Re: All the terms and types of PF Joyce & Beth

[Guest guest]

color me fifteen shades of blue today, this crappy disease won't let me breathe very well today.. Hate when this happens. As to which is the faster or slower. I was feeling like they had it all wrong about IPF being so fastthen today a friend came to tell Happy B-Day and I realized we moved into our house four years ago today.. Back then It was MY house, now it seems like it belongs to someone else.So I am now living with the wind hose blowing the top if my head off. In somebody else's house. NOT REAL HAPPY TODAYBetter go take something or do something before this gets serious.. lolLove and Prayers, PeggyIPF  2004,  Florida"Worry looks around, Sorry looks back,  Faith looks up." Joyce,Oh color me cynical, color me confused, color me frustrated but most importantly color me STILL ALIVE!  As for what your chart said, I suppose you could say that your PH is secondary to your connective tissue disease and that the fibrosis is somewhere there in the middle. If you never had the connective tissue disease you likely never would have had either the fibrosis or the PH right? Who knows why they write what they write on our charts. Wanna hear something funny? The first time I saw Dr. on at Duke was last December. I got a copy of the dictated note in the mail a couple of weeks later. In the examination part of the note, Dr on stated, "Patient is pleasant, overweight woman with a normal gait in spite of using a walker."  I stopped reading....HUH? A walker??? What on earth is he talking about. I never used a walker in my life. The only thing I had with me that day was my rolling backpack with two D tanks in it.  I just tucked that away till I went to see him again and I asked him about it.  He read it and proceeded to turn red to the roots of his hair.  He could not have been more mortified. He apologized profusely and actually admitted he was probably thinking of someone else while he was dictating my note. I mean he had the medical facts right cause he had my chart in front of him when he was dictating but was describing my physical appearance from memory. We both had a good laugh and moved on. He won't forget who I am anymore I'd imagine. I guess my point is they're human too, they make mistakes. They use words we don't understand and sometimes write different things on our charts than they tell us. Which is why it's so important to do what you always say, remember we're going to battle against this disease, we're fighting for our lives and we have to look out for ourselves. We can't afford to treat the doctors like gods, they're human just like us. We MUST ask questions over and over until we understand and research on our own, seek out support if we want to LIVE! Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive       All the terms and types of PFMB,Even with open lung biopsy and countless HRCTs and scans....my disease has been labeled just about every one of the terms.  The very first thing it was called was Lupus Pneumonitis, which didn't sound so bad.  I knew nothing about nothing.  Each time I see a different pulmonologist or go through testing at another facility, the diagnosis comes back different.  And yes, even Idiopathic.  At the end of it all, which seems closer every day, a duck is still a duck.  An ugly duckling!Cynical, yeah.  Smarter than ten years ago, yeah.  Alive, yeah.  Happy about that, yeah.  Thankful, oh yeah.  They can call it whatever they want.  I know it is plain old Pulmonary Fibrosis secondary to numberous autoimune diseases or to medications like Methotrexate for those diseases. When I got my diagnostic list from my recent hospital stay, there were 8 different diseases, etc. listed.  The top one said Severe Pulmonary Hypertension due to Connective Tissue Disease.  Under that was End Stage Pulmonary Fibrosis.  I would have thought it would say the hypertension was due to the fibrosis.  Which it was.  Any ideas, nursey?Hugs, Joyce D.Pulmonary Fibrosis 1997    Bronchiectasis 2004    Pulmonary Hypertension 2008  Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc)  Rejected for Transplant 2006 .....I will not forget you.  Behold, I have engraved you on the palm of my hands.  Isaiah 49: 15-16  >> ,> You're right most doctors do call it pneumonitis but either word is correct. The definition of both words is an inflammatory illness of the lung. Most of us think of pneumonia as an infection that is treated with antibiotics. If I were guessing I'd say that's how our type of lung disease came to be referred to as pneumonitis, meaning an inflammatory illness of the lungs not involving an infection. > I find it so confusing trying to sort out the terminology! > Beth > Age 48 Fibrotic NSIP 06/06> > Change everything. Love and Forgive

[Guest guest]

You make me laugh peggyevery time i read one of your post's I always have a smile somewhere in the readingyou are an inspirationBRETTcolor me fifteen shades of blue today, this crappy disease won't let me breathe very well today.. Hate when this happens. As to which is the faster or slower. I was feeling like they had it all wrong about IPF being so fastthen today a friend came to tell Happy B-Day and I realized we moved into our house four years ago today.. Back then It was MY house, now it seems like it belongs to someone else.So I am now living with the wind hose blowing the top if my head off. In somebody else's house. NOT REAL HAPPY TODAYBetter go take something or do something before this gets serious.. lolLove and Prayers, PeggyIPF 2004, Florida"Worry looks around, Sorry looks back, Faith looks up."Joyce,Oh color me cynical, color me confused, color me frustrated but most importantly color me STILL ALIVE! As for what your chart said, I suppose you could say that your PH is secondary to your connective tissue disease and that the fibrosis is somewhere there in the middle. If you never had the connective tissue disease you likely never would have had either the fibrosis or the PH right? Who knows why they write what they write on our charts. Wanna hear something funny? The first time I saw Dr. on at Duke was last December. I got a copy of the dictated note in the mail a couple of weeks later. In the examination part of the note, Dr on stated, "Patient is pleasant, overweight woman with a normal gait in spite of using a walker." I stopped reading....HUH? A walker??? What on earth is he talking about. I never used a walker in my life. The only thing I had with me that day was my rolling backpack with two D tanks in it. I just tucked that away till I went to see him again and I asked him about it. He read it and proceeded to turn red to the roots of his hair. He could not have been more mortified. He apologized profusely and actually admitted he was probably thinking of someone else while he was dictating my note. I mean he had the medical facts right cause he had my chart in front of him when he was dictating but was describing my physical appearance from memory. We both had a good laugh and moved on. He won't forget who I am anymore I'd imagine. I guess my point is they're human too, they make mistakes. They use words we don't understand and sometimes write different things on our charts than they tell us. Which is why it's so important to do what you always say, remember we're going to battle against this disease, we're fighting for our lives and we have to look out for ourselves. We can't afford to treat the doctors like gods, they're human just like us. We MUST ask questions over and over until we understand and research on our own, seek out support if we want to LIVE! Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive All the terms and types of PFMB,Even with open lung biopsy and countless HRCTs and scans....my disease has been labeled just about every one of the terms. The very first thing it was called was Lupus Pneumonitis, which didn't sound so bad. I knew nothing about nothing. Each time I see a different pulmonologist or go through testing at another facility, the diagnosis comes back different. And yes, even Idiopathic. At the end of it all, which seems closer every day, a duck is still a duck. An ugly duckling!Cynical, yeah. Smarter than ten years ago, yeah. Alive, yeah. Happy about that, yeah. Thankful, oh yeah. They can call it whatever they want. I know it is plain old Pulmonary Fibrosis secondary to numberous autoimune diseases or to medications like Methotrexate for those diseases. When I got my diagnostic list from my recent hospital stay, there were 8 different diseases, etc. listed. The top one said Severe Pulmonary Hypertension due to Connective Tissue Disease. Under that was End Stage Pulmonary Fibrosis. I would have thought it would say the hypertension was due to the fibrosis. Which it was. Any ideas, nursey?Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 >> ,> You're right most doctors do call it pneumonitis but either word is correct. The definition of both words is an inflammatory illness of the lung. Most of us think of pneumonia as an infection that is treated with antibiotics. If I were guessing I'd say that's how our type of lung disease came to be referred to as pneumonitis, meaning an inflammatory illness of the lungs not involving an infection. > I find it so confusing trying to sort out the terminology! > Beth > Age 48 Fibrotic NSIP 06/06> > Change everything. Love and Forgive brett bowserbrett@...

