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.

Keanu's echo and pc visit

Collapse

About the Author

Collapse

SheliRenee Find out more about SheliRenee
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Keanu's echo and pc visit

    Hi Everybody - I thought I stick a little post up here regarding Keanu's latest echo and cardiologist visits. He saw the electrophysiologist on November 17th and we were told the holter Keanu had to wear showed nothing new other than the V-tach that Keanu is already taking meds for. After being asked for any noticeable changes in Keanu, I mentioned that for about a month prior to that we have noticed that Keanu becomes short of breath (breathes heavily) as soon as he starts running. He has always been a very active (that's actually an understatement) little boy, but we have noticed that he now tends to slow down earlier than his "norm." His meds were not changed due to the fact that the echo was scheduled for the 3rd of December and he wanted that to be completed before changes were made. Anyway, the echo showed that Keanu's septum has gotten thicker. Makes sense now, right? The pc brought up having the septum surgically thinned (cut off part of the thickness). This is not a new concept, as we were told that it was a possibility when Keanu was originally diagnosed, among other things. However, we were not quite ready to hear that she (pc) is thinking about a septal myectomy so soon. Both of his cardiologists want to see him again in three months instead of the typical 6 months. Another sedated echo will be done on March 10th. I feel grateful that up until now, we haven't heard that his heart was getting worse, but I am a little upset about it now. He will be three in March and hate that he has this.

    I hope this finds everybody doing well. Have a wonderful day.

    SheliRenee
    Mom of Keanu
    4 years old (will be in March)
    Dx at 2 days old with Biventricular hypertrophy
    Dx at 6 weeks with HOCM
    Dx at 5 months with V-tach
    Dx at 3 with Noonan Syndrome

  • #2
    Re: Keanu's echo and pc visit

    SheliRenee, I'm thinking of you during this rough time. Let me know if there is anything I can do. PM me if you want to talk.

    Reenie
    Reenie

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

    Comment


    • #3
      Re: Keanu's echo and pc visit

      Hi SheliRenee,

      Just wanted to pop in and say that I know how you feel. My son had his myectomy at age 3. Its hard at any age, but seems even more so when they are so little. Tyler is now 9 1/2 years old and doing great!

      Take care,
      Michelle - mom to Krista and Tyler both HCM
      Krista surgeries: 3/97 myectomy, 2/99 mitral valve replacement
      Tyler surgery: 1/98 myectomy

      Comment


      • #4
        Re: Keanu's echo and pc visit

        Kids can do VERY well with myectomy (see above post). I know it is not what you "want" to hear - but you have options and treatments to use.
        Take a deep breath and know that we are here for you and that there are wonderful doctors able to help in these situations.
        REMEMBER: myectomy must be done in a center with a great deal of experience - Mayo or Cleveland for a child.

        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: Keanu's echo and pc visit

          So you wouldn't recomment the International Heart Institute at Loma Linda University Medical Center for a septal myectomy? How is it done when you go out of state?? Insurance doesn't cover things like that usually, right?

          SheliRenee
          Mom of Keanu
          4 years old (will be in March)
          Dx at 2 days old with Biventricular hypertrophy
          Dx at 6 weeks with HOCM
          Dx at 5 months with V-tach
          Dx at 3 with Noonan Syndrome

          Comment


          • #6
            Re: Keanu's echo and pc visit

            dear S,

            it depends on your insurance. it would probably be considered "out of network" so covered, just at a lower level. don't forget about the out of pocket cap, either. read your policy for the details.

            for example, i had a $70,000 year, including 4 trips to the Mayo and i only paid $2,000 of it.

            S

            Comment

            Today's Birthdays

            Collapse

            Working...
            X