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The person in my life that has HCM is ...

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Lisa Salberg Find out more about Lisa Salberg
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  • The person in my life that has HCM is ...

    As this is the Family area lets see who is here and that may help us get things moving along.
    195
    Myself
    33.85%
    66
    My husband
    19.49%
    38
    My wife
    0.51%
    1
    My Child/Children
    24.62%
    48
    My spouse and child - children
    3.08%
    6
    My parent, sibling or extended family member
    7.69%
    15
    My friend/boyfriend/girlfriend/coworker
    2.05%
    4
    Multiple family members
    9.23%
    18
    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
    Supportive Husband

    My wife has HCM. Read my story below.

    (Moved original post to separate thread: http://www.4hcm.org/phpBB2/viewtopic.php?p=1435#1435)
    Thanks, Tim
    Forum Administrator

    Comment


    • #3
      My husband is the one in our family who is affected by HCM. (Not that we aren't all affected, but you know what I mean.) We are very lucky that so far he has few symptoms, however his septal thickness is pretty large and I know that there is always the possibility that things will go downhill for him. I read this board frequently to see how others deal with HCM and all of the side effects that can come with the territory.

      Tim, I think you're a great guy for all the support you give Lynn. It's difficult, but you do a great job. Just take it day by day.

      Reenie
      Reenie

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

      Comment


      • #4
        My family History (answer to POLL)

        My mom died at the age of 56 with HCM. I have HCM along with my three year old son. I also had a stillborn 8 years ago. He also died of HCM. My brother has HCM. His 10-year old son died in November on the playground at school. His daughter age 15 also has HCM. My sister has HCM and (so far, we pray everyday) none of her three children have the disease. All of us have been implanted with defibulators with the exception of my 3-year old. We are awaiting a second opinion on whether he needs one or not.

        Comment


        • #5
          My 4 year old son was diagnosed today with HCM. I think so far I am in shock. They have him on a portable EKG monitor right now doing more tests to be turned in Mon. As of yet he is the only one in the family with this condition. His fathers grandfather died before we met with some kind of a heart condition and I am trying desperately to get in touch with that side of the family to find out what it was. His doctor is fabulous and is actually the one who recommended I come to this site to meet up with other people who are living with HCM. If anyone has any words of incouragement at all I could really use them right now. Of course I am sure we all could. I really like the flying pigs thing. I too hope someday soon pigs fly!!! Had I known about this disease I'd have hoped for it then too. Unfortunately I think it takes it hitting close to home for anyone to be aware of it. Be in touch soon.
          Good friends are good for your health.
          --Irwin Sarason

          Comment


          • #6
            Hi. I'm sorry to hear about your little guy. First of all, hugs to you. Next, slow down. You are among friends here. Please acquaint yourself with this site, beginning on the first pages about diagnosis, treatment, etc. I think you will find a lot of information there. Most people with HCM live long and full lives. You will probably restrict him from organized sports and activities that are very physical. (Yes, I do understand he's 4 and that's what 4 year olds are all about. I mean like soccer.) If you would like to talk to our HCMA president, feel free to call her. Her # is on the membership page. She's been under the weather, but will get back with you. It sounds like you probably have a good doctor if he/she suggested you check this site out. Please let us know as your questions arise. And learn all you can.

            Reenie
            Reenie

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

            Comment


            • #7
              Take a deep breath...count to 10 and tell yourself..this is not the end...it is a new begining.
              I know your feeling 100 different emotions...let yourself. You will be scared, angry, confused, sad, and happy too. We have all been there ourselves and will be there for you and your family as you move through your life with HCM...So I offer you the welcome I have offered many before you...Welcome to the club you never wanted to join

              You have a lot to learn...but always remember to allow yourself time to laugh along the way!

              I was diagnosed at age 12... that was over 20++ years ago...and I am still here, and plan to be for a long long time to come

              Proper evaluation of your sons case will help to detirmine his risk of sudden death - while we offer no 100% sure indicators- researchers have made great progress in helping to ID those at highest risk and for them the treatment is an ICD - Read through the site learn the basics ask as many questions as you wish..either here on the board or PM them to me for private assistance.

              You doing everything you can for your little boy... your being a great mom and your son is very lucky to have you!

