Using weights

[caroline]

I was not diagnosed as HCM until I was 57. All my life I could not run or even jog. I'd collapse when I tried. But I could use weights. I've been working with weights for many decades. I slowly work up. When I was diagnosed they all told me no weights, and I told them to forget it. I had no intention of stopping doing what I'd been doing for so many years with good results. I simply leveled off on my efforts. Then I found it boring to just keep doing the same thing, so I started working up an the weights again in 2 pound intervals.

Recently they were discussing a defib with me and they said that my heart didn't show that much thickening. Now if you reach the age of 60 and after decades of weight lifting there is no effect, it hardly seems like such a no-no. Of course that just me and for others it might be a problem.

I do believe that each well toned muscle in my body aids my weak heart. I continue to do a substantial weight routine on Medex machines at the gym. Back lifting 230 pounds, leg presssing 300 pounds for instance. There is nothing that makes me feel worse than neglecting my weights.

It really is an individual situation--Guidelines are only guidelines. Being a weakling is a big risk factor in life in many ways other than HCM. We all have to make our own choices.

[Toogoofy317]

Re: Using weights

Caroline,

This is my thoughts on weights. I'm not a doctor but have some training and still working at it albeit slow due to this wonderful condition. If my heart could keep up with my brain I'd have been half way to my goal. Oh well, anyhow.

I too was told no heavy weights but then I did alot of research and found that where the risk seems to be not in the weight but in our breathing. When you do heavy strength training it tends to anearobic which means without oxygen. Well, our enlarged hearts need more oxygen than the average person. That could lead to arrythmias which could be extremly dangerous if you are exercising alone. I see that your doc is recommending an AICD as it is which could make you at a higher risk.

This is what I do and I've gone from 215 to about 175 since February. I lift weights which aren't too light but not too heavy. My secrete is to make sure to consciously breathe during the whole time. I also do six sets of reps instead of the traditional three. So, maybe that will help half the weight and double the reps.

Just a thought!

Mary S.

[Lisa Salberg]

Re: Using weights

Weight lifting is not an activity that is recommended for those with HCM for many reasons. Free weights are a danger for several reasons one of which is in the event someone is to become lightheaded and drop the weight they could become significantly injured. Further the long term effect of chonic weight lifting on an HCM heart is unclear and may actually lead to disease progression and increased symptoms.

You should not participate in this or any other physicial activity without first discussing it with your cardiologist in detail.

Be well, be healthy and most of all be safe!
Lisa

[Reenie]

Re: Using weights

I guess that if the doctor ok's light weights, then you can use them for toning, but to lift heavy weights would worry me a lot. I can only imagine the stress on the heart when it helps your body strain to lift these weights. I wish you both well during your continued means of physical fitness.

Reenie

[mtlieb]

Re: Using weights

Good for you, Caroline...

It's great to see someone living their life on their own terms. You're a big girl, you know what the risks are, and you're doing what you feel is best for yourself. Nobody can fault you for that.

I've decided to start back into weightlifting myself, and while I'm at it I'm going to 'bend' a few other of my doctors' orders as well. I understand the reasoning behind them, but to be honest my health has deteriorated drastically under all these restrictions. Some of that unfortunately is the progression of my HCM, but a lot of it is not, and I only have myself to blame. There's a balance between safety and maintaining a strong healthy body, and I think maybe I've been living far too long on the wrong side of that fence.

I've been lifting weights my entire adult life. It's how I've always stayed fit. Walking and diet alone just ain't cutting it... that's not how I'm built. You can be sure I will start small and build myself up, not use free weights, and monitor myself continuously. But if what the docs are telling us is true, and having a myectomy lowers your risk of sudden death, then aren't I even safer now lifting weights than I was before? If my docs honestly feel that I'm putting myself at additional risk by weightlifting then they can put an ICD in me. Unless I'm terribly mistaken, that's what they're for... to help us live and stay healthy.

I know many will disagree with me on this, and that's cool. It's good to have some healthy debate on the board from time to time. But the simple fact of the matter is, what I've been doing for the past 5 years just isn't working, and I think I'm the only one who can change that for the better.

Great discussion... I look forward to additional comment on this.

Jim

[caroline]

Re: Using weights

Weight lifting is not an activity that is recommended for those with HCM for many reasons. Free weights are a danger for several reasons one of which is in the event someone is to become lightheaded and drop the weight they could become significantly injured. Further the long term effect of chonic weight lifting on an HCM heart is unclear and may actually lead to disease progression and increased symptoms.

Lisa and everybody---If anyone drops a free weight the evidence is that they were using far too heavy a weight in the first place. If people use ANY equipment in an unsafe manner they will have a problem, cars, ladders and gas stoves will harm us faster than free weights.

