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  • ???'s for you all :)

    [FONT="Franklin Gothic Medium"][/FONT Hi I just inroduced myself in the new pple part.. lol sound like quite the intelligent one with that sentence eh???LOL...

    Here's background...

    aunt(moms sister ) collapsed 15 years ago. The cause of death HCM. Now I never thought much about her heart disease being anything other than related to her poor health habits. She was very overweight, ate crud, didn't exercise, etc etc.

    In December 2006 my baby brother was found dead on his floor at the age of 34. cause of death??? HCM.... Chris my bro was 34, 5'8 138 lbs, ate well exercised lots and was a pediatric ICU nurse. So.... after hearing the final results of the autopsy just March 10th I am now just dealing with the family link here. I am 40, caucasian, 2 kids, no health issues cept got asthma a few years back and a horrible pneumonia 2 years ago. other than that I am healthy. Although I am extremely fatigued. Which of course I could chalk up to my hectic life. My husband is waiting for a liver and heart valve transplant at UCLA. Me? I am a full time masters student becoming a child life specialist, my son kyle is 10 and my daughter Olivia is 9 and was born with a little something xtra on her 21st chromosome. Thats my background. here's my ?'s

    Since I am just first learning all about HCM what would you suggest I do/say or schedule with my doctor. I've never had to have any heart tests done be4. What are the best and most important tests in diagnosing HCM???

    any pointers? Now I have yet to read too much on hcm but is it possible it is not familial and just a fluke??? DENIAL I live in a huge state of DENIAL...LOL Thanks for the welcome and take it easy...
    ((HUGS)) steff

  • #2
    Re: ???'s for you all

    You and both of your daughters need to have echocardiograms, or ultrasounds of your hearts. They will probably also do EKGs and maybe some other tests too depending on what they find.

    There is a 50% chance you carry the gene, and if you do, a 50% chance that your daughters have it also.

    Since you already seem to have a relationship at UCLA, you should probably go through your husband's doctor. My doctor that I would recommend to you is at Cedars. While he is great, I am also sure that the good docs at UCLA could certainly screen you all and if you need to see a specialist, you could change doctors at that time.

    The only doctor with some expertise at UCLA that I know is Kevin Shannon, who is a pediatric electrophysiologist but as I said, I am sure that any doctor in the cardiomyopathy clinic could do a proper screening.
    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


    • #3
      Re: ???'s for you all

      Sorry to hear of your loss.

      I agree also. I would have the enitre family checked. Better safe than sorry.

      Dewayne

      Comment


      • #4
        Re: ???'s for you all

        Hi Stephanie,

        I commented on your newcomers thread, but thought I'd comment here as well. I am also very sorry to hear about the loss of your brother.

        Yes, you and your children should be screened for HCM. An echocardiogram and ECG/EKG are the primary tests. If you tell the doctor that your brother died from HCM, he/she will know what they're dealing with.


        Take care,
        Gwen
        13-year-old (adopted) son diagnosed August 2006, septal myectomy March 29, 2007, Mayo Clinic-Rochester, MN, ICD implantation, May 20, 2009, Monroe Carell Jr. Children’s Hospital at Vanderbilt (Vanderbilt University Hospital), Nashville, TN
        One thing this diagnosis has done for me is to not take his life for granted, but to appreciate each day that I have with him, to enjoy his wonderful sense of humor and cherish his sweet smile.

        Comment


        • #5
          Re: ???'s for you all

          By the way, you said that you have been previously diagnosed with asthma...sometimes HCM is misdiagnosed as asthma because of the shortness of breath.
          13-year-old (adopted) son diagnosed August 2006, septal myectomy March 29, 2007, Mayo Clinic-Rochester, MN, ICD implantation, May 20, 2009, Monroe Carell Jr. Children’s Hospital at Vanderbilt (Vanderbilt University Hospital), Nashville, TN
          One thing this diagnosis has done for me is to not take his life for granted, but to appreciate each day that I have with him, to enjoy his wonderful sense of humor and cherish his sweet smile.

          Comment


          • #6
            Re: ???'s for you all

            Hi Stephanie,

            I'm so sorry to hear about your brother. That is tragic. As for you, go to a doctor who is a specialist the cardiomyopathy field. Have them do an echo stress test and EKG on you. If they show signs of HCM then get a genetic test on you and the kids. The sign that you have asthma could be HCM. Do you have any shortness of breathe? Start here and if you have not talk to Lisa in the office, please do so.
            Joe Del

            Diagnosed @ age 45 with HCM June 2004; ICD Implant: September 2004. Fifteen years prior was tested and told had an anxiety attack. Second ICD implanted May 5, 2009 with adding second lead.

            My biggest part is the depression and now on disability.

            Tested positive for HCM gene and all three children are negative.

            Husband and father of three children: Son 18 and two daughters 13 and 7.

            Comment


            • #7
              Re: ???'s for you all

              Hi Stephanie. The others have answered you already, but in short, you need an ekg and an echocardiogram. You should also have your kids tested. HCM is genetic and it's a dominant trait. If you have it, you have a 50/50 chance of passing it to your children. HCM is sometimes misdiagnosed as asthma, anxiety, being "out of shape", or fatigue. You have every right in the world to be tired but please take time to make sure you're all right too. Even if you test clear, get the kids tested. Sometimes HCM isn't as apparent as it is at other times. If you or the kids are diagnosed, make sure you (they) see an electrophysiologist. You might need an ICD to protect you from sudden death like your aunt and brother. Also, if the kids are clear right now, have them tested annually until early 20's then every 3-5 years thereafter.

