Hello Everyone

[Guest guest]

Hello Everyone,

I am a newbie to your site. I have been reading your posts and am so grateful

for all the information, support, tidbits of the day, and just the sharing of

the journey we all have been selected to take. There is a wealth of information

on your site and there are many things which I have not thought of yet that your

group has made me think about. The way everyone supports and reaches out to

others is awesome.

My name is and I am 54 years old and live in Robbinsville, New Jersey. My

handle is karenmary06. I was diagnosed with IPF in 2005. I did have the VAT in

2005 at which time I was told I had IPF/boop. From 2005 until now, I have been

on and off prednisone and Azathioprine. I am currently on 30 mg prednisone,

being weaned off from 40, and 150 mg Azathioprine. I am on oxygen all the time

needing at least 4 with exertion. I have had a number of reactions to

prednisone which I entered into your spreadsheet on your website.

My doctor is associated with Princeton Medical Center and one of the first

things he wanted me to do was go to pulmonary rehab. I did complete the program

and started maintenance. The last month I have not been feeling well since I

developed a sinus infection. I just completed the antibiotics for this and the

infection is feeling better. The prednisone is also making my sugar crazy. I am

still trying to get to the hospital to do rehab there. No matter what, I always

walk and try to do some kind of rehab at home. My 02 is just not staying in the

90. I will call my pulmonary doctor to see what he wants me to do. He gave me

the choice of going to Temple University Hospital, DR. Criner, or the University

of Penn, Dr. Pollefsy. I asked him if I could go to both so I could meet both

doctors. So, I am starting with Temple to begin the lung transplant process.

I am not on disability yet but found all the talk about it very interesting. My

job currently lets me work remotely so I can work at home which I am grateful

for since it keeps my mind busy.

Let me know if you live in my area and where or if you go to Pulmonary Rehab.

The past month has been extremely hard to get myself there. My oxygen goes to

the 80's and it takes me an half hour to get in the building, another hour at

rehab with all the sitting I need to do to continue and then I have the journey

back home. The rehab includes both cardiac and pulmonary patients. I haven't

seen any pulmonary patients and I am beginning to scare all the cardiac ones.

They are a nice group of people but can't understand the breathless we feel.

Any experience you may have had with Temple or HUP would be appreciated. With

the oxygen, if you have a concentrator do you leave it at the highest level you

need? By this I mean if walking you need 4 but sitting not so high, do you just

set it for worst case? My concentrator is downstairs and once I go upstairs I

don't go back down to change the setting.

06 IPF/05

[Guest guest]

Hi ,

Welcome to the site. Sorry you had to find it but I think you will find it very helpful. I read that you are going to Temple for an evaluation. That is where my pulmonary doctor is. He really wants me to lose weight so he can get me started on the road to a lung transplant. I have been trying and I have an appointment this week. I guess I'll find out soon what to do. I hope you can join us at some point for lunch. It is nice to put a face to the name.

Take care and good luck at the doctors.

Adrienne

To: Breathe-Support Sent: Mon, January 18, 2010 11:22:25 AMSubject: Hello Everyone

Hello Everyone, I am a newbie to your site. I have been reading your posts and am so grateful for all the information, support, tidbits of the day, and just the sharing of the journey we all have been selected to take. There is a wealth of information on your site and there are many things which I have not thought of yet that your group has made me think about. The way everyone supports and reaches out to others is awesome.My name is and I am 54 years old and live in Robbinsville, New Jersey. My handle is karenmary06. I was diagnosed with IPF in 2005. I did have the VAT in 2005 at which time I was told I had IPF/boop. From 2005 until now, I have been on and off prednisone and Azathioprine. I am currently on 30 mg prednisone, being weaned off from 40, and 150 mg Azathioprine. I am on oxygen all the time needing at least 4 with exertion. I have had a number of reactions to prednisone which I entered into your spreadsheet on your

website.My doctor is associated with Princeton Medical Center and one of the first things he wanted me to do was go to pulmonary rehab. I did complete the program and started maintenance. The last month I have not been feeling well since I developed a sinus infection. I just completed the antibiotics for this and the infection is feeling better. The prednisone is also making my sugar crazy. I am still trying to get to the hospital to do rehab there. No matter what, I always walk and try to do some kind of rehab at home. My 02 is just not staying in the 90. I will call my pulmonary doctor to see what he wants me to do. He gave me the choice of going to Temple University Hospital, DR. Criner, or the University of Penn, Dr. Pollefsy. I asked him if I could go to both so I could meet both doctors. So, I am starting with Temple to begin the lung transplant process. I am not on disability yet but found all the talk about it very interesting.

