Re: Hello, My Name is Donna

[Guest guest]

Just a quick Thank you to all of you for the welcome. Wishing you all a good day!Donna (Iowa)To: Breathe-Support Sent: Sunday, October 4, 2009 8:52:55 PMSubject: Re: Hello, My Name is Donna

Donna,

Hi and welcome! I am sorry that you had reason to look for a group like this but since you did I'm glad that we are here for you to find! My name is Beth and I am the moderator of this group. I have fibrotic NSIP one of the many varieties of pulmonary fibrosis.

Do you know if you had a CT scan or just a chest x-ray? I would just encourage you to stay calm until you see the pulmonary specialist next month. We've had many people pass through here who were told they had PF but ultimately it was discovered they did not. I'll keep my fingers crossed that you don't have it either.

The most important thing you have to do now is rest and look after yourself. Use your oxygen the way it's been prescribed. Do you have an oximeter? (the little thing they put on the end of your finger to see what your oxygen levels are) If you don't you might want to consider purchasing one. You can get one for around $70 and it's an investment in your own safety. It is important for you especially though to use your oxygen carefully and the way it's prescribed. Because you apparently have restrictive lung disease (fibrosis) along with obstructive lung disease (COPD, emphysema) your situation is complex and not everything we discuss here will apply to you.

I'm sorry you are going through this. I was 46 when I was diagnosed, had never smoked and had no history of lung disease in my family. It felt like a sucker punch. I do understand how you feel.

Please continue to ask any questions you have. We will help in any way we can!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: simply-irresistible <mischievouskitten@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Sun, October 4, 2009 9:00:46 PMSubject: Hello, My Name is Donna

I just thought I would take the time to introduce myself. This is my first post to the group. I am 48 female,living in Iowa for almost 5 years now. I am originally from Mo. but have traveled most of my life!I have been diagnosed with COPD for several years now. I had my first bout of pneumonia about 6 years ago and have had it several times since then. Recently I was in the hospital with a stay of 6 days this was week before last I think. My oxygen kept staying in the lower 80s when they took the oxygen off. So I am now at home on oxygen 24/7. Its been brought up that I have emphysema but not until an ER visit last night did a Dr answer yes that I have what she believes emphysema and pretty bad pulmonary fibrosis. The scarring I am aware started with my first bout of pneumonia. (that is at least when the Dr told me he saw scarring.It has been mentioned I have Mild CHF (Congestive Heart Failure). But that diagnosis has not been real

clear just brought up several times. If I remember correctly I've had (2) echo cardiograms the first was said to look good but the second one only a month later was said to see some mild CHF. This last 6 day hospital stay was very hard on me (the worse so far)!I've been very scared! This is my first time home on oxygen. I am scheduled to see a Pulmonary Specialist in Nov. There is many questions I have because it seems no one is being totally clear. My Mother died of emphysema at 59. With me being 48 I am pretty scared. I use to smoke for close to 22 years and stopped after mom died which has been close to 13 years.Thank you for being here and I look forward to participating in the group and knowing you all. Wishing all well...mischievouskitten (aka: Donna) Iowa

[Guest guest]

Hello Donna...want to welcome to our 'air family'. This is the best place you can be as we fight our common illnesses.

My mother died at 63 and I just knew I would too. Now I'm 71 and realized I worried for nothing! My time is MY time, not HER time.

That was an early death for you mom and it's hard not to remember.

You have quite a few dx (diagnosis) to be concerned about. Me too.

I have fibromyalgia and arthritis and other nuisance problems. But we learn from Peggy here that we do not have an expiration date stamped on our fannies!

Welcome.

MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there!

