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Lisa Salberg Find out more about Lisa Salberg
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  • Welcome

    Our younger posters have asked for their own "room". So we have added this new space just for them.

    You are all welcome to post here - but lets try to let them talk with limited input from adults.

    OK guys - keep your room clean and have a great time!

    Please remember something....I was diagnosed when I was 12. I may sound VERY old to you because I am nearly 36 years old... however my teenage years seem like yesterday and I know all too well some of the issues you are each dealing with. From time to time I will share a story from my experience with HCM in school, dating, finding a job and other things that you too may be going through. I will never tell you what to do or tell you how to act...but I will share some thoughts and ideas with you.


    Be well,
    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: Welcome

    Lisa, Just "hanging out" and found this new spot. Great idea for the young with HCM. I'll get things started.
    I'm 17 and I have HCM but not in the way many of you may have "it". I do not have any symptoms yet but know that I am "genetically positive" for the disease. My mother, grandmother, aunt, uncle, sister, and several cousins have HCM. Stay positive, learn all you can about it, do all you can to let other people know about HCM, and get involved with this great group of people.
    I went to the annual meeting this year--got back just a few hours ago. It is a great way to stay informed. Maybe some of you can come next year. Look forward to seeing you there. Maybe we can go to a movie or to the pool as a group and "hang out " instead of staying for ALL of the meeting.

    Cynthia Patterson

    Comment


    • #3
      Re: Welcome

      Cynthia, I was really happy to meet you this weekend. You keep up that great attitude!

      Reenie
      Reenie

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

      Comment


      • #4
        Re: Welcome

        I enjoyed meeting you too, I hope you keep that kind of fire in you!!!
        Hello, I`m Craig, I have H.O.C.M. and I`m making the most of my life with my daughter and my wife!!!

        Comment


        • #5
          Re: Welcome

          Hey! I've only got a few days left of being young enough for this board. I'll be 24 on Saturday. Geeze I'm getting old. But anyhow I'm still in school and I'm still facing a lot of the battles that you youngins are going through.

          You can PM me anytime!

          Mary S.

          Comment


          • #6
            Re: Welcome

            Well, I feel pretty special. I am a 22 year old female. I am one of the young ones but after all I have been through I feel a million years old.

            I was diagnosed before my last semester in college. If anyone understands the social aspects of HOCM I do.

            This is the first summer I have begun to wear my tang tops which show my scars. For once I am not melting under the sun.
            I have managed to travel through this journey with my fiance who became my husband in the last year. We just spend a lot of time talking about HOCM. It is important we share our fears, keeps us on the same page. Well for you young ones, share at anytime. I know I am listening and feel free to instant message me.

            Ginnilea
            Heart nurse by day, Heart Patient by night

            Comment


            • #7
              Re: Welcome

              Hey--
              I'm 16 and was diagnosed this february (feb 6 of 04) and had an ICD last monday (6/7/04) and man its been such a fastm suprising, crazy mess. i also went to see dr. barry maron in march, so its been a CRAZY jam-packed 4 months.

              unlike cynthia, i have had symptoms of chest pains and shortness of breath to the point where i pushed and pushed my mom to bring me to doctors. talk about misdiagnosis!!! first it was asthma, then more severe asthma, then arthritis in my chest, then both, they they said "hey why dont you get this picture taken...just incase. during the first echo i had the tech asked,"no doctors or pediatricians ever saw this" i was like mmm whats going on!?

              the hardest part has been being pulled out of cheerleading. i was a hardcore cheerleader both just for games (yawn!) and VERY competitively. of course i was a base (i throw people), and of course i was finally succeeding in gymnastics, and of COURSE i was pulled out flat out in the middle of the competition season, and right before our biggest comp...that i was supposed to compete in an individial stunt group...
              ...that was a blower for me AND my team...
              ...not to mention one girl commenting to my best friend & the girl i threw (she was really upset too) "yeah i dont care when my stunt partner gets pulled out.." and "my docter tells me not to do anything (she has bad asthma) and i still do it..."
              but some people you just gotta brush off your shoulder (dont start singing the song!!!)
              ~janelle*
              \"The heart swells at the magnificance\"

              1 timothy 4:12: Do not let others look down on you because you are young, but set an example for believers in speech, in life, in love, in faith, and in purity.

              Comment


              • #8
                Re: Welcome

                Hey guys,
                Friends sometimes just do not understand this and it can really get to you. I know when I was in school and even as an adult my friends get frustrated with me when I can not keep up or I can not do what they are doing. It has caused more than one fight between us...which normally ends with them saying 'I forget that you have something wrong with you' and then I remind them that I never get the opportunity to forget and that I wish I could...they cry ... I laugh it off and we put it behind us and move on.

                Help teach your friends not to fear HCM, but to understand it.

                Hang in there guys!

                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


                • #9
                  Re: Welcome

                  yeah my friends have been really great about dealing with me lagging behind. i went to orlando and a few of my close friends made sure they stayed with me and would stop when i needed to. some people still dont get it though, but hey...then again i dont either...
                  ~janelle*
                  \"The heart swells at the magnificance\"

                  1 timothy 4:12: Do not let others look down on you because you are young, but set an example for believers in speech, in life, in love, in faith, and in purity.

                  Comment


                  • #10
                    Re: Welcome

                    hey guys I'm 16 and also have HCM. I was diagnosed when I was 13 and since then my septum has persistently grown, albeit not to a very dangerous level. however with the impending summer my doctor's thought it better to have an ICD and get rid of the possible sudden death feature.
                    Steven

                    Comment


                    • #11
                      Re: Welcome

                      Hi everyone,
                      So sorry to hear about everyone's problems with HCM. I had a checkup yesterday with Dr. Wang and I am still looking good--no problems, numbers look good and septum is .6.
                      True friends will stick by you no matter what. Try to educate the others about HCM and how dangerous it is for you to be super active. I'm currently letting everyone around me know about the need for AED's in public facilities and in schools. (Lisa, I have raised $12,410.00 for my project!!!)
                      Hang in there, learn all you can and be all you can. Remember, when God closes a door, somewhere He opens a window. Find your window and "hang out".

                      Cynthia

                      Comment


                      • #12
                        Re: Welcome

                        Hey Cynthia! I love that last quote. Can I use it sometime?

                        Reenie
                        Reenie

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

                        Comment


                        • #13
                          Re: Welcome

                          Hi, Feel free to use it anytime.

                          Cynthia

                          Comment


                          • #14
                            Re: Welcome

                            Cynthia,
                            I am so proud of you and all you have done! It is young ladies like you that will change the world!

                            Big hugs!!!!!!!!!
                            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


                            • #15
                              Re: Welcome

                              Hi,
                              I'm really too old to be in this part, but thought I would just say I think it is great to have the new board. I didn't realize it was here till about a week ago. I will tell Sarah, she is my daughter and is 13 and was diagnosed last year with HCM.
                              Thanks Lisa
                              Life is too short to worry about the trival things in life, So live life to the fullest.

                              Comment

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