Re: Cold Air Mask

[Guest guest]

I knew there was a really good reason I stay in the South..lol..

Sorry you've had a rough time getting out and about. I had to turn the AC on in my car when I left the store today... almost more than I could do..hee hee..

Love and Prayers, Peggy 9/04 ipf Florida

Beth,

Have you used your cold air mask yet? Did anyone else get one? I have been using mine, especially today....20 degrees outside. It is so nice. Warms the air up and keeps me from coughing my lungs out.

However, all this cold weather apparel is a little much to deal with. Today, I got all bundled up and started out the door. Well, I realized soon enough that I was still tethered to the concentrator. So, to change from that to my portable....I had to take off my gloves, unzip my coat (tubing zipped up inside), unwrap my scarf, take off my mask, untangle it and my glasses from the tubing.....switch tubing, put everything back on .... and then I could go! Aaaargh!

The mask lo

[Guest guest]

Being overweight, I dont wear anything anymore that looks like or resembles in any way, a pig, cow, or elephant. Here is why. Back many years when I was only 20 lbs overweight, after having a baby, but all in my midriff, I got this free shirt from and that was baby blue and said "100% Fat Free". I had lost 10 lbs and was proud of my loss so proudly wore the shirt. The word "Free", however, was on the second line down. Well as you might guess that word free kept getting trapped between my breast and the bulge and became hidden. So everywhere I went, YES, I proudly proclaimed I was "100% Fat". I was confused for the longest time why people kept nudging others and laughing. It was not until I looked down that I saw the reason. I could not wait to get home and rip that shirt off. I cannot remember whether I ripped it up or burned it but it was never found again.

LOL So no cows, pigs, elephants or anything that looks like it for me. CarolynJoyce wrote: Beth, Have you used your cold air mask yet? Did anyone else get one? I have been using mine, especially today....20 degrees outside. It is so nice. Warms the air up and keeps me from coughing my lungs out. However, all this cold weather apparel is a little much to deal with. Today, I got all bundled up and started out the door. Well, I realized soon enough that I was still tethered to the concentrator. So, to change from that to my portable....I had to take off my gloves, unzip my coat

(tubing zipped up inside), unwrap my scarf, take off my mask, untangle it and my glasses from the tubing.....switch tubing, put everything back on .... and then I could go! Aaaargh! The mask looks like a pigs nose, don't you think? Hugs, Joyce PF 1997 Bronchiectasis 2004 INDIANA

[Guest guest]

Joyce,

Mine just came yesterday and since it's been over 70 degrees the last couple of days I've not had an opportunity to use it yet. Cold front coming through right this minute though....winds are howling outside and it's pouring rain. I will undoubtedly be able to use it shortly. It does look a bit like a pig snout doesn't it? They should make it pink! I'm glad to hear it helps. The way the cold takes my breath away is completely unnerving.

I'm really whooped tonight, don't know why just very, very tired. My aunt wanted me to go to the movies but I took a pass which I hate to do but there's no point in paying for a movie when I know I'll go to sleep.

This may be a weird question but does anyone else have trouble with stress incontinence? I know it's from the coughing, it's just so frustrating to not be able to control such basic function like peeing for cryin out loud. I can't remember anyone else mentioning this...is it just me?

Beth Fibrotic NSIP 06/06

Don't try to explain it, just nod your head.

Breathe in, breathe out. Move on. J. Buffett

Cold Air Mask

Beth,

Have you used your cold air mask yet? Did anyone else get one? I have been using mine, especially today....20 degrees outside. It is so nice. Warms the air up and keeps me from coughing my lungs out.

However, all this cold weather apparel is a little much to deal with. Today, I got all bundled up and started out the door. Well, I realized soon enough that I was still tethered to the concentrator. So, to change from that to my portable.... I had to take off my gloves, unzip my coat (tubing zipped up inside), unwrap my scarf, take off my mask, untangle it and my glasses from the tubing.....switch tubing, put everything back on .... and then I could go! Aaaargh!

The mask looks like a pigs nose, don't you think?

Hugs, Joyce PF 1997 Bronchiectasis 2004 INDIANA

[Guest guest]

Kegle, Kegle, Kegle - is that the correct spelling? joy Beth wrote: Joyce, Mine just came yesterday and since it's been over 70 degrees the last couple of days I've not had an opportunity to use it yet. Cold front coming through right this minute though....winds are howling outside and it's pouring rain. I will undoubtedly be able to use it

shortly. It does look a bit like a pig snout doesn't it? They should make it pink! I'm glad to hear it helps. The way the cold takes my breath away is completely unnerving. I'm really whooped tonight, don't know why just very, very tired. My aunt wanted me to go to the movies but I took a pass which I hate to do but there's no point in paying for a movie when I know I'll go to sleep. This may be a weird question but does anyone else have trouble with stress incontinence? I know it's from the coughing, it's just so frustrating to not be able to control such basic function like peeing for cryin out loud. I can't remember anyone else mentioning this...is it just me? Beth Fibrotic NSIP

06/06 Don't try to explain it, just nod your head. Breathe in, breathe out. Move on. J. Buffett Cold Air Mask Beth, Have you used your cold air mask yet? Did anyone else get one? I have been using mine, especially today....20 degrees outside. It is so nice. Warms the air up and keeps me from coughing my lungs out. However, all this cold weather apparel is a little much to deal with. Today, I got all bundled up and started out the door. Well, I realized soon enough that I was still tethered to the concentrator. So, to change from that to my portable.... I had to take off my gloves, unzip my coat (tubing zipped up inside), unwrap my scarf, take off my mask, untangle it and my glasses from the tubing.....switch tubing, put everything back on .... and then I could go! Aaaargh! The mask looks like a pigs nose, don't you

think? Hugs, Joyce PF 1997 Bronchiectasis 2004 INDIANA Joy (IPF 3/06) Today is a gift for each of us. Enjoy it.