              Reenie
              Reenie

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

              Comment


              • #8
                Re: ???'s for you all

                In HCM history plays a huge role. You may not show signs right now but you should be checked on a regular basis. My HCM was found from a cardiac MRI. A cardiac MRI is not a common test. It is very expensive but very accurate. Please tell your doctor about your history and he/she should go from there.

                I was just diagnosed in March 2007. Last year I ran a mini-marathon. I was very active. I am taking it a little easier right now until all my appointments and a decision is made for an ICD. My HCM is not bad but my history for sudden cardiac arrest is bad.

                Make sure you tell the doctor everything. My thoughts and prayers are with your family and your husband's health too. I just cannot imagine what you are going through right now. Please take some time for yourself and get checked. As a mother we always think of others first. Don't forget about you.
                Christie Dalton diag. 3/27/07: ICD on 4/25/07.
                Son diag. @ 6 and SCA at 8. ICD on 9/1/06.

                Comment


                • #9
                  Re: ???'s for you all

                  Hi Steff,

                  I too play the denial part. I was dx with HCM in 2000 at age 48. I had echos every two years after my brother passed. So it can come on at any age.

                  My brother died from it at age 41, in 1989. More likely than not, my father had it, he was 37 when he died in 1956. My fathers mother had an enlarged heart and lightheadness. She went to rest because she was dizzy, at age 76 and never got up. Genes sure play a role, don't you think?

                  Try and find a dr. knowledgeable in HCM. Get an echocardiogram and absolutely have your children checked. All of our children and grandchildren have been checked for it.

                  It took me four years to let the drs. put an icd/ pacemaker in me. Talk about denial........

                  You can be in denial all you want, just do what needs to be done....soon. Lot's of information on the disease right in this website. Good luck.....

                  Virginia

                  Comment


                  • #10
                    Re: ???'s for you all

                    Steff,

                    Please call the HCMA office at 973-983-7429. We are here from 9 a.m. to 5 p.m. Eastern time. We have some contacts at UCLA that we would be happy to share with you.

                    Look forward to hearing from you soon.

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

                    Comment


                    • #11
                      Re: ???'s for you all

                      Wow! Your hands are full with alot. First off let me say I commend you on becoming a Child Life Specialist. I admire that position so much. Child Life Specialist have played a huge role in my kids lives the last several years when they were dealing with serious medical issues. They helped my kids to cope where I did not know what to say. That position is just as important to me as the nurses and doctors.

                      My kids have been tested every year since my exhusband was diagnosed with HCM in 1986. My son is now 14 and my daughter is 12. My son was diagnosed two years ago at the age of 12. His heart progressed so rapidly that they are now testing my daughter every 6 months. I would get your kids and yourself tested as soon as possible. Then every year after that.

                      It is all so overwhelming but it is so assuring knowing that there are treatments, medications and surgeries that can allow you to live a full healthy life even if you are diagnosed.

                      We are here for you. This forum as been a huge source of strength for me during the last two years. Janet
                      My son James, Age 18, diagnosed in January, 05. AICD - 4/5/05 at Tufts NEMC. Myectomy -1/25/06 at NEMC. Currently having heart failure issues. James' father and uncle both have HCM and AICDs. James dad, Carlton, had Myectomy at Cleveland on 4/10/06. James Medtronic recalled lead fractured 5/26/11. Had Biventricular Cardiac Resynchronization AICD put in on 6/3/11 Emory Midtown.

                      Comment


                      • #12
                        Re: ???'s for you all

                        Steff,

                        Welcome.

                        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

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                        • #13
                          Re: ???'s for you all

                          thanks u all are great. Going to my doc on the 1st to get my referrals for my testing first. After that I will go from there.. (will go from there omg sound just like my dad lol ) In the meantime I am trying to change my insurancxe to the same one my husband has so I can go to UCLA too. My doc is ur average joe doc who sometimes is irritating but I figured all these years I am the hea;lthy one. I don't need a doc like my husband or my kids do it just seemed easier but never mind he is gonna hafta go lol. sorry doc...

                          Now when I get my echo done I am assuming hcm is easily detectable and anyone who knows how to read em can detect em especially if they know what they are looking for??? am i right here? cause it'll take a bit for ins to change and I figured I should just get tested now then once done change ins. My daughter had her last echo at 5 . Her ped has already scheduled her for another . Her ped at ucla is amazing. He doesn't mess around with her since most kids with downs syndrome usually have heart defects and she didn't he is always on the lookout since she is overweight and because of her genetic issues. Olivia my daughter did have heart type surgey when she was 8 months old on her rght subclavian which was wrapped around her esophagus and trachea like a noose. was cut and put back where it was supposed to be.called a vascular ring. a strange abnormality that happens very rarely.BTW guess what thats where I fell in love with the child life specialists and where my career started at least my educational career. so really my only ? is...
                          as long as they are looking for hcm can't most regular ole cardiologists detect it? thanks (((HUGS))) steff

                          Comment


                          • #14
                            Re: ???'s for you all

                            Hey Steff,

                            Unfortunately, no -- it is not always easy to detect HCM. Sometimes it is, and sometimes it is hard, even for the experts. Everyone's anatomy is different, and everyone's display of hypertrophy is different. That is why it is best to go to someone who is familiar with HCM. There are many times that we see on here that it has gone undiagnosed or misdiagnosed when it was there all along.

                            You should call the office and get the UCLA names and see if you can get referred there now. My doctor that I was going to refer you to is at Cedars, and there is another expert down in Orange County at the Hoag Hospital in Laguna, so if it would be easier to get to one of those places you should. Call the office and discuss it with them, or, PM me and I can set you on the right track.
                            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.

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