pulm visit

[Guest guest]

must have been a day for dr's!

i too saw my pulm today. all of my PFT's were reviewed side by side.

all of my numbers have increased over each one except the diffusion,

that has continually dropped. i will have a new PFT in January.

I asked about rehab and was told at this time i am really functional

enough that i do not need it at this point.........i guess that's a

plus.

now when i got home.......i got the mail of course and i nearly hit

the roof. i had this whole stack of medical bills and was like what

the hell???????? i pay co-payments everytime i see a dr...what are

all these bills........so i had to start calling dr's calling

cigna.......they finally got the bills straightened out......then i

found out i can appeal their decision to force me to do transplant

in dallas and i can file for an out of network advocacy...of course

that is not guaranteed to be approved but it is worth a

shot.....thanks for the tip Leanne!!! we'll go for it and see what

happens.

also, got my paperwork filled out by the doc for my handicapped

plates for our car and truck.

my next dr visit is on the 15th with the rhuematologist for a check

up on my raynauld's.

Joyce, I am so sorry for the day you have had sweetie. heaven knows

we all have them and we all know what you are feeling, i just wish

there was something we could do for each other.....more than what we

are able. just know that we are all here for you and will be here

for you in any way that is humanly possible for us to be. it's time

to let someone worry about the worry wart. <a

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Beth, what in the world are you doing getting sick girly???

keep your butt in bed, take your meds and be a good girl........for

a change. hehehehe i hope you are better soon.

EG

[Guest guest]

Beth, what in the world are you doing getting sick girly??? keep your butt in bed, take your meds and be a good girl........ for a change. hehehehe i hope you are better soon. EG

,

I actually don't feel bad at all. A little tired and coughing more than usual but aside from that...I feel pretty normal. That is, normal for someone with a fatal lung disease. I just took my third dose of Augmentin and now I'll nebulize. I'm going to lay low for a few days and hope that this just clears up without too much trouble.

Hopefully I'll hear 'no pneumonia' from my doctors office when they get the results of the chest x-ray today. Then I'll relax a bit. I just really don't want to be go to the hospital.

You take care of yourself and that goes for everyone else too!

Beth (Fibrotic NSIP 06/06)Draw close. Hold hands. Life is short. God is good.

[Guest guest]

Beth,

What are you using in your nebulizer? Is the doc giving you cough meds. My pulmonary doc decided yesturday that I couldn't have any more (of any kind) cough suppressants. I coughed all night. I got all the gunk out right before I went to bed but still made more. Wish I could sell this snot that my body seems to make in such great abundance. I'd be rich!!!! A nice topic to start the day, huh?

Hugs, Joyce PF 1997 Bronchiectasis 2004 >> Beth, what in the world are you doing getting sick girly??? > keep your butt in bed, take your meds and be a good girl........ for > a change. hehehehe i hope you are better soon.> > EG> > > ,> I actually don't feel bad at all. A little tired and coughing more than usual but aside from that...I feel pretty normal. That is, normal for someone with a fatal lung disease. I just took my third dose of Augmentin and now I'll nebulize. I'm going to lay low for a few days and hope that this just clears up without too much trouble. > > Hopefully I'll hear 'no pneumonia' from my doctors office when they get the results of the chest x-ray today. Then I'll relax a bit. I just really don't want to be go to the hospital.> > You take care of yourself and that goes for everyone else too!> > > Beth (Fibrotic NSIP 06/06)> > Draw close. Hold hands. Life is short. God is good.>

[Guest guest]

they never give me cough suppressants. they give me expectorants, i

have a whole dang cabinet full of them. they are a waste of money

for me since i have never learned how to spit a loogey! i never have

been able to cough that mess up........that is one of the reasons

why when i do get sick i stay sick longer than most people.

i HATE bronchitis. that is what started this whole mess for me. plus

i hate the way i feel when i get it........like i've been run over

by a damn truck.

chuck says he always knows when i am REALLY getting sick.......he

says when i just don't feel up to speed, i'm kinda quiet but i still

move around and do things. when i am REALLY getting sick, i lay

around a whine like a titty baby. lol (i think i'm entitled, right?)

lol

i have an easy week this week i think.....was going to go book

trading today but i got stuck at home with no wheels this morning.

lol so i have nothing to do all day except make some dinner and take

nick to soccer practice this afternoon....depending on how much he

is still coughing. we had a cool front move in and i don't want him

getting any sicker than he is now.......just a cough cough cough!

