Guest guest Posted January 11, 2010 Report Share Posted January 11, 2010 IPF is UIP of unknown cause so stating IPF/UIP or UIP/IPF simply means that the pathology of the disease is Usual Interstitial Pneumonitis and that clinically no cause has been determined so it remains idiopathic. PF/UIP would also be correct meaning its a form of pulmonary fibrosis that has the pathology of UIP. > > If IPF means unknown cause, why do so many in this group state their diagnosis as IPF / UIP? Shouldn't the diagnosis be PF / UIP? > > C_53_Familial IPF_5/09, Washington > HOPE doesn't disappoint! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2010 Report Share Posted January 11, 2010 , Because UIP is said to be the most common ILD with an unknown cause it is often referred to as IPF/UIP. That reference is not just among people on this forum but most places you look for information about these diseases. Typically a cause for UIP is not usually known so the term UIP is often used interchangeably with IPF. Here is some information from a website that deals with occupational hazards and the diseases caused by them: "What Is Idiopathic Pulmonary Fibrosis (IPF)? "IPF is a specific form of chronic fibrosing interstitial pneumonia, limited to the lung, and associated with the histologic appearance of UIP [usual Interstitial Pneumonia] on surgical (thoracoscopic or open) lung biopsy. The aetiology is unknown. The definite diagnosis of IPF in the presence of a surgical biopsy showing UIP includes the following. 1. Exclusion of other known causes of interstitial lung disease such as drug toxicities, environmental exposures, and collagen vascular diseases. 2. Abnormal pulmonary function studies that include evidence of restriction and/or impaired gas exchange. 3. Abnormalities on conventional chest radiographs or high-resolution computed tomography (HRCT). . . . All IPF is UIP, but on the other hand, not all UIP is IPF." 1 IPF, as it was defined in the past, is the most common nonoccupational cause of interstitial lung disease--about 25% to 40% of the cases. [Harber, p. 216]" Here is a link to the full article: http://www.haz-map.com/ipf.htm Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breath Support <Breathe-Support >Sent: Mon, January 11, 2010 10:08:09 PMSubject: IPF / UIP? If IPF means unknown cause, why do so many in this group state their diagnosis as IPF / UIP? Shouldn't the diagnosis be PF / UIP? C_53_Familial IPF_5/09, Washington HOPE doesn't disappoint! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2010 Report Share Posted January 11, 2010 , Because UIP is said to be the most common ILD with an unknown cause it is often referred to as IPF/UIP. That reference is not just among people on this forum but most places you look for information about these diseases. Typically a cause for UIP is not usually known so the term UIP is often used interchangeably with IPF. Here is some information from a website that deals with occupational hazards and the diseases caused by them: "What Is Idiopathic Pulmonary Fibrosis (IPF)? "IPF is a specific form of chronic fibrosing interstitial pneumonia, limited to the lung, and associated with the histologic appearance of UIP [usual Interstitial Pneumonia] on surgical (thoracoscopic or open) lung biopsy. The aetiology is unknown. The definite diagnosis of IPF in the presence of a surgical biopsy showing UIP includes the following. 1. Exclusion of other known causes of interstitial lung disease such as drug toxicities, environmental exposures, and collagen vascular diseases. 2. Abnormal pulmonary function studies that include evidence of restriction and/or impaired gas exchange. 3. Abnormalities on conventional chest radiographs or high-resolution computed tomography (HRCT). . . . All IPF is UIP, but on the other hand, not all UIP is IPF." 1 IPF, as it was defined in the past, is the most common nonoccupational cause of interstitial lung disease--about 25% to 40% of the cases. [Harber, p. 216]" Here is a link to the full article: http://www.haz-map.com/ipf.htm Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breath Support <Breathe-Support >Sent: Mon, January 11, 2010 10:08:09 PMSubject: IPF / UIP? If IPF means unknown cause, why do so many in this group state their diagnosis as IPF / UIP? Shouldn't the diagnosis be PF / UIP? C_53_Familial IPF_5/09, Washington HOPE doesn't disappoint! