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.

Let's have a "Running" discussion :)

Collapse

About the Author

Collapse

Darren1 My real name is Darren, I have HCM and am a VERY active person that loves to exercise. Find out more about Darren1
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Let's have a "Running" discussion :)

    Hi all,

    *** First a little history: I was pretty active in the forums but haven't been the past couple years. If you don't care to read my abbreviated life story, scroll down to the "Running" portion (about 3 paragraphs below) ***

    My name is Darren (If I could get my name changed from Celtic to Darren on the forum, that would be great). I was raised in the Boston area, but now live in Southern California. Yes, I am a Celtics and Redsox fan!

    I'm 42 (as of August, 2010). I was diagnosed with HCM about 6 years ago. My septal thickness is 24mm, no anomalies aside from thickness have been detected during echo's (including a "stress echo"), no obstruction, no meds, no symptoms, etc. I'm very fortunate as far as HCM is concerned.
    I'm also a husband and father of three children ages 10, 12 and 14. I was adopted and know very little about my genetic history, I suspect that my birth-father had HCM because he died young, somewhere in his 40's. His alcoholism (no, I don't drink), smoking (I don't smoke either) and other bad habits may have been factors as well. My birth-mom and I have been in contact occasionally, she told me what little I know about my birth-family history... If you really want to know more, send me a private message, it's a loooong story. I was adopted by my adoptive parents as an infant in a "closed" adoption. How I found my birth-mom and etc could fill a small book.

    Of my three children, the two older ones are clear of HCM. One has the gene but it was never activated (or something like that, I forget exactly what the genetics doctor said). My youngest has HCM and though he is only 10, his septum is thicker than mine. Personally, I think it's easier having HCM than having a child with it.. I worry a lot more for him. So far, he is doing very well.

    *** Now the "Running" discussion ***
    I'm a runner with HCM. I run regularly (3-5 days a week), I run moderate distances (4-6 miles, sometimes more) and I run at a moderate pace (if I feel too fatigued or short of breath, I slow down or stop and walk).

    I first began researching HCM when I was diagnosed about 6 years ago and thought I'd have to stop or greatly change my running routine. I posted some questions about running, "active sports" and etc here at HCMA and the general feedback I received was "don't". I think that over the years, that opinion has changed. I do realise that every person and case of HCM is different, so what is ok for one person may not be for another. Please keep this in mind when reading my post. As I was saying, over time, the discussion unfolded and I found a lot of people starting to say "it depends.." and even "appropriate exercise is probably good for someone with HCM". That made sense to me and I've continued running. Today, I'm still running, but I'm a lot more willing to walk, stop or slow down if needed. I also "listen" to my body more now. Not to mention that turning 40 has slowed me down a bit

    The reasons I'd like to start a "Running" discussion again (I started one years ago and it was a very popular topic) on the HCMA board are to get feedback, allow others to share their experiences, enthusiasm, cautions, concerns, etc. and create an environment where people that like to run/walk/jog and have HCM can openly communicate.

    Let me know your thoughts/opinions, if you run/walk or jog, how far, what your diagnosis is, if you take meds, have symptoms, etc..

    I look forward to hearing from other HCM runners!

    -Darren

  • #2
    Re: Let's have a "Running" discussion

    Darren,
    I don't run, I did before my diagnosis two years ago (had just taken it up) but I do jog and walk a lot. I don't do tons of miles, on Saturday I did 3 miles of walking and jogging, which is pretty typical. Sometimes it's only 2 miles depending on the time I have, which is very little. I have an ICD as well...my septal measurement is only 1.3, no symptoms, I take a calcium channel blocker daily and see my specialist once a year. I will only jog as long as my specialist gives me the clear to do so, if there's a day he says no more, then I will just walk. I don't want to do anything that he says would be too hard on my heart, so I listen to him. I enjoy jogging and wish I could do more. My friend asked me to do a triathalon with her about a year ago and I turned her down. Even with my ICD, I decided training for that would be too much. I do so wish when I hear her talking about the triathalon's she's done since, that I could be doing them too, but my reality is that it won't be happening because that's not what's best for me living with HCM. So, I'll stick to jogging and walking instead.

    On a side note....I hope your oldest son who is gene positive gets a regular check for HCM. Both of my boys have the gene but do not have the condition as it hasn't developed yet, but there is an 80-90% chance that it will develop at some point in their lives (no telling when), so they are checked yearly by echo- per my HCM specialist. So, if I'm understanding what you are saying correctly....your oldest son does have the gene but hasn't yet developed the condition. From what I've been told by my genetics specialist and my HCM specialist and everyone here on the board, if someone has the gene for HCM then that means there is an 80-90% chance of developing HCM at some point in their lives and should be checked regularly.