(scares the crap out of me) he's been to the dr once already and

looks like we are going to have to go again.......what i like about

our dr is that if we have to go in more than once for the same

thing.....he doesn't charge us for the follow ups....need more dr's

like him!

other than that i have no plans this week except to go to synagogue

service. (at least twice)

i am so glad you aren't feeling way down, heaven knows how i hate

being sick. this is one kind of sick but when you have something on

top of it.....well it doesn't always paint a pretty picture. i have

managed to not get sick for about 8 months now......i think that is

very strange considering all the prednisone i have been on and it

knocking my immune system down. for the last 4 or 5 years i have

gotten bronchitis 3 or 4 times a yr and so far this year not had it

at all...(knocking on a

let us know what they say about your xrays as soon as you know.

EG

ll the wood i can find!)

> >

> > Beth, what in the world are you doing getting sick girly???

> > keep your butt in bed, take your meds and be a good girl........

for

> > a change. hehehehe i hope you are better soon.

> >

> > EG

> >

> >

> > ,

> > I actually don't feel bad at all. A little tired and coughing

more

> than usual but aside from that...I feel pretty normal. That is,

normal

> for someone with a fatal lung disease. I just took my third dose of

> Augmentin and now I'll nebulize. I'm going to lay low for a few

days and

> hope that this just clears up without too much trouble.

> >

> > Hopefully I'll hear 'no pneumonia' from my doctors office when

they

> get the results of the chest x-ray today. Then I'll relax a bit. I

just

> really don't want to be go to the hospital.

> >

> > You take care of yourself and that goes for everyone else too!

> >

> >

> > Beth (Fibrotic NSIP 06/06)

> >

> > Draw close. Hold hands. Life is short. God is good.

> >

>

[Guest guest]

Joyce,

I got the 'avoid cough suppressants' talk from Dr. M. yesterday. He said I could take OTC stuff (Delsym or Mucinex DM or something like that) if the cough interfered with my sleep. But for the most part he wants me to cough. Not too much fun although I don't cough anywhere close to what you're talking about. How are you supposed to get any rest? Does he expect you to live without sleeping?

In the nebulizer I'm using what I've been using all along which is DuoNeb. I despise the way the Albuterol part of it makes me feel, so shaky and my heart pounds at times but the Ipratropium Bromide does help me to bring crap up so that's good. I'm also taking the CVS brand version of Mucinex to keep the mucous thin and moving... but that's about it.

Hope you can maybe get a nap in today!! I loved Sher's comment the other day about just sitting and "watching the world go by." That's going to be me for a few days. I'll fill the bird and squirrel feeders this morning and then sit in my recliner and watch the wildlife through my sliders. I've got two rabbits that visit every day. They are too darn cute for words. Beth (Fibrotic NSIP 06/06)Draw close. Hold hands. Life is short. God is good.

Re: pulm visit

Beth,

What are you using in your nebulizer? Is the doc giving you cough meds. My pulmonary doc decided yesturday that I couldn't have any more (of any kind) cough suppressants. I coughed all night. I got all the gunk out right before I went to bed but still made more. Wish I could sell this snot that my body seems to make in such great abundance. I'd be rich!!!! A nice topic to start the day, huh?

Hugs, Joyce PF 1997 Bronchiectasis 2004 >> Beth, what in the world are you doing getting sick girly??? > keep your butt in bed, take your meds and be a good girl........ for > a change. hehehehe i hope you are better soon.> > EG> > > ,> I actually don't feel bad at all. A little tired and coughing more than usual but aside from that...I feel pretty normal. That is, normal for someone with a fatal lung disease. I just took my third dose of Augmentin and now I'll nebulize. I'm going to lay low for a few days and hope that this just clears up without too much trouble. > > Hopefully I'll hear 'no pneumonia' from my doctors office when they get the results of the chest x-ray today. Then I'll relax a bit. I just really don't want to

be go to the hospital.> > You take care of yourself and that goes for everyone else too!> > > Beth (Fibrotic NSIP 06/06)> > Draw close. Hold hands. Life is short. God is good.>

[Guest guest]

Beth,

I made the mistake of telling him about some episodes I have been having. I awaken with a lot of mucus built up and cough really violently, get it out and then cannot draw air in. It is like being choked. It is the scariest thing. It is like my airway just shuts down.

With Bronchiectasis, there is lots of mucus and it is a fight to keep it out. This is the first time that he has not given me Benzoatate...just to use at night. I had another lovely night last night. Naps are just as bad. As soon as I doze, here it comes! Miserable. I love sleep!

I am not supposed to use otc either, but I may do it anyway. I am getting desperate. I also use Duoneb and yes, it makes me shakey also.