[Guest guest]

Peggy,

Hey you...I hope you get feeling better quick. Are your sats low today, do you feel sob? Just put your feet up and the recliner back and let wait on you.

Don't make me come down there....LOL I wish I could.

Love and hugs

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

All the terms and types of PF

MB,

Even with open lung biopsy and countless HRCTs and scans....my disease has been labeled just about every one of the terms. The very first thing it was called was Lupus Pneumonitis, which didn't sound so bad. I knew nothing about nothing. Each time I see a different pulmonologist or go through testing at another facility, the diagnosis comes back different. And yes, even Idiopathic. At the end of it all, which seems closer every day, a duck is still a duck. An ugly duckling!

Cynical, yeah. Smarter than ten years ago, yeah. Alive, yeah. Happy about that, yeah. Thankful, oh yeah. They can call it whatever they want. I know it is plain old Pulmonary Fibrosis secondary to numberous autoimune diseases or to medications like Methotrexate for those diseases.

When I got my diagnostic list from my recent hospital stay, there were 8 different diseases, etc. listed. The top one said Severe Pulmonary Hypertension due to Connective Tissue Disease. Under that was End Stage Pulmonary Fibrosis. I would have thought it would say the hypertension was due to the fibrosis. Which it was. Any ideas, nursey?

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16

>> ,> You're right most doctors do call it pneumonitis but either word is correct. The definition of both words is an inflammatory illness of the lung. Most of us think of pneumonia as an infection that is treated with antibiotics. If I were guessing I'd say that's how our type of lung disease came to be referred to as pneumonitis, meaning an inflammatory illness of the lungs not involving an infection. > I find it so confusing trying to sort out the terminology! > Beth > Age 48 Fibrotic NSIP 06/06> > Change everything. Love and Forgive

[Guest guest]

WOW Thanks Brett, I am setting here looking at my dogs ( who only love my husband these days) look at me. I have told them not to bother me today. They don't listen very well..lolI am glad I can make someone laugh I sure don't feel funny.. still wanna shoot something.. I think it's gonna be a squirrel. BB gun is loaded and waiting. I must need a pretty beautiful baby girl hug. Can you take care of that for me??? Thanks. Nothin like it. Love and Prayers, PeggyIPF  2004,  Florida"Worry looks around, Sorry looks back,  Faith looks up." You make me laugh peggyevery time i read one of your post's I always have a smile somewhere in the readingyou are an inspirationBRETTcolor me fifteen shades of blue today, this crappy disease won't let me breathe very well today.. Hate when this happens. As to which is the faster or slower. I was feeling like they had it all wrong about IPF being so fastthen today a friend came to tell Happy B-Day and I realized we moved into our house four years ago today.. Back then It was MY house, now it seems like it belongs to someone else.So I am now living with the wind hose blowing the top if my head off. In somebody else's house. NOT REAL HAPPY TODAYBetter go take something or do something before this gets serious.. lolLove and Prayers, PeggyIPF  2004,  Florida"Worry looks around, Sorry looks back, Faith looks up."Joyce,Oh color me cynical, color me confused, color me frustrated but most importantly color me STILL ALIVE!  As for what your chart said, I suppose you could say that your PH is secondary to your connective tissue disease and that the fibrosis is somewhere there in the middle. If you never had the connective tissue disease you likely never would have had either the fibrosis or the PH right? Who knows why they write what they write on our charts. Wanna hear something funny? The first time I saw Dr. on at Duke was last December. I got a copy of the dictated note in the mail a couple of weeks later. In the examination part of the note, Dr on stated, "Patient is pleasant, overweight woman with a normal gait in spite of using a walker."  I stopped reading....HUH? A walker??? What on earth is he talking about. I never used a walker in my life. The only thing I had with me that day was my rolling backpack with two D tanks in it.  I just tucked that away till I went to see him again and I asked him about it.  He read it and proceeded to turn red to the roots of his hair.  He could not have been more mortified. He apologized profusely and actually admitted he was probably thinking of someone else while he was dictating my note. I mean he had the medical facts right cause he had my chart in front of him when he was dictating but was describing my physical appearance from memory. We both had a good laugh and moved on. He won't forget who I am anymore I'd imagine. I guess my point is they're human too, they make mistakes. They use words we don't understand and sometimes write different things on our charts than they tell us. Which is why it's so important to do what you always say, remember we're going to battle against this disease, we're fighting for our lives and we have to look out for ourselves. We can't afford to treat the doctors like gods, they're human just like us. We MUST ask questions over and over until we understand and research on our own, seek out support if we want to LIVE! Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive       All the terms and types of PFMB,Even with open lung biopsy and countless HRCTs and scans....my disease has been labeled just about every one of the terms.  The very first thing it was called was Lupus Pneumonitis, which didn't sound so bad.  I knew nothing about nothing.  Each time I see a different pulmonologist or go through testing at another facility, the diagnosis comes back different.  And yes, even Idiopathic.  At the end of it all, which seems closer every day, a duck is still a duck.  An ugly duckling!Cynical, yeah.  Smarter than ten years ago, yeah.  Alive, yeah.  Happy about that, yeah.  Thankful, oh yeah.  They can call it whatever they want.  I know it is plain old Pulmonary Fibrosis secondary to numberous autoimune diseases or to medications like Methotrexate for those diseases. When I got my diagnostic list from my recent hospital stay, there were 8 different diseases, etc. listed.  The top one said Severe Pulmonary Hypertension due to Connective Tissue Disease.  Under that was End Stage Pulmonary Fibrosis.  I would have thought it would say the hypertension was due to the fibrosis.  Which it was.  Any ideas, nursey?Hugs, Joyce D.Pulmonary Fibrosis 1997    Bronchiectasis 2004    Pulmonary Hypertension 2008  Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc)  Rejected for Transplant 2006 .....I will not forget you.  Behold, I have engraved you on the palm of my hands.  Isaiah 49: 15-16  >> ,> You're right most doctors do call it pneumonitis but either word is correct. The definition of both words is an inflammatory illness of the lung. Most of us think of pneumonia as an infection that is treated with antibiotics. If I were guessing I'd say that's how our type of lung disease came to be referred to as pneumonitis, meaning an inflammatory illness of the lungs not involving an infection. > I find it so confusing trying to sort out the terminology! > Beth > Age 48 Fibrotic NSIP 06/06> > Change everything. Love and Forgivebrett bowserbrettvectordist

