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Re: Re Sandy et al

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Good words of wisdom to live by. I performed at a restaurant during

my " infection " last week for a murder mystery gig; my mind was so

focused on my acting, I hardly coughed, let along spit up nasty stuff!

Mind over matter when it counts!

Thanks, Tolly.

Janet

>

> Sandy said something very important that I want to stress.

> People with bronc can and should try to lead a normal life. Some are

> discouraged by cough and sputum, but they can be suppressed for

short

> periods.

>

> We go out to eat, meet friends, go to the theatre and concerts. I

> carry cough drops with me and try to use my inhaler before we leave.

>

> In other words don't let the disease govern your life.

>

> Tolly

>

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Hi,

Bronchiectasis has infered with my every day life. At work, I'd be in

the washroom doing percussion and coughing at the same time. I

returned to my desk and the boss would ask me why I haven't been at

the desk. I'd be away 2 or 3 times for 10 minutes ea. during the day.

Not acceptable in the businessworld. I was working for a compressed

gas company. One of my duties was to take orders for and oxygen, dry

ice etc. for out of town hospitals. Many times we missed an order

because of me. When their tank gets too low, no surgery can be performed.

Doing percussion in the morning before work didn't do the trick. Also

visiting with friends can be embarrassing, especially when I have to

call a cab and go to the nearest hospital because of coughing up blood.

Too many things to mention here, how we cope all depends on the

severity of the condition.

the cough cannot be suppressed as we age. I have done that and ended

up SOB or pain in the lowere l. lobe.

karin

>

> Sandy said something very important that I want to stress.

> People with bronc can and should try to lead a normal life. Some are

> discouraged by cough and sputum, but they can be suppressed for short

> periods.

>

> We go out to eat, meet friends, go to the theatre and concerts. I

> carry cough drops with me and try to use my inhaler before we leave.

>

> In other words don't let the disease govern your life.

>

> Tolly

>

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Karin- I am sorry that you are having so much trouble. But one part

of your post is worrisome, namely that you are at times coughing up

blood and have to go to the hospital.

You really need to be evaluated by a competent pulmonologist as to

what causes the bleeding. Perhaps you have already done so, perhaps

you are on blood thinners because of other conditions. I have atrial

fibrilation and the coumadin dose I take is critical. Once when it

was at the upper limit I had a pulmonary hemmorage. Certainly if you

are bleeding it will worsen your cough. I am not sure there is

correlation with age - I am 81.

Last thought, if your current medical people can't identify the

cause, you might want to get a second opinion.

Tolly

>

> Doing percussion in the morning before work didn't do the trick.

Also

> visiting with friends can be embarrassing, especially when I have

to

> call a cab and go to the nearest hospital because of coughing up

blood.

>

> Too many things to mention here, how we cope all depends on the

> severity of the condition.

>

> the cough cannot be suppressed as we age. I have done that and

ended

> up SOB or pain in the lowere l. lobe.

>

> karin

>

>

>

>

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Very true, but standing in a crowded bus or subway, not exactly a

pleasant thing to do.

My lungs co-operate most times. I have to cough up phlegm between 2pm

and 7pm. I try to be at home during those hours. I was dx'd with B.

42 years ago. Things were easier then. It's been in the last 5 years

that I experience pain when I try to supress the cough until a later

more convenient time. The pain I was told is progression of the B.

karin

>

>

>

> In a message dated 10/29/2006 5:13:34 P.M. Eastern Standard Time,

> karin_44@... writes:

>

> the cough cannot be suppressed as we age. I have done that and ended

> up SOB or pain in the lowere l. lobe.

>

> karin

>

>

>

> I would think, as much as we'd like to suppress our cough, it's a good

> thing. The coughing expels that mucous in our lungs that plugs us

up..and of

> course, if we're plugged up we can't breathe, right? So, as

inconvenient, as

> embarrassing as it is..it's bittersweet ..and necessary.

> Sandie in MD

>

>

> Never Look Down on Someone

> Unless You're Gonna Help Them Up

>

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Sandie from MD

I have gone out for the day to run some errands. Feeling quite well

in the morning. Suddenly during the day I feel very, very tired. I

find a coffeeshop, have a nice coffee. I am starting to feel worse.

I need to cough up phlegm and head for the closest washroom. I cough

up ugly looking stuff, have a sore throat and hoarse chest with fever.

All this within 2 or 3 hours. I call a friend to drive me home as I

can barely stand up because of feeling weak and tired.

I always have a fresh supply of antibiotics with me. I take one

immediately. Otherwise the next stage would be more pain in the lower

l. lung and more ugly looking sputum or pneumonia.

It's useless to then deliver sputum to the lab after taking my first

antibiotic.

So far I have never had a mycobacteria in my lungs.

karin

>

>

>

> In a message dated 10/30/2006 12:49:07 P.M. Eastern Standard Time,

> maryholt12@... writes:

>

> Often my doctors prefer not to start off

> with antibiotics immediately during a cold. My

> infectious disease specialist only wants me on them if

> I develop a secondary bacterial infection.

