Guest guest Posted February 19, 2009 Report Share Posted February 19, 2009 Since we are on the subject of eating, I was meaning to ask if anyone else has problems breathing when they eat? I have just noticed this happening to me over the last couple of months and it is really frustrating. Even if I eat small bites and eat slow, I still get short of breath. I am going back to Birmingham to UAB the first week of March and am definitely going to ask for some helpful hints. Was just curious if this is one of the things that is "supposed" to happen with UIP. CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08Mississippi To: Breathe-Support Sent: Wednesday, February 18, 2009 8:15:12 PMSubject: weight support margaretso glad you had a great day; send the receipe for soup.. mine wasn't such a good day, felt bloated all day and of course like you said short of breath when over eat. but it was an emotional eating frenzy.. plan to try and eat healthy starting again.. Like MB says it isn't about losing weight it is about learning to eat right and still enjoy your food. To learn not live to eat. which i think at times is my theory.. Keep up the good work. patti nj, ipf 7'06, raynauds, scleroderma, PH 2'07> >> > Jack,> > Dr. Weil's website has alot of information on an anti-inflammatory diet. Here is a link to his food pyramid:> > http://www.drweil. com/drw/u/ ART02995/ Dr-Weil-Anti- Inflammatory- Food-Pyramid. html> > > > I realize that this may be controversial to some people.. I'm not saying anyone should make the same changes I have, just sharing what I've been working on diet wise. I feel very comfortable with this partly because I'm working with a nutritionist at Duke who is completely familiar with my medical situation and my history and more importantly I' m doing this with the blessing and encouragement of both my pulmonologist and my rheumatologist at Duke.> >  > > Beth in North Carolina> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositi s 11/08> >  > > "May you never take one single breath for granted"> > > > > > > > > > ____________ _________ _________ __> > From: Jack Marshall mrshlljck@ .> > To: Breathe-Support@ yahoogroups. com> > Sent: Tuesday, February 17, 2009 4:04:42 PM> > Subject: Re: Re: Support to Lose Weight> > > > > > MB, I've never heard of an anti-inflammatory diet, but I am very interested in one. Can you share info> > on what it consists of?> >  Jack> > 79/IPF - UIP/dx06/05 Maine > > > > > > > > > > ____________ _________ _________ __> > From: Beth mbmurtha (AT) yahoo (DOT) com>> > To: Breathe-Support@ yahoogroups. com> > Sent: Tuesday, February 17, 2009 2:35:19 PM> > Subject: Re: Re: Support to Lose Weight> > > > > > Sue,> > I struggle with the same issue that you've all been talking about. I need to lose around the same amount as you do in order to go any further with transplant. Fortunately I am still considered way to healthy (I find that somewhat amusing) to be considered for transplant, overweight or not. But I also realize that could change at any time. > > My nsip seems to have been caused by the dermatomyositis which means that theoretically controlling my auto-immune condition helps to prevent worsening of my lung condition. Can't count on that obviously. Who do you see at Duke? I see Lake on, he has told me that life expectancy with nsip (both fibrotic and cellular) varies tremendously from stats similar to IPF as you said to literally decades of stability. It may ultimately depend on what caused it. > > > > What I'm doing right now is radically different from anything else I've ever done. I've begun working with a nutritionist from the Duke Center for Living and have begun eating an 'anti-inflammation' diet. I'm not at all focusing on losing weight (though I am) it's more about choosing to eat foods that can help my body be as healthy as possible. I don't know how this will work for me over the long haul but I'm giving it a go cause what I've done up till now hasn't gotten me anything but aggravation.> > > > Beth in North Carolina> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositi s 11/08> >  > > "May you never take one single breath for granted"> > > > > > > > > > ____________ _________ _________ __> > From: Sue Dassel sdassel (AT) verizon (DOT) net>> > To: Breathe-Support@ yahoogroups. com> > Sent: Tuesday, February 17, 2009 10:17:40 AM> > Subject: Re: Support to Lose Weight> > > > > > Hi friends: I'd like to jump in here. I have always had a weight problem and have also been on Cellcept (3000 mg / day) and prednisone (now down to 5 mg) for the past 15 months. I gained about 25 lbs and now need to lose 100 lbs to be considered for a transplant at Duke. That 100 lbs might as well be 1000 lbs. I am looking into a lap band or bypass and would be approved from an ins. Standpoint, but before being considered Ihave to get an EKG, and a recent PFT, a psychologist eval and some other test. I am in the process of getting this info together. My pulmodoc at Duke has hesitantly said he would approve of this procedure for me. My local pulmodoc told me it's almost impossible to lose weight on prednisone and I don't want to go through a lap band procedure if I'm only going to lose a small amount of weight. The other thing he told me was that fibrotic NSIP is very close to IPF in terms of life expectancy.  My last PFT done> > here locally was not very good from the diffusion standpoint â€"only 19% of predictedâ€"but the lung volume and other tests were not bad at all.      Doc said there may be a variation in equipment from here to Duke so I guess my test in March will tell more.> > I am going back to Duke in March, and I have a feeling he is going to change the meds and probably up the prednisone. I am really in a quandary.> > I know part of my eating is psychological and the thought of a diet when dealing with this terminal disease is almost too much for me to handle. I don't want to feel deprived. It's not that I eat much in quantity because I feel terrible if I have overeaten, I just make the wrong choices so I don't feel deprived.> > There, I got it off my chest.. Any suggestions/ recommendations would be welcome.> > Sue D.> > 62 yr old, Fibrotic NSIP dx 9/07, VA> >  > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2009 Report Share Posted February 19, 2009 Since we are on the subject of eating, I was meaning to ask if anyone else has problems breathing when they eat? I have just noticed this happening to me over the last couple of months and it is really frustrating. Even if I eat small bites and eat slow, I still get short of breath. I am going back to Birmingham to UAB the first week of March and am definitely going to ask for some helpful hints. Was just curious if this is one of the things that is "supposed" to happen with UIP. CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08Mississippi To: Breathe-Support Sent: Wednesday, February 18, 2009 8:15:12 PMSubject: weight support margaretso glad you had a great day; send the receipe for soup.. mine wasn't such a good day, felt bloated all day and of course like you said short of breath when over eat. but it was an emotional eating frenzy.. plan to try and eat healthy starting again.. Like MB says it isn't about losing weight it is about learning to eat right and still enjoy your food. To learn not live to eat. which i think at times is my theory.. Keep up the good work. patti nj, ipf 7'06, raynauds, scleroderma, PH 2'07> >> > Jack,> > Dr. Weil's website has alot of information on an anti-inflammatory diet. Here is a link to his food pyramid:> > http://www.drweil. com/drw/u/ ART02995/ Dr-Weil-Anti- Inflammatory- Food-Pyramid. html> > > > I realize that this may be controversial to some people.. I'm not saying anyone should make the same changes I have, just sharing what I've been working on diet wise. I feel very comfortable with this partly because I'm working with a nutritionist at Duke who is completely familiar with my medical situation and my history and more importantly I' m doing this with the blessing and encouragement of both my pulmonologist and my rheumatologist at Duke.> >  > > Beth in North Carolina> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositi s 11/08> >  > > "May you never take one single breath for granted"> > > > > > > > > > ____________ _________ _________ __> > From: Jack Marshall mrshlljck@ .> > To: Breathe-Support@ yahoogroups. com> > Sent: Tuesday, February 17, 2009 4:04:42 PM> > Subject: Re: Re: Support to Lose Weight> > > > > > MB, I've never heard of an anti-inflammatory diet, but I am very interested in one. Can you share info> > on what it consists of?> >  Jack> > 79/IPF - UIP/dx06/05 Maine > > > > > > > > > > ____________ _________ _________ __> > From: Beth mbmurtha (AT) yahoo (DOT) com>> > To: Breathe-Support@ yahoogroups. com> > Sent: Tuesday, February 17, 2009 2:35:19 PM> > Subject: Re: Re: Support to Lose Weight> > > > > > Sue,> > I struggle with the same issue that you've all been talking about. I need to lose around the same amount as you do in order to go any further with transplant. Fortunately I am still considered way to healthy (I find that somewhat amusing) to be considered for transplant, overweight or not. But I also realize that could change at any time. > > My nsip seems to have been caused by the dermatomyositis which means that theoretically controlling my auto-immune condition helps to prevent worsening of my lung condition. Can't count on that obviously. Who do you see at Duke? I see Lake on, he has told me that life expectancy with nsip (both fibrotic and cellular) varies tremendously from stats similar to IPF as you said to literally decades of stability. It may ultimately depend on what caused it. > > > > What I'm doing right now is radically different from anything else I've ever done. I've begun working with a nutritionist from the Duke Center for Living and have begun eating an 'anti-inflammation' diet. I'm not at all focusing on losing weight (though I am) it's more about choosing to eat foods that can help my body be as healthy as possible. I don't know how this will work for me over the long haul but I'm giving it a go cause what I've done up till now hasn't gotten me anything but aggravation.> > > > Beth in North Carolina> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositi s 11/08> >  > > "May you never take one single breath for granted"> > > > > > > > > > ____________ _________ _________ __> > From: Sue Dassel sdassel (AT) verizon (DOT) net>> > To: Breathe-Support@ yahoogroups. com> > Sent: Tuesday, February 17, 2009 10:17:40 AM> > Subject: Re: Support to Lose Weight> > > > > > Hi friends: I'd like to jump in here. I have always had a weight problem and have also been on Cellcept (3000 mg / day) and prednisone (now down to 5 mg) for the past 15 months. I gained about 25 lbs and now need to lose 100 lbs to be considered for a transplant at Duke. That 100 lbs might as well be 1000 lbs. I am looking into a lap band or bypass and would be approved from an ins. Standpoint, but before being considered Ihave to get an EKG, and a recent PFT, a psychologist eval and some other test. I am in the process of getting this info together. My pulmodoc at Duke has hesitantly said he would approve of this procedure for me. My local pulmodoc told me it's almost impossible to lose weight on prednisone and I don't want to go through a lap band procedure if I'm only going to lose a small amount of weight. The other thing he told me was that fibrotic NSIP is very close to IPF in terms of life expectancy.  My last PFT done> > here locally was not very good from the diffusion standpoint â€"only 19% of predictedâ€"but the lung volume and other tests were not bad at all.      Doc said there may be a variation in equipment from here to Duke so I guess my test in March will tell more.> > I am going back to Duke in March, and I have a feeling he is going to change the meds and probably up the prednisone. I am really in a quandary.> > I know part of my eating is psychological and the thought of a diet when dealing with this terminal disease is almost too much for me to handle. I don't want to feel deprived. It's not that I eat much in quantity because I feel terrible if I have overeaten, I just make the wrong choices so I don't feel deprived.> > There, I got it off my chest.. Any suggestions/ recommendations would be welcome.> > Sue D.> > 62 yr old, Fibrotic NSIP dx 9/07, VA> >  > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2009 Report Share Posted February 19, 2009 Since we are on the subject of eating, I was meaning to ask if anyone else has problems breathing when they eat? I have just noticed this happening to me over the last couple of months and it is really frustrating. Even if I eat small bites and eat slow, I still get short of breath. I am going back to Birmingham to UAB the first week of March and am definitely going to ask for some helpful hints. Was just curious if this is one of the things that is "supposed" to happen with UIP. CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08Mississippi To: Breathe-Support Sent: Wednesday, February 18, 2009 8:15:12 PMSubject: weight support margaretso glad you had a great day; send the receipe for soup.. mine wasn't such a good day, felt bloated all day and of course like you said short of breath when over eat. but it was an emotional eating frenzy.. plan to try and eat healthy starting again.. Like MB says it isn't about losing weight it is about learning to eat right and still enjoy your food. To learn not live to eat. which i think at times is my theory.. Keep up the good work. patti nj, ipf 7'06, raynauds, scleroderma, PH 2'07> >> > Jack,> > Dr. Weil's website has alot of information on an anti-inflammatory diet. Here is a link to his food pyramid:> > http://www.drweil. com/drw/u/ ART02995/ Dr-Weil-Anti- Inflammatory- Food-Pyramid. html> > > > I realize that this may be controversial to some people.. I'm not saying anyone should make the same changes I have, just sharing what I've been working on diet wise. I feel very comfortable with this partly because I'm working with a nutritionist at Duke who is completely familiar with my medical situation and my history and more importantly I' m doing this with the blessing and encouragement of both my pulmonologist and my rheumatologist at Duke.