now an average of 10-11 mm versus about 26mm prior to surgery. I am home recovering now and aside from the lingering persistant cough that I had from the CHF prior to surgery, my scar is minimal, and pain level is good (except for the cough part). I am very happy with the results so far and am glad that Boston will now have a new expert to perform this surgery in addition to Mayo and Cleveland. Thank you to everyone who supported and gave me information enableing me to make this decision. Thanks to Lisa for all your help and I wish I was a little less loopy on the drugs when you came by so I could have talked to you more. I continue to progress and look forward to the next few weeks when I will get my wind back again.

    Best regards,

    Doug
    Boston Myectomy July 2003
    NEMC's (Boston) First Myectomy 7-22-2003
    Tags: None
  • #2
    Re: My Myectomy in Boston is done!

    Hi Doug!

    Congratulations on a succesful myectomy! I wish you all the best in your continued recovery and progress!

    Lynn
    Lynn Stewart
    HOCM 4/2002
    Cleveland Myectomy Crew 8/2002

    Comment

    • #3
      Re: My Myectomy in Boston is done!

      Congratulations, Doug! We'll all be looking forward to progress reports. Linda

      Comment

      • #4
        Re: My Myectomy in Boston is done!

        Doug... You were doing great when I was by your room. I hope you have gotten some more sleep

        Best wishes for a speedy recovery!

        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

        • #5
          Re: My Myectomy in Boston is done!

          Doug,

          Excellent news! Hope your recovery continues to go smoothly

          Elizabeth

          Comment

          • #6
            Re: My Myectomy in Boston is done!

            Doug,

            Great new! I'm so happy for you. Take it easy and enjoy your new
            found freedom. Keep us posted on your recovery.

            Take care,

            Margie

            Comment

            • #7
              Re: My Myectomy in Boston is done!

              Hi Doug, I am so happy to hear that you are doing well, very well as it appears. It was so nice of Lisa to post an update as to how you were doing so soon after the procedure. I was anxiously waiting. Dr. Maron called me on Thursday to see how I was feeling and to hear about my visit with Dr. Rastigar. He reiterated that the two myectomies went very well and he was very pleased for all involved . He is so nice and very reassuring. Says when I am ready he will see me through the whole process. I am taking my time as you and all have suggested working on things to get ready ; physically, spiritually and mentally . I am sure my choice will be right when I am ready to go. I am actually finding it a little more of a challenge to get those around me ready and on board reality wise. I have always been at the helm in everyones life and they take alot of cues from me I am finding. They'll come along I am sure. Hey did you ever learn how many myectomies are actually done per year in the US or is this a useless fact that I just need to know . Does anyone out there know? Well Doug get lots of rest and keep on healing best wishes to you. Pam
              Dx @ 47 with HOCM & HF:11/00
              Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
              Lead failure,replaced 12/06.
              SF lead recall:07,extracted leads and new device 2012
              [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
              Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
              Genetic mutation 4/09, mother(d), brother, son, gene+
              Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

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              • #8
                Re: My Myectomy in Boston is done!

                I would guess about 120 are done each year in the USA - with Mayo and Cleveland doing about 100 and the rest here and there... I think we will be seeing Boston step up to the plate and share in some of those very soon.

                Be well,
                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

                • #9
                  Re: My Myectomy in Boston is done!

                  I was just wondering how long the waiting period for your surgery was? My husband has been told that he needs a myectomy, but the waiting list is at least 9 months, probably a year. I think that the waiting is worse than the surgery! We have considered having it done in the states and paying for it ourselves. (we live in Canada). Thanks for any info.

                  Comment

                  • #10
                    Re: My Myectomy in Boston is done!

                    Hi Doug...........
                    So glad to hear its over and you are doing well. Good luck to the future...........

                    Connie
                    The BEST is yet to come !!

                    Comment

                    • #11
                      Re: My Myectomy in Boston is done!

                      Dear Gabs,

                      The US system doesn't have a waiting list like you know it.

                      Once you decide where to go, you get put on their schedule. I know one person here who was at the specialist's for the first time and there was on open spot the very next week, so they took it. Each center has their own schedule.

                      In general, it just really depends on when the doctors can find a spot for you. Sometimes they can take you that week and other times you may have to wait a month, maybe six or eight weeks tops.

                      Also, depending on how severe your case is, they will try and make room for you. But if Canada is making you wait that long, you probably don't need the surgery next week.

                      It may even be possible to choose where you go based on when they can take you.

                      take care,

                      s

                      Comment

                      • #12
                        Re: My Myectomy in Boston is done!

                        Connie, Thank you.

                        Gabs, The wait for me was about 6 weeks. There were only scheduling conflicts that made it go so long. When it is time to get a medical intervention, it is time. The docs usually don't waste much time. Question them why so long. Make them tell you why the wait and if the waiting is for no good reason then look elsewhere, if they think that medically it is a better move then it probably is. When it comes down to it, you know what is best for you. Get all the information you can and make the most sound decision for you.

                        Doug
                        NEMC's (Boston) First Myectomy 7-22-2003

                        Comment

                        • #13
                          Re: My Myectomy in Boston is done!

                          Dear Doug,

                          The wait for Gabs is long long because every single person in Canada who needs a not-immediately-life-threatening procedure gets put on the same surgery waiting list. A friend of mine's dad waited 18 months for hernia surgery. This is just how it is done there. Unless your situation changes to critical, you don't get to jump the line. She can't go to a different hospital and get in a different line (unless she comes here).

                          For example, in Canada, my aunt (whose condition is almost identical to mine) sees her cardiologist once every THREE years. I see mine at least once a year and sometimes twice or three times a year.

                          S

                          Comment

                          • #14
                            Re: My Myectomy in Boston is done!

                            Hi Sarah,

                            I see. I knew Canada had a different health care system than ours. A Canadian friend of mine told me a little about it a few days ago. I guess there is a price to pay for guarenteed health care.

                            Doug
                            NEMC's (Boston) First Myectomy 7-22-2003

                            Comment

                            • #15
                              Re: My Myectomy in Boston is done!

                              Sarah, Where is your aunt??
                              I go to see my HCM specialist once a year and my condition is not nearly as bad as most with HCM, so I am not life threatened.
                              The only time I've had a problem with scheduling in all the years I have been seeing Dr. Wigle in Toronto is during the SARS scare and I was pushed back a few months.
                              Every great thing that has ever happened since the beginning of time has started as a single thought in someones mind.
                              So if you are capable of thought then you are capable of great things
                              Good luck and stay well.
                              Glen

                              Comment

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