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James visit to Boston.

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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.
Janet McClure
Barely Heart
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  • James visit to Boston.

    Well, we went to Boston last Thursday and Friday and got to see Dr. Maron and the Adult Cardiac Transplant Team at Tufts NEMC.

    They went ahead and gave us all of the literature for us to read and talked at length with us and James. Boston would not be able to do anything since we live in Atlanta but they can make recommendations to Atlanta. They wanted to do a VO2 Max test to see what it is now. Almost three years ago it was 17. Now they want to see what it is. It seems the doctors at Boston put alot of emphasis on the VO2. Where the doctors in Atlanta put a lot of emphasis on the BNP number.

    The doctors in Boston said that the BNP number does not mean anything to them at all. It is frustrating dealing with two different groups who have such different opinions. Of course I think alot of it has to deal with the actual HCM disease. Atlanta just does not have any other patients with HCM in heart failure.

    So they said a VO2 of 14 or under is usually the criteria for a heart transplant. More so than the ejection fraction. We were suppose to have it there but their equipment broke on Wednesday and they had to order a part and it was not repaired before we left.

    So now it is scheduled for Atlanta this Friday. Once we have that number then we will go from there. I know his EF has dropped significanty since 2007 when he had the last VO2 done so I don't know if that means the VO2 will as well. I guess we will know soon.

    His attitude has been better. Although, he seemed to be upset that the doctors did pretty much tell him he definitely won't get any better than he is now. Usually when the EF drops it does not go back up. That really upset him. But the transplant doctors did go over all the precautions and risks with transplants which can be overwhelming to a 16 year old.

    But the life transplants can offer is pretty amazing! So now we are waiting to see how the test comes out. He is excited about going marlin fishing after Thanksgiving.

    We'll keep you posted! 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
    Re: James visit to Boston.

    You guys are in my thoughts....

    Janet, my mom is living proof that life after transplants can definitely be amazing!

    -Kaye

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    • #3
      Re: James visit to Boston.

      Janet - I know this is overwhelming for all of you - my thoughts and prayers are with you on this next part of the journey.

      Hope the fishing trip is perfect!
      Linda

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      • #4
        Re: James visit to Boston.

        Janet,
        I know this is hard for everyone. If you need someone to lean on, we're here.

        Gordon
        Myectomy on Feb. 5, 2007.

        Comment


        • #5
          Re: James visit to Boston.

          Janet - Thinking of you and James and wishing you both the best.
          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.

          Comment


          • #6
            Re: James visit to Boston.

            Janet, many thoughts and prayers for you, James and your whole family as you wait for further direction for James.

            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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            • #7
              Re: James visit to Boston.

              Janet, I know what an emotional journey you are on. It is also a lot of information thrown at you about transplantation. Take your time, and a deep breath and start reading with an open mind. As Kaye says my life post transplant is unbelievable and I am not even a kid like James, Emily and Stacy. My BMP was high, and my V02 was 12 by the time I was transplanted. They also go on how you are feeling. My quality of life was severly compromised though I did try to hide that fact. Please feel free to email or PM me if you have any questions. I am also sure Emily's folks will be responding here soon.
              Midge

              Diagnosed in 1977, Myectomy in 1981 @ Mayo Rochester
              ICD&Pacemaker 1996
              Heart transplant March 19, 2004 @ Mayo Rochester
              Mom of Kaye.

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              • #8
                Re: James visit to Boston.

                Janet,

                Boy this disease is the pits.
                I am so sorry James is going through all of this, he is so young, it's not fair.

                Please try to keep hope and faith during this difficult time.

                Many prayers will be said for James.


                Lots of hugs to you all,
                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


                • #9
                  Re: James visit to Boston.

