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  • #16
    Re: Newly Diagnosed... start here!

    Hi Marissa, I wanted to comment on your post, I was diagnosed two years ago, I am 40 so I was 38, it took Dr. one whole year to figure out what was wrong with me, even with the obvious death of my sister 30 years before at the age of 11, no one made any connections. I have two genes that create HCM. I have 3 children two girls and a boy, and was told by my Cardio that I am lucky I didn't code having them. Both of my daughters have tested positive for two of the three genes that cause this. At this time they are both free from issues. I have gone over the thought that if I knew I had this disease would I have had children at all? I will tell you that I am responsible for them having this disease and it does, in many ways bother me that I gave this to them. Also the year I starting having symptoms I was so scare that I would die before they figured it out and I so did not want to leave my kids motherless, that alone was the hardest thing. It is not my fault that they have this disease as I did not know that I had it, but I probably would have chosen to adopt or not have children if I did know, as I would not want to give this to anyone on purpose.
    I thought that you might want to hear my thoughts as I most likely would have had much more issues dealing with my girls diagnoses if I knew that I had a genetic disease that I could pass on. This is not like ADD my mother lost her daughter, I lost my sister, and we did not know we carried this disease, I think my mother would have killed herself if she knew that she was the cause of her daughters death.
    I hope that this may help you in your questions. I do not take back having my children, but again I pray daily that they never have issues, and that I live a long life to see them grown.
    Thanks


    Originally posted by Missy2436 View Post
    Hello All,
    My name is Marissa, and I am now 24, and I was diagnosed with HCM in 8/08. That was the toughest thing that I have ever had to face, especially for how active I am. In fact, I'm still trying to wrap my head around all this, and that it actually happened. I do consider myself lucky to have caught it before it was too late. I was fortunate to not have any restrictions as far as athletics/working out goes. I was given the opportunity to speak with those that had HCM at the time I was diagnosed, but I was too stubborn to accept the help. Now it's 4 years later, and I feel myself falling apart, and figured out that I do need to speak with those that have HCM, and how living your life as normal as possible is going. I am also hearing impaired, so that is another life changing thing that I have to face as well. My concern right now is that does this condition get worse as you get older? Also, having kids is a BIG issue right now for me. I did find out that I do hold the gene for HCM, so I know there's a good chance for the kids to inherit the gene as well. Before I was diagnosed I wanted kids for sure, but now I'm not sure. I'm kind of scared! I know when I did a stress test at the hospital, my blood pressure dropped right away, so I can only assume that the delivery process would be like that, or just have a bad outcome. I definitely do have some bad days, and sounds like some of you do as well. Just frustrating for how young I am, to be tired all the time! Thanks for letting me vent!

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    • #17
      Re: Newly Diagnosed... start here!

      Hi Everyone - I was diagnosed with HOCM four months ago. My septal measurement is 2.8cm and I am very symptomatic. Ten years ago after multiple episodes of syncope I had a TEE done and was told structurally my heart was "within normal limits". Over the last several years I became more and more symptomatic and my doctor sent me to every specialist you can imagine but never back to the cardiologist because I already had that checked out. I have always had a heart murmur but during a visit for a respiratory infection my physician noticed my murmur seemed dramatically different. My doctor is also a personal friend and knows me well. The cardiologist she sent me to confirmed the HOCM diagnosis and was able to obtain the results of the TEE I had 10 years prior. She was surprised to learn my septal measurement at that time was 1.5cm - (not normal as had been told). I have been telling any medical professional that heard my murmur over the years not to worry all was fine. I am scheduled for surgery at Mayo with Dr. Schaff in a few weeks. A surprise pulmonary embolism a couple of months ago delayed the surgery initially. Between the PE and HOCM I have not been able to work much in the last few months and I am going a little stir crazy. I am very anxious to get a life back. I am 44 years old and have always lived a very active life. My symptoms are mainly severe fatigue, shortness of breath and angina. I wear a cardiac life vest due to syncope and family history of sudden death. I am not looking forward to the recovery and the vain woman in me is less than excited about the scar but can't wait to be active with my 17 year old son again!

