Guest guest Posted May 10, 2009 Report Share Posted May 10, 2009 Hi Margaret...just a quick welcome here and to let you know you are in the best place you can be as we share this disease. You say you've been on O2 since Feb and dx (diagnosed) three weeks before. I think this is the first time I've heard it in this order...usually the dx is first and O2 follows along behind somewhere... I was dx Mar.2006 and have remained fairly stable since, a couple of dips in progression but I'm hanging in there. We'll get more acquainted as we go along. Again, welcome. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! new I'm new to the breathe-support group. Just recently diagnosed with Pulmonary Fibrosis. I am currently seeking a second opinion and am concerned about the open lung biopsy that has been recommended. Has any one been through this procedure? Was the information gained worth the risk? What information do you learn from the biopsy? By the way I am a working Grandmother, raising one wonderful grandson. On o2 since February. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2009 Report Share Posted May 10, 2009 Hi Margaret...just a quick welcome here and to let you know you are in the best place you can be as we share this disease. You say you've been on O2 since Feb and dx (diagnosed) three weeks before. I think this is the first time I've heard it in this order...usually the dx is first and O2 follows along behind somewhere... I was dx Mar.2006 and have remained fairly stable since, a couple of dips in progression but I'm hanging in there. We'll get more acquainted as we go along. Again, welcome. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! new I'm new to the breathe-support group. Just recently diagnosed with Pulmonary Fibrosis. I am currently seeking a second opinion and am concerned about the open lung biopsy that has been recommended. Has any one been through this procedure? Was the information gained worth the risk? What information do you learn from the biopsy? By the way I am a working Grandmother, raising one wonderful grandson. On o2 since February. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2009 Report Share Posted May 10, 2009 Hi Margaret...just a quick welcome here and to let you know you are in the best place you can be as we share this disease. You say you've been on O2 since Feb and dx (diagnosed) three weeks before. I think this is the first time I've heard it in this order...usually the dx is first and O2 follows along behind somewhere... I was dx Mar.2006 and have remained fairly stable since, a couple of dips in progression but I'm hanging in there. We'll get more acquainted as we go along. Again, welcome. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! new I'm new to the breathe-support group. Just recently diagnosed with Pulmonary Fibrosis. I am currently seeking a second opinion and am concerned about the open lung biopsy that has been recommended. Has any one been through this procedure? Was the information gained worth the risk? What information do you learn from the biopsy? By the way I am a working Grandmother, raising one wonderful grandson. On o2 since February. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2009 Report Share Posted May 10, 2009 Margaret I don't know where this second pulmonologist is, but if he's local to Chandler, AZ, I would doubt seriously him having experience with PF. Just a warning. I would want an opinion from a center specializing in these diseases. The majority of doctors just lack the experience with it, through no fault of their own, but because of not seeing it regularly. > > > From: Beth mbmurtha@... > Subject: Re: new > To: Breathe-Support > Date: Sunday, May 10, 2009, 2:36 PM > > > > > > > > > > > > > > Margaret, > Welcome to Breathe Support! We always welcome people with somewhat mixed feelings. Happy you found us but sad that you had reason to look for a group like this. I hope that you will find what you are looking for here in addition to some things you might not expect, things like understanding and friendship. > I was diagnosed with pulmonary fibrosis 3 years ago this month. I was 46 when I was diagnosed. Thank God I've been stable since my diagnosis. I've been on oxygen 24/7 since that time. > Like you are considering I had an open lung biopsy. Initially the intention was to do a VATS (video assisted thoracic surgery) which is somewhat less invasive. However I reacted badly to the anesthesia and the VATS was abandoned and the faster though more invasive open lung biopsy was done. I was on a ventilator for two days post op and had a chest tube for a couple of days after that. I was discharged from the hospital 8 days after the surgery and had my stiches out a week later. > That