Re: Hi Everyone

[Guest guest]

Ouch T! I'll pray for it to be not too bad. I've never

had either done YET but I am 50 & they're pushing it

for us old farts. LOL

grannylunatic@...

__________________________________________________

[Guest guest]

Ouch T! I'll pray for it to be not too bad. I've never

had either done YET but I am 50 & they're pushing it

for us old farts. LOL

grannylunatic@...

__________________________________________________

[Guest guest]

Ouch T! I'll pray for it to be not too bad. I've never

had either done YET but I am 50 & they're pushing it

for us old farts. LOL

grannylunatic@...

__________________________________________________

[Guest guest]

Hi, Brownie,

Welcome to the group. We're old friends from another loop. You'll love this one, It is different than the others. More fun but still lots of support. You really get to know each other on this one too.

Glad you joined us........don't let all the emails overwhelm you though. Sometimes I have to just delete a lot of them, but most of the time I can keep up.

[Guest guest]

Hi, Brownie,

Welcome to the group. We're old friends from another loop. You'll love this one, It is different than the others. More fun but still lots of support. You really get to know each other on this one too.

Glad you joined us........don't let all the emails overwhelm you though. Sometimes I have to just delete a lot of them, but most of the time I can keep up.

[Guest guest]

Welcome to TexasTops Brownie! You will find the people on this loop have hearts the size of Texas and beyond...we several non-Texans on here with us and we love 'em all. We have Helen who is our official TexaCadian (she comes here for the winter) now we have 2 with you! Oh, Happy 4th KOPS Anniversary...WOW!!! Again Welcome.

Hugs,

in Fritch, Tx.

Hi Everyone

I'm new to your site and a long way from Texas.I will be a 4 year Kops on friday mar 3rdI found this site and really liked what I've seenIn fact i have printed things to take to my chapterI live in Canada where it is storming tonightOur tops meeting was called off due to weather. Brownie__________ NOD32 1.1424 (20060302) Information __________This message was checked by NOD32 antivirus system.http://www.eset.com

[Guest guest]

Wellcome to our group Brownie! I hope you get the love and supprt that I have, theres all ways thing happening here, we have this lady name Melody! she's so much fun she's always thinking of to keep us motovited, especialy, druring the holidays, I just love her, Eloy.

-------------- Original message from "brownieontops" : -------------- I'm new to your site and a long way from Texas.I will be a 4 year Kops on friday mar 3rdI found this site and really liked what I've seenIn fact i have printed things to take to my chapterI live in Canada where it is storming tonightOur tops meeting was called off due to weather. Brownie

[Guest guest]

hi , my name is kay, im a 52 female ,from penna. i just took a trip to the hospital for chest pain and had a ct with contrast, they were looking for a pe. what they found was chronic intertinal pulmonary fibrosis. what a shock. i go to a pulmonogist next week. what is next?? i feel like i'm in a nightmare and this can't be true. I welcome any advice anyone could give,i also have GERD and have had it for 15 years. Does anyone think there is a connection between the two???

thank god for this group

kay

To: Breathe-Support Sent: Sunday, March 1, 2009 8:52:58 PMSubject: Re: Hi Everyone

, Im sorry if I seem to rant but there is NO EXCUSE for that kind of treatment from your pulmodoc, you CAN change doctors and find one who will take time to answer all your questions. I take prilosec for GERD and use my cpap religeously. And Im claustraphobic! You also need an oximeter as your sats are probably dropping when your hr is so high. Its trying to push more o2 faster since you are sob. Hope this helps. I love my doctors wish I could share them with some of you that have horrible ones.

On Sun, Mar 1, 2009 at 4:11 PM, dcard2008 <dcard2008 (AT) yahoo (DOT) com> wrote:

Hi my name IS Card I was Diagonsed with The Begining of Pulmornary Fibrosis.In Sept Of 2008 and I HAVE A FEW Question's? of concern's I feel terrible all the time. I saw my Pulmornary Doctor on wedesday I Asked him what stage of Fibrosis I had said I DON'T KNOWasked what he thought how long I had to live he said two early to tell did not like his bed side matter you allready getting your coffin ready he said to me. he said that oxygen level looks good so farI have Sleep apena I am getting my mask on wedesday.also yelling at me about my weight. I UNDERSTAND that I put weight on also I have had a Hysteromty a full one that I AM ALSO HORMOMEL I WENT to the hosiptal yesteday i feel so lightheaded and dizzy hardley can see and weak and tired that said the some thing as alway's that it is Veritgo.and they gave me Myccline for dizzyness in which it is does nothing,I feel very weakand

tired I sufferd with chronic sunises and asthma and gerd before I got this monster. I dont like my pulmornary how talks to me like there is nothing wrong with me knowing what he has found and the way i feel.plus my racing heart.my pulse is always 130 with exercise or walking any type of exercise.sitting is 107 or 90s please let me know what you guy;s think I am on cardizem 300 and Linspriol for blood pressure.

