Re: question exhertion Dr. Cheney and patients

[Guest guest]

He wants me to walk 10 to 20 minutes as tolerated QOD whatever that

means, must look it up, after I get going on various supplements and

treatments. Resting either lying down or sitting with feet up, which I

do anyway. Didn't discuss sex. I do little bits of housework and lie

down, at present, and am almost to the point of riding through the

store in one of those carts.

Standing in line messes me up and if someone comes along and wants to

talk, I am in big trouble, melting into the floor. Now that I know it's

stressing hell out of my heart, I won't be just standing there any

more. Also have a problem walking through a large store. Ten years ago

I could swim a bit, 50 meters, hang onto side for two minutes gasping

for air, up to eight widths, but I'm in much worse shape.

Finally realized that my efforts to exercise were making me crash with

what seemed like an odd kind of stomach flu. I wouldn't throw up but I

would wake up with the whirlies, my stomach would get weird and I

couldn't eat much so my weight was always dropping down in the 90s.

Talked about this with Cheney. I noted this hasn't happened for a while

and he thinks it's because I'm actually worse in terms of my heart

function, and I think he's right because I can't do as much physically

as I could in those days when I would push and crash with the " flu. "

Helen

> Anyone is going to Cheney talk, or Cheney patients, can you tell me

what he says regarding exertion for patients with the diastolic heart

failure? I know we have a low level anyway, but does he tell patients

to avoid exertion like small amounts of house cleaning, walking,

swimming, and what about sex? Thanks.

>

>

[Guest guest]

My memory is that he thinks CFS patients should attempt to push their boundaries

with exercise a bit but be careful of not going overboard. Exercise is actually

not contraindicated in heart failure. I know there are different kinds and

causes of heart failure but an paper I read indicated that unless the patient

was in the last most severe stage of heart failure then mild exercise was

helpful. There wasnt much research done on exercise and diastolic heart failure

however.

Theres more data overall on systolic heart failure. They've really just become

really aware of how common diastolic heart failure, in the last, I dont know, 10

years or so. The more they look for it the more they find it but it is found

more in the elderly. Thats my recollection anyway.

kdpart@... wrote:

Anyone is going to Cheney talk, or Cheney patients, can you tell me what he says

regarding exertion for patients with the diastolic heart failure? I know we

have a low level anyway, but does he tell patients to avoid exertion like small

amounts of house cleaning, walking, swimming, and what about sex? Thanks.

[Guest guest]

This article addresses exertion in diastolic heart failure:

http://www.chfpatients.com/faq/dhf.htm

It sounds to me like it's generally a bad idea in diastolic heart failure.

What does Cheney see as the benefits of mild exercise for DHF patients?

Peggy

[Guest guest]

All I got on this is a sheet of paper saying to walk ten to twenty

minutes a day as tolerated. I really can't walk very far without

getting my butt kicked, especially in this humidity, so I won't push

it.

He asked me how many hours a day I spent lying down or sitting with

my feet up. I figured about 22, which was pretty typical of his

patient population. That's 2 hours a day on my feet, all added up,

and sitting with my feet down. I am to maintain that ratio. This will

be pretty easy since I always sit with my feet up at home.

I generally do a few minutes of housework and then lie down. A round

of Tai Chi and then sit down. Now that I know I have a heart problem

I'm not pushing anything any more. If someone starts talking to me

while I'm outside I just sit down, I don't care where it is. Sitting

on the ground with my knees bent is better than sitting in a chair

anyway.

Sometimes I get to go for rides on our tandem. I sit in back with my

feet up and peddle a little now and then. That's a good form of

exercise for me, peddle two minutes, rest for twenty. I get to see

the beautiful bike path on someone else's muscle power and I help him

lose weight hauling me along.

Helen

> This article addresses exertion in diastolic heart failure:

> http://www.chfpatients.com/faq/dhf.htm

>

> It sounds to me like it's generally a bad idea in diastolic heart

failure.

> What does Cheney see as the benefits of mild exercise for DHF

patients?

>

> Peggy

[Guest guest]

I used to get sick a lot when I was working. It felt like flu but who

gets flu eight times in one year, as I did in 98, the last year I

worked? I was real puzzled by it but I'm not now.

My flu attacks generally involved my digestion but I wouldn't

actually vomit, although I would feel nauseated for weeks on end.

Those attacks fit perfectly into Cheney's theory about loss of

circulation hitting the digestion and he confirmed that last week.

As for the emotional stressor theory, I've had an extreme amount

since I quit working, but I still don't get the " flu " much any more.

That's because I sleep more and don't do much of anything but read.

Had a mini-crash in February that briefly involved my stomach because

I was taking a Tai Chi class and standing too long. These attacks

always feel like a virus coming on but then they aren't. They are

CFIDS relapses brought on by over-exertion.

