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.

here at the HCMA - Sept. 2003

Collapse

About the Author

Collapse

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

  • here at the HCMA - Sept. 2003

    Hello everyone,
    I just wanted to give a little update as to what is going on here! 1st of all Kelly is doing a wonderful job of keeping the office neat, organized and running smoothly! 2nd she deserves an award for having to keep my head straignt! It has been busy, in ways it has not been before.
    We are working hard to improve the HCMA..FOR YOU!... this takes time, and sometimes that time must come from somewhere else... by this I mean my time here on the board has decreases in the passed few weeks due to my attention being elsewhere.
    Please make no mistake...I AM HERE for you all... I am working hard to get more serves to you by means of improving our Board of Directors with some new faces and new ideas...introductions coming soon!
    New fundraising ideas! New programs and many other projects. My hopes are that you will begin to see the results of this work in the next few weeks.
    At this time I have 24 private messages in my in box - if you are one of them...please know I will respond as soon as I can!

    On a personal note..send get well wishes to my Becca - she broke her arm on Sunday ...she tripped in the front yard and that was all it took! She is in a cast for 4 weeks!

    Best wishes to all from your very dedicated President and fellow HCM'er!

    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)

  • #2
    Re: here at the HCMA - Sept. 2003

    Becca, take good care of that arm, hope it heals real quick!. Do me a favor and sign my name to the cast, since I can't be there to sign it Now's the time to put the pressure on Mom and Dad for that kitten if they haven't already gotten it for you. Love ya, Babe, Linda

    Comment


    • #3
      Re: here at the HCMA - Sept. 2003

      Oh Becca, I am sorry for that broken arm of yours and I certainly hope that it heals real soon for you . I can empathize well. I did that in 1986 while in Newport R.I. ,climbing around on the rocks next to the ocean. My son was only 8 weeks old and I was playing with my then 5 &6 year old girls. What a day at the beach ! Or should I have said ocean. I am glad I was not swept away by a big old wave while I gathered my wits back . Actually I really don't think I ever got my wits back just my wit...Ha Ha . (Lisa you might have to translate this little slap stick humor for Becca if you will). So all in all SPEEDY RECOVERY to you. Look at the bright side , you'll be like a celebrity as people ask you how you did it yet they'll want to give you their autograph. Isn't that a silly reverse? Take care little one . 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


      • #4
        Re: here at the HCMA - Sept. 2003

        Becca's cast is well decorated with all her friends, family and teachers signing in with good wishes. I really must say she is doning very well. Setting the arm was hellish...no pain meds... just BAM it is done, the poor thing was nearly in shock... she was SO mad at me and hated the doctor. I spent the ride home telling her that the Doctor did it to help her and she should be happy he was there to help her arm heal well.

        This got me thinking about how we all deal with our doctors and the news/pain they deliver. When Becca was 2 she got her "shots" I told her they we needed them so she DID NOT get sick and we must be grateful to have them... After the shot she turned to the nurse and said "thank you"... the nurse was shocked to quote her "in my 30 yrs of nursing no child ever thanked me for a shot!".

        Now I am sitting here thinking about how we as adults handle news from our medical providers for ourselves and our children. I think that if we as parents spend time educating our children in what the medical community can do for them and why it is important...when they are adults they may take better care of themselves and not have fears about doctors...which I know many adults have.

        Just a thought...any what do you all think??

        I guess I am looking for ways to help our children be comfortable with doctors...

        Oh Becca has forgiven the doctor who set her arm...even though she still thinks he was mean... I will work on that next week at the follow up visit!


        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: here at the HCMA - Sept. 2003

          How was the follow up for Becca?
          wish her the best!

          After seeing so many specialists I think we can educate our children not to be afraid from docotrs - but they also have to do their part.
          One of the doctors we met draw a smile-face while putting the "GELY" in our sons chest for the echo.
          Other told a story while preparing my son for the EKG - about little fishes doing pictures for him.
          And the best all the team smiling and telling him how wonderfull he is.
          also the TV in the chek-room helps


          Thank you for ALL your help!
          Daniela.
          Wishes for healh, peace and love!

          Daniela E-H, Mother to Matan-Ben (13 years old) who had his AICD implantation (29/03/04) and Myectomy (14/12/08) and Noga (4 years old) not affected
          Haifa - Israel.

          Comment

          Today's Birthdays

          Collapse

          Working...
          X