I have used store brand Musinex, but it is not time realease and lower mg than Mucinex. So, I have to remember to take it every 4-6 hours.

Hugs, Joyce PF 1997

> >> > Beth, what in the world are you doing getting sick girly??? > > keep your butt in bed, take your meds and be a good girl........ for > > a change. hehehehe i hope you are better soon.> > > > EG> > > > > > ,> > I actually don't feel bad at all. A little tired and coughing more than usual but aside from that...I feel pretty normal. That is, normal for someone with a fatal lung disease. I just took my third dose of Augmentin and now I'll nebulize. I'm going to lay low for a few days and hope that this just clears up without too much trouble. > > > > Hopefully I'll hear 'no pneumonia' from my doctors office when they get the results of the chest x-ray today. Then I'll relax a bit. I just really don't want to be go to the hospital.> > > > You take care of yourself and that goes for everyone else too!> > > > > > Beth (Fibrotic NSIP 06/06)> > > > Draw close. Hold hands. Life is short. God is good.> >>

[Guest guest]

Joyce,

It probably wasn't a mistake to tell him about those episodes of choking. I've been tempted to do the same thing though sometimes. Censor the information I give to the doctor so that he won't restrict me or tell me something I don't want to know. But honestly they can't do their job unless we tell them the whole truth.

The CVS brand version of Mucinex is 400mg and the Mucinex brand extended release is 600mg. I take the extended release at night and the store brand in the daytime. It works out slightly cheaper than taking the Mucinex brand round the clock....I save my pennies where I can. LOL

Did the doctor say why you have the episodes of not being able to draw air back in? Is there anything he can do for you? As a fellow sleep lover I want you to be able to sleep peacefully at least sometimes!

God bless Joyce!

Beth (Fibrotic NSIP 06/06)Draw close. Hold hands. Life is short. God is good.

Re: pulm visit

Beth,

I made the mistake of telling him about some episodes I have been having. I awaken with a lot of mucus built up and cough really violently, get it out and then cannot draw air in. It is like being choked. It is the scariest thing. It is like my airway just shuts down.

With Bronchiectasis, there is lots of mucus and it is a fight to keep it out. This is the first time that he has not given me Benzoatate.. .just to use at night. I had another lovely night last night. Naps are just as bad. As soon as I doze, here it comes! Miserable. I love sleep!

I am not supposed to use otc either, but I may do it anyway. I am getting desperate. I also use Duoneb and yes, it makes me shakey also.

I have used store brand Musinex, but it is not time realease and lower mg than Mucinex. So, I have to remember to take it every 4-6 hours.

Hugs, Joyce PF 1997

> >> > Beth, what in the world are you doing getting sick girly??? > > keep your butt in bed, take your meds and be a good girl........ for > > a change. hehehehe i hope you are better soon.> > > > EG> > > > > > ,> > I actually don't feel bad at all. A little tired and coughing more than usual but aside from that...I feel pretty normal. That is, normal for someone with a fatal lung disease. I just took my third dose of Augmentin and now I'll nebulize. I'm going to lay low for a few days and hope that this just clears up without too much trouble. > > > > Hopefully I'll hear 'no pneumonia' from my doctors office when they

get the results of the chest x-ray today. Then I'll relax a bit. I just really don't want to be go to the hospital.> > > > You take care of yourself and that goes for everyone else too!> > > > > > Beth (Fibrotic NSIP 06/06)> > > > Draw close. Hold hands. Life is short. God is good.> >>

[Guest guest]

Beth,

Just read your email.

I am allergic to Albuterol. Same symptoms

a you that were pooh poohed by the Drs. but one time I ended up in ICU. They took

me seriously then. Drs kept saying no one is allergic to Albuterol. My Dr. put

his arms around me and apologized.

I use Zopinex in my nebulizer and also

carry a Zopinex Inhaler.

P.F. 4/2006

From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of Beth

Sent: Tuesday, November 07, 2006

9:01 AM

To: Breathe-Support

Subject: Re: Re:

pulm visit

Joyce,

I got the 'avoid cough suppressants' talk from Dr. M.

yesterday. He said I could take OTC stuff (Delsym or Mucinex DM or

something like that) if the cough interfered with my sleep. But for

the most part he wants me to cough. Not too much fun although I

don't cough anywhere close to what you're talking about. How are you

supposed to get any rest? Does he expect you to live without sleeping?