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      • #18
        Re: Newly Diagnosed... start here!

        Welcome! There are many many helpful people on this site that have been "through it all" on the HOCM trail. Most importantly you have hooked yourself up with a center of excellence at Mayo which is what you need for coordinated care. I had a similar incident as you did in getting diagnosed. My PCP could hear my murmur loud and clear but my echo and stress test were "negative" so she just shrugged her shoulders!! I referred myself to a cardiologist (and fired my PCP) and got a clear diagnosis of HOCM at that time. Turns out on the day they did my echo I was having a "quiet HOCM day" and they didn't have me do a Valsalva maneuver to try to evoke a response. It sounds like even though you are having myectomy you will be getting an ICD also 2 for 1 ehh?.....Give yourself time, you will wear your scar as a badge of courage LOL...my best friend said..."Everytime I see your scar I want to sprinkle glitter on it and celebrate your survival"
        Ask as many questions as you need about the surgery or anything else..... there are great resources here and available for phone consult
        Three of our members are in Cleveland right now recovering from Myectomies done 5-6 days ago.
        Best of Luck to you!
        After years of symptoms:
        Officially Diagnosed HOCM 2006
        Myectomy 3/11/13 at non-COE
        Extended Myectomy 7/23/14
        At Mayo with Dr. Joseph Dearani

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        • #19
          Re: Newly Diagnosed... start here!

          Hi, i am 38, diagnosed a month ago with obstructive HCM. Had symptoms and heart murmur for years, investigated and told it is a functional murmur. My anxiety about this diagnosis has lessened to some extent but still worried about my myself, my brothers sisters and my 2.5 year old daughter. My LV thickness is around 15 mm but the gradient with valsalva was 100 mmhg. Started on metoprolol which helped me and in the last week verapamil was added " don't like the verapamil"
          This is the beginning of my journey with a chronic heart condition and i hope this will make me turn this into a magical transformation to a more fulfilled and happy life despite all the difficulties. My warmest feelings goes to all those with the disease, and their families. Thank you all for the support and especially the organizers of this site.


          Sent from my iPad using Tapatalk
          Using Tapatalk

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          • #20
            Re: Newly Diagnosed... start here!

            Dear Brilliant,
            Let me be the first to welcome you to the HCMA forum. There is a wealth of information and support here. I am 65 . I first started having symptoms in my late 20s and was told I had mitral valve prolapse..."Many young women have it, just take antibiotics with dental work"........Fast Forward to 2006 with LVOT pressures of 154 at rest and 175 with Valsalva!! I finally got diagnosed. Many people have had the same experience and through organizations like HCMA we can change that for future generations. If you haven't already, you might want to make an appointment to talk to Lisa Salberg, HCMA founder she can help you get oriented to the genetics aspect of HCM as well as the treatment options. AND/OR the book by Dr. Marin and Lisa covers HCM and all it's aspects.
            Most importantly, I want to comment on the beautiful attitude you have displayed in your very first post....There is a Universal Law that says,"Energy Follows thought" which translates into positive energy follows positive thought and negative energy follows negative thought....So going into your new diagnosis and seeing it as an adventure rather than a calamity can bring those 'magical transformative " moments you spoke of. I have learned a lot about life by having HCM that I never would have learned otherwise the key being an open heart and an open mind....Welcome
            After years of symptoms:
            Officially Diagnosed HOCM 2006
            Myectomy 3/11/13 at non-COE
            Extended Myectomy 7/23/14
            At Mayo with Dr. Joseph Dearani

            Comment


            • #21
              Re: Newly Diagnosed... start here!

              Thank you jill for the kind words. What HCM diagnosis gave me is different way of perspective: life is short and we better enjoy every minute of it, don't sweat the small stuff, there are more serious things in life that can happen to you " like HCM", take care of your body including better wight control, regular excersise ...etc. Spend more time with family, friends and dont isolate yourself " i suffered depression for years too " I am little overweight and my HCM prevented me from working out which made me just sit at home. I know these things seem well understood but now, they have a different meaning !