[Guest guest]

LOL I am kicked back but I think I'm going to cook dinner for the Birthday Boy. That should helpthe mood. My sats are Ok I just have to be sure to turn it UP when I'm going to be on my feet for a while. OH YEA, YOU NEED TO COME DOWN...  ;} Love and Prayers, PeggyIPF  2004,  Florida"Worry looks around, Sorry looks back,  Faith looks up." Peggy,Hey you...I hope you get feeling better quick. Are your sats low today, do you feel sob?  Just put your feet up and the recliner back and let wait on you.Don't make me come down there....LOL  I wish I could.Love and hugs Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive       All the terms and types of PFMB,Even with open lung biopsy and countless HRCTs and scans....my disease has been labeled just about every one of the terms.  The very first thing it was called was Lupus Pneumonitis, which didn't sound so bad.  I knew nothing about nothing.  Each time I see a different pulmonologist or go through testing at another facility, the diagnosis comes back different.  And yes, even Idiopathic.  At the end of it all, which seems closer every day, a duck is still a duck.  An ugly duckling!Cynical, yeah.  Smarter than ten years ago, yeah.  Alive, yeah.  Happy about that, yeah.  Thankful, oh yeah.  They can call it whatever they want.  I know it is plain old Pulmonary Fibrosis secondary to numberous autoimune diseases or to medications like Methotrexate for those diseases. When I got my diagnostic list from my recent hospital stay, there were 8 different diseases, etc. listed.  The top one said Severe Pulmonary Hypertension due to Connective Tissue Disease.  Under that was End Stage Pulmonary Fibrosis.  I would have thought it would say the hypertension was due to the fibrosis.  Which it was.  Any ideas, nursey?Hugs, Joyce D.Pulmonary Fibrosis 1997    Bronchiectasis 2004    Pulmonary Hypertension 2008  Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc)  Rejected for Transplant 2006 .....I will not forget you.  Behold, I have engraved you on the palm of my hands.  Isaiah 49: 15-16  >> ,> You're right most doctors do call it pneumonitis but either word is correct. The definition of both words is an inflammatory illness of the lung. Most of us think of pneumonia as an infection that is treated with antibiotics. If I were guessing I'd say that's how our type of lung disease came to be referred to as pneumonitis, meaning an inflammatory illness of the lungs not involving an infection. > I find it so confusing trying to sort out the terminology! > Beth > Age 48 Fibrotic NSIP 06/06> > Change everything. Love and Forgive

[Guest guest]

Peggy.... sorry your day is a hard one. Every movement and anything you have to do sucks doesn't it.

I haven't done much today myself.

Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there!

All the terms and types of PF

MB,

Even with open lung biopsy and countless HRCTs and scans....my disease has been labeled just about every one of the terms. The very first thing it was called was Lupus Pneumonitis, which didn't sound so bad. I knew nothing about nothing. Each time I see a different pulmonologist or go through testing at another facility, the diagnosis comes back different. And yes, even Idiopathic. At the end of it all, which seems closer every day, a duck is still a duck. An ugly duckling!

Cynical, yeah. Smarter than ten years ago, yeah. Alive, yeah. Happy about that, yeah. Thankful, oh yeah. They can call it whatever they want. I know it is plain old Pulmonary Fibrosis secondary to numberous autoimune diseases or to medications like Methotrexate for those diseases.

When I got my diagnostic list from my recent hospital stay, there were 8 different diseases, etc. listed. The top one said Severe Pulmonary Hypertension due to Connective Tissue Disease. Under that was End Stage Pulmonary Fibrosis. I would have thought it would say the hypertension was due to the fibrosis. Which it was. Any ideas, nursey?

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16

>> ,> You're right most doctors do call it pneumonitis but either word is correct. The definition of both words is an inflammatory illness of the lung. Most of us think of pneumonia as an infection that is treated with antibiotics. If I were guessing I'd say that's how our type of lung disease came to be referred to as pneumonitis, meaning an inflammatory illness of the lungs not involving an infection. > I find it so confusing trying to sort out the terminology! > Beth > Age 48 Fibrotic NSIP 06/06> > Change everything. Love and Forgive

[Guest guest]

Peggy,

Time for a Ginger prayer....again. We just read this lately, but I made copies and I read it almost every day, now.

Lord, I am saddened that my illness denies me complete control of my life. I am unhappy that it has snatched away total freedom to fashion the pattern of my days. I am angry that it has made me dependant and at the mercy of others. Guard me against complaining too much about this loss of independance, Lord and keep me from pining for life as it used to be. Let me be accepting of all that makes my heart heavy, all that dampens my spirit. Let me count my blessings, not my trials. Let me treasure my happiness, not my adversity. kiss kiss Ginger May 07

I can't stand it when you are blue. Yet, I know exactly what you are talking about, because I feel the same way. A woman wants to have her home, do her own work and decorate and keep it like she wants. We are losing that ability and it is so hard. I get so angry that others are making decisions about what goes in what drawer or where the towels are stacked and how. If it were not for Xanax, I would have killed someone by now because nobody listents to me.

You have such a lovely home and I know that you take great pride in it. In pictures, I can see your special touches everywhere. It is o.k. to resent and regret the loss of strength to keep it like you want to.

I will be praying for you tonight.