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2010 Report Share Posted January 11, 2010 Ok, so that means those with IPF / UIP probably had a lung biopsy to diagnose the UIP? C_53_Familial IPF_5/09, Washington HOPE doesn't disappoint! To: Breathe-Support Sent: Mon, January 11, 2010 7:21:33 PMSubject: Re: IPF / UIP? , Because UIP is said to be the most common ILD with an unknown cause it is often referred to as IPF/UIP. That reference is not just among people on this forum but most places you look for information about these diseases. Typically a cause for UIP is not usually known so the term UIP is often used interchangeably with IPF. Here is some information from a website that deals with occupational hazards and the diseases caused by them: "What Is Idiopathic Pulmonary Fibrosis (IPF)? "IPF is a specific form of chronic fibrosing interstitial pneumonia, limited to the lung, and associated with the histologic appearance of UIP [usual Interstitial Pneumonia] on surgical (thoracoscopic or open) lung biopsy. The aetiology is unknown. The definite diagnosis of IPF in the presence of a surgical biopsy showing UIP includes the following. 1. Exclusion of other known causes of interstitial lung disease such as drug toxicities, environmental exposures, and collagen vascular diseases. 2. Abnormal pulmonary function studies that include evidence of restriction and/or impaired gas exchange. 3. Abnormalities on conventional chest radiographs or high-resolution computed tomography (HRCT). . . . All IPF is UIP, but on the other hand, not all UIP is IPF." 1 IPF, as it was defined in the past, is the most common nonoccupational cause of interstitial lung disease--about 25% to 40% of the cases. [Harber, p. 216]" Here is a link to the full article: http://www.haz- map.com/ipf. htm Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: worth <hope2thend (AT) yahoo (DOT) com>To: Breath Support <Breathe-Support@ yahoogroups. com>Sent: Mon, January 11, 2010 10:08:09 PMSubject: IPF / UIP? If IPF means unknown cause, why do so many in this group state their diagnosis as IPF / UIP? Shouldn't the diagnosis be PF / UIP? C_53_Familial IPF_5/09, Washington HOPE doesn't disappoint! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2010 Report Share Posted January 11, 2010 No, it could have been determined from a CT, even though the accuracy of that determination wouldn't be as high as with a biopsy. I think one point needs to be made too. Just because someone has put something here beside their name doesn't mean thats definitive. Many doctors throughout the country are using the terms casually and are generalizing. Many patients also don't understand or care about the specifics. We aren't running signatures by a medical board of Interstitial Lung Disease expert doctors. They're simply people putting the terms based on their knowledge or beliefs. > > Ok, so that means those with IPF / UIP probably had a lung biopsy to diagnose the UIP?  >  > C_53_Familial IPF_5/09, Washington > HOPE doesn't disappoint! > > > > > > ________________________________ > From: Beth mbmurtha@... > To: Breathe-Support > Sent: Mon, January 11, 2010 7:21:33 PM > Subject: Re: IPF / UIP? > >  > , > Because UIP is said to be the most common ILD with an unknown cause it is often referred to as IPF/UIP. That reference is not just among people on this forum but most places you look for information about these diseases. Typically a cause for UIP is not usually known so the term UIP is often used interchangeably with IPF. > > Here is some information from a website that deals with occupational hazards and the diseases caused by them: > > " What Is Idiopathic Pulmonary Fibrosis (IPF)? > " IPF is a specific form of chronic fibrosing interstitial pneumonia,limited to the lung, and associated with the histologic appearanceof UIP [usual Interstitial Pneumonia] on surgical (thoracoscopic or open) lung biopsy. Theaetiology is unknown. The definite diagnosis of IPF in the presenceof a surgical biopsy showing UIP includes the following. 1.Exclusion of other known causes of interstitial lung diseasesuch as drug toxicities, environmental exposures, and collagenvascular diseases. 