Have a burning question? Go to Yahoo! Answers and get answers from real people who know.

[Guest guest]

Thanks Joy but I Kegel my fanny off and it doesn't make much difference...I think the coughing may outweigh the kegeling. I'm going to talk to my doctor about it when I go on the 14th.

Beth Fibrotic NSIP 06/06

Don't try to explain it, just nod your head.

Breathe in, breathe out. Move on. J. Buffett

Cold Air Mask

Beth,

Have you used your cold air mask yet? Did anyone else get one? I have been using mine, especially today....20 degrees outside. It is so nice. Warms the air up and keeps me from coughing my lungs out.

However, all this cold weather apparel is a little much to deal with. Today, I got all bundled up and started out the door. Well, I realized soon enough that I was still tethered to the concentrator. So, to change from that to my portable.... I had to take off my gloves, unzip my coat (tubing zipped up inside), unwrap my scarf, take off my mask, untangle it and my glasses from the tubing.....switch tubing, put everything back on .... and then I could go! Aaaargh!

The mask looks like a pigs nose, don't you think?

Hugs, Joyce PF 1997 Bronchiectasis 2004 INDIANA

Joy

(IPF 3/06)

Today is a gift for each

of us. Enjoy it.

Have a burning question? Go to Yahoo! Answers and get answers from real people who know.

[Guest guest]

I too have stress incontinence and the urologist told me that Keigle exercises dont work. Thats after I turned blue doing them for years. But he is right. The only thing that can be done is surgery where they take a band of ligament and use it as a platform to support the bladder. I was scheduled to have that done when in Pre-op they found I had low O2 sats and they sent me to the pulmonologist,and cancelled my surgery...and here I am in this group, go figure. CarolynJoy wrote: Kegle, Kegle, Kegle - is that the correct spelling? joy Beth wrote: Joyce, Mine just came yesterday and since it's been over 70 degrees the last couple of days I've not had an opportunity to use it yet. Cold front coming through right this minute though....winds are howling outside and it's pouring rain. I will undoubtedly be able to use it shortly. It does look a bit like a pig snout doesn't it? They should make it pink! I'm glad to hear it helps. The way the cold takes my breath away is completely unnerving. I'm really whooped tonight, don't know why just very, very tired. My aunt wanted me to go to the movies but I took a pass which I hate to do but there's no point in paying for a movie when I know I'll go to sleep. This may be a weird question but does anyone else have trouble with stress incontinence? I know it's from the

coughing, it's just so frustrating to not be able to control such basic function like peeing for cryin out loud. I can't remember anyone else mentioning this...is it just me? Beth Fibrotic NSIP 06/06 Don't try to explain it, just nod your head. Breathe in, breathe out. Move on. J. Buffett Cold Air Mask Beth, Have you used your cold air mask yet? Did anyone else get one? I have been using mine, especially today....20 degrees outside. It is so nice. Warms the air up and keeps me from coughing my lungs out. However, all this cold weather apparel is a little much to deal with. Today, I got all bundled up and started out the door. Well, I realized soon enough that I was still tethered to the concentrator. So, to change from that to

my portable.... I had to take off my gloves, unzip my coat (tubing zipped up inside), unwrap my scarf, take off my mask, untangle it and my glasses from the tubing.....switch tubing, put everything back on .... and then I could go! Aaaargh! The mask looks like a pigs nose, don't you think? Hugs, Joyce PF 1997 Bronchiectasis 2004 INDIANA Joy (IPF 3/06) Today is a gift for each of us. Enjoy it. Have a burning question? Go to Yahoo! Answers and get answers from real people who know.

[Guest guest]

Sometimes my husband makes me laugh so hard I can't get to bathroom soon enough. That's not funny!! Joy Beth wrote: Thanks Joy but I Kegel my fanny off and it doesn't make much difference...I think the coughing may outweigh the kegeling. I'm going to talk to my doctor about it when I go on the 14th. Beth Fibrotic NSIP 06/06 Don't try to explain it, just nod your head. Breathe in, breathe out. Move on. J. Buffett Cold Air Mask Beth, Have you used your cold air mask yet? Did anyone else get one? I have been using mine, especially today....20 degrees outside. It is so nice. Warms the air up and keeps me from coughing my

lungs out. However, all this cold weather apparel is a little much to deal with. Today, I got all bundled up and started out the door. Well, I realized soon enough that I was still tethered to the concentrator. So, to change from that to my portable.... I had to take off my gloves, unzip my coat (tubing zipped up inside), unwrap my scarf, take off my mask, untangle it and my glasses from the tubing.....switch tubing, put everything back on .... and then I could go! Aaaargh! The mask looks like a pigs nose, don't you think? Hugs, Joyce PF 1997 Bronchiectasis 2004 INDIANA Joy (IPF 3/06) Today is a gift for each of us. Enjoy it. Have a burning question? Go to Yahoo! Answers and get answers from real people who know. Joy (IPF 3/06) Today is a gift for each of us. Enjoy it.

Have a burning question? Go to Yahoo! Answers and get answers from real people who know.

