If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

We're In Boston

Collapse

About the Author

Collapse

Janet McClure Single mother to two amazing kids. James is 13 and has HCM. Emily is 11 and recovering from TBI. Find out more about Janet McClure
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • We're In Boston

    Well after an hour delay at the airport, we finally got on the plane about 4:00 p.m. The weather we had in Atlanta caused delays for most planes. The flight was not too bad out here. It was only a two hour flight from takeoff to landing. We were tired when we got here so we only ordered room service and chilled.

    Our hotel is right across the street from the hospital. James had a stress test at 11:00 a.m. and then he had an EKG at 12:15 and we saw the doctors at 12:30 p.m. Dr. Martin Maron was wonderful. He confirmed that James definitely had it and that he got his measurements at 1.9 mm. It should be around .9. James does not have an obstruction right now which is good. He does think that it could get larger as he continues to grow. Dr. Link came in also and after looking at all the test and talking about James' dad and Uncle, he decided they definitely need to do the AICD defibulator. They can't get him in on Monday so they are going to do it Tuesday morning. We have to go Monday and have blood work done and then be at the hospital Tuesday at 9:00 a.m. He will stay overnight Tuesday night and if all goes well he will leave the hospital Wednesday. They don't want him to travel until Thursday. So right now we will not go home until Thursday. They also said they did want him coming back here each year to be followed up with the Center here.

    We went over to Beth Isreal Hospital where they did a special Cardiac MRI. They put medication in his veins to show contrast with his heart. Once James has the AICD he will not be able to have a MRI again. I will get the results from the MRI on Monday.

    James is handling things pretty good. Dr. Maron asked him what he thought about getting an AICD and he said he would feel better with it. After we got back to the room we were listening to the news and they had on there about a 18 year old basketball player that suddenly died on the basketball court. After an autopsy was done, they found that he had the same disease that James has. James heard it and we told him that that could not happen to him once he has the AICD.

    So anyway, we will be here for a week and hope to see a few Boston sites. I will say that people here in Boston are not the same as in the South. I have not found any biscuits yet or any sweet tea. Probably won't either.

    The doctors did tell us they thought that once he healed he would be able to play rec ball. They talked about how he is a 12 year old child and cannot stop living. With the AICD he will always be protected. Thanks for all your thoughts and prayers. We will keep you posted as we get closer to the surgery! Love, Janet and James
    My son James, Age 18, diagnosed in January, 05. AICD - 4/5/05 at Tufts NEMC. Myectomy -1/25/06 at NEMC. Currently having heart failure issues. James' father and uncle both have HCM and AICDs. James dad, Carlton, had Myectomy at Cleveland on 4/10/06. James Medtronic recalled lead fractured 5/26/11. Had Biventricular Cardiac Resynchronization AICD put in on 6/3/11 Emory Midtown.

  • #2
    It sounds like James is in the best of care. Glad to hear he will be getting an AICD. Best of luck to you all.

    Pam
    It's not what you gather, but what you scatter that tells what kind of life you have lived.

    Dx in Feb/99. Obstructed. No ICD, no surgeries, no family history. 2 sons ages 14 and 6.

    Comment


    • #3
      Well Georgia,
      I think that’s just peachy. James is getting the best of care from the best of doctors and will be protected in the best possible way. (That’s a lot of bests.)

      I don’t know, but you can check on the internet to see if they have Gray Line tours in Boston – or some other tour service. That way you can see the most with the least stress possible. Now that you’re up in Yankee land, you might just as well see all you can.

      Oh yeah, don’t forget to rest up a bit too.
      Burt

      Comment


      • #4
        Originally posted by Burton Borrok
        I don’t know, but you can check on the internet to see if they have Gray Line tours in Boston – or some other tour service. That way you can see the most with the least stress possible. Now that you’re up in Yankee land, you might just as well see all you can.
        Burt,Burt Burt- 2 major faux paws.
        If you're going to do a riding tour of Boston you do so by Duck Boat. They do have trolly tours, they do have bus tours, but Duck Boats are they way to see Boston!!
        2nd - This is baseball season and this is Boston - They word Yankee can not ever be used in a descriptive way when refering to this region.
        Ohh boy, even though its pouring rain I'm going to have to take a walk.

        Janet / James
        You're in good hands at NEMC. I don't know about finding biscuits or sweet tea, but make sure you try some 'chowda'.

        Good luck with the procedure.