In the nebulizer I'm using what I've been using all

along which is DuoNeb. I despise the way the Albuterol part of it makes

me feel, so shaky and my heart pounds at times but the Ipratropium Bromide does

help me to bring crap up so that's good. I'm also

taking the CVS brand version of Mucinex to keep the mucous

thin and moving... but that's about it.

Hope you can maybe get a nap in today!! I loved

Sher's comment the other day about just sitting and " watching

the world go by. " That's going to be me for a few days.

I'll fill the bird and squirrel feeders this morning and then sit in my

recliner and watch the wildlife through my sliders. I've got

two rabbits that visit every day. They are too darn cute for words.

Beth (Fibrotic NSIP

06/06)

Draw close. Hold hands. Life is short.

God is good.

Re: pulm visit

Beth,

What are you using in your nebulizer?

Is the doc giving you cough meds. My pulmonary doc decided yesturday that

I couldn't have any more (of any kind) cough suppressants. I

coughed all night. I got all the gunk out right before I went to bed but

still made more. Wish I could sell this snot that my body seems to make

in such great abundance. I'd be rich!!!! A nice topic to start the

day, huh?

Hugs, Joyce PF 1997

Bronchiectasis 2004

>

> Beth, what in the world are you doing getting sick girly???

> keep your butt in bed, take your meds and be a good girl........ for

> a change. hehehehe i hope you are better soon.

>

> EG

>

>

> ,

> I actually don't feel bad at all. A little tired and coughing more than

usual but aside from that...I feel pretty normal. That is, normal for someone

with a fatal lung disease. I just took my third dose of Augmentin and now I'll

nebulize. I'm going to lay low for a few days and hope that this just clears up

without too much trouble.

>

> Hopefully I'll hear 'no pneumonia' from my doctors office when they get

the results of the chest x-ray today. Then I'll relax a bit. I just really

don't wan! t to be go to the hospital.

>

> You take care of yourself and that goes for everyone else too!

>

>

> Beth (Fibrotic NSIP 06/06)

>

> Draw close. Hold hands. Life is short. God is good.

>

[Guest guest]

I agree, that it is important to consult with the doctor about everything we are doing, so they have a complete picture. However, they are not Gods and so after we have listened to why they feel we should or shouldnt do something then we can decide whether to follow that recommendation for that is all it really is, a recommendation. Each person is different in how they react to things, that is why someone who smokes for 50 years may never come down with a lung disease and someone, like me, who never smoked and never was around smokers came down with Interstitital Pneumonitis, a smokers disease. We have all probably tried a vitamin or herb that someone told them practically cured them of something and when we try it, it does nothing for us. Why? Because WE didnt need that particular thing or were not deficient in it. It is the same with medicines. Some doctors have a poor experience with a medicine with a few of their patients and so tell all of them not to take it as it doesnt work. The truth is it works for someone or it wouldnt continue being sold. I am not saying we shouldnt heed the advice of our doctors as they are more educated than we are, I am just saying that if something is working for us, the doctor should be able to give us an awfully good reason not to take it for us to heed that advice. We all have common sense, at least those of us over 30 Hee hee, and we should also listen to it in addition to our doctors counsel. Ok thats my two cents worth, you can send it to me in the next posting. LOL

Carolyn

-- Re: Re: pulm visit

Joyce,

It probably wasn't a mistake to tell him about those episodes of choking. I've been tempted to do the same thing though sometimes. Censor the information I give to the doctor so that he won't restrict me or tell me something I don't want to know. But honestly they can't do their job unless we tell them the whole truth.

The CVS brand version of Mucinex is 400mg and the Mucinex brand extended release is 600mg. I take the extended release at night and the store brand in the daytime. It works out slightly cheaper than taking the Mucinex brand round the clock....I save my pennies where I can. LOL

Did the doctor say why you have the episodes of not being able to draw air back in? Is there anything he can do for you? As a fellow sleep lover I want you to be able to sleep peacefully at least sometimes!

God bless Joyce!

Beth (Fibrotic NSIP 06/06)Draw close. Hold hands. Life is short. God is good.

Re: pulm visit

Beth,

I made the mistake of telling him about some episodes I have been having. I awaken with a lot of mucus built up and cough really violently, get it out and then cannot draw air in. It is like being choked. It is the scariest thing. It is like my airway just shuts down.

With Bronchiectasis, there is lots of mucus and it is a fight to keep it out. This is the first time that he has not given me Benzoatate.. .just to use at night. I had another lovely night last night. Naps are just as bad. As soon as I doze, here it comes! Miserable. I love sleep!

I am not supposed to use otc either, but I may do it anyway. I am getting desperate. I also use Duoneb and yes, it makes me shakey also.