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 > >> > ,> > You're right most doctors do call it pneumonitis but either word > is correct. The definition of both words is an inflammatory illness > of the lung. Most of us think of pneumonia as an infection that is > treated with antibiotics. If I were guessing I'd say that's how our > type of lung disease came to be referred to as pneumonitis, meaning > an inflammatory illness of the lungs not involving an infection.> > I find it so confusing trying to sort out the terminology!> > Beth> > Age 48 Fibrotic NSIP 06/06> >> > Change everything. Love and Forgive>

[Guest guest]

Oh how I miss her and her prayers. I have been thinking about the fact she was DX the same time I was.. Now that is scarrrrrry. How long has she been gone now? Just unbelievable this disease cam just come in and take over. I have a news flash--- I am still Praising..  Thanks for this.  Love and Prayers, PeggyIPF  2004,  Florida"Worry looks around, Sorry looks back,  Faith looks up." Peggy,Time for a Ginger prayer....again.  We just read this lately, but I made copies and I read it almost every day, now.Lord, I am saddened that my illness denies me complete control of my life.  I am unhappy that it has snatched away total freedom to fashion the pattern of my days.  I am angry that it has made me dependant and at the mercy of others.  Guard me against complaining too much about this loss of independance, Lord and keep me from pining for life as it used to be.  Let me be accepting of all that makes my heart heavy, all that dampens my spirit.  Let me count my blessings, not my trials.  Let me treasure my happiness, not my adversity. kiss kiss Ginger May 07I can't stand it when you are blue.  Yet, I know exactly what you are talking about, because I feel the same way.  A woman wants to have her home, do her own work and decorate and keep it like she wants.  We are losing that ability and it is so hard.  I get so angry that others are making decisions about what goes in what drawer or where the towels are stacked and how.  If it were not for Xanax, I would have killed someone by now because nobody listents to me. You have such a lovely home and I know that you take great pride in it.  In pictures, I can see your special touches everywhere.  It is o.k. to resent and regret the loss of strength to keep it like you want to. I will be praying for you tonight. Hugs, Joyce D.Pulmonary Fibrosis 1997    Bronchiectasis 2004    Pulmonary Hypertension 2008  Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc)  Rejected for Transplant 2006 .....I will not forget you.  Behold, I have engraved you on the palm of my hands.  Isaiah 49: 15-16 > >> > ,> > You're right most doctors do call it pneumonitis but either word > is correct. The definition of both words is an inflammatory illness > of the lung. Most of us think of pneumonia as an infection that is > treated with antibiotics. If I were guessing I'd say that's how our > type of lung disease came to be referred to as pneumonitis, meaning > an inflammatory illness of the lungs not involving an infection.> > I find it so confusing trying to sort out the terminology!> > Beth> > Age 48 Fibrotic NSIP 06/06> >> > Change everything. Love and Forgive>

[Guest guest]

Peggy,

One year in May.

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16> > >> > > ,> > > You're right most doctors do call it pneumonitis but either word> > is correct. The definition of both words is an inflammatory illness> > of the lung. Most of us think of pneumonia as an infection that is> > treated with antibiotics. If I were guessing I'd say that's how our> > type of lung disease came to be referred to as pneumonitis, meaning> > an inflammatory illness of the lungs not involving an infection.> > > I find it so confusing trying to sort out the terminology!> > > Beth> > > Age 48 Fibrotic NSIP 06/06> > >> > > Change everything. Love and Forgive> >>

[Guest guest]

Peggy here is your big hug WOW Thanks Brett, I am setting here looking at my dogs ( who only love my husband these days) look at me. I have told them not to bother me today. They don't listen very well..lolI am glad I can make someone laugh I sure don't feel funny.. still wanna shoot something.. I think it's gonna be a squirrel. BB gun is loaded and waiting. I must need a pretty beautiful baby girl hug. Can you take care of that for me??? Thanks. Nothin like it. ;)Love and Prayers, PeggyIPF 2004, Florida"Worry looks around, Sorry looks back, Faith looks up."You make me laugh peggyevery time i read one of your post's I always have a smile somewhere in the readingyou are an inspirationBRETTcolor me fifteen shades of blue today, this crappy disease won't let me breathe very well today.. Hate when this happens. As to which is the faster or slower. I was feeling like they had it all wrong about IPF being so fastthen today a friend came to tell Happy B-Day and I realized we moved into our house four years ago today.. Back then It was MY house, now it seems like it belongs to someone else.So I am now living with the wind hose blowing the top if my head off. In somebody else's house. NOT REAL HAPPY TODAYBetter go take something or do something before this gets serious.. lolLove and Prayers, PeggyIPF 2004, Florida"Worry looks around, Sorry looks back, Faith looks up."Joyce,Oh color me cynical, color me confused, color me frustrated but most importantly color me STILL ALIVE! As for what your chart said, I suppose you could say that your PH is secondary to your connective tissue disease and that the fibrosis is somewhere there in the middle. If you never had the connective tissue disease you likely never would have had either the fibrosis or the PH right? Who knows why they write what they write on our charts. Wanna hear something funny? The first time I saw Dr. on at Duke was last December. I got a copy of the dictated note in the mail a couple of weeks later. In the examination part of the note, Dr on stated, "Patient is pleasant, overweight woman with a normal gait in spite of using a walker." I stopped reading....HUH? A walker??? What on earth is he talking about. I never used a walker in my life. The only thing I had with me that day was my rolling backpack with two D tanks in it. I just tucked that away till I went to see him again and I asked him about it. He read it and proceeded to turn red to the roots of his hair. He could not have been more mortified. He apologized profusely and actually admitted he was probably thinking of someone else while he was dictating my note. I mean he had the medical facts right cause he had my chart in front of him when he was dictating but was describing my physical appearance from memory. We both had a good laugh and moved on. He won't forget who I am anymore I'd imagine. I guess my point is they're human too, they make mistakes. They use words we don't understand and sometimes write different things on our charts than they tell us. Which is why it's so important to do what you always say, remember we're going to battle against this disease, we're fighting for our lives and we have to look out for ourselves. We can't afford to treat the doctors like gods, they're human just like us. We MUST ask questions over and over until we understand and research on our own, seek out support if we want to LIVE! Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive All the terms and types of PFMB,Even with open lung biopsy and countless HRCTs and scans....my disease has been labeled just about every one of the terms. The very first thing it was called was Lupus Pneumonitis, which didn't sound so bad. I knew nothing about nothing. Each time I see a different pulmonologist or go through testing at another facility, the diagnosis comes back different. And yes, even Idiopathic. At the end of it all, which seems closer every day, a duck is still a duck. An ugly duckling!Cynical, yeah. Smarter than ten years ago, yeah. Alive, yeah. Happy about that, yeah. Thankful, oh yeah. They can call it whatever they want. I know it is plain old Pulmonary Fibrosis secondary to numberous autoimune diseases or to medications like Methotrexate for those diseases. When I got my diagnostic list from my recent hospital stay, there were 8 different diseases, etc. listed. The top one said Severe Pulmonary Hypertension due to Connective Tissue Disease. Under that was End Stage Pulmonary Fibrosis. I would have thought it would say the hypertension was due to the fibrosis. Which it was. Any ideas, nursey?Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 >> ,> You're right most doctors do call it pneumonitis but either word is correct. The definition of both words is an inflammatory illness of the lung. Most of us think of pneumonia as an infection that is treated with antibiotics. If I were guessing I'd say that's how our type of lung disease came to be referred to as pneumonitis, meaning an inflammatory illness of the lungs not involving an infection. > I find it so confusing trying to sort out the terminology! > Beth > Age 48 Fibrotic NSIP 06/06> > Change everything. Love and Forgivebrett bowserbrettvectordist brett bowserbrett@...

