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Let's have a "Running" discussion :)

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Darren1 My real name is Darren, I have HCM and am a VERY active person that loves to exercise. Find out more about Darren1
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  • #61
    Re: Let's have a "Running" discussion

    Peace, everyone!! What I meant when I said I had a "mild" form of HCM was with regard to symptoms only. I am able to run, bike, etc. and not every HCM'r can do that. However, if you look at my family history I might be considered to have a very "severe" form of HCM - having lost my mother and aunt to SCD. That is why I have an ICD and wear an HRM (and RoadID) when I exercise.

    We are all so fortunate to be living in a time when there is so much knowledge about this disease, and for most of us (I hope), access to COEs. There is a lot we do know about HCM as compared to just 1 or 2 decades ago.

    There is also a lot we don't know about HCM. Why have I never had an arrhythmia detected, but my twin brother is not infrequently "paced" by his device? Does having a specific genetic mutation point to having the "electrical" problems while a different mutation results in having a low ejection fraction? Was my septal thickness simply "missed" in the first 5 echos, or was I misdiagnosed, or did my septal thickness increase later in life than is "usual" for HCM? We don't know.

    Such questions lead us back to more things we all do agree on - be optimistic, and also be watchful. Learn all you can, seek out excellent doctors, and follow their advice.

    I'm going out for a run -- see ya!
    Susan
    Diagnosed at age 53 in April 2010 (after having been
    "cleared" several times)
    Into running & cycling - cleared to continue at mild to
    moderate level
    Extensive family history
    Lost my mom, aunt and nephew to SCD
    St. Judes "Fortify VR" ICD implanted 8/30/2010 "Ces't Watt"

    Comment


    • #62
      Re: Let's have a "Running" discussion

      Susan,
      You are absolutely correct. I think that is the point that I attempted to make. Mild HCM does not exist (just like being "a little bit pregnant"). HOWEVER, mild symptoms do exist. Most people have mild or no symptoms. Some don't know that they have HCM until they become symptomatic. And yes, running is certainly not out of the question for some. Each of us should be given some guidance from their HCM specialist as to what limitations they have based on their individual situation (risk factors, obstruction, etc).

      Haven't heard from you for awhile, glad to hear that you continue to do well. Happy New Year !!
      Linda
      Onward and Upward !

      Diagnosed 4/07 HCM with fixed & dynamic obstruction
      Myectomy with resected cordonae tendonae 4/08 CCF
      ICD 10/08

      Comment


      • #63
        Re: Let's have a "Running" discussion

        I don't like the term 'mild HCM' and never have.

        I know that there are doctors out there who use it so I suppose we can't really blame patients for using it as well, but it just totally misrepresents the disease in a way that makes me somewhat angry. Sudden cardiac death is at best a crapshoot for all of us. Our experts have outlined major risk factors for SCD but even they will tell you that there really is no definitive way of telling who will suffer a sudden cardiac death and who will not. We have folks on this board with ICD's that have never fired even once, and we've also had members with vitually no symptoms and no ICD who have died quite suddenly.

        I've always appreciated the fact that Lisa promotes exercise to the fullest extent possible given the specific limitations each one of us is presented with. Where we always seem to get into trouble however, is when people make blanket statements, and that goes both ways. There are people on this board who may come across as being overly cautious, but by the same token there are those who are quite cavalier in their recommendations that everyone should be able to attain the same level of activity that they do.

        For the most part though, I do enjoy these discussions because they always end up somewhat controversial, and this board can stand a good debate from time to time.

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

        Comment


        • #64
          Re: Let's have a "Running" discussion

          As a reminder to all, as stated in the disclaimer at the top of the message board, the HCMA provides information, not medical advice. That info is to come from your doctor and health care providers. If you are not feeling that you can trust your provider for the best care, you have to decide if that is the provider you want to continue to see.

          Jim, “For the most part though, I do enjoy these discussions because they always end up somewhat controversial, and this board can stand a good debate from time to time.” Yes, a good debate is not a bad thing. I’d like to see all of us open to debate, but being aware of how easily it can deteriorate into an argument which is not necessarily going to be productive.

          Terryberg, I totally agree with you that HCM should not be looked at as a death sentence and we should certainly learn all we can about it. Without a doubt, I agree with the positive outlook, active and healthy lifestyle, regular and competent medical care as the best approach.