2. Abnormal pulmonary function studies thatinclude evidence of restriction and/or impaired gas exchange.3. Abnormalities on conventional chest radiographs or high-resolutioncomputed tomography (HRCT). . . . All IPF is UIP, but on the other hand, not all UIP is IPF. " 1 IPF, as it was defined in the past, is the most common nonoccupational cause of interstitial lung disease--about 25% to 40% of the cases. [Harber, p. 216] " >  > Here is a link to the full article: > http://www.haz- map.com/ipf. htm >  > Beth > Moderator > Fibrotic NSIP 06/06 Dermatomyositis 11/08 >  >  > > > > > ________________________________ > From: worth hope2thend (AT) yahoo (DOT) com> > To: Breath Support <Breathe-Support@ yahoogroups. com> > Sent: Mon, January 11, 2010 10:08:09 PM > Subject: IPF / UIP? > >  > If IPF means unknown cause, why do so many in this group state their diagnosis as IPF / UIP? Shouldn't the diagnosis be PF / UIP? >  > C_53_Familial IPF_5/09, Washington > HOPE doesn't disappoint! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2010 Report Share Posted January 11, 2010 , No, I didn't have a biopsy ( well, I had the bronchoscope) and have IPF/UIP. I was diagnosed from HRCT, X-rays and PFT's. there was a lot of ground glass and whatever they look for.I have always said PF is PF is PF for the bottom line. Can't waist what little brain power I have left worrying about it. It is what it is.. Love & PrayersPeggy, IPF 2004 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2010 Report Share Posted January 11, 2010 Peggy, Bruce & beth, I didn't know it could be diagnosed from a CT. Just me, wanting to understand something that was puzzling to me. C_53_Familial IPF_5/09, Washington HOPE doesn't disappoint! To: Breathe-Support Sent: Mon, January 11, 2010 7:47:45 PMSubject: Re: IPF / UIP? , No, I didn't have a biopsy ( well, I had the bronchoscope) and have IPF/UIP. I was diagnosed from HRCT, X-rays and PFT's. there was a lot of ground glass and whatever they look for. I have always said PF is PF is PF for the bottom line. Can't waist what little brain power I have left worrying about it.. It is what it is.. Love & Prayers Peggy, IPF 2004 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2010 Report Share Posted January 11, 2010 Interstitial Lung Disease can be diagnosed as an overall group of diseases very well from an HRCT (over 95%). The specific form can only be diagnosed on average at an accuracy of about 60%. However, in some cases the indications are strong enough to increase that accuracy and it would tend to increase as the disease advances. Now the accuracy as to the specific form of ILD is around 96% when diagnosing from a biopsy. But that is all based on current knowledge and estimates. A year or two or five from now there will have been new forms of ILD's identified and separated and probably more tools such as additional blood tests developed. We still know so little about the diseases just as we know so little about connective tissue diseases and their causes. > > Peggy, Bruce & beth, > > I didn't know it could be diagnosed from a CT. > > Just me, wanting to understand something that was puzzling to me. >  > C_53_Familial IPF_5/09, Washington > HOPE doesn't disappoint! > > > > > > ________________________________ > From: Peggy pac1773@... > To: Breathe-Support > Sent: Mon, January 11, 2010 7:47:45 PM > Subject: Re: IPF / UIP? > >  > , No, I didn't have a biopsy ( well, I had the bronchoscope) and have IPF/UIP. I was diagnosed from HRCT, X-rays and PFT's.  there was a lot of ground glass and whatever they look for. > I have always said PF is PF is PF for the bottom line. Can't waist what little brain power I have left worrying about it. It is what it is.. > > > > > Love & Prayers > Peggy, IPF 2004 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2010 Report Share Posted January 12, 2010 I too am confused because I had HRCT but still had to have a biopsy. I wonder why..To: Breathe-Support Sent: Mon, January 11, 2010 10:58:55 PMSubject: Re: IPF / UIP? Peggy, Bruce & beth, I didn't know it could be diagnosed from a CT. Just me, wanting to understand something that was puzzling to me.. C_53_Familial IPF_5/09, Washington HOPE doesn't disappoint! From: Peggy <pac1773@centurylink .net>To: Breathe-Support@ yahoogroups. comSent: Mon, January 11, 2010 7:47:45 PMSubject: Re: IPF / UIP? , No, I didn't have a biopsy ( well, I had the bronchoscope) and have IPF/UIP. I was diagnosed from HRCT, X-rays and PFT's. there was a lot of ground glass and whatever they look for. I have always said PF is PF is PF for the bottom line. Can't waist what little brain power I have left worrying about it.. It is what it is.. Love & Prayers Peggy, IPF 2004 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2010 Report Share Posted January 12, 2010 Because an HRCT is only approximately 60% accurate in determining what form of Interstitial Lung Disease and a biopsy is 96% accurate in that regard. > > I too am confused because I had HRCT but still had to have a biopsy. I wonder why.. > > > > > > ________________________________ > From: worth hope2thend@... > To: Breathe-Support > Sent: Mon, January 11, 2010 10:58:55 PM > Subject: Re: IPF / UIP? > > > Peggy, Bruce & beth, > > I didn't know it could be diagnosed from a CT. > > Just me, wanting to understand something that was puzzling to me. > > C_53_Familial IPF_5/09, Washington > HOPE doesn't disappoint! > > > > > > ________________________________ > From: Peggy pac1773@centurylink .net> > To: Breathe-Support@ yahoogroups. com > Sent: Mon, January 11, 2010 7:47:45 PM > Subject: Re: IPF / UIP? > > > , No, I didn't have a biopsy ( well, I had the bronchoscope) and have IPF/UIP. I was diagnosed from HRCT, X-rays and PFT's. there was a lot of ground glass and whatever they look for. > I have always said PF is PF is PF for the bottom line. Can't waist what little brain power I have left worrying about it.. It is what it is.. > > > > > Love & Prayers > Peggy, IPF 2004 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2010 Report Share Posted January 12, 2010 , Most of us at first didn't know what questions to ask. My daughter was with me and ask "how will that change her treatment plan" answer: It WON'T.A proven diagnosis of IPF has no treatment. period. Prednisone helps some. with other connective tissue diseases. But not me. So everyone should ask their Dr. a lot of questions before having such an invasive procedure, It is very invasive. Vats included. Anytime a hole is made in your body and a piece of you removed it's invasive andyou are open for infections.. Love & PrayersPeggy, IPF 2004 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2010 Report Share Posted January 12, 2010 the biopsy doesn't always help either. They get such small snippets it is sometimes for nothing. Bruce, I don't think the biopsies are all that accurate. To many do not get a diagnosis from it at all. Some do. but not worth the risk if you have a good diagnosis. Love & PrayersPeggy, IPF 2004 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2010 Report Share Posted January 12, 2010 the first pulmonary at Penn said that even with a biopsy, you don't always get an accurate diagnosis Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Re: IPF / UIP?To: Breathe-Support Date: Tuesday, January 12, 2010, 11:41 AM the biopsy doesn't always help either. They get such small snippets it is sometimes for nothing. Bruce, I don't think the biopsies are all that accurate. To many do not get a diagnosis from it at all. Some do. but not worth the risk if you have a good diagnosis. Love & Prayers Peggy, IPF 2004 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2010 Report Share Posted January 12, 2010 Peggy, as I mentioned in other posts I would never go through this procedure again. Since the biopsy I have had 3 chest tubes because of complications from the biopsy. Before the biopsy I thought I was pretty healthy now I know differently.:(To: Breathe-Support Sent: Tue, January 12, 2010 11:38:00 AMSubject: Re: IPF / UIP? , Most of us at first didn't know what questions to ask. My daughter was with me and ask "how will that change her treatment plan" answer: It WON'T.A proven diagnosis of IPF has no treatment. period. Prednisone helps some. with other connective tissue diseases. But not me. So everyone should ask their Dr. a lot of questions before having such an invasive procedure, It is very invasive. Vats included. Anytime a hole is made in your body and a piece of you removed it's invasive andyou are open for infections.. Love & PrayersPeggy, IPF 