[Guest guest]

Oh how sweet!! She is absolutely adoreable!! Carobrett bowser wrote: Peggy here is your big hug> WOW Thanks Brett, I am setting here looking at my dogs ( who only > love my husband these days) look at me. I have told them not to > bother me today. They don't listen very well..lol>> I am glad I can make someone laugh I sure don't feel funny.. still > wanna shoot something.. I think it's gonna be a squirrel. BB gun is > loaded and waiting.> I must need a pretty beautiful baby girl hug. Can you take care of > that for me??? Thanks. Nothin like it. >>>> Love and Prayers, Peggy> IPF 2004, Florida>

"Worry looks around,> Sorry looks back,> Faith looks up.">>>>> > You make me laugh peggy>> every time i read one of your post's> I always have a smile somewhere in the reading> you are an inspiration> BRETT> >> color me fifteen shades of blue today, this crappy disease won't >> let me breathe very well today.. Hate when this happens.>>>>>> As to which is the faster or slower. I was feeling like they had it >> all wrong about IPF being so fast>> then today a friend came to tell Happy B-Day and I realized we >> moved into our house four years ago today.. Back then It was MY >> house, now it seems like it belongs to someone else.>> So I am now living with the wind hose blowing the

top if my head >> off. In somebody else's house. NOT REAL HAPPY TODAY>> Better go take something or do something before this gets serious.. >> lol>>>>>> Love and Prayers, Peggy>> IPF 2004, Florida>> "Worry looks around,>> Sorry looks back,>> Faith looks up.">>>>>>>>>> >>>> Joyce,>>>> Oh color me cynical, color me confused, color me frustrated but >> most importantly color me STILL ALIVE!>>>>>> As for what your chart said, I suppose you could say that your PH >> is secondary to your connective tissue disease and that the >> fibrosis is somewhere there in the middle. If you never had the >> connective tissue disease you likely never would have had either >> the

fibrosis or the PH right? Who knows why they write what they >> write on our charts.>>>>>> Wanna hear something funny? The first time I saw Dr. on at >> Duke was last December. I got a copy of the dictated note in the >> mail a couple of weeks later. In the examination part of the note, >> Dr on stated, "Patient is pleasant, overweight woman with a >> normal gait in spite of using a walker." I stopped reading....HUH? >> A walker??? What on earth is he talking about. I never used a >> walker in my life. The only thing I had with me that day was my >> rolling backpack with two D tanks in it. I just tucked that away >> till I went to see him again and I asked him about it. He read it >> and proceeded to turn red to the roots of his hair. He could not >> have been more mortified. He apologized profusely and actually

>> admitted he was probably thinking of someone else while he was >> dictating my note. I mean he had the medical facts right cause he >> had my chart in front of him when he was dictating but was >> describing my physical appearance from memory. We both had a good >> laugh and moved on. He won't forget who I am anymore I'd imagine.>>>>>> I guess my point is they're human too, they make mistakes. They use >> words we don't understand and sometimes write different things on >> our charts than they tell us. Which is why it's so important to do >> what you always say, remember we're going to battle against this >> disease, we're fighting for our lives and we have to look out for >> ourselves. We can't afford to treat the doctors like gods, they're >> human just like us. We MUST ask questions over and over until we >> understand

and research on our own, seek out support if we want to >> LIVE!>>>>>>>> Beth>> Age 48 Fibrotic NSIP 06/06>>>> Change everything. Love and Forgive>>>>>>>>>> All the terms and types of PF>>>>>> MB,>>>> Even with open lung biopsy and countless HRCTs and scans....my >> disease has been labeled just about every one of the terms. The >> very first thing it was called was Lupus Pneumonitis, which didn't >> sound so bad. I knew nothing about nothing. Each time I see a >> different pulmonologist or go through testing at another facility, >>

the diagnosis comes back different. And yes, even Idiopathic. At >> the end of it all, which seems closer every day, a duck is still a >> duck. An ugly duckling!>>>> Cynical, yeah. Smarter than ten years ago, yeah. Alive, yeah. >> Happy about that, yeah. Thankful, oh yeah. They can call it >> whatever they want. I know it is plain old Pulmonary Fibrosis >> secondary to numberous autoimune diseases or to medications like >> Methotrexate for those diseases.>>>> When I got my diagnostic list from my recent hospital stay, there >> were 8 different diseases, etc. listed. The top one said Severe >> Pulmonary Hypertension due to Connective Tissue Disease. Under >> that was End Stage Pulmonary Fibrosis. I would have thought it >> would say the hypertension was due to the fibrosis. Which it was. >> Any ideas,

nursey?>>>> Hugs, Joyce D.>> Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary >> Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, >> Sjogren's, etc) Rejected for Transplant 2006>> .....I will not forget you. Behold, I have engraved you on the >> palm of my hands. Isaiah 49: 15-16>>>>>>>> >> >>> > ,>> > You're right most doctors do call it pneumonitis but either word >> is correct. The definition of both words is an inflammatory illness >> of the lung. Most of us think of pneumonia as an infection that is >> treated with antibiotics. If I were guessing I'd say that's how our >> type of lung disease came to be referred to as pneumonitis, meaning >> an inflammatory illness

of the lungs not involving an infection.>> > I find it so confusing trying to sort out the terminology!>> > Beth>> > Age 48 Fibrotic NSIP 06/06>> >>> > Change everything. Love and Forgive>>>>>>>>>>>> brett bowser> brett@...>>>>>>> brett bowserbrett@...CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi __________________________________________________

[Guest guest]

Brett,

How can you stand it???? She is absolutely precious!!