          Now, the debate –A quote from Terry, “It's obvious there are mild forms of this disease, very obvious.” “Of course this is all my opinion, anything anyone writes in these forums are pure opinion.’ These statements weren’t back to back, but I see you do understand that what you see as ‘very obvious’ is also, as you state, “pure opinion”. So, my opinion – symptoms may be categorized in stages of mild or otherwise, but HCM in itself, is not predictable in those terms. There are too many variables. Even on a day to day basis in the healthy individual, the hydration status and electrolyte balance can contribute to a major incident. HCM can change rapidly in an individual, so the symptoms can be gauged to a point, but not the disease itself.

          Quoting Terry again, ‘I have yet to read a post from an MD that specializes in HCM.” No, our HCMA Medical Advisors are not in the habit of posting on our message board, but they are a very active presence and are consulted as needed. I’m sure it’s a rare day that Lisa hasn’t talked to at least one or more of them. You can find a list of these specialists on the website.

          Terry, BTW - “The fact that while I did have palpultations when my BP was up around 170/106, I did not have an electrical problem.” Palpitations come under the category of electrical. Not all palpitations cause a serious electrical problem/threat, so I’ll let you google that one for more info.

          Susan, glad you clarified – “What I meant when I said I had a "mild" form of HCM was with regard to symptoms only.” Great comment - “Such questions lead us back to more things we all do agree on - be optimistic, and also be watchful. Learn all you can, seek out excellent doctors, and follow their advice.”

          Cynthia, another excellent comment. “I do, however, always keep in mind that I have a serious medical condition that needs to be respected and dealt with even though I am currently doing quite well.”

          Terry, I really think you and I took totally different interpretations from Cynthia’s post - from you response to her statement of “We all need to be wearing those life preservers as we all have HCM which does put us at risk of SCD, no matter how mild or inconsequential our symptoms.” , I interpreted those life preservers in the context of learning, proper care, compliance, and ICD as indicated and advised. I’m reading your response as assuming she thought the “life preservers” must only be an ICD.

          We do want to provide info and support to help anyone who visits this site to leave feeling much better about how to LIVE AND LIVE WELL WITH HCM.

          If you’ve taken the time to read this entire post, thank you. Let’s move out of this year and into the next one, 2012, with a positive, productive, and supportive attitude.

          Linda

          Comment


          • #65
            Re: Let's have a "Running" discussion

            Thank you Linda for that very insightful post.

            And yes, Linda's interpretation of my post was the correct one. I was in fact speaking metaphorically...I had previously referred to us all being in the same boat, and I was using the term "life preserver" to mean that we all need to get proper treatment and take proper care of our conditions.

            I would never suggest that every person with HCM is in need of an ICD. I myself only got one after extensive testing and opinions from 4 different doctors. (I had a very unusual situation, having had a life threatening brain tumor removed a year before my ICD implantation, and was facing the reality that I would no longer be able to have follow up MR scans so I had to take the implantation very seriously).

            I only ever speak about my own experiences on this message board, and would never suggest treatment for any other person besides advising them to consult an HCM specialist about their individual condition.
            Daughter of Father with HCM
            Diagnosed with HCM 1999.
            Full term pregnancy - Son born 11/01
            ICD implanted 2/03; generator replaced 2/2005 and 2/2012
            Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

            Comment


            • #66
              Re: Let's have a "Running" discussion

              Obviosly this message board is not for me. I won't be posting or reading anymore.

              Comment


              • #67
                Re: Let's have a "Running" discussion

                Man Terry you got to get some thicker skin girl! Just because others don't see eye to eye with your opinion doesn't mean it's time to take your ball and go home. I hate that this type of thread almost always de-evolves into someone leaving because they got their feelings hurt. For those that know me know I wring every second I can out of my life. My motto is "I'd rather be going to heaven sliding into home plate with a worn out beat up body. Then to go home sitting on the couch saying my shoulda coulda woulda's" With that aside though there are some things I did give up like basketball sure I'll play HORSE every so often but I do miss a good game of 21!

                My docs here in Fl told me I had "mild HCM" my septum was 2.2 and non-obstructed. I was told to go live my life how ever I want which included being an EMT. Finally, I got up to Boston I had 4 of 6 risk factors for SCD. That was a shock! So, life has been interesting for me. I've never taken it as a death sentence all though there have been close calls. This year has been one of the best for me out of almost 10 years of having this. I pray that I stay this stable but with HCM you can never tell. But, even with that being said for the first time in 9 years of having an AICD my device paced me out of V-tach twice. So, my heart waited almost 10 years one of those instances was at work where I most certainly would have died because it would have taken forever to get an AED to me!

