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Kevster Find out more about Kevster
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  • Hello All...

    Hi I'm Kevin and I am 26 and was diagnsed with HCM when I was...lets see...13? It is so wierd how I have to think about it, I am famous for blocking certain things out. It was in eigth grade when I found out because my heart felt like it was going to explode one night. That night my newly appointed cardiologist told me that I would no longer be able to do any stressfull activity. That was pretty rough for someone who was at wrestling practice that afternoon.

    Anyway, 13 years later I an trying to finally live my life the way I should. Although I did cut out the physical activitiy from the start, once high school and college came around I picked up some really bad habits, smoking and drinking. At the end of college I finally cut them both down but they are still around. 2 years ago I had an AICD device implanted. You would think that that would have scared me enough to stop smoking but it didn't. I did stop drinking though.

    After recently thinking long and hard about finally quiting the habit, I realized that aside from the obivouse addiction, there is an underlying need for physical activity. Although my doctor says no to pretty much everything but walking (as long as it is not up hill ) I need something. I feel that I eat very well and I just want to feel more fit and healthy.

    It is really hard to write this first message...there is so much I could talk about. But I think I am going to cut it off here for now. I really look forward to sharing my emotions, experiences, and troubles with people who understand.

    By the way...Excellent job with the site. It is rare when you find such good organization of information and ease of use.
    Kevster

  • #2
    Re: Hello All...

    Dear Kevin,

    I was diagnosed at 13, too. My brother was diagnosed at 8. He's now 29. He would play a little tennis (before his afib got bad) and does yoga. I do tai chi and walk.

    If you are really out of shape, start very small and walk and perhaps do yoga or tai or something like that. Talk to you doctor again and come up with a strategy to gradually increase your activity to approved levels.

    Perhaps if you saw a specialist in HCM you would have better luck finding out what more you can do.

    take care and keep us posted. What meds are you on? How do you feel?

    S

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    • #3
      Re: Hello All...

      I have been looking into yoga and think that is definitly something I would like to start. Is there a program or tape or a particular book that anyone could recomend? I just dont know where to start...serching the internet hasn't helped.

      I am taking 100mg tenormin twice a day and 240 mg Verapamil once daily. They definitly make me very tired and I think that some activity could help that.

      I dont feel that great...but I know that I am not getting a true feeling because of the cigarretes. it has been 1 week since I have completly cut them off and I have definitly noticed a difference! Hopefully I will start to get a better read on how I feel after a few more weeks.
      Kevster

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      • #4
        Re: Hello All...

        Dear Kevin,

        Why are you taking a beta-blocker AND a calcium-channel blocker? Just curious as most people take one or the other.

        I recommend Hatha Yoga and you should start with a class so someone can correct your postures --no one can tell you if you are doing it right from a tape. DO NOT try Kundalini, Bikram or Power yogas as they are too esoteric, too dehydrating, or too strenuous (in that order). Depending on where you live, there should be a yoga class in your area.

        I do "internal chi" from this guy (I am taking the actual classes near my home): http://www.tsaichi.com/shop/customer...1&cat=3&page=1 and it is the MOST amazing stuff ever.

        later,

        S

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        • #5
          Re: Hello All...

          Hey Kevin,

          Doug here. I too have been dealing with the same things you are. I am 38 now and also smoked and drank. Same reasons I would bet. I gave up smoking 8 months ago and it was the best decision I have ever made. Keep it up, you won't be disappointed. Not drinking is also a good idea as blood volume has a lot to do with how you will feel day to day and alcohol dries you up.

          I have been working on Yoga as well. I was VERY active before but have had to find new things that will help. I have found an excellent book on Yoga the Pilates way. It is as rigorous as you want to make it. You can fit it to your abilities. Look into it. You might like it.

          Hang in there. Lots of us folks are doing it with you.

          Doug
          NEMC's (Boston) First Myectomy 7-22-2003

          Comment


          • #6
            Re: Hello All...

            Congratulations, you beginning non-smokers. I quit some 25 years ago and it was the best thing that I ever did for myself. The idea that you need physical activity to help compensate for or overcome the smoking habit is what I finally came up with too after quitting but not being the least bit happy about it for several months. Definitely a dilemma when you have exercise limitations with HCM. Luckily, I did not at the time and I found bicycling very helpful.