Re: Hello, My Name is Donna

DonnaYour story isn't unusual. However, also don't jump to conclusions ofhaving PF on the basis of it either. You haven't even seen the pulmonaryspecialist. Now, I don't know this specialist but the majority still arenot expert in PF so you may need a further specialist at an InterstitialLung Disease center.While Pneumonia can certainly cause some scarring and I guess that isfibrosis and lung so pulmonary fibrosis, its not necessarily what wenormally construe as the family of serious progressive diseases. Wait tofind out more definitively if you have damage that is progressing and,if so, what form of pulmonary fibrosis.After what you've been through, your saturation levels now and yourcurrent oxygen needs may reflect the recent trauma, COPD or PF but itsreally hard to know which. It will take more diagnosis by those trulyexpert to get a more definitive answer.>> I just thought I would take the time to introduce myself. This is myfirst post to the group. I am 48 female,living in Iowa for almost 5years now. I am originally from Mo. but have traveled most of my life!>> I have been diagnosed with COPD for several years now. I had my firstbout of pneumonia about 6 years ago and have had it several times sincethen. Recently I was in the hospital with a stay of 6 days this was weekbefore last I think. My oxygen kept staying in the lower 80s when theytook the oxygen off. So I am now at home on oxygen 24/7. Its beenbrought up that I have emphysema but not until an ER visit last nightdid a Dr answer yes that I have what she believes emphysema and prettybad pulmonary fibrosis. The scarring I am aware started with my firstbout of pneumonia. (that is at least when the Dr told me he sawscarring.>> It has been mentioned I have Mild CHF (Congestive Heart Failure). Butthat diagnosis has not been real clear just brought up several times. IfI remember correctly I've had (2) echo cardiograms the first was saidto look good but the second one only a month later was said to see somemild CHF.>> This last 6 day hospital stay was very hard on me (the worse so far)!> I've been very scared! This is my first time home on oxygen. I amscheduled to see a Pulmonary Specialist in Nov. There is many questionsI have because it seems no one is being totally clear.>> My Mother died of emphysema at 59. With me being 48 I am prettyscared. I use to smoke for close to 22 years and stopped after mom diedwhich has been close to 13 years.>> Thank you for being here and I look forward to participating in thegroup and knowing you all. Wishing all well...>> mischievouskitten (aka: Donna) Iowa>

[Guest guest]

Nice to meet you too !!!Donna (Iowa)To: Breathe-Support Sent: Monday, October 5, 2009 11:45:10 AMSubject: Re: Hello, My Name is Donna

Donna

I was born and raised in Nebraska, glad to see someone from that region

<FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http:// us.i1.yimg. com/us.yimg. com/i/mesg/ tsmileys2/ 50.gif"></FONT>

From: Mischievous Kitten <mischievouskitten@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Monday, October 5, 2009 11:30:56 AMSubject: Re: Hello, My Name is Donna

Just a quick Thank you to all of you for the welcome. Wishing you all a good day!Donna (Iowa)

From: Beth <mbmurtha (AT) yahoo (DOT) . com>To: Breathe-Support@ yahoogroups. comSent: Sunday, October 4, 2009 8:52:55 PMSubject: Re: Hello, My Name is Donna

Donna,

Hi and welcome! I am sorry that you had reason to look for a group like this but since you did I'm glad that we are here for you to find! My name is Beth and I am the moderator of this group. I have fibrotic NSIP one of the many varieties of pulmonary fibrosis.

Do you know if you had a CT scan or just a chest x-ray? I would just encourage you to stay calm until you see the pulmonary specialist next month. We've had many people pass through here who were told they had PF but ultimately it was discovered they did not. I'll keep my fingers crossed that you don't have it either.

The most important thing you have to do now is rest and look after yourself. Use your oxygen the way it's been prescribed. Do you have an oximeter? (the little thing they put on the end of your finger to see what your oxygen levels are) If you don't you might want to consider purchasing one. You can get one for around $70 and it's an investment in your own safety. It is important for you especially though to use your oxygen carefully and the way it's prescribed. Because you apparently have restrictive lung disease (fibrosis) along with obstructive lung disease (COPD, emphysema) your situation is complex and not everything we discuss here will apply to you.

I'm sorry you are going through this.. I was 46 when I was diagnosed, had never smoked and had no history of lung disease in my family. It felt like a sucker punch. I do understand how you feel.