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

All the terms and types of PF

MB,

Even with open lung biopsy and countless HRCTs and scans....my disease has been labeled just about every one of the terms. The very first thing it was called was Lupus Pneumonitis, which didn't sound so bad. I knew nothing about nothing. Each time I see a different pulmonologist or go through testing at another facility, the diagnosis comes back different. And yes, even Idiopathic. At the end of it all, which seems closer every day, a duck is still a duck. An ugly duckling!

Cynical, yeah. Smarter than ten years ago, yeah. Alive, yeah. Happy about that, yeah. Thankful, oh yeah. They can call it whatever they want. I know it is plain old Pulmonary Fibrosis secondary to numberous autoimune diseases or to medications like Methotrexate for those diseases.

When I got my diagnostic list from my recent hospital stay, there were 8 different diseases, etc. listed. The top one said Severe Pulmonary Hypertension due to Connective Tissue Disease. Under that was End Stage Pulmonary Fibrosis. I would have thought it would say the hypertension was due to the fibrosis. Which it was. Any ideas, nursey?

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16

>> ,> You're right most doctors do call it pneumonitis but either word is correct. The definition of both words is an inflammatory illness of the lung. Most of us think of pneumonia as an infection that is treated with antibiotics. If I were guessing I'd say that's how our type of lung disease came to be referred to as pneumonitis, meaning an inflammatory illness of the lungs not involving an infection. > I find it so confusing trying to sort out the terminology! > Beth > Age 48 Fibrotic NSIP 06/06> > Change everything. Love and Forgive

brett bowser

brettvectordist (DOT) com

brett bowser

brett@...

[Guest guest]

Thank you MBshe is my everythingwhen Im at work and having a bad day I can just glance up at her picture and everything is not so badBrett,How can you stand it???? She is absolutely precious!! Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive All the terms and types of PFMB,Even with open lung biopsy and countless HRCTs and scans....my disease has been labeled just about every one of the terms. The very first thing it was called was Lupus Pneumonitis, which didn't sound so bad. I knew nothing about nothing. Each time I see a different pulmonologist or go through testing at another facility, the diagnosis comes back different. And yes, even Idiopathic. At the end of it all, which seems closer every day, a duck is still a duck. An ugly duckling!Cynical, yeah. Smarter than ten years ago, yeah. Alive, yeah. Happy about that, yeah. Thankful, oh yeah. They can call it whatever they want. I know it is plain old Pulmonary Fibrosis secondary to numberous autoimune diseases or to medications like Methotrexate for those diseases. When I got my diagnostic list from my recent hospital stay, there were 8 different diseases, etc. listed. The top one said Severe Pulmonary Hypertension due to Connective Tissue Disease. Under that was End Stage Pulmonary Fibrosis. I would have thought it would say the hypertension was due to the fibrosis. Which it was. Any ideas, nursey?Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 >> ,> You're right most doctors do call it pneumonitis but either word is correct. The definition of both words is an inflammatory illness of the lung. Most of us think of pneumonia as an infection that is treated with antibiotics. If I were guessing I'd say that's how our type of lung disease came to be referred to as pneumonitis, meaning an inflammatory illness of the lungs not involving an infection. > I find it so confusing trying to sort out the terminology! > Beth > Age 48 Fibrotic NSIP 06/06> > Change everything. Love and Forgivebrett bowserbrettvectordist (DOT) combrett bowserbrett@... brett bowserbrett@...

[Guest guest]

Just brings joy to my heart looking at her!! I so miss when my kids were little! They are all grown now, but I have my grandbabies and they are my pride and joy!! Carobrett bowser wrote: Thank you MBshe is my everythingwhen Im at work and having a bad day I can just glanceup at her picture and everything is not so bad> Brett,>> How can you stand it???? She is absolutely precious!!>>>> Beth> Age 48 Fibrotic NSIP 06/06>> Change everything. Love and Forgive>>>>> All the terms and types

of PF>>>>>>>>> MB,>>>>>> Even with open lung biopsy and countless HRCTs and scans....my >>> disease has been labeled just about every one of the terms. The >>> very first thing it was called was Lupus Pneumonitis, which didn't >>> sound so bad. I knew nothing about nothing. Each time I see a >>> different pulmonologist or go through testing at another facility, >>> the diagnosis comes back different. And yes, even Idiopathic. At >>> the end of it all, which seems closer every day, a duck is still a >>> duck. An ugly duckling!>>>>>> Cynical, yeah. Smarter than ten years ago, yeah. Alive, yeah. >>> Happy about that, yeah. Thankful, oh yeah. They can call it >>> whatever they want. I know it is plain old Pulmonary Fibrosis >>> secondary to numberous autoimune

diseases or to medications like >>> Methotrexate for those diseases.>>>>>> When I got my diagnostic list from my recent hospital stay, there >>> were 8 different diseases, etc. listed. The top one said Severe >>> Pulmonary Hypertension due to Connective Tissue Disease. Under >>> that was End Stage Pulmonary Fibrosis. I would have thought it >>> would say the hypertension was due to the fibrosis. Which it >>> was. Any ideas, nursey?>>>>>> Hugs, Joyce D.>>> Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary >>> Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, >>> Sjogren's, etc) Rejected for Transplant 2006>>> .....I will not forget you. Behold, I have engraved you on the >>> palm of my hands. Isaiah 49:

15-16>>>>>>>>>>>> >>> >>>> > ,>>> > You're right most doctors do call it pneumonitis but either word >>> is correct. The definition of both words is an inflammatory >>> illness of the lung. Most of us think of pneumonia as an infection >>> that is treated with antibiotics. If I were guessing I'd say >>> that's how our type of lung disease came to be referred to as >>> pneumonitis, meaning an inflammatory illness of the lungs not >>> involving an infection.>>> > I find it so confusing trying to sort out the terminology!>>> > Beth>>> > Age 48 Fibrotic NSIP 06/06>>> >>>> > Change everything. Love and

Forgive>>>>>>>>>>>>>>>>>>> brett bowser>> brettvectordist (DOT) com>>>>>>>>>>>>>> brett bowser> brett@...>>>>>brett bowserbrett@...CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi __________________________________________________

[Guest guest]

Brett...that baby-smile is so precious! Lucky you to have her all the time!

Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there!

