Fatigue and exercise

[Darren1]

Re: Fatigue and exercise

Thanks everyone! It's scary to hear how much HCM impacts us all but at the same time refreshing to see how well everyone is dealing with it. I especially love to hear HCM'ers encouraging each other to stay active! Thanks for all the feedback!

[lovebird]

Re: Fatigue and exercise

well said Jill. I was a nurse for 10 years. as a new graduate I took the stairs up to my ward. by year 3 I was lift only then slowly I was reducing my hours.

[JillC]

Re: Fatigue and exercise

I don't know if you can use HCM and control in the same paragraph LOL.
I was a nurse for over 35 years... Used to walk all day long at the hospital. Gradually over the years I took less active jobs with only mild walking and lots of computer work. I didn't 't even realize how bad my exercise tolerance had become until I was walking from the hospital to the parking lot with a friend and I realized I couldn't walk and talk at the same time.
It has only been the last month, since myectomy #2 , out of the whole 8 years I've been properly diagnosed that I feel like I can predict( most days anyway) a steady amount of energy. If I walk 4 days in a row...I often then take 2 days off because I just don't have it in me to push on. I still have trouble allowing myself to have ups and downs and not feeling guilty or lazy.
But even after stellar surgery at a COE, The obstruction is removed but the rest of my heart still has HCM.
It is a struggle, do the best you can do. Celebrate the good days and don't beat yourself up on the bad days.
HCM is the ultimate teacher in flexability.

[rowland2010]

Re: Fatigue and exercise

Jill
Like me you seem to be setting yourself realistic aims and no one knows their bodys like one self,just walking is exercise also walking around a supermarket and carrying shopping bags etc it all adds up by the end of the day.
I have always had physical jobs and am self employed albeit on a vastly reduced working day on advice from my doctor and the fact i can no longer do my kind of work for any extended length of time,like you say every day is not the same for instance i was doing some gardening for pay a small garden and whilst doing some light digging suddenly went totally breathless it felt like my heart was going to burst and it was all i could do to find my way to the nearest chair and spent the next 10 mins panting needless to say i finished their and then luckily my client understands and i will finish the job later,while i am pushing it you seem to really be in control and the droping weight and eating sensibly are things i struggle with continually, anyway all the best Dave.

[rowland2010]

Re: Fatigue and exercise

Jill
Like me you seem to be setting yourself realistic aims and no one knows their bodys like one self,just walking is exercise also walking around a supermarket and carrying shopping bags etc it all adds up by the end of the day.
I have always had physical jobs and am self employed albeit on a vastly reduced working day on advice from my doctor and the fact i can no longer do my kind of work for any extended length of time,like you say every day is not the same for instance i was doing some gardening for pay a small garden and whilst doing some light digging suddenly went totally breathless it felt like my heart was going to burst and it was all i could do to find my way to the nearest chair and spent the next 10 mins panting needless to say i finished their and then luckily my client understands and i will finish the job later,while i am pushing it you seem to really be in control and the droping weight and eating sensibly are things i struggle with continually, anyway all the best Dave.

[JillC]

Re: Fatigue and exercise

Re...HCM, exercise, weight. It is important to get moving if one is sedentary....It is also important to understand ones own disease process and limits...in the past I have had MDs tell me " just lose some weight, you will be fine" when I was so fatigued and short of breath I could barely do basic household chores....that was my exercise. Even in the past year when I saw an excercise physiologist after my first myectomy.....he was very cordial, gave me some reality based expectations....but I still felt he had no concept that I could walk 30 minutes one day and be bedridden the next......His experience was not with HCM but with CHF and CAD which may not be a better disease to have but have a bit more predictability.
Now, since I had my myectomy redone at a center of excellence....I can walk 30-40 minutes 5 days a week and I've dropped 10 pounds. My goal is to maintain at least my current walking regimen and add in some swimming on the days I don't walk I also count an hour and 1/2 walking a grocery store and putting away 8 bags of groceries as a "walking day" because on that type of day that is all that I can handle. I eat healthy, I do not over eat and it would be nice to drop some more weight.....but I keep walking as the goal as I gained a lot of my weight by going on restrictive diet plans in the past. I am realistic that I have no desire to be an athlete of any kind.
These goals may sound small but they are perfect for me....and may be realistic goals for other HCMers too.