Please continue to ask any questions you have. We will help in any way we can!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: simply-irresistible <mischievouskitten@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Sun, October 4, 2009 9:00:46 PMSubject: Hello, My Name is Donna

I just thought I would take the time to introduce myself. This is my first post to the group. I am 48 female,living in Iowa for almost 5 years now. I am originally from Mo. but have traveled most of my life!I have been diagnosed with COPD for several years now. I had my first bout of pneumonia about 6 years ago and have had it several times since then. Recently I was in the hospital with a stay of 6 days this was week before last I think. My oxygen kept staying in the lower 80s when they took the oxygen off. So I am now at home on oxygen 24/7. Its been brought up that I have emphysema but not until an ER visit last night did a Dr answer yes that I have what she believes emphysema and pretty bad pulmonary fibrosis. The scarring I am aware started with my first bout of pneumonia. (that is at least when the Dr told me he saw scarring.It has been mentioned I have Mild CHF (Congestive Heart Failure). But that diagnosis has not been real

clear just brought up several times. If I remember correctly I've had (2) echo cardiograms the first was said to look good but the second one only a month later was said to see some mild CHF. This last 6 day hospital stay was very hard on me (the worse so far)!I've been very scared! This is my first time home on oxygen. I am scheduled to see a Pulmonary Specialist in Nov. There is many questions I have because it seems no one is being totally clear. My Mother died of emphysema at 59. With me being 48 I am pretty scared. I use to smoke for close to 22 years and stopped after mom died which has been close to 13 years.Thank you for being here and I look forward to participating in the group and knowing you all. Wishing all well...mischievouskitten (aka: Donna) Iowa

[Guest guest]

Sorry it had to be under these conditions....but your in the right place.....I've learned more about living with this disease rather than...........you know

<FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif"></FONT>

To: Breathe-Support Sent: Monday, October 5, 2009 6:14:24 PMSubject: Re: Hello, My Name is Donna

Nice to meet you too !!!Donna (Iowa)

From: Soulliere <johnsbatik (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Monday, October 5, 2009 11:45:10 AMSubject: Re: Hello, My Name is Donna

Donna

I was born and raised in Nebraska, glad to see someone from that region

<FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http:// us.i1.yimg. com/us.yimg. com/i/mesg/ tsmileys2/ 50.gif"></FONT>

From: Mischievous Kitten <mischievouskitten@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Monday, October 5, 2009 11:30:56 AMSubject: Re: Hello, My Name is Donna

Just a quick Thank you to all of you for the welcome. Wishing you all a good day!Donna (Iowa)

From: Beth <mbmurtha (AT) yahoo (DOT) . com>To: Breathe-Support@ yahoogroups. comSent: Sunday, October 4, 2009 8:52:55 PMSubject: Re: Hello, My Name is Donna

Donna,

Hi and welcome! I am sorry that you had reason to look for a group like this but since you did I'm glad that we are here for you to find! My name is Beth and I am the moderator of this group. I have fibrotic NSIP one of the many varieties of pulmonary fibrosis.

Do you know if you had a CT scan or just a chest x-ray? I would just encourage you to stay calm until you see the pulmonary specialist next month. We've had many people pass through here who were told they had PF but ultimately it was discovered they did not. I'll keep my fingers crossed that you don't have it either..

The most important thing you have to do now is rest and look after yourself. Use your oxygen the way it's been prescribed. Do you have an oximeter? (the little thing they put on the end of your finger to see what your oxygen levels are) If you don't you might want to consider purchasing one. You can get one for around $70 and it's an investment in your own safety. It is important for you especially though to use your oxygen carefully and the way it's prescribed. Because you apparently have restrictive lung disease (fibrosis) along with obstructive lung disease (COPD, emphysema) your situation is complex and not everything we discuss here will apply to you.

I'm sorry you are going through this.. I was 46 when I was diagnosed, had never smoked and had no history of lung disease in my family. It felt like a sucker punch. I do understand how you feel.

Please continue to ask any questions you have. We will help in any way we can!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: simply-irresistible <mischievouskitten@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Sun, October 4, 2009 9:00:46 PMSubject: Hello, My Name is Donna