2004 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2010 Report Share Posted January 12, 2010 Peggy/Pink The experts in the field say the biopsies are 96% accurate based on three samples. The accuracy was less when they were taking only one slice. Still, they're not by any means perfect. Peggy. I asked the treatment question and thats what guided my choice to get a biopsy. My treatment has been based on its results and continued tests to date. If more information is found or the findings change, then my treatment will change. > > the biopsy doesn't always help either. They get such small snippets it is sometimes for nothing. > > Bruce, I don't think the biopsies are all that accurate. To many do not get a diagnosis from it at all. Some do. but not worth the risk if you have > a good diagnosis. > > > Love & Prayers > Peggy, IPF 2004 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2010 Report Share Posted January 12, 2010 Peggy... I'm with you. Hence I chose no VATS! I don't regret my decision. I'm nearly 4 years since dx and doing fairly well. A VATS could have changed everything but my decision was good for ME. I go back to Dr. Raghu the end of this month.... MamaSher; IPF 2006; Cellular NSIP, PH, 2009, OR,.Don't fret about tomorrow, God is already there! From: Peggy Sent: Tuesday, January 12, 2010 8:38 AM To: Breathe-Support Subject: Re: IPF / UIP? , Most of us at first didn't know what questions to ask. My daughter was with me and ask "how will that change her treatment plan" answer: It WON'T. A proven diagnosis of IPF has no treatment. period. Prednisone helps some. with other connective tissue diseases. But not me. So everyone should ask their Dr. a lot of questions before having such an invasive procedure, It is very invasive. Vats included. Anytime a hole is made in your body and a piece of you removed it's invasive and you are open for infections.. Love & Prayers Peggy, IPF 2004 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.725 / Virus Database: 270.14.137/2617 - Release Date: 01/12/10 11:35:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2010 Report Share Posted January 12, 2010 Sher Thats the important thing is to do what is right for you. It's always your choice. The fact they've diagnosed Cellular NSIP without a biopsy and the time you've had it makes it seem like a fairly certain diagnosis. While I still think you're young, I think age does play a role and if I had been your age, doubt I would have had one. Certainly if I'd already had the Cellular NSIP diagnosis I wouldn't have. > > Peggy... I'm with you. Hence I chose no VATS! I don't regret my decision. I'm nearly 4 years since dx and doing fairly well. A VATS could have changed everything but my decision was good for ME. > I go back to Dr. Raghu the end of this month.... > > MamaSher; IPF 2006; Cellular NSIP, PH, 2009, OR,. > Don't fret about tomorrow, God is already there! > > > > From: Peggy > Sent: Tuesday, January 12, 2010 8:38 AM > To: Breathe-Support > Subject: Re: IPF / UIP? > > > > , Most of us at first didn't know what questions to ask. My daughter was with me and ask " how will that change her treatment plan " answer: It WON'T. > > A proven diagnosis of IPF has no treatment. period. Prednisone helps some. with other connective tissue diseases. But not me. So everyone should ask their Dr. a lot of questions before having such an invasive procedure, It is very invasive. Vats included. Anytime a hole is made in your body and a piece of you removed it's invasive and > you are open for infections.. > > > > Love & Prayers > Peggy, IPF 2004 > > > > > > > > > > > > > > > > > > ------------------------------------------------------------------------\ -------- > > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 9.0.725 / Virus Database: 270.14.137/2617 - Release Date: 01/12/10 11:35:00 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2010 Report Share Posted January 12, 2010 Dr. Raghu told me 71 isn't old. NICE. I like that.Beverley Joy,71,PF, Chronic HP, birds and mold 1-09,Sjogren's,Fibromyalgia IdahoSubject: Re: IPF / UIP?To: Breathe-Support Date: Tuesday, January 12, 2010, 2:00 PM Sher Thats the important thing is to do what is right for you. It's always your choice. The fact they've diagnosed Cellular NSIP without