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.

What is 'not overdoing it' ?

Collapse

About the Author

Collapse

bberk1 Find out more about bberk1
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • What is 'not overdoing it' ?

    Just recently diagnosed 36 year old who used to workout upto 3 times a day. I have a follow up with dr. lever in 2 weeks. But in the mean time they told me I could workout, just not overdo it. What the heck does that mean? Is there a certain hr that I should be below? Any suggestions for other activities so I don't get super depressed and blow upto 500 lbs.?

    I'm building a playhouse for my kids now. But unfortunately i'll be done soon and need some other ideas. I'm not looking forward to my next appt. as I think I might have to sell off all my bikes and other equipment that I love.

    Thanks

  • #2
    Re: What is 'not overdoing it' ?

    I am in the same boat as you, 40 years old when diagnosed and within a span of 6 months I know have an ICD. Still asymptomatic. If I may suggest, don't sell your bikes.
    I had taken pictures of my bikes and was about to place the add on Craigslist. My wife talked me out of it. I still have my bikes and still ride them. Not competatively by I still go on mountain bike rides and road rides at a slower pace. i am so glad I did not sell them.
    I feel that giving up exercise which has been a big part of my life for over 25 years would kill me mentally and put me in a state of depression.
    My 2 cents, good luck

    Comment


    • #3
      Re: What is 'not overdoing it' ?

      Hi and welcome to the HCMA message board. I see that you are a new poster, so to speak and I think you will find lots of information that will be beneficial to you. How wonderful that you live in Cleveland and will be seeing Dr. Lever in a very short time. Many of us travel quiet a distance to CCF and continue to do so.

      First, don't panic about what you may have to sell off. You may not be selling anything off !! Each of us is an individual, and each of our hearts are a bit unique from each other too. HCM is a very unique in terms of presentation, management, etc. So, with that being said, hang in there for the next 2 weeks. You are going to get alot of responses from a variety of folks that I expect that will be very oposing views. First, you want to hear from the expert about what it is that YOU can/can't do. First, you can call the cardio back, who said not to overdo and say, this is what I do and for how long, can I continue? You can also ask if there is a max HR at this point. Use your head and don't do anything that would be considered "extreme" for the general population. Right, the general population doesn't do XXXX, so I should wait. Listen to your body. If you get SOB or chest discomfort, dizzy, etc you are pushing beyond your limit at this point. Obviously, you don't want to add extra "strain" on your heart. You don't want to do any exercise where you would "hold your breath", like lifting heavy weights. HR's are unique too. The degree of your limitations will be determined based on all your studies. You will have that provided to you at the end of your appointment. Start a list now. Trust me, in 2 weeks, I expect that you will have a lengthy list. In the meantime, I have attached a link below to some activities. This will be a good overview.

      I'm sorry about your diagnosis, but am glad you found us ! Ask as many questions as you want!! All of us with HCM have been right where you are now. If you haven't already called the office, I recommend that you do. There, they can help you prepare for your appt with Dr. Lever.

      http://www.guidelines.gov/summary/su...c_id=5592&nbr=

      Linda
      Onward and Upward !

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

      Comment


      • #4
        Re: What is 'not overdoing it' ?

        I think Linda's advice is pretty solid. I know that 2 weeks can seem like a long time, but . . . it's 2 weeks. Even I can't blow up to 500 lbs in 2 wks!

        More to the point: be active, but not to the point of being very strenuous (again, it's just 2 weeks). Go for a bike ride -- just don't do that 100 mile (or 50 mile) ride you're used to. What ever you do, don't put yourself in the position that you must keep going even if you feel bad (short of breath, light-headed, chest pain, unusual heart rhythm -- any of these). I realize that means either a much shorter ride, or a repetitive ride (so you can stop and go home easily, if you have symptoms) but live with it for a couple of weeks.

        And as Linda suggested, ask your cardio if they can be a bit more explicit as to what he meant by not overdoing it.

        Gordon
        Myectomy on Feb. 5, 2007.

        Comment


        • #5
          Re: What is 'not overdoing it' ?

          Thanks all for the quick responses. The link was especially helpful. Funny that you say not to hit the 50 or 100 mile ride as I was already signed up for one this weekend. Now that I can't do that I have to goto a 5 year old bday party. yuck.

          Comment


          • #6
            Re: What is 'not overdoing it' ?

            One guideline we were given for "not overdoing it" was only exercise at a level at which you could maintain a conversation. As others have said, your individual condition will be evaluated and the doctors will help set some guidelines.

            Comment


            • #7
              Re: What is 'not overdoing it' ?

              Hi
              I recently participated in an HCM patient day at Stanford. I was told that a target range of heart rate could be suggested after I have a stress echo. I haven't had that yet, but I'm guessing that one of those will be a part of your workup.
              Some general guidelines coming from the doctors at the HCM Center there: Avoid "burst" sports which require sporadic bursts of effort. Some of these are singles tennis, basketball, soccer, etc. Stay hydrated!! The doctors encouraged the consumption of electrolytes, as in sports drinks. Stay hydrated!! Warm up slowly to a moderate pace of exercise, then cool down slowly. Did I mention stay hydrated?
              While I await the opportunity for a stress echo, I'm finding these suggestions helpful in guiding what I do. I hope you will, too. Happy trails, and welcome!

              Barbara

              Comment


              • #8
                Re: What is 'not overdoing it' ?