I just thought I would take the time to introduce myself. This is my first post to the group. I am 48 female,living in Iowa for almost 5 years now. I am originally from Mo. but have traveled most of my life!I have been diagnosed with COPD for several years now.. I had my first bout of pneumonia about 6 years ago and have had it several times since then. Recently I was in the hospital with a stay of 6 days this was week before last I think. My oxygen kept staying in the lower 80s when they took the oxygen off. So I am now at home on oxygen 24/7. Its been brought up that I have emphysema but not until an ER visit last night did a Dr answer yes that I have what she believes emphysema and pretty bad pulmonary fibrosis. The scarring I am aware started with my first bout of pneumonia. (that is at least when the Dr told me he saw scarring.It has been mentioned I have Mild CHF (Congestive Heart Failure). But that diagnosis has not been real

clear just brought up several times. If I remember correctly I've had (2) echo cardiograms the first was said to look good but the second one only a month later was said to see some mild CHF. This last 6 day hospital stay was very hard on me (the worse so far)!I've been very scared! This is my first time home on oxygen. I am scheduled to see a Pulmonary Specialist in Nov. There is many questions I have because it seems no one is being totally clear. My Mother died of emphysema at 59. With me being 48 I am pretty scared. I use to smoke for close to 22 years and stopped after mom died which has been close to 13 years.Thank you for being here and I look forward to participating in the group and knowing you all. Wishing all well...mischievouskitten (aka: Donna) Iowa

[Guest guest]

Thank you Sher... and for the reminder that just because my mom left early does'nt mean that I will too. I am doing all I can to help myself and improve what I can!! I too have fibromyalgia among other things not yet listed! I love that we do not have an expiration date stamped on our fannies! LOL!!! I am happy to be here in this group! Have a great night!!Hugs, Donna (Iowa)To: Breathe-Support Sent: Monday, October 5, 2009 2:00:35 PMSubject: Re: Re: Hello, My Name is Donna

Hello Donna...want to welcome to our 'air family'. This is the best place you can be as we fight our common illnesses.

My mother died at 63 and I just knew I would too. Now I'm 71 and realized I worried for nothing! My time is MY time, not HER time.

That was an early death for you mom and it's hard not to remember.

You have quite a few dx (diagnosis) to be concerned about. Me too.

I have fibromyalgia and arthritis and other nuisance problems. But we learn from Peggy here that we do not have an expiration date stamped on our fannies!

Welcome.

MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there!

Re: Hello, My Name is Donna

DonnaYour story isn't unusual. However, also don't jump to conclusions ofhaving PF on the basis of it either. You haven't even seen the pulmonaryspecialist. Now, I don't know this specialist but the majority still arenot expert in PF so you may need a further specialist at an InterstitialLung Disease center.While Pneumonia can certainly cause some scarring and I guess that isfibrosis and lung so pulmonary fibrosis, its not necessarily what wenormally construe as the family of serious progressive diseases. Wait tofind out more definitively if you have damage that is progressing and,if so, what form of pulmonary fibrosis.After what you've been through, your saturation levels now and yourcurrent oxygen needs may reflect the recent trauma, COPD or PF but itsreally hard to know which. It will take more diagnosis by those trulyexpert to get a more definitive answer.>> I just thought I would take the time to introduce myself. This is myfirst post to the group. I am 48 female,living in Iowa for almost 5years now. I am originally from Mo. but have traveled most of my life!>> I have been diagnosed with COPD for several years now. I had my firstbout of pneumonia about 6 years ago and have had it several times sincethen. Recently I was in the hospital with a stay of 6 days this was weekbefore last I think. My oxygen kept staying in the lower 80s when theytook the oxygen off. So I am now at home on oxygen 24/7. Its beenbrought up that I have emphysema but not until an ER visit last nightdid a Dr answer yes that I have what she believes emphysema and prettybad pulmonary fibrosis. The scarring I am aware started with my firstbout of pneumonia. (that is at least when the Dr told me he sawscarring.>> It has been mentioned I have Mild CHF (Congestive Heart Failure). Butthat diagnosis has not been real clear just brought up several times. IfI remember correctly I've had (2) echo cardiograms the first was saidto look good but the second one only a month later was said to see somemild CHF.>> This last 6 day hospital stay was very hard on me (the worse so far)!> I've been very scared! This is my first time home on oxygen. I amscheduled to see a Pulmonary Specialist in Nov. There is many questionsI have because it seems no one is being totally clear.>> My Mother died of emphysema at 59. With me being 48 I am prettyscared. I use to smoke for close to 22 years and stopped after mom diedwhich has been close to 13 years.>> Thank you for being here and I look forward to participating in thegroup and knowing you all. Wishing all well...>> mischievouskitten (aka: Donna) Iowa>