[Guest guest]

I'm surprised - I thought keigle was the way to go. My sister told me there is a new way to perform this ridiculous exercise. JoyCarolyn Merritt wrote: I too have stress incontinence and the urologist told me that Keigle exercises dont work. Thats after I turned blue doing them for years. But he is right. The only thing that can be done is surgery where they take a band of ligament and use it as a platform to support the bladder. I was scheduled to have that done when in Pre-op

they found I had low O2 sats and they sent me to the pulmonologist,and cancelled my surgery...and here I am in this group, go figure. CarolynJoy <joynoel3208> wrote: Kegle, Kegle, Kegle - is that the correct spelling? joy Beth <mbmurtha> wrote: Joyce, Mine just came yesterday and since it's been over 70 degrees the last couple of days I've not had an opportunity to use it yet. Cold front coming through right this minute though....winds are howling outside and it's pouring rain. I will undoubtedly be able to use it shortly. It does

look a bit like a pig snout doesn't it? They should make it pink! I'm glad to hear it helps. The way the cold takes my breath away is completely unnerving. I'm really whooped tonight, don't know why just very, very tired. My aunt wanted me to go to the movies but I took a pass which I hate to do but there's no point in paying for a movie when I know I'll go to sleep. This may be a weird question but does anyone else have trouble with stress incontinence? I know it's from the coughing, it's just so frustrating to not be able to control such basic function like peeing for cryin out loud. I can't remember anyone else mentioning this...is it just me? Beth Fibrotic NSIP 06/06 Don't try to explain it, just nod your head. Breathe in, breathe out. Move on. J. Buffett Cold Air Mask Beth, Have you used your cold air mask yet? Did anyone else get one? I have been using mine, especially today....20 degrees outside. It is so nice. Warms the air up and keeps me from coughing my lungs out. However, all this cold weather apparel is a little much to deal with. Today, I got all bundled up and started out the door. Well, I realized soon enough that I was still tethered to the concentrator. So, to change from that to my portable.... I had to take off my gloves, unzip my coat (tubing zipped up inside), unwrap my scarf, take off my mask, untangle it and my glasses from the tubing.....switch tubing, put everything back on .... and then I could go! Aaaargh! The mask looks like a pigs nose, don't you think? Hugs, Joyce PF 1997 Bronchiectasis 2004 INDIANA Joy (IPF 3/06) Today is a gift for each of us. Enjoy it. Have a burning question? Go to Yahoo! Answers and get answers from real people who know. Joy (IPF 3/06) Today is a gift for each of us. Enjoy it.

Everyone is raving about the all-new Yahoo! Mail beta.

[Guest guest]

Thanks Carolyn, I too have been doing them like crazy but don't see any difference at all. I know that I'm a poor candidate for surgery because of the condition of my lungs, plus they had a really hard time intubating me when I had the lung biopsy done back in June. I seriously doubt that I want to undertake that risk to have what amounts to non-emergency elective surgery.

This is just such a bloomin nuisance....I know you know what I mean!

Beth Fibrotic NSIP 06/06

Don't try to explain it, just nod your head.

Breathe in, breathe out. Move on. J. Buffett

Cold Air Mask

Beth,

Have you used your cold air mask yet? Did anyone else get one? I have been using mine, especially today....20 degrees outside. It is so nice. Warms the air up and keeps me from coughing my lungs out.

However, all this cold weather apparel is a little much to deal with. Today, I got all bundled up and started out the door. Well, I realized soon enough that I was still tethered to the concentrator. So, to change from that to my portable.... I had to take off my gloves, unzip my coat (tubing zipped up inside), unwrap my scarf, take off my mask, untangle it and my glasses from the tubing.....switch tubing, put everything back on .... and then I could go! Aaaargh!

The mask looks like a pigs nose, don't you think?

Hugs, Joyce PF 1997 Bronchiectasis 2004 INDIANA

Joy

(IPF 3/06)

Today is a gift for each

of us. Enjoy it.

Have a burning question? Go to Yahoo! Answers and get answers from real people who know.

[Guest guest]

Beth

Prior to going on prednisone, i had a lot of stress incontinence

whenever i coughed or sneezed. So much that I bought Poise pads.

They really helped. Once the prednisone calmed down all of my

symptoms, the stress incontinence went away.

Friday was a very bad breathing day for me in Philadelphia. I was

tired most of the day. This was the first time that I went out to

the car at lunchtime to get my o2. The first time that I used it in

a school. Unfortunately, it's a helios portable with liquid o2. So

after a couple of minutes, it was empty.

Anyway, I think the breathing/tired problem was due to the warm,

humid weather and possibly a change in the barometer.

Joyce ipf 3/06

>

> Joyce,

> Mine just came yesterday and since it's been over 70 degrees the

last couple of days I've not had an opportunity to use it yet. Cold

front coming through right this minute though....winds are howling

outside and it's pouring rain. I will undoubtedly be able to use it

shortly. It does look a bit like a pig snout doesn't it? They

should make it pink! I'm glad to hear it helps. The way the cold

takes my breath away is completely unnerving.

>

> I'm really whooped tonight, don't know why just very, very tired.

My aunt wanted me to go to the movies but I took a pass which I hate

to do but there's no point in paying for a movie when I know I'll go

to sleep.

>

> This may be a weird question but does anyone else have trouble with

stress incontinence? I know it's from the coughing, it's just so

frustrating to not be able to control such basic function like peeing

for cryin out loud. I can't remember anyone else mentioning

this...is it just me?

>

> Beth Fibrotic NSIP 06/06

>

> Don't try to explain it, just nod your head.