All the terms and types of PF

MB,

Even with open lung biopsy and countless HRCTs and scans....my disease has been labeled just about every one of the terms. The very first thing it was called was Lupus Pneumonitis, which didn't sound so bad. I knew nothing about nothing. Each time I see a different pulmonologist or go through testing at another facility, the diagnosis comes back different. And yes, even Idiopathic. At the end of it all, which seems closer every day, a duck is still a duck. An ugly duckling!

Cynical, yeah. Smarter than ten years ago, yeah. Alive, yeah. Happy about that, yeah. Thankful, oh yeah. They can call it whatever they want. I know it is plain old Pulmonary Fibrosis secondary to numberous autoimune diseases or to medications like Methotrexate for those diseases.

When I got my diagnostic list from my recent hospital stay, there were 8 different diseases, etc. listed. The top one said Severe Pulmonary Hypertension due to Connective Tissue Disease. Under that was End Stage Pulmonary Fibrosis. I would have thought it would say the hypertension was due to the fibrosis. Which it was. Any ideas, nursey?

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16

>> ,> You're right most doctors do call it pneumonitis but either word is correct. The definition of both words is an inflammatory illness of the lung. Most of us think of pneumonia as an infection that is treated with antibiotics. If I were guessing I'd say that's how our type of lung disease came to be referred to as pneumonitis, meaning an inflammatory illness of the lungs not involving an infection. > I find it so confusing trying to sort out the terminology! > Beth > Age 48 Fibrotic NSIP 06/06> > Change everything. Love and Forgive

brett bowser

brettvectordist (DOT) com

brett bowser

brett@...

brett bowser

brett@...

[Guest guest]

Peggy....how do you rate this big hug???? Like you said, "What am I, chopped liver?" hehee

Brett you know all we mama-hens have to have a hug too!

Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there!

All the terms and types of PF

MB,

Even with open lung biopsy and countless HRCTs and scans....my disease has been labeled just about every one of the terms. The very first thing it was called was Lupus Pneumonitis, which didn't sound so bad. I knew nothing about nothing. Each time I see a different pulmonologist or go through testing at another facility, the diagnosis comes back different. And yes, even Idiopathic. At the end of it all, which seems closer every day, a duck is still a duck. An ugly duckling!

Cynical, yeah. Smarter than ten years ago, yeah. Alive, yeah. Happy about that, yeah. Thankful, oh yeah. They can call it whatever they want. I know it is plain old Pulmonary Fibrosis secondary to numberous autoimune diseases or to medications like Methotrexate for those diseases.

When I got my diagnostic list from my recent hospital stay, there were 8 different diseases, etc. listed. The top one said Severe Pulmonary Hypertension due to Connective Tissue Disease. Under that was End Stage Pulmonary Fibrosis. I would have thought it would say the hypertension was due to the fibrosis. Which it was. Any ideas, nursey?

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16

>> ,> You're right most doctors do call it pneumonitis but either word is correct. The definition of both words is an inflammatory illness of the lung. Most of us think of pneumonia as an infection that is treated with antibiotics. If I were guessing I'd say that's how our type of lung disease came to be referred to as pneumonitis, meaning an inflammatory illness of the lungs not involving an infection. > I find it so confusing trying to sort out the terminology! > Beth > Age 48 Fibrotic NSIP 06/06> > Change everything. Love and Forgive

brett bowser

brettvectordist

brett bowser

brett@...

[Guest guest]

On a scale of 1 to 10    99. just the prettiest little thing.  Love and Prayers, PeggyIPF  2004,  Florida"Worry looks around, Sorry looks back,  Faith looks up." Peggy....how do you rate this big hug???? Like you said, "What am I, chopped liver?"  heheeBrett you know all we mama-hens have to have a hug too! Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! All the terms and types of PFMB,Even with open lung biopsy and countless HRCTs and scans....my disease has been labeled just about every one of the terms.  The very first thing it was called was Lupus Pneumonitis, which didn't sound so bad.  I knew nothing about nothing.  Each time I see a different pulmonologist or go through testing at another facility, the diagnosis comes back different.  And yes, even Idiopathic.  At the end of it all, which seems closer every day, a duck is still a duck.  An ugly duckling!Cynical, yeah.  Smarter than ten years ago, yeah.  Alive, yeah.  Happy about that, yeah.  Thankful, oh yeah.  They can call it whatever they want.  I know it is plain old Pulmonary Fibrosis secondary to numberous autoimune diseases or to medications like Methotrexate for those diseases. When I got my diagnostic list from my recent hospital stay, there were 8 different diseases, etc. listed.  The top one said Severe Pulmonary Hypertension due to Connective Tissue Disease.  Under that was End Stage Pulmonary Fibrosis.  I would have thought it would say the hypertension was due to the fibrosis.  Which it was.  Any ideas, nursey?Hugs, Joyce D.Pulmonary Fibrosis 1997    Bronchiectasis 2004    Pulmonary Hypertension 2008  Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc)  Rejected for Transplant 2006 .....I will not forget you.  Behold, I have engraved you on the palm of my hands.  Isaiah 49: 15-16  >> ,> You're right most doctors do call it pneumonitis but either word is correct. The definition of both words is an inflammatory illness of the lung. Most of us think of pneumonia as an infection that is treated with antibiotics. If I were guessing I'd say that's how our type of lung disease came to be referred to as pneumonitis, meaning an inflammatory illness of the lungs not involving an infection. > I find it so confusing trying to sort out the terminology! > Beth > Age 48 Fibrotic NSIP 06/06> > Change everything. Love and Forgivebrett bowserbrettvectordistbrett bowserbrettvectordist

[Guest guest]

Caro, this post is from way last week ---- but I just want to comment. Aren't grandkids "GREAT?" I still think we shouda had them first. K IllinoisCarolyn Wade wrote: Just brings joy to my heart looking at her!! I so miss when my kids were little! They are all grown now, but I have my grandbabies and they are my pride and joy!! Carobrett bowser

