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Going to Boston NEMC with Son

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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
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  • Going to Boston NEMC with Son

    Well I got to speak to Dr. Martin Maron last week from NEMC in Boston and was very impressed with him calling me himself. I explained to him what was going on with my son and he said he definitely wanted us to come up there and let them evaluate him. He even suggested with the rapid growth in his septum and his family history that I consider going ahead and doing a AICD while we are there. Right now they have us scheduled to be there on April 8th and have a stress test as well as see the doctors that Friday. He said we really should not wait much longer than that.

    Then on Monday, April 11th, he said they could go ahead and do the AICD. I hate that my son would have to go through that. But I like having the security it offers. James' father and uncle both have AICD and have been shocked. They both have also had VTach and other arrythmias. I haven't yet told my son what they will probably do while we are there. I am afraid to. But I know that he is very tough and will probably do just fine with it.

    Anyway, that week of the 4th is our Spring Break here and I would like to go a couple of days early and see some cool sites. Any suggestions on what hotel we should stay in and what a 12 year old boy would enjoy doing. He will actually be 12 at 12:01 a.m. on March 16th, so is birthday is just a couple of hours away.

    I feel a bit overwhelmed again with all that my kids face. Can you believe that even the horse I bought my daughter for Christmas got sick too. We had a bout with Colic last Saturday and I spent six hours in her stall giving her 4 HUGE bags of I.V. fluid. If I left the stall she would pull the needle out. So I sat quietly in the corner of her stall while she got her fluids. Luckily, she started eating and I have since moved her to a better pasture and she is doing better. All in one day, my son's doctor, the horse's doctor and my doctor all called my office. It's crazy. But thankfully everyone so far is coming out okay.

    Anyway, any suggestions about Boston would be so appreciated! Thanks, Janet
    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
    Boston, has so much to do! Especially if your son is into history at all. My first recommendation would be the Museum of Science it is absolutly amazing! I also really enjoyed doing the parts of the freedom trail. I could spend forever up there and be quite content. The aquarium is ok. Also, check out Fanieul (sp) Hall area they have some great restaraunts. I don't know about hotels I've got friends that live in New Hampshire so that's where I stay. If you get a chance to sneak into NH about an hour away they also have America's Stone Henge. That was really cool.

    Hope this helps! Oh, yeah Dr. Maron rocks he is one of the best doctors I have ever met. Udelson and Estes are also really good they put in my AICD.

    Mary S.

    Comment


    • #3
      Hi Janet,
      Good luck in Boston. I can’t give you any sightseeing suggestions because it has been so long since I’ve been there all the buildings I know of have probably already fallen down and been replaced.

      I would like to suggest you tell your son about the trip and give him some idea of what they plan on doing (testing-wise.) I would also tell him about the possibility of the AICD, just like his dad and uncle have, and refer often to it as a safety net. If he asks, you can then explain why it is referred to that way. Give him the chance to associate it with growing up, becoming like dad and uncle ---, and that it is a safety device to protect him when he needs it. After all, when you are done worrying about it, it really is a good thing. Encourage your son to think about it that way.

      Hang in there Georgia – and things will turn out Peachy.
      Burt

      Comment


      • #4
        Janet,
        I am sorry I missed you yesterday - I will give you a call on Thursday.
        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
          Hi Janet. I know this is scary. I'm glad you're going to a good center and will be able to have really good information to proceed on. Your son is lucky in so many ways. He has a mother who would do anything for him, first of all. But he also has family history to look to, which many here don't, to help him (and you) determine what his treatment course might need to be. I'm hoping you get to do a few fun things while in Boston.

          Reenie
          Reenie

          ****************
          Husband has HCM.
          3 kids - ages 23, 21, & 19. All presently clear of HCM.

          Comment


          • #6
            janet good luck to you and your son from what i hear Baston has some great doctors and have some fun while there