> Breathe in, breathe out. Move on. J. Buffett

>

>

>

> Cold Air Mask

>

> Beth,

> Have you used your cold air mask yet? Did anyone else get one? I

have been using mine, especially today....20 degrees outside. It is

so nice. Warms the air up and keeps me from coughing my lungs out.

> However, all this cold weather apparel is a little much to deal

with. Today, I got all bundled up and started out the door. Well, I

realized soon enough that I was still tethered to the concentrator.

So, to change from that to my portable.... I had to take off my

gloves, unzip my coat (tubing zipped up inside), unwrap my scarf,

take off my mask, untangle it and my glasses from the

tubing.....switch tubing, put everything back on .... and then I

could go! Aaaargh!

> The mask looks like a pigs nose, don't you think?

> Hugs, Joyce PF 1997 Bronchiectasis 2004 INDIANA

>

[Guest guest]

Hi Beth, Yup, same problem but unfortunately the prenisone did not help me with that issue. I just wear a pad and bring a change in my purse if I am out and about. The stress incontinence is always just a drip or two but enough to make it quite uncomfortable so I just use them all the time.So dont feel too bad as its not just you. I'm just thankful its not the other end I have to worry about. lol Louise/ipf/96/Ca./Joyce wrote:

BethPrior to going on prednisone, i had a lot of stress incontinence whenever i coughed or sneezed. So much that I bought Poise pads. They really helped. Once the prednisone calmed down all of my symptoms, the stress incontinence went away. Friday was a very bad breathing day for me in Philadelphia. I was tired most of the day. This was the first time that I went out to the car at lunchtime to get my o2. The first time that I used it in a school. Unfortunately, it's a helios portable with liquid o2. So after a couple of minutes, it was empty. Anyway, I think the breathing/tired problem was due to the warm, humid weather and possibly a change in the barometer. Joyce ipf 3/06>> Joyce,> Mine just came yesterday and since it's been over 70 degrees the

last couple of days I've not had an opportunity to use it yet. Cold front coming through right this minute though....winds are howling outside and it's pouring rain. I will undoubtedly be able to use it shortly. It does look a bit like a pig snout doesn't it? They should make it pink! I'm glad to hear it helps. The way the cold takes my breath away is completely unnerving.> > I'm really whooped tonight, don't know why just very, very tired. My aunt wanted me to go to the movies but I took a pass which I hate to do but there's no point in paying for a movie when I know I'll go to sleep.> > This may be a weird question but does anyone else have trouble with stress incontinence? I know it's from the coughing, it's just so frustrating to not be able to control such basic function like peeing for cryin out loud. I can't remember anyone else mentioning this...is it just me?> > Beth

Fibrotic NSIP 06/06> > Don't try to explain it, just nod your head.> Breathe in, breathe out. Move on. J. Buffett> > > > Cold Air Mask> > Beth, > Have you used your cold air mask yet? Did anyone else get one? I have been using mine, especially today....20 degrees outside. It is so nice. Warms the air up and keeps me from coughing my lungs out. > However, all this cold weather apparel is a little much to deal with. Today, I got all bundled up and started out the door. Well, I realized soon enough that I was still tethered to the concentrator. So, to change from that to my portable.... I had to take off my

gloves, unzip my coat (tubing zipped up inside), unwrap my scarf, take off my mask, untangle it and my glasses from the tubing.....switch tubing, put everything back on .... and then I could go! Aaaargh! > The mask looks like a pigs nose, don't you think?> Hugs, Joyce PF 1997 Bronchiectasis 2004 INDIANA>

Have a burning question? Go to Yahoo! Answers and get answers from real people who know.

[Guest guest]

Joyce,

I'm using the Poise pads right now and of course they do help keep my dry. My experience is similar to yours in that when I was on the highest dosage of prednisone I had virtually no coughing at all and of course no stress incontinence. Now that I'm coming off the pred, the cough is back and so is everything else. It's probably all made worse by the 20mg of Lasix I take every day. LOL Oh well, it's not really that big a deal, just a nuisance.

Here in NY I had a very tired day Friday also I think it was the change in the weather. A friend from pulmonary rehab who has COPD told me that his worst days are the days the weather changes. Something about the change in barometric pressure makes the symptoms worse. I started watching myself after he mentioned that and I find the same thing. As the cold front was approaching and passing through yesterday, I coughed more, and was very fatigued all day. I do feel better this morning.

I'm off for my bi-weekly visit with the vampire.... Well not really just having my bi-weekly bloodwork drawn. Have a good day everybody!

Beth Fibrotic NSIP 06/06

Don't try to explain it, just nod your head.

Breathe in, breathe out. Move on. J. Buffett

Cold Air Mask> > Beth, > Have you used your cold air mask yet? Did anyone else get one? I have been using mine, especially today....20 degrees outside. It is so nice. Warms the air up and keeps me from coughing my lungs out. > However, all this cold weather apparel is a little much to deal with. Today, I got all bundled up and started out the door. Well, I realized soon enough that I was still tethered to the concentrator. So, to change from that

to my portable.... I had to take off my gloves, unzip my coat (tubing zipped up inside), unwrap my scarf, take off my mask, untangle it and my glasses from the tubing.....switch tubing, put everything back on .... and then I could go! Aaaargh! > The mask looks like a pigs nose, don't you think?> Hugs, Joyce PF 1997 Bronchiectasis 2004 INDIANA>

[Guest guest]

Hi ! I have to welcome you to Oregon. I'm north of Salem about 25 miles. As you can see, it's brrrrrr cold here right now but I think you brought some sunshine with you.

How did the move go???