<brettvectordist> wrote: Thank you MBshe is my everythingwhen Im at work and having a bad day I can just glanceup at her picture and everything is not so bad> Brett,>> How can you stand it???? She is absolutely precious!!>>>> Beth> Age 48 Fibrotic NSIP 06/06>> Change everything. Love and Forgive>>>>> All the terms and types of PF>>>>>>>>> MB,>>>>>> Even with open lung biopsy and countless HRCTs and scans....my >>> disease has been labeled just about every one of the terms. The >>> very first thing it was called was Lupus Pneumonitis, which didn't >>> sound so bad. I

knew nothing about nothing. Each time I see a >>> different pulmonologist or go through testing at another facility, >>> the diagnosis comes back different. And yes, even Idiopathic. At >>> the end of it all, which seems closer every day, a duck is still a >>> duck. An ugly duckling!>>>>>> Cynical, yeah. Smarter than ten years ago, yeah. Alive, yeah. >>> Happy about that, yeah. Thankful, oh yeah. They can call it >>> whatever they want. I know it is plain old Pulmonary Fibrosis >>> secondary to numberous autoimune diseases or to medications like >>> Methotrexate for those diseases.>>>>>> When I got my diagnostic list from my recent hospital stay, there >>> were 8 different diseases, etc. listed. The top one said Severe >>> Pulmonary Hypertension due to Connective Tissue Disease. Under

>>> that was End Stage Pulmonary Fibrosis. I would have thought it >>> would say the hypertension was due to the fibrosis. Which it >>> was. Any ideas, nursey?>>>>>> Hugs, Joyce D.>>> Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary >>> Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, >>> Sjogren's, etc) Rejected for Transplant 2006>>> .....I will not forget you. Behold, I have engraved you on the >>> palm of my hands. Isaiah 49: 15-16>>>>>>>>>>>> >>> >>>> > ,>>> > You're right most doctors do call it pneumonitis but either word >>> is correct. The definition of both words is an inflammatory >>> illness of the

lung. Most of us think of pneumonia as an infection >>> that is treated with antibiotics. If I were guessing I'd say >>> that's how our type of lung disease came to be referred to as >>> pneumonitis, meaning an inflammatory illness of the lungs not >>> involving an infection.>>> > I find it so confusing trying to sort out the terminology!>>> > Beth>>> > Age 48 Fibrotic NSIP 06/06>>> >>>> > Change everything. Love and Forgive>>>>>>>>>>>>>>>>>>> brett bowser>> brettvectordist (DOT) com>>>>>>>>>>>>>> brett bowser> brettvectordist>>>>>brett

bowserbrettvectordistCaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi __________________________________________________

[Guest guest]

I totally agree!! I spoil mine rotten and I DON'T CARE!!!! HA!! I can send them back home!!CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi>>>>>> Joyce,>>>>>> Oh color me cynical, color me confused, color me frustrated but >>> most importantly color me STILL ALIVE!>>>>>>>>> As for what your chart said, I suppose you could say that your PH >>> is secondary to your connective tissue disease and that the >>> fibrosis is somewhere there in the middle. If you never had the >>> connective tissue disease you likely never would have had either >>> the fibrosis or the PH right? Who knows why they write what they

>>> write on our charts.>>>>>>>>> Wanna hear something funny? The first time I saw Dr. on at >>> Duke was last December. I got a copy of the dictated note in the >>> mail a couple of weeks later. In the examination part of the note, >>> Dr on stated, "Patient is pleasant, overweight woman with a >>> normal gait in spite of using a walker." I stopped >>> reading....HUH? A walker??? What on earth is he talking about. I >>> never used a walker in my life. The only thing I had with me that >>> day was my rolling backpack with two D tanks in it. I just tucked >>> that away till I went to see him again and I asked him about it. >>> He read it and proceeded to turn red to the roots of his hair. He >>> could not have been more mortified. He apologized profusely and

>>> actually admitted he was probably thinking of someone else while >>> he was dictating my note. I mean he had the medical facts right >>> cause he had my chart in front of him when he was dictating but >>> was describing my physical appearance from memory. We both had a >>> good laugh and moved on. He won't forget who I am anymore I'd >>> imagine.>>>>>>>>> I guess my point is they're human too, they make mistakes. They >>> use words we don't understand and sometimes write different things >>> on our charts than they tell us. Which is why it's so important to >>> do what you always say, remember we're going to battle against >>> this disease, we're fighting for our lives and we have to look out >>> for ourselves. We can't afford to treat the doctors like gods,

>>> they're human just like us. We MUST ask questions over and over >>> until we understand and research on our own, seek out support if >>> we want to LIVE!>>>>>>>>>>>> Beth>>> Age 48 Fibrotic NSIP 06/06>>>>>> Change everything. Love and Forgive>>>>>>>>>>>>>>> All the terms and types of PF>>>>>>>>> MB,>>>>>> Even with open lung biopsy and countless HRCTs and scans....my >>> disease has been labeled just about every one of the terms. The >>> very first thing it

was called was Lupus Pneumonitis, which didn't >>> sound so bad. I knew nothing about nothing. Each time I see a >>> different pulmonologist or go through testing at another facility, >>> the diagnosis comes back different. And yes, even Idiopathic. At >>> the end of it all, which seems closer every day, a duck is still a >>> duck. An ugly duckling!>>>>>> Cynical, yeah. Smarter than ten years ago, yeah. Alive, yeah. >>> Happy about that, yeah. Thankful, oh yeah. They can call it >>> whatever they want. I know it is plain old Pulmonary Fibrosis >>> secondary to numberous autoimune diseases or to medications like >>> Methotrexate for those diseases.>>>>>> When I got my diagnostic list from my recent hospital stay, there >>> were 8 different diseases, etc. listed. The top one

said Severe >>> Pulmonary Hypertension due to Connective Tissue Disease. Under >>> that was End Stage Pulmonary Fibrosis. I would have thought it >>> would say the hypertension was due to the fibrosis. Which it >>> was. Any ideas, nursey?>>>>>> Hugs, Joyce D.>>> Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary >>> Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, >>> Sjogren's, etc) Rejected for Transplant 2006>>> .....I will not forget you. Behold, I have engraved you on the >>> palm of my hands. Isaiah 49: 15-16>>>>>>>>>>>> >>> >>>> > ,>>> > You're right most doctors do call it pneumonitis but either word

>>> is correct. The definition of both words is an inflammatory >>> illness of the lung. Most of us think of pneumonia as an infection >>> that is treated with antibiotics. If I were guessing I'd say >>> that's how our type of lung disease came to be referred to as >>> pneumonitis, meaning an inflammatory illness of the lungs not >>> involving an infection.>>> > I find it so confusing trying to sort out the terminology!>>> > Beth>>> > Age 48 Fibrotic NSIP 06/06>>> >>>> > Change everything. Love and Forgive>>>>>>>>>>>>>>>>>>> brett bowser>> brettvectordist (DOT) com>>>>>>>>>>>>>> brett bowser> brettvectordist (DOT)

com>>>>>brett bowserbrettvectordist (DOT) comCaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi ____________ _________ _________ _________ _________ __