> >  > > Beth in North Carolina> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositi s 11/08> >  > > "May you never take one single breath for granted"> > > > > > > > > > ____________ _________ _________ __> > From: Jack Marshall mrshlljck@ .> > To: Breathe-Support@ yahoogroups. com> > Sent: Tuesday, February 17, 2009 4:04:42 PM> > Subject: Re: Re: Support to Lose Weight> > > > > > MB, I've never heard of an anti-inflammatory diet, but I am very interested in one. Can you share info> > on what it consists of?> >  Jack> > 79/IPF - UIP/dx06/05 Maine > > > > > > > > > > ____________ _________ _________ __> > From: Beth mbmurtha (AT) yahoo (DOT) com>> > To: Breathe-Support@ yahoogroups. com> > Sent: Tuesday, February 17, 2009 2:35:19 PM> > Subject: Re: Re: Support to Lose Weight> > > > > > Sue,> > I struggle with the same issue that you've all been talking about. I need to lose around the same amount as you do in order to go any further with transplant. Fortunately I am still considered way to healthy (I find that somewhat amusing) to be considered for transplant, overweight or not. But I also realize that could change at any time. > > My nsip seems to have been caused by the dermatomyositis which means that theoretically controlling my auto-immune condition helps to prevent worsening of my lung condition. Can't count on that obviously. Who do you see at Duke? I see Lake on, he has told me that life expectancy with nsip (both fibrotic and cellular) varies tremendously from stats similar to IPF as you said to literally decades of stability. It may ultimately depend on what caused it. > > > > What I'm doing right now is radically different from anything else I've ever done. I've begun working with a nutritionist from the Duke Center for Living and have begun eating an 'anti-inflammation' diet. I'm not at all focusing on losing weight (though I am) it's more about choosing to eat foods that can help my body be as healthy as possible. I don't know how this will work for me over the long haul but I'm giving it a go cause what I've done up till now hasn't gotten me anything but aggravation.> > > > Beth in North Carolina> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositi s 11/08> >  > > "May you never take one single breath for granted"> > > > > > > > > > ____________ _________ _________ __> > From: Sue Dassel sdassel (AT) verizon (DOT) net>> > To: Breathe-Support@ yahoogroups. com> > Sent: Tuesday, February 17, 2009 10:17:40 AM> > Subject: Re: Support to Lose Weight> > > > > > Hi friends: I'd like to jump in here. I have always had a weight problem and have also been on Cellcept (3000 mg / day) and prednisone (now down to 5 mg) for the past 15 months. I gained about 25 lbs and now need to lose 100 lbs to be considered for a transplant at Duke. That 100 lbs might as well be 1000 lbs. I am looking into a lap band or bypass and would be approved from an ins. Standpoint, but before being considered Ihave to get an EKG, and a recent PFT, a psychologist eval and some other test. I am in the process of getting this info together. My pulmodoc at Duke has hesitantly said he would approve of this procedure for me. My local pulmodoc told me it's almost impossible to lose weight on prednisone and I don't want to go through a lap band procedure if I'm only going to lose a small amount of weight. The other thing he told me was that fibrotic NSIP is very close to IPF in terms of life expectancy.  My last PFT done> > here locally was not very good from the diffusion standpoint â€"only 19% of predictedâ€"but the lung volume and other tests were not bad at all.      Doc said there may be a variation in equipment from here to Duke so I guess my test in March will tell more.> > I am going back to Duke in March, and I have a feeling he is going to change the meds and probably up the prednisone. I am really in a quandary.> > I know part of my eating is psychological and the thought of a diet when dealing with this terminal disease is almost too much for me to handle. I don't want to feel deprived. It's not that I eat much in quantity because I feel terrible if I have overeaten, I just make the wrong choices so I don't feel deprived.> > There, I got it off my chest.. Any suggestions/ recommendations would be welcome.> > Sue D.> > 62 yr old, Fibrotic NSIP dx 9/07, VA> >  > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2009 Report Share Posted February 19, 2009 Caro I have eaten with many PF'ers and almost all have some problems with both the eating and the talking at the table. I am so aware of how prevalent it is because they have always seemed so amazed that I don't have a significant problem doing so. I've even had to pull my oximeter out and show a couple. So, it is quite the norm for eating and taking to lower your sats. > > > > > > Jack, > > > Dr. Weil's website has alot of information on an anti- > inflammatory diet. Here is a link to his food pyramid: > > > http://www.drweil. com/drw/u/ ART02995/ Dr-Weil-Anti- > Inflammatory- Food-Pyramid. html > > > > > > I realize that this may be controversial to some people.. I'm > not saying anyone should make the same changes I have, just sharing > what I've been working on diet wise. I feel very comfortable with > this partly because I'm working with a nutritionist at Duke who is > completely familiar with my medical situation and my history and > more importantly I' m doing this with the blessing and encouragement > of both my pulmonologist and my rheumatologist at Duke. > > >  > > > Beth in North Carolina > > > Moderator > > > Fibrotic NSIP 06/06 Dermatomyositi s 11/08 > > >  > > > " May you never take one single breath for granted " > > > > > > > > > > > > > > > ____________ _________ _________ __ > > > From: Jack Marshall mrshlljck@ . > > > To: Breathe-Support@ yahoogroups. com > > > Sent: Tuesday, February 17, 2009 4:04:42 PM > > > Subject: Re: Re: Support to Lose Weight > > > > > > > > > MB, I've never heard of an anti-inflammatory diet, but I am very > interested in one. Can you share info > > > on what it consists of? > > >  Jack > > > 79/IPF - UIP/dx06/05 Maine > > > > > > > > > > > > > > > ____________ _________ _________ __ > > > From: Beth mbmurtha (AT) yahoo (DOT) com> > > > To: Breathe-Support@ yahoogroups. com > > > Sent: Tuesday, February 17, 2009 2:35:19 PM > > > Subject: Re: Re: Support to Lose Weight > > > > > > > > > Sue, > > > I struggle with the same issue that you've all been > talking about. I need to lose around the same amount as you do in > order to go any further with transplant. Fortunately I am still > considered way to healthy (I find that somewhat amusing) to be > considered for transplant, overweight or not. But I also realize > that could change at any time. > > > My nsip seems to have been caused by the dermatomyositis which > means that theoretically controlling my auto-immune condition helps > to prevent worsening of my lung condition. Can't count on that > obviously. Who do you see at Duke? I see Lake on, he has told > me that life expectancy with nsip (both fibrotic and cellular) > varies tremendously from stats similar to IPF as you said to > literally decades of stability. It may ultimately depend on what > caused it. > > > > > > What I'm doing right now is radically different from anything > else I've ever done. I've begun working with a nutritionist from > the Duke Center for Living and have begun eating an 'anti- > inflammation' diet. I'm not at all focusing on losing weight > (though I am) it's more about choosing to eat foods that can help my > body be as healthy as possible. I don't know how this will work for > me over the long haul but I'm giving it a go cause what I've done up > till now hasn't gotten me anything but aggravation. > > > > > > Beth in North Carolina > > > Moderator > > > Fibrotic NSIP 06/06 Dermatomyositi s 11/08 > > >  > > > " May you never take one single breath for granted " > > > > > > > > > > > > > > > ____________ _________ _________ __ > > > From: Sue Dassel sdassel (AT) verizon (DOT) net> > > > To: Breathe-Support@ yahoogroups. com > > > Sent: Tuesday, February 17, 2009 10:17:40 AM > > > Subject: Re: Support to Lose Weight > > > > > > > > > Hi friends: I'd like to jump in here. I have always had a > weight problem and have also been on Cellcept (3000 mg / day) and > prednisone (now down to 5 mg) for the past 15 months. I gained > about 25 lbs and now need to lose 100 lbs to be considered for a > transplant at Duke. That 100 lbs might as well be 1000 lbs. I am > looking into a lap band or bypass and would be approved from an ins. > Standpoint, but before being considered Ihave to get an EKG, and a > recent PFT, a psychologist eval and some other test. I am in the > process of getting this info together. My pulmodoc at Duke has > hesitantly said he would approve of this procedure for me. My > local pulmodoc told me it's almost impossible to lose weight on > prednisone and I don't want to go through a lap band procedure if > I'm only going to lose a small amount of weight. The other thing he > told me was that fibrotic NSIP is very close to IPF in terms of life > expectancy.  My last PFT done > > > here locally was not very good from the diffusion standpoint > †" only 19% of predicted†" but the lung volume and other tests were > not bad at all.      Doc said there may be a variation in > equipment from here to Duke so I guess my test in March will tell > more. > > > I am going back to Duke in March, and I have a feeling he is > going to change the meds and probably up the prednisone. I am > really in a quandary. > > > I know part of my eating is psychological and the thought of a > diet when dealing with this terminal disease is almost too much for > me to handle. I don't want to feel deprived. It's not that I eat > much in quantity because I feel terrible if I have overeaten, I just > make the wrong choices so I don't feel deprived. > > > There, I got it off my chest.. Any suggestions/ > recommendations would be welcome. > > > Sue D. > > > 62 yr old, Fibrotic NSIP dx 9/07, VA > > >  > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2009 Report Share Posted February 19, 2009 Caro I have eaten with many PF'ers and almost all have some problems with both the eating and the talking at the table. I am so aware of how prevalent it is because they have always seemed so amazed that I don't have a significant problem doing so. I've even had to pull my oximeter out and show a couple. So, it is quite the norm for eating and taking to lower your sats. > > > > > > Jack, > > > Dr. Weil's website has alot of information on an anti- > inflammatory diet. Here is a link to his food pyramid: > > > http://www.drweil. com/drw/u/ ART02995/ Dr-Weil-Anti- > Inflammatory- Food-Pyramid. html > > > > > > I realize that this may be controversial to some people.. I'm > not saying anyone should make the same changes I have, just sharing > what I've been working on diet wise. I feel very comfortable with > this partly because I'm working with a nutritionist at Duke who is > completely familiar with my medical situation and my history and > more importantly I' m doing this with the blessing and encouragement > of both my pulmonologist and my rheumatologist at Duke. > > >  > > > Beth in North Carolina > > > Moderator > > > Fibrotic NSIP 06/06 Dermatomyositi s 11/08 > > >  > > > " May you never take one single breath for granted " > > > > > > > > > > > > > > > ____________ _________ _________ __ > > > From: Jack Marshall mrshlljck@ . > > > To: Breathe-Support@ yahoogroups. com > > > Sent: Tuesday, February 17, 2009 4:04:42 PM > > > Subject: Re: Re: Support to Lose Weight > > > > > > > > > MB, I've never heard of an anti-inflammatory diet, but I am very > interested in one. Can you share info > > > on what it consists of? > > >  Jack > > > 79/IPF - UIP/dx06/05 Maine > > > > > > > > > > > > > > > ____________ _________ _________ __ > > > From: Beth mbmurtha (AT) yahoo (DOT) com> > > > To: Breathe-Support@ yahoogroups. com > > > Sent: Tuesday, February 17, 2009 2:35:19 PM > > > Subject: Re: Re: Support to Lose Weight > > > > > > > > > Sue, > > > I struggle with the same issue that you've all been > talking about. I need to lose around the same amount as you do in > order to go any further with transplant. Fortunately I am still > considered way to healthy (I find that somewhat amusing) to be > considered for transplant, overweight or not. But I also realize > that could change at any time. > > > My nsip seems to have been caused by the dermatomyositis which > means that theoretically controlling my auto-immune condition helps > to prevent worsening of my lung condition. Can't count on that > obviously. Who do you see at Duke? I see Lake on, he has told > me that life expectancy with nsip (both fibrotic and cellular) > varies tremendously from stats similar to IPF as you said to > literally decades of stability. It may ultimately depend on what > caused it. > > > > > > What I'm doing right now is radically different from anything > else I've ever done. I've begun working with a nutritionist from > the Duke Center for Living and have begun eating an 'anti- > inflammation' diet. I'm not at all focusing on losing weight > (though I am) it's more about choosing to eat foods that can help my > body be as healthy as possible. I don't know how this will work for > me over the long haul but I'm giving it a go cause what I've done up > till now hasn't gotten me anything but aggravation. > > > > > > Beth in North Carolina > > > Moderator > > > Fibrotic NSIP 06/06 Dermatomyositi s 11/08 > > >  > > > " May you never take one single breath for granted " > > > > > > > > > > > > > > > ____________ _________ _________ __ > > > From: Sue Dassel sdassel (AT) verizon (DOT) net> > > > To: Breathe-Support@ yahoogroups. com > > > Sent: Tuesday, February 17, 2009 10:17:40 AM > > > Subject: Re: Support to Lose Weight > > > > > > > > > Hi friends: I'd like to jump in here. I have always had a > weight problem and have also been on Cellcept (3000 mg / day) and > prednisone (now down to 5 mg) for the past 15 months. I gained > about 25 lbs and now need to lose 100 lbs to be considered for a > transplant at Duke. That 100 lbs might as well be 1000 lbs. I am > looking into a lap band or bypass and would be approved from an ins. > Standpoint, but before being considered Ihave to get an EKG, and a > recent PFT, a psychologist eval and some other test. I am in the > process of getting this info together. My pulmodoc at Duke has > hesitantly said he would approve of this procedure for me. My > local pulmodoc told me it's almost impossible to lose weight on > prednisone and I don't want to go through a lap band procedure if > I'm only going to lose a small amount of weight. The other thing he > told me was that fibrotic NSIP is very close to IPF in terms of life > expectancy.  