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

  • #16
    Re: Let's have a "Running" discussion

    Originally posted by Lisa Salberg View Post
    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.
    Email Sent!

    Originally posted by Lisa Salberg View Post
    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.
    Yes, I guess Jogging is probably the more accurate term (especially in my case *grin*)

    Originally posted by Lisa Salberg View Post
    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 like hearing that! I hope with time they find it to be accurate. I certainly understand that it is a bad idea for someone with HCM to sprint/stop/sprint or to start jogging and really push themselves hard without working up to it. It also seems like it would be a bad idea for someone with HCM to run regularly for months, then take a couple months off and expect to start up again and push just as hard as they were before the break (someone with a perfect heart can probably get away with that, not those with HCM).

    Originally posted by Lisa Salberg View Post
    I admit it... Darren I am JEALOUS... I WISH I COULD run... i simply can NOT...
    If you are ever in San Diego, look me up.. we can JOG together. It's "miles and minutes" for me... not so much speed (I do tend to be competitive, but can certainly enjoy a slow jog/walk too).

    Originally posted by Lisa Salberg View Post
    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
    Lisa,

    Right back at you. I respect your opinions, the way you run the site and all you do for those with HCM. I'm impressed and feel blessed to have found the HCMA.

    Hugs AND DOUBLE thanks for all you do, I know running the HCMA must be a TON of work!!!!

    -Darren

    Comment


    • #17
      Re: Let's have a "Running" discussion

      I'd like to echo David's post - I'm not a runner, and if needed, we can go to a new thread. I am a climber (mountains and rock) and a SCUBA instructor. I asked Dr. Ommen specifically about diving and was given a conditional green light: "Do as much as you feel comfortable doing." I've never gotten a clear answer about mountain climbing. The literature I've read seems to say "don't." (The literature also says I shouldn't SCUBA dive, but I trust Dr. Ommen's adivce).

      I am currently involved in a good cardiac rehab program and am gaining strength weekly. I want to begin (in a few months) easy, short hiking to see what my body may tell me about increasing the incline towards a mountain. I have spoken with the rehab doctor and the cardiac nurses, and all have told me that if my body can tolerate climbing, I can pursue it - while listening carefully to my body (which I've learned to do).

      Anybody have any similar experience with the hills?
      Married, father of four, grandfather of three
      Symptoms of HCM for at least thirty years
      Diagnosed with HCM, July 2009
      Verapamil, Beta Blockers
      Extended Septal Myectomy, Mayo Clinic, Dr. Hartzell Schaff July 29, 2010

      Comment


      • #18
        Re: Let's have a "Running" discussion

        Darren,

        I agree, there are some kids that do not give the effort they should.


        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).
        Agreed that they should error on the side of caution.

        The coach or PE teacher is a Physical Education Teacher, with that should come some education on their part and common sense.

        I was not overweight (I was very thin), and I was clearly completely out of breath and sweating badly while I was trying to run the first time around the track. He should have noticed that while he was running next to me and yelling in my face.

        It wasn't until after the second time around the track when I was laying down on the ground that he finally left me alone.
        He should have seen the signs that there was a true struggle the first time and that I was not lazy or faking it.


        I'm glad you are able to do the amount of physical activity you are. I'll admit, I'm jealous, but happy for you. I'm glad some people with HCM can run or jog.
        The very fact that you can gives other people hope and inspiration.
        Last edited by Eileen2345; 10-14-2010, 03:17 PM.
        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


        • #19
          Re: Let's have a "Running" discussion

          Greg,

          The Scuba question is a good one. I too Scuba dive (but I HIGHLY doubt my doctor would give me a green light to do it)... That would probably be a good topic for a new thread since I suspect many of us would like to discuss the effects of diving on the heart and people with HCM.

          The same may be true for people that climb mountains. To me jogging/running are a piece of cake compared to climbing a mountain at altitude where having a problem could result in likely death... most sports allow for us to stop and rest or at least within a couple minutes time slow down.. mountaineering doesn't seem like one that would allow that and diving isn't much different (they are not very "forgiving" sports.

          -Darren

          Comment


          • #20
            Re: Let's have a "Running" discussion

            Thanks for the feedback Eileen. Again, I'm sorry to hear that your PE instructor was a jerk. I hope that my activity level remains high enough that I can give others with HCM hope (without having them take unnecessary risks).

            -Darren

            Comment


            • #21
              Re: Let's have a "Running" discussion

              Darren,
              My guess is that the stiff neck is related to stress.

              I run about 3 x per week, about 3 miles, but I always wear a heart rate monitor and I keep my heart rate below the level that my HCM specialist set for me. I have septal thickness of 1.9, am pretty asymptomatic (I do avoid hills), but I did get a defibrillator implanted 6 weeks ago due to family history of SCD.

              I am really careful about monitoring my heart rate. My device was "interrogated" for the first time on Friday, and they mentioned a specific date that my heart rate was really high (190). I know on that day, I got carried away during my run - I was feeling great! But I slowed down as soon as I noticed how high my heart rate was because I realized that I was within 24bpm of getting "therapy" (a shock) from my device. Yikes!