My job currently lets me work remotely so I can work at home which I am grateful for since it keeps my mind busy. Let me know if you live in my area and where or if you go to Pulmonary Rehab. The past month has been extremely hard to get myself there. My oxygen goes to the 80's and it takes me an half hour to get in the building, another hour at rehab with all the sitting I need to do to continue and then I have the journey back home. The rehab includes both cardiac and pulmonary patients. I haven't seen any pulmonary patients and I am beginning to scare all the cardiac ones. They are a nice group of people but can't understand the breathless we feel. Any experience you may have had with Temple or HUP would be appreciated. With the oxygen, if you have a concentrator do you leave it at the highest level you need? By this I mean if walking you need 4 but sitting not so high, do you just set it for worst case? My concentrator is downstairs and once

I go upstairs I don't go back down to change the setting. 06 IPF/05

[Guest guest]

Hi and welcome to Breathe Support! I'm glad you found us but I'm sorry you had reason to even look for a group like this. My name is Beth and I've belonged to this group for about 3 and a half years.

This is such a wonderful place to find people who get it, to get the support we all need and to share information and resources that can make our lives easier.

Please consider yourself at home. Feel free to use the site in whatever way makes sense for you. Welcome!!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Mon, January 18, 2010 11:22:25 AMSubject: Hello Everyone

Hello Everyone, I am a newbie to your site. I have been reading your posts and am so grateful for all the information, support, tidbits of the day, and just the sharing of the journey we all have been selected to take. There is a wealth of information on your site and there are many things which I have not thought of yet that your group has made me think about. The way everyone supports and reaches out to others is awesome.My name is and I am 54 years old and live in Robbinsville, New Jersey. My handle is karenmary06. I was diagnosed with IPF in 2005. I did have the VAT in 2005 at which time I was told I had IPF/boop. From 2005 until now, I have been on and off prednisone and Azathioprine. I am currently on 30 mg prednisone, being weaned off from 40, and 150 mg Azathioprine. I am on oxygen all the time needing at least 4 with exertion. I have had a number of reactions to prednisone which I entered into your spreadsheet on your

website.My doctor is associated with Princeton Medical Center and one of the first things he wanted me to do was go to pulmonary rehab. I did complete the program and started maintenance. The last month I have not been feeling well since I developed a sinus infection. I just completed the antibiotics for this and the infection is feeling better. The prednisone is also making my sugar crazy. I am still trying to get to the hospital to do rehab there. No matter what, I always walk and try to do some kind of rehab at home. My 02 is just not staying in the 90. I will call my pulmonary doctor to see what he wants me to do. He gave me the choice of going to Temple University Hospital, DR. Criner, or the University of Penn, Dr. Pollefsy. I asked him if I could go to both so I could meet both doctors. So, I am starting with Temple to begin the lung transplant process. I am not on disability yet but found all the talk about it very interesting.

My job currently lets me work remotely so I can work at home which I am grateful for since it keeps my mind busy. Let me know if you live in my area and where or if you go to Pulmonary Rehab. The past month has been extremely hard to get myself there. My oxygen goes to the 80's and it takes me an half hour to get in the building, another hour at rehab with all the sitting I need to do to continue and then I have the journey back home. The rehab includes both cardiac and pulmonary patients. I haven't seen any pulmonary patients and I am beginning to scare all the cardiac ones. They are a nice group of people but can't understand the breathless we feel. Any experience you may have had with Temple or HUP would be appreciated. With the oxygen, if you have a concentrator do you leave it at the highest level you need? By this I mean if walking you need 4 but sitting not so high, do you just set it for worst case? My concentrator is downstairs and once

I go upstairs I don't go back down to change the setting. 06 IPF/05

[Guest guest]

Hi , Welcome to the group! I’m sorry you too suffer from this dreadful disease, but you will find support, encouragement, love and humor from the members here. This group has given me a sense of comfort to know that I don’t have to stumble down this unfamiliar path alone. When I come to a crossroad I have a place to turn to!

I was diagnosed with IPF in May 2009, but believe I have been living with it for at least 3 years prior to this diagnosis. In Aug 2006 I was diagnosed with pneumonia, but my pulmo doctor now believes it was early stages of IPF. My treatment is limited. I am on the cocktail mixer of Prednisone 20mg, Azathioprine 100mg, and N-Acetylcysteine 600mg. My only other treatment is a lung transplant.