My last PFT done > > > here locally was not very good from the diffusion standpoint > †" only 19% of predicted†" but the lung volume and other tests were > not bad at all.      Doc said there may be a variation in > equipment from here to Duke so I guess my test in March will tell > more. > > > I am going back to Duke in March, and I have a feeling he is > going to change the meds and probably up the prednisone. I am > really in a quandary. > > > I know part of my eating is psychological and the thought of a > diet when dealing with this terminal disease is almost too much for > me to handle. I don't want to feel deprived. It's not that I eat > much in quantity because I feel terrible if I have overeaten, I just > make the wrong choices so I don't feel deprived. > > > There, I got it off my chest.. Any suggestions/ > recommendations would be welcome. > > > Sue D. > > > 62 yr old, Fibrotic NSIP dx 9/07, VA > > >  > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2009 Report Share Posted February 19, 2009 Caro I have eaten with many PF'ers and almost all have some problems with both the eating and the talking at the table. I am so aware of how prevalent it is because they have always seemed so amazed that I don't have a significant problem doing so. I've even had to pull my oximeter out and show a couple. So, it is quite the norm for eating and taking to lower your sats. > > > > > > Jack, > > > Dr. Weil's website has alot of information on an anti- > inflammatory diet. Here is a link to his food pyramid: > > > http://www.drweil. com/drw/u/ ART02995/ Dr-Weil-Anti- > Inflammatory- Food-Pyramid. html > > > > > > I realize that this may be controversial to some people.. I'm > not saying anyone should make the same changes I have, just sharing > what I've been working on diet wise. I feel very comfortable with > this partly because I'm working with a nutritionist at Duke who is > completely familiar with my medical situation and my history and > more importantly I' m doing this with the blessing and encouragement > of both my pulmonologist and my rheumatologist at Duke. > > >  > > > Beth in North Carolina > > > Moderator > > > Fibrotic NSIP 06/06 Dermatomyositi s 11/08 > > >  > > > " May you never take one single breath for granted " > > > > > > > > > > > > > > > ____________ _________ _________ __ > > > From: Jack Marshall mrshlljck@ . > > > To: Breathe-Support@ yahoogroups. com > > > Sent: Tuesday, February 17, 2009 4:04:42 PM > > > Subject: Re: Re: Support to Lose Weight > > > > > > > > > MB, I've never heard of an anti-inflammatory diet, but I am very > interested in one. Can you share info > > > on what it consists of? > > >  Jack > > > 79/IPF - UIP/dx06/05 Maine > > > > > > > > > > > > > > > ____________ _________ _________ __ > > > From: Beth mbmurtha (AT) yahoo (DOT) com> > > > To: Breathe-Support@ yahoogroups. com > > > Sent: Tuesday, February 17, 2009 2:35:19 PM > > > Subject: Re: Re: Support to Lose Weight > > > > > > > > > Sue, > > > I struggle with the same issue that you've all been > talking about. I need to lose around the same amount as you do in > order to go any further with transplant. Fortunately I am still > considered way to healthy (I find that somewhat amusing) to be > considered for transplant, overweight or not. But I also realize > that could change at any time. > > > My nsip seems to have been caused by the dermatomyositis which > means that theoretically controlling my auto-immune condition helps > to prevent worsening of my lung condition. Can't count on that > obviously. Who do you see at Duke? I see Lake on, he has told > me that life expectancy with nsip (both fibrotic and cellular) > varies tremendously from stats similar to IPF as you said to > literally decades of stability. It may ultimately depend on what > caused it. > > > > > > What I'm doing right now is radically different from anything > else I've ever done. I've begun working with a nutritionist from > the Duke Center for Living and have begun eating an 'anti- > inflammation' diet. I'm not at all focusing on losing weight > (though I am) it's more about choosing to eat foods that can help my > body be as healthy as possible. I don't know how this will work for > me over the long haul but I'm giving it a go cause what I've done up > till now hasn't gotten me anything but aggravation. > > > > > > Beth in North Carolina > > > Moderator > > > Fibrotic NSIP 06/06 Dermatomyositi s 11/08 > > >  > > > " May you never take one single breath for granted " > > > > > > > > > > > > > > > ____________ _________ _________ __ > > > From: Sue Dassel sdassel (AT) verizon (DOT) net> > > > To: Breathe-Support@ yahoogroups. com > > > Sent: Tuesday, February 17, 2009 10:17:40 AM > > > Subject: Re: Support to Lose Weight > > > > > > > > > Hi friends: I'd like to jump in here. I have always had a > weight problem and have also been on Cellcept (3000 mg / day) and > prednisone (now down to 5 mg) for the past 15 months. I gained > about 25 lbs and now need to lose 100 lbs to be considered for a > transplant at Duke. That 100 lbs might as well be 1000 lbs. I am > looking into a lap band or bypass and would be approved from an ins. > Standpoint, but before being considered Ihave to get an EKG, and a > recent PFT, a psychologist eval and some other test. I am in the > process of getting this info together. My pulmodoc at Duke has > hesitantly said he would approve of this procedure for me. My > local pulmodoc told me it's almost impossible to lose weight on > prednisone and I don't want to go through a lap band procedure if > I'm only going to lose a small amount of weight. The other thing he > told me was that fibrotic NSIP is very close to IPF in terms of life > expectancy.  My last PFT done > > > here locally was not very good from the diffusion standpoint > †" only 19% of predicted†" but the lung volume and other tests were > not bad at all.      Doc said there may be a variation in > equipment from here to Duke so I guess my test in March will tell > more. > > > I am going back to Duke in March, and I have a feeling he is > going to change the meds and probably up the prednisone. I am > really in a quandary. > > > I know part of my eating is psychological and the thought of a > diet when dealing with this terminal disease is almost too much for > me to handle. I don't want to feel deprived. It's not that I eat > much in quantity because I feel terrible if I have overeaten, I just > make the wrong choices so I don't feel deprived. > > > There, I got it off my chest.. Any suggestions/ > recommendations would be welcome. > > > Sue D. > > > 62 yr old, Fibrotic NSIP dx 9/07, VA > > >  > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2009 Report Share Posted February 19, 2009 LOL so is walking and talking.. LOL you know I have to try both.. Love & Prayers, PeggyFlorida, IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." CaroI have eaten with many PF'ers and almost all have some problems withboth the eating and the talking at the table. I am so aware of howprevalent it is because they have always seemed so amazed that I don'thave a significant problem doing so. I've even had to pull my oximeterout and show a couple. So, it is quite the norm for eating and taking tolower your sats.> > >> > > Jack,> > > Dr. Weil's website has alot of information on ananti-> inflammatory diet. Here is a link to his food pyramid:> > > http://www.drweil. com/drw/u/ ART02995/ Dr-Weil-Anti-> Inflammatory- Food-Pyramid. html> > >> > > I realize that this may be controversial to some people..I'm> not saying anyone should make the same changes I have, justsharing> what I've been working on diet wise. I feel very comfortablewith> this partly because I'm working with a nutritionist at Duke whois> completely familiar with my medical situation and my history and> more importantly I' m doing this with the blessing andencouragement> of both my pulmonologist and my rheumatologist at Duke.> > > ÂÂ> > > Beth in North Carolina> > > Moderator> > > Fibrotic NSIP 06/06 Dermatomyositi s 11/08> > > ÂÂ> > > "May you never take one single breath for granted"> > >> > >> > >> > >> > > ____________ _________ _________ __> > > From: Jack Marshall mrshlljck@ .> > > To: Breathe-Support@ yahoogroups. com> > > Sent: Tuesday, February 17, 2009 4:04:42 PM> > > Subject: Re: Re: Support to Lose Weight> > >> > >> > > MB, I've never heard of an anti-inflammatory diet, but I am very> interested in one. Can you share info> > > on what it consists of?> > >  Jack> > > 79/IPF - UIP/dx06/05 Maine> > >> > >> > >> > >> > > ____________ _________ _________ __> > > From: Beth mbmurtha (AT) yahoo (DOT) com>> > > To: Breathe-Support@ yahoogroups. com> > > Sent: Tuesday, February 17, 2009 2:35:19 PM> > > Subject: Re: Re: Support to Lose Weight> > >> > >> > > Sue,> > > I struggle with the same issue that you've all been> talking about. I need to lose around the same amount as you doin> order to go any further with transplant. Fortunately I am still> considered way to healthy (I find that somewhat amusing) to be> considered for transplant, overweight or not. But I alsorealize> that could change at any time.> > > My nsip seems to have been caused by the dermatomyositiswhich> means that theoretically controlling my auto-immune condition helps> to prevent worsening of my lung condition. Can't counton that> obviously. Who do you see at Duke? I see Lake on, he hastold> me that life expectancy with nsip (both fibrotic and cellular)> varies tremendously from stats similar to IPF as you said to> literally decades of stability. It may ultimately depend onwhat> caused it.> > >> > > What I'm doing right now is radically different from anything> else I've ever done. I've begun working with anutritionist from> the Duke Center for Living and have begun eating an 'anti-> inflammation' diet. I'm not at all focusing on losing weight> (though I am) it's more about choosing to eat foods that can help my> body be as healthy as possible. I don't know how this will work for> me over the long haul but I'm giving it a go cause what I've done up> till now hasn't gotten me anything but aggravation.> > >> > > Beth in North Carolina> > > Moderator> > > Fibrotic NSIP 06/06 Dermatomyositi s 11/08> > > ÂÂ> > > "May you never take one single breath for granted"> > >> > >> > >> > >> > > ____________ _________ _________ __> > > From: Sue Dassel sdassel (AT) verizon (DOT) net>> > > To: Breathe-Support@ yahoogroups. com> > > Sent: Tuesday, February 17, 2009 10:17:40 AM> > > Subject: Re: Support to Lose Weight> > >> > >> > > Hi friends: I'd like to jump in here. I havealways had a> weight problem and have also been on Cellcept (3000 mg / day) and> prednisone (now down to 5 mg) for the past 15 months. I gained> about 25 lbs and now need to lose 100 lbs to be considered for a> transplant at Duke. That 100 lbs might as well be 1000lbs. I am> looking into a lap band or bypass and would be approved from an ins.> Standpoint, but before being considered Ihave to get an EKG, and a> recent PFT, a psychologist eval and some other test. I am inthe> process of getting this info together. My pulmodoc at Duke has> hesitantly said he would approve of this procedure for me. My> local pulmodoc told me it's almost impossible to lose weight on> prednisone and I don't want to go through a lap band procedure if> I'm only going to lose a small amount of weight. The other thing he> told me was that fibrotic NSIP is very close to IPF in terms of life> expectancy.  My last PFT done> > > here locally was not very good from the diffusion standpoint> â€"only 19% of predictedâ€"but the lung volume and othertests were> not bad at all.      Docsaid there may be a variation in> equipment from here to Duke so I guess my test in March will tell> more.> > > I am going back to Duke in March, and I have a feeling he is> going to change the meds and probably up the prednisone. I am> really in a quandary.