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Lisa Salberg Find out more about Lisa Salberg
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  • #31
    Re: Newly Diagnosed... start here!

    Hi Marc,

    Thank you for your reply.

    The only person diagnosed with HCM in my family is my Dad. He was diagnosed at 17yrs old & has been on meds ever since. Two years ago @ age of 65 he was diagnosed with an apical aneurysm. Although we live in Canada, he travelled to the Mayo Clinic to see a cardiologist. He will be re checked every year as he has no symptoms.

    No sudden unconfirmed deaths in the family and no ICD's.

    I don't yet understand my diagnosis enough to understand how it could impact my career. If the disease is able to managed by medication does a person have to be cautious regarding putting extra load/pressure etc on their heart? I will need to read about potential risks ...

    Still so much to learn and a lot to try to understand.

    Thanks for taking the time to reply.

    Comment


    • #32
      Re: Newly Diagnosed... start here!

      Hi My 14 year old son has just been diagnosed with HCM and is finding it hard to talk to us about it. Is there any forums just for kids to talk about what they're going through?

      Comment


      • #33
        Re: Newly Diagnosed... start here!

        MommaB - On this site is "the Hang-Out", Young adults post their questions and concerns and their peers share their stories. Others here do respond, but usually to correct facts or answer technical questions.
        Put yourself in his shoes - Getting a DX of HCM is something kids just aren't prepared for (and parents too!). Information on HCM often found online is can be scary. I'd suggest he only look at information on HCM from COE's (centers of excellence) located on this site: https://www.4hcm.org/wp/hcma-resources/hcm-centers/ Please know that kids today are lucky in that there is much more knowledge on HCM available and research is always finding new things. With proper care and treatment, he will live just as long as his friends. Yeah, he may have to drop some sports if he's involved, but he can still participate in other ways.
        I trust your doctor had you and his father checked as well as his siblings. In the US we have centers located in various areas, but in Canada, only Toronto General has an HCM Clinic. Can't stress enough that he sees an EXPERT in HCM. If you do your research, you'll see its a fickle disease and most cardiologists aren't very knowledgable about it.
        Marc
        Diagnosed @ 48
        Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
        Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
        AICD - Valentines Day '08, Spark Plug replaced 11/14
        After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
        Quietly going insane . . .

        Comment


        • #34
          Re: Newly Diagnosed... start here!

          Originally posted by mbcube View Post
          MommaB - On this site is "the Hang-Out", Young adults post their questions and concerns and their peers share their stories. Others here do respond, but usually to correct facts or answer technical questions.
          Put yourself in his shoes - Getting a DX of HCM is something kids just aren't prepared for (and parents too!). Information on HCM often found online is can be scary. I'd suggest he only look at information on HCM from COE's (centers of excellence) located on this site: https://www.4hcm.org/wp/hcma-resources/hcm-centers/ Please know that kids today are lucky in that there is much more knowledge on HCM available and research is always finding new things. With proper care and treatment, he will live just as long as his friends. Yeah, he may have to drop some sports if he's involved, but he can still participate in other ways.
          I trust your doctor had you and his father checked as well as his siblings. In the US we have centers located in various areas, but in Canada, only Toronto General has an HCM Clinic. Can't stress enough that he sees an EXPERT in HCM. If you do your research, you'll see its a fickle disease and most cardiologists aren't very knowledgable about it.


          Thank you very much! I'll be looking into the Toronto General we have only been to Vancouver Children's Hospital and seen the Pediatric Cardiologist there. All this is a bit overwhelming and I guess we just need to make sure we are getting all the info needed!
          I'm very glad I stumbled on to this site! Thank you again!

          Comment


          • #35
            Re: Newly Diagnosed... start here!

            Hi Dr.Woo at tgh is great.
            She saw both our children after positive gene tests.
            She was much more proactive about hcm and it's effects.
            A letter from her changes local cardiology


            Sent from my SGH-I337M

            Comment


            • #36
              Re: Newly Diagnosed... start here!

              MommaB: Here is a book put put by the HCMA. Written by the founder and with medical input from one of the world's foremost experts in HCM.
              Its a valuable resource to have and share with your family. https://www.4hcm.org/wp/hcma-store/
              Marc
              Diagnosed @ 48
              Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
              Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
              AICD - Valentines Day '08, Spark Plug replaced 11/14
              After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
              Quietly going insane . . .

              Comment


              • #37
                Re: Newly Diagnosed... start here!

                new to HCMA have a apical myectomy scheduled by the cleveland clinic


                Sent from my iPad using Tapatalk

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                • #38
                  Re: Newly Diagnosed... start here!

                  was wanting to talk about being diagnosed with HCM and if anyone has had a apical myectomy. My understanding not many have been performed.


                  Sent from my iPad using Tapatalk

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                  • #39
                    Re: Newly Diagnosed... start here!