I have used store brand Musinex, but it is not time realease and lower mg than Mucinex. So, I have to remember to take it every 4-6 hours.

Hugs, Joyce PF 1997

> >> > Beth, what in the world are you doing getting sick girly??? > > keep your butt in bed, take your meds and be a good girl........ for > > a change. hehehehe i hope you are better soon.> > > > EG> > > > > > ,> > I actually don't feel bad at all. A little tired and coughing more than usual but aside from that...I feel pretty normal. That is, normal for someone with a fatal lung disease. I just took my third dose of Augmentin and now I'll nebulize. I'm going to lay low for a few days and hope that this just clears up without too much trouble. > > > > Hopefully I'll hear 'no pneumonia' from my doctors office when they get the results of the chest x-ray today. Then I'll relax a bit. I just really don't want to be go to the hospital.> > > > You take care of yourself and that goes for everyone else too!> > > > > > Beth (Fibrotic NSIP 06/06)> > > > Draw close. Hold hands. Life is short. God is good.> >>

[Guest guest]

i use albuterol in the nebulizer but i use combivent

inhalers....about 8 of them a month!

EG

> >

> > Beth, what in the world are you doing getting sick girly???

> > keep your butt in bed, take your meds and be a good girl........

for

> > a change. hehehehe i hope you are better soon.

> >

> > EG

> >

> >

> > ,

> > I actually don't feel bad at all. A little tired and coughing

more than

> usual but aside from that...I feel pretty normal. That is, normal

for

> someone with a fatal lung disease. I just took my third dose of

Augmentin

> and now I'll nebulize. I'm going to lay low for a few days and

hope that

> this just clears up without too much trouble.

> >

> > Hopefully I'll hear 'no pneumonia' from my doctors office when

they get

> the results of the chest x-ray today. Then I'll relax a bit. I

just really

> don't wan! t to be go to the hospital.

> >

> > You take care of yourself and that goes for everyone else too!

> >

> >

> > Beth (Fibrotic NSIP 06/06)

> >

> > Draw close. Hold hands. Life is short. God is good.

> >

>

[Guest guest]

Carolyn;

I agree with every thing you said, except that ipf is a smokers disease. Dip and rb/ild are believed to be caused by smoking but ipf is caused by almost every thing except smoking. Smoking obviously doesn't help but it isn't the cause for ipf.

Gordon ipf/uip 12/03

Re: pulm visit

Beth,

I made the mistake of telling him about some episodes I have been having. I awaken with a lot of mucus built up and cough really violently, get it out and then cannot draw air in. It is like being choked. It is the scariest thing. It is like my airway just shuts down.

With Bronchiectasis, there is lots of mucus and it is a fight to keep it out. This is the first time that he has not given me Benzoatate.. .just to use at night. I had another lovely night last night. Naps are just as bad. As soon as I doze, here it comes! Miserable. I love sleep!

I am not supposed to use otc either, but I may do it anyway. I am getting desperate. I also use Duoneb and yes, it makes me shakey also.

I have used store brand Musinex, but it is not time realease and lower mg than Mucinex. So, I have to remember to take it every 4-6 hours.

Hugs, Joyce PF 1997

> >> > Beth, what in the world are you doing getting sick girly??? > > keep your butt in bed, take your meds and be a good girl........ for > > a change. hehehehe i hope you are better soon.> > > > EG> > > > > > ,> > I actually don't feel bad at all. A little tired and coughing more than usual but aside from that...I feel pretty normal. That is, normal for someone with a fatal lung disease. I just took my third dose of Augmentin and now I'll nebulize. I'm going to lay low for a few days and hope that this just clears up without too much trouble. > > > > Hopefully I'll hear 'no pneumonia' from my doctors office when they get the results of the chest x-ray today. Then I'll relax a bit. I just really don't want to be go to the hospital.> > > > You take care of yourself and that goes for everyone else too!> > > > > > Beth (Fibrotic NSIP 06/06)> > > > Draw close. Hold hands. Life is short. God is good.> >>

[Guest guest]

IPF stands for Idiopathic Pulmonary Fibrosis--"Idiopathic" means no known cause--So that means they do not know what causes IPF. COPD is a smokers disease--IPF is not

Jan

--------- Re: pulm visit

Beth,

I made the mistake of telling him about some episodes I have been having. I awaken with a lot of mucus built up and cough really violently, get it out and then cannot draw air in. It is like being choked. It is the scariest thing. It is like my airway just shuts down.