If Doctors are actually trying to learn about HCM, why wouldn't they try to investigate my situation---that of a person with significant HCM who has done chronic weight lifting for decades and has not suffered any ill effects from it.

I find it laughable that these same Doctors would simply advise me to stop exercise without thinking about it--without considering what that would do to my other serious conditions, as well as the seriously depressing effect it has on my soul.

[Lisa Salberg]

Re: Using weights

In this case I have to disagree. Free weights are not safe for those with HCM or other forms of heart disease when lifted above your head. An episode of lightheadedness, which can come one without notice, is highly possible and in fact common in this population. The actual weight is not the issue it is circulation and dizziness.

Further there is clear evidence that long term weight lifting can cause LVH in some (regardless of HCM) therefore for those with HCM the outcome is so unpredictable that it would be danagerous for a doctor to recommend this particular form of excerise. However there are many ways to excerise and HCM patients are encouraged to live an active and healthy lifestyle. Only those with severe symptoms and who are not able to be managed with medication and/or intervention are those with extreme restrictions and for obvious reasons.

I have lived a very active life for over 25 years WITH HCM (dx at 12). There are days when NO I will not be as active as others due to my health, but you learn to know your body and work with it. There are activies I do not participate because they are not good for my heart, but there are pleanty of other things I do that make up for what I can not do.

Not to steal someones screen name here but "eat well", get rest, MOVE however you can - walk, bike (on flat areas is best), yoga, tone your body and stay HEALTHY as best you can. ALL of this plays into LIVING with HCM.

The key is to do it safely. Caroline the reality is we do not know what positive or negative effects this particular excersise has had on your heart at cellular level, we also do not know which genetic mutation you have nor do we know how intense your weightlifting was and what medications may have offered any protection - or even added to risk while you were doing this excerise. Staying fit is WONDERFUL but there are reasons why some forms of exersise are better then others for those with HCM.

Keep moving and KEEP LIVING with HCM!

Best to all,
Lisa

[caroline]

Re: Using weights

Lisa,

Lucky for you, you do not have to deal with major spina bifida and diabetes as I do. I was born with a twisted leg and can not do that much hiking and no biking. I have a tethered spinal cord and most yoga is no good for me.

It must be downright wonderful to only have HCM to deal with---------- Dr. Sherrid assured me that there has been no real thickening of my heart walls except for the localized obstruction which was removed by ablation 3 years ago. That means that the weight lifting I have done for 40 years has not had this feared effect.

I credit the weight lifting with keeping me amazingly strong and healthy.

Most folks think I am a strong healthy vigorous person when they meet me. This is quite astounding given my birth defects, so numerous they are almost impossible to count. For most of my life HCM has actually been the least of my problems, even though it was quite a problem from the age of 10 on------

[Pam Alexson]

Re: Using weights

I got to jump in here.

I know that Lisa does not have spina bifida BUT, HCM is not her only issue as it is not for many of us. Lisa suffered a stroke when she was young and suffers the effects of that as well. This is common knowledge so I hope and believe that I am not breeching any confidential issues. Because of her great attitude and her focus to always look forward NO MATTER WHAT, Lisa usually makes it all look easy. Those who know her better and closely observe her are aware that she suffers too. HCM IS NOT the only issue she has to deal with. I do not think we need to compare apples and oranges here. My list of ailments and illnesses are growing quite long as time passes but hey given lemons , I make leomonade . It is not easy incorporating all issues in with HCM and for some of us our HCM has been very big and continues to be so.

I am sorry you have spina bifida as I am sorry for anyone who has a chronic illness or 2 or 3 or even more chonic illnesses. Life can be tough and challenging even with a great outlook but it still is life and good.

The facts that Lisa has spelled out here are THE FACTS as she learned them from the experts who guide her to help guide us. She did not write them but she follows them as most of us do in following what the experts have found through THEIR research NOT hers.

We all have freedom of choice and I say whatever floats your boat then go for it. Knowledge is given here based on expert reference, you must in turn take responsibility to do with it for yourself what you choose. What I am also saying is do not expect that someone who has had years of experience with learning the ins and outs of a disease and someone who has spoken to thousands of individuals and families about ways to live healthily with a disease called HCM and someone who has learned with the best of the best experts, is going to advocate a style of exercise that just may contribute to worsening their condition.

Pam

[BlueDevil]

Re: Using weights

Caroline,

What it really comes down to is this: Learn as much as you can, ask your doctors, be aware of the risks, and make an informed decision. Ultimately, you are in charge of your body and what you want to do.