biopsy gave me a diagnosis of fibrotic NSIP (non-specific interstitial pneumonitis). It has a longer life expectancy than some other types and is frequently responsive to treatment with steroids. So for me in spite of the difficulty it was worth it and given the same set of circumstances again I would do the same. Others have had different experiences and have differing opinions. > This is a very personal subjective decision. How is your overall health? I think it's safe to say that the more advanced your lung disease is the more difficult any type of surgery would be. I don't know where you get your medical care but one thing I would suggest is to get yourself seen at a university medical center with specialists in interstitial lung disease. I would do this before consenting to the biopsy. If you go to www.ipfnet.org it will take you to map with 16 (I think) major centers across the country that have specialized programs in interstitial lung disease. Where do you live? If you don't live close enough to one of these, there are other places. Just let us know where you are and folks can make suggestions. > > Hope all this helps and I'm glad you're here! > > Happy Mothers Day! > > Beth > Moderator > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > > > From: Margaret Leigh leigh.margaret@... > To: Breathe-Support > Sent: Sunday, May 10, 2009 9:11:55 AM > Subject: new > > > > > > > > > I'm new to the breathe-support group. Just recently diagnosed with Pulmonary Fibrosis. I am currently seeking a second opinion and am concerned about the open lung biopsy that has been recommended. Has any one been through this procedure? Was the information gained worth the risk? What information do you learn from the biopsy? > > By the way I am a working Grandmother, raising one wonderful grandson. On o2 since February. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2009 Report Share Posted May 10, 2009 Margaret I don't know where this second pulmonologist is, but if he's local to Chandler, AZ, I would doubt seriously him having experience with PF. Just a warning. I would want an opinion from a center specializing in these diseases. The majority of doctors just lack the experience with it, through no fault of their own, but because of not seeing it regularly. > > > From: Beth mbmurtha@... > Subject: Re: new > To: Breathe-Support > Date: Sunday, May 10, 2009, 2:36 PM > > > > > > > > > > > > > > Margaret, > Welcome to Breathe Support! We always welcome people with somewhat mixed feelings. Happy you found us but sad that you had reason to look for a group like this. I hope that you will find what you are looking for here in addition to some things you might not expect, things like understanding and friendship. > I was diagnosed with pulmonary fibrosis 3 years ago this month. I was 46 when I was diagnosed. Thank God I've been stable since my diagnosis. I've been on oxygen 24/7 since that time. > Like you are considering I had an open lung biopsy. Initially the intention was to do a VATS (video assisted thoracic surgery) which is somewhat less invasive. However I reacted badly to the anesthesia and the VATS was abandoned and the faster though more invasive open lung biopsy was done. I was on a ventilator for two days post op and had a chest tube for a couple of days after that. I was discharged from the hospital 8 days after the surgery and had my stiches out a week later. > That biopsy gave me a diagnosis of fibrotic NSIP (non-specific interstitial pneumonitis). It has a longer life expectancy than some other types and is frequently responsive to treatment with steroids. So for me in spite of the difficulty it was worth it and given the same set of circumstances again I would do the same. Others have had different experiences and have differing opinions. > This is a very personal subjective decision. How is your overall health? I think it's safe to say that the more advanced your lung disease is the more difficult any type of surgery would be. I don't know where you get your medical care but one thing I would suggest is to get yourself seen at a university medical center with specialists in interstitial lung disease. I would do this before consenting to the biopsy. If you go to www.ipfnet.org it will take you to map with 16 (I think) major centers across the country that have specialized programs in interstitial lung disease. Where do you live? If you don't live close enough to one of these, there are other places. Just let us know where you are and folks can make suggestions. > > Hope all this helps and I'm glad you're here! > > Happy Mothers Day! > > Beth > Moderator > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > > > From: Margaret Leigh leigh.margaret@... > To: Breathe-Support > Sent: Sunday, May 10, 2009 9:11:55 AM > Subject: new > > > > > > > > > I'm new to the breathe-support group. Just recently diagnosed with Pulmonary Fibrosis. I am currently seeking a second opinion and am concerned about the open lung biopsy that has been recommended. Has any one been through this procedure? Was the information gained worth the risk? What information do you learn from the biopsy? > > By the way I am a working Grandmother, raising one wonderful grandson. On o2 since February. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2009 Report Share Posted May 10, 2009 Margaret I don't know where this second pulmonologist is, but if he's local to Chandler, AZ, I would doubt seriously him having experience with PF. Just a warning. I would want an opinion from a center specializing in these diseases. The majority of doctors just lack the experience with it, through no fault of their own, but because of not seeing it regularly. > > > From: Beth mbmurtha@... > Subject: Re: new > To: Breathe-Support > Date: Sunday, May 10, 2009, 2:36 PM > > > > > > > > > > > > > > Margaret, > Welcome to Breathe Support! We always welcome people with somewhat mixed feelings. Happy you found us but sad that you had reason to look for a group like this. I hope that you will find what you are looking for here in addition to some things you might not expect, things like understanding and friendship. > I was diagnosed with pulmonary fibrosis 3 years ago this month. I was 46 when I was diagnosed. Thank God I've been stable since my diagnosis. I've been on oxygen 24/7 since that time. > Like you are considering I had an open lung biopsy. Initially the intention was to do a VATS (video assisted thoracic surgery) which is somewhat less invasive. However I reacted badly to the anesthesia and the VATS was abandoned and the faster though more invasive open lung biopsy was done. I was on a ventilator for two days post op and had a chest tube for a couple of days after that. I was discharged from the hospital 8 days after the surgery and had my stiches out a week later. > That biopsy gave me a diagnosis of fibrotic NSIP (non-specific interstitial pneumonitis). It has a longer life expectancy than some other types and is frequently responsive to treatment with steroids. So for me in spite of the difficulty it was worth it and given the same set of circumstances again I would do the same. Others have had different experiences and have differing opinions. > This is a very personal subjective decision. How is your overall health? I think it's safe to say that the more advanced your lung disease is the more difficult any type of surgery would be. I don't know where you get your medical care but one thing I would suggest is to get yourself seen at a university medical center with specialists in interstitial lung disease. I would do this before consenting to the biopsy. If you go to www.ipfnet.org it will take you to map with 16 (I think) major centers across the country that have specialized programs in interstitial lung disease. Where do you live? If you don't live close enough to one of these, there are other places. Just let us know where you are and folks can make suggestions. > > Hope all this helps and I'm glad you're here! > > Happy Mothers Day! > > Beth > Moderator > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > > > From: Margaret Leigh leigh.margaret@... > To: Breathe-Support > Sent: Sunday, May 10, 2009 9:11:55 AM > Subject: new > > > > > > > > > I'm new to the breathe-support group. Just recently diagnosed with Pulmonary Fibrosis. I am currently seeking a second opinion and am concerned about the open lung biopsy that has been recommended. Has any one been through this procedure? Was the information gained worth the risk? What information do you learn from the biopsy? > > By the way I am a working Grandmother, raising one wonderful grandson. On o2 since February. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2009 Report Share Posted May 10, 2009 Hi Bill, Where is Slatington, Pa? I am from Titusville originally. I live in ,Ga. now. I lived in Erie for 5 yrs. Joe Lamenskie JOE & JOANIE LAMENSKIE IPF JAN. 2008 -- Re: new Welcome to the group. My IPF was first picked up on a CT Scan. The pulmonologist ordered a high resolution CT Scan at that point and confirmed that's what it was and said I didn't need an open lung biopsy. I'm alone and couldn't really afford going to a teaching hospital, especially one that the insurance company says is "out of network". My doc, though, sent the results to the U. of Penn Lung Center in Philadelphia, who confirmed the diagnosis from the high rez CT Scan and said the open lung biopsy wasn't necessary, and arrangements have been made for