            Since I have had to cut out activities that raise my heart rate, yoga is the most satisfying thing I have found---as many others have said. I hope you can find a class in your area. You can use tapes and books, but the benefit from doing it properly in a class is great.

            Whatever you decide to do, if it doesn't work, find something else--don't start smoking again. Even if our options are limited, we do have options.

            Best wishes.

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            • #7
              Re: Hello All...

              All of your support has been great...you should have seen me on friday night only 3 hours after I posted my message. I couldn't believe all the emotions that were going through me. I'm actually still not over it yet but I am getting there. It is amazing to finally feel like there are others out there!

              Thanks!
              Kevin
              Kevster

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              • #8
                Re: Hello All...

                Glad you've found us. You will be returning the support to many others . Linda

                Comment


                • #9
                  Re: Hello All...

                  Kevin, Oh ya your not alone, there's a whole bunch of us. Some with similar stories as yours, some not as bad and some much worse, keep reading, you'll get to know a lot real quick.
                  When I was first diagnosed 30 years ago I was told to stop all exercising, however over the years as more was learned I was able to do moderate exercising, so I have been cycling for several years now. Riding at a moderate pace I gradually extended my distance. On the week-ends I will ride 20 miles. I am going into a cycling event June 1st and will ride 50 kilometers (30 miles). When I ride my heart rate rarely gets over a 100 beats because of both the beta-blockers and the constant riding.
                  As you read more posting here, you will find that I am very fortunate and more the exception than the norm compared to a lot of HCMers and before you start any kind of exercising, clear it with your HCM Doc.
                  I would never had started this without my Docs blessing.
                  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

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                  • #10
                    Re: Hello All...

                    Welcome, Kev!

                    Reenie
                    Reenie

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

                    Comment


                    • #11
                      Re: Hello All...

                      Hi Kevin,

                      Way to go!!

                      Those cigarettes have such a hold...huh?!? I quit 3 years ago and I will never go back! I agree with Sue regarding the increase in activity - it's another focus or outlet. Walking worked well for me. I tried yoga, but I was too spastic...it wasn't working! Do what works for you!

                      This site will be wonderful for you Kevin as you need people to talk to. My husband was 16 when he was diagnosed, our children were 19 & 17. Finding information or a source of support was almost impossible years ago. I knew no one, other than family, with this disease. My husband went for his yearly check ups at the National Institute of Health & I enjoyed those visits cause I could talk to others with the disease. I made some friends in that waiting room!

                      The HCM community is fortunate to have this website! Take care Kevin.

                      Karen

                      Comment


                      • #12
                        Re: Hello All...

                        Kevin,
                        Thank you for your kind words about the site and the HCMA. I am so happy that you found us! Many people just have shared so many of the feelings you have now... yes we may have been diagnosed long ago and we may have been living our lives...yet we have never had the chance to meet others like ourselves, it is overwhelming when you meet someone who really understands!
                        I welcome you to our community and hope you find answers, friendship, support and a few laughs along the way!
                        Best wishes,
                        Lisa Salberg
                        Pres.
                        HCMA
                        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


                        • #13
                          Re: Hello All...

                          Kevin:
                          I can totally relate to you and what you feel. I hope one day I can write that I've quit smoking until then I give sooo much credit to those of you who have kicked the habit. Happy Easter :P
                          Tammy

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                          • #14
                            Re: Hello All...

                            Kevin,
                            I have just joined the site as well and I have to tell you, you've picked the right place. I'm still searching for answers myself and can offer little to no help, but I'm sure the people here will assist you greatly. Smoking and drinking, for me, make a huge difference in how I feel. Drinking more than smoking. I hope you find all the answers you need on this site, and more importantly, a way to exercise and life the lifestyle you want despite the disease. Good luck.

                            Michael
                            I\'m a 23 year old male who enjoyed an active lifestyle. I no longer have that luxury, but I am dedicated to finding a way to get it back. Feel free to contact me for any reason.

                            Comment


                            • #15
                              Re: Hello All...

                              Kevin,

                              Keep up the good work and DO NOT ever smoke another cigarette! I am 63, I stopped smoking when I was 25 and if I hadn't stopped I would not be writing this reply. Another thing to consider is the drinking. All my life I have had PVC's and last August I stopped having a glass of wine with dinner. Presto! the reduction in PVC's (premature ventricular contractions) was about 96%! Some people take alittle longer to get it.

                              Ralph

                              Comment

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