-- Dyane 53 Phoenix, AZ Diabetic 96, NSIP 02 Breast Cancer 02, Fibro 07, IPF 07, lipodermatosclerosi s 08, and Ive forgotten the rest HA HA

[Guest guest]

Hi, Kay. As is said often, sorry that you need us but glad you have found us. I think it's pretty usual to be completely freaked-out upon learning that you have this disease - I know I was! I was diagnosed (DX) in September, and am still learning. One of our members says "we don't come with expiration dates", and this forum will help you learn how to live with this ugly disease. Ask any questions, rant if you need to--you will find answers, comfort and kindred spirits when you need them.

B

Barbara McD

IPF, Sept 08

Beautiful Western NC

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9

To: Breathe-Support Sent: Monday, March 2, 2009 11:11:20 AMSubject: Re: Hi Everyone

hi , my name is kay, im a 52 female ,from penna. i just took a trip to the hospital for chest pain and had a ct with contrast, they were looking for a pe. what they found was chronic intertinal pulmonary fibrosis. what a shock. i go to a pulmonogist next week. what is next?? i feel like i'm in a nightmare and this can't be true. I welcome any advice anyone could give,i also have GERD and have had it for 15 years. Does anyone think there is a connection between the two???

thank god for this group

kay

From: Dyane Billings <dyane.billings@ ball-mcgraw. com>To: Breathe-Support@ yahoogroups. comSent: Sunday, March 1, 2009 8:52:58 PMSubject: Re: Hi Everyone

, Im sorry if I seem to rant but there is NO EXCUSE for that kind of treatment from your pulmodoc, you CAN change doctors and find one who will take time to answer all your questions. I take prilosec for GERD and use my cpap religeously. And Im claustraphobic! You also need an oximeter as your sats are probably dropping when your hr is so high. Its trying to push more o2 faster since you are sob. Hope this helps. I love my doctors wish I could share them with some of you that have horrible ones.

On Sun, Mar 1, 2009 at 4:11 PM, dcard2008 <dcard2008 (AT) yahoo (DOT) com> wrote:

Hi my name IS Card I was Diagonsed with The Begining of Pulmornary Fibrosis.In Sept Of 2008 and I HAVE A FEW Question's? of concern's I feel terrible all the time. I saw my Pulmornary Doctor on wedesday I Asked him what stage of Fibrosis I had said I DON'T KNOWasked what he thought how long I had to live he said two early to tell did not like his bed side matter you allready getting your coffin ready he said to me. he said that oxygen level looks good so farI have Sleep apena I am getting my mask on wedesday.also yelling at me about my weight. I UNDERSTAND that I put weight on also I have had a Hysteromty a full one that I AM ALSO HORMOMEL I WENT to the hosiptal yesteday i feel so lightheaded and dizzy hardley can see and weak and tired that said the some thing as alway's that it is Veritgo.and they gave me Myccline for dizzyness in which it is does nothing,I feel very weakand

tired I sufferd with chronic sunises and asthma and gerd before I got this monster. I dont like my pulmornary how talks to me like there is nothing wrong with me knowing what he has found and the way i feel.plus my racing heart.my pulse is always 130 with exercise or walking any type of exercise.sitting is 107 or 90s please let me know what you guy;s think I am on cardizem 300 and Linspriol for blood pressure.

-- Dyane 53 Phoenix, AZ Diabetic 96, NSIP 02 Breast Cancer 02, Fibro 07, IPF 07, lipodermatosclerosi s 08, and Ive forgotten the rest HA HA

[Guest guest]

Hi Kay,

Sorry for the slightly delayed welcome. My name is Beth and I moderate this board. Welcome to Breathe Support! We've all been where you are now, reeling from the shock of an unexpected diagnosis. Keep asking questions, get more than one opinion on what is going on. You might want to consider getting the opinion of a pulmonologist who specializes in ILD's (interstitial lung disease). This is a field unto itself and most run of the mill pulmo's don't see enough of it to be up to date on all the latest information.