> > > I know part of my eating is psychological and the thought of a> diet when dealing with this terminal disease is almost too much for> me to handle. I don't want to feel deprived. It's notthat I eat> much in quantity because I feel terrible if I have overeaten, I just> make the wrong choices so I don't feel deprived.> > > There, I got it off my chest.. Any suggestions/> recommendations would be welcome.> > > Sue D.> > > 62 yr old, Fibrotic NSIP dx 9/07, VA> > > ÂÂ> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2009 Report Share Posted February 19, 2009 Hi Everyone! I had therapy for eating when I had my trach. Ever since, I have been transformed into a slow eater of food. I always when last when eating with my family. My opinion is that if you get SOB when eating, turn up the O2. Toodles! Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl> > >> > > Jack,> > > Dr. Weil's website has alot of information on an anti-> inflammatory diet. Here is a link to his food pyramid:> > > http://www.drweil. com/drw/u/ ART02995/ Dr-Weil-Anti- > Inflammatory- Food-Pyramid. html> > > > > > I realize that this may be controversial to some people.. I'm > not saying anyone should make the same changes I have, just sharing > what I've been working on diet wise. I feel very comfortable with > this partly because I'm working with a nutritionist at Duke who is > completely familiar with my medical situation and my history and > more importantly I' m doing this with the blessing and encouragement > of both my pulmonologist and my rheumatologist at Duke.> > >  > > > Beth in North Carolina> > > Moderator> > > Fibrotic NSIP 06/06 Dermatomyositi s 11/08> > >  > > > "May you never take one single breath for granted"> > > > > > > > > > > > > > > ____________ _________ _________ __> > > From: Jack Marshall mrshlljck@ .> > > To: Breathe-Support@ yahoogroups. com> > > Sent: Tuesday, February 17, 2009 4:04:42 PM> > > Subject: Re: Re: Support to Lose Weight> > > > > > > > > MB, I've never heard of an anti-inflammatory diet, but I am very > interested in one. Can you share info> > > on what it consists of?> > >  Jack> > > 79/IPF - UIP/dx06/05 Maine > > > > > > > > > > > > > > > ____________ _________ _________ __> > > From: Beth mbmurtha (AT) yahoo (DOT) com>> > > To: Breathe-Support@ yahoogroups. com> > > Sent: Tuesday, February 17, 2009 2:35:19 PM> > > Subject: Re: Re: Support to Lose Weight> > > > > > > > > Sue,> > > I struggle with the same issue that you've all been > talking about. I need to lose around the same amount as you do in > order to go any further with transplant. Fortunately I am still > considered way to healthy (I find that somewhat amusing) to be > considered for transplant, overweight or not. But I also realize > that could change at any time. > > > My nsip seems to have been caused by the dermatomyositis which > means that theoretically controlling my auto-immune condition helps > to prevent worsening of my lung condition. Can't count on that > obviously. Who do you see at Duke? I see Lake on, he has told > me that life expectancy with nsip (both fibrotic and cellular) > varies tremendously from stats similar to IPF as you said to > literally decades of stability. It may ultimately depend on what > caused it. > > > > > > What I'm doing right now is radically different from anything > else I've ever done. I've begun working with a nutritionist from > the Duke Center for Living and have begun eating an 'anti-> inflammation' diet. I'm not at all focusing on losing weight > (though I am) it's more about choosing to eat foods that can help my > body be as healthy as possible. I don't know how this will work for > me over the long haul but I'm giving it a go cause what I've done up > till now hasn't gotten me anything but aggravation.> > > > > > Beth in North Carolina> > > Moderator> > > Fibrotic NSIP 06/06 Dermatomyositi s 11/08> > >  > > > "May you never take one single breath for granted"> > > > > > > > > > > > > > > ____________ _________ _________ __> > > From: Sue Dassel sdassel (AT) verizon (DOT) net>> > > To: Breathe-Support@ yahoogroups. com> > > Sent: Tuesday, February 17, 2009 10:17:40 AM> > > Subject: Re: Support to Lose Weight> > > > > > > > > Hi friends: I'd like to jump in here. I have always had a > weight problem and have also been on Cellcept (3000 mg / day) and > prednisone (now down to 5 mg) for the past 15 months. I gained > about 25 lbs and now need to lose 100 lbs to be considered for a > transplant at Duke. That 100 lbs might as well be 1000 lbs. I am > looking into a lap band or bypass and would be approved from an ins. > Standpoint, but before being considered Ihave to get an EKG, and a > recent PFT, a psychologist eval and some other test. I am in the > process of getting this info together. My pulmodoc at Duke has > hesitantly said he would approve of this procedure for me. My > local pulmodoc told me it's almost impossible to lose weight on > prednisone and I don't want to go through a lap band procedure if > I'm only going to lose a small amount of weight. The other thing he > told me was that fibrotic NSIP is very close to IPF in terms of life > expectancy.  My last PFT done> > > here locally was not very good from the diffusion standpoint > â€"only 19% of predictedâ€"but the lung volume and other tests were > not bad at all.      Doc said there may be a variation in > equipment from here to Duke so I guess my test in March will tell > more.> > > I am going back to Duke in March, and I have a feeling he is > going to change the meds and probably up the prednisone. I am > really in a quandary.> > > I know part of my eating is psychological and the thought of a > diet when dealing with this terminal disease is almost too much for > me to handle. I don't want to feel deprived. It's not that I eat > much in quantity because I feel terrible if I have overeaten, I just > make the wrong choices so I don't feel deprived.> > > There, I got it off my chest.. Any suggestions/ > recommendations would be welcome.> > > Sue D.> > > 62 yr old, Fibrotic NSIP dx 9/07, VA> > >  > > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2009 Report Share Posted February 19, 2009 i don't know about the eating, but definitely the talking -- makes me breathless Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 www.transplantfund.org--- Subject: Re: weight supportTo: Breathe-Support Date: Thursday, February 19, 2009, 10:16 AM CaroI have eaten with many PF'ers and almost all have some problems withboth the eating and the talking at the table. I am so aware of howprevalent it is because they have always seemed so amazed that I don'thave a significant problem doing so. I've even had to pull my oximeterout and show a couple. So, it is quite the norm for eating and taking tolower your sats.> > >> > > Jack,> > > Dr. Weil's website has alot of information on ananti-> inflammatory diet. Here is a link to his food pyramid:> > > http://www.drweil. com/drw/u/ ART02995/ Dr-Weil-Anti-> Inflammatory- Food-Pyramid. html> > >> > > I realize that this may be controversial to some people..I'm> not saying anyone should make the same changes I have, justsharing> what I've been working on diet wise. I feel very comfortablewith> this partly because I'm working with a nutritionist at Duke whois> completely familiar with my medical situation and my history and> more importantly I' m doing this with the blessing andencouragement> of both my pulmonologist and my rheumatologist at Duke.> > > ÂÂ> > > Beth in North Carolina> > > Moderator> > > Fibrotic NSIP 06/06 Dermatomyositi s 11/08> > > ÂÂ> > > "May you never take one single breath for granted"> > >> > >> > >> > >> > > ____________ _________ _________ __> > > From: Jack Marshall mrshlljck@ .> > > To: Breathe-Support@ yahoogroups. com> > > Sent: Tuesday, February 17, 2009 4:04:42 PM> > > Subject: Re: Re: Support to Lose Weight> > >> > >> > > MB, I've never heard of an anti-inflammatory diet, but I am very> interested in one. Can you share info> > > on what it consists of?> > >  Jack> > > 79/IPF - UIP/dx06/05 Maine> > >> > >> > >> > >> > > ____________ _________ _________ __> > > From: Beth mbmurtha (AT) yahoo (DOT) com>> > > To: Breathe-Support@ yahoogroups. com> > > Sent: Tuesday, February 17, 2009 2:35:19 PM> > > Subject: Re: Re: Support to Lose Weight> > >> > >> > > Sue,> > > I struggle with the same issue that you've all been> talking about. I need to lose around the same amount as you doin> order to go any further with transplant. Fortunately I am still> considered way to healthy (I find that somewhat amusing) to be> considered for transplant, overweight or not. But I alsorealize> that could change at any time.> > > My nsip seems to have been caused by the dermatomyositiswhich> means that theoretically controlling my auto-immune condition helps> to prevent worsening of my lung condition. Can't counton that> obviously. Who do you see at Duke? I see Lake on, he hastold> me that life expectancy with nsip (both fibrotic and cellular)> varies tremendously from stats similar to IPF as you said to> literally decades of stability. It may ultimately depend onwhat> caused it.> > >> > > What I'm doing right now is radically different from anything> else I've ever done. I've begun working with anutritionist from> the Duke Center for Living and have begun eating an 'anti-> inflammation' diet. I'm not at all focusing on losing weight> (though I am) it's more about choosing to eat foods that can help my> body be as healthy as possible. I don't know how this will work for> me over the long haul but I'm giving it a go cause what I've done up> till now hasn't gotten me anything but aggravation.> > >> > > Beth in North Carolina> > > Moderator> > > Fibrotic NSIP 06/06 Dermatomyositi s 11/08> > > ÂÂ> > > "May you never take one single breath for granted"> > >> > >> > >> > >> > > ____________ _________ _________ __> > > From: Sue Dassel sdassel (AT) verizon (DOT) net>> > > To: Breathe-Support@ yahoogroups. com> > > Sent: Tuesday, February 17, 2009 10:17:40 AM> > > Subject: Re: Support to Lose Weight> > >> > >> > > Hi friends: I'd like to jump in here. I havealways had a> weight problem and have also been on Cellcept (3000 mg / day) and> prednisone (now down to 5 mg) for the past 15 months. I gained> about 25 lbs and now need to lose 100 lbs to be considered for a> transplant at Duke. That 100 lbs might as well be 1000lbs. I am> looking into a lap band or bypass and would be approved from an ins.> Standpoint, but before being considered Ihave to get an EKG, and a> recent PFT, a psychologist eval and some other test. I am inthe> process of getting this info together. My pulmodoc at Duke has> hesitantly said he would approve of this procedure for me. My> local pulmodoc told me it's almost impossible to lose weight on> prednisone and I don't want to go through a lap band procedure if> I'm only going to lose a small amount of weight. The other thing he> told me was that fibrotic NSIP is very close to IPF in terms of life> expectancy.  My last PFT done> > > here locally was not very good from the diffusion standpoint> â€"only 19% of predictedâ€"but the lung volume and othertests were> not bad at all.      Docsaid there may be a variation in> equipment from here to Duke so I guess my test in March will tell> more.> > > I am going back to Duke in March, and I have a feeling he is> going to change the meds and probably up the prednisone. I am> really in a quandary.> > > I know part of my eating is psychological and the thought of a> diet when dealing with this terminal disease is almost too much for> me to handle. I don't want to feel deprived. It's notthat I eat> much in quantity because I feel terrible if I have overeaten, I just> make the wrong choices so I don't feel deprived.> > > There, I got it off my chest.. Any suggestions/> recommendations would be welcome.> > > Sue D.> > > 62 yr old, Fibrotic NSIP dx 9/07, VA> > > ÂÂ> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2009 Report Share Posted February 19, 2009 i don't know about the eating, but definitely the talking -- makes me breathless Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 www.transplantfund.org--- Subject: Re: weight supportTo: Breathe-Support Date: Thursday, February 19, 2009, 10:16 AM CaroI have eaten with many PF'ers and almost all have some problems withboth the eating and the talking at the table. I am so aware of howprevalent it is because they have always seemed so amazed that I don'thave a significant problem doing so. I've even had to pull my oximeterout and show a couple. So, it is quite the norm for eating and taking tolower your sats.> > >> > > Jack,> > > Dr. Weil's website has alot of information on ananti-> inflammatory diet. Here is a link to his food pyramid:> > > http://www.drweil. com/drw/u/ ART02995/ Dr-Weil-Anti-> Inflammatory- Food-Pyramid. html> > >> > > I realize that this may be controversial to some people..I'm> not saying anyone should make the same changes I have, justsharing> what I've been working on diet wise. I feel very comfortablewith> this partly because I'm working with a nutritionist at Duke whois> completely familiar with my medical situation and my history and> more importantly I' m doing this with the blessing andencouragement> of both my pulmonologist and my rheumatologist at Duke.> > > ÂÂ> > > Beth in North Carolina> > > Moderator> > > Fibrotic NSIP 06/06 Dermatomyositi s 11/08> > > ÂÂ> > > "May you never take one single breath for granted"> > >> > >> > >> > >> > > ____________ _________ _________ __> > > From: Jack Marshall mrshlljck@ .> > > To: Breathe-Support@ yahoogroups. com> > > Sent: Tuesday, February 17, 2009 4:04:42 PM> > > Subject: Re: Re: Support to Lose Weight> > >> > >> > > MB, I've never heard of an anti-inflammatory diet, but I am very> interested in one. Can you share info> > > on what it consists of?