With Bronchiectasis, there is lots of mucus and it is a fight to keep it out. This is the first time that he has not given me Benzoatate.. .just to use at night. I had another lovely night last night. Naps are just as bad. As soon as I doze, here it comes! Miserable. I love sleep!

I am not supposed to use otc either, but I may do it anyway. I am getting desperate. I also use Duoneb and yes, it makes me shakey also.

I have used store brand Musinex, but it is not time realease and lower mg than Mucinex. So, I have to remember to take it every 4-6 hours.

Hugs, Joyce PF 1997

> >> > Beth, what in the world are you doing getting sick girly??? > > keep your butt in bed, take your meds and be a good girl........ for > > a change. hehehehe i hope you are better soon.> > > > EG> > > > > > ,> > I actually don't feel bad at all. A little tired and coughing more than usual but aside from that...I feel pretty normal. That is, normal for someone with a fatal lung disease. I just took my third dose of Augmentin and now I'll nebulize. I'm going to lay low for a few days and hope that this just clears up without too much trouble. > > > > Hopefully I'll hear 'no pneumonia' from my doctors office when they get the results of the ches

t x-ray today. Then I'll relax a bit. I just really don't want to be go to the hospital.> > > > You take care of yourself and that goes for everyone else too!> > > > > > Beth (Fibrotic NSIP 06/06)> > > > Draw close. Hold hands. Life is short. God is good.> >>

[Guest guest]

Beth,

No, he didn't tell me why it was happening. It doesn't happen often, but sometimes it happens two or three days in a row. He suggested that I do pursed lip breathing when it happens. I love him, but he seemed not to get it. I told him that you don't understand...I cannot breathe in or out. Nothing. We have a friend that said this happened to him because of reflux. Caused spasms. He even passed out. I do have reflux, so maybe it has something to do with that. ??? In any event he didn't think it would be a good idea to use any cough suppressant from now on.

If I don't find a way to sleep, I will have to go on the streets looking for black market drugs. ha! ha!

I am going to do what you are doing with the Mucinex/store brand. I will take otc during the day. Good idea!

Are you doing better with the rattling? Did you hear about your x ray?

Hugs, Joyce PF 1997 Bronchiectasis 2004

> > >> > > Beth, what in the world are you doing getting sick girly??? > > > keep your butt in bed, take your meds and be a good girl........ for > > > a change. hehehehe i hope you are better soon.> > > > > > EG> > > > > > > > > ,> > > I actually don't feel bad at all. A little tired and coughing more than usual but aside from that...I feel pretty normal. That is, normal for someone with a fatal lung disease. I just took my third dose of Augmentin and now I'll nebulize. I'm going to lay low for a few days and hope that this just clears up without too much trouble. > > > > > > Hopefully I'll hear 'no pneumonia' from my doctors office when they get the results of the chest x-ray today. Then I'll relax a bit. I just really don't want to be go to the hospital.> > > > > > You take care of yourself and that goes for everyone else too!> > > > > > > > > Beth (Fibrotic NSIP 06/06)> > > > > > Draw close. Hold hands. Life is short. God is good.> > >> >>

[Guest guest]

Joyce,

Hmmmmm that's interesting. I wonder if it could be related to reflux. Maybe the severe coughing causes some kind of spasm that makes your diaphragm freeze up. If you can't get any air in or out it does sound like you can't move your diaphragm at all. I wonder.... It sounds awful. How long does it take for it to pass? I would get panicky pretty quickly and that would probably only make it worse. I could see how one could get to the point of passing out. What do you take for reflux? I'm on Protonix and Carafate both really preventative so far as I haven't ever had any real symptoms of reflux but my doctor is one of those that believes all folks with this kind of lung disease should be treated for reflux.

I actually don't feel bad at all tonight. I can still hear crap in my chest but it's not any worse and what comes up now is clear. At the end of the day the x-ray lab still had not faxed the results of my chest film to my doctor's office. The office was hounding them, I'm sure they'll get it in the morning. I'm not too worried, at least not yet.

Just trying to do what I'm supposed to and praying that the Augmentin clears it.

I'm off to bed now, hope you get some rest tonight. I'll be praying for all of us

If anyone would offer a little prayer for my son tonight I'd appreciate it. He's going through a difficult time at the moment. The kid really needs a dad and his father (my ex-husband) is well.... lets just say he's not interested. Thanks all!

Love, Beth (Fibrotic NSIP 06/06)Draw close. Hold hands. Life is short. God is good.