a biopsy and the time you've had it makes it seem like a fairly certain diagnosis. While I still think you're young, I think age does play a role and if I had been your age, doubt I would have had one. Certainly if I'd already had the Cellular NSIP diagnosis I wouldn't have. > > Peggy... I'm with you. Hence I chose no VATS! I don't regret my decision. I'm nearly 4 years since dx and doing fairly well. A VATS could have changed everything but my decision was good for ME. > I go back to Dr. Raghu the end of this month.... > > MamaSher; IPF 2006; Cellular NSIP, PH, 2009, OR,. > Don't fret about tomorrow, God is already there! > > > > From: Peggy > Sent: Tuesday, January 12, 2010 8:38 AM > To: Breathe-Support@ yahoogroups. com > Subject: Re: IPF / UIP? > > > > , Most of us at first didn't know what questions to ask. My daughter was with me and ask "how will that change her treatment plan" answer: It WON'T. > > A proven diagnosis of IPF has no treatment. period. Prednisone helps some. with other connective tissue diseases. But not me. So everyone should ask their Dr. a lot of questions before having such an invasive procedure, It is very invasive. Vats included. Anytime a hole is made in your body and a piece of you removed it's invasive and > you are open for infections.. > > > > Love & Prayers > Peggy, IPF 2004 > > > > > > > > > > > > > > > > > > ------------ --------- --------- --------- --------- --------- -\ -------- > > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 9.0.725 / Virus Database: 270.14.137/2617 - Release Date: 01/12/10 11:35:00 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2010 Report Share Posted January 12, 2010 Thanks Bruce...good to know! C_53_Familial IPF_5/09, Washington HOPE doesn't disappoint! To: Breathe-Support Sent: Mon, January 11, 2010 8:06:47 PMSubject: Re: IPF / UIP? Interstitial Lung Disease can be diagnosed as an overall group ofdiseases very well from an HRCT (over 95%). The specific form can onlybe diagnosed on average at an accuracy of about 60%. However, in somecases the indications are strong enough to increase that accuracy and itwould tend to increase as the disease advances. Now the accuracy as tothe specific form of ILD is around 96% when diagnosing from a biopsy.But that is all based on current knowledge and estimates. A year or twoor five from now there will have been new forms of ILD's identified andseparated and probably more tools such as additional blood testsdeveloped. We still know so little about the diseases just as we know solittle about connective tissue diseases and their causes.>> Peggy, Bruce & beth,>> I didn't know it could be diagnosed from a CT.Â>> Just me, wanting to understand something that was puzzling to me.> Â> C_53_Familial IPF_5/09, Washington> HOPE doesn't disappoint!>>>>>> ____________ _________ _________ __> To: Breathe-Support@ yahoogroups. com> Sent: Mon, January 11, 2010 7:47:45 PM> Subject: Re: IPF / UIP?>> Â> , No, I didn't have a biopsy ( well, I had the bronchoscope) andhave IPF/UIP. I was diagnosed from HRCT, X-rays and PFT's.  therewas a lot of ground glass and whatever they look for.> I have always said PF is PF is PF for the bottom line. Can't waistwhat little brain power I have left worrying about it. It is what itis..Â>>>>> Love & Prayers> Peggy, IPF 2004> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2010 Report Share Posted January 12, 2010 , What is your diagnosis? C_53_Familial IPF_5/09, Washington HOPE doesn't disappoint! To: Breathe-Support Sent: Tue, January 12, 2010 8:21:20 AMSubject: Re: IPF / UIP? I too am confused because I had HRCT but still had to have a biopsy. I wonder why.. From: worth <hope2thend (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Mon, January 11, 2010 10:58:55 PMSubject: Re: IPF / UIP? Peggy, Bruce & beth, I didn't know it could be diagnosed from a CT. Just me, wanting to understand something that was puzzling to me.. C_53_Familial IPF_5/09, Washington HOPE doesn't disappoint! From: Peggy <pac1773@centurylink .net>To: Breathe-Support@ yahoogroups. comSent: Mon, January 11, 2010 7:47:45 PMSubject: Re: IPF / UIP? , No, I didn't have a biopsy ( well, I had the bronchoscope) and have IPF/UIP. I was diagnosed from HRCT, X-rays and PFT's. there was a lot of ground glass and whatever they