            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


            • #7
              Janet,

              The Georgia-NEMC connection continues to grow!
              Marty is terrific, although he has a tendency to high five a lot. Your son may enjoy that.
              NEMC is in Boston’s Theatre district. So if you go on Priceline or Hotwire, that’s where you want to look. The hospital is a 5 minute walk to Boston Commons, 5 minutes to Filene’s Basment (which was very important to my bride) 10 minutes to Faneuil Hall, and 10 minutes to the Italian section (great restaurants).
              You also have easy access to the ‘T’ which is their subway system.
              Between my wife and myself, we have stayed at the Tremont, the Doubletree (both within 1 block of NEMC), and the Hyatt (3 blocks from the hospital). They’re all fine.
              There’s a Legal Seafood nearby, which is a must, and Boston’s Chinatown is right across from the hospital.
              All the best.
              Fx

              Comment


              • #8
                Janet,

                You have gotten the main scoop about the area surrounding NEMC. My family also stayed at the Double Tree Inn( 1-800-664-6835) You can actually see it across the street as you walk the long hall to the HCM clinic. The Tremont is now called The Courtyard by Marriot Boston. They stayed there also. The main streets that travel through the NEMC complex are Tremont and Washington .

                My family had a great time going to various restaurants when they came to see me during the week long stay.

                Dr. Maron had stopped the high 5's and my children and I are glad he has returned to this endearing gesture. He is so enthusiastic about all his patients and generally can not hide his genuine care and concern. You will be very pleased when you meet the entire team. Your son will get excellent attention.

                If you have any more questions regarding surrounding motels/hotels you can also try:

                http://www.hotels.com

                Look for Boston ( downtown).

                NEMC also has a listing of recommended facilities. Give Celeste Webster( HCM clinic) a call at 617-636-8066. She will send it out to you. If you go to the NEMC website you can familiarize yourself with the site map and it will be easier when you go.

                Let me know if there is anything else I can offer you to make it easier.

                Regards,

                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

                Comment


                • #9
                  Janet,

                  I've never been to NEMC, but many of the larger medical facilities have a Ronald McDonald House or similar housing arrangements for families with children under 18. For a short visit, you may want to use a nice hotel, but if you're going to be there for more than a few days, check with the hospital to see if there is such a facility. It's nice to have the playroom, computer room, laundry facilities, kitchen, etc. Also, there are other families, children for company, parents to visit with, etc.

                  Best wishes, Linda

                  Comment


                  • #10
                    hotels

                    the best way to get a hotel is thru priceline in the theatre district. go to
                    www.biddingfortravel.com to see what hotels are coming up and what
                    people are paying.

                    When felix had his myectomy last year I was scheduled to leave on
                    friday. I decided to stay until Sat morning and needed a new hotel
                    last minute. I phoned my friend who went on the internet and got
                    teh doubletree that night for 50$ from priceline. I then went across
                    the street to check in.

                    There is an aquarium downtown, but i dont know if he has "outgrown" that. Maybe the Red Sox will be in town and you can catch a game.

                    sandy
                    Fx

                    Comment


                    • #11
                      Janet,

                      I hope everything goes well with your son's visit. I will pray for your son and his doctors.

                      My brother who lives in LA, just left Boston, and he loved it there. I hope you have fun too, he said there is so much to do.

                      Hugs,
                      Eve
                      49 yrs. old
                      Diagnosed at 31.
                      Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
                      First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
                      Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
                      Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
                      My brother passed away suddenly at 34 yrs old from HCM.
                      2 teenage children, ages 17 and 15.

                      Comment


                      • #12
                        Janet do not forget to mention that your son is a patient at NEMC. There is a discount and it was substantial for my family. I am not sure of all the ones that offer it , but Double Tree did and also the Tremont. I am sure they all stay competetive.

                        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

                        Comment


                        • #13
                          Thanks

                          Thanks for all the information. We just got word our appointment was moved from April 8th to April 1st. I have reservations at the Tremont which is now Marriott. I had to complain a bit to get the rate the hospital gave me. It was quite a bit of savings. When I called the hotel direct the manager assured me he would honor the rate the hospital quoted.

                          James is a bit nervous about going out there. From all of the responses from you guys, I am confident we are going to an awesome place.

                          I will keep you guys updated. Thanks so much for all of your thoughts, concern and help!

                          Janet
                          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.

                          Comment


                          • #14
                            Janet,
                            The Team at NEMC is great. Everything said about Dr M Maron couldnt be any more true (high 5's ect..). The other Dr you will meet with is Dr. Udelson. VERY VERY nice guy. He is great my family and I cant say enough good things about him. Hope all goes well at you visit.

                            Bryan

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