Re: pulm visit

Beth,

No, he didn't tell me why it was happening. It doesn't happen often, but sometimes it happens two or three days in a row. He suggested that I do pursed lip breathing when it happens. I love him, but he seemed not to get it. I told him that you don't understand.. .I cannot breathe in or out. Nothing. We have a friend that said this happened to him because of reflux. Caused spasms. He even passed out. I do have reflux, so maybe it has something to do with that. ??? In any event he didn't think it would be a good idea to use any cough suppressant from now on.

If I don't find a way to sleep, I will have to go on the streets looking for black market drugs. ha! ha!

I am going to do what you are doing with the Mucinex/store brand. I will take otc during the day. Good idea!

Are you doing better with the rattling? Did you hear about your x ray?

Hugs, Joyce PF 1997 Bronchiectasis 2004

> > >> > > Beth, what in the world are you doing getting sick girly??? > > > keep your butt in bed, take your meds and be a good girl........ for > > > a change. hehehehe i hope you are better soon.> > > > > > EG>

> > > > > > > > ,> > > I actually don't feel bad at all. A little tired and coughing more than usual but aside from that...I feel pretty normal. That is, normal for someone with a fatal lung disease. I just took my third dose of Augmentin and now I'll nebulize. I'm going to lay low for a few days and hope that this just clears up without too much trouble. > > > > > > Hopefully I'll hear 'no pneumonia' from my doctors office when they get the results of the chest x-ray today. Then I'll relax a bit. I just really don't want to be go to the hospital.> > > > > > You take care of yourself and that goes for everyone else too!> > > > > > > > > Beth (Fibrotic NSIP 06/06)> > > > > > Draw close. Hold hands. Life is short. God is good.> > >>

>>

[Guest guest]

Beth,

I take Prilosec (generic Omeprazole). I am up to 80 mg. I didn't continue taking it when first diagnosed and have suffered consequences of that decision. I didn't think it was necessary. I have since learned that it goes hand in hand with fibrosis. I don't understand why,... but I am a believer now.

Our friend who has done this with reflux said that he did it at the hospital where he had gone thinking he was having a heart attack. He said when he did it again there in emergency that it scared everyone. He said the doctor told him that he was getting air in and would not die from it happening. It sure feels like I will die. I am always alone when it happens and I can't even make a sound so that my husband can hear. It is terrifying! After it is all over, I am sooooo weak.

I will pray for your Matt. I understand what he is going through. I have two teenage grandsons and a 12 year old grandaughter who had thier dad walk out when they were small. They break my heart. My husband has tried so hard to be a dad to them, but it is not the same. There will be a hot place in hell reserved for these guys!

Sleep tight!

Hugs, Joyce > > > >> > > > Beth, what in the world are you doing getting sick girly??? > > > > keep your butt in bed, take your meds and be a good girl........ for > > > > a change. hehehehe i hope you are better soon.> > > > > > > > EG> > > > > > > > > > > > ,> > > > I actually don't feel bad at all. A little tired and coughing more than usual but aside from that...I feel pretty normal. That is, normal for someone with a fatal lung disease. I just took my third dose of Augmentin and now I'll nebulize. I'm going to lay low for a few days and hope that this just clears up without too much trouble. > > > > > > > > Hopefully I'll hear 'no pneumonia' from my doctors office when they get the results of the chest x-ray today. Then I'll relax a bit. I just really don't want to be go to the hospital.> > > > > > > > You take care of yourself and that goes for everyone else too!> > > > > > > > > > > > Beth (Fibrotic NSIP 06/06)> > > > > > > > Draw close. Hold hands. Life is short. God is good.> > > >> > >> >>

[Guest guest]

I have had the violent coughing for going on 2 years now, and I have been on Robitussin with codeine to sleep for all that time, it works to allow me to sleep 6 hours without coughing. The rx says to take every 6 hrs around the clock and he knows I only take when sleeping. He wants me to take half a dose during the day when I have coughing really bad.

I have coughed so much I throw up and it does cut off all air. The Robitussin with codeine it worth it. I get a bottle 490 ml for $10.00 copay and it last about 3 months, just taking at night.

Donna in DE

[Guest guest]

Donna,

The pulmo said definatly nothing with codeine. He said that it slows respiration and is dangerous for me. He has never given me anything with codeine but the benzonatate that I took helped some. But, now he has nixed that.

Fun, fun, fun.....