        -boz
        • 1995: Brigham & Women’s Hospital - diagnosed with Atrial Fibrillation
        • 2004: Falkner Hospital – diagnosed with Congestive Heart Failure
        • 2004: Tufts NEMC– diagnosed with “End Stage” Hypertrophic Cardiomyopathy
        • 2005: Genetic Test – Laboratory for Molecular Medicine. HCM confirmed – missense mutation detected in TNNT2 gene
        • 2009: Brigham & Women’s - Third cardioversion begin Amiodarone for AFib
        • 2011: Brigham & Women’s - Medtronic ICD implant

        Comment


        • #5
          Janet

          That is great news and i will be thinking of you both with the ICD surgery, just tell James mine is my best friend, i would be more nervous without mine too

          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


          • #6
            Janet,

            It sounds like things are going really well for your son and the trip to Boston is getting done what needs to be done. Your son sounds like he really understands everything, and that is important. I'm glad for him that he can return to rec ball too, and won't have to feel like an invalid. He can go home and be a kid once all this is done! That is really, really important! And now since you are there till Thursday, I hope you can get him to a Sox game. Opening games should be in the next few days (I know Cinci is Monday- the day my kids go back to school- we were hoping to catch a game during spring break.) Take care!

            Jill
            Jill

            mother of Kyle, now 19 yrs old- diagnosed after 5 years and 2 years later "undiagnosed"

            Comment


            • #7
              janet,
              You have a very wise young man - and likely this is thanks to his mothers hard work. James is in great hands. Enjoy your weekend in Boston.
              If you need anything call the office - I will check for messages thoughout the weekend.

              Best wishes,
              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


              • #8
                Janet,

                This is all very good news to hear! Sounds like James is getting great care. Are you going to have a chance to meet any of our Boston area HCM'ers while you're there?

                Jim
                "Some days you're the dog... some days you're the hydrant."

                Comment


                • #9
                  Hey Boz,
                  About your crediting me with two major Faux-Pax – let me just say this;

                  The term Yankee is a derivative of Yankee Doodle; a term of derision used by the British against the American colonists, and actually was used with more frequency against the citizens of Boston then against the citizens of New York. The term however was used in regard to all the American colonists – or at least the ones who apposed British rule. Only later was it aimed at those from just the North East, and much later still, was it used as a name for a certain baseball team, who in deference to your feelings, shall remain nameless.

                  As is frequently the case, a term of derision is turned around and it becomes a badge of honor by those it was used against. This is even true of the British Bulldog, originally used in a cartoon deriding the Brits.

                  Now, about touring Boston – I didn’t know, nor claim to know, the best method of seeing the city. I was aware that Gray Line Tours conducts tours of many cities and places of interest so I mentioned them, or some other company that will provide a tour and let the observers relax while touring. (I did not mention the walking tour, although I was aware of it, for that very reason.)

                  You recommended the Duck Boats, which come only vaguely to my mind – (but how you expect to see much of the city from a boat being pulled by a duck is beyond me.) Next thing you will know, you will be recommending ‘Pigeon Flights’ or some other outlandish method of transportation. Boy, it’s lucky for you I like you so much, or I might get those pigeons together and you’ll be reading a headline like – ‘Burt’s Birds Bomb Bean Town.’

                  ‘B’ good now – and keep in touch,
                  Burt

                  Comment


                  • #10
                    I hope you understand that I was poking fun at ya. Maybe too late for a good April Fools prank, but all in fun none the less.

                    You have to understand that Boston is a little different today than it was in colonial times. Yankee means only one thing to virtually all that live here . . . it means pin-stripes, George Steinbrenner and the evil empire. It is amazing how united this city is when it comes to despising the town’s biggest opponent in Major League Baseball. Tune in to ESPN2 tomorrow evening to get a feel for the greatest rivalry in sports when the 1st contest of 2005 is played in Yankee Stadium.

                    The Duck Tours kind of play into the “all-that-is-Boston” theme as well. To suggest that a visitor patronize another business to see Boston is kind of like, well wearing a Yankee’s baseball cap down Boylston Street.

                    Sorry if I came off too snippy.
                    • 1995: Brigham & Women’s Hospital - diagnosed with Atrial Fibrillation
                    • 2004: Falkner Hospital – diagnosed with Congestive Heart Failure
                    • 2004: Tufts NEMC– diagnosed with “End Stage” Hypertrophic Cardiomyopathy
                    • 2005: Genetic Test – Laboratory for Molecular Medicine. HCM confirmed – missense mutation detected in TNNT2 gene
                    • 2009: Brigham & Women’s - Third cardioversion begin Amiodarone for AFib
                    • 2011: Brigham & Women’s - Medtronic ICD implant

                    Comment


                    • #11
                      Boz,
                      Being a NJ Girl - which as ya know is rather much like our neighbor NY - I must say that Boston will truely win those bragging rights when they get about 20 more WS under their belt :P

                      Later!
                      Lisa
                      (in wise guy mode!)
                      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


                      • #12
                        Ahhh Good one Lisa!

