HCM an d Fitness

[marvwaschke]

I think fitness for us with HCM is important and it is something we can control for ourselves. I see it this way: HCM limits the capacity of our hearts. The limit is determined by the idiosyncracy of the disease in each of us, but we all know more about that limit than we would like when we are hit by chest pain, shortness of breath, light headedness, the list goes on as we know from experience. We take drugs, have implants and undergo surgeries to avoid the symptoms.

But I believe fitness is another way to push away those limits so we can live more normal, productive, and satisfying lives. We can't do much to strengthen our sick hearts, but we can increase our lung capacities and tone our muscles. I believe the more fit we are, the less our hearts have to work.

But we have to be so careful. No marathons for us! No sweat drenched sessions at the gym, no aerobics to a pounding beat, maybe not even a brisk walk or even a leisurely stroll for some of us. But I think that by increasing general muscle tone, each one of us can take a step forward and perhaps move from a symptom-free leisurely stroll around the block to a symptom-free brisk walk around the lake.

The question is how to do it safely? Without risking the specter of sudden death that haunts us and our loved ones.

I would like to discuss this in this thread. To start, am I right? Or just hooting in the wind. I'd like to hear both from experts and non-experts with personal experience.

All other questions are irrelevant, if fitness does matter. But if it does matter, what works, what doesn't? How do you know when you are pushing it too hard?

And finally, I would love to hear some success stories. And, failures are important too.
Regards,
Marv

[Lisa Salberg]

Re: HCM an d Fitness

GREAT point Marv!
I'll start - There are days when walking across a room seems like a large task - thankfully these are few and far between. Most days are "good" some are "great" (again few and far between).
I find that when I am inactive for long periods -no walking, shopping or movement I feel really bad. If I can at least WALK I feel better.

Last year in January I was really sick - non HCM related (or was it) I got hit with bronchitis (so severe I ended up in the ER) - I felt terrible. It took me several months to get back to 'normal'. I took a good long look at how I was treating my body, not just my heart, but the whole deal. I made some big time changes! I am now on a modified Atkins diet with a touch of "south beach"- basicly NOTHING WHITE TO EAT no rice, bread, pasta - mostly high protien (mostly fish, chicken and turkey) lots of green veggies (keeping carbs under 30grams perday) - no suger- and I am taking a good mix of mutli vitamins. On top of this I WALK 20-30 minutes at least 3 times per week.

What has this done for me?? - for the 1st time in my life I have lost weight - 10 pounds so far. I feel really good nearly every day and over all I am happier with the way I feel.

Are there days when my heart bothers me, heck yeh, but that is going to happen anyway - its been doing that since I was 12 years old it aint gonna stop now! I have found that my meals are smaller now and it takes less to fill me. Last night I went out for "Sushi" - I kept it simple and just had sashimi (just plain fish for those non-sushi eaters!) I was full on 1/4 of what I use to eat.

Now for all of you who say - 'thats nice ..but I cant do it' let me tell you some other things -
I think that the diet changes I made were easy (the first 4-5 days were the hardest). You will need to be creative in meal preparation but it is not that hard!

My family is eating healthier and as a mom this makes me happy!

BEST OF ALL I have yet to get sick this winter - not even a cold! This from the person who has been sick every 6-8 weeks for the past 4 years - NO JOKE.

Yes, walking is important, eating well is important and keeping a good frame of mind is key to keeping it all together!

Thats my take on it!

Lisa

[liona]

Re: HCM an d Fitness

First, Lisa, you are keeping carbs under 30 per day? Isn't that a bit much? Sticking to 30 carbs per meal would be rather stringent---- I'm going to diabetes counseling, and they feel strongly that I must get 30% of my calories from carbs----are you counting all carbs, the carbs in fruit and carrots, or are you only speaking about the white badies?

I had an ablation last May, and I am now finding that I can actually increase my cardio-vascular endurance for the first time in decades. I'm 57 now. I continue to lift weights, as I have for 25 years, and now I'm doing 50 minutes eliptical and 25 minutes on the exercise bike, then 30 min weights and 20 minutes abs and stretching. I do this routine 3 times a week at my gym and then go home and rest up for the next session. I don't do the cardio at a very high speed, but I just stick to it and preservere------

My cardiologists think I press myself too much, but I am convinced that my endless dedication to exercise, even when it wasn't going very well, is why I am alive today, along with a little help from the medical profession. Each well developed muscle in your body assists your heart in moving that blood around!