Take care!

Love, Sher ipf 5-06

"Don't worry about tomorrow, God is already there"

Cold Air Mask

Beth,

Have you used your cold air mask yet? Did anyone else get one? I have been using mine, especially today....20 degrees outside. It is so nice. Warms the air up and keeps me from coughing my lungs out.

However, all this cold weather apparel is a little much to deal with. Today, I got all bundled up and started out the door. Well, I realized soon enough that I was still tethered to the concentrator. So, to change from that to my portable.... I had to take off my gloves, unzip my coat (tubing zipped up inside), unwrap my scarf, take off my mask, untangle it and my glasses from the tubing.....switch tubing, put everything back on .... and then I could ! go! Aaaargh!

The mask looks like a pigs nose, don't you think?

Hugs, Joyce PF 1997 Bronchiectasis 2004 INDIANA

Joy

(IPF 3/06)

Today is a gift for each

of us. Enjoy it.

Have a burning question? Go to Yahoo! Answers and get answers from real people who know.

Cheap Talk? Check out Yahoo! Messenger's low PC-to-Phone call rates.

[Guest guest]

Ahhhh Peggy, me poor heart breaketh for thee! AC! ye gads!

Sher

"Don't worry about tomorrow, God is already there"

Re: Cold Air Mask

I knew there was a really good reason I stay in the South..lol..Sorry you've had a rough time getting out and about. I had to turn the AC on in my car when I left the store today... almost more than I could do..hee hee..Love and Prayers, Peggy 9/04 ipf Florida

Beth, Have you used your cold air mask yet? Did anyone else get one? I have been using mine, especially today....20 degrees outside. It is so nice. Warms the air up and keeps me from coughing my lungs out. However, all this cold weather apparel is a little much to deal with. Today, I got all bundled up and started out the door. Well, I realized soon enough that I was still tethered to the concentrator. So, to change from that to my portable....I had to take off my gloves, unzip my coat (tubing zipped up inside), unwrap my scarf, take off my mask, untangle it and my glasses from the tubing.....switch tubing, put everything back on .... and then I could go! Aaaargh! The mask lo

[Guest guest]

This board is wonderful! From pets to "pads" and from gasping to asking! What a group.

Love ya all. Sher ipf 5-06

"Don't worry about tomorrow, God is already there"

Cold Air Mask> > Beth, > Have you used your cold air mask yet? Did anyone else get one? I have been using mine, especially today....20 degrees outside. It is so nice. Warms the air up and keeps me from coughing my lungs out. > However, all this cold weather apparel is a little much to deal with. Today, I got all bundled up and started out the door. Well, I realized soon enough that I was still tethered to the concentrator. So, to change from tha! t to my portable.... I had to take off my gloves, unzip my coat (tubing zipped up inside), unwrap my scarf, take off my mask, untangle it and my glasses from the tubing.....switch tubing, put everything back on .... and then I could go! Aaaargh! > The mask looks like a pigs nose, don't you think?> Hugs, Joyce PF 1997 Bronchiectasis 2004 INDIANA>

[Guest guest]

Hi Beth, My name is Lillian, and I joined your group months ago, I havn't posted anything because I really didn't have anything to contribute. I do read your e-mails and I think everyone is wonderful and have helped me so much. Beth you told me that I should have a second opinion and to go to Columbia Presbyterian to see Dr. Simonelli. I think I'm ready now and I do need his telephone #. I went to my pulmonary doctor tuesday and had the worst visit ever, I will never go back to him again. I do want to stay with this group and I think I can just switch over to another doctor within the group, hopefully. My doctor was behind with all his scheduling and he had a meeting to go to and when I told him I had a lot of questions he wasn't too happy. The reason I had questions is on my last HRCT he said he didn't see

fibrosis, but he said my emphysema was very bad. I am so confused in 2005 I had a HRCT and he said I had IPF. He said that there are different types of fibrosis and the prednisone helped me. Everytime I tried to question him he told me to be quiet and said I listen to people and read too much. I have no idea what I have and what I don't have. I am not on oxygen and I'm on 7 1/2 ml of prednisone. My breathing is not good, which I tried to tell him. When I make the bed I get out of breath and have to take breakes also walking to the car I get out of breath. I think the weather has a lot to do with me getting out of breath, it has been very damp. Thanks Beth for all of you help. Lillian copd/01 IPF 3/05 Sher K Bauman wrote: This board is wonderful! From pets to "pads" and from gasping to asking! What a group. Love ya all. Sher ipf 5-06 "Don't worry about tomorrow, God is already there" Cold Air Mask> > Beth, > Have you used your cold air mask yet? Did anyone else get one? I have been using mine, especially today....20 degrees outside. It is so nice. Warms the air up and keeps me from coughing my lungs out. >

However, all this cold weather apparel is a little much to deal with. Today, I got all bundled up and started out the door. Well, I realized soon enough that I was still tethered to the concentrator. So, to change from tha! t to my portable.... I had to take off my gloves, unzip my coat (tubing zipped up inside), unwrap my scarf, take off my mask, untangle it and my glasses from the tubing.....switch tubing, put everything back on .... and then I could go! Aaaargh! > The mask looks like a pigs nose, don't you think?> Hugs, Joyce PF 1997 Bronchiectasis 2004 INDIANA> __________________________________________________

[Guest guest]

Note: forwarded message attached.