                If you wear a heart rate monitor, this can also help you gauge how your body does with excercise. With Cardiac Rehab, folks learn (and re-learn) how their body adapts to the stess of excersise. Please remember that just because you did X one day and your body reacted fine, some days it wil vary (the fickle HCM heart) and you really do have to listen to your body.

                It will be an adjustment, but in time you'll adapt to new challenges and the same rush and excitement you get with excercise will come back. So don't sell the bikes, no need to buy industrial strength scales or invest in caftans.
                You'll do fine.
                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


                • #9
                  Re: What is 'not overdoing it' ?

                  "B". You got me thinking........ a birthday party for a 5 year old. Well, if you really want some exercise, maybe you could join in the games? lol Do they still play games at birthday parties, or am I really dating myself? Do they even make "Pin the Tail on the Donkey" anymore?

                  Hang in there, B !!
                  Onward and Upward !

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

                  Comment


                  • #10
                    Re: What is 'not overdoing it' ?

                    Also remember do not lift weights over 50 lbs. I agree do not sell your bikes, you will just have to gauge down a little. You have been given good advice so I will not repeat.
                    Midge

                    Diagnosed in 1977, Myectomy in 1981 @ Mayo Rochester
                    ICD&Pacemaker 1996
                    Heart transplant March 19, 2004 @ Mayo Rochester
                    Mom of Kaye.

                    Comment


                    • #11
                      Re: What is 'not overdoing it' ?

                      Welcome - Please do call the HCMA office. You already have your visit lined up with the HCM Center, so you are in fine shape there. Talking to the folks in the office, in addition to responses here on the message board, will help you prepare your list of questions and guide you in planning for screening other family members.

                      There is so much information to take in, and probably most of it new to you, so try to have someone with you when you have your visit to Cleveland. It's hard to remember it all, even when you take notes.

                      Best wishes - Linda

                      Comment


                      • #12
                        Re: What is 'not overdoing it' ?

                        I'm a 42 year old female with HCM and I:

                        Do not have an ICD (yet~doctors said probably eventually~my brother does)
                        take 100 mg of toprol xl daily
                        registered to run a half marathon with my daughter on Aug 2nd
                        registered to bike in a 100 mile bike ride in Oct. (50 miles per day)
                        work out daily~run, bike, spin, weight train
                        Always wear a heart rate monitor
                        stay hydrated
                        listen to my doctor
                        listen to my body

                        Everyone one is different and must to listen to their doctor. I did pass out while running and the doctor didn't want me running for awhile....I didn't run for about nine months until he felt all the test results were coming back okay and it was safe for me to run again. During that time I stayed active by walking with ankle weights. Just be smart and listen to your doctor.

                        Comment


                        • #13
                          Re: What is 'not overdoing it' ?

                          Ahhh. I wish I already had my appointment. I so want to run and run hard. I miss it. I miss the camaraderie. I've made many friends running and biking. I miss pushing myself. I miss the discipline and dedication. I miss figuring out what race to sign up for next. I miss wearing my spandex (not).

                          Did I mention that I've taken up drinking in the meantime.

                          Comment


                          • #14
                            Re: What is 'not overdoing it' ?

                            I think once you meet with a specialist you will realize the wait was worth it.

                            I was running before my diagnosis and a cardiologist who wasn't a specialist in HCM told me I could continue to run. I saw my HCM specialist and he said no running- so I jog and I do lots of other things to keep in shape as well- I am actually going to buy my first bike in like 20 years soon and start biking. Mind you, my septum is only 1.1-1.2 (according to my last reports from Mayo that I just got) and I have no symptoms at all. Matter of fact, one echo tech this last visit asked me why I was there and if Mayo had actually given me this HCM diagnosis, he seemed in disbelief. LOL.

                            I do have a family history of sudden death with this condition and I also have an ICD because of that very reason.

                            Many people on this site are told to keep their HR below a certain level, my specialist said I didn't need to (though my ICD is set to zap at 220- it's that high because I do work out so much). Like Dr. Ommen talked to me about at this last visit, we want our HCM patients to be active and exercise, but there are certain things that just don't jive with HCM, especially those things that involve the short bursts of starting, stopping, etc.

                            Your specialist will help you out so much and together you guys will figure out what workouts will be okay for you and what won't. It's just such an individualized condition, which is why seeing a specialist is best- they truly know what they are talking about. =)

                            Comment


                            • #15
                              Re: What is 'not overdoing it' ?

                              B, everyone with HCM is different.


                              Pattie, who is 42 years old, said she is signed up to bike 100 mile bike ride (50 miles per day).

                              Well, I am 45 and and if I even tried that, I would be dead. I can bike 2, maybe 3 miles. But I would have to take a break.

                              I remember when I was 14 years old I had to run one lap of track in high school. The entire class finished much faster than me and the class had to wait for me. As I'm running I'm thinking I'm gonna die I was so out of breath.
                              The coach was so angry at me for making everyone wait, (he thought I was being lazy), he dismissed the class and made me run the track again. At one point I was barely walking it, he called me names the whole time. I was lucky I completed the 2nd time, I remember lying on the track afterwards.

                              I was 14 years old and could not run. And I was not overweight then, and am not overweight now.

                              You may want to consider having your children tested in the future.




                              Please stay hydrated, that really is important.

                              I love The Cleveland Clinic, Dr. Lever is the best.

                              Please keep us updated.


                              Hugs
                              Eve
                              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

                              Today's Birthdays

                              Collapse

                              Working...
                              X