> > >  Jack> > > 79/IPF - UIP/dx06/05 Maine> > >> > >> > >> > >> > > ____________ _________ _________ __> > > From: Beth mbmurtha (AT) yahoo (DOT) com>> > > To: Breathe-Support@ yahoogroups. com> > > Sent: Tuesday, February 17, 2009 2:35:19 PM> > > Subject: Re: Re: Support to Lose Weight> > >> > >> > > Sue,> > > I struggle with the same issue that you've all been> talking about. I need to lose around the same amount as you doin> order to go any further with transplant. Fortunately I am still> considered way to healthy (I find that somewhat amusing) to be> considered for transplant, overweight or not. But I alsorealize> that could change at any time.> > > My nsip seems to have been caused by the dermatomyositiswhich> means that theoretically controlling my auto-immune condition helps> to prevent worsening of my lung condition. Can't counton that> obviously. Who do you see at Duke? I see Lake on, he hastold> me that life expectancy with nsip (both fibrotic and cellular)> varies tremendously from stats similar to IPF as you said to> literally decades of stability. It may ultimately depend onwhat> caused it.> > >> > > What I'm doing right now is radically different from anything> else I've ever done. I've begun working with anutritionist from> the Duke Center for Living and have begun eating an 'anti-> inflammation' diet. I'm not at all focusing on losing weight> (though I am) it's more about choosing to eat foods that can help my> body be as healthy as possible. I don't know how this will work for> me over the long haul but I'm giving it a go cause what I've done up> till now hasn't gotten me anything but aggravation.> > >> > > Beth in North Carolina> > > Moderator> > > Fibrotic NSIP 06/06 Dermatomyositi s 11/08> > > ÂÂ> > > "May you never take one single breath for granted"> > >> > >> > >> > >> > > ____________ _________ _________ __> > > From: Sue Dassel sdassel (AT) verizon (DOT) net>> > > To: Breathe-Support@ yahoogroups. com> > > Sent: Tuesday, February 17, 2009 10:17:40 AM> > > Subject: Re: Support to Lose Weight> > >> > >> > > Hi friends: I'd like to jump in here. I havealways had a> weight problem and have also been on Cellcept (3000 mg / day) and> prednisone (now down to 5 mg) for the past 15 months. I gained> about 25 lbs and now need to lose 100 lbs to be considered for a> transplant at Duke. That 100 lbs might as well be 1000lbs. I am> looking into a lap band or bypass and would be approved from an ins.> Standpoint, but before being considered Ihave to get an EKG, and a> recent PFT, a psychologist eval and some other test. I am inthe> process of getting this info together. My pulmodoc at Duke has> hesitantly said he would approve of this procedure for me. My> local pulmodoc told me it's almost impossible to lose weight on> prednisone and I don't want to go through a lap band procedure if> I'm only going to lose a small amount of weight. The other thing he> told me was that fibrotic NSIP is very close to IPF in terms of life> expectancy.  My last PFT done> > > here locally was not very good from the diffusion standpoint> â€"only 19% of predictedâ€"but the lung volume and othertests were> not bad at all.      Docsaid there may be a variation in> equipment from here to Duke so I guess my test in March will tell> more.> > > I am going back to Duke in March, and I have a feeling he is> going to change the meds and probably up the prednisone. I am> really in a quandary.> > > I know part of my eating is psychological and the thought of a> diet when dealing with this terminal disease is almost too much for> me to handle. I don't want to feel deprived. It's notthat I eat> much in quantity because I feel terrible if I have overeaten, I just> make the wrong choices so I don't feel deprived.> > > There, I got it off my chest.. Any suggestions/> recommendations would be welcome.> > > Sue D.> > > 62 yr old, Fibrotic NSIP dx 9/07, VA> > > ÂÂ> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2009 Report Share Posted February 19, 2009 i don't know about the eating, but definitely the talking -- makes me breathless Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 www.transplantfund.org--- Subject: Re: weight supportTo: Breathe-Support Date: Thursday, February 19, 2009, 10:16 AM CaroI have eaten with many PF'ers and almost all have some problems withboth the eating and the talking at the table. I am so aware of howprevalent it is because they have always seemed so amazed that I don'thave a significant problem doing so. I've even had to pull my oximeterout and show a couple. So, it is quite the norm for eating and taking tolower your sats.> > >> > > Jack,> > > Dr. Weil's website has alot of information on ananti-> inflammatory diet. Here is a link to his food pyramid:> > > http://www.drweil. com/drw/u/ ART02995/ Dr-Weil-Anti-> Inflammatory- Food-Pyramid. html> > >> > > I realize that this may be controversial to some people..I'm> not saying anyone should make the same changes I have, justsharing> what I've been working on diet wise. I feel very comfortablewith> this partly because I'm working with a nutritionist at Duke whois> completely familiar with my medical situation and my history and> more importantly I' m doing this with the blessing andencouragement> of both my pulmonologist and my rheumatologist at Duke.> > > ÂÂ> > > Beth in North Carolina> > > Moderator> > > Fibrotic NSIP 06/06 Dermatomyositi s 11/08> > > ÂÂ> > > "May you never take one single breath for granted"> > >> > >> > >> > >> > > ____________ _________ _________ __> > > From: Jack Marshall mrshlljck@ .> > > To: Breathe-Support@ yahoogroups. com> > > Sent: Tuesday, February 17, 2009 4:04:42 PM> > > Subject: Re: Re: Support to Lose Weight> > >> > >> > > MB, I've never heard of an anti-inflammatory diet, but I am very> interested in one. Can you share info> > > on what it consists of?> > >  Jack> > > 79/IPF - UIP/dx06/05 Maine> > >> > >> > >> > >> > > ____________ _________ _________ __> > > From: Beth mbmurtha (AT) yahoo (DOT) com>> > > To: Breathe-Support@ yahoogroups. com> > > Sent: Tuesday, February 17, 2009 2:35:19 PM> > > Subject: Re: Re: Support to Lose Weight> > >> > >> > > Sue,> > > I struggle with the same issue that you've all been> talking about. I need to lose around the same amount as you doin> order to go any further with transplant. Fortunately I am still> considered way to healthy (I find that somewhat amusing) to be> considered for transplant, overweight or not. But I alsorealize> that could change at any time.> > > My nsip seems to have been caused by the dermatomyositiswhich> means that theoretically controlling my auto-immune condition helps> to prevent worsening of my lung condition. Can't counton that> obviously. Who do you see at Duke? I see Lake on, he hastold> me that life expectancy with nsip (both fibrotic and cellular)> varies tremendously from stats similar to IPF as you said to> literally decades of stability. It may ultimately depend onwhat> caused it.> > >> > > What I'm doing right now is radically different from anything> else I've ever done. I've begun working with anutritionist from> the Duke Center for Living and have begun eating an 'anti-> inflammation' diet. I'm not at all focusing on losing weight> (though I am) it's more about choosing to eat foods that can help my> body be as healthy as possible. I don't know how this will work for> me over the long haul but I'm giving it a go cause what I've done up> till now hasn't gotten me anything but aggravation.> > >> > > Beth in North Carolina> > > Moderator> > > Fibrotic NSIP 06/06 Dermatomyositi s 11/08> > > ÂÂ> > > "May you never take one single breath for granted"> > >> > >> > >> > >> > > ____________ _________ _________ __> > > From: Sue Dassel sdassel (AT) verizon (DOT) net>> > > To: Breathe-Support@ yahoogroups. com> > > Sent: Tuesday, February 17, 2009 10:17:40 AM> > > Subject: Re: Support to Lose Weight> > >> > >> > > Hi friends: I'd like to jump in here. I havealways had a> weight problem and have also been on Cellcept (3000 mg / day) and> prednisone (now down to 5 mg) for the past 15 months. I gained> about 25 lbs and now need to lose 100 lbs to be considered for a> transplant at Duke. That 100 lbs might as well be 1000lbs. I am> looking into a lap band or bypass and would be approved from an ins.> Standpoint, but before being considered Ihave to get an EKG, and a> recent PFT, a psychologist eval and some other test. I am inthe> process of getting this info together. My pulmodoc at Duke has> hesitantly said he would approve of this procedure for me. My> local pulmodoc told me it's almost impossible to lose weight on> prednisone and I don't want to go through a lap band procedure if> I'm only going to lose a small amount of weight. The other thing he> told me was that fibrotic NSIP is very close to IPF in terms of life> expectancy.  My last PFT done> > > here locally was not very good from the diffusion standpoint> â€"only 19% of predictedâ€"but the lung volume and othertests were> not bad at all.      Docsaid there may be a variation in> equipment from here to Duke so I guess my test in March will tell> more.> > > I am going back to Duke in March, and I have a feeling he is> going to change the meds and probably up the prednisone. I am> really in a quandary.> > > I know part of my eating is psychological and the thought of a> diet when dealing with this terminal disease is almost too much for> me to handle. I don't want to feel deprived. It's notthat I eat> much in quantity because I feel terrible if I have overeaten, I just> make the wrong choices so I don't feel deprived.> > > There, I got it off my chest.. Any suggestions/> recommendations would be welcome.> > > Sue D.> > > 62 yr old, Fibrotic NSIP dx 9/07, VA> > > ÂÂ> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2009 Report Share Posted February 19, 2009 Caro, Eating uses a lot of O2. Yes, I get SOB while eating and have to use the O2 while eating. After eating the SOB continues unless I've been on the O2 the entire time. There have been occasions when even with the O2 I am uncomfortable after eating and cannot get up right away to clean away the dishes etc. Often, things like that have to wait a while. Z fibriotic NSIP/05 Z 65, fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Vinca Minor-periwinkle is my flower Carolyn Wade wrote: Since we are on the subject of eating, I was meaning to ask if anyone else has problems breathing when they eat? I have just noticed this happening to me over the last couple of months and it is really frustrating. Even if I eat small bites and eat slow, I still get short of breath. I am going back to Birmingham to UAB the first week of March and am definitely going to ask for some helpful hints. Was just curious if this is one of the things that is "supposed" to happen with UIP. Caro ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 Mississippi From: friend.patti <friend.patti (AT) yahoo (DOT) com> To: Breathe-Support Sent: Wednesday, February 18, 2009 8:15:12 PM Subject: weight support margaret so glad you had a great day; send the receipe for soup.. mine wasn't such a good day, felt bloated all day and of course like you said short of breath when over eat. but it was an emotional eating frenzy.. plan to try and eat healthy starting again.. Like MB says it isn't about losing weight it is about learning to eat right and still enjoy your food. To learn not live to eat. which i think at times is my theory.. Keep up the good work. patti nj, ipf 7'06, raynauds, scleroderma, PH 2'07 > > > > Jack, > > Dr. Weil's website has alot of information on an anti- inflammatory diet. Here is a link to his food pyramid: > > http://www.drweil. com/drw/u/ ART02995/ Dr-Weil-Anti- Inflammatory- Food-Pyramid. html > > > > I realize that this may be controversial to some people.. I'm not saying anyone should make the same changes I have, just sharing what I've been working on diet wise. I feel very comfortable with this partly because I'm working with a nutritionist at Duke who is completely familiar with my medical situation and my history and more importantly I' m doing this with the blessing and encouragement of both my pulmonologist and my rheumatologist at Duke. > >  > > Beth in North Carolina > > Moderator > > Fibrotic NSIP 06/06 Dermatomyositi s 11/08 > >  > > "May you never take one single breath for granted" > > > > > > > > > > ____________ _________ _________ __ > > From: Jack Marshall mrshlljck@ . > > To: Breathe-Support@ yahoogroups. com > > Sent: Tuesday, February 17, 2009 4:04:42 PM > > Subject: Re: Re: Support to Lose Weight > > > > > > MB, I've never heard of an anti-inflammatory diet, but I am very interested in one. Can you share info > > on what it consists of? > >  Jack > > 79/IPF - UIP/dx06/05 Maine > > > > > > > > > > ____________ _________ _________ __ > > From: Beth mbmurtha (AT) yahoo (DOT) com> > > To: Breathe-Support@ yahoogroups. com > > Sent: Tuesday, February 17, 2009 2:35:19 PM > > Subject: Re: Re: Support to Lose Weight > > > > > > Sue, > > I struggle with the same issue that you've all been talking about. I need to lose around the same amount as you do in order to go any further with transplant. Fortunately I am still considered way to healthy (I find that somewhat amusing) to be considered for transplant, overweight or not. But I also realize that could change at any time. > > My nsip seems to have been caused by the dermatomyositis which means that theoretically controlling my auto-immune condition helps to prevent worsening of my lung condition. Can't count on that obviously. Who do you see at Duke? I see Lake on, he has told me that life expectancy with nsip (both fibrotic and cellular) varies tremendously from stats similar to IPF as you said to literally decades of stability. It may ultimately depend on what caused it. > > > > What I'm doing right now is radically different from anything else I've ever done. I've begun working with a nutritionist from the Duke Center for Living and have begun eating an 'anti- inflammation' diet. I'm not at all focusing on losing weight (though I am) it's more about choosing to eat foods that can help my body be as healthy as possible. I don't know how this will work for me over the long haul but I'm giving it a go cause what I've done up till now hasn't gotten me anything but aggravation. > > > > Beth in North Carolina > > Moderator > > Fibrotic NSIP 06/06 Dermatomyositi s 11/08 > >  > > "May you never take one single breath for granted" > > > > > > > > > > ____________ _________ _________ __ > > From: Sue Dassel sdassel (AT) verizon (DOT) net> > > To: Breathe-Support@ yahoogroups. com > > Sent: Tuesday, February 17, 2009 10:17:40 AM > > Subject: Re: Support to Lose Weight > > > > > > Hi friends: I'd like to jump in here. I have always had a weight problem and have also been on Cellcept (3000 mg / day) and prednisone (now down to 5 mg) for the past 15 months. I gained about 25 lbs and now need to lose 100 lbs to be considered for a transplant at Duke. That 100 lbs might as well be 1000 lbs. I am looking into a lap band or bypass and would be approved from an ins. Standpoint, but before being considered Ihave to get an EKG, and a recent PFT, a psychologist eval and some other test. I am in the process of getting this info together. My pulmodoc at Duke has hesitantly said he would approve of this procedure for me. My local pulmodoc told me it's almost impossible to lose weight on prednisone and I don't want to go through a lap band procedure if I'm only going to lose a small amount of weight. The other thing he told me was that fibrotic NSIP is very close to IPF in terms of life expectancy.  