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Just Diagnosed.

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marjen Find out more about marjen
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  • Just Diagnosed.

    I am 31 years old and just diagnosed this week with HCM. I must admit is a bit scary and I am glad I found this site so I can get feedback from people with the condition.
    I was told I had a murmur when I was 20, but that it was minor and of no concern. Last year I was having some off and on chest pains, my doctor ran an echo and it said slight thinkening of the heart wall, he didn't say it was anything to worry about at the time. Last week I was on vacation and fainted on a ride. It scared my wife and daughter to death so they made go back to the doctor. He was concerned and sent me to a cardiologist who said I have HCM.
    I'm still sort of in shock. I am a very active person, I enjoy running, usually 10 to 15 miles a week, and do some weight lifting. I also spend most weekends during major home improvement projects so to be told I have a condition that is going to limit my what I do is scary and frustrating.
    I don't do well when I think I may have some kind of illness so that few days I have been very tense and keep thinking I have symptoms. My chest hurts, etc. I went to the gym for the first time Friday just to try and walk or light jog abit, and almost had a panic attach, feeling like I was going to pass out. Its crazy until I passed out none of these thought passed my mind. I ran 20 miles the week before I went on vacation and now I can't even jog because I am afraid something is going to happen to me.
    Sorry I am rambling. Have others experienced the things I am feeling? Hopefully I can get things back to somewhat normal soon. Do others here run or bike or anything? If so have your doctors given you any sense of comfort? I really enjoy being active and I'm afraid this is going to really change my life.
    THanks for this website, so far its provided me with a lot of info, hopefully I have something to contribute here.

  • #2
    Re: Just Diagnosed.

    Hi and welcome to the HCMA. Everyone here can relate to everything you've said. I suggest first of all that you call Lisa at 973-983-7429 and she can point you toward a specialist who can give you lots of good information. Many doctors dont' know a lot about HCM and coordinating with specialists have helped many people.

    I understand the panic attacks. Remember, you've had HCM all this time and never knew it. Now that you know it, you need to learn about it, but don't let it run your life.

    You might want to talk to your doctor about being evaluated for an implanted cardiodefibrillator (ICD.) There are 5 risk factors to having one put in and fainting is one of them. Depending on other factors, it may not be enough reason by itself to put one in, but it's something to consider. The other factors are adverse reaction to stress test, where your blood pressure drops instead of increasing, septal measurement of 3+ cm, history of ventricular tachycardia, and family history of sudden cardiac death.

    As far as running and lifting weights, those things are usually prohibited in HCM patients. You can ask your doctor. Some people can continue to bike, though. It's something you need to coordinate with your doctor.

    I hope I've helped with some of your questions. Feel free to post anything you want. We're here to help with information and for support. We all understand.

    Reenie
    Reenie

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

    Comment


    • #3
      Re: Just Diagnosed.

      HI,

      It IS a bit scary isn't it? I wasn't diagnosed until i was 37 years old and it scared the crap out of me. I have spent the last twenty years of my life lifting weights, working outdoors for a living, and apparently 'tempting fate' given that now i know i have HCM.

      One of the best pieces of advice i have ever received was that... if i've lived this long without even knowing i have HCM, then chances are that i will live a whole lot longer knowing what i do now. Take good care of yourself and by all means please seek the medical attention you need. But at the same time don't get so freaked out that you start feeling like you are going to drop dead at any moment. That's what i did! (Freak out, not drop dead.)

      When i was young, i was told by the 'ol family doctor that i had a murmur but that is was nothing to be concerned about. That was twenty years ago and the guy seemed like he was a hundred years old even then. It'll be okay. You have the information you need... just use it wisely to make sure you live another 31 years

      Take care,

      Jim
      "Some days you're the dog... some days you're the hydrant."

      Comment


      • #4
        Re: Just Diagnosed.

        Hi Marjen,

        First off, please relax. As other posters have mentioned, chances are you've had all along, didn't know, and have come this far. For your information, if what the"experts" claim is true (1 out of every 500 persons in the U.S has HCM), so there are more people out there who survive this than not, otherwise they would be dropping like flies.

        In addition, take your time in deciphering all of this information that can be initially very overwhelming, believe me. You're going to hear from a myriad of internet experts who will be more than happy to make recommendations based on their experiences that may not even pertain to your situation. ICD's, SCD, cardiac caths, radionuclide studies, are all words that could be thrown at you, and yet may never pertain.

        TAKE YOUR TIME, and seek professional advise. Make sure you connect with a cardiologist who is concerned with you has a patient not another case for their data base. Best of luck, listen to your body, and be healthy.

        Sincerely,

        Bert

        Comment


        • #5
          Re: Just Diagnosed.

          That was very well put, Bert.
          "Some days you're the dog... some days you're the hydrant."

          Comment


          • #6
            Re: Just Diagnosed.

            How do you know if you connected with a cardiologist who cares about you as a patient opposed to a cardiologist who wants to make you another case for their data base

            Comment


            • #7
              Re: Just Diagnosed.

              It doesn't require too much perception on a person's part to be able to tell if they care about you as a patient.

              In my son's case, once all of the diagnostic tests had been exhausted, there was nothing else for the "experts", at a major teaching institution in Boston to pursue, even after we pushed them for risk stratification and an exercise plan. They showed no desire to do any follow-up because there were no symptoms to attend to. in addition, from an emotional point of view, they were pretty ill-equiped with dealing with an asymptomatic athletic teenager and the anxiety that is obviously associated with this diagnosis.