Hugs, Joyce PF 1997 Bronchiectasis 2004 >> I have had the violent coughing for going on 2 years now, and I have been on> Robitussin with codeine to sleep for all that time, it works to allow me to> sleep 6 hours without coughing. The rx says to take every 6 hrs around the> clock and he knows I only take when sleeping. He wants me to take half a> dose during the day when I have coughing really bad. > I have coughed so much I throw up and it does cut off all air. The> Robitussin with codeine it worth it. I get a bottle 490 ml for $10.00 copay> and it last about 3 months, just taking at night. > > Donna in DE>

[Guest guest]

Dear Gordon:

I think if you re-read what I wrote you will see that I didnt say IPF was a smokers disease, I said the disease I have is a smokers disease. I have DIP (Desquamative Interstitial Pneumonitis), (one of the many types of Interstitial Lung Disease) which the doctors, as well as everything I have read states is caused by either smoking or being a passive smoker. I am one of the very rare persons who was neither and got it anyway. Sorry for the confusion.

Carolyn

-- Re: Re: pulm visit

Carolyn;

I agree with every thing you said, except that ipf is a smokers disease. Dip and rb/ild are believed to be caused by smoking but ipf is caused by almost every thing except smoking. Smoking obviously doesn't help but it isn't the cause for ipf.

Gordon ipf/uip 12/03

Re: pulm visit

Beth,

I made the mistake of telling him about some episodes I have been having. I awaken with a lot of mucus built up and cough really violently, get it out and then cannot draw air in. It is like being choked. It is the scariest thing. It is like my airway just shuts down.

With Bronchiectasis, there is lots of mucus and it is a fight to keep it out. This is the first time that he has not given me Benzoatate.. .just to use at night. I had another lovely night last night. Naps are just as bad. As soon as I doze, here it comes! Miserable. I love sleep!

I am not supposed to use otc either, but I may do it anyway. I am getting desperate. I also use Duoneb and yes, it makes me shakey also.

I have used store brand Musinex, but it is not time realease and lower mg than Mucinex. So, I have to remember to take it every 4-6 hours.

Hugs, Joyce PF 1997

> >> > Beth, what in the world are you doing getting sick girly??? > > keep your butt in bed, take your meds and be a good girl........ for > > a change. hehehehe i hope you are better soon.> > > > EG> > > > > > ,> > I actually don't feel bad at all. A little tired and coughing more than usual but aside from that...I feel pretty normal. That is, normal for someone with a fatal lung disease. I just took my third dose of Augmentin and now I'll nebulize. I'm going to lay low for a few days and hope that this just clears up without too much trouble. > > > > Hopefully I'll hear 'no pneumonia' from my doctors office when they get the results of the chest x-ray today. Then I'll relax a bit. I just really don't want to be go to the hospital.> > > > You take care of yourself and that goes for everyone else too!> > > > > > Beth (Fibrotic NSIP 06/06)> > > > Draw close. Hold hands. Life is short. God is good.> >>

[Guest guest]

Jan,

I was told there are people who know how they got pf...cement workers, hayers, etc. I think posted a long list of causes.

Some of us do not know "how". It can even be genetic.

I don't know the "how" either.

Sher ipf 5-06

Re: pulm visit

Beth,

I made the mistake of telling him about some episodes I have been having. I awaken with a lot of mucus built up and cough really violently, get it out and then cannot draw air in. It is like being choked. It is the scariest thing. It is like my airway just shuts down.

With Bronchiectasis, there is lots of mucus and it is a fight to keep it out. This is the first time that he has not given me Benzoatate.. .just to use at night. I had another lovely night last night. Naps are just as bad. As soon as I doze, here it comes! Miserable. I love sleep!

I am not supposed to use otc either, but I may do it anyway. I am getting desperate. I also use Duoneb and yes, it makes me shakey also.

I have used store brand Musinex, but it is not time realease and lower mg than Mucinex. So, I have to remember to take it every 4-6 hours.

Hugs, Joyce PF 1997

> >> > Beth, what in the world are you doing getting sick girly??? > > keep your butt in bed, take your meds and be a good girl........ for > > a change. hehehehe i hope you are better soon.> > > > EG> > > > > > ,> > I actually don't feel bad at all. A little tired and coughing more than usual but aside from that...I feel pretty normal. That is, normal for someone with a fatal lung disease. I just took my third dose of Augmentin and now I'll nebulize. I'm going to lay low for a few days and hope that this just clears up without too much trouble. > > > > Hopefully I'll hear 'no pneumonia' from my doctors office when they get the results of the! ches t x-ray today. Then I'll relax a bit. I just really don't want to be go to the hospital.> > > > You take care of yourself and that goes for everyone else too!> > > > > > Beth (Fibrotic NSIP 06/06)> > > > Draw close. Hold hands. Life is short. God is good.> >>