I'm on O2, 3L for exertion (that's just about everytime I get up and move), 2L for sleep, and 0 for sitting. I leave my concentrator on all day at 3. When I sit down and don't need it I just remove my cannula and then put it back in when I get up. The only time I turn the concentrator down is at night to 2.

C_53_Familial IPF_5/09, Washington

HOPE doesn't disappoint!

To: Breathe-Support Sent: Mon, January 18, 2010 8:22:25 AMSubject: Hello Everyone

Hello Everyone, I am a newbie to your site. I have been reading your posts and am so grateful for all the information, support, tidbits of the day, and just the sharing of the journey we all have been selected to take. There is a wealth of information on your site and there are many things which I have not thought of yet that your group has made me think about. The way everyone supports and reaches out to others is awesome.My name is and I am 54 years old and live in Robbinsville, New Jersey. My handle is karenmary06. I was diagnosed with IPF in 2005. I did have the VAT in 2005 at which time I was told I had IPF/boop. From 2005 until now, I have been on and off prednisone and Azathioprine. I am currently on 30 mg prednisone, being weaned off from 40, and 150 mg Azathioprine. I am on oxygen all the time needing at least 4 with exertion. I have had a number of reactions to prednisone which I entered into your spreadsheet on your

website.My doctor is associated with Princeton Medical Center and one of the first things he wanted me to do was go to pulmonary rehab. I did complete the program and started maintenance. The last month I have not been feeling well since I developed a sinus infection. I just completed the antibiotics for this and the infection is feeling better. The prednisone is also making my sugar crazy. I am still trying to get to the hospital to do rehab there. No matter what, I always walk and try to do some kind of rehab at home. My 02 is just not staying in the 90. I will call my pulmonary doctor to see what he wants me to do. He gave me the choice of going to Temple University Hospital, DR. Criner, or the University of Penn, Dr. Pollefsy. I asked him if I could go to both so I could meet both doctors. So, I am starting with Temple to begin the lung transplant process. I am not on disability yet but found all the talk about it very interesting.

My job currently lets me work remotely so I can work at home which I am grateful for since it keeps my mind busy. Let me know if you live in my area and where or if you go to Pulmonary Rehab. The past month has been extremely hard to get myself there. My oxygen goes to the 80's and it takes me an half hour to get in the building, another hour at rehab with all the sitting I need to do to continue and then I have the journey back home. The rehab includes both cardiac and pulmonary patients. I haven't seen any pulmonary patients and I am beginning to scare all the cardiac ones. They are a nice group of people but can't understand the breathless we feel. Any experience you may have had with Temple or HUP would be appreciated. With the oxygen, if you have a concentrator do you leave it at the highest level you need? By this I mean if walking you need 4 but sitting not so high, do you just set it for worst case? My concentrator is downstairs and once

I go upstairs I don't go back down to change the setting. 06 IPF/05

[Guest guest]

Thanks Beth and to all for the warm welcome.

To: Breathe-Support Sent: Mon, January 18, 2010 8:16:48 PMSubject: Re: Hello Everyone

Hi and welcome to Breathe Support! I'm glad you found us but I'm sorry you had reason to even look for a group like this. My name is Beth and I've belonged to this group for about 3 and a half years.

This is such a wonderful place to find people who get it, to get the support we all need and to share information and resources that can make our lives easier.

Please consider yourself at home. Feel free to use the site in whatever way makes sense for you. Welcome!!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: <karenmary06@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Mon, January 18, 2010 11:22:25 AMSubject: Hello Everyone

Hello Everyone, I am a newbie to your site. I have been reading your posts and am so grateful for all the information, support, tidbits of the day, and just the sharing of the journey we all have been selected to take. There is a wealth of information on your site and there are many things which I have not thought of yet that your group has made me think about. The way everyone supports and reaches out to others is awesome.My name is and I am 54 years old and live in Robbinsville, New Jersey. My handle is karenmary06. I was diagnosed with IPF in 2005. I did have the VAT in 2005 at which time I was told I had IPF/boop. From 2005 until now, I have been on and off prednisone and Azathioprine. I am currently on 30 mg prednisone, being weaned off from 40, and 150 mg Azathioprine. I am on oxygen all the time needing at least 4 with exertion. I have had a number of reactions to prednisone which I entered into your spreadsheet on your

website.My doctor is associated with Princeton Medical Center and one of the first things he wanted me to do was go to pulmonary rehab. I did complete the program and started maintenance. The last month I have not been feeling well since I developed a sinus infection. I just completed the antibiotics for this and the infection is feeling better. The prednisone is also making my sugar crazy. I am still trying to get to the hospital to do rehab there. No matter what, I always walk and try to do some kind of rehab at home. My 02 is just not staying in the 90. I will call my pulmonary doctor to see what he wants me to do. He gave me the choice of going to Temple University Hospital, DR. Criner, or the University of Penn, Dr. Pollefsy. I asked him if I could go to both so I could meet both doctors. So, I am starting with Temple to begin the lung transplant process. I am not on disability yet but found all the talk about it very interesting.

