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.

12 year old son, James, Scheduled for Myectomy 1/25/05-NEMC

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

  • 12 year old son, James, Scheduled for Myectomy 1/25/05-NEMC

    I posted in the family sight but wanted to post here since there is so much myectomy experience. James was diagnosed in January, AICD in April and now scheduled for myectomy in January at TUFT NEMC. Just wandered if anyone had any advice for me as his mom to help him with the surgery. He doesn't seem afraid, or atleast that's what he says. I know it has to be overwhelming for a kid to be dealing with this. He saw his sister go through so much from her Traumatic Brain Injury this last year. I am just wanting to do all I can to take care of him.

    Thanks for any comments. It amazes me how many people are having myectomies now. It's amazing how far medicine has come. Hope you all have a great Christmas!

    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
    Janet,

    I breezed through my myectomy at the age of 49. One would have to think that young people heal faster and do even better. It is also true that males have less pain then females.

    At 12 he should breeze through it with flying colors. Mom is another story.

    Enjoy the holidays,
    Stuart
    Cleveland Myectomy Club
    August 31, 2004

    Comment


    • #3
      Janet.

      I cant imagine what you are going through as a mom I just had a myectomy in July in Minnesota. I have 4 children it was harder on them than me I was ready for surgery. I am 40 and all went well for me I cant tell you how much better I feel now. Do have a merry Christmas we will have you in our prayers. God Bless Connie

      Comment


      • #4
        Hi Janet,
        I think he'll come though with flying colors...I am not even two weeks post op at Tufts-NEMC and I am feeling better. I still have pain and it is a little hard with the sob but that is only from the surgery. I have no more chect pains. Prior to surgery I sweat buckets just breathing, that has ended. I am glad that I had the surgery, I just feel bad for my son because I thought that I had destroyed his Christmas but he told me this morning in his own six year way that he was okay with it and the he had his gift "ME". It put a smile on my face but I still feel bad, luckily his birthday is at the end of February and I can make it up to his then and get the bike he has been asking for.
        As the time come you may have question just ask. I can tell you that I think my surgery was harder on my mother, that I until the I discovered that I am allergic to ALL of the pain meds except Motrin and Tylenol. This why I am in pain because all the "good" pain relievers I am allergic to.

        Everything will fall inplace shortly and smoothly becuase your son is still young.
        Nikki
        ------
        "I will live each day with the love and help of my family and friends."

        Diagnosed w/ HOCM Feb. '05, ICD April '05, Myectomy Dec. 13th, 2005 at NEMC
        Wire fractured, ICD and wire replced on 10/17/2008.
        Adopted in 1979, no medical history passed on other than born with a murmur and leaky valve.
        Married 9 years to the greatest husband that a woman could want.
        Mother to a wonderful 9 year old boy. So far he is negative for signs of HCM.

        Comment


        • #5
          I believe that James will do wonderfully well and life will get better and better for him. As his mom , keep that picture in your mind... a healthier able to live a more normal life with hopefully much less symptoms.

          I can tell you from a personal perspective that my family and friends can not believe the difference 2 years post myectomy has made in my overall life and how different I appear. This Christmas was by far the most prductive I have had in years. Yes there are still trouble spots , but not like before. There is hope and the troubles all seem manageable and fixable to certain extents. Some would assume it has been the drastic weight loss I have had from gastric by pass surgery but, I believe it is that and the combined decrease in many previously needed meds.

          So with James having surgery and being so young and not having the effects of years of a chronic heart disease, he stands to reap very excellent benefits. YOU, mom , keep those thoughts fixated in your mind as you worry naturally about him and help him go through this process of pre -surgery and recovery from myectomy and the beginning of his new and improved life.

          You will be in our minds and in our hearts; some repaired ,some waiting for help or preparing for surgery,but will all be with you and 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

          Comment


          • #6
            Hey-

            I had this surgery performed exactly 1 year ago on weds. I was 17 at the time. I also have an ICD that was put in when I was 14. This operation can be very difficult for someone who is 12. I know it was for me, and I was 17. My mom was very very good to me. She always was there for me at the lowest moments, making me feel better. Just be there for him and he will appriciate it more than you can ever understand. As far as the benefits of the operation- I feel great. I play basketball 3 times a day, I do basically whatever I want to with very few symptoms. The operation definetly is worth it in the long run. I wish you the best of luck and if you have any questions feel free to give me a message.

            Comment


            • #7
              Daniel,
              Your comments are very much appreciated - we 'grown ups' sometimes need to here from the prospective of the younger ones out there. I have said it before - and suspect I will say it again - You amaze me with your maturity. I am glad to hear you are feeling well!