              I think it is very important to get advice and clearance from your HCM doctor on the specific level of activity that is safe. I am really happy that I am still able to run, even though my pace is really slow. I am doing a 5k next week and I am fine with coming in last.
              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


              • #22
                Re: Let's have a "Running" discussion

                Susan,

                I'm glad to hear that about the neck aches

                As far as the heart rate monitor, I used to not wear my heart rate monitor, but now I generally do (I have it set to alarm if my hear rate exceeds 170 (it's usually around 140-150 when I'm running. I'll make a note to ask my specialist what his recommendation is with regard to max rate. I've never had symptoms or issues, but have considered an ICD as insurance. Don't know if that would or would not be a good idea. I agree with your comment about finding out what a specialist thinks with regard to running. I'd caution people to make sure that the specialist is well informed and doesn't knee jerk to the "you have HCM so you should not exercise" or the other extreme "go for it.. anything is ok". There is certainly a balance and it is different for each individual based on their situation, heart and life. Good luck on the 5k! I'm thinking of doing a 1/2 marathon in a couple months (if I can keep myself disciplined to run regularly until then)... it will be my 7th in the past few years. Slow and steady is my rule (and if I don't feel well, I will walk or even stop). For me running is all about "miles and minutes" slowly enjoying the time outside and SAFELY (as much as possible) enjoying it.

                -Darren

                -Darren



                Originally posted by Susank View Post
                Darren,
                My guess is that the stiff neck is related to stress.

                I run about 3 x per week, about 3 miles, but I always wear a heart rate monitor and I keep my heart rate below the level that my HCM specialist set for me. I have septal thickness of 1.9, am pretty asymptomatic (I do avoid hills), but I did get a defibrillator implanted 6 weeks ago due to family history of SCD.

                I am really careful about monitoring my heart rate. My device was "interrogated" for the first time on Friday, and they mentioned a specific date that my heart rate was really high (190). I know on that day, I got carried away during my run - I was feeling great! But I slowed down as soon as I noticed how high my heart rate was because I realized that I was within 24bpm of getting "therapy" (a shock) from my device. Yikes!

                I think it is very important to get advice and clearance from your HCM doctor on the specific level of activity that is safe. I am really happy that I am still able to run, even though my pace is really slow. I am doing a 5k next week and I am fine with coming in last.

                Comment


                • #23
                  Re: Let's have a "Running" discussion

                  No neck aches, but a strange feeling in my lower jaw. I've read that among wimin it's sometimes reported in connection with heart desease. Personally i think it's lack of oxygen when pushing it.

                  To keep this tread strictly to running, i just have to tell the community that i have been out running today. It was to dark for biking when i finally was off today (garden work, tidy up, etc. etc), and i'm tired of the step-machine (been a lot of rain in the Oslo area lately). I did a few miles (to keep the measures in US-style) this afternoon. Long time since a used my running shoes (actually a borrowed my youngest sons new Adidas), and, as usually, it was a shock to not be able to rest in the downhills like we do on a bicyckle.
                  Anyway, it works pretty well anyway. No attacks, just a litle miscomfort just after the run, which is normal due to a sudden drop in BP. My ticker like a bit restistance. Due to BP medicin the pump has less than normal pressure to work against. The thought among my doc's is of course that less pressure for the heart is good in the long run.

                  Anyway, i did the run, first time since....ohhhh, must be 5-6 months. Actually i think it was an afternoon in Central Park, NY. We visited NY on our way back to Norway on our 1-year blue ocean voayge. We stayed at the 79 street Boat Basin Marina just a short distance from the park.....yea, you got it, it's only re-runs on the telly (British short for TV) tonight, so i rather spend my time in here......
                  Gabriel
                  ------------------------------------------------
                  I'm Norwegian and live in the Oslo area.
                  Genetic HOCM diagnosed in 2008 (at 49) My kids are tested and found negativ
                  Medical treatment:
                  Isoptin Retard 120mg twice a day
                  Amlodipin actavis 5mg once a day
                  Albyl E 160mg once a day
                  Septal myectomy and insulation of the pulmonary veins at 10 April 2012
                  Interests: bicycling, skiing, yachting, ex-marathon'er and offcourse my kids future in general

                  Comment


                  • #24
                    Re: Let's have a "Running" discussion

                    I have not been on the forum in quite some time. I was diagnosed with HCM a few years ago because of some complications I experienced cycling. At the time I raced road bikes and mountain bikes religiously. I trained 6 days a week, had a coach and raced 20+ times a year. My symptoms are minor along with the the actual thickness of my heart. I live within a few miles of the Mayo Clinic here in Jacksonville and I have been put off getting an ICD for a few years as well for various reasons.

                    I still ride quite often and while I am very in tune with my heart, heart rate and physical abilities- I do all that I feel up to doing, but keep it below race level. Recently I've been training for a half marathon. I've put the bikes to the side to concentrate on running- I've been running 20+ miles a week and tonight I ran 8.5. I typically train in heart rate zones and my avg heart rate during a run or ride is 150-160 while hitting the 180's during hard efforts. Considering my training history, I know my limits very well. I also know that hydration helps with symptoms but living in Florida and training the way I do, hydration is always hard for me to keep up with.

