Re: Breathing and allergies and U. of Penn

[Guest guest]

Bill

which docs are you seeing at Penn?

I see Kreider and Ahya

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09 inactive 4/09

www.transplantfund.org---

Subject: Breathing and allergies and U. of PennTo: Breathe-Support Date: Thursday, April 16, 2009, 6:03 PM

Hey, Group...

My breathing has been getting worse and worse over the past few weeks to the point I was afraid the downshill slide had begun. Then I found allergy meds! After some experimentation, I'm now taking prescription Allegra D in conjunction with Nasonex spray and this week I'm breathing better than I have in a very long time. I didn't realize my allergies were so bad. I'm in NE PA and everybody is talking about how bad theirs are this year.

Also, I made my first visit to the Univ. of Pennsylvania Lung Center yesterday and it looks like I'll make many more. The high-rez CT scan was enough to see the IPF, no surgical peeking necessary. Good news was that they're now doing some transplants up to age 70 in some cases. I'm 66 and we'll be talking further. And I really don't like Philly traffic!

As an aside, my heart doc told me to cut the cholesterol and the sugar and the cheese etc etc... and I looked at him and said "Or what? I'll get sick?" And he said "Oh, yeah, well, I had to say that." We laughed.

Bill IPF Oct '08

NE PA

Great deals on Dell's most popular laptops - Starting at $479

[Guest guest]

-I'm very naive about my PF disease. How does one know when they have started

the downhill slide? I'm on oxygen at night and about every 2 months my lungs

get really bad and I have to use oxygen during the days also. I have COPD along

with the PF. My catscans which my PF Doctor does every 3 months shows a bunch

of little-looking grapes. The clusters are on the bottom, tops and sides

of my lungs. I asked him how long approximately would I live and he said " It's

up to you! " in a snotty way. I went home thinking, what an ass he is. So

again, how does one know when they are on the " downhill side " ? Ginny M. from

Richmond, VA

-- In Breathe-Support , Paradis3@... wrote:

>

> Hey, Group...

> My breathing has been getting worse and worse over the past few weeks

> to the point I was afraid the downshill slide had begun. Then I found

> allergy meds! After some experimentation, I'm now taking prescription

Allegra D

> in conjunction with Nasonex spray and this week I'm breathing better than

> I have in a very long time. I didn't realize my allergies were so bad.

> I'm in NE PA and everybody is talking about how bad theirs are this year.

> Also, I made my first visit to the Univ. of Pennsylvania Lung Center

> yesterday and it looks like I'll make many more. The high-rez CT scan was

> enough to see the IPF, no surgical peeking necessary. Good news was that

> they're now doing some transplants up to age 70 in some cases. I'm 66 and

> we'll be talking further. And I really don't like Philly traffic!

> As an aside, my heart doc told me to cut the cholesterol and the sugar

> and the cheese etc etc... and I looked at him and said " Or what? I'll get

> sick? " And he said " Oh, yeah, well, I had to say that. " We laughed.

>

> Bill IPF Oct '08

> NE PA

> **************Great deals on Dell’s most popular laptops †" Starting at

> $479

>

(http://pr.atwola.com/promoclk/100126575x1220029082x1201385915/aol?redir=http:%2\

F%2Fad.doubleclick.net%2Fclk%3B213969145%3B35701480%3Bh)

>

[Guest guest]

-I'm very naive about my PF disease. How does one know when they have started

the downhill slide? I'm on oxygen at night and about every 2 months my lungs

get really bad and I have to use oxygen during the days also. I have COPD along

with the PF. My catscans which my PF Doctor does every 3 months shows a bunch

of little-looking grapes. The clusters are on the bottom, tops and sides

of my lungs. I asked him how long approximately would I live and he said " It's

up to you! " in a snotty way. I went home thinking, what an ass he is. So

again, how does one know when they are on the " downhill side " ? Ginny M. from

Richmond, VA

-- In Breathe-Support , Paradis3@... wrote:

>

> Hey, Group...

> My breathing has been getting worse and worse over the past few weeks

> to the point I was afraid the downshill slide had begun. Then I found

> allergy meds! After some experimentation, I'm now taking prescription

Allegra D

> in conjunction with Nasonex spray and this week I'm breathing better than

> I have in a very long time. I didn't realize my allergies were so bad.

> I'm in NE PA and everybody is talking about how bad theirs are this year.

> Also, I made my first visit to the Univ. of Pennsylvania Lung Center

> yesterday and it looks like I'll make many more. The high-rez CT scan was

> enough to see the IPF, no surgical peeking necessary. Good news was that

> they're now doing some transplants up to age 70 in some cases. I'm 66 and

> we'll be talking further. And I really don't like Philly traffic!

> As an aside, my heart doc told me to cut the cholesterol and the sugar

> and the cheese etc etc... and I looked at him and said " Or what? I'll get

> sick? " And he said " Oh, yeah, well, I had to say that. " We laughed.

