Re: Hello, My Name is Donna

[Guest guest]

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

To: Breathe-Support Sent: 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]

Welcome Donna...boy you are in that tough zone right now. Lots of medical jargon being thrown at you. New diagnosis to add to the old..fear of what's ahead. Everyone on this List knows what it's like to be in that early Diagnosis State.

Hang on girl..you've reached a Forum where there are lots of experienced people who've lived with PF for quite a while. There are some with the complication of mixed PF + COPD.

Fear strikes at the darndest moments..usually when a girl is trying to get a good night's SLEEP....hop on the Forum when things get scary...talk to us..there's usually somebody awake.....I'm in Australia so I can be on the Board when lots of you lot should be tucked up in your beds. Geeta in Indai is in a different time zone & then there are the UK mob....somebody will be around!

Hugs,

in Oz

>> 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]

Donna

Your story isn't unusual. However, also don't jump to conclusions of

having PF on the basis of it either. You haven't even seen the pulmonary

specialist. Now, I don't know this specialist but the majority still are

not expert in PF so you may need a further specialist at an Interstitial

Lung Disease center.

While Pneumonia can certainly cause some scarring and I guess that is

fibrosis and lung so pulmonary fibrosis, its not necessarily what we

normally construe as the family of serious progressive diseases. Wait to

find 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 your

current oxygen needs may reflect the recent trauma, COPD or PF but its

really hard to know which. It will take more diagnosis by those truly

expert to get a more definitive answer.

>

> 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]

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>

To: Breathe-Support Sent: 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]

Hello Donna,Welcome to this wonderful group. I was a newbie just months ago even though I've been dx since 2002. So much information and wonderful love on this board. They are the one's who "get it" when you want to scream or something else pops up. I am from Wisconsin originally, my mom was from Storm Lake and Alta Iowa and I made many a drive across Iowa on Hwy 80, many a looooonnngggg drive. LOL. You are in the right place! I'm goin' on 8 years in Jan, on o2 24/7 5lpm at work and driving, 8lpm at home where I am more active. And I still work 40 hours a week as an Accountant. Good old German Stock ha ha.Dyane Phoenix Diabetes 96, IPF 02, Breast Cancer 02, Severe Sleep Apnea, Fibromyalgia, Lipodermaterscleosis, ad nauseum lol>> 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>