I found out last year that I needed a heart transplant and was placed on the waiting list this past December. In spite of this, my oxygen numbers have remained low but consistent, the pacemaker/ICD I received in October last year has noticeably and significantly improved how I feel and tolerate exercise, and my physical self overall feels better than it did two years ago. I was recently put on inactive status by mutual agreement. I'm in the middle of a disagreement between my doctors: the transplant doctors think I need to be active on the list while the HCM doctor thinks that as long as my condition is stable and I feel OK, there's no need to rush into the life-altering trauma of a heart transplant. Bottom line, it was my decision, after a lot of thought, that being inactive on the transplant list at this time is what's right for me. I am fully aware that I am taking a risk on my life here, but as of this moment, I feel I am doing what's best for me. I am ever vigilant on how I feel with regard to the HCM and could change my mind at any given moment, but for now, this is what I'm doing.

You'll have to decide what's important for you and how much of a risk you're willing to take. That's the bottom line.

-- Tim

[caroline]

Re: Using weights

I don't recall that in any of these posts I did anything other than report what my experiences have been. I never asked for anyone's advice on this subject.

If no one is able to report their experience in this unknown area, there isn't much likelihood of any improvement in knowledge.

It seems that any discussion that doesn't go along with the established policy isn't particularly welcome.

What's the point anyway. Doctors want to be the experts and don't want any information from a patient that might challenge their ideas. It is all pretty pointless.

The medical establishment has pretty much classified me as an anomaly, which entitles them to disregard my medical history as irrelevant. Me and Christopher Reeve------ ;-]

[Reenie]

Re: Using weights

Caroline, nobody is attacking you. We understand your physiology is a little different than anyone here. However, the HCMA has to advocate guidelines that were drawn up by the most knowledgeable doctors available on the subject of HCM and physical activity. As stated before, any individual may choose to follow these guidelines or not as they see fit for their own lives. The point remains, though, that generally weight lifting is not advised by HCM specialists because of the potential for problems to develop, either immediately, or later in life. As we respect your decision to do what you feel you need to do, I think that equal respect needs to be given those who do follow the set guidelines.

We welcome discussion on all subjects related to HCM. There is no need to agree on all aspects of life, and certainly what works for one individual may not work for another. That said, current guidelines state that weight lifting should be avoided in HCM'ers.

Reenie

[Lisa Salberg]

Re: Using weights

Well hello everyone may I step in for a moment. First of all let me say that Caroline what ever works for you by all means do what you will. You are an adult, you know the risks of activies (from driving in a car to lifting weights), you have a wonderful thing called free will and you have had a lifetime of medical issues which have lead you to where you are today (which sounds like it is a pretty good place and not where some may have expected you to be when you were a young child). Also I would like to say that I believe that most doctors do want to learn from patients - at least our HCM doctors do. We are a team and we all (both sides dr and pt) need to remember that.

That being said let me get more general. When I reply to posts on this message board I do so in a general tone understanding that many people may read this board and not participate by posting. I always try to get clear messages out that are in line with the medical liturature. We often enter the area of conflict when discussing athletics - should kids with HCM play sports or not. I can tell you what the medical data says, what the experts say and what actually happens within a given family may not be the same as the medical advise. This also happens with medications, some medications should not be taken by those with HCM - but sometimes people do take them and have no problems (other times the result is deadly). When we (HCMA staff or moderators) state the postion of the HCMA and it is not exactly what a given person is doing it is not suggestive that we disagree with the persons choice it is a statement of what the litureture says and not a evaluation of an individuals life style.

At times we will agree to disagee with a person's position on an issue, that does not mean we are judging or being difficult but simply having a difference of opinion. Different opinions are helpful and will build our knowledge base.

Our role here is NOT to tell people how to live their lives but to share information, ideas and do so with an eye toward caution. We want people to LIVE with HCM, not in fear of it, not in spite of it but LIVE happy normal lives with HCM.

Thanks for sharing your thought!
Lisa

[alfman]

Re: Using weights

I truly believe weights are fine for patients with HCM. I am 28. diagnosed at ten. lifting since 16. I have set state powerlifting records but couldnt jog 1/2 a mile. If anything my thickening over the years has gone down. Every situation is different. I believe the benefits far outweigh the POTENTIAL negatives. Doctors are quick to be negative on something that sounds like it could be bad for you.

clay

[Reenie]

Re: Using weights

Clay, I have to respectfully disagree with your stance. Heavy weight lifting isn't fine for HCM patients. It's one of many burst activities that should be avoided. You're right, every situation is different. But you will hard pressed to get any cardiologist who is knowledgeable in HCM to agree that heavy weight training is good for an HCM heart. I do believe, however, that light weights to keep muscle tone are all right. Here is a link to an article that another member provided me which explains a little more about what activities are and are not considered good for people with HCM.

Reenie

http://www.guideline.gov/summary/sum...=1&doc_id=5592

PS: Thanks, Brownie.