My job currently lets me work remotely so I can work at home which I am grateful for since it keeps my mind busy. Let me know if you live in my area and where or if you go to Pulmonary Rehab. The past month has been extremely hard to get myself there. My oxygen goes to the 80's and it takes me an half hour to get in the building, another hour at rehab with all the sitting I need to do to continue and then I have the journey back home. The rehab includes both cardiac and pulmonary patients. I haven't seen any pulmonary patients and I am beginning to scare all the cardiac ones. They are a nice group of people but can't understand the breathless we feel. Any experience you may have had with Temple or HUP would be appreciated. With the oxygen, if you have a concentrator do you leave it at the highest level you need? By this I mean if walking you need 4 but sitting not so high, do you just set it for worst case? My concentrator is downstairs and once

I go upstairs I don't go back down to change the setting. 06 IPF/05

[Guest guest]

Hi ,

I'm glad I found this group. It gives me comfort also knowing that I am not alone and hearing what has helped and not helped everyone. The sharing is awesome.

06 IPF 2/05

To: Breathe-Support Sent: Mon, January 18, 2010 11:00:32 PMSubject: Re: Hello Everyone

Hi , Welcome to the group! I’m sorry you too suffer from this dreadful disease, but you will find support, encouragement, love and humor from the members here. This group has given me a sense of comfort to know that I don’t have to stumble down this unfamiliar path alone. When I come to a crossroad I have a place to turn to!

I was diagnosed with IPF in May 2009, but believe I have been living with it for at least 3 years prior to this diagnosis. In Aug 2006 I was diagnosed with pneumonia, but my pulmo doctor now believes it was early stages of IPF. My treatment is limited. I am on the cocktail mixer of Prednisone 20mg, Azathioprine 100mg, and N-Acetylcysteine 600mg. My only other treatment is a lung transplant.

I'm on O2, 3L for exertion (that's just about everytime I get up and move), 2L for sleep, and 0 for sitting. I leave my concentrator on all day at 3.. When I sit down and don't need it I just remove my cannula and then put it back in when I get up. The only time I turn the concentrator down is at night to 2.

C_53_Familial IPF_5/09, Washington

HOPE doesn't disappoint!

From: <karenmary06@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Mon, January 18, 2010 8:22:25 AMSubject: Hello Everyone

Hello Everyone, I am a newbie to your site. I have been reading your posts and am so grateful for all the information, support, tidbits of the day, and just the sharing of the journey we all have been selected to take. There is a wealth of information on your site and there are many things which I have not thought of yet that your group has made me think about. The way everyone supports and reaches out to others is awesome.My name is and I am 54 years old and live in Robbinsville, New Jersey. My handle is karenmary06. I was diagnosed with IPF in 2005. I did have the VAT in 2005 at which time I was told I had IPF/boop. From 2005 until now, I have been on and off prednisone and Azathioprine. I am currently on 30 mg prednisone, being weaned off from 40, and 150 mg Azathioprine. I am on oxygen all the time needing at least 4 with exertion. I have had a number of reactions to prednisone which I entered into your spreadsheet on your

website.My doctor is associated with Princeton Medical Center and one of the first things he wanted me to do was go to pulmonary rehab. I did complete the program and started maintenance. The last month I have not been feeling well since I developed a sinus infection. I just completed the antibiotics for this and the infection is feeling better. The prednisone is also making my sugar crazy. I am still trying to get to the hospital to do rehab there. No matter what, I always walk and try to do some kind of rehab at home. My 02 is just not staying in the 90. I will call my pulmonary doctor to see what he wants me to do. He gave me the choice of going to Temple University Hospital, DR. Criner, or the University of Penn, Dr. Pollefsy. I asked him if I could go to both so I could meet both doctors. So, I am starting with Temple to begin the lung transplant process. I am not on disability yet but found all the talk about it very interesting.