              Janet,
              James will have some difficult days ahead but he will get past them and soon it is will all just be a memory and a story to share with the rest of us. It looks like I will miss you in Boston due to the rearranging of schedules. Call me if you need anything!

              Best wishes to all,
              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
                Daniel - I've been wondering about you - it's good to hear from you again. I'm so glad you can offer such encouragement to James and his family! Thanks! Linda

                Comment


                • #9
                  Thanks

                  I do appreciate so much Daniel giving his comments. I have not seen many posts from teens dealing with this disease. James has been feeling pretty bad lately but it won't be much longer and he should be on the road to a better life. I was on Cleveland's website about this surgery. They have done 691 surgeries since 1997 and did not have one death from the surgery itself. I was surprised to see that they did less myectomy surgeries in 2004 than they did in 2003. About 125 in 2003 and about 117 in 2004. But that is probably because of other specialty areas doing more. I know Dr. Rustegar told me he does about 2 a month at NEMC. I have been trying to find out how many myectomies have been done at Children's Healthcare of Atlanta in Egleston, but I can't find any figures. I did find they had done 132 total stress tests between Egleston and Scottish Rite (the two main children's hospital in Atlanta).

                  Anyway, I appreciate so much the support that this site gives. I don't know where I would be without it.

                  I did ask Dr. Maron if there was any problems with James mitral valve. He just said that the valve was longer than it should be but he did not think they would have to do anything fo it.

                  Anyway, looking forward to seeing James get better! Thanks again. Just curious about how many kids under age of 17 have had this surgery. Any body have any ideas? Thanks for your support! 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


                  • #10
                    Janet,

                    I think that what Daniel said about his mother being there for him is very important. Your family has come through (and continues to be in) a very difficult time with your daughter's injuries. This may be a time in which James can be the protected and pampered one. This could be a very special time for all three of you, for your daughter to help her find her own strength, for you to be able to shower love and attention on James and for him to overcome any guilt he might have that he did not get injured when his sister did.

                    I say this from a considerably different situation, but one that gives me reason to believe that this could be a good time for the three of you: When my daughter was little we disciplined her fairly strictly. No, we did not beat her or do anything cruel, but we constantly moved to control her behavior because she seemed very bad tempered and ill-behaved. Many people criticized us for either being too strict with her or too lenient with her, because everyone could see that she had a problem. She began to withdraw from us, no matter how hard we tried to show her that we loved her.

                    We then found that she had kidney damage from constant kidney infections from birth. Talk about parental guilt! We had disciplined her for not sitting still when she was in intense pain!

                    When she had surgery the next year at age 5, everything went wrong. The pain was so intense that morphine drips did not cover it at all; when they gave her further pain meds, she vomited endlessly; she could not eat or go to the play room as a result; the kidneys did not heal, so they could not remove the kidney catheters; and on and on and on. She was in the hospital three times as long as expected. We wondered why she had to suffer so much, but of course we became her defenders. We told the nurses they could not make her walk after her normal bedtime. We pushed for more pain control. etc. The result was a renewed bond between us that has never been broken, even by the pressures of teenage.

                    Before she had the surgery, we prayed and prayed for healing, but it did not come. Afterward we realized that there was deeper healing that could only occur if everything went wrong and we were there to help.

                    Maybe this will give you and other parents who face such pain when your children suffer some hope. I hope so. Good can come from bad in all situations.

                    Rhoda

                    Comment


                    • #11
                      Hi Janet,

                      As a Mom of a special needs child; both physically and mentally. I felt that I needed to give you some support. I also had a myectomy Nov. 2005.

                      Ashley is 21 years old now, but as a child she had 15 major surgeries and countless outpatient procedures. All of the major stuff was done out of state. We traveled to UCLA Medical Center in California and Shriner's Hospital in SLC Utah. I did alot of this as a single mother. I am not going to tell you this is going to be easy on you or James. I had a mom (her daughter had the same birth defect) tell me when Ashley was just an infant that "I would always know what was best for her". I have had many "disagreements" with doctors and insurance in our time, but Ashley has turned out to be more than anyone had ever expected. She lives on her own in an assisted living apartment a few miles from me and she has a part time job at an office where everyone loves her.

                      You are going to know what James and your family need when they need it; it comes with being a Mom. I pray that you will take the wise advice I was given so long ago. We Moms have to roll up our sleeves and do what comes natural.

                      As far as the surgery goes James will be great; kids bounce back so fast it is unbelievable. I am 8 weeks post surgery and I went camping and hiking with my family last weekend and I am 47 years old.

                      Best of luck to you and James. Keep us posted.

                      God's Unending Peace to You,
                      Catherine

                      Comment

                      Working...
                      X