me to go there for consultations. I had to quit work and I live alone, so if there were any procedures, it would be tough to drive the two hours back and forth. The docs I spoke with all seemed to think the open lung biopsy would do more harm than good with me. But every case is different. Listen to your pulmonologists and if you have questions, by all means get a second opinion. I did that, and my second opinion doc is MUCH more informed and aggressive than the first one was. Good luck! Bill IPF 10/08 Slatington, PA Recession-proof vacation ideas. Find free things to do in the U.S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2009 Report Share Posted May 10, 2009 Hi Bill, Where is Slatington, Pa? I am from Titusville originally. I live in ,Ga. now. I lived in Erie for 5 yrs. Joe Lamenskie JOE & JOANIE LAMENSKIE IPF JAN. 2008 -- Re: new Welcome to the group. My IPF was first picked up on a CT Scan. The pulmonologist ordered a high resolution CT Scan at that point and confirmed that's what it was and said I didn't need an open lung biopsy. I'm alone and couldn't really afford going to a teaching hospital, especially one that the insurance company says is "out of network". My doc, though, sent the results to the U. of Penn Lung Center in Philadelphia, who confirmed the diagnosis from the high rez CT Scan and said the open lung biopsy wasn't necessary, and arrangements have been made for me to go there for consultations. I had to quit work and I live alone, so if there were any procedures, it would be tough to drive the two hours back and forth. The docs I spoke with all seemed to think the open lung biopsy would do more harm than good with me. But every case is different. Listen to your pulmonologists and if you have questions, by all means get a second opinion. I did that, and my second opinion doc is MUCH more informed and aggressive than the first one was. Good luck! Bill IPF 10/08 Slatington, PA Recession-proof vacation ideas. Find free things to do in the U.S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2009 Report Share Posted May 10, 2009 Welcome to the group, Margaret!! CaroOSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi To: Breathe-Support Sent: Sunday, May 10, 2009 1:50:27 PMSubject: Re: new Hi Margaret...just a quick welcome here and to let you know you are in the best place you can be as we share this disease. You say you've been on O2 since Feb and dx (diagnosed) three weeks before. I think this is the first time I've heard it in this order...usually the dx is first and O2 follows along behind somewhere... I was dx Mar.2006 and have remained fairly stable since, a couple of dips in progression but I'm hanging in there. We'll get more acquainted as we go along. Again, welcome. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! new I'm new to the breathe-support group. Just recently diagnosed with Pulmonary Fibrosis. I am currently seeking a second opinion and am concerned about the open lung biopsy that has been recommended. Has any one been through this procedure? Was the information gained worth the risk? What information do you learn from the biopsy? By the way I am a working Grandmother, raising one wonderful grandson. On o2 since February. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2009 Report Share Posted May 10, 2009 Welcome to the group, Margaret!! CaroOSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi To: Breathe-Support Sent: Sunday, May 10, 2009 1:50:27 PMSubject: Re: new Hi Margaret...just a quick welcome here and to let you know you are in the best place you can be as we share this disease. You say you've been on O2 since Feb and dx (diagnosed) three weeks before. I think this is the first time I've heard it in this order...usually the dx is first and O2 follows along behind somewhere... I was dx Mar.2006 and have remained fairly stable since, a couple of dips in progression but I'm hanging in there. We'll get more acquainted as we go along. Again, welcome. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! new I'm new to the breathe-support group. Just recently diagnosed with Pulmonary Fibrosis. I am currently seeking a second opinion and am concerned about the open lung biopsy that has been recommended. Has any one been through this procedure? Was the information gained worth the risk? What information do you learn from the biopsy? By the way I am a working Grandmother, raising one wonderful grandson. On o2 since February. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2009 Report Share Posted May 10, 2009 Joe, Hubby and I still have family in and Covington, Ga. I graduated from Tech (when it was still Tech) in cosmetology. I'm originally from Covington. It's a small world after all. 33 FL IPF dx 1/06 > > Hi Bill, > Where is Slatington, Pa? I am from Titusville originally. I live in > ,Ga. now. I lived in Erie for 5 yrs. > Joe Lamenskie > > > JOE &JOANIE LAMENSKIE > IPF JAN. 2008 > > -- Re: new > > > > > Welcome to the group. My IPF was first picked up on a CT Scan. The > pulmonologist ordered a high resolution CT Scan at that point and confirmed > that's what it was and said I didn't need an open lung biopsy. I'm alone > and couldn't really afford going to a teaching hospital, especially one that > the insurance company says is " out of network " . My doc, though, sent the > results to the U. of Penn Lung Center in Philadelphia, who confirmed the > diagnosis from the high rez CT Scan and said the open lung biopsy wasn't > necessary, and arrangements have been made for me to go there for > consultations. I had to quit work and I live alone, so if there were any > procedures, it would be tough to drive the two hours back and forth. The > docs I spoke with all seemed to think the open lung biopsy would do more > harm than good with me. But every case is different. Listen to your > pulmonologists and if you have questions, by all means get a second opinion. > I did that, and my second opinion doc is MUCH more informed and aggressive > than the first one was. Good luck! > > Bill IPF 10/08 > Slatington, PA > > > > Recession-proof vacation ideas. Find free things to do in the U.S. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2009 Report Share Posted May 10, 2009 Joe, Hubby and I still have family in and Covington, Ga. I graduated from Tech (when it was still Tech) in cosmetology. I'm originally from Covington. It's a small world after all. 33 FL IPF dx 1/06 > > Hi Bill, > Where is Slatington, Pa? I am from Titusville originally. I live in > ,Ga. now. I lived in Erie for 5 yrs. > Joe Lamenskie > > > JOE &JOANIE LAMENSKIE > IPF JAN. 2008 > > -- Re: new > > > > > Welcome to the group. My IPF was first picked up on a CT Scan. The > pulmonologist ordered a high resolution CT Scan at that point and confirmed > that's what it was and said I didn't need an open lung biopsy. I'm alone > and couldn't really afford going to a teaching hospital, especially one that > the insurance company says is " out of network " . My doc, though, sent the > results to the U. of Penn Lung Center in Philadelphia, who confirmed the > diagnosis from the high rez CT Scan and said the open lung biopsy wasn't > necessary, and arrangements have been made for me to go there for > consultations. I had to quit work and I live alone, so if there were any > procedures, it would be tough to drive the two hours back and forth. The > docs I spoke with all seemed to think the open lung biopsy would do more > harm than good with me. But every case is different. Listen to your > pulmonologists and if you have questions, by all means get a second opinion. > I did that, and my second opinion doc is MUCH more informed and aggressive > than the first one was. Good luck! > > Bill IPF 10/08 > Slatington, PA > > > > Recession-proof vacation ideas. Find free things to do in the U.S. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2009 Report Share Posted May 10, 2009 Joe, Hubby and I still have family in and Covington, Ga. I graduated from Tech (when it was still Tech) in cosmetology. I'm originally from Covington. It's a small world after all. 33 FL IPF dx 1/06 > > Hi Bill, > Where is Slatington, Pa? I am from Titusville originally. I live in > ,Ga. now. I lived in Erie for 5 yrs. > Joe Lamenskie > > > JOE &JOANIE LAMENSKIE > IPF JAN. 2008 > > -- Re: new > > > > > Welcome to the group. My IPF was first picked up on a CT Scan. The > pulmonologist ordered a high resolution CT Scan at that point and confirmed > that's what it was and said I didn't need an open lung biopsy. I'm alone > and couldn't really afford going to a teaching hospital, especially one that > the insurance company says is " out of network " . My doc, though, sent the > results to the U. of Penn Lung Center in Philadelphia, who confirmed the > diagnosis from the high rez CT Scan and said the open lung biopsy wasn't > necessary, and arrangements have been made for me to go there for > consultations. I had to quit work and I live alone, so if there were any > procedures, it would be tough to drive the two hours back and forth. The > docs I spoke with all seemed to think the open lung biopsy would do more > harm than good with me. But every case is different. Listen to your > pulmonologists and if you have questions, by all means get a second opinion. > I did that, and my second opinion doc is MUCH more informed and aggressive > than the first one was. Good luck! > > Bill IPF 10/08 > Slatington, PA > > > > Recession-proof vacation ideas. Find free things to do in the U.S. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2009 Report Share Posted May 10, 2009 I taught Machine Shop at Tech.1988-1989. Do you get to often? When you do let us know and we can get together. I moved to Ga. In 1978 and lived in Gwinnett Co.(Norcross). Moved to Pike Co. In 1987 and to 1999. My wife is from Avon Lake area in Ohio. (Cleveland) Joe JOE & JOANIE LAMENSKIE IPF JAN. 2008 -- Re: new> > > > > Welcome to the group. My IPF was first picked up on a CT Scan. The> pulmonologist ordered a high resolution CT Scan at that point and confirmed> that's what it was and said I didn't need an open lung biopsy. I'm alone> and couldn't really afford going to a teaching hospital, especially one that> the insurance company says is "out of network". My doc, though, sent the> results to the U. of Penn Lung Center in Philadelphia, who confirmed the> diagnosis from the high rez CT Scan and said the open lung biopsy wasn't> necessary, and arrangements have been made for me to go there for> consultations. I had to quit work and I live alone, so if there were any> procedures, it would be tough to drive the two hours back and forth. The> docs I spoke with all seemed to think the open lung biopsy would do more> harm than good with me. But every case is different. Listen to your> pulmonologists and if you have questions, by all means get a second opinion.> I did that, and my second opinion doc is MUCH more informed and aggressive> than the first one was. Good luck!> > Bill IPF 10/08> Slatington, PA> > > > Recession-proof vacation ideas. Find free things to do in the U.S.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2009 Report Share Posted May 10, 2009 I taught Machine Shop at Tech.1988-1989. Do you get to often? When you do let us know and we can get together. I moved to Ga. In 1978 and lived in Gwinnett Co.(Norcross). Moved to Pike Co. In 1987 and to 1999. My wife is from Avon Lake area in Ohio. (Cleveland) Joe JOE & JOANIE LAMENSKIE IPF JAN. 2008 -- Re: new> > > > > Welcome to the group. My IPF was first picked up on a CT Scan. The> pulmonologist ordered a high resolution CT Scan at that point and confirmed> that's what it was and said I didn't need an open lung biopsy. I'm alone> and couldn't really afford going to a teaching hospital, especially one that> the insurance company says is "out of network". My doc, though, sent the> results to the U. of Penn Lung Center in Philadelphia, who confirmed the> diagnosis from the high rez CT Scan and said the open lung biopsy wasn't> necessary, and arrangements have been made for me to go there for> consultations. I had to quit work and I live alone, so if there were any> procedures, it would be tough to drive the two hours back and forth. The> docs I spoke with all seemed to think the open lung biopsy would do more> harm than good with me. But every case is different. Listen to your> pulmonologists and if you have questions, by all means get a second opinion.> I did that, and my second opinion doc is MUCH more informed and aggressive> than the first one was. Good luck!> > Bill IPF 10/08> Slatington, PA> > > > Recession-proof vacation ideas. Find free things to do in the U.S.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2009 Report Share Posted May 10, 2009 I taught Machine Shop at Tech.1988-1989. Do you get to often? When you do let us know and we can get together. I moved to Ga. In 1978 and lived in Gwinnett Co.(Norcross). Moved to Pike Co. In 1987 and to 1999. My wife is from Avon Lake area in Ohio. (Cleveland) Joe JOE & JOANIE LAMENSKIE IPF JAN. 2008 -- Re: new> > > > > Welcome to the group. My IPF was first picked up on a CT Scan. The> pulmonologist ordered a high resolution CT Scan at that point and confirmed> that's what it was and said I didn't need an open lung biopsy. I'm alone> and couldn't really afford going to a teaching hospital, especially one that> the insurance company says is "out of network". My doc, though, sent the> results to the U. of Penn Lung Center in Philadelphia, who confirmed the> diagnosis from the high rez CT Scan and said the open lung biopsy wasn't> necessary, and arrangements have been made for me to go there for> consultations. I had to quit work and I live alone, so if there were any> procedures, it would be tough to drive the two hours back and forth. The> docs I spoke with all seemed to think the open lung biopsy would do more> harm than good with me. But every case is different. Listen to your> pulmonologists and if you have questions, by all means get a second opinion.> I did that, and my second opinion doc is MUCH more informed and aggressive> than the first one was. Good luck!> > Bill IPF 10/08> Slatington, PA> > > > Recession-proof vacation ideas. Find free things to do in the U.S.