My job currently lets me work remotely so I can work at home which I am grateful for since it keeps my mind busy. Let me know if you live in my area and where or if you go to Pulmonary Rehab. The past month has been extremely hard to get myself there. My oxygen goes to the 80's and it takes me an half hour to get in the building, another hour at rehab with all the sitting I need to do to continue and then I have the journey back home. The rehab includes both cardiac and pulmonary patients. I haven't seen any pulmonary patients and I am beginning to scare all the cardiac ones. They are a nice group of people but can't understand the breathless we feel. Any experience you may have had with Temple or HUP would be appreciated. With the oxygen, if you have a concentrator do you leave it at the highest level you need? By this I mean if walking you need 4 but sitting not so high, do you just set it for worst case? My concentrator is downstairs and once

I go upstairs I don't go back down to change the setting. 06 IPF/05

[Guest guest]

,Except for the meds sounds like me. I am still trying to figure out why no drugs were offered to me except NAC. Am going to NYC next month and will probably find out more.To: Breathe-Support Sent: Mon, January 18, 2010 11:00:32 PMSubject: Re: Hello Everyone

Hi , Welcome to the group! I’m sorry you too suffer from this dreadful disease, but you will find support, encouragement, love and humor from the members here. This group has given me a sense of comfort to know that I don’t have to stumble down this unfamiliar path alone. When I come to a crossroad I have a place to turn to! I was diagnosed with IPF in May 2009, but believe I have been living with it for at least 3 years prior to this diagnosis. In Aug 2006 I was diagnosed with pneumonia, but my pulmo doctor now believes it was early stages of IPF. My treatment is limited. I am on the cocktail mixer of Prednisone 20mg, Azathioprine 100mg, and N-Acetylcysteine 600mg. My only other treatment is a lung transplant.

I'm on O2, 3L for exertion (that's just about everytime I get up and move), 2L for sleep, and 0 for sitting.. I leave my concentrator on all day at 3. When I sit down and don't need it I just remove my cannula and then put it back in when I get up. The only time I turn the concentrator down is at night to 2.

C_53_Familial IPF_5/09, Washington

HOPE doesn't disappoint!

From: <karenmary06@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Mon, January 18, 2010 8:22:25 AMSubject: Hello Everyone

Hello Everyone, I am a newbie to your site. I have been reading your posts and am so grateful for all the information, support, tidbits of the day, and just the sharing of the journey we all have been selected to take. There is a wealth of information on your site and there are many things which I have not thought of yet that your group has made me think about. The way everyone supports and reaches out to others is awesome.My name is and I am 54 years old and live in Robbinsville, New Jersey. My handle is karenmary06. I was diagnosed with IPF in 2005. I did have the VAT in 2005 at which time I was told I had IPF/boop. From 2005 until now, I have been on and off prednisone and Azathioprine. I am currently on 30 mg prednisone, being weaned off from 40, and 150 mg Azathioprine. I am on oxygen all the time needing at least 4 with exertion. I have had a number of reactions to prednisone which I entered into your spreadsheet on your

website.My doctor is associated with Princeton Medical Center and one of the first things he wanted me to do was go to pulmonary rehab. I did complete the program and started maintenance. The last month I have not been feeling well since I developed a sinus infection. I just completed the antibiotics for this and the infection is feeling better. The prednisone is also making my sugar crazy. I am still trying to get to the hospital to do rehab there. No matter what, I always walk and try to do some kind of rehab at home. My 02 is just not staying in the 90. I will call my pulmonary doctor to see what he wants me to do. He gave me the choice of going to Temple University Hospital, DR. Criner, or the University of Penn, Dr. Pollefsy. I asked him if I could go to both so I could meet both doctors. So, I am starting with Temple to begin the lung transplant process. I am not on disability yet but found all the talk about it very interesting.

My job currently lets me work remotely so I can work at home which I am grateful for since it keeps my mind busy. Let me know if you live in my area and where or if you go to Pulmonary Rehab. The past month has been extremely hard to get myself there. My oxygen goes to the 80's and it takes me an half hour to get in the building, another hour at rehab with all the sitting I need to do to continue and then I have the journey back home. The rehab includes both cardiac and pulmonary patients. I haven't seen any pulmonary patients and I am beginning to scare all the cardiac ones. They are a nice group of people but can't understand the breathless we feel. Any experience you may have had with Temple or HUP would be appreciated. With the oxygen, if you have a concentrator do you leave it at the highest level you need? By this I mean if walking you need 4 but sitting not so high, do you just set it for worst case? My concentrator is downstairs and once

I go upstairs I don't go back down to change the setting. 06 IPF/05