                    Anyhow, before I rambled away, it is nice to hear about other athletes on this forum. My daughter is 10 and has been screened for HCM (she's clear)- she has completed several triathlons, several 5K's (and a 15K!), plays soccer and has been racing bikes since age 4. My wife is also a triathlete and will be cometing in the Florida Ironman next weekend. This is simply our way of life and I know no different. The docs at Mayo are well aware of everything that I do (my PCP is also at Mayo) and have explained how to be cautious. Like anything, all that I do is a personal choice at the end of the day...
                    Todd
                    .......__o
                    .......\<,
                    ....( )/ ( )
                    BigBlue'sBlog

                    Comment


                    • #25
                      Re: Let's have a "Running" discussion

                      I got my ICD in March. I am feeling pretty comfortable now when I run. I fell about 6 weeks after I got it. Was really scared. Went to my Cardiologist and had a Medtronic test it to make sure everything was working. I think I just tripped. There was nothing irregular. Device is still working fine.

                      I have been lifting to but still taking it really slow. Especially with chest exercises.

                      I would like to walk a 1/2 marathon but I have been told not too. I did walk one prior to getting my ICD.

                      Laters
                      Benjamin
                      www.icando.spreadshirt.com

                      Comment


                      • #26
                        Re: Let's have a "Running" discussion

                        Congratulations with silver for the ladys in NYM. Shalane Flanagan really did a good race. If she had been a bit more strong when they approached the Columbus Circle, i'm sure she would give Edna Kiplagat something to think about in the finish. Mary Keitany on third was all gone when she finished, so it was never any challenge from that part.

                        Feel a bit sad to know that i never will be able to cross a marathon-finish line anymore. I took some pictures of me when i was in NY in may on the finish line, and had a silent moment thinking about the time a finished the NYM for some years ago.
                        Gabriel
                        ------------------------------------------------
                        I'm Norwegian and live in the Oslo area.
                        Genetic HOCM diagnosed in 2008 (at 49) My kids are tested and found negativ
                        Medical treatment:
                        Isoptin Retard 120mg twice a day
                        Amlodipin actavis 5mg once a day
                        Albyl E 160mg once a day
                        Septal myectomy and insulation of the pulmonary veins at 10 April 2012
                        Interests: bicycling, skiing, yachting, ex-marathon'er and offcourse my kids future in general

                        Comment


                        • #27
                          Re: Let's have a "Running" discussion

                          Well, Shalane gave a fantastic debut performance, but Edna did not leave anything to question in the end. I was also surprised to see the time gap between the top 3 men finishers. What a beautiful day for it!

                          Gabriel, it is wonderful that you have this past experience to look back on. Just cherish it.

                          I have been jogging for exercise and the pleasure of it for years. Only last year I started working on improving my pace and started doing 5ks. I was preparing for my first 10k when I was diagnosed. Now I am focused on keeping my heart rate from getting too high.

                          I participated in a 5k just for fun a couple of weeks ago and was a little embarrassed when a young friend asked my my time... I didn't want to admit that 35 minutes was a personal best! The fact is, my heart rate was just under the maximum my HRM doc ok'd for the entire race. It just is what it is. I am grateful that I can run and hope that doesn't change.
                          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


                          • #28
                            Re: Let's have a "Running" discussion

                            Congratulations with your 5k Susan (was it the girls-run in NY?).
                            As you know, all distances are actually hard because you will always try to keep the max-pace related to the distance.

                            About your young friend..., he should know that just finishing a 5k is something not very many with HCM and an ICD do......if he dont know about your condition, just tell him. He will be impressed.
                            Gabriel
                            ------------------------------------------------
                            I'm Norwegian and live in the Oslo area.
                            Genetic HOCM diagnosed in 2008 (at 49) My kids are tested and found negativ
                            Medical treatment:
                            Isoptin Retard 120mg twice a day
                            Amlodipin actavis 5mg once a day
                            Albyl E 160mg once a day
                            Septal myectomy and insulation of the pulmonary veins at 10 April 2012
                            Interests: bicycling, skiing, yachting, ex-marathon'er and offcourse my kids future in general

                            Comment


                            • #29
                              Re: Let's have a "Running" discussion

                              It's neat to read all the discussions with regard to running. The NY is really neat, but being from Boston, I like to hear about that marathon when it happens.

                              If you've seen the kids movie "The Incredibles", I sometimes feel like those of us with HCM have to act like "Dash" did at the end of the movie when his parents were cheering him on, but telling him not to go too fast ... "second place, that's the way...". There is something to be said for those of us who want to push it, but show the control to hold back a bit.

                              -Darren

                              Comment


                              • #30
                                Re: Let's have a "Running" discussion

                                Gabriel,

                                BTW, it must be a dream come true to be able to spend an entire year at sea! I'm jealous.. if I ever win lotto, you will see me doing the same.

                                Comment

                                Today's Birthdays

                                Collapse

                                Working...
                                X