                    Hi mafightmaster:

                    Welcome to our group. From what I have read, apical myectomy is fairly a new procedure, but it is being done at Rochester's Mayo. If you search Mayo's website, there is a video discussing the procedure. Good luck to you.

                    Comment


                    • #40
                      Re: Newly Diagnosed... start here!

                      Mafightmaster:
                      Welcome - Please introduce yourself in the "hello, my name is. . ." thread.
                      Apical HCM is a more unusual form, and we do have many here. It used to be that there was no surgical solution, then Mayo pioneered the procedure. I've not heard of anyone having it done at CCF, only at Mayo. CCF is a great institution and many of our "tribe" go there. Perhaps they have stepped up the game?
                      We always tell folks to not rush into surgery - mainly so they have time to understand the disease, know that surgery is not a fix, and they have a better understanding of options, etc. CCF is a COE (Center of Excellece). The HCMA has designated these centers as being experts in the care of HCM patients, and we stress they be seen by experts - as HCM is a really fickle disease.
                      That said, I'd suggest a couple of things - Are you being seen at CCF - WITHIN the HCM clinic there?? Have a chat with your surgeon and get some info - #of Apical surgeries, training, etc. We find the higher the number the better your outcome. If you still feel confident (and believe me, facing open heart surgery, is enough to worry about.) go for it, but do trust your gut instincts and let that guide you. For what its worth, recovery on Apical is really no different from the regular HCM, and there are plenty of members here who have posted their experiences. Keep us informed
                      Marc
                      Diagnosed @ 48
                      Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
                      Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
                      AICD - Valentines Day '08, Spark Plug replaced 11/14
                      After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
                      Quietly going insane . . .

                      Comment


                      • #41
                        Re: Newly Diagnosed... start here!

                        Hello I'm mafightmaster. Have been diganosed back in 2013 with HCM, CHF, Afib. Have had 2 ablations to the rt side, 1 ablation lt side, pacemaker inplant 12/2013. Now scheduled for apical myectomy. Doesn't seem anyone close to me taking this seriously, I need to talk about it, surgery has got me pretty worried.

                        Comment


                        • #42
                          Re: Newly Diagnosed... start here!

                          The "nobody taking this seriously" syndrome is pretty common. Most people with HCM don't "look sick" most of the time - so a lot of people seem to have trouble believing that we actually are.

                          I'd suggest that you call the HCMA office at (973) 983-7429, and make an appointment to talk with Lisa Salberg. This is one of the key things she (and the HCMA) does: provides help to people trying to understand their options (and their doctors), as well as issues like this one. You won't regret making the call!

                          Gordon
                          Myectomy on Feb. 5, 2007.

                          Comment


                          • #43
                            Re: Newly Diagnosed... start here!

                            Thanks Gordon, I will do just that. Maybe I'm just being paranoid.


                            Sent from my iPad using Tapatalk

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                            • #44
                              Re: Newly Diagnosed... start here!

                              Hi mafightmaster: Sounds like you already have been through a lot and having to face open heart surgery is about as scary as it gets. I had similar reactions from friends when I told them about my heart problem. I even felt guilty telling them and canceling get togethers and I believed they didn't take what I have seriously. I do believe since I looked ok, wasn't gasping for air, they thought I was over-reacting. As time went on, they came to understand the seriousness of my condition. I think people now a days don't know how to react. I think we have become desensitized because of the media and the news. Put all that aside and believe in yourself. You have nothing to prove. Take care of yourself and know we all here understand and we are here for each other.

                              I hope your surgery is being done by a specialist. I know Dr. Shaff at the Mayo performs apical myectomies, so I hope that is where you will be going. Please keep in touch and share your concerns. And as suggested by gfox42, give Lisa a call to discuss your options.


                              Sent from my iPad using Tapatalk

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                              • #45
                                Re: Newly Diagnosed... start here!

                                mafightmaster: Yes, OHS is scary, but if its done by an expert (like at an COE), its really no different than any of the other procedures (risk, pain, etc.). And it sounds like you've been through a few of those! Yes, recovery is harder and longer, but within a couple of three weeks you'll feel almost back to normal (whatever that is). As to the "others," sometimes they are just as scared as you and perhaps trying to put on a strong face - for you! When discussing this upcoming major event, don't focus on your fears, ask them about theirs. What worries them? in other words - talk it out. I bet they begin to see they can actually talk to you about the surgery without upsetting you.
                                As with any OHS, I feel the more you know about what to expect, the less you worry. This site has TONS of first hand stories and personal reports to help you understand what to expect.
                                Marc
                                Diagnosed @ 48
                                Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
                                Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
                                AICD - Valentines Day '08, Spark Plug replaced 11/14
                                After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
                                Quietly going insane . . .

                                Comment

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