Of course, since I am diabetic and on insulin injections, I have no choice but to be careful about my diet---- Not much room for slip-ups when the consequences are so punishing!!!! No one who is acquainted with me has any idea that I have HCM, diabetes and a tethered spinal cord. They think I am pretty well preserved for a normal woman in her late fifties, even without any special problems!!!

[Lisa Salberg]

Re: HCM an d Fitness

I am keeping the carbs low for a few more weeks... I want to drop a few more pounds... Then I will slowly kick them up.
Lisa

[Burton Borrok]

Re: HCM an d Fitness

Hi Marv,
As of now if I do anything more then walk at a slow pace, for limited distances, I start to get into trouble. Late last December I got into trouble after eating dinner in a restaurant. I wound up in the hospital with an HOCM attack. The cardiologist (he’s now my new doc) after all these years finally diagnosed the problem correctly, and made many changes to my meds, increasing some and deleting others. After a couple of weeks out of the hospital he had another echo run, and told me there was a vast improvement in my echo as compared to the one done in the hospital.

He now wants me to get into the best condition I can sustain. He has enrolled me in a cardiac rehab program at the local hospital. It’s a twelve week course, three sessions a week. I go Feb. 3rd for an indoctrination session, so I hope to know more after that.

I had Cardiac Rehab back in 1985, after my first angioplasty, and can describe what the program was like at that time. When you first came in they hooked you up to an EKG transmitter. You then stretched and loosened up. This was followed by a workout on a treadmill, while you were monitored closely. When a ‘shift’ was noted, you were ordered to cool down and then stop. Unfortunately I was ‘graduated’ after only achieving very limited activity – 4 mph / 2 degrees elevation, or 2 mph / 4 degrees elevation. I was very disappointed because there were people there recovering from open heart surgery that were running up mountains. When I questioned them I was told that we each have our own limitations. (I had not been diagnosed with HCM at that time.)

The point I’m trying to make is; if you could qualify for a cardiac rehab program at your local hospital, it would be a great way to build yourself up without running the risk of overexertion and the consequences that might follow. Also, if a problem does arise, what better place to be in then the cardiac department of a hospital? You could ask your cardiologist what he thinks of the idea, and if your insurance would cover it.

I also take a multiple vitamin / mineral supplement, plus extra vitamins ‘A’ & ‘E’, a five grain aspirin, and drugs for my other conditions. (I sometimes quip that if I took my pills and turned too quickly, I would rattle.)

I hope that this possible approach may be of help to somebody. At least it’s a thought.
Burt

[Burton Borrok]

Re: HCM an d Fitness

PS – I’m also a diabetic on Insulin and Glyburide, and I’m hyperlipidemic, and a number of other things. My dietitian had her hands full coming up with compromises to cover all these conditions. I follow the diet as best I can.
Burt

[Toogoofy317]

Re: HCM an d Fitness

Wow! 4mph 2%grade. I have been in cardiac rehab for about a year and could never make it to 4 and I'm only 23. And I am definately an active person. Let's just say I don't know when to quit sometimes.Just goes to show that we are all different. Also, when you go to cardiac rehab make sure the nurses know your specific problem. It is probably best that your specialist if you have one write the prescription and make sure they have your maximum heart rate.

Mary S.

[Burton Borrok]

Re: HCM an d Fitness

Mary,
Don't forget, this was in 1985. (Going on 19 years ago.) I'm very interested to see how far I can get now-a-days.
Burt

[marvwaschke]

Re: HCM an d Fitness

Burt-- It is no surprise to me that you had symptoms after eating in a restaurant. I have had to relinquish a long standing habit of eating a small breakfast, a large dinner, and skipping lunch. Last summer I started getting light headed and palpitations almost every evening after dinner. My cardio suggested (ordered me) to start eating five small meals a day. This has worked much better. Apparently my heart can't pump the volume of blood required to digest a large meal. We changed my meds at the same time, but my gut tells me that the small meals caused the improvement, not the meds.

I asked my cardio about cardiac rehab classes and after talking about it, we decided that would not be a good idea for me. His concern was this: he knows all the nurses and physical therapists that run the cardiac rehab classes in our area, and although they are very good, he is sure that none of them are familiar with HCM. He does not think they would be good coaches for me. According to him, my goal should be to avoid the kind of aerobic exercise that taxes my heart and concentrate on mild exercises that will increase overall fitness.

The cardio-rehab classes aim to gradually increase aerobic capacity. My cardio does not expect my aerobic capacity to increase. He does not want me to risk being pushed in aerobics by the well-meaning nurses and therapists, so we decided I would be better off with self-directed exercise, which consists of easy bicycling, some pilates style stretches and very easy 'crunches.' On my bike, I can increase distances as I feel up to it, but not speed. I am supposed to keep the floor exercises rediculously easy.