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Hi Beth, My name is Lillian, and I joined your group months ago, I havn't posted anything because I really didn't have anything to contribute. I do read your e-mails and I think everyone is wonderful and have helped me so much. Beth you told me that I should have a second opinion and to go to Columbia Presbyterian to see Dr. Simonelli. I think I'm ready now and I do need his telephone #. I went to my pulmonary doctor tuesday and had the worst visit ever, I will never go back to him again. I do want to stay with this group and I think I can just switch over to another doctor within the group, hopefully. My doctor was behind with all his scheduling and he had a meeting to go to and when I told him I had a lot of questions he wasn't too happy. The reason I had questions is on my last HRCT he said he didn't see

fibrosis, but he said my emphysema was very bad. I am so confused in 2005 I had a HRCT and he said I had IPF. He said that there are different types of fibrosis and the prednisone helped me. Everytime I tried to question him he told me to be quiet and said I listen to people and read too much. I have no idea what I have and what I don't have. I am not on oxygen and I'm on 7 1/2 ml of prednisone. My breathing is not good, which I tried to tell him. When I make the bed I get out of breath and have to take breakes also walking to the car I get out of breath. I think the weather has a lot to do with me getting out of breath, it has been very damp. Thanks Beth for all of you help. Lillian copd/01 IPF 3/05 Sher K Bauman wrote: This board is wonderful! From pets to "pads" and from gasping to asking! What a group. Love ya all. Sher ipf 5-06 "Don't worry about tomorrow, God is already there" Cold Air Mask> > Beth, > Have you used your cold air mask yet? Did anyone else get one? I have been using mine, especially today....20 degrees outside. It is so nice. Warms the air up and keeps me from coughing my lungs out. >

However, all this cold weather apparel is a little much to deal with. Today, I got all bundled up and started out the door. Well, I realized soon enough that I was still tethered to the concentrator. So, to change from tha! t to my portable.... I had to take off my gloves, unzip my coat (tubing zipped up inside), unwrap my scarf, take off my mask, untangle it and my glasses from the tubing.....switch tubing, put everything back on .... and then I could go! Aaaargh! > The mask looks like a pigs nose, don't you think?> Hugs, Joyce PF 1997 Bronchiectasis 2004 INDIANA> __________________________________________________

[Guest guest]

Lillian,

I remember you well, it wasn't all that long ago. I'm glad that you continued to read the board and gather information. This board and all the folks on here are one of the good things this illness has brought me.

I'm sorry you are having such a trying time with your doctor. For him to say you "listen to people and read too much" is very disturbing. I would have alot of trouble with that also. I hope you can switch easily to another doc in the group.

Here's Dr. Simonelli's contact information:

F. Simonelli, MD, PhD, FCCP

Pulmonary Medicine

Columbia University Medical Center

161 Fort Washington Ave

NY, NY 10032

(fax)

I like him alot. I found him to be very knowledgeable, but also compassionate and kind. If you decide to see him, I don't think you will regret it.

Lillian, if I remember correctly I offered to help you get in to the city to see him if you need assistance. That offer still goes, so please don't hesitate to contact me. I have an appointment to see Dr. Simonelli on January 11 at noon.

Beth Fibrotic NSIP 06/06

Don't try to explain it, just nod your head.

Breathe in, breathe out. Move on. J. Buffett

Cold Air Mask> > Beth, > Have you used your cold air mask yet? Did anyone else get one? I have been using mine, especially today....20 degrees outside. It is so nice. Warms the air up and keeps me from coughing my lungs out. > However, all this cold weather apparel is a little much to deal with. Today, I got all bundled up and started out the door. Well, I realized soon enough that I was still tethered to the concentrator. So, to change from tha!

t to my portable.... I had to take off my gloves, unzip my coat (tubing zipped up inside), unwrap my scarf, take off my mask, untangle it and my glasses from the tubing.....switch tubing, put everything back on .... and then I could go! Aaaargh! > The mask looks like a pigs nose, don't you think?> Hugs, Joyce PF 1997 Bronchiectasis 2004 INDIANA>

____________ _________ _________ _________ _________ __

[Guest guest]

Lillian,

I have been through doc visits just like the one you are describing. If you would have looked closely at his eyes you would have seen $$$$$$$. 'Doctors' such as this one don't want patients who are intelligent enough to ask questions because it takes up thier time....and time is money, after all. I have had doctors (whom I no longer see) who said the exact thing to me about researching and reading. Aaaargh!

It is your life and his pocketbook. You are making a wise choice by changing doctors!

Hugs, Joyce PF 1997 Bronchiectasis 2004 INDIANA > >> > Joyce,> > Mine just came yesterday and since it's bee! n over 70 degrees the > last couple of days I've not had an opportunity to use it yet. Cold > front coming through right this minute though....winds are howling > outside and it's pouring rain. I will undoubtedly be able to use it > shortly. It does look a bit like a pig snout doesn't it? They > should make it pink! I'm glad to hear it helps. The way the cold > takes my breath away is completely unnerving.> > > > I'm really whooped tonight, don't know why just very, very tired. > My aunt wanted me to go to the movies but I took a pass which I hate > to do but there's no point in paying for a movie when I know I'll go > to sleep.> > > > This may be a weird question but does anyone else have trouble with > stress incontinence? I know it's from the coughing, it's just so > frustrating to not be able to control such basic function like peeing > for cryin out loud. I can't remember anyone else mentioning > this...is it just me?> > > > Beth Fibrotic NSIP 06/06> > > > Don't try to explain it, just nod your head.> > Breathe in, breathe out. Move on. J. Buffett> > > > > > > > Cold Air Mask> > > > Beth, > > Have you used your cold air mask yet? Did anyone else get one? I > have been using mine, especially today....20 degrees outside. It is > so nice. Warms the air up and keeps me from coughing my lungs out. > > However, all this cold weather apparel is a little much to deal > with. Today, I got all bundled up and started out the door. Well, I > realized soon enough that I was still tethered to the concentrator. > So, to change from tha! t to my portable.... I had to take off my > gloves, unzip my coat (tubing zipped up inside), unwrap my scarf, > take off my mask, untangle it and my glasses from the > tubing.....switch tubing, put everything back on .... and then I > could go! Aaaargh! > > The mask looks like a pigs nose, don't you think?> > Hugs, Joyce PF 1997 Bronchiectasis 2004 INDIANA> >> > > > > > > > > > > > > > __________________________________________________>

