If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

Running

Collapse

About the Author

Collapse

Beary Find out more about Beary
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Running

    Are there any people here who are genotype positive but phenotype negative and run? I have the gene but no echocardiograph evidence of HCM. I'm in my early 30s and like to run. I'm meeting with my Cardiologist soon but I don't see a need to stop running if my heart doesn't have damage yet. What are other people's experience?

  • #2
    My understanding is that some genotype positives never progress to a disease state....also running with appropriate warm up and cool down is not forbidden in HCM as far as I know. Just get regular cardiology check ups with EKG and echo cardiogram and notice any changes in excercise tolerance, sob, palpitations chest pain etc. Should they arise. Don't focus on " damage yet" since it may not occur. Screening for family history of sudden cardiac arrest is important ..... I hope you get screened by an HCM specialist......not all cardiologists are familiar with HCM and it's screening protocols
    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


    • #3
      I was a competitive runner for 39 years before the mutation expressed itself when I was in my middle 50's.

      Comment


      • #4
        Hi, everyone! Been reading this topic and would like to clarify. Basically, people with HCM are allowed to run since it has no effect on their condition?

        Comment


        • #5
          I recommend getting with a HCMA COE for an opinion on your specific condition.
          I am 58 years old with HCM but no known gene mutation. I have an ICD.
          My condition expressed itself after an automobile accident and a DVT and PE.

          I participate in aerobic activities on a regular basis like high level slalom waterskiing and ice hockey. I am also involved in exercise studies and where a Fitbit to track my steps.

          The point is not to brag but rather to offer encouragement to active people who are just learning about their condition. Live your life free from fear with the advice of a cardiologist who truly understands HCM. Having said that, I must say that there is still a lot to learn about the disease. Things are changing about the recommendations for exercise for people with HCM. It is not as restrictive as it used to be.

          Comment


          • #6
            Originally posted by mhochkins View Post
            Live your life free from fear with the advice of a cardiologist who truly understands HCM. Having said that, I must say that there is still a lot to learn about the disease. Things are changing about the recommendations for exercise for people with HCM. It is not as restrictive as it used to be.
            Thank you very much, mhochkins! That cleared a lot of things. Such an inspiring statement as well.

            Comment


            • #7
              It is sincerely my pleasure!
              The exercise study I am in is appropriately named "LIVE HCM" and that is exactly what I intend to do for the rest of my life! :>)

              Comment


              • #8
                I'm so glad to hear that and appreciate your optimism as well. I just retired in June and was planning on spending a great deal of my early retirement focusing my energy on training. I have competed in half marathons and triathlons (sprints and Olympics), but didn't feel like I could train properly due to working full time. I was thrilled to finally reach retirement and then......was diagnosed with HCM in July and was told no more competitive sports of any kind. I continue to run (with increasing difficulty it seems), swim and bike......however at a slower rate and always paying attention to my symptoms, e.g. palpitations with dizziness and what feels like my heart is pounding super hard for a couple of beats. I'm under the impression from my cardiologist that I can continue to exercise but find I do so with a fear factor.....hoping this will pass as I truly wrap my head around this diagnosis.....

                Comment


                • #9
                  Welcome RP....The most important thing you can do is get evaluated at a Center of Excellence for HCM. Even an excellent local cardiologist does not have a population of HCM patients that is large enough to experience and treat the individual nuances that each individual HCM cas presents....This disease is notoriously fickle in its presentation. The BEST chance you will have at participating in your retirement goals is evaluation and a treatment plan from an HCM specialist at a COE.
                  I am going to go out on a limb,as an HCM patient for 11 years and a retired ICU RN; If you are still experiencing palpitations, dizziness, excessive pounding ......you are probably not on the best treatment regimen. Some symptoms remain even with the best of treatments, medical and surgical, but give yourself the best shot.
                  I just noticed that you live in Ontario so probably coming to the US COEs is not possible? I believe Toronto General has a very good reputation with HCM. It sounds like you may have obstructive HCM.....has your cardiologist discussed your echo cardiogram results with you?
                  Learn all you can about your condition....this website offers a book for sale and phone advice through the HCMA.
                  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


                  • #10
                    Hi, Iím brand new to this forum, I just got diagnosed at age 50 with HCM. Iíve been a competitive age-group runner for a long time and was trying to qualify for Boston.

                    Once I got the diagnosis, I knew my marathon days were done, but thought Iíd be able to run 2 miles a few times a week or swim 500 yards. But the cardiologist told me I need to limit my exercise to brisk walks and light weights. He is an expert on athletes and HCM. I think my heart MRI was bad. My brother died from this 10 years ago, even though he was overweight and had drugs in his system, and my cousin who very fit was the same age as me died 6 years ago from this Ė so I think this is factoring into it.

                    Running is such a massive part of who I was, that itís hard to conceive going the rest of my life without it. It was really my best friend, my passion, my pastime, my drug, my dreams.

                    I donít know how this is going to proceed yet. Iím really just posting hoping that sharing this will help me feel better. I know Iím not alone. Iím praying for acceptance, and praying for friends of mine that having difficult situations in life. This is helping. Thank You!

                    Comment


                    • #11
                      Hello Mike....Welcome to the forum. You will find this forum is fairly quiet ever since HCMA started its Facebook group. So if you are inclined towards Facebook you may want to sign up there. I see you are from Hartford, CT.......Besutiful country I would imagine for your daily runs. Which HCM center are you being seen at? If you were just diagnosed, is it possible they are still evaluating whether you need an ICD before you resume anything more vigorous? The recommended parameters for exercise in HCM patients has changed over the last 10 years and continues changing rapidly as more studies are done.
                      I have heard widely varying recommendations based on both the patients condition and the doctors expertise and experience....I haven't heard of recreational running being totally forbidden...you may want to revisit this with your doctor and find out exactly what is behind this recommendation.....or get a second opinion.....even if it is a records review by another HCM specialist. You can also call the HCMA office and discuss your situation and see if they have suggestions. Having a back-up passion that ages well with your HCM might also be a good idea.
                      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


                      • #12
                        The COE at the University of Michigan does a lot of work with athletes and HCM. Its director, Dr. Sharlene Day, is a leader in investigating these issues. You might consider consulting them.

                        Gordon
                        Myectomy on Feb. 5, 2007.

                        Comment


                        • #13
                          I am so happy to hear that and value your idealism also, i simply resigned in june and was anticipating spending a lot of my initial retirement concentrating my vitality on preparing, i have contended down the middle long distance races and marathons dashes and olympics




























                          Life is what happens when youíre busy making other plans

                          Comment

                          Today's Birthdays

                          Collapse

                          Working...
                          X