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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durango1220 Find out more about durango1220
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  • new to the site

    I am so glad to see a web site for this condition. My daughter was diagionos since brith with hcm. she has fallen in the small percent tile of it getting worse. When we first learn about this we were blind to everything we were taking the doctorsat their word with everything. little did we know how serious this was. we changed doctors and have educate ourselves about this. we take know chances with her now. We are tring to get our local hospital to educate their er staff about this (do to recent vists to the er with her complaining of chest pain)they dont realize the serosness of this problem. my daughter is only three years old.We are making sure all her teachers are cpr certife she just started preschool this year. they know of the problem with her heart. her blood pressure as been going up. and they just up her medication to try and bring this down. we are fighting with social security to try and get them to do something this is our thrid attemp. She is getting a wish from the make a wish foundation. We have found when we explain the roblem with her heart people then realize this is real. and it can mean death . as a parent we all think we are going to die before our childern but in some cases that might not be true. I problem we have there is no famoly history of it that we are able to trace which rare we have been told. But we all have to take each and every day as it comes and do the best we can with the knowledge we have.
    durango1220

  • #2
    Re: new to the site

    Durango.
    Welcome to the HCMA. Here you will find people whose experiences are many and varied. Some are parents like yourself, others are children who have lost parents. The one thing that binds us together is our support, prayers, concern, and well wishes for one another. Either we all have HCM or love someone who does.

    Please contact Lisa at the HCMA office. She will help to guide you to the right people who can take care of your daughter in the best possible fashion. Meanwhile know that you are welcome here in our HCM community.

    Peace,

    Leon
    God Squad co-moderator
    Nothing is as gentle as strength and nothing is as strong as gentleness

    Comment


    • #3
      Re: new to the site

      Hi Durango,
      Welcome to this site. There is much information you can gather from this site and from the people who post here frequently. I would also like to make a few other comments.

      HCM is a genetic disease – it is in our genes at birth, and fifty percent of all who are born of one or both parents with HCM will have it also. On occasion there is also found a case where that person is the first in the line to be found with the disease. With this, HCM is found to be present in only one in five hundred people, on average, and of these, many do not know they have it. It is therefore a tiny portion of a cardiologist’s practice, and since most cardiologists spend their study time keeping current on the problems they see and treat every day, there are only a precious few who are completely current with the treatment of HCM.

      If you are not sure you have the right doctor to treat your child I would suggest calling and talking to Lisa Salberg, who is a complete fund of knowledge and also has an extensive list of HCM competent cardiologists. Her number is at the bottom of every page, and she is usually in the office Tuesdays and Thursdays during normal business hours on the East Coast.

      If you decide to join the HCMA you will receive a book that’s chuck full of information on HCM with your membership. Lisa will also be happy to send a packet of information to your doctor and/or ER, or hospital. I suggest talking to her about this when you call.

      Again, let me welcome you to the site – you ARE welcome here.
      Burt

      Comment


      • #4
        Re: new to the site

        Hello,
        Welcome to the site.

        I am a mom of 2 children who were diagnosed with HCM at birth. I understand completely how you feel. My children are 13 and 10 now. We've been dealing with this disease for 13 years already. When my daughter was first diagnosed, there was no information, no internet and no support groups. I was alone and didn't understand anything about this disease. I was very fortunate to have found a doctor who knew about the disease and wasn't afraid to consult with specialists in Cleveland when he wasn't sure how to proceed with medical treatment.

        We, too, have no family history of this disease. But now we know and the children will have genetic counseling before they have their own children. They understand they can pass this on to their future children.

        They take propranolol daily. They are not allowed to do competitive sports and they live pretty normal lives.

        Hope this helps relieve some of your worry. As was said in previous posts, contact Lisa. I did and it helped.