My cardio is not an HCM specialist, but so far, as a team, we have been successful.
Marv

[Burton Borrok]

Re: HCM an d Fitness

Hi Marv,
Thanks for your info. As it turns out it’s not too far from what I was told. My major problems are; Hyperlipidemic, Cardiac, Renal, Diabetic, and now HCM. I had my fourth heart cath last May, my renal arteries angioplastied in July, and my Iliac angioplastied in August. I’ve got plaque build-up throughout my body (stenosis) and the blood flow to my legs is impaired. There are quite a few other related problems, such as a short lived stroke in June (effects lasted only about three days), and an HOCM attack in December.

I had a long fruitful conversation with the cardiac rehab orientation nurse. To start with she said my going on a treadmill or an exercise bike was an unrealistic goal. My goal should be to walk leisurely for ten minutes, then sit and relax for a period of time, working up to three repetitions of this regimen. If at any time I start to get SOB or a tightening of the chest, I should sit down and relax, discontinuing the exercise for the day. We agreed that I could manage this on my own, and going into the hospital program for me would be a waste of money.

After the meeting, my wife and I went to the local mall. I walked for six minutes, then rested – I felt good. I then walked back to the car, and that wasn’t near as easy, but at least I felt I had done something. Thursday I brought my car in for repairs. There was a McDonald’s a long block away and I wanted breakfast, so I decided to walk it. It was a bit blustery, but off I went. I pushed just a bit and made it there in 12 minutes. I sat, rested and had breakfast. The walk back took 15 minutes and I was SOB, tight of chest, and a bit rubber legged. Today is Saturday and my legs still haven’t fully recovered. I think I will take the guidelines a bit more seriously from here on.

I used to skip breakfast, eat a normal lunch, and a big dinner. The diabetes put a stop to that. Each of my major ailments required its own diet (according to that specialist,) and each of the diets was in conflict with the others. I finally went to a dietitian where I laid out all my diagnoses, along with my own food likes and dislikes. Together we worked out a diet I could live with. I don’t always follow it, but I try to stay as close as I can. Yes, there are lots and lots of vegetables and fruits, a deep reduction of red meats, and only six ounces of Proteins a day. Well, if you take milk (skimmed) with your cereal, that doesn’t leave a whole lot for the rest of the day. Carbs should also be limited as much as is realistic, but you do have to eat something. Salt and salt substitutes are out, but thankfully, spices are in.

I saw a new nephrologist about a week ago, and this clown is not to be believed. He started giving me his diet, and I almost had to jump on him to tell him that I had a dietitian work out a diet for me that takes all my problems into consideration. I had not mentioned word one of what the diet consisted of, but he said he didn’t like dietitians, and I should follow his diet instead. He returned to lecturing me on his diet, and I was getting hot. I asked if there was any way I could stop him, and he said no. I then told him to let me know when he had finished so we could talk again – and even that didn’t stop him. He went through his entire presentation, and then forced his written plan on me. Obviously I will follow the dietitians plan, but this is the fourth nephrologist I’ve tried in this town, and I’ll probably have to stick with him. I’ll just have to be diligent in my homework. Of course if he harps on his diet to the detriment of the treatment of my kidneys, I’ll have to go to another doctor. So far, it’s hard to tell which of them is the worst one of the bunch.

So that’s where I am now. I’m 71, and still plugging along. Please be a little cautious with your own exercise plan. The down side stinks.
Burt

[mtlieb]

Re: HCM and Fitness

Hi All,

I've been reading this thread with great interest, and i have a question or two about cardiac rehab.

I have to admit that fear, more than anything, has kept me from getting into any sort of intense exercise program. I'm sure that's probably true of everyone when they are first diagnosed with HCM. Trying to figure out how much you can safely push your body and not kill yourself can get a little tricky.

During my visit to the NEMC, they decided not to perform the scheduled stress test, because when my gradient was found to be so high at rest, the doctors felt that it was unsafe to provoke it further. This, more than anything i guess, is what's bothering me. How comfortable can i be with any sort of intense exercise regimen, when my doctors wouldn't even allow me to step on a treadmill, in a hospital, surrounded by cardiac specialists? The sudden-death issue is still a bit scary for me as well, since nobody seems to be able to give me a straight answer on that one.

Do you think cardiac rehab might be a viable option for getting back onto a regular exercise program safely? I'd always thought it was reserved only for persons who have had surgery? I researched my health insurance, and it appears to be covered under my policy. Thanks for any info you can provide.