>

> Bill IPF Oct '08

> NE PA

> **************Great deals on Dell’s most popular laptops †" Starting at

> $479

>

(http://pr.atwola.com/promoclk/100126575x1220029082x1201385915/aol?redir=http:%2\

F%2Fad.doubleclick.net%2Fclk%3B213969145%3B35701480%3Bh)

>

[Guest guest]

-I'm very naive about my PF disease. How does one know when they have started

the downhill slide? I'm on oxygen at night and about every 2 months my lungs

get really bad and I have to use oxygen during the days also. I have COPD along

with the PF. My catscans which my PF Doctor does every 3 months shows a bunch

of little-looking grapes. The clusters are on the bottom, tops and sides

of my lungs. I asked him how long approximately would I live and he said " It's

up to you! " in a snotty way. I went home thinking, what an ass he is. So

again, how does one know when they are on the " downhill side " ? Ginny M. from

Richmond, VA

-- In Breathe-Support , Paradis3@... wrote:

>

> Hey, Group...

> My breathing has been getting worse and worse over the past few weeks

> to the point I was afraid the downshill slide had begun. Then I found

> allergy meds! After some experimentation, I'm now taking prescription

Allegra D

> in conjunction with Nasonex spray and this week I'm breathing better than

> I have in a very long time. I didn't realize my allergies were so bad.

> I'm in NE PA and everybody is talking about how bad theirs are this year.

> Also, I made my first visit to the Univ. of Pennsylvania Lung Center

> yesterday and it looks like I'll make many more. The high-rez CT scan was

> enough to see the IPF, no surgical peeking necessary. Good news was that

> they're now doing some transplants up to age 70 in some cases. I'm 66 and

> we'll be talking further. And I really don't like Philly traffic!

> As an aside, my heart doc told me to cut the cholesterol and the sugar

> and the cheese etc etc... and I looked at him and said " Or what? I'll get

> sick? " And he said " Oh, yeah, well, I had to say that. " We laughed.

>

> Bill IPF Oct '08

> NE PA

> **************Great deals on Dell’s most popular laptops †" Starting at

> $479

>

(http://pr.atwola.com/promoclk/100126575x1220029082x1201385915/aol?redir=http:%2\

F%2Fad.doubleclick.net%2Fclk%3B213969145%3B35701480%3Bh)

>

[Guest guest]

Ginny, Hi My name is Peggy. I am 66 and have IPF. I am glad you are asking questions of us. I'll see if I can help.Our Lou is on 20L. yes, leaders. She advanced really quickly. She and I were on the same 6 to 8L then allof a sudden she needed more 02. You can tell when you are having a down slide by your breathing. The main thing you needis an Oximeter.. you can check your oxygen saturation while doing different things and report to your Doc when you feelthe need for more 02. Most of us here that has been on the board for a while have one.This disease is different for each of us but the same....if that makes since. Some react differently to lack of 02 and somemeds. The best thing I can advise for you to do is keep a copy of all your records. Be sure you have a Doc you can talk to and will explain every question you have. We are here for any questions or venting. God Bless.Love & Prayers, PeggyFlorida,  IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly."  -I'm very naive about my PF disease. How does one know when they have started the downhill slide? I'm on oxygen at night and about every 2 months my lungs get really bad and I have to use oxygen during the days also. I have COPD along with the PF. My catscans which my PF Doctor does every 3 months shows a bunch of little-looking grapes. The clusters are on the bottom, tops and sidesof my lungs. I asked him how long approximately would I live and he said "It's up to you!" in a snotty way. I went home thinking, what an ass he is. So again, how does one know when they are on the "downhill side"? Ginny M. from Richmond, VA-- In Breathe-Support , Paradis3@... wrote:>> Hey, Group...> My breathing has been getting worse and worse over the past few weeks > to the point I was afraid the downshill slide had begun. Then I found > allergy meds! After some experimentation, I'm now taking prescription Allegra D > in conjunction with Nasonex spray and this week I'm breathing better than > I have in a very long time. I didn't realize my allergies were so bad. > I'm in NE PA and everybody is talking about how bad theirs are this year.> Also, I made my first visit to the Univ. of Pennsylvania Lung Center > yesterday and it looks like I'll make many more. The high-rez CT scan was > enough to see the IPF, no surgical peeking necessary. Good news was that > they're now doing some transplants up to age 70 in some cases. I'm 66 and > we'll be talking further. And I really don't like Philly traffic!> As an aside, my heart doc told me to cut the cholesterol and the sugar > and the cheese etc etc... and I looked at him and said "Or what? I'll get > sick?" And he said "Oh, yeah, well, I had to say that." We laughed.> > Bill IPF Oct '08> NE PA> **************Great deals on Dell’s most popular laptops â€" Starting at > $479 > (http://pr.atwola.com/promoclk/100126575x1220029082x1201385915/aol?redir=http:%2F%2Fad.doubleclick.net%2Fclk%3B213969145%3B35701480%3Bh)>

[Guest guest]