                  Janet, your letter brought back a flood of memories for me as well. My daughter was also 16 when we visited with our first trransplant team. She decided to decline going on the list because at that time they would not allow her to have dogs and dogs were her life, at least for the life she was living which wasn't good. She finally went on the list a few years later when she was having chest pains so bad, just sitting around the house. It wasn't a life. That few years changed the policy of owning dogs; things change so quickly. She had her transplant 10 years ago this past July 5th. It has not always been an easy ride, we've dealt with bad rejections and three bouts of Congestive heart failure, but she is alive and exactly one year ago my husband and I danced at her wedding; a day we never thought she would live long enough to celebrate, Keep your chin up and cherish every moment you share with your son!

                  Comment


                  • #10
                    Re: James visit to Boston.

                    Janet,
                    My heart is with you, and I will continue to keep you all in my prayers. James is one special guy, and he is blessed to have you as his mom. I'm glad you were able to visit with Dr. Maron and the Boston team. Please continue to let us know what you learn. We're here with you.

                    Canterbury, thanks for sharing some of your experience and giving others hope, too. Hope is such a huge gift.

                    Theresa
                    Philippians 4:4-9; Wife, & 39 yo Mom to 9 year old son and 6 year old son/daughter twins; Diagnosed with HoCM 1999; Cleveland Clinic Myectomy and ICD, January 2006.

                    Comment


                    • #11
                      Re: James visit to Boston.

                      Janet

                      You and James are in my thoughts and prayers.

                      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


                      • #12
                        Re: James visit to Boston.

                        Thanks for the update from your trip.

                        As you know, there are different rules for listing kids and adults. The threshold for listing below a VO2 max of 14 applies to adults. But with his near-adult size, it may apply fairly closely to James.

                        Knowing when the right time to list is very hard for you and your team. As Canterbury said, every year you wait, the better the procedures are for transplant. Emily's downward progression was so fast, we realized fairly quickly that we could not wait. When a patient is stable, or declining slowly, it is hard to know. Looking at the change in things like VO2 max may help see how the condition is progressing. Balancing the difficulties and risks of transplant with quality of life and current state of illness is a terrible issue to face.

                        You are obviously doing all the right things by seeking as much expert input as you can. Dealing with more than one center with different protocols seems very challenging.

                        Good luck with your testing this week.

                        Emily is almost 9 months post-transplant and is doing very well.
                        EmilysMom
                        Ventricle
                        Last edited by EmilysMom; 10-14-2009, 10:50 AM.

                        Comment


                        • #13
                          Re: James visit to Boston.

                          I got a call from Atlanta and they are wanting to do his VO2 test on a bicycle instead of treadmill because of his history. Just wandering what you guys thought about that. I wanted a good comparison to the one he had before which was on a treadmill.
                          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
                            Re: James visit to Boston.

                            I would call Boston and ask if there is any difference whether he is on a bike or treadmill, I would let Boston take care of this if they say treadmill. I mean that is my personal opinion. I think you need a break on this one. Hope everything works out for you and James.

                            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


                            • #15
                              Re: James visit to Boston.

                              Janet, I don't think there is really much difference in the two tests. The stress tests are based on the heartbeat being able to raise properly in a set amount of time. Both are registered in either test. How high the heart rate increases with exercise and how long it takes for that to happen as well as how long it takes to have the heartbeat return to normal is what the doctors are looking for. As Emily's mom wrote, it is not easy to know when to go on the transplant list. The unknown can be hard to deal with. And the waiting can also be unnerving. We had a call for a new heart in November of 98 only to lose our opportunity the have the heart because my daughter was finishing up an antibiotic (had two doses left) for bronchitis. We had to wait another 8 months before another heart became available. It was a 'forever and disappointing' wait. Our road post transplant, as I said earlier, has not always been a good one, but I have seen so much since the transplant, things I thought I would never share with my daughter, those are the things I will always remember. Even things there have been sometimes questionable. Since HCM had robbed my daughter of a childhood and teen-age years, as a post transplant patient, she is now living the 'free' life of a teen instead of always acting like the 'adult' she is. I really can' say I blame her for that though. She is very intelligent and I know someday she will begin to act the adult that she really is. In the meantime, I laugh a lot!!

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