              Best wishes,
              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
                I remember all too well, that feeling of shock and disbelief with finally learning the diagnosis after being put off for 2 months as being a nervous, over-reacting mother. You will get good info on this site and you will find a lot of support, concern, and caring. Our members will share with you and offer guidance and support. It's great to just know you are not alone. Lisa(our president) will return a call to you in a few days if you leave a message. I'm pleased to hear that your doctor referred you to our site. All this flying pig business started back about 1995, during one of my son's extensive hospitalizations. We had an afternoon pass and went to Barnes & Noble Book Store. We found a wonderful book, Pigs Might Fly, by Dick King-Smith. It's even better than Charlotte's Web. Reading this was a great distraction for both of us, and as simple and uncomplicated as the story was, it was still an inspiration for me, and I think him also. Now, I have a watch with pigs that fly around the face(compliments of Lisa), a house full of flying pigs, they are now invading the HCMA office. Read thru the message board. Kathy, age 19, posted her story on Jan 14. Her very positive attitude may be something helpful to you at this time. Don't try too hard to soak it all up at once. Talk to Lisa and start with a clear picture. We're here for you and your family. Linda[/b][/u]

                Comment


                • #9
                  Thanks so much all of you! WOW!! I was checking for emails from my son's father (in Korea and has no idea yet) and I had an email notifying me of replies. I can tell already that you guys are great. After 5 1/2 hours on an adult sized monitor his biggest complain is the stickers hurt. he is presently settled on the couch with his step sister watching Spy Kids
                  Me being angry has hit. I had what most people call the perfect pregnancy. Ate right , no caffeine blah, blah, blah. He was a healthy 9lbs. 4 oz. baby with no problems other then a functional mumur. And to my amazement genetics snuck up and bit us in the butt. I'll probably be up most of the night looking over the site. I am an optimist and believe strongly in medical advances so there is a silver lining. ALWAYS!! I really appreciate the responses so quickly. You guys are wonderful. I will let you know what the doc says after his results from the EKG. Otherwise if I have any questions or need to vent I'll be back before then. Thanks again for being REAL people. That I appreciate the most.
                  Good friends are good for your health.
                  --Irwin Sarason

                  Comment


                  • #10
                    Ok A question..I have gotten notice of 2 pm's and can't actually get them.. Any idea why?Thanks
                    Good friends are good for your health.
                    --Irwin Sarason

                    Comment


                    • #11
                      Hi. On the page where you click to go into the general room, the family room, the medicine room at the top there is some links in red. Mine says I have no new messages right now. Yours should sy you have 2 new messages. Click there and you should be able to access them. If not, let us know and I'm sure someone else can help you.

                      Reenie
                      Reenie

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

                      Comment


                      • #12
                        I may be able to help your husband

                        I live in Seou, Korea working at Yongsan Garrison. I learned about my son't HCM just last November so I still have a great deal to learn. If I can be of help to your husband, he can call or email me.

                        Lisa and all of the people here at HCMA have been a great help to me and Lee. God bless your son and your family.
                        Brody
                        ________________
                        \"Some men see things as they are and say why? I dream things that never were and say why not?\"

                        George Bernard Shaw

                        Comment


                        • #13
                          Re: The person in my life that has HCM is ...

                          i just found out on June 22 of this year that my daughter has HCM and I and i found out that on June 25 also of this year that i have it too. the rest of my family is getting tested in the next few weeks. So I have been searching the net on any info on HCM. My husband and I have been educated so quickly on the heart and what every thing means but it took me almost a week to just say Hypertrophic Cardiomyopathy right.
                          Julie - lilchickenbutt

                          Comment


                          • #14
                            Re: The person in my life that has HCM is ...

                            A lot of people can relate to what you are going thru. I have been going thru it since last Oct. Keep a Positive Mental Attitude and things will work out for you.

                            You couldn't have picked a better place to talk about the events that are going on in your life right now. And what a place to get information...


                            BE STRONG,

                            Tigger1
                            " Real Courage Is Being Scared To Death But Saddling-Up Anyway "

                            Comment


                            • #15
                              Re: The person in my life that has HCM is ...

                              Thank you Tigger!!!

                              I was reading through all the posts yesterday and just balling... and I really think i needed it. I hadn't cried sense Kimber's.... I don't have a name for it.... but sense she passed out and almost died. I really think i need that balling... I'm feeling much better and with time and education I'm sure things will get better.

                              and for me talking about it, makes me feel better....
                              thank you a lot!!
                              Julie - lilchickenbutt

                              Comment

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