Helen

> > Anyone is going to Cheney talk, or Cheney patients, can you

tell me

> what he says regarding exertion for patients with the diastolic

heart

> failure? I know we have a low level anyway, but does he tell

patients

> to avoid exertion like small amounts of house cleaning, walking,

> swimming, and what about sex? Thanks.

> >

> >

[Guest guest]

>The truth is, as I can see from having eventually gotten home health

care, that I do less since I don't have to, and thus I have less

symptoms and am not always crashing.

That's true for me, too. I've been able to hire help a couple times

for a few months each time. It helped my function level more than

almost anything else I've done. Function dropped again when I was

back on my own.

-Lynn

[Guest guest]

hi Adrienne:

I would get those if I actually had the flu but that is rare.

Sometimes I get allergy attacks/ sinus infections, but the vast

majority of my " illnesses " over the years have followed this pattern:

It starts either with belching attacks or I wake up in the morning

and the ceiling is spinning. I feel like I'm going to vomit but never

do. I get a low grade fever, never more than 99.8. Get real weak.

Everything I eat sits like lead in my stomach so I don't eat much,

protein powder, pureed food.

This used to happen all the time when I was working. I was sick more

often than not and could rarely crack 100 lbs due to recurrent

illness. Now it hardly ever happens.

Cheney thinks I've progressed in my disease because my stomach

doesn't get whacked now if I overexert. Last Halloween

was speaking here and in this town Halloween is a huge event. You

cannot park anywhere near the university. So I wanted to go and was

home alone, so no way to even get dropped off nearby.

I decided to walk and sat down three times to rest on the way there,

about 3/4 of a mile away, hilly terrain. While there I finangled a

seat on a sawhorse where I sat for two hours but with my legs down.

On the way back I sat down seven times to rest but it did me no good.

I was trashed.

My stomach didn't blow out from it but on election day, I vote about

200 yards from my house, if that much, a serious hill on the way

back. I had to sit down, lurch a few steps, sit down again, over and

over, to get up that hill. I was trashed for a long time.

Ten years ago I could have walked uptown without stopping and it

would clean my clock but nothing like this. So I am worse but I don't

go into the stomach stuff. Cheney thought that was indicative of the

heart failure progressing somehow, I told him this same story.

Helen

> > > Anyone is going to Cheney talk, or Cheney patients, can you

> tell me

> > what he says regarding exertion for patients with the

diastolic

> heart

> > failure? I know we have a low level anyway, but does he tell

> patients

> > to avoid exertion like small amounts of house cleaning,

walking,

> > swimming, and what about sex? Thanks.

> > >

> > >

[Guest guest]

The article I cited before does mention exercise.

From: http://www.chfpatients.com/faq/dhf.htm:

<<Exercise in a healthy person makes the heart relax more quickly and lowers

LV pressure faster. The heart muscle actually stretches and gets larger when

full of blood just before pumping it out. This increases EF. In a healthy

person, these actions help the body handle exercise.

     In DHF, those actions are very limited. The heart's stiffness prevents

it from stretching to increase its size when filled with blood. EF does not

rise, and patients get short of breath and very tired. Often, there is quite a

rise in blood pressure and heart rate during exercise. The rise in blood

pressure makes the heart work harder, which screws up the entire pumping cycle.

     These changes increase diastolic pressures. High diastolic pressures

reduce lung function and make breathing harder. Low heart output during exercise

causes fatigue in the legs and other muscles.

>>

What is important to note is that diastolic heart failure is DIFFERENT from

congestive heart failure, and often what is good for one is bad for the other.

So following prescriptions for " heart failure " (usually referring to

congestive heart failure) or " congestive heart failure " is not necessarily a

good idea

for diastolic heart failure.

Also, even without CFIDS, diastolic heart failure patients have a better

prognosis.

Peggy

[Guest guest]

Cort:

Great idea. I will do that. Will take me a while, since my problems

date back to 1978. Actually I have some of it written up already for

my acupuncturist and there's gonna be a new chapter as I try out

Cheney's new treatment in the coming year.

Right now I got a husband with a badly broken arm so we are waiting

for an appt with an orthopedic surgeon. Maybe it will be set next

week. It's no wonder I drive eight hours to see a specialist, this

town has the most pathetic medical care.

But I will get to writing my story when I can, sounds like a good

idea. No one in my life has ever really wanted to hear it, so it will

be a change to have people actually be interested. I've had a lot of

the " it's all in your head " bs slung at me. Now I can say, no, it's

all in my heart and has been for decades.

In the meantime I won't be going for any more long walks, that's for

sure!

Helen

> > > > Anyone is going to Cheney talk, or Cheney patients, can

you

> > tell me

> > > what he says regarding exertion for patients with the

> diastolic

> > heart

> > > failure? I know we have a low level anyway, but does he

tell

> > patients

> > > to avoid exertion like small amounts of house cleaning,

> walking,

> > > swimming, and what about sex? Thanks.

> > > >

> > > >