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

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New to HCM ..........REALLY WORRIED!!

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Sabrina42064 Find out more about Sabrina42064
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  • New to HCM ..........REALLY WORRIED!!

    Hi, I'm new to this Forum, but I felt compeled to write as I have many questions about HCM. I have recently found out that my mother-n-law has HOCM, with a 70% blockage. She was told that her siblings and there children needed to have echos done. To make a long story short, My 2 daughters ages 10 and 7 had echos on Wed. I recieved a call that evening from the peds cardio Dr. asking me to bring the girls in on Mon to discuss his findings!! OK I AM FREAKING OUT AT THIS POINT!!! The following day the girls pediatrician called me and told me that the cardio called him said that the 10 year old has a murmur ( which we have never heard before) and that the 7 year old had elivated BP with a enlarged Left Ventricle!!!!! OK ..........NOW I AM REALLY GOING NUTTS!!!!!!! Can anyone talk to me before Mon. My husband had his echo on Thurs. we are waiting on results. All these HCM web sites really have me SCARED!!! What does all this mean!!!!
    New to HCM

  • #2
    Re: New to HCM ..........REALLY WORRIED!!

    Hi and Welcome.

    Yes, this is all very scary at first and there are several things you need to know.

    First, the HCMA is here for you. You can call the office and talk to Lisa about finding a pediatric HCM specialist --and anything else. We don't give referrals out over the board as they just don't really work well that way.

    Second, the Search function at the top of this page is a great way of looking up topics. This board has been around a long time so there is a lot of experience in those posts.

    Third, the vast majority of HCMers live a full life span and do very well with medications or perhaps a procedure later in life.

    Fourth, everyone is different and HCM is a very broad term. HCM can present differently even among family members, so your kids need to each be treated as total individuals on this.

    Fifth, there are a lot (and I mean a LOT) of doctors who don't know anything about HCM and there are a lot that think they do, not realizing how quickly knowledge about HCM has changed. You may, for example, be told --incorrectly-- that chest pains aren't a symptom, or that there is no treatment or they kids will die young or other such nonsense. That is why is it so important to see a specialist (and read this board) so you know what is what.

    Just hang in there and we'll walk you through this.

    Sarah

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    • #3
      Re: New to HCM ..........REALLY WORRIED!!

      First of all! Take a deep breath and relax. HCM is not a death sentence many of us live realatively normal lives with this condition. Most of the stats you see are because most of the time only the really sick people go to hospitals for treatment. Many people have HCM and don't even know it!

      You will definatly want to give Lisa a call at her office. I am afraid she probably won't be in this weekend since she will be in Orlando but she is great at getting back to people.

      Go to the search function on this web-site. You will be amazed at the wealth of information it has!

      Everyone on your husbands side of the family needs to get screened. If it is in fact HCM you will also want to get a specialist that deals with HCM. It makes a world of difference Lisa can also help with that.

      I am sure others will chime in soon!

      mary S.

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      • #4
        Re: New to HCM ..........REALLY WORRIED!!

        Sabrina, you're taking a very important first step. You're learning about HCM. Everyone here can understand your fear. We've all been there. There are people here who have been diagnosed at 50+ years old and others who were diagnosed within the first weeks of their lives. Please do give Lisa a call. We're all here for you.

        Reenie
        Reenie

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

        Comment


        • #5
          Re: New to HCM ..........REALLY WORRIED!!

          Try not to freak out--I know--easier said than done. My husband was diagnosed at age 30. We had a five year old by that time. We (reluctantly, on my part) had another son 6 years ago. I have them tested yearly (echocardiograms)--My 6 year old has some right bundle branch blockage--my oldest--nothing so far. It sucks!!!--The fear of what may be going on with your kids--I live it everyday (my husband passed away 6 months ago--not due to this condition--but to a blood clot to the lung following surgery) alone--but--we have to move on. I have not had any restrictions placed on my boys yet. Wait until you get the explanation of the murmur--then--keep pushing--keep checking. I am an advocate of the "squeaky wheel." Keep searching--that's what I do. Best of luck --and keep us posted,
          Roxann

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          • #6
            Re: New to HCM ..........REALLY WORRIED!!