Jim

[nirvana]

Re: HCM an d Fitness

I'd always thought it was reserved only for persons who have had surgery?
Jim

Jim, there is this cardiac rehab program here in town which lasts about 6 weeks. Once those 6 weeks are over, the patients can sign up for a maintenance program that enables them to continue excercising three times a week under a plan and supervision of a RN. They also have a Defib available handy. This maintenance program is open to everybody, not just post-surgical patients, though a cardiologist needs to refer you. I am planning to sign up for the maintenance program. It costs about 75 bucks a month and is not covered by insurance (for me).

Cheers.

[Burton Borrok]

Re: HCM an d Fitness

Jim,

I believe you have to be referred by your doctor to get into a Cardiac Rehab Program. On my insurance, it has to be within a year of some sort of cardiac procedure. (With me it was the heart cath – angioplasty.) Obviously I don’t know the requirements with your insurance, or Cardiac Rehab center. I have a great deal of confidence in the hospital I now use (my third since the seven admittances starting last May.) Their rehab program, under usual circumstances, would be great since they hook you up to a cardiac transmitter and closely monitor the effects of the exercise on your heart, and are trained in cardiac exercising.

Unfortunately in my case, my activity would be limited to a slow stroll, working up to three 10 minute repetitions, with rests between. I can’t see paying a co-pay of $20 per session – three sessions per week for twelve weeks for that, when I can do it safely on my own. That doesn’t change the fact however, that for most people it is the safest way to get into the best physical shape they can achieve.

Talk it over with your cardiologist and see what he thinks. I think your right on two counts. First, to want to build yourself up as much as possible, and second not running off half cocked and possibly putting your life on the line. From your postings I think you have a darn good doctor in your corner that is totally familiar with your case. See what he thinks of the Rehab approach. Good luck, good buddy. I’ll be looking for your future posts.

Burt
PS – Where do you go to get all this rum and fruit cake? I can’t have either, but I’d sure like to at least smell it.

[mtlieb]

Re: HCM an d Fitness

Hi All,

Burton and Nirvana... thanks for your responses. They were very helpful.

And Burton... i'm sorry i can't help ya out with the fruitcake dilemma. I was only ever interested in the Rum to begin with... the fruitcake was merely the transportation mechanism to deliver it

My insurance policy reads that benefits for Cardiac Rehabilitation Therapy are covered as long as they are 'expected to make measurable and sustainable improvement in the level of functioning within a reasonable period of time from initial diagnosis'. There is no mention of surgery, but i might have missed the boat anyway since i was diagnosed almost a year ago. The maximum benefit is sixty days per calendar year. It does not list any copay, but if there is any, i believe it would be 5.00 per visit as listed under my preventative care agreement.

I will, of course, have to follow-up with my insurance company to find out the exact details, and schedule an appointment with my cardiologist. I do like my new cardiologist very much, and he seems very knowledgable about HCM. My only problem with him as that he doesn't like to return my calls very much, and that he only wants to see me every six months. Given that i am currently trying to bring down a very large gradient with medication, i think six months is a little bit long to wait between visits.

I'm not scheduled to see him again until late April, but given some of the problems i've been having lately... i'll call him tomorrow and try to get an appointment sooner.

Thanks again for all your help,

Jim

[Burton Borrok]

Re: HCM an d Fitness

Hi Jim,

Another tip. I found it very helpful, especially with doctors who are allergic to the phone (to busy to call back) and whose staff usually abbreviates all messages to insensibility, to send a Fax instead of calling. I can send it from my PC, explain the situation, and give him a ‘head’s up’ to my wanting to see him. I close with a request for him to ask the staff to call me to set up an appointment. If I don’t hear from the appointment clerk in a reasonable time, I call them, explain that I sent the doctor a Fax, and ask for an appointment. (If that doesn’t work I begin to think the doctor is too remote to be of help. – It usually works fine though.)

Under my insurance, Rehab is considered a specialist visit and instead of ten it’s twenty bucks a visit. Your insurance sounds much better, but I’d check to make sure of the costs before committing to anything. When I went in for my fourth heart cath I was released too soon and returned the next morning for another three days. I was again released too soon and wound up in another hospital for three more days, followed by two days in an after-care facility. The bill for the first hospital still came to $96,000. I’ll have to be in this insurance plan for a little over another century before they reach break-even with me, just on the costs I’ve run up in 2003.

Burt
PS If they make a tin whistle out of tin, what do they make a fog horn out of?