Many of us (if not most) also have GERD. There does seem to be a relationship between GERD and ILD but it is poorly understood and more research is needed.

Please hang around. This is a great group and there are lots of caring knowledgeable people here. We're all in this together!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Monday, March 2, 2009 11:11:20 AMSubject: Re: Hi Everyone

hi , my name is kay, im a 52 female ,from penna. i just took a trip to the hospital for chest pain and had a ct with contrast, they were looking for a pe. what they found was chronic intertinal pulmonary fibrosis. what a shock. i go to a pulmonogist next week. what is next?? i feel like i'm in a nightmare and this can't be true. I welcome any advice anyone could give,i also have GERD and have had it for 15 years. Does anyone think there is a connection between the two???

thank god for this group

kay

From: Dyane Billings <dyane.billings@ ball-mcgraw. com>To: Breathe-Support@ yahoogroups. comSent: Sunday, March 1, 2009 8:52:58 PMSubject: Re: Hi Everyone

, Im sorry if I seem to rant but there is NO EXCUSE for that kind of treatment from your pulmodoc, you CAN change doctors and find one who will take time to answer all your questions. I take prilosec for GERD and use my cpap religeously. And Im claustraphobic! You also need an oximeter as your sats are probably dropping when your hr is so high. Its trying to push more o2 faster since you are sob. Hope this helps. I love my doctors wish I could share them with some of you that have horrible ones.

On Sun, Mar 1, 2009 at 4:11 PM, dcard2008 <dcard2008 (AT) yahoo (DOT) com> wrote:

Hi my name IS Card I was Diagonsed with The Begining of Pulmornary Fibrosis.In Sept Of 2008 and I HAVE A FEW Question's? of concern's I feel terrible all the time. I saw my Pulmornary Doctor on wedesday I Asked him what stage of Fibrosis I had said I DON'T KNOWasked what he thought how long I had to live he said two early to tell did not like his bed side matter you allready getting your coffin ready he said to me. he said that oxygen level looks good so farI have Sleep apena I am getting my mask on wedesday.also yelling at me about my weight. I UNDERSTAND that I put weight on also I have had a Hysteromty a full one that I AM ALSO HORMOMEL I WENT to the hosiptal yesteday i feel so lightheaded and dizzy hardley can see and weak and tired that said the some thing as alway's that it is Veritgo.and they gave me Myccline for dizzyness in which it is does nothing,I feel very weakand

tired I sufferd with chronic sunises and asthma and gerd before I got this monster. I dont like my pulmornary how talks to me like there is nothing wrong with me knowing what he has found and the way i feel.plus my racing heart.my pulse is always 130 with exercise or walking any type of exercise.sitting is 107 or 90s please let me know what you guy;s think I am on cardizem 300 and Linspriol for blood pressure.

-- Dyane 53 Phoenix, AZ Diabetic 96, NSIP 02 Breast Cancer 02, Fibro 07, IPF 07, lipodermatosclerosi s 08, and Ive forgotten the rest HA HA

[Guest guest]

mary beth , thank you for the welcome, i feel so isolated, my family doesn't understand and I'm just really afraid of whats next. what does a pulmo doctor do the first visit.? I did some dumb test in my pcp office and failed miserably,, exhaled innto a tube to blow out candles on a screen . i am so short of breath all the time, is that normal ??

Kay

To: Breathe-Support Sent: Tuesday, March 3, 2009 7:56:57 AMSubject: Re: Hi Everyone

Hi Kay,

Sorry for the slightly delayed welcome. My name is Beth and I moderate this board. Welcome to Breathe Support! We've all been where you are now, reeling from the shock of an unexpected diagnosis. Keep asking questions, get more than one opinion on what is going on. You might want to consider getting the opinion of a pulmonologist who specializes in ILD's (interstitial lung disease). This is a field unto itself and most run of the mill pulmo's don't see enough of it to be up to date on all the latest information.

Many of us (if not most) also have GERD. There does seem to be a relationship between GERD and ILD but it is poorly understood and more research is needed.