My last PFT done > > here locally was not very good from the diffusion standpoint â€"only 19% of predictedâ€"but the lung volume and other tests were not bad at all.      Doc said there may be a variation in equipment from here to Duke so I guess my test in March will tell more. > > I am going back to Duke in March, and I have a feeling he is going to change the meds and probably up the prednisone. I am really in a quandary. > > I know part of my eating is psychological and the thought of a diet when dealing with this terminal disease is almost too much for me to handle. I don't want to feel deprived. It's not that I eat much in quantity because I feel terrible if I have overeaten, I just make the wrong choices so I don't feel deprived. > > There, I got it off my chest.. Any suggestions/ recommendations would be welcome. > > Sue D. > > 62 yr old, Fibrotic NSIP dx 9/07, VA > >  > > > No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.0.237 / Virus Database: 270.11.0/1959 - Release Date: 02/18/09 20:55:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2009 Report Share Posted February 19, 2009 Caro, Eating uses a lot of O2. Yes, I get SOB while eating and have to use the O2 while eating. After eating the SOB continues unless I've been on the O2 the entire time. There have been occasions when even with the O2 I am uncomfortable after eating and cannot get up right away to clean away the dishes etc. Often, things like that have to wait a while. Z fibriotic NSIP/05 Z 65, fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Vinca Minor-periwinkle is my flower Carolyn Wade wrote: Since we are on the subject of eating, I was meaning to ask if anyone else has problems breathing when they eat? I have just noticed this happening to me over the last couple of months and it is really frustrating. Even if I eat small bites and eat slow, I still get short of breath. I am going back to Birmingham to UAB the first week of March and am definitely going to ask for some helpful hints. Was just curious if this is one of the things that is "supposed" to happen with UIP. Caro ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 Mississippi From: friend.patti <friend.patti (AT) yahoo (DOT) com> To: Breathe-Support Sent: Wednesday, February 18, 2009 8:15:12 PM Subject: weight support margaret so glad you had a great day; send the receipe for soup.. mine wasn't such a good day, felt bloated all day and of course like you said short of breath when over eat. but it was an emotional eating frenzy.. plan to try and eat healthy starting again.. Like MB says it isn't about losing weight it is about learning to eat right and still enjoy your food. To learn not live to eat. which i think at times is my theory.. Keep up the good work. patti nj, ipf 7'06, raynauds, scleroderma, PH 2'07 > > > > Jack, > > Dr. Weil's website has alot of information on an anti- inflammatory diet. Here is a link to his food pyramid: > > http://www.drweil. com/drw/u/ ART02995/ Dr-Weil-Anti- Inflammatory- Food-Pyramid. html > > > > I realize that this may be controversial to some people.. I'm not saying anyone should make the same changes I have, just sharing what I've been working on diet wise. I feel very comfortable with this partly because I'm working with a nutritionist at Duke who is completely familiar with my medical situation and my history and more importantly I' m doing this with the blessing and encouragement of both my pulmonologist and my rheumatologist at Duke. > >  > > Beth in North Carolina > > Moderator > > Fibrotic NSIP 06/06 Dermatomyositi s 11/08 > >  > > "May you never take one single breath for granted" > > > > > > > > > > ____________ _________ _________ __ > > From: Jack Marshall mrshlljck@ . > > To: Breathe-Support@ yahoogroups. com > > Sent: Tuesday, February 17, 2009 4:04:42 PM > > Subject: Re: Re: Support to Lose Weight > > > > > > MB, I've never heard of an anti-inflammatory diet, but I am very interested in one. Can you share info > > on what it consists of? > >  Jack > > 79/IPF - UIP/dx06/05 Maine > > > > > > > > > > ____________ _________ _________ __ > > From: Beth mbmurtha (AT) yahoo (DOT) com> > > To: Breathe-Support@ yahoogroups. com > > Sent: Tuesday, February 17, 2009 2:35:19 PM > > Subject: Re: Re: Support to Lose Weight > > > > > > Sue, > > I struggle with the same issue that you've all been talking about. I need to lose around the same amount as you do in order to go any further with transplant. Fortunately I am still considered way to healthy (I find that somewhat amusing) to be considered for transplant, overweight or not. But I also realize that could change at any time. > > My nsip seems to have been caused by the dermatomyositis which means that theoretically controlling my auto-immune condition helps to prevent worsening of my lung condition. Can't count on that obviously. Who do you see at Duke? I see Lake on, he has told me that life expectancy with nsip (both fibrotic and cellular) varies tremendously from stats similar to IPF as you said to literally decades of stability. It may ultimately depend on what caused it. > > > > What I'm doing right now is radically different from anything else I've ever done. I've begun working with a nutritionist from the Duke Center for Living and have begun eating an 'anti- inflammation' diet. I'm not at all focusing on losing weight (though I am) it's more about choosing to eat foods that can help my body be as healthy as possible. I don't know how this will work for me over the long haul but I'm giving it a go cause what I've done up till now hasn't gotten me anything but aggravation. > > > > Beth in North Carolina > > Moderator > > Fibrotic NSIP 06/06 Dermatomyositi s 11/08 > >  > > "May you never take one single breath for granted" > > > > > > > > > > ____________ _________ _________ __ > > From: Sue Dassel sdassel (AT) verizon (DOT) net> > > To: Breathe-Support@ yahoogroups. com > > Sent: Tuesday, February 17, 2009 10:17:40 AM > > Subject: Re: Support to Lose Weight > > > > > > Hi friends: I'd like to jump in here. I have always had a weight problem and have also been on Cellcept (3000 mg / day) and prednisone (now down to 5 mg) for the past 15 months. I gained about 25 lbs and now need to lose 100 lbs to be considered for a transplant at Duke. That 100 lbs might as well be 1000 lbs. I am looking into a lap band or bypass and would be approved from an ins. Standpoint, but before being considered Ihave to get an EKG, and a recent PFT, a psychologist eval and some other test. I am in the process of getting this info together. My pulmodoc at Duke has hesitantly said he would approve of this procedure for me. My local pulmodoc told me it's almost impossible to lose weight on prednisone and I don't want to go through a lap band procedure if I'm only going to lose a small amount of weight. The other thing he told me was that fibrotic NSIP is very close to IPF in terms of life expectancy.  My last PFT done > > here locally was not very good from the diffusion standpoint â€"only 19% of predictedâ€"but the lung volume and other tests were not bad at all.      Doc said there may be a variation in equipment from here to Duke so I guess my test in March will tell more. > > I am going back to Duke in March, and I have a feeling he is going to change the meds and probably up the prednisone. I am really in a quandary. > > I know part of my eating is psychological and the thought of a diet when dealing with this terminal disease is almost too much for me to handle. I don't want to feel deprived. It's not that I eat much in quantity because I feel terrible if I have overeaten, I just make the wrong choices so I don't feel deprived. > > There, I got it off my chest.. Any suggestions/ recommendations would be welcome. > > Sue D. > > 62 yr old, Fibrotic NSIP dx 9/07, VA > >  > > > No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.0.237 / Virus Database: 270.11.0/1959 - Release Date: 02/18/09 20:55:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2009 Report Share Posted February 19, 2009 I didn't think about the talking part, but now that you mention it, I do get short of breath sometimes if I try and get in a hurry and talk too fast. I guess I'm really getting afraid that I getting closer and closer to needing O2 and that really scares me. CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08Mississippi To: Breathe-Support Sent: Thursday, February 19, 2009 9:16:54 AMSubject: Re: weight support CaroI have eaten with many PF'ers and almost all have some problems withboth the eating and the talking at the table. I am so aware of howprevalent it is because they have always seemed so amazed that I don'thave a significant problem doing so. I've even had to pull my oximeterout and show a couple. So, it is quite the norm for eating and taking tolower your sats.> > >> > > Jack,> > > Dr. Weil's website has alot of information on ananti-> inflammatory diet. Here is a link to his food pyramid:> > > http://www.drweil. com/drw/u/ ART02995/ Dr-Weil-Anti-> Inflammatory- Food-Pyramid. html> > >> > > I realize that this may be controversial to some people..I'm> not saying anyone should make the same changes I have, justsharing> what I've been working on diet wise. I feel very comfortablewith> this partly because I'm working with a nutritionist at Duke whois> completely familiar with my medical situation and my history and> more importantly I' m doing this with the blessing andencouragement> of both my pulmonologist and my rheumatologist at Duke.> > > ÂÂ> > > Beth in North Carolina> > > Moderator> > > Fibrotic NSIP 06/06 Dermatomyositi s 11/08> > > ÂÂ> > > "May you never take one single breath for granted"> > >> > >> > >> > >> > > ____________ _________ _________ __> > > From: Jack Marshall mrshlljck@ .> > > To: Breathe-Support@ yahoogroups. com> > > Sent: Tuesday, February 17, 2009 4:04:42 PM> > > Subject: Re: Re: Support to Lose Weight> > >> > >> > > MB, I've never heard of an anti-inflammatory diet, but I am very> interested in one. Can you share info> > > on what it consists of?> > >  Jack> > > 79/IPF - UIP/dx06/05 Maine> > >> > >> > >> > >> > > ____________ _________ _________ __> > > From: Beth mbmurtha (AT) yahoo (DOT) com>> > > To: Breathe-Support@ yahoogroups. com> > > Sent: Tuesday, February 17, 2009 2:35:19 PM> > > Subject: Re: Re: Support to Lose Weight> > >> > >> > > Sue,> > > I struggle with the same issue that you've all been> talking about. I need to lose around the same amount as you doin> order to go any further with transplant. Fortunately I am still> considered way to healthy (I find that somewhat amusing) to be> considered for transplant, overweight or not. But I alsorealize> that could change at any time.> > > My nsip seems to have been caused by the dermatomyositiswhich> means that theoretically controlling my auto-immune condition helps> to prevent worsening of my lung condition. Can't counton that> obviously. Who do you see at Duke? I see Lake on, he hastold> me that life expectancy with nsip (both fibrotic and cellular)> varies tremendously from stats similar to IPF as you said to> literally decades of stability. It may ultimately depend onwhat> caused it.> > >> > > What I'm doing right now is radically different from anything> else I've ever done. I've begun working with anutritionist from> the Duke Center for Living and have begun eating an 'anti-> inflammation' diet. I'm not at all focusing on losing weight> (though I am) it's more about choosing to eat foods that can help my> body be as healthy as possible. I don't know how this will work for> me over the long haul but I'm giving it a go cause what I've done up> till now hasn't gotten me anything but aggravation.