    Kaye

    Comment


    • #3
      Re: Let's have a "Running" discussion

      I echo everything that Kaye says about your kids.

      Re: exercise, I also walk regularly and exercise on elliptical trainers, recumbent bikes, etc. I jog sometimes interspersed with walking (i.e. while it is comfortable I jog for a block or two. Then I revert to walking).

      I also have an ICD like Kaye and take both a beta blocker and a calcium channel blocker. Before my myectomy my symptoms would have prevented any jogging at all. Now, I use my comfort level and my guide and do not get my HR over 120 (though with my drugs, my HR usually doesn't get over 100 too easily).
      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


      • #4
        Re: Let's have a "Running" discussion

        This is my first posting since joining, I'm amazed, I can barely walk to my mailbox or up a flight of stairs without stopping to rest. I got My ICD in May of 08, and I've been in Afib since Jan. 2010, I've had two failed attempts @ electro cardioinversion and I'm waiting for a PVA procedure and I just wish I could go to the hardware store and walk from one end to the other. My question is; How do you build up enough stamina to walk a couple of miles?
        Sister died of undiagnosed HCM in 1974, aged 13
        Mother recieved heart transplant 1994, aged 51
        (and she's still goin'!!)
        Uncle died of HCM burnout 2001, aged 66
        Aunt died of HCM burnout 2006, aged 49
        2 cousin w/ ICDs before the age of 30
        Me: monitered but asymptomatic until 2004, age 40
        Medtronic ICD and right side ablation 05/08
        PVAI to control persistant A-fib 11/10

        Comment


        • #5
          Re: Let's have a "Running" discussion

          Darren - we share a lot. I'm also adopted, BF died in his late 40s (and of course, I DX'd at the same age). 3 kids (all clear currently, no genetic testing yet). I used to run with my AF when he took it up after retiring. My knees & feet couldn't handle the abuse and truth be told - I think I was exhibiting signs back then which I ignored. Having 4 knee surgeries, one foot neuroma (and another that needs to come out) I don't see myself crossing any finish lines soon. We have many athletes on the board & I know they'll chime in. Until then I wish you well, and remember to keep listening to your body. Sometimes it whispers so you have to be careful.
          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 . . .

          Comment


          • #6
            Re: Let's have a "Running" discussion

            personally, I just hate to sweat........therefore I don't run.
            Onward and Upward !

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

            Comment


            • #7
              Re: Let's have a "Running" discussion

              If you want to limit this thread to just running, then I should start another thread. But I thought I'd chime in since I am very active, I did a hike on the Appalachian Trail 3 months after a myectomy in January. I'm going on another AT hike in mid-October. I climb at our local indoor rock gym. The exercise guidelines I've seen place rock climbing in the highest risk category, and I can tell you from personal experience that this is a gross generalization. It would be like saying running is high risk. It's all how you do it. I take easy routes, nice and slow, and listen to my body. Anyway, I think I have some things in common with runners with HCM. I want to be active, and I think I'll do more good for my heart, body, and mind by staying active and not being overprotective of my heart. I have an ICD, I listen to my doctors but I push some things they wouldn't approve of, within reason (like there's no way they would say "fine" to rock climbing, and I listen to my body. If I feel the slightest skip or discomfort, I immediately slow down until it passes and I'm ready to pick up the pace again. That's my 2 cents as a non-runner.
              David S

              Comment


              • #8
                Re: Let's have a "Running" discussion

                Thanks for the quick replies everyone. How many of you experience fatigue during or after exercise (that is above what would be considered "normal")? I'm curious because sometime I am whooped after a run and other times I feel great.

                Of course, at times, I'm whooped even without having run. Not sure if this is "normal" fatigue, stress or HCM. I've been tested and worn a halter and nothing was showing up as irregular.

                I know this is tough to answer because it's similar to a doctor asking you if you get out of breath when you work out... who doesn't? It's not really working out if you don't at least get a little winded.

                -Darren

                Comment


                • #9
                  Re: Let's have a "Running" discussion

                  Being Whooped & normal is typical with HCM. I learned that I'm slightly dehydrated in the AM when I go to the gym. Once i found this out, I make sure to drink a lot at night & the first thing in the AM. Also, It varies if I eaten in the AM (rarely) or even what I've eaten (toast or protein shake). The joy with HCM is you never know what "HCM" your going to have day to day. I bike for 45-60 min & lift for 30-45 min. Some days its great, other days I crawl in the door.
                  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 . . .