Please hang around. This is a great group and there are lots of caring knowledgeable people here. We're all in this together!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Beverly Romich <kayromich (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Monday, March 2, 2009 11:11:20 AMSubject: Re: Hi Everyone

hi , my name is kay, im a 52 female ,from penna. i just took a trip to the hospital for chest pain and had a ct with contrast, they were looking for a pe. what they found was chronic intertinal pulmonary fibrosis. what a shock. i go to a pulmonogist next week. what is next?? i feel like i'm in a nightmare and this can't be true. I welcome any advice anyone could give,i also have GERD and have had it for 15 years. Does anyone think there is a connection between the two???

thank god for this group

kay

From: Dyane Billings <dyane.billings@ ball-mcgraw. com>To: Breathe-Support@ yahoogroups. comSent: Sunday, March 1, 2009 8:52:58 PMSubject: Re: Hi Everyone

, Im sorry if I seem to rant but there is NO EXCUSE for that kind of treatment from your pulmodoc, you CAN change doctors and find one who will take time to answer all your questions. I take prilosec for GERD and use my cpap religeously. And Im claustraphobic! You also need an oximeter as your sats are probably dropping when your hr is so high. Its trying to push more o2 faster since you are sob. Hope this helps. I love my doctors wish I could share them with some of you that have horrible ones.

On Sun, Mar 1, 2009 at 4:11 PM, dcard2008 <dcard2008 (AT) yahoo (DOT) com> wrote:

Hi my name IS Card I was Diagonsed with The Begining of Pulmornary Fibrosis.In Sept Of 2008 and I HAVE A FEW Question's? of concern's I feel terrible all the time. I saw my Pulmornary Doctor on wedesday I Asked him what stage of Fibrosis I had said I DON'T KNOWasked what he thought how long I had to live he said two early to tell did not like his bed side matter you allready getting your coffin ready he said to me. he said that oxygen level looks good so farI have Sleep apena I am getting my mask on wedesday.also yelling at me about my weight. I UNDERSTAND that I put weight on also I have had a Hysteromty a full one that I AM ALSO HORMOMEL I WENT to the hosiptal yesteday i feel so lightheaded and dizzy hardley can see and weak and tired that said the some thing as alway's that it is Veritgo.and they gave me Myccline for dizzyness in which it is does nothing,I feel very weakand

tired I sufferd with chronic sunises and asthma and gerd before I got this monster. I dont like my pulmornary how talks to me like there is nothing wrong with me knowing what he has found and the way i feel.plus my racing heart.my pulse is always 130 with exercise or walking any type of exercise.sitting is 107 or 90s please let me know what you guy;s think I am on cardizem 300 and Linspriol for blood pressure.

-- Dyane 53 Phoenix, AZ Diabetic 96, NSIP 02 Breast Cancer 02, Fibro 07, IPF 07, lipodermatosclerosi s 08, and Ive forgotten the rest HA HA

[Guest guest]

Kay,

Well obviously it is not normal to be so short of breath all the time. That would make for a pretty miserable existance. Something is definitely going on and the pulmonologist app't is the first step to figuring it out.

As for what will happen at your first app't....well here's some of what should happen. Be prepared for the first app't to be more questions than answers. An accurate diagnosis can take time.First and most important an extensive history should be taken. They should ask you questions that make you scratch your head. Things you think could not possibly be related to how you are feeling now. Questions about where you've worked over the years, childhood illnesses, where you've lived and the type of housing, traveling where and when, family history etc etc.

He will likely order blood tests, a high resolution ct scan and a pulmonary function test, they may do a '6 minute walk' to assess your need for supplementary O2.

I would not expect all these tests to be done that day, but I would expect that he will ask that you have them done. This will give him the information he needs to make an accurate diagnosis.

He will also of course to a physical exam, listen to your heart and lungs, spending alot of time listening to your lungs through your back. He'll be listening for the classic 'snap, crackle, pop' of pulmonary fibrosis. It may or may not be there.

Now all this may not happen at your appointment but a good portion of it should. If it doesn't or you feel as though your questions and concerns are not being taken seriously a little warning bell should go off in your head.

Take this one step at a time, try not to panic. Keep lists of your questions and keep your own medical records. Request copies of all test results so that you have everything in your own files. Come back here and ask whatever questions you have. We may not have the answers but very often someone here will know where to find an answer. And just as important is the support and friendship that you can find here. This can be a lonely frightening process. Family often just doesn't understand. We 'get it' in a way that someone who does not have this disease just cannot.