        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


        • #5
          Re: new to the site

          Welcome to the site. I would suggest you call the office. Why do you think that your daughter is getting worse? What has happened? Do you know her septal measurement?
          I am in the office on Tuesdays and Thursdays 973-983-7429

          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


          • #6
            Re: new to the site

            thank you everyone. I have not have had a chance to call lisa yet . It has been one of those days. I also wanted to let everyone know to I called Michaelas doctor yesterday after visting the site and ask more question yet, I am getting a medicalert tag as well . I was glad to read on the nitro and it turn out that she is not to take it. which at our hospital that is the first thing they well givefor cardic arrest. the other thing they told us was that they want her doctor called before anything is done so he can advise them. do to the fact he is about 30 minutes away. thank you again
            durango1220

            Comment


            • #7
              Re: new to the site

              Durango,

              I hope you have had a chance to call Lisa , and that you are feeling a bit better with proper guidance and information.

              It is very tough to have a child with a chronic illness and not know what the future holds for them.

              Please keep us informed as to how things are going for you and your 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


              • #8
                Re: new to the site

                Hi Durango,

                Welcome to the site. I am sorry to hear about your daughter's diagnosis.

                I pray that you daughter gets all the best medical care she needs and wants. Please keep us updated.

                (((((Hugs))))))

                -- Eileen
                49 yrs. old
                Diagnosed at 31.
                Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
                First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
                Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
                Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
                My brother passed away suddenly at 34 yrs old from HCM.
                2 teenage children, ages 17 and 15.

                Comment


                • #9
                  Re: new to the site

                  I am also new to this site. My daughter (12) and my son (9) were diagnosed with HCM when they were 4 and 2 respectively. It appears now that my daughter's condition is deteriorating, and I will be taking them to Yale New Haven Children's Hospital next week.

                  Can anyone tell me where the best medical centers, specializing in HCM are?

                  Comment


                  • #10
                    Re: new to the site

                    Call me and we can discuss your options.
                    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


                    • #11
                      Re: new to the site

                      Howdy Moonbeam,
                      If you live in Connecticut you are within striking distance of two of the three top HCM specialty centers in the country. There is the Tufts - New England Medical Center (NEMC) in Boston and the Cleveland Clinic in, of all places, Cleveland, Ohio. The third is the Mayo Clinic in Rochester, Minnesota – in the event you have family there you would like to visit.

                      The best diagnostic tools are the combination of an EKG and an echocardiogram (Echo) but the technician should be both aware that he/she is dealing with an HCM patient, and know how to make the appropriate measurements. Both tests are entirely painless – if you don’t mind having the blunt end of a scanner placed on your body and possibly pushed on a little to get a good reading.

                      As for and get the detailed readings from the echo so that Lisa can interpret them for you. You can usually reach her at the office on Tuesdays and Fridays. The number is at the bottom of every page. Good luck.
                      Burt

                      Comment


                      • #12
                        Re: new to the site

                        Since my post last week, both of my children have been seen by the Chief of Pediatric Cardiology at Yale...and they've given some disturbing news. The hypertrophy hasn't worsened, but both now have biatrial dilation indicative (or so they told me) of restrictive cardiomyopathy. Has anyone heard of this type of Hypertrophic Cardiomyopathy progression in children? I scheduled an appointment at Tufts NEMC, but they won't be seen until January 7th. The doctors at Yale wouldn't give me a copy of the EKG for either of the kids. Also, they have both now been put on Atenalol. Where do I go from here?

                        Comment


                        • #13
                          Re: new to the site

                          You are entitled by law to copies of your children's medical records. You should request their records in writing from the treating physicians or hospital, depending on whether you went through their offices or the hospital to have the tests.

                          Your next step has already been set. You will take the copies of their records to NEMC and they will give you more information. They will also probably want to do their own testing. I wouldn't freak out yet. Wait until the experts have given you their recommendation. And even then, you can seek further opinions.

                          I wish you the best, and am sure you will find the answer that works for you and your family.
                          Daughter of Father with HCM
                          Diagnosed with HCM 1999.
                          Full term pregnancy - Son born 11/01
                          ICD implanted 2/03; generator replaced 2/2005 and 2/2012
                          Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

                          Comment


                          • #14
                            Re: new to the site

                            I cannot help with information here, but I can pray. Specifically, I will ask that you get much better answers from NEMC on January 7 and that meanwhile you will be able to put the fears aside and enjoy the holidays with your family.

                            Rhoda

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