> Resting/sleep and staying hydrated is one of the most

> important things you can do to prevent becoming run

> down. Watch for your typical signs of infection for

> example do you get high fevers with your bacterial

> lung infections? Not everyone does, so you need to go

> on your typical signs, and if something does not seem

> right see your doctor.

>

>

>

> We have to remember my disorder is different from a lot of you others

> because I'm A1ATD complicated w/bronchiactasis. I agree we need to

learn our own

> body signs. After 7 years of this mess I've learned mine. And my Dr

trusts me

> enough, after 7 years, to know my body and the signs of a recurring

flare up.

> That said, I always have a supply of antibiotics on hand. My Dr isnt

always

> available, then if it's the weekend that's even a worse scene..some

pharmacies

> are closed..etc. It only takes a matter of less than 24 hours for me

to go

> from walking to lying totally withered..in pain..high fever. From

that point I

> could develop pneumonia w/in another 24 -48 hours. This is why I

say..know

> your own body..at the first sign of sputum color change..move

fast..use that

> antibiotic asap..dont wait for it to turn green..don't wait till

you've got a

> fever and can't walk 10 feet..learn your body is the best advice I

can give

> you.

> Sandie in MD

>

>

> Never Look Down on Someone

> Unless You're Gonna Help Them Up

>

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Hello Sandie,

I haven't a clue why I only get the urge to cough up phlegm, sputum or

whatever in the afternoon. Early afternoon if it's damp, smoggy

outside. Sometimes very late in the af or early eve when the weather

is sunny, dry. No kidding, been like this for app. 20 years.

I have had several surgeries (not lung), the percussion team show up

at my bedside at 7, 8 or 9 am to work at my lungs. I tell them don't

bother, nothing will come up. They tell me, *we have lots of

experience with bronchiectasis patients and it's in the morning you

have to cough up sputum* o.k. I resign myself to the fact that they

know better. No mattter how much pounding the therapists do, nothing

comes up. They or another team come back in the afternoon, and voila

lots of sputum. I am unique, or my lungs are. I start drinking lots

of fluids after my first and only coffee around 8 am. I drink about 3

liters (3 quarts) of a mix of water/juice or just plain water.

karin

>

>

>

> In a message dated 10/31/2006 8:47:53 A.M. Eastern Standard Time,

> karin_44@... writes:

>

> Very true, but standing in a crowded bus or subway, not exactly a

> pleasant thing to do.

>

> My lungs co-operate most times. I have to cough up phlegm between 2pm

> and 7pm. I try to be at home during those hours. I was dx'd with B.

> 42 years ago. Things were easier then. It's been in the last 5 years

> that I experience pain when I try to supress the cough until a later

> more convenient time. The pain I was told is progression of the B.

>

>

>

> Wonder why that is Karin? Most of my coughing..the really violent

coughing

> happens in the morning. Not too too bad during the day..

> Sandie in MD

>

>

> Never Look Down on Someone

> Unless You're Gonna Help Them Up

>

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Hi Karin,

I just read your e-mail and thought--that sounds like me--I was

diagnosed with bronch in 1992. I have never coughed up anything in

the morning, but start feeling pressure about mid afternoon and

evening and know I need to do postural drainage to feel better. I

am very lucky that most the times I cough is when I need to bring

anything up. I really don't have coughing attacks (unless I get

pneumonia--then of course, everyone knows how that sounds and

feels. Take care.

Jan in St. Louis, MO

> >

> >

> >

> > In a message dated 10/31/2006 8:47:53 A.M. Eastern Standard

Time,

> > karin_44@ writes:

> >

> > Very true, but standing in a crowded bus or subway, not exactly

a

> > pleasant thing to do.

> >

> > My lungs co-operate most times. I have to cough up phlegm

between 2pm

> > and 7pm. I try to be at home during those hours. I was dx'd

with B.

> > 42 years ago. Things were easier then. It's been in the last

5 years

> > that I experience pain when I try to supress the cough until a

later

> > more convenient time. The pain I was told is progression of

the B.

> >

> >

> >

> > Wonder why that is Karin? Most of my coughing..the really

violent

> coughing

> > happens in the morning. Not too too bad during the day..

> > Sandie in MD

> >

> >

> > Never Look Down on Someone

> > Unless You're Gonna Help Them Up

> >

>

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Thanks Marsha! I feel better knowing that I am not alone in this

battle .. I really enjoy sharing with the group!

Janet

>

> We can't worry about what other people think. I think most of my

colleagues

> feel sorry for me when they hear me. And yes, I run to the

bathroom too.

> We can't help that we have this condition. It's just a fact so

don't worry.

> Bronchiectasis is not who you are, you are a person who has

bronchiectasis.

>

>

> Marsha

>

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