[Guest guest]

Hi Sher, I am in Portland right now and will be in Salem next week. IT IS COLD HERE!!!! The move went okay. It was more emotional than I thought giving up my big beautiful house-memories, memories, memories and truthfully it was physically harder than I thought because I had collected so much junk over the years! I do love living by the beach though and with my much smaller place ( I went from 4 bedrooms and 3 baths to 2 bedrooms, 1 bath) I have more money to visit my kids. Take care in this cold-Sher K Bauman wrote: Hi ! I have to welcome you to Oregon. I'm north of Salem about 25 miles. As you can see, it's brrrrrr cold here right now but I think you brought some sunshine with you. How did the move go??? Take care! Love, Sher ipf 5-06 "Don't worry about tomorrow, God is already there" Cold Air Mask Beth, Have you used your cold air mask yet? Did anyone else get one? I have been using mine, especially today....20 degrees outside. It is so nice. Warms the air up and keeps me from coughing my lungs out. However, all this cold weather apparel is a little much to deal with. Today, I got all bundled up and started out the door. Well, I realized soon enough that I was still tethered to the concentrator. So, to change from that to my portable.... I had to take off my gloves, unzip my coat (tubing zipped up inside), unwrap my scarf, take off my mask, untangle it and my glasses from the tubing.....switch tubing, put

everything back on .... and then I could ! go! Aaaargh! The mask looks like a pigs nose, don't you think? Hugs, Joyce PF 1997 Bronchiectasis 2004 INDIANA Joy (IPF 3/06) Today is a gift for each of us. Enjoy it. Have a burning question? Go to Yahoo! Answers and get answers from real people who know. Cheap Talk? Check out Yahoo! Messenger's low PC-to-Phone call rates.

Everyone is raving about the all-new Yahoo! Mail beta.

[Guest guest]

Beth & Joyce, Thank you so much for all your info and Beth thanks for the offer you are so kind. My daughter who lives in PA offered to take me. When I ask my doctors office for a copy of my files - do I take all - I go back to 2001? I realize I will take my CT's. What exactly do I need to bring with me? Thanks again. Lillian copd 01 / IPF 05 Beth wrote: Lillian, I remember you well, it wasn't all that long ago. I'm glad that you continued to read the board and gather information. This board and all the folks on here are one of the good things this illness has brought me. I'm sorry you are having such a trying time with your doctor. For him to say you "listen to people and read too much" is very disturbing. I would have alot of trouble with that also. I hope you can switch easily to another doc in the group. Here's Dr. Simonelli's contact information: F. Simonelli, MD, PhD, FCCP Pulmonary Medicine Columbia University Medical Center 161 Fort Washington Ave NY, NY 10032 (fax) I like him alot. I found him to be very knowledgeable, but also compassionate and kind. If you decide to see him, I don't think you will regret it. Lillian, if I remember correctly I offered to help you get in to the city to see him if you need assistance. That offer still goes, so please don't hesitate to contact me. I have an appointment to see Dr. Simonelli on January 11 at noon. Beth Fibrotic NSIP 06/06 Don't try to explain it, just nod your

head. Breathe in, breathe out. Move on. J. Buffett Cold Air Mask> > Beth, > Have you used your cold air mask yet? Did anyone else get one? I have been using mine, especially today....20 degrees outside. It is so nice. Warms the air up and keeps me from coughing my lungs out. > However, all this cold weather apparel is a little much to deal with. Today, I got all bundled up and started out the door. Well, I realized soon enough that I was still tethered to the concentrator. So, to change from tha! t to my portable.... I had to take off my gloves, unzip my coat (tubing zipped up inside), unwrap my scarf, take off my mask, untangle it and my glasses from the tubing.....switch tubing, put everything back on .... and then I could go! Aaaargh! > The mask looks like a pigs nose, don't you think?> Hugs, Joyce PF 1997 Bronchiectasis 2004

INDIANA> ____________ _________ _________ _________ _________ __

[Guest guest]

Beth & Joyce, Thank you so much for all the info and Beth thanks for the offer you are so kind. My daughter who lives in PA offered to take me. When I ask my doctors office for my files - do I take all - I go back to 2001? I realize I will take my CT's. What exactly do I need to bring with me? Thanks, Lillian copd 01 / IPF 05 Beth wrote: Lillian, I remember you well, it wasn't all that long ago. I'm glad that you continued to read the board and gather information. This board and all the folks on here are one of the good things this illness has brought me. I'm sorry you are having such a trying time with your doctor. For him to say you "listen to people and read too much" is very disturbing. I would have alot of trouble with that also. I hope you can switch easily to another doc in the group. Here's Dr. Simonelli's contact information: F. Simonelli, MD, PhD, FCCP Pulmonary Medicine Columbia University Medical Center 161 Fort Washington Ave NY, NY 10032