              Sent from my iPad using Tapatalk
              Using Tapatalk

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              • #22
                Re: Newly Diagnosed... start here!

                Hello, I was diagnosed with HCM recently at 29 yrs old. My insurance requires a referral from my PCP to see a cardiologist, but he didn't write it. Having a heart disease, I expected to see a specialist. Is this normal or should I see another doctor for the referral?

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                • #23
                  Re: Newly Diagnosed... start here!

                  Hi trayseaw,
                  I was also diagnosed last year at 29. It can be so life altering, we are all here for support. Have you called and pressed you PCP to write the referral? Sometimes they just need a push. If that doesn't work, I would defiantly try and find a physician who will work with and refer to a specialist. Have you heard of COEs centers of excellence? They specialize in HCM. There is a list on the HCMA website.
                  Take care and best wishes
                  Niki

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                  • #24
                    Re: Newly Diagnosed... start here!

                    Welcome - sorry you have this diagnosis, but glad you have found us.

                    Yes, you should see a cardiologist - call your doctor back for the referral. Also, if you have not called the HCMA office yet, please call and have a one-on-one discussion. Glad you are searching thru this site to learn about HCM. It's a big adjustment to learn of something like this. You will find much support and gain from other peoples experiences here. Hope your family is learning about this and supporting you.

                    Best wishes - Linda

                    Comment


                    • #25
                      Re: Newly Diagnosed... start here!

                      Here is a good Mayo Clinic video on Hypertrophic Cardiomyopathy! http://www.youtube.com/watch?v=DHQUITxGNgc


                      Sent from my iPad using Tapatalk
                      Joel

                      Born 1955 in USA, DX'd w/HCM 1996, in United Kingdom
                      2011, 2013, 2014 ablations for Afib and flutter in UK, INOVA Fairfax, VA, and Johns Hopkins
                      June 2014 DX HOCM at Johns Hopkins
                      October 2014 Myectomy and Cryomaze at Mayo Clinic

                      Comment


                      • #26
                        Re: Newly Diagnosed... start here!

                        This is an opportunity for you to begin the journey of self-advocacy that is required when you are diagnosed with HCM. Kudos you got a diagnosis from your PCP.... My PCP, in 2005, had no diagnosis and shrugged her shoulders, I referred myself to a cardiologist.
                        Call your PCP and tell her without any doubt in your mind or voice, that you need a referral to a cardiologist, preferably one that has experience with HCM.
                        . This is just the beginning, but it is the start that must be in place to establish your need for specialty care. Your goal will be being seen at a COE ( Center of Excellence ) eventually. If you are in an HMO the referral may take time, but start laying the groundwork now.
                        Knowing what you need and how important it is comes through in your voice to both insurance companies and health professionals....Thus the encouragement from all of us for you to become educated in HCM.
                        Welcome to the forum, it is a great group of people and remember there are no stupid questions....read up on HCM and ask away.
                        Last edited by JillC; 09-20-2014, 02:46 PM.
                        After years of symptoms:
                        Officially Diagnosed HOCM 2006
                        Myectomy 3/11/13 at non-COE
                        Extended Myectomy 7/23/14
                        At Mayo with Dr. Joseph Dearani

                        Comment


                        • #27
                          Re: Newly Diagnosed... start here!

                          Redteamer RE the video.... There is another video by Dr. Schaff about myectomy, I'm sure you probably have seen it already. But when I watched that video about 3-4 years ago, I started crying.... When he said some patients start feeling the effects of myectomy before they leave ICU....I balled like a baby....just the thought that there might be help out there for me lead me to research my condition further and get the help I needed.....The caveat being myectomy is not the answer for everyone, but truly is an option for those who are obstructed and not responsive to medication.
                          After years of symptoms:
                          Officially Diagnosed HOCM 2006
                          Myectomy 3/11/13 at non-COE
                          Extended Myectomy 7/23/14
                          At Mayo with Dr. Joseph Dearani

                          Comment


                          • #28
                            Re: Newly Diagnosed... start here!