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2009 Report Share Posted May 11, 2009 Hi hunnybunnybinky, Do you get to often? Look us up and we can get together for lunch or something. I taught at Tech 1988-1989, machine shop. I used to do industrial sales and went to Covington about once a month. Joe JOE & JOANIE LAMENSKIE IPF JAN. 2008 -- Re: new> > > > > Welcome to the group. My IPF was first picked up on a CT Scan. The> pulmonologist ordered a high resolution CT Scan at that point and confirmed> that's what it was and said I didn't need an open lung biopsy. I'm alone> and couldn't really afford going to a teaching hospital, especially one that> the insurance company says is "out of network". My doc, though, sent the> results to the U. of Penn Lung Center in Philadelphia, who confirmed the> diagnosis from the high rez CT Scan and said the open lung biopsy wasn't> necessary, and arrangements have been made for me to go there for> consultations. I had to quit work and I live alone, so if there were any> procedures, it would be tough to drive the two hours back and forth. The> docs I spoke with all seemed to think the open lung biopsy would do more> harm than good with me. But every case is different. Listen to your> pulmonologists and if you have questions, by all means get a second opinion.> I did that, and my second opinion doc is MUCH more informed and aggressive> than the first one was. Good luck!> > Bill IPF 10/08> Slatington, PA> > > > Recession-proof vacation ideas. Find free things to do in the U.S.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2009 Report Share Posted May 11, 2009 Hi hunnybunnybinky, Do you get to often? Look us up and we can get together for lunch or something. I taught at Tech 1988-1989, machine shop. I used to do industrial sales and went to Covington about once a month. Joe JOE & JOANIE LAMENSKIE IPF JAN. 2008 -- Re: new> > > > > Welcome to the group. My IPF was first picked up on a CT Scan. The> pulmonologist ordered a high resolution CT Scan at that point and confirmed> that's what it was and said I didn't need an open lung biopsy. I'm alone> and couldn't really afford going to a teaching hospital, especially one that> the insurance company says is "out of network". My doc, though, sent the> results to the U. of Penn Lung Center in Philadelphia, who confirmed the> diagnosis from the high rez CT Scan and said the open lung biopsy wasn't> necessary, and arrangements have been made for me to go there for> consultations. I had to quit work and I live alone, so if there were any> procedures, it would be tough to drive the two hours back and forth. The> docs I spoke with all seemed to think the open lung biopsy would do more> harm than good with me. But every case is different. Listen to your> pulmonologists and if you have questions, by all means get a second opinion.> I did that, and my second opinion doc is MUCH more informed and aggressive> than the first one was. Good luck!> > Bill IPF 10/08> Slatington, PA> > > > Recession-proof vacation ideas. Find free things to do in the U.S.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2009 Report Share Posted May 11, 2009 Hi hunnybunnybinky, Do you get to often? Look us up and we can get together for lunch or something. I taught at Tech 1988-1989, machine shop. I used to do industrial sales and went to Covington about once a month. Joe JOE & JOANIE LAMENSKIE IPF JAN. 2008 -- Re: new> > > > > Welcome to the group. My IPF was first picked up on a CT Scan. The> pulmonologist ordered a high resolution CT Scan at that point and confirmed> that's what it was and said I didn't need an open lung biopsy. I'm alone> and couldn't really afford going to a teaching hospital, especially one that> the insurance company says is "out of network". My doc, though, sent the> results to the U. of Penn Lung Center in Philadelphia, who confirmed the> diagnosis from the high rez CT Scan and said the open lung biopsy wasn't> necessary, and arrangements have been made for me to go there for> consultations. I had to quit work and I live alone, so if there were any> procedures, it would be tough to drive the two hours back and forth. The> docs I spoke with all seemed to think the open lung biopsy would do more> harm than good with me. But every case is different. Listen to your> pulmonologists and if you have questions, by all means get a second opinion.> I did that, and my second opinion doc is MUCH more informed and aggressive> than the first one was. Good luck!> > Bill IPF 10/08> Slatington, PA> > > > Recession-proof vacation ideas. Find free things to do in the U.S.> Quote Link to comment Share on other sites More sharing options...
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