                        Two years ago our local Babe Ruth organization (Baseball for 13-15 year olds) hosted the Babe Ruth World Series. Part of the experience requires all team members – 11 Teams from all over the country, 1 International team - to be housed with local families – no hotels for the players.

                        I was mortified to learn that the 3 kids we would be housing for a week were with the Mid-Atlantic Champions – Voorhees/Gibbsboro, NJ. I imagined a week of misery having to listen to stories about the NY Yankees.

                        Turns out they were all Philadelphia Philly fans – hated the Yankees too, and all went well. In fact, they and their parents have become very good friends – sure to last a life time.
                        • 1995: Brigham & Women’s Hospital - diagnosed with Atrial Fibrillation
                        • 2004: Falkner Hospital – diagnosed with Congestive Heart Failure
                        • 2004: Tufts NEMC– diagnosed with “End Stage” Hypertrophic Cardiomyopathy
                        • 2005: Genetic Test – Laboratory for Molecular Medicine. HCM confirmed – missense mutation detected in TNNT2 gene
                        • 2009: Brigham & Women’s - Third cardioversion begin Amiodarone for AFib
                        • 2011: Brigham & Women’s - Medtronic ICD implant

                        Comment


                        • #13
                          I remember when I was up in Bean Town in September it was awesome. All, there was was talk about this being "the year" would the curse be reversed and all that. I think the most interesting thing was the friends I was staying with. The grandparents were like 90 years old didn't own a TV. They didn't believe in it radio was always the best way. So, republican that my friend was still called a liberal because he voted for JFK once! But, back to the story when it was time for the Soxs to play. Well, it was a family affair! Everybody was over Grandparents, Aunts, Cousins, you name it. We, all sat on the floor ate pizza and rooted for those SOXs. Even though I'm a Florida girl I knew better than to root against them. It would have been a long walk to the airport. Afterwards, we would all sit down and play Aggravation. Has anyone else played that game before?Oh, my goodness I've never seen a four foot three 90 year old woman become so ruthless.

                          Oh by the way Janet, if you get a chance to stop by the First Street Church they have some really cool historical stuff in that area. It was the place where America the Beautiful was ever sung and Paul Revere, Ben Franklin's Parents. and Mother Goose are all buried there.

                          Mary S.

                          Comment


                          • #14
                            Originally posted by Boz
                            You have to understand that Boston is a little different today than it was in colonial times. Yankee means only one thing to virtually all that live here . . . it means pin-stripes, George Steinbrenner and the evil empire. It is amazing how united this city is when it comes to despising the town’s biggest opponent in Major League Baseball.
                            This is more than true than ever!!!

                            Comment


                            • #15
                              Originally posted by Boz
                              I hope you understand that I was poking fun at ya. Maybe too late for a good April Fools prank, but all in fun none the less.

                              You have to understand that Boston is a little different today than it was in colonial times. Yankee means only one thing to virtually all that live here . . . it means pin-stripes, George Steinbrenner and the evil empire. It is amazing how united this city is when it comes to despising the town’s biggest opponent in Major League Baseball. Tune in to ESPN2 tomorrow evening to get a feel for the greatest rivalry in sports when the 1st contest of 2005 is played in Yankee Stadium.

                              The Duck Tours kind of play into the “all-that-is-Boston” theme as well. To suggest that a visitor patronize another business to see Boston is kind of like, well wearing a Yankee’s baseball cap down Boylston Street.

                              Sorry if I came off too snippy.
                              Hey Boz,
                              I really enjoyed your comments, understood it was all in fun, and I hope you realize I was responding in kind. (I really do know that the Duck Boats are not pulled by ducks.)

                              So you claim that Boston today is different then it was in Colonial Times. (Did they finally get all that tea out of the bay? It was making the fish taste funny.)

                              By the way, in my day I was a Yankee fan – but I haven’t been following baseball these past thirty years or so. So you say Boston now has a team too? Major league? And they all wear sox? Boy, I guess Boston did change after all.)

                              And besides – if you did come off snippy, I never noticed it. So there!
                              Burt

                              Comment

                              Working...
                              X