                            Edit: double post
                            Last edited by Gomrad; 09-22-2014, 04:37 AM.
                            Cardiologist Testing: Early September, 2014
                            HCM COE Testing: Late September, 2014
                            HOCM diagnosed by Dr Marcos Hazday
                            AICD implanted: Oct 7th, 2014

                            Comment


                            • #29
                              Re: Newly Diagnosed... start here!

                              Hi Everyone,

                              Firstly, I hope that I am posting this "Newly Diagnosed" to the correct place. I am not here to obtain medical advice from a Dr. I'm simply here to meet and talk with others who have had similar experiences or can provide me some incite from their personal experiences.

                              I am a 46 yr old female who was diagnosed in October with a heart murmur. I have had some tests, most recently a Transesophageal Echo on Dec. 24/2014.

                              After the test, the cardiologist came to talk with me & told me that I had some hypertrophy at the base of my left ventricle + obstruction. My understanding from the investigation so far is that when my heart rate is under 120 bpm everything seems to be fine but it becomes a problem when my heart rate becomes elevated.

                              Today I saw my GP to discuss the results of the TEE. The summary states:

                              Basal thickening of the septum is seen, with mildly increased gradients across the lvot (peak/mean gradient 14/6 mmHg, described above). No evidence of SAM/chordal SAM. No increase in gradients with Valsalva.

                              The cardiologist has recommended a stress echocardiogram and I am waiting for an appointment.

                              I have been suffering with the following symptoms that are more noticeable & cause more problems depending on my activity.

                              Shortness of breath
                              Heaviness/tightness in my chest
                              Palpitations
                              Heart flip flops
                              Exhaustion
                              Headaches/Cough (May not be related)

                              I understand that I won't have a clear picture of what is happening for me until the tests are completed but I do have a few questions.

                              - Is this a form of HCM?
                              - How is a thickening of the septum repaired? Surgery? Managed with medication?
                              - If managed by medication, will the medication make the symptoms go away? Can the medication decrease the thickening?
                              - I am a law enforcement officer and am currently on desk duty due to my symptoms and feeling unwell. Will I be able to return to
                              my job as a first responding officer with the potential of being involved in physical
                              confrontations or physical exertion?

                              So many things going through my mind ... I appreciate everyone for taking the time to read/reply.

                              Thank you,
                              Carrie
                              PS ... My Dad is currently 67 yrs old and was diagnosed with hypertrophic cardiomyopathy when he was 17. He has been on medication ever since. Two yrs ago he was diagnosed with a apical aneursym.

                              Comment


                              • #30
                                Re: Newly Diagnosed... start here!

                                Welcome Carrie - I'll be moving your post to the "Hello. . . I'm" thread area.
                                The goal of the HCMA is to inform the public of HCM, and provide a resource for those seeking information - You've come to the right place! A couple of things to address. HCM is an incredible fickle disease - and from you looking around this site, you'll note that everyone's response to Medication and/or surgery is different. It is for that exact reason we stress seeking expert doctors - and in Canada that Toronto General. In the US we generally have to travel for expert advice as well.
                                If your going to do research - Please do it on our site or from one of the COE (centers of excellence) listed under our RESOURCES tab. You may wish to pick up the HCM book as well - again, excellent information. If your just google HCM you'll get some general info thats scary & tends to lean towards the negative aspects of HCM (OK, I can't think of a positive - other than this folks I've met on this site). SO To answer your questions:
                                Only a Doctor can definitively diagnose HCM. Generally an echo, family history and sometimes a Cath is all thats necessary to see. The thickening is removed surgically - there are two versions of the process - one is Open heart surgery and the other is chemically. Medication is generally tried and due to the fickle nature of HCM - its a trial and error sort of way. When all that is exhausted and your still symptomatic, then they suggest surgery. Now, surgery may eventually make you feel better, but you still have HCM. Its both a "plumbing" and "electrical" problem. If you are for sure DX with HCM, you'll likely not be able to continue as a first responder - your safety and the safety of others is at risk. Did your doctor inquire about your siblings or cousins? Any unconfirmed sudden deaths in the family? Anyone in family implanted with an ICD?
                                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 . . .

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