look for. I have always said PF is PF is PF for the bottom line. Can't waist what little brain power I have left worrying about it.. It is what it is.. Love & Prayers Peggy, IPF 2004 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2010 Report Share Posted January 12, 2010 Sher & Bruce, From what I've learned from Dr. Raghu age (70 is not old!) is not so much a factor of risk of biopsy as is the severity or stage of our disease, like low PFT scores and other health conditions we might have at the time. I'm glad they didn't even ask me to have the biopsy. Probably because my brother had IPF. C_53_Familial IPF_5/09, Washington HOPE doesn't disappoint! To: Breathe-Support Sent: Tue, January 12, 2010 2:00:44 PMSubject: Re: IPF / UIP? SherThats the important thing is to do what is right for you. It's alwaysyour choice. The fact they've diagnosed Cellular NSIP without a biopsyand the time you've had it makes it seem like a fairly certaindiagnosis. While I still think you're young, I think age does play arole and if I had been your age, doubt I would have had one. Certainlyif I'd already had the Cellular NSIP diagnosis I wouldn't have.>> Peggy... I'm with you. Hence I chose no VATS! I don't regret mydecision. I'm nearly 4 years since dx and doing fairly well. A VATScould have changed everything but my decision was good for ME.> I go back to Dr. Raghu the end of this month....>> MamaSher; IPF 2006; Cellular NSIP, PH, 2009, OR,.> Don't fret about tomorrow, God is already there!>>>> From: Peggy > Sent: Tuesday, January 12, 2010 8:38 AM> To: Breathe-Support@ yahoogroups. com> Subject: Re: IPF / UIP?>>>> , Most of us at first didn't know what questions to ask. Mydaughter was with me and ask "how will that change her treatment plan"answer: It WON'T.>> A proven diagnosis of IPF has no treatment. period. Prednisone helpssome. with other connective tissue diseases. But not me. So everyoneshould ask their Dr. a lot of questions before having such an invasiveprocedure, It is very invasive. Vats included. Anytime a hole is made inyour body and a piece of you removed it's invasive and> you are open for infections..>>>> Love & Prayers> Peggy, IPF 2004>>>>>>>>>>>>>>>>>>------------ --------- --------- --------- --------- --------- -\-------->>>> No virus found in this incoming message.> Checked by AVG - www.avg.com> Version: 9..0.725 / Virus Database: 270.14.137/2617 - Release Date:01/12/10 11:35:00> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2010 Report Share Posted January 12, 2010 I do believe age is a factor in making the choice. I didn't say necessarily a prevailing factor in the risk. It's just an overall factor in the choice to me. The older I get the less inclined I am to have any invasive procedure. There are many other things that are possible as issues simply as we age. In addition, there is the mathematics of risk/benefit. At 70 with probable cellular NSIP for instance, the odds that it will not be the condition I die from is far greater than at 40. The reason is that at 70 other conditions become more likely and cellular NSIP has a rather long average life expectancy compared to other ILD's. As to risk of the biopsy, obviously physical condition is the key. However, even there, most of us have more other conditions as we age than we did earlier. Ultimately, though, it all falls into a personal informed choice. I do not believe most doctors give adequate information on which to make that choice, however (especially outside teaching hospitals). They quite often either say, falsely, there is nothing to be gained or go to the other extreme of stating it is a necessity. They often make it sound like a horrid procedure or make it sound like a walk in the park. It's often based on their limited exposure. Most have not been involved in large numbers of VATS. That's why prior to my decision, I found this site so helpful. Before I met with my surgeon, I knew enough to ask questions and knew it wasn't as easy as either the pulmonologist or the surgeon made it sound. Had I not had that information, I would have been angry afterwards for having not been adequately advised. So, I'd say my doctors didn't adequately advise me, but this forum did. > > > > Peggy... I'm with you. Hence I chose no VATS! I don't regret my > decision. I'm