> > >> > > Beth in North Carolina> > > Moderator> > > Fibrotic NSIP 06/06 Dermatomyositi s 11/08> > > ÂÂ> > > "May you never take one single breath for granted"> > >> > >> > >> > >> > > ____________ _________ _________ __> > > From: Sue Dassel sdassel (AT) verizon (DOT) net>> > > To: Breathe-Support@ yahoogroups. com> > > Sent: Tuesday, February 17, 2009 10:17:40 AM> > > Subject: Re: Support to Lose Weight> > >> > >> > > Hi friends: I'd like to jump in here. I havealways had a> weight problem and have also been on Cellcept (3000 mg / day) and> prednisone (now down to 5 mg) for the past 15 months. I gained> about 25 lbs and now need to lose 100 lbs to be considered for a> transplant at Duke. That 100 lbs might as well be 1000lbs. I am> looking into a lap band or bypass and would be approved from an ins.> Standpoint, but before being considered Ihave to get an EKG, and a> recent PFT, a psychologist eval and some other test. I am inthe> process of getting this info together. My pulmodoc at Duke has> hesitantly said he would approve of this procedure for me. My> local pulmodoc told me it's almost impossible to lose weight on> prednisone and I don't want to go through a lap band procedure if> I'm only going to lose a small amount of weight. The other thing he> told me was that fibrotic NSIP is very close to IPF in terms of life> expectancy.  My last PFT done> > > here locally was not very good from the diffusion standpoint> â€"only 19% of predictedâ€"but the lung volume and othertests were> not bad at all.      Docsaid there may be a variation in> equipment from here to Duke so I guess my test in March will tell> more.> > > I am going back to Duke in March, and I have a feeling he is> going to change the meds and probably up the prednisone. I am> really in a quandary.> > > I know part of my eating is psychological and the thought of a> diet when dealing with this terminal disease is almost too much for> me to handle. I don't want to feel deprived. It's notthat I eat> much in quantity because I feel terrible if I have overeaten, I just> make the wrong choices so I don't feel deprived.> > > There, I got it off my chest.. Any suggestions/> recommendations would be welcome.> > > Sue D.> > > 62 yr old, Fibrotic NSIP dx 9/07, VA> > > ÂÂ> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2009 Report Share Posted February 19, 2009 I didn't think about the talking part, but now that you mention it, I do get short of breath sometimes if I try and get in a hurry and talk too fast. I guess I'm really getting afraid that I getting closer and closer to needing O2 and that really scares me. CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08Mississippi To: Breathe-Support Sent: Thursday, February 19, 2009 9:16:54 AMSubject: Re: weight support CaroI have eaten with many PF'ers and almost all have some problems withboth the eating and the talking at the table. I am so aware of howprevalent it is because they have always seemed so amazed that I don'thave a significant problem doing so. I've even had to pull my oximeterout and show a couple. So, it is quite the norm for eating and taking tolower your sats.> > >> > > Jack,> > > Dr. Weil's website has alot of information on ananti-> inflammatory diet. Here is a link to his food pyramid:> > > http://www.drweil. com/drw/u/ ART02995/ Dr-Weil-Anti-> Inflammatory- Food-Pyramid. html> > >> > > I realize that this may be controversial to some people..I'm> not saying anyone should make the same changes I have, justsharing> what I've been working on diet wise. I feel very comfortablewith> this partly because I'm working with a nutritionist at Duke whois> completely familiar with my medical situation and my history and> more importantly I' m doing this with the blessing andencouragement> of both my pulmonologist and my rheumatologist at Duke.> > > ÂÂ> > > Beth in North Carolina> > > Moderator> > > Fibrotic NSIP 06/06 Dermatomyositi s 11/08> > > ÂÂ> > > "May you never take one single breath for granted"> > >> > >> > >> > >> > > ____________ _________ _________ __> > > From: Jack Marshall mrshlljck@ .> > > To: Breathe-Support@ yahoogroups. com> > > Sent: Tuesday, February 17, 2009 4:04:42 PM> > > Subject: Re: Re: Support to Lose Weight> > >> > >> > > MB, I've never heard of an anti-inflammatory diet, but I am very> interested in one. Can you share info> > > on what it consists of?> > >  Jack> > > 79/IPF - UIP/dx06/05 Maine> > >> > >> > >> > >> > > ____________ _________ _________ __> > > From: Beth mbmurtha (AT) yahoo (DOT) com>> > > To: Breathe-Support@ yahoogroups. com> > > Sent: Tuesday, February 17, 2009 2:35:19 PM> > > Subject: Re: Re: Support to Lose Weight> > >> > >> > > Sue,> > > I struggle with the same issue that you've all been> talking about. I need to lose around the same amount as you doin> order to go any further with transplant. Fortunately I am still> considered way to healthy (I find that somewhat amusing) to be> considered for transplant, overweight or not. But I alsorealize> that could change at any time.> > > My nsip seems to have been caused by the dermatomyositiswhich> means that theoretically controlling my auto-immune condition helps> to prevent worsening of my lung condition. Can't counton that> obviously. Who do you see at Duke? I see Lake on, he hastold> me that life expectancy with nsip (both fibrotic and cellular)> varies tremendously from stats similar to IPF as you said to> literally decades of stability. It may ultimately depend onwhat> caused it.> > >> > > What I'm doing right now is radically different from anything> else I've ever done. I've begun working with anutritionist from> the Duke Center for Living and have begun eating an 'anti-> inflammation' diet. I'm not at all focusing on losing weight> (though I am) it's more about choosing to eat foods that can help my> body be as healthy as possible. I don't know how this will work for> me over the long haul but I'm giving it a go cause what I've done up> till now hasn't gotten me anything but aggravation.> > >> > > Beth in North Carolina> > > Moderator> > > Fibrotic NSIP 06/06 Dermatomyositi s 11/08> > > ÂÂ> > > "May you never take one single breath for granted"> > >> > >> > >> > >> > > ____________ _________ _________ __> > > From: Sue Dassel sdassel (AT) verizon (DOT) net>> > > To: Breathe-Support@ yahoogroups. com> > > Sent: Tuesday, February 17, 2009 10:17:40 AM> > > Subject: Re: Support to Lose Weight> > >> > >> > > Hi friends: I'd like to jump in here. I havealways had a> weight problem and have also been on Cellcept (3000 mg / day) and> prednisone (now down to 5 mg) for the past 15 months. I gained> about 25 lbs and now need to lose 100 lbs to be considered for a> transplant at Duke. That 100 lbs might as well be 1000lbs. I am> looking into a lap band or bypass and would be approved from an ins.> Standpoint, but before being considered Ihave to get an EKG, and a> recent PFT, a psychologist eval and some other test. I am inthe> process of getting this info together. My pulmodoc at Duke has> hesitantly said he would approve of this procedure for me. My> local pulmodoc told me it's almost impossible to lose weight on> prednisone and I don't want to go through a lap band procedure if> I'm only going to lose a small amount of weight. The other thing he> told me was that fibrotic NSIP is very close to IPF in terms of life> expectancy.  My last PFT done> > > here locally was not very good from the diffusion standpoint> â€"only 19% of predictedâ€"but the lung volume and othertests were> not bad at all.      Docsaid there may be a variation in> equipment from here to Duke so I guess my test in March will tell> more.> > > I am going back to Duke in March, and I have a feeling he is> going to change the meds and probably up the prednisone. I am> really in a quandary.> > > I know part of my eating is psychological and the thought of a> diet when dealing with this terminal disease is almost too much for> me to handle. I don't want to feel deprived. It's notthat I eat> much in quantity because I feel terrible if I have overeaten, I just> make the wrong choices so I don't feel deprived.> > > There, I got it off my chest.. Any suggestions/> recommendations would be welcome.> > > Sue D.> > > 62 yr old, Fibrotic NSIP dx 9/07, VA> > > ÂÂ> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2009 Report Share Posted February 19, 2009 I didn't think about the talking part, but now that you mention it, I do get short of breath sometimes if I try and get in a hurry and talk too fast. I guess I'm really getting afraid that I getting closer and closer to needing O2 and that really scares me. CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08Mississippi To: Breathe-Support Sent: Thursday, February 19, 2009 9:16:54 AMSubject: Re: weight support CaroI have eaten with many PF'ers and almost all have some problems withboth the eating and the talking at the table. I am so aware of howprevalent it is because they have always seemed so amazed that I don'thave a significant problem doing so. I've even had to pull my oximeterout and show a couple. So, it is quite the norm for eating and taking tolower your sats.> > >> > > Jack,> > > Dr. Weil's website has alot of information on ananti-> inflammatory diet. Here is a link to his food pyramid:> > > http://www.drweil. com/drw/u/ ART02995/ Dr-Weil-Anti-> Inflammatory- Food-Pyramid. html> > >> > > I realize that this may be controversial to some people..I'm> not saying anyone should make the same changes I have, justsharing> what I've been working on diet wise. I feel very comfortablewith> this partly because I'm working with a nutritionist at Duke whois> completely familiar with my medical situation and my history and> more importantly I' m doing this with the blessing andencouragement> of both my pulmonologist and my rheumatologist at Duke.> > > ÂÂ> > > Beth in North Carolina> > > Moderator> > > Fibrotic NSIP 06/06 Dermatomyositi s 11/08> > > ÂÂ> > > "May you never take one single breath for granted"> > >> > >> > >> > >> > > ____________ _________ _________ __> > > From: Jack Marshall mrshlljck@ .> > > To: Breathe-Support@ yahoogroups. com> > > Sent: Tuesday, February 17, 2009 4:04:42 PM> > > Subject: Re: Re: Support to Lose Weight> > >> > >> > > MB, I've never heard of an anti-inflammatory diet, but I am very> interested in one. Can you share info> > > on what it consists of?> > >  Jack> > > 79/IPF - UIP/dx06/05 Maine> > >> > >> > >> > >> > > ____________ _________ _________ __> > > From: Beth mbmurtha (AT) yahoo (DOT) com>> > > To: Breathe-Support@ yahoogroups. com> > > Sent: Tuesday, February 17, 2009 2:35:19 PM> > > Subject: Re: Re: Support to Lose Weight> > >> > >> > > Sue,> > > I struggle with the same issue that you've all been> talking about. I need to lose around the same amount as you doin> order to go any further with transplant. Fortunately I am still> considered way to healthy (I find that somewhat amusing) to be> considered for transplant, overweight or not. But I alsorealize> that could change at any time.> > > My nsip seems to have been caused by the dermatomyositiswhich> means that theoretically controlling my auto-immune condition helps> to prevent worsening of my lung condition. Can't counton that> obviously. Who do you see at Duke? I see Lake on, he hastold> me that life expectancy with nsip (both fibrotic and cellular)> varies tremendously from stats similar to IPF as you said to> literally decades of stability. It may ultimately depend onwhat> caused it.> > >> > > What I'm doing right now is radically different from anything> else I've ever done. I've begun working with anutritionist from> the Duke Center for Living and have begun eating an 'anti-> inflammation' diet. I'm not at all focusing on losing weight> (though I am) it's more about choosing to eat foods that can help my> body be as healthy as possible. I don't know how this will work for> me over the long haul but I'm giving it a go cause what I've done up> till now hasn't gotten me anything but aggravation.> > >> > > Beth in North Carolina> > > Moderator> > > Fibrotic NSIP 06/06 Dermatomyositi s 11/08> > > ÂÂ> > > "May you never take one single breath for granted"> > >> > >> > >> > >> > > ____________ _________ _________ __> > > From: Sue Dassel sdassel (AT) verizon (DOT) net>> > > To: Breathe-Support@ yahoogroups. com> > > Sent: Tuesday, February 17, 2009 10:17:40 AM> > > Subject: Re: Support to Lose Weight> > >> > >> > > Hi friends: I'd like to jump in here. I havealways had a> weight problem and have also been on Cellcept (3000 mg / day) and> prednisone (now down to 5 mg) for the past 15 months. I gained> about 25 lbs and now need to lose 100 lbs to be considered for a> transplant at Duke. That 100 lbs might as well be 1000lbs. I am> looking into a lap band or bypass and would be approved from an ins.> Standpoint, but before being considered Ihave to get an EKG, and a> recent PFT, a psychologist eval and some other test. I am inthe> process of getting this info together. My pulmodoc at Duke has> hesitantly said he would approve of this procedure for me. My> local pulmodoc told me it's almost impossible to lose weight on> prednisone and I don't want to go through a lap band procedure if> I'm only going to lose a small amount of weight. The other thing he> told me was that fibrotic NSIP is very close to IPF in terms of life> expectancy.  My last PFT done> > > here locally was not very good from the diffusion standpoint> â€"only 19% of predictedâ€"but the lung volume and othertests were> not bad at all.      Docsaid there may be a variation in> equipment from here to Duke so I guess my test in March will tell> more.> > > I am going back to Duke in March, and I have a feeling he is> going to change the meds and probably up the prednisone. I am> really in a quandary.