                  Comment


                  • #10
                    Re: Let's have a "Running" discussion

                    Anyone ever get neck aches? Is this a side effect of running (bouncing along the road for an hour +)? or HCM? (or just stress in general?) I get some and originally thought they were linked to running.. but when I've gone a month or more w/o running, I still seem to be a "stiff neck" at times -Darren

                    Comment


                    • #11
                      Re: Let's have a "Running" discussion

                      Darren,
                      First of all please send me an email from the account your screen name is reg. to requesting the name change and I will be happy to see if the name is available and make the change.

                      Second... RUNNING...
                      I WISH I COULD EVEN TRY... but honestly I have never been able to "run" - I think there is a great deal to be said for activity such as running or more appropirately in HCm -JOGGING. There is a study underway at U of M and Stanford looking to see if this is harmful or helpful to pts with HCM.

                      As i type i am at a program on HCM... and they are talking about sports... the NO NO list... "no burst activity"... i think for many jogging does not fit into this area and may well be safe for those who can handle it.

                      I admit it... Darren I am JEALOUS... I WISH I COULD run... i simply can NOT...

                      Just a personal note... Darren - I love your posts, your attitude and your way of explaining your point of view... big hugs and thanks for that!
                      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


                      • #12
                        Re: Let's have a "Running" discussion

                        Originally posted by Brandt View Post
                        This is my first posting since joining, I'm amazed, I can barely walk to my mailbox or up a flight of stairs without stopping to rest. I got My ICD in May of 08, and I've been in Afib since Jan. 2010, I've had two failed attempts @ electro cardioinversion and I'm waiting for a PVA procedure and I just wish I could go to the hardware store and walk from one end to the other. My question is; How do you build up enough stamina to walk a couple of miles?
                        I could not walk any distance or climb stairs until i had a Myectomy, now all the pain has gone.

                        Gene
                        Myectomy, Nov 9th 2009 age 53
                        Loma Linda Univ
                        Redlands, Ca

                        Comment


                        • #13
                          Re: Let's have a "Running" discussion

                          I have never been able to run. My entire life, I could not run. Anytime I tried, I was so out of breath after just a short distance.

                          I'll tell a true story, I have told story here before, but if it's okay I tell it again as quick as I can.....


                          When I was in 11th grade in High School, the class had to run a lap around the track in gym class. (Now they call it PE class.)

                          It was April in Phoenix, so it was warm outside. The whole class ran the lap and I was the last one. I was so far behind everyone that the class had to wait for me to finish.

                          The coach or PE teacher, was yelling at me to hurry up. He embarrassed me in front of the whole class. He kept calling me lazy, and yelling -- yelling -- at me to hurry up.

                          I finally finished and the coach was so furious with me for being what he thought was "lazy" that he sent everyone back to the locker rooms and made me run the lap again !!!

                          I could barely make it, he was yelling at me the whole time. When I finished that lap, I remember laying on the ground thinking I was going to die. If I go back in my memory, I can still remember the color of the dirt I laid on.
                          The coach finally left me alone.

                          I was not overweight at all. I did not smoke or drink. I had HCM and did not know it.
                          49 yrs. old
                          Diagnosed at 31.
                          Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
                          First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
                          Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
                          Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
                          My brother passed away suddenly at 34 yrs old from HCM.
                          2 teenage children, ages 17 and 15.

                          Comment


                          • #14
                            Re: Let's have a "Running" discussion

                            Eileen --

                            There is no school that can teach common sense.

                            Comment


                            • #15
                              Re: Let's have a "Running" discussion

                              Eileen,

                              I respect your courage and positive attitude. It REALLY REALLY bothers me when people put others down. I can see the coach/teachers side as well, there are a lot of lazy kids out there who do slack off and are perfectly capable of doing better... what a waste of God given health. There are also people like yourself who have genuine issues when it comes to strenuous activity. It's probably difficult to know who needs the "kick in the pants" and who has real health issues (they should error on the side of caution, for both physical and emotional safety).
                              As much as I love to run/exercise, I do realise that "but for the grace of God go I" (I'm lucky to have my health, even with HCM and need to be thankful that things aren't much worse). I realise how selfish I am when I get frustrated to see some guy that is 10 years older than I am running a 1/2 marathon and kicking my rear (and appearing to give it much less effort). I'm quick to say "if only I didn't have HCM". I guess I should be saying "thank God I can still do this with HCM".

                              -Darren
                              Last edited by Darren1; 10-10-2010, 12:58 AM.

                              Comment

                              Today's Birthdays

                              Collapse

                              Working...
                              X