I hope that helps a bit. We're here anytime you need us!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Tuesday, March 3, 2009 8:20:09 AMSubject: Re: Hi Everyone

mary beth , thank you for the welcome, i feel so isolated, my family doesn't understand and I'm just really afraid of whats next. what does a pulmo doctor do the first visit.? I did some dumb test in my pcp office and failed miserably,, exhaled innto a tube to blow out candles on a screen . i am so short of breath all the time, is that normal ??

Kay

From: Beth <mbmurtha (AT) yahoo (DOT) .com>To: Breathe-Support@ yahoogroups. comSent: Tuesday, March 3, 2009 7:56:57 AMSubject: Re: Hi Everyone

Hi Kay,

Sorry for the slightly delayed welcome. My name is Beth and I moderate this board. Welcome to Breathe Support! We've all been where you are now, reeling from the shock of an unexpected diagnosis. Keep asking questions, get more than one opinion on what is going on. You might want to consider getting the opinion of a pulmonologist who specializes in ILD's (interstitial lung disease). This is a field unto itself and most run of the mill pulmo's don't see enough of it to be up to date on all the latest information.

Many of us (if not most) also have GERD. There does seem to be a relationship between GERD and ILD but it is poorly understood and more research is needed.

Please hang around. This is a great group and there are lots of caring knowledgeable people here. We're all in this together!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Beverly Romich <kayromich (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Monday, March 2, 2009 11:11:20 AMSubject: Re: Hi Everyone

hi , my name is kay, im a 52 female ,from penna. i just took a trip to the hospital for chest pain and had a ct with contrast, they were looking for a pe. what they found was chronic intertinal pulmonary fibrosis. what a shock. i go to a pulmonogist next week. what is next?? i feel like i'm in a nightmare and this can't be true. I welcome any advice anyone could give,i also have GERD and have had it for 15 years. Does anyone think there is a connection between the two???

thank god for this group

kay

From: Dyane Billings <dyane.billings@ ball-mcgraw. com>To: Breathe-Support@ yahoogroups. comSent: Sunday, March 1, 2009 8:52:58 PMSubject: Re: Hi Everyone

, Im sorry if I seem to rant but there is NO EXCUSE for that kind of treatment from your pulmodoc, you CAN change doctors and find one who will take time to answer all your questions. I take prilosec for GERD and use my cpap religeously. And Im claustraphobic! You also need an oximeter as your sats are probably dropping when your hr is so high. Its trying to push more o2 faster since you are sob. Hope this helps. I love my doctors wish I could share them with some of you that have horrible ones.

On Sun, Mar 1, 2009 at 4:11 PM, dcard2008 <dcard2008 (AT) yahoo (DOT) com> wrote:

Hi my name IS Card I was Diagonsed with The Begining of Pulmornary Fibrosis.In Sept Of 2008 and I HAVE A FEW Question's? of concern's I feel terrible all the time. I saw my Pulmornary Doctor on wedesday I Asked him what stage of Fibrosis I had said I DON'T KNOWasked what he thought how long I had to live he said two early to tell did not like his bed side matter you allready getting your coffin ready he said to me. he said that oxygen level looks good so farI have Sleep apena I am getting my mask on wedesday.also yelling at me about my weight. I UNDERSTAND that I put weight on also I have had a Hysteromty a full one that I AM ALSO HORMOMEL I WENT to the hosiptal yesteday i feel so lightheaded and dizzy hardley can see and weak and tired that said the some thing as alway's that it is Veritgo.and they gave me Myccline for dizzyness in which it is does nothing,I feel very weakand

tired I sufferd with chronic sunises and asthma and gerd before I got this monster. I dont like my pulmornary how talks to me like there is nothing wrong with me knowing what he has found and the way i feel.plus my racing heart.my pulse is always 130 with exercise or walking any type of exercise.sitting is 107 or 90s please let me know what you guy;s think I am on cardizem 300 and Linspriol for blood pressure.

-- Dyane 53 Phoenix, AZ Diabetic 96, NSIP 02 Breast Cancer 02, Fibro 07, IPF 07, lipodermatosclerosi s 08, and Ive forgotten the rest HA HA