(fax) I like him alot. I found him to be very knowledgeable, but also compassionate and kind. If you decide to see him, I don't think you will regret it. Lillian, if I remember correctly I offered to help you get in to the city to see him if you need assistance. That offer still goes, so please don't hesitate to contact me. I have an appointment to see Dr. Simonelli on January 11 at noon. Beth Fibrotic NSIP 06/06 Don't try to explain it, just nod your head. Breathe in, breathe out. Move on. J. Buffett Cold Air Mask> > Beth, > Have you used your cold air mask yet? Did anyone else get one? I have been using mine, especially today....20 degrees outside. It is so nice. Warms the air up and keeps me from coughing my lungs out. > However, all this cold weather apparel is a little much to deal with. Today, I got all bundled up and started out the door. Well, I realized soon enough that I was still tethered to the concentrator. So, to change from tha! t to my portable.... I had to take off my gloves, unzip my coat (tubing zipped up inside), unwrap my scarf, take off my mask, untangle it and my glasses from the tubing.....switch tubing, put everything back on .... and then I could go! Aaaargh! > The mask looks like a pigs nose, don't you think?> Hugs, Joyce PF 1997 Bronchiectasis 2004 INDIANA> ____________ _________ _________ _________ _________ __

[Guest guest]

Lillian,

Ask your doctors office for a copy of everything. You should have a copy of everything for yourself anyway. At my first appointment Dr. Simonelli wanted CT scans, Pulmonary Function test reports, if you've had a biopsy, he'll want to see the actual slide so Columbia Pres' pathology dept can look at it themselves. When you call for the appointment they will tell you exactly what you need to bring.

Most importantly, start jotting down questions that you think of. I go with a notebook to every appointment with a ton of questions. He doesn't seem to be bothered by it in the least and always takes time to make sure he's answered every concern or question that I have.

Let me know how it goes!

Beth Fibrotic NSIP 06/06

Don't try to explain it, just nod your head.

Breathe in, breathe out. Move on. J. Buffett

Cold Air Mask> > Beth, > Have you used your cold air mask yet? Did anyone else get one? I have been using mine, especially today....20 degrees outside. It is so nice. Warms the air up and keeps me from coughing my lungs out. > However, all this cold weather apparel is a little much to deal with. Today, I got all bundled up and started out the door. Well, I realized soon enough that I was still tethered to the concentrator. So, to change from tha!

t to my portable.... I had to take off my gloves, unzip my coat (tubing zipped up inside), unwrap my scarf, take off my mask, untangle it and my glasses from the tubing.....switch tubing, put everything back on .... and then I could go! Aaaargh! > The mask looks like a pigs nose, don't you think?> Hugs, Joyce PF 1997 Bronchiectasis 2004 INDIANA>

____________ _________ _________ _________ _________ __

[Guest guest]

...I can't remember where you "settled"....I don't think it's here in Oregon. Where do you go from here? I know you're visiting kids.

Sher

"Don't worry about tomorrow, God is already there"

Cold Air Mask

Beth,

Have you used your cold air mask yet? Did anyone else get one? I have been using mine, especially today....20 degrees outside. It is so nice. Warms the air up and keeps me from coughing my lungs out.

However, all this cold weather apparel is a little much to deal with. Today, I got all bundled up and started out the door. Well, I realized soon enough that I was still tethered to the concentrator. So, to change from that to my portable.... I had to take off my gloves, unzip my coat (tubing zipped up inside), unwrap my scarf, take off my mask, untangle it and my glasses from the tubing.....switch ! tubing, put everything back on .... and then I could ! go! Aaaargh!

The mask looks like a pigs nose, don't you think?

Hugs, Joyce PF 1997 Bronchiectasis 2004 INDIANA

Joy

(IPF 3/06)

Today is a gift for each

of us. Enjoy it.

Have a burning question? Go to Yahoo! Answers and get answers from real people who know. !

Cheap Talk? Check out Yahoo! Messenger's low PC-to-Phone call rates.

Everyone is raving about the all-new Yahoo! Mail beta.

[Guest guest]

Hi Sher, I moved to Carlsbad, Calif. It's about 20 minutes north of San Diego. 3 of my kids live there, 2 live in Oregon and 1 in South Dakota. I am trying to visit the out of staters every three months. So far I have been able to and I am enjoying the litttle ones so much! Sher K Bauman wrote: ...I can't remember where you "settled"....I don't think it's here in Oregon. Where do you go

from here? I know you're visiting kids. Sher "Don't worry about tomorrow, God is already there" Cold Air Mask Beth, Have you used your cold

air mask yet? Did anyone else get one? I have been using mine, especially today....20 degrees outside. It is so nice. Warms the air up and keeps me from coughing my lungs out. However, all this cold weather apparel is a little much to deal with. Today, I got all bundled up and started out the door. Well, I realized soon enough that I was still tethered to the concentrator. So, to change from that to my portable.... I had to take off my gloves, unzip my coat (tubing zipped up inside), unwrap my scarf, take off my mask, untangle it and my glasses from the tubing.....switch ! tubing, put everything back on .... and then I could ! go! Aaaargh! The mask looks like a pigs nose, don't you think? Hugs, Joyce PF 1997 Bronchiectasis

2004 INDIANA Joy (IPF 3/06) Today is a gift for each of us. Enjoy it. Have a burning question? Go to Yahoo! Answers and get answers from real people who know. ! Cheap Talk? Check out Yahoo! Messenger's low PC-to-Phone

call rates. Everyone is raving about the all-new Yahoo! Mail beta.

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