                So, just having a "cardiologist" looking after your HCM isn't good enough trust me I've almost died from my "mild HCM" more times than I would like to say. Dr. Maron is the one though that has kept me alive and he still allows me to do the things that I love like ride a motorcycle.

                Respect everyone and their opinions, just because you don't share them doesn't mean you should go away. There are a ton of things I don't always agree with but I've been here since this iteration of the board!
                Happy new year all!
                Mary

                Comment


                • #68
                  Re: Let's have a "Running" discussion

                  I am coming to this party late I see...
                  Linda that post was one of the most thoughtful and balanced postings I have seen in a long while.. Thank you for it and I have to say I agree completely so will nto take a great deal of space saying most of the same things!

                  I will simply add that many doctors who are not in an HCM program may also use terms like "mild HCM" and it is technically incorrect - HCM is HCM... the thickness may not be extreme.. or symptoms may be mild or risk of sudden death low.. but it is still HCM capable of creating more symptoms, becoming higher risk for sudden death or maintaining itself as a low risk mild symptom HCM.

                  Mary I agree with your post as well... Terry has been rather clear on his point of view yet when others disagree he claims he is leaving - If that is his choice so be it but its rather unfortunate.

                  Oh Terry - Doctors should not post on a messageboard there are medical/legal reasons that make this unwise - if they wish to they can but generally not wise. However I often get input from experts in individual post when they are uncommon issues.

                  In the end... let me say this.. knowing what i know about HCM.... I love to hit the gym 4 days per week and I feel great. I WISH i could jog.. but that is not in the cards for me as I can not maintain my breath when i "run" so i walk fast and use other tools to stay in shape! Always get your doctors input before you start a work out program!

                  Thanks all for your input!!

                  Lisa
                  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


                  • #69
                    Re: Let's have a "Running" discussion

                    Me again.. somehow i missed 3 pages of this thread when reading it the first time...
                    !. Darren..LOL... how come when we talk about running here your involved and i get emails about the thread cause its "heated"... Love ya just had to laugh
                    2. Do we all get the fact that HCM while can have limited symptoms and "appear" mild in thickness.. may have nothing to do with ones high or low risk of sudden cardiac arrest? If not I need to write more about it.

                    3. Terry - It appears to me in one thread you called out LindaSo in a very harsh manner - many of our readers and members have significant symptoms and problems related to their HCm.. much as you are demanding the acknowledgment of those with few or no symptoms there is the flip side... and respect for those who are having a difficult time controlling theirs or moving on to transplant.

                    4. I am so very jealous of those of you that can run... I wish i could! However you all need to understand that extreme running may well have an adverse impact in the long run on your heart.. please be careful and think balance.. and always communicate with your HCM docs.. at the end of the day in ADULTS informed consent is everything... its YOUR life do what you wish... but also keep in mind young people read this board too and their hearts are still forming... we need to encourage a complete lifestyle that includes activity .. but the majority of those with HCM will not be advised to run at a high level... 1/2 marathon etc... just ask that you keep those kids in mind when you post.

                    thanks all.
                    Lisa
                    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


                    • #70
                      Re: Let's have a "Running" discussion

                      Originally posted by Eileen2345 View Post
                      (This is a kind reminder.)

                      For anyone who has had a myectomy, they not supposed to get their heart rate above 130 bpm. (I'm almost sure it's 130, I know it is a little more than 120 bpm, but not much more than that.)

                      So, if you do run, jog or bike, please remember that.
                      I think 130 is too low to have to limit yourself to that. After my myectomy in Oct. 11' during cardiac rehab, they let me run on the treadmill until my heart rate would get up to about 160 BPM. Then I would back off. I am 57 years old, but in pretty good physical condition and in rehab was able to run for the first time in my life. Now I can run 6 to 10 miles with my wife for the first time at a reasonable pace (10 min/mile). I think it is safe to assume that high 150's into the 160's is a sustainable heart rate for me.

                      Before the myectomy at Mayo Clinic, my heart rate would shoot up to 170 and above 180 after a few minutes of sustained exertion. But now if I take it slow and steady that doesn't happen anymore.

                      Comment


                      • #71
                        Re: Let's have a "Running" discussion

                        My local guy tells me my max HR should be 147 and he would like me to keep it at 130-135 which I easily ramp up to that walking 3mph on the treadmill. Which is interesting because I can get 12mph on the bike and be in the 120's I guess which is why cycling is my exercise of choice.

                        Mary

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