FYI...if this thread double posts you can go back in and delete one of your posts

[rowland2010]

Re: Fatigue and exercise

Darren
i'm sorry i seem to have hijacked your thread,on the subject you started with i think its very encouraging that despite your hcm you seem to be keeping fit which my doctor keeps telling me is very important in hcm sufferers,keeping fit seems to go hand in hand with weight control which i'm told can drastically improve hcm symptoms although most sufferers could not possibly get close to your fitness regime knowing ones tolerences fitness wise must only help with regards to sufferers health and wellbeing.all the best Dave.

[rowland2010]

Re: Fatigue and exercise

Darren
i'm sorry i seem to have hijacked your thread,on the subject you started with i think its very encouraging that despite your hcm you seem to be keeping fit which my doctor keeps telling me is very important in hcm sufferers,keeping fit seems to go hand in hand with weight control which i'm told can drastically improve hcm symptoms although most sufferers could not possibly get close to your fitness regime knowing ones tolerences fitness wise must only help with regards to sufferers health and wellbeing.all the best Dave.

[Darren1]

Re: Fatigue and exercise

Managed govt. health care *sigh*. Sorry to hear about your difficulties and fearful we may end up with similar issues here in the States.

[mbcube]

Re: Fatigue and exercise

Ah yes, NHS - "Accident & emergency at my local hospital is free" That is, if you survive.
Check with local associations and charities for assistance. Also - Most hospitals (in the US) have Social Workers who are trained to find those resources, check in with them.
Wondering if the Beta Blocker manufacturer has an assistance program. What I'm getting at is, wishing you didn't have to struggle and hoping for a solution soon!

[mbcube]

Re: Fatigue and exercise

Ah yes, NHS - "Accident & emergency at my local hospital is free" That is, if you survive.
Check with local associations and charities for assistance. Also - Most hospitals (in the US) have Social Workers who are trained to find those resources, check in with them.
Wondering if the Beta Blocker manufacturer has an assistance program. What I'm getting at is, wishing you didn't have to stubble and hoping for a solution soon!

[rowland2010]

Re: Fatigue and exercise

Gordon,Jill
Your quite right i am taking a risk i do get it about cutting up meds perhaps not such a great idea but seeing a doctor over here involves the National health service and i am not booked in to see my Cardiologist until a week before Xmas ,also their is the cost i have to pay for every prescribed med i use, i am on minimum wage and it is over £8 a item thats nearly $14 US dollars ,cutting them up saves money and if anything goes wrong at least Accident & emergency at my local hospital is free. Dave

[JillC]

Re: Fatigue and exercise

Dave,
I personally have a lot of trouble with fatigue and beta blockers and at this time I only take a calcium channel blocker. HOWEVER,
experimenting on your own changing drug dosages without MD supervision is not a good idea.
There is a protocol for weaning off beta blockers that prevents rebound arrhythmias...Please talk to your cardiologist.
He may have another medication in mind for you.
Also, though after meal symptoms are common in HCM , they will be worse if you are not properly medicated to to decrease the stiffness in your left ventricle. So even if your experiment seems to be helping one symptom it could be increasing other symptoms. Please check in with your cardiologist for your own safety.

[gfox42]

Re: Fatigue and exercise

Rowland2010, I hope you're doing this in consultation with your doctor. If experimentation with dosage is needed, doesn't it seem wise to have your doc weighing in on how much of a dose will still be effective, and on how long you should wait before trying a different dose? The other reason to consult may or may not apply here - some pills aren't meant to be cut up, and half a pill won't be the same as the same pill made with half the dose.

Gordon

[gfox42]

Re: Fatigue and exercise

Rowland2010, I hope you're doing this in consultation with your doctor. If experimentation with dosage is needed, doesn't it seem wise to have your doc weighing in on how much of a dose will still be effective, and on how long you should wait before trying a different dose? The other reason to consult may or may not apply here - some pills aren't meant to be cut up, and half a pill won't be the same as the same pill made with half the dose.

Gordon