            Dear Sabrina,

            It is good you found this site where you will find a lot of support and information.
            when my son's pediatrics told me son has a murmur I did not understand first what it means and wasted a lot of time till finding a good cardiologist who was able to say what was wrong.
            The doctor that sent you to test your family helped you and your family.
            Even if there is no cure - there are treatments and medications to help control the disease.
            I hope the awareness will give you power to face the future.
            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.

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            • #7
              Re: New to HCM ..........REALLY WORRIED!!

              First of all............THANKS TO ALL YOU THAT WROTE TO ME!!!! Gosh you dont know how nuch your words of support meant to me!! I am still in great shock.......way more than I even realized till today ( I just had a good crying spell ... LOL ! )

              I am not really familiar with how the forum works......I am assuming that PM means Private Message..... how do you do that when someone sends something to your in box?

              Also on my first posting I mentioned that my 7 year olds left ventical was enlarged........can anyone tell me exactly what that means? I just want to be somewhat prepared for the Dr. visit.

              We are seeing a Pediatric Cardiologist, is this who I need to see ?? Everyone here mentions a specialist, or one that specializes in HCM, do not all Pediatric Cardios treat HCM.....??? My choices of Pediatric Drs. in my area are limited......

              THANKS AGAIN TO EACH OF YOU !!!!!
              New to HCM

              Comment


              • #8
                Re: New to HCM ..........REALLY WORRIED!!

                Hi,

                Read the FAQ document (link to the left of the Search link, above) and it answers all your questions about how to use the board (all that red text are links).

                An enlarged left ventricle is pretty vague. Most HCMers have a thick septum and/or a left left ventricle wall. It generally reduces the heart's ability to pump blood as effectively as it should. Medication can reduce the strain on the heart when it tries to compensate for this by beating too hard. It cal also cause heart arrhythmias, like tachycardia (rapid heart rate) or forms of fibrillation (random heart beat). THere is medication for that, too.

                The tests they run are to figure out where and how thick the heart is and what kind of heart rhythms problsm are happening --if any.

                Request copies of every test they do (echo, ekg/ecg, blood work) so you can see what they actually say versus what the doctor says they say. There can be a big difference.

                A pediatric cardiologist may know nothing at all about HCM. You may have to travel to find an HCM pediatric specialist. I think there is one in Texas, but Lisa is the one who knows where they all are.

                take care,

                seb

                Comment


                • #9
                  Re: New to HCM ..........REALLY WORRIED!!

                  but you should absolutely see the pediatric cardiologist in town that you like to get a full workup started and see if they know anything or not. also, you will need to have someone local for emergencies who knows your case and who will work with the specialist if you see one.

                  s

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                  • #10
                    Re: New to HCM ..........REALLY WORRIED!!

                    To answer a PM, private message, you would click the "reply to post" button underneath the message when you read it. I'm glad you're feeling better. We're here and we all understand how scary this is.

                    Reenie
                    Reenie

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

                    Comment


                    • #11
                      Re: New to HCM ..........REALLY WORRIED!!

                      Hi Sabrina,

                      Welcome to the HCMA. I just sent you an email asking you to send me your mailing information so that I can send you a packet of information. Lisa is out of the office at an American Heart Conference but I will have her try and call you on Monday. She should be able to put your mind at ease and answer your questions.

                      Please feel free to contact our office with any questions you may have.

                      Good luck on Monday at the cardio's office.

                      Kelly
                      Life is 10% what happens to you and 90% what you do with what happens to you.

                      Comment


                      • #12
                        Re: New to HCM ..........REALLY WORRIED!!

                        Hi Everyone!
                        I am here at the AHA meeting in Orlando! I did have a chance to speak to our newest member earlier today.
                        I want to take a quick minute and give Kelly a BIG thanks for this one! It is Sunday and Kelly - on her day off!!! check the board - saw this post and contacted me in Florida. I agreed that it would be best if I had a chance to talk to our new friend - so I asked Kelly to privately send her my cell # so we could chat.
                        About two hours later while on the floor of the AHA - the phone rang and as they say the rest is history!
                        Thank you Kelly for seeing the need and reaching out on this one!!
                        LETS HERE IT FOR KELLY!

                        Best 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


                        • #13
                          Re: New to HCM ..........REALLY WORRIED!!

                          Here's to Kelly!



                          Reenie
                          Reenie

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

                          Comment

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