Guest guest Posted February 2, 2010 Report Share Posted February 2, 2010 MB, when you go to a hospital that has a center of excellance is the tests they do the same as what they do if you are going for a transplant evaluation?To: Breathe-Support Sent: Tue, February 2, 2010 6:43:15 PMSubject: Re: Hi peeps - again , Wow you have been through it girlfriend! I'm sorry you've had such a rough go of it recently. Chest tubes are just plain evil and I hate them. When I had my lung biopsy the chest tube was the worst part of it. Lord I hate those things. I know they're necessary sometimes but they are evil. I'm so glad you are feeling better and you are back posting with us again. We've missed you! I'm curious about something... .you mention they "cleaned out some of the fibrosis". I've never heard of anything like that before. What did they do exactly? It sounds interesting. So happy you are back! Keep gettin better ! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: lsmith7892006 <lbsmith789@sbcgloba l.net>To: Breathe-Support@ yahoogroups. comSent: Tue, February 2, 2010 5:58:25 PMSubject: Hi peeps - again Just popping back in for a spell to say HI and catch up. Looks like the Board is doing what the Board does - cheering and informing and supporting and gritching a little where gritching is needed.Hi all! Hi Newbies! Welcome.Well what is new with me? I had a pneumothorax October 2 with accompanying chest tube, again December 26 without the tube, and again on January 12 with a VATS to glue the Evil Twin (right lung) to my chest wall and also to clean out some of the fibrosis, with accompanying 2 chest tubes. My right side looks like the shower scene from Psycho.But I feel better now and my sats are better without some of the cloggy stuff in there. I don't recommend 2 tubes at the time - especially pulling 2 at the same time. Way not cool. But did I mention feeling better? Hopefully the surgeon and pulmodude will release next week so I can go back to work.Also I have a new psychiatrist who says I am Level 2 bipolar and depressed - ya think? And also the new psychologist who is helping me work on stress. Why would I be stressed?And then there is the rheumatologist who says I am going to need a new right knee what with the RA and all and that still nothing shows up on my lupus test but he agrees something is there and we are going to treat it. And he upped my Lexapro and added hydrocodone for the pain. But I did mention I feel better, right? He is the one who invited the psychiatrist into the picture. Might have been the crying wall-eyed fit I had in his office that day. But I feel better. I am so tired of all this non-specific crap that is eating away at me relentlessly.All of that to say I am hoping the last 3 months of gathering-gloom have been worth the light I see just right up there a little ways. Turns out depression feeds illness feeds depression. Go away all ye evil depressions. Be gone. Don't we wish it was that simple? But I do feel better. S, Lubbock TXNSIP w/PF 12/2006 et al Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2010 Report Share Posted February 2, 2010 , A "center of excellence" when it comes to pulmonary fibrosis and specifically the hospitals listed at ipfnet.org just means that these hospitals have agreed to coordinate research efforts and communicate regularly regarding patient care standards and to a limited extent treatment criteria. It does not mean that you will get the same treatment or have similar experiences at all of the hospitals. Peoples experiences vary tremendously and some are more patient centered than others. Being evaluated at one of the centers of excellence or any universtiy medical center with specialists in interstitial lung disease is not the same thing as a transplant evaluation. One is a diagnostic evaluation and the other is a transplant evaluation. The purpose of a diagnostic evaluation is to determine what kind of interstitial lung disease one has and to see if it's possible to determine a cause for the ILD and pulmonary fibrosis. Finding a cause is important because it often gives the doctors something to treat and by treating the underlying cause they are often able to stablize the lung disease. The transplant evaluation is an close look at a persons overall health in order to determine whether they are a good candidate for the rigors of lung transplant. They will look at everything from your heart to your colon to your teeth and everything in between. Any problems that they find will either have to be corrected or they may prevent someone from being listed for transplant. Let me know if something here isn't clear. Hope that helped some! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Tue, February 2, 2010 8:49:49 PMSubject: Re: center for excellance MB, when you go to a hospital that has a center of excellance is the tests they do the same as what they do if you are going for a transplant evaluation? From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Tue, February 2, 2010 6:43:15 PMSubject: Re: Hi peeps - again , Wow you have been through it girlfriend! I'm sorry you've had such a rough go of it recently. Chest tubes are just plain evil and I hate them. When I had my lung biopsy the chest tube was the worst part of it. Lord I hate those things. I know they're necessary sometimes but they are evil. I'm so glad you are feeling better and you are back posting with us again. We've missed you! I'm curious about something... .you mention they "cleaned out some of the fibrosis". I've never heard of anything like that before. What did they do exactly? It sounds interesting. So happy you are back! Keep gettin better ! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: lsmith7892006 <lbsmith789@sbcgloba l.net>To: Breathe-Support@ yahoogroups. comSent: Tue, February 2, 2010 5:58:25 PMSubject: Hi peeps - again Just popping back in for a spell to say HI and catch up. Looks like the Board is doing what the Board does - cheering and informing and supporting and gritching a little where gritching is needed.Hi all! Hi Newbies! Welcome.Well what is new with me? I had a pneumothorax October 2 with accompanying chest tube, again December 26 without the tube, and again on January 12 with a VATS to glue the Evil Twin (right lung) to my chest wall and also to clean out some of the fibrosis, with accompanying 2 chest tubes. My right side looks like the shower scene from Psycho.But I feel better now and my sats are better without some of the cloggy stuff in there. I don't recommend 2 tubes at the time - especially pulling 2 at the same time. Way not cool. But did I mention feeling better? Hopefully the surgeon and pulmodude will release next week so I can go back to work.Also I have a new psychiatrist who says I am Level 2 bipolar and depressed - ya think? And also the new psychologist who is helping me work on stress. Why would I be stressed?And then there is the rheumatologist who says I am going to need a new right knee what with the RA and all and that still nothing shows up on my lupus test but he agrees something is there and we are going to treat it. And he upped my Lexapro and added hydrocodone for the pain. But I did mention I feel better, right? He is the one who invited the psychiatrist into the picture. Might have been the crying wall-eyed fit I had in his office that day. But I feel better. I am so tired of all this non-specific crap that is eating away at me relentlessly.All of that to say I am hoping the last 3 months of gathering-gloom have been worth the light I see just right up there a little ways. Turns out depression feeds illness feeds depression. Go away all ye evil depressions. Be gone. Don't we wish it was that simple? But I do feel better. S, Lubbock TXNSIP w/PF 12/2006 et al Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2010 Report Share Posted February 3, 2010 Beth,When you go for the transplant evaluation are they checking to see if you have IPF and what can be done before a transplant is even discussed. Listening to the Webinair the Dr. said to get a second opinion. Do they also do a second opinion and tell you what you have before they do the next step. It seems that they are just thinking transplant and not what can be done before that.From: Beth To: Breathe-Support Sent: Tue, February 2, 2010 9:22:19 PMSubject: Re: center for excellance , A "center of excellence" when it comes to pulmonary fibrosis and specifically the hospitals listed at ipfnet.org just means that these hospitals have agreed to coordinate research efforts and communicate regularly regarding patient care standards and to a limited extent treatment criteria. It does not mean that you will get the same treatment or have similar experiences at all of the hospitals. Peoples experiences vary tremendously and some are more patient centered than others. Being evaluated at one of the centers of excellence or any universtiy medical center with specialists in interstitial lung disease is not the same thing as a transplant evaluation. One is a diagnostic evaluation and the other is a transplant evaluation. The purpose of a diagnostic evaluation is to determine what kind of interstitial lung disease one has and to see if it's possible to determine a cause for the ILD and pulmonary fibrosis. Finding a cause is important because it often gives the doctors something to treat and by treating the underlying cause they are often able to stablize the lung disease. The transplant evaluation is an close look at a persons overall health in order to determine whether they are a good candidate for the rigors of lung transplant. They will look at everything from your heart to your colon to your teeth and everything in between. Any problems that they find will either have to be corrected or they may prevent someone from being listed for transplant. Let me know if something here isn't clear. Hope that helped some! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Terry Oettinger <iltopaint (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Tue, February 2, 2010 8:49:49 PMSubject: Re: center for excellance MB, when you go to a hospital that has a center of excellance is the tests they do the same as what they do if you are going for a transplant evaluation? From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Tue, February 2, 2010 6:43:15 PMSubject: Re: Hi peeps - again , Wow you have been through it girlfriend! I'm sorry you've had such a rough go of it recently. Chest tubes are just plain evil and I hate them. When I had my lung biopsy the chest tube was the worst part of it. Lord I hate those things. I know they're necessary sometimes but they are evil. I'm so glad you are feeling better and you are back posting with us again. We've missed you! I'm curious about something... .you mention they "cleaned out some of the fibrosis". I've never heard of anything like that before. What did they do exactly? It sounds interesting. So happy you are back! Keep gettin better ! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: lsmith7892006 <lbsmith789@sbcgloba l.net>To: Breathe-Support@ yahoogroups. comSent: Tue, February 2, 2010 5:58:25 PMSubject: Hi peeps - again Just popping back in for a spell to say HI and catch up. Looks like the Board is doing what the Board does - cheering and informing and supporting and gritching a little where gritching is needed.Hi all! Hi Newbies! Welcome.Well what is new with me? I had a pneumothorax October 2 with accompanying chest tube, again December 26 without the tube, and again on January 12 with a VATS to glue the Evil Twin (right lung) to my chest wall and also to clean out some of the fibrosis, with accompanying 2 chest tubes. My right side looks like the shower scene from Psycho.But I feel better now and my sats are better without some of the cloggy stuff in there. I don't recommend 2 tubes at the time - especially pulling 2 at the same time. Way not cool. But did I mention feeling better? Hopefully the surgeon and pulmodude will release next week so I can go back to work.Also I have a new psychiatrist who says I am Level 2 bipolar and depressed - ya think? And also the new psychologist who is helping me work on stress. Why would I be stressed?And then there is the rheumatologist who says I am going to need a new right knee what with the RA and all and that still nothing shows up on my lupus test but he agrees something is there and we are going to treat it. And he upped my Lexapro and added hydrocodone for the pain. But I did mention I feel better, right? He is the one who invited the psychiatrist into the picture. Might have been the crying wall-eyed fit I had in his office that day. But I feel better. I am so tired of all this non-specific crap that is eating away at me relentlessly.All of that to say I am hoping the last 3 months of gathering-gloom have been worth the light I see just right up there a little ways. Turns out depression feeds illness feeds depression. Go away all ye evil depressions. Be gone. Don't we wish it was that simple? But I do feel better. S, Lubbock TXNSIP w/PF 12/2006 et al Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2010 Report Share Posted February 3, 2010 , A transplant evaluation is only that, an evaluation to see if you are healthy enough to get through the demanding process of lung transplant. By the time you have a transplant evaluation your diagnosis should be firm. By this time you will know if it's IPF or some other form of interstitial lung disease. During the webinar I believe the second opinion they are referring to is diagnostic. You want to be certain of the type of ILD that you have in order to know whether or not there is treatment that could help. You are correct in that a transplant evaluation is very specific. The doctors at that point are not trying to find treatment options for you. They are only evaluating whether or not you are a suitable candidate for lung transplant. It is up to you prior to any transplant evaluation to get a second opinion or whatever you need to be certain of your diagnosis and what might be done treatment wise to help you. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Wed, February 3, 2010 8:08:59 AMSubject: Re: center for excellance Beth,When you go for the transplant evaluation are they checking to see if you have IPF and what can be done before a transplant is even discussed. Listening to the Webinair the Dr. said to get a second opinion. Do they also do a second opinion and tell you what you have before they do the next step. It seems that they are just thinking transplant and not what can be done before that. From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Tue, February 2, 2010 9:22:19 PMSubject: Re: center for excellance , A "center of excellence" when it comes to pulmonary fibrosis and specifically the hospitals listed at ipfnet.org just means that these hospitals have agreed to coordinate research efforts and communicate regularly regarding patient care standards and to a limited extent treatment criteria. It does not mean that you will get the same treatment or have similar experiences at all of the hospitals. Peoples experiences vary tremendously and some are more patient centered than others. Being evaluated at one of the centers of excellence or any universtiy medical center with specialists in interstitial lung disease is not the same thing as a transplant evaluation. One is a diagnostic evaluation and the other is a transplant evaluation. The purpose of a diagnostic evaluation is to determine what kind of interstitial lung disease one has and to see if it's possible to determine a cause for the ILD and pulmonary fibrosis. Finding a cause is important because it often gives the doctors something to treat and by treating the underlying cause they are often able to stablize the lung disease. The transplant evaluation is an close look at a persons overall health in order to determine whether they are a good candidate for the rigors of lung transplant. They will look at everything from your heart to your colon to your teeth and everything in between. Any problems that they find will either have to be corrected or they may prevent someone from being listed for transplant. Let me know if something here isn't clear. Hope that helped some! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Terry Oettinger <iltopaint (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Tue, February 2, 2010 8:49:49 PMSubject: Re: center for excellance MB, when you go to a hospital that has a center of excellance is the tests they do the same as what they do if you are going for a transplant evaluation? From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Tue, February 2, 2010 6:43:15 PMSubject: Re: Hi peeps - again , Wow you have been through it girlfriend! I'm sorry you've had such a rough go of it recently. Chest tubes are just plain evil and I hate them. When I had my lung biopsy the chest tube was the worst part of it. Lord I hate those things. I know they're necessary sometimes but they are evil. I'm so glad you are feeling better and you are back posting with us again. We've missed you! I'm curious about something... .you mention they "cleaned out some of the fibrosis". I've never heard of anything like that before. What did they do exactly? It sounds interesting. So happy you are back! Keep gettin better ! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: lsmith7892006 <lbsmith789@sbcgloba l.net>To: Breathe-Support@ yahoogroups. comSent: Tue, February 2, 2010 5:58:25 PMSubject: Hi peeps - again Just popping back in for a spell to say HI and catch up. Looks like the Board is doing what the Board does - cheering and informing and supporting and gritching a little where gritching is needed.Hi all! Hi Newbies! Welcome.Well what is new with me? I had a pneumothorax October 2 with accompanying chest tube, again December 26 without the tube, and again on January 12 with a VATS to glue the Evil Twin (right lung) to my chest wall and also to clean out some of the fibrosis, with accompanying 2 chest tubes. My right side looks like the shower scene from Psycho.But I feel better now and my sats are better without some of the cloggy stuff in there. I don't recommend 2 tubes at the time - especially pulling 2 at the same time. Way not cool. But did I mention feeling better? Hopefully the surgeon and pulmodude will release next week so I can go back to work.Also I have a new psychiatrist who says I am Level 2 bipolar and depressed - ya think? And also the new psychologist who is helping me work on stress. Why would I be stressed?And then there is the rheumatologist who says I am going to need a new right knee what with the RA and all and that still nothing shows up on my lupus test but he agrees something is there and we are going to treat it. And he upped my Lexapro and added hydrocodone for the pain. But I did mention I feel better, right? He is the one who invited the psychiatrist into the picture. Might have been the crying wall-eyed fit I had in his office that day. But I feel better. I am so tired of all this non-specific crap that is eating away at me relentlessly.All of that to say I am hoping the last 3 months of gathering-gloom have been worth the light I see just right up there a little ways. Turns out depression feeds illness feeds depression. Go away all ye evil depressions. Be gone. Don't we wish it was that simple? But I do feel better. S, Lubbock TXNSIP w/PF 12/2006 et al Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2010 Report Share Posted February 3, 2010 Beth,I guess I am confused now. I went to the first evaluation because that was what the first pulmodude told me to do. They told me that they don't think its IPF. I was told that I have ILD but not much scarring. What should I do now? I don't want to go through all this testing if something else can be done. Do you have any suggestions? To: Breathe-Support Sent: Wed, February 3, 2010 8:29:44 AMSubject: Re: center for excellance , A transplant evaluation is only that, an evaluation to see if you are healthy enough to get through the demanding process of lung transplant. By the time you have a transplant evaluation your diagnosis should be firm. By this time you will know if it's IPF or some other form of interstitial lung disease. During the webinar I believe the second opinion they are referring to is diagnostic. You want to be certain of the type of ILD that you have in order to know whether or not there is treatment that could help. You are correct in that a transplant evaluation is very specific. The doctors at that point are not trying to find treatment options for you. They are only evaluating whether or not you are a suitable candidate for lung transplant. It is up to you prior to any transplant evaluation to get a second opinion or whatever you need to be certain of your diagnosis and what might be done treatment wise to help you. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Terry Oettinger <iltopaint (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Wed, February 3, 2010 8:08:59 AMSubject: Re: center for excellance Beth,When you go for the transplant evaluation are they checking to see if you have IPF and what can be done before a transplant is even discussed. Listening to the Webinair the Dr. said to get a second opinion. Do they also do a second opinion and tell you what you have before they do the next step. It seems that they are just thinking transplant and not what can be done before that. From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Tue, February 2, 2010 9:22:19 PMSubject: Re: center for excellance , A "center of excellence" when it comes to pulmonary fibrosis and specifically the hospitals listed at ipfnet.org just means that these hospitals have agreed to coordinate research efforts and communicate regularly regarding patient care standards and to a limited extent treatment criteria. It does not mean that you will get the same treatment or have similar experiences at all of the hospitals. Peoples experiences vary tremendously and some are more patient centered than others. Being evaluated at one of the centers of excellence or any universtiy medical center with specialists in interstitial lung disease is not the same thing as a transplant evaluation. One is a diagnostic evaluation and the other is a transplant evaluation. The purpose of a diagnostic evaluation is to determine what kind of interstitial lung disease one has and to see if it's possible to determine a cause for the ILD and pulmonary fibrosis. Finding a cause is important because it often gives the doctors something to treat and by treating the underlying cause they are often able to stablize the lung disease. The transplant evaluation is an close look at a persons overall health in order to determine whether they are a good candidate for the rigors of lung transplant. They will look at everything from your heart to your colon to your teeth and everything in between. Any problems that they find will either have to be corrected or they may prevent someone from being listed for transplant. Let me know if something here isn't clear. Hope that helped some! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Terry Oettinger <iltopaint (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Tue, February 2, 2010 8:49:49 PMSubject: Re: center for excellance MB, when you go to a hospital that has a center of excellance is the tests they do the same as what they do if you are going for a transplant evaluation? From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Tue, February 2, 2010 6:43:15 PMSubject: Re: Hi peeps - again , Wow you have been through it girlfriend! I'm sorry you've had such a rough go of it recently. Chest tubes are just plain evil and I hate them. When I had my lung biopsy the chest tube was the worst part of it. Lord I hate those things. I know they're necessary sometimes but they are evil. I'm so glad you are feeling better and you are back posting with us again. We've missed you! I'm curious about something... .you mention they "cleaned out some of the fibrosis". I've never heard of anything like that before. What did they do exactly? It sounds interesting. So happy you are back! Keep gettin better ! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: lsmith7892006 <lbsmith789@sbcgloba l.net>To: Breathe-Support@ yahoogroups. comSent: Tue, February 2, 2010 5:58:25 PMSubject: Hi peeps - again Just popping back in for a spell to say HI and catch up. Looks like the Board is doing what the Board does - cheering and informing and supporting and gritching a little where gritching is needed.Hi all! Hi Newbies! Welcome.Well what is new with me? I had a pneumothorax October 2 with accompanying chest tube, again December 26 without the tube, and again on January 12 with a VATS to glue the Evil Twin (right lung) to my chest wall and also to clean out some of the fibrosis, with accompanying 2 chest tubes. My right side looks like the shower scene from Psycho.But I feel better now and my sats are better without some of the cloggy stuff in there. I don't recommend 2 tubes at the time - especially pulling 2 at the same time. Way not cool. But did I mention feeling better? Hopefully the surgeon and pulmodude will release next week so I can go back to work.Also I have a new psychiatrist who says I am Level 2 bipolar and depressed - ya think? And also the new psychologist who is helping me work on stress. Why would I be stressed?And then there is the rheumatologist who says I am going to need a new right knee what with the RA and all and that still nothing shows up on my lupus test but he agrees something is there and we are going to treat it. And he upped my Lexapro and added hydrocodone for the pain. But I did mention I feel better, right? He is the one who invited the psychiatrist into the picture. Might have been the crying wall-eyed fit I had in his office that day. But I feel better. I am so tired of all this non-specific crap that is eating away at me relentlessly.All of that to say I am hoping the last 3 months of gathering-gloom have been worth the light I see just right up there a little ways. Turns out depression feeds illness feeds depression. Go away all ye evil depressions. Be gone. Don't we wish it was that simple? But I do feel better. S, Lubbock TXNSIP w/PF 12/2006 et al Quote Link to comment Share on other sites More sharing options...
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