Ginny, Hi My name is Peggy. I am 66 and have IPF. I am glad you are asking questions of us. I'll see if I can help.Our Lou is on 20L. yes, leaders. She advanced really quickly. She and I were on the same 6 to 8L then allof a sudden she needed more 02. You can tell when you are having a down slide by your breathing. The main thing you needis an Oximeter.. you can check your oxygen saturation while doing different things and report to your Doc when you feelthe need for more 02. Most of us here that has been on the board for a while have one.This disease is different for each of us but the same....if that makes since. Some react differently to lack of 02 and somemeds. The best thing I can advise for you to do is keep a copy of all your records. Be sure you have a Doc you can talk to and will explain every question you have. We are here for any questions or venting. God Bless.Love & Prayers, PeggyFlorida,  IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly."  -I'm very naive about my PF disease. How does one know when they have started the downhill slide? I'm on oxygen at night and about every 2 months my lungs get really bad and I have to use oxygen during the days also. I have COPD along with the PF. My catscans which my PF Doctor does every 3 months shows a bunch of little-looking grapes. The clusters are on the bottom, tops and sidesof my lungs. I asked him how long approximately would I live and he said "It's up to you!" in a snotty way. I went home thinking, what an ass he is. So again, how does one know when they are on the "downhill side"? Ginny M. from Richmond, VA-- In Breathe-Support , Paradis3@... wrote:>> Hey, Group...> My breathing has been getting worse and worse over the past few weeks > to the point I was afraid the downshill slide had begun. Then I found > allergy meds! After some experimentation, I'm now taking prescription Allegra D > in conjunction with Nasonex spray and this week I'm breathing better than > I have in a very long time. I didn't realize my allergies were so bad. > I'm in NE PA and everybody is talking about how bad theirs are this year.> Also, I made my first visit to the Univ. of Pennsylvania Lung Center > yesterday and it looks like I'll make many more. The high-rez CT scan was > enough to see the IPF, no surgical peeking necessary. Good news was that > they're now doing some transplants up to age 70 in some cases. I'm 66 and > we'll be talking further. And I really don't like Philly traffic!> As an aside, my heart doc told me to cut the cholesterol and the sugar > and the cheese etc etc... and I looked at him and said "Or what? I'll get > sick?" And he said "Oh, yeah, well, I had to say that." We laughed.> > Bill IPF Oct '08> NE PA> **************Great deals on Dell’s most popular laptops â€" Starting at > $479 > (http://pr.atwola.com/promoclk/100126575x1220029082x1201385915/aol?redir=http:%2F%2Fad.doubleclick.net%2Fclk%3B213969145%3B35701480%3Bh)>

[Guest guest]

Ginny, Hi My name is Peggy. I am 66 and have IPF. I am glad you are asking questions of us. I'll see if I can help.Our Lou is on 20L. yes, leaders. She advanced really quickly. She and I were on the same 6 to 8L then allof a sudden she needed more 02. You can tell when you are having a down slide by your breathing. The main thing you needis an Oximeter.. you can check your oxygen saturation while doing different things and report to your Doc when you feelthe need for more 02. Most of us here that has been on the board for a while have one.This disease is different for each of us but the same....if that makes since. Some react differently to lack of 02 and somemeds. The best thing I can advise for you to do is keep a copy of all your records. Be sure you have a Doc you can talk to and will explain every question you have. We are here for any questions or venting. God Bless.Love & Prayers, PeggyFlorida,  IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly."  -I'm very naive about my PF disease. How does one know when they have started the downhill slide? I'm on oxygen at night and about every 2 months my lungs get really bad and I have to use oxygen during the days also. I have COPD along with the PF. My catscans which my PF Doctor does every 3 months shows a bunch of little-looking grapes. The clusters are on the bottom, tops and sidesof my lungs. I asked him how long approximately would I live and he said "It's up to you!" in a snotty way. I went home thinking, what an ass he is. So again, how does one know when they are on the "downhill side"? Ginny M. from Richmond, VA-- In Breathe-Support , Paradis3@... wrote:>> Hey, Group...> My breathing has been getting worse and worse over the past few weeks > to the point I was afraid the downshill slide had begun. Then I found > allergy meds! After some experimentation, I'm now taking prescription Allegra D > in conjunction with Nasonex spray and this week I'm breathing better than > I have in a very long time. I didn't realize my allergies were so bad. > I'm in NE PA and everybody is talking about how bad theirs are this year.> Also, I made my first visit to the Univ. of Pennsylvania Lung Center > yesterday and it looks like I'll make many more. The high-rez CT scan was > enough to see the IPF, no surgical peeking necessary. Good news was that > they're now doing some transplants up to age 70 in some cases. I'm 66 and > we'll be talking further. And I really don't like Philly traffic!> As an aside, my heart doc told me to cut the cholesterol and the sugar > and the cheese etc etc... and I looked at him and said "Or what? I'll get > sick?" And he said "Oh, yeah, well, I had to say that." We laughed.> > Bill IPF Oct '08> NE PA> **************Great deals on Dell’s most popular laptops â€" Starting at > $479 > (http://pr.atwola.com/promoclk/100126575x1220029082x1201385915/aol?redir=http:%2F%2Fad.doubleclick.net%2Fclk%3B213969145%3B35701480%3Bh)>