nearly 4 years since dx and doing fairly well. A VATS > could have changed everything but my decision was good for ME. > > I go back to Dr. Raghu the end of this month.... > > > > MamaSher; IPF 2006; Cellular NSIP, PH, 2009, OR,. > > Don't fret about tomorrow, God is already there! > > > > > > > > From: Peggy > > Sent: Tuesday, January 12, 2010 8:38 AM > > To: Breathe-Support@ yahoogroups. com > > Subject: Re: IPF / UIP? > > > > > > > > , Most of us at first didn't know what questions to ask. My > daughter was with me and ask " how will that change her treatment plan " > answer: It WON'T. > > > > A proven diagnosis of IPF has no treatment. period. Prednisone helps > some. with other connective tissue diseases. But not me. So everyone > should ask their Dr. a lot of questions before having such an invasive > procedure, It is very invasive. Vats included. Anytime a hole is made in > your body and a piece of you removed it's invasive and > > you are open for infections.. > > > > > > > > Love & Prayers > > Peggy, IPF 2004 > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ------------ --------- --------- --------- --------- --------- -\ > -------- > > > > > > > > No virus found in this incoming message. > > Checked by AVG - www.avg.com > > Version: 9.0.725 / Virus Database: 270.14.137/2617 - Release Date: > 01/12/10 11:35:00 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2010 Report Share Posted January 13, 2010 Hi ,My dx is IPF/UIP. I was dx in 11/09. I am going to NYC in Feb to see about a lung transplant and hopes that they will look at the biopsy again. To: Breathe-Support Sent: Tue, January 12, 2010 8:31:39 PMSubject: Re: IPF / UIP? , What is your diagnosis? C_53_Familial IPF_5/09, Washington HOPE doesn't disappoint! From: Terry Oettinger <iltopaint (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Tue, January 12, 2010 8:21:20 AMSubject: Re: IPF / UIP? I too am confused because I had HRCT but still had to have a biopsy. I wonder why.. From: worth <hope2thend (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Mon, January 11, 2010 10:58:55 PMSubject: Re: IPF / UIP? Peggy, Bruce & beth, I didn't know it could be diagnosed from a CT. Just me, wanting to understand something that was puzzling to me.. C_53_Familial IPF_5/09, Washington HOPE doesn't disappoint! From: Peggy <pac1773@centurylink .net>To: Breathe-Support@ yahoogroups. comSent: Mon, January 11, 2010 7:47:45 PMSubject: Re: IPF / UIP? , No, I didn't have a biopsy ( well, I had the bronchoscope) and have IPF/UIP. I was diagnosed from HRCT, X-rays and PFT's. there was a lot of ground glass and whatever they look for. I have always said PF is PF is PF for the bottom line. Can't waist what little brain power I have left worrying about it.. It is what it is.. Love & Prayers Peggy, IPF 2004 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2010 Report Share Posted January 13, 2010 Sher, we agree Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: IPF / UIP?To: Breathe-Support Date: Tuesday, January 12, 2010, 4:42 PM Peggy... I'm with you. Hence I chose no VATS! I don't regret my decision. I'm nearly 4 years since dx and doing fairly well. A VATS could have changed everything but my decision was good for ME. I go back to Dr. Raghu the end of this month.... MamaSher; IPF 2006; Cellular NSIP, PH, 2009, OR,.Don't fret about tomorrow, God is already there! From: Peggy Sent: Tuesday, January 12, 2010 8:38 AM To: Breathe-Support@ yahoogroups. com Subject: Re: IPF / UIP? , Most of us at first didn't know what questions to ask. My daughter was with me and ask "how will that change her treatment plan" answer: It WON'T. A proven diagnosis of IPF has no treatment. period. Prednisone helps some. with other connective tissue diseases. But not me. So everyone should ask their Dr. a lot of questions before having such an invasive procedure, It is very invasive. Vats included. Anytime a hole is made in your body and a piece of you removed it's invasive and you are open for infections.. Love & Prayers Peggy, IPF 2004 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.725 / Virus Database: 270.14.137/2617 - Release Date: 01/12/10 11:35:00 Quote Link to comment Share on other sites More sharing options...
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