              Since then, we have found someone who has a less dogmatic approach towards allowing kids to attain a certain level of fitness. With all of the obesity that our kids suffer from today, I was glad that we had found someone who wasn't concerned with kids being able to spell myocardial infarction as much as having one by their 30th birthday. Best of all, this guy returns emails, phone calls and is always optimistic.

              That's all...

              Bert

              Comment


              • #8
                Re: Just Diagnosed.

                just had to comment here...
                I have the utmost respect for this Boston location. They covered all of the bases for me (had echo, stress test, MRI) and have always returned calls and have said on more than one occasion, to call them anytime with any questions or just to talk. I have always felt that I was their full focus at every office visit. My perception of them is one of high regard and respect .
                \"It is not length of life, but depth of life.\"

                Ralph Waldo Emerson

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                • #9
                  Re: Just Diagnosed.

                  Thanks for all the replys everyone. It is very overwelming at first. Today I just started on Beta Blockers. I am not a fan of any medications so taking something that controls my heart is scary to me. I am having a new echo done next week as well as a stress test. Hopefully this is something that has always been there and it isn't getting worse.
                  Its so strange to me that if I didn't go on vacation and go on a roller coaster that for whatever reason caused me to pass out, I would be going about my life like I always had with no knowledge of the situation. Hopefully once all tests are back I can find some type of excercise program that the doctors will allow me to do.
                  Again thanks you for the kind words.

                  Comment


                  • #10
                    Re: Just Diagnosed.

                    As far as taking meds for your heart go, the beta blockers are to soften the heart beat so that the muscle can relax more between beats. This allows the heart to fill more fully with blood. Just thought you might want to know the theory behind it, especially since you don't feel any arrhythmias.

                    Reenie
                    Reenie

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

                    Comment


                    • #11
                      Re: Just Diagnosed.

                      Question though, do the Beta blockers and all this precaution help the condition? Is the only chance of sudden death when you are working your body hard, or can it happen at any time? Thats what confusing me right now.

                      Comment


                      • #12
                        Re: Just Diagnosed.

                        Welcome.

                        One of the many reasons to see a specialist is to be evaluated for any risk of sudden death. There are known risk factors and guidelines, but everyone is a little bit different and you can't always make a cut and dried call on whether you need an ICD.

                        But to answer your question, if you are at risk for SD, then it can happen at any time. You are much, much MORE likely to go if you are playing basketball or running than if you were sitting down, but people have had their ICD fire in their sleep (but rarely).

                        Also, yes, beta-blockers can help!!! However, as with any drug, watch for side effects. If you get depressed, lethargic, or have more palpitations than before, then you should talk to your doctor about taking something else. And never quit suddenly or skip doses, it can make you worse.

                        I also need to point out that, no matter where you go you are likely to be a part of the medical research database. Even my local PCP makes me sign a form saying my records can be used for medical studies (without any personal identification attached).

                        The key is to find someone who you respect, trust, and can work with --who also knows HCM inside an out. The specialists are used to working with local doctors to coordinate your care so you don't have to fly somewhere every time you need to see the doctor.

                        Personally, I went to the Mayo and they were incredible. I miss them still. I will never have any major medical work done anywhere else if I can help it. However, I know someone who had a bad time there. This is very rare, but it can happen. Doctors are human too. They aren't going to be perfefct every time or be able to meet everyone's needs always. People have different expectations about how their doctor should behave and say and do.

                        So investigate specialists and find the one that works best for you (and the HCMA is here to help you with that). See the links page, check out the web sites, call them, ask about billing/insurance, ask about the process, ask anything.

                        take care,

                        s

                        Comment


                        • #13
                          Re: Just Diagnosed.

                          You sound like me over 30 years ago, I was diagnosed in my early 20s and was running 5 miles, 5 times a week. Natuarally I had to stop. I had panic attacks for the next year and finally decided enough was enough I couldn't live like that, best decision I ever made.
                          Over time and working with your HCM doctor, you'll learn how severe your case is and there is a wide gap between severe and not so severe. You'll also learn what you can or cannot do.
                          Eventually I got back to riding a bike and have for the past 15 years. I've done some mountain bike riding, but not now as I have a bad hip so I do mainly road work now. In the spring I participated in a 50 km ride, so you can see it doesn't necessarily have to be the end of the road for excercise.
                          For the vast majority of us Beta Blockers work fine at softehing your heart beat which allows it to relax more and therefore not work as hard.
                          Sudden death happens only to a very small % of HMCers
                          You will have to work with your doc to evaluate what you would be capable of and also if your a candidate for an ICD.
                          Also have your family members screened if they never have been, HCM is a genetic condition.
                          Like Bert said you've had this all your life and have just found out now, so try to relax and treat this as a challenge to overcome and not as an affliction that will do you in.
                          Every great thing that has ever happened since the beginning of time has started as a single thought in someones mind.
                          So if you are capable of thought then you are capable of great things
                          Good luck and stay well.
                          Glen

                          Comment


                          • #14
                            Re: Just Diagnosed.

                            Hi!

                            No illusions - finding you have HCM changes your life.
                            How it will change yours - it will be your decision - not only your doctros....
                            I know that first things look
                            and I know how hard it is but I also learned to see things differently and appreciate life.
                            I hope you can find support and understand that with the new knowledge and understanding about your diagnosis - you have tha power to deal!
                            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.

                            Comment


                            • #15
                              Re: Just Diagnosed.

                              The reason to take beta blockers do help the condition is that your heart overworks itself every day. It pumps harder than most hearts do. If you allow the medicine to soften the beat, the heart isn't overworked as much on a daily basis. Therefore, it won't "wear out" as fast as it would with no meds. Does that make sense?

                              Reenie
                              Reenie

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

                              Comment

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