> > > I know part of my eating is psychological and the thought of a> diet when dealing with this terminal disease is almost too much for> me to handle. I don't want to feel deprived. It's notthat I eat> much in quantity because I feel terrible if I have overeaten, I just> make the wrong choices so I don't feel deprived.> > > There, I got it off my chest.. Any suggestions/> recommendations would be welcome.> > > Sue D.> > > 62 yr old, Fibrotic NSIP dx 9/07, VA> > > ÂÂ> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2009 Report Share Posted February 19, 2009 Thanks . I am just finding more and more that I get SOB doing things that even 6 months ago I could do and it didn't bother me, like vacuuming the floor, or climbing a flight of stairs with a bag of groceries. Some days I struggle to have enough breath to eat and just give me and throw it in the trash. My pulmo wanted to put me on O2 with exertion last visit (last month) but he agreed to trial me on Ventolin inhaler with exertion first and go back in April and let him know how it goes. Guess I haven't really been using the inhaler like I should. I had better crack down on it this next month or he will definitely say O2 and I really don't think I'm quite ready for that yet. CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08Mississippi To: Breathe-Support Sent: Thursday, February 19, 2009 3:13:16 PMSubject: Re: weight support Caro, Eating uses a lot of O2. Yes, I get SOB while eating and have to use the O2while eating. After eating the SOB continues unless I've been on the O2 the entire time.There have been occasions when even with the O2 I am uncomfortable after eating and cannotget up right away to clean away the dishes etc. Often, things like that have to wait a while. Z 65, fibriotic NSIP/o5/PA And “mild†PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion†Bob Marley Vinca Minor-periwinkle is my flower Carolyn Wade wrote: Since we are on the subject of eating, I was meaning to ask if anyone else has problems breathing when they eat? I have just noticed this happening to me over the last couple of months and it is really frustrating. Even if I eat small bites and eat slow, I still get short of breath. I am going back to Birmingham to UAB the first week of March and am definitely going to ask for some helpful hints. Was just curious if this is one of the things that is "supposed" to happen with UIP. CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08Mississippi From: friend.patti <friend.patti@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Wednesday, February 18, 2009 8:15:12 PMSubject: weight support margaretso glad you had a great day; send the receipe for soup.. mine wasn't such a good day, felt bloated all day and of course like you said short of breath when over eat. but it was an emotional eating frenzy.. plan to try and eat healthy starting again.. Like MB says it isn't about losing weight it is about learning to eat right and still enjoy your food. To learn not live to eat. which i think at times is my theory.. Keep up the good work. patti nj, ipf 7'06, raynauds, scleroderma, PH 2'07> >> > Jack,> > Dr. Weil's website has alot of information on an anti-inflammatory diet. Here is a link to his food pyramid:> > http://www.drweil. com/drw/u/ ART02995/ Dr-Weil-Anti- Inflammatory- Food-Pyramid. html> > > > I realize that this may be controversial to some people.. I'm not saying anyone should make the same changes I have, just sharing what I've been working on diet wise. I feel very comfortable with this partly because I'm working with a nutritionist at Duke who is completely familiar with my medical situation and my history and more importantly I' m doing this with the blessing and encouragement of both my pulmonologist and my rheumatologist at Duke.> >  > > Beth in North Carolina> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositi s 11/08> >  > > "May you never take one single breath for granted"> > > > > > > > > > ____________ _________ _________ __> > From: Jack Marshall mrshlljck@ .> > To: Breathe-Support@ yahoogroups. com> > Sent: Tuesday, February 17, 2009 4:04:42 PM> > Subject: Re: Re: Support to Lose Weight> > > > > > MB, I've never heard of an anti-inflammatory diet, but I am very interested in one. Can you share info> > on what it consists of?> >  Jack> > 79/IPF - UIP/dx06/05 Maine > > > > > > > > > > ____________ _________ _________ __> > From: Beth mbmurtha (AT) yahoo (DOT) com>> > To: Breathe-Support@ yahoogroups. com> > Sent: Tuesday, February 17, 2009 2:35:19 PM> > Subject: Re: Re: Support to Lose Weight> > > > > > Sue,> > I struggle with the same issue that you've all been talking about. I need to lose around the same amount as you do in order to go any further with transplant. Fortunately I am still considered way to healthy (I find that somewhat amusing) to be considered for transplant, overweight or not. But I also realize that could change at any time. > > My nsip seems to have been caused by the dermatomyositis which means that theoretically controlling my auto-immune condition helps to prevent worsening of my lung condition. Can't count on that obviously. Who do you see at Duke? I see Lake on, he has told me that life expectancy with nsip (both fibrotic and cellular) varies tremendously from stats similar to IPF as you said to literally decades of stability. It may ultimately depend on what caused it. > > > > What I'm doing right now is radically different from anything else I've ever done. I've begun working with a nutritionist from the Duke Center for Living and have begun eating an 'anti-inflammation' diet. I'm not at all focusing on losing weight (though I am) it's more about choosing to eat foods that can help my body be as healthy as possible. I don't know how this will work for me over the long haul but I'm giving it a go cause what I've done up till now hasn't gotten me anything but aggravation.> > > > Beth in North Carolina> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositi s 11/08> >  > > "May you never take one single breath for granted"> > > > > > > > > > ____________ _________ _________ __> > From: Sue Dassel sdassel (AT) verizon (DOT) net>> > To: Breathe-Support@ yahoogroups. com> > Sent: Tuesday, February 17, 2009 10:17:40 AM> > Subject: Re: Support to Lose Weight> > > > > > Hi friends: I'd like to jump in here. I have always had a weight problem and have also been on Cellcept (3000 mg / day) and prednisone (now down to 5 mg) for the past 15 months. I gained about 25 lbs and now need to lose 100 lbs to be considered for a transplant at Duke. That 100 lbs might as well be 1000 lbs. I am looking into a lap band or bypass and would be approved from an ins. Standpoint, but before being considered Ihave to get an EKG, and a recent PFT, a psychologist eval and some other test. I am in the process of getting this info together. My pulmodoc at Duke has hesitantly said he would approve of this procedure for me. My local pulmodoc told me it's almost impossible to lose weight on prednisone and I don't want to go through a lap band procedure if I'm only going to lose a small amount of weight. The other thing he told me was that fibrotic NSIP is very close to IPF in terms of life expectancy.  My last PFT done> > here locally was not very good from the diffusion standpoint â€"only 19% of predictedâ€"but the lung volume and other tests were not bad at all.      Doc said there may be a variation in equipment from here to Duke so I guess my test in March will tell more.> > I am going back to Duke in March, and I have a feeling he is going to change the meds and probably up the prednisone. I am really in a quandary.> > I know part of my eating is psychological and the thought of a diet when dealing with this terminal disease is almost too much for me to handle. I don't want to feel deprived. It's not that I eat much in quantity because I feel terrible if I have overeaten, I just make the wrong choices so I don't feel deprived.> > There, I got it off my chest.. Any suggestions/ recommendations would be welcome.> > Sue D.> > 62 yr old, Fibrotic NSIP dx 9/07, VA> >  > >> No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.0.237 / Virus Database: 270.11.0/1959 - Release Date: 02/18/09 20:55:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2009 Report Share Posted February 19, 2009 Caro, I get very short of breath while eating. I've also had a wierd syptoms that my husband HATES. Some times my lungs will spontaneoulsy suck in air very loud and hard. It's happened several times when I've had food in my mouth. The food went right down my wind pipe. IT can be very scary. I try to be mindfull of taking smaller bites and trying to slow down some. If i start getting SOB I stop eating until i'm not feeling so winded. 33 FL IPF dx 1/06 > > > > > > Jack, > > > Dr. Weil's website has alot of information on an anti- > inflammatory diet. Here is a link to his food pyramid: > > > http://www.drweil. com/drw/u/ ART02995/ Dr-Weil-Anti- > Inflammatory- Food-Pyramid. html > > > > > > I realize that this may be controversial to some people.. I'm > not saying anyone should make the same changes I have, just sharing > what I've been working on diet wise. I feel very comfortable with > this partly because I'm working with a nutritionist at Duke who is > completely familiar with my medical situation and my history and > more importantly I' m doing this with the blessing and encouragement > of both my pulmonologist and my rheumatologist at Duke. > > >  > > > Beth in North Carolina > > > Moderator > > > Fibrotic NSIP 06/06 Dermatomyositi s 11/08 > > >  > > > " May you never take one single breath for granted " > > > > > > > > > > > > > > > ____________ _________ _________ __ > > > From: Jack Marshall mrshlljck@ . > > > To: Breathe-Support@ yahoogroups. com > > > Sent: Tuesday, February 17, 2009 4:04:42 PM > > > Subject: Re: Re: Support to Lose Weight > > > > > > > > > MB, I've never heard of an anti-inflammatory diet, but I am very > interested in one. Can you share info > > > on what it consists of? > > >  Jack > > > 79/IPF - UIP/dx06/05 Maine > > > > > > > > > > > > > > > ____________ _________ _________ __ > > > From: Beth mbmurtha (AT) yahoo (DOT) com> > > > To: Breathe-Support@ yahoogroups. com > > > Sent: Tuesday, February 17, 2009 2:35:19 PM > > > Subject: Re: Re: Support to Lose Weight > > > > > > > > > Sue, > > > I struggle with the same issue that you've all been > talking about. I need to lose around the same amount as you do in > order to go any further with transplant. Fortunately I am still > considered way to healthy (I find that somewhat amusing) to be > considered for transplant, overweight or not. But I also realize > that could change at any time. > > > My nsip seems to have been caused by the dermatomyositis which > means that theoretically controlling my auto-immune condition helps > to prevent worsening of my lung condition. Can't count on that > obviously. Who do you see at Duke? I see Lake on, he has told > me that life expectancy with nsip (both fibrotic and cellular) > varies tremendously from stats similar to IPF as you said to > literally decades of stability. It may ultimately depend on what > caused it. > > > > > > What I'm doing right now is radically different from anything > else I've ever done. I've begun working with a nutritionist from > the Duke Center for Living and have begun eating an 'anti- > inflammation' diet. I'm not at all focusing on losing weight > (though I am) it's more about choosing to eat foods that can help my > body be as healthy as possible. I don't know how this will work for > me over the long haul but I'm giving it a go cause what I've done up > till now hasn't gotten me anything but aggravation. > > > > > > Beth in North Carolina > > > Moderator > > > Fibrotic NSIP 06/06 Dermatomyositi s 11/08 > > >  > > > " May you never take one single breath for granted " > > > > > > > > > > > > > > > ____________ _________ _________ __ > > > From: Sue Dassel sdassel (AT) verizon (DOT) net> > > > To: Breathe-Support@ yahoogroups. com > > > Sent: Tuesday, February 17, 2009 10:17:40 AM > > > Subject: Re: Support to Lose Weight > > > > > > > > > Hi friends: I'd like to jump in here. I have always had a > weight problem and have also been on Cellcept (3000 mg / day) and > prednisone (now down to 5 mg) for the past 15 months. I gained > about 25 lbs and now need to lose 100 lbs to be considered for a > transplant at Duke. That 100 lbs might as well be 1000 lbs. I am > looking into a lap band or bypass and would be approved from an ins. > Standpoint, but before being considered Ihave to get an EKG, and a > recent PFT, a psychologist eval and some other test. I am in the > process of getting this info together. My pulmodoc at Duke has > hesitantly said he would approve of this procedure for me. My > local pulmodoc told me it's almost impossible to lose weight on > prednisone and I don't want to go through a lap band procedure if > I'm only going to lose a small amount of weight. The other thing he > told me was that fibrotic NSIP is very close to IPF in terms of life > expectancy.  My last PFT done > > > here locally was not very good from the diffusion standpoint > †" only 19% of predicted†" but the lung volume and other tests were > not bad at all.      Doc said there may be a variation in > equipment from here to Duke so I guess my test in March will tell > more. > > > I am going back to Duke in March, and I have a feeling he is > going to change the meds and probably up the prednisone. I am > really in a quandary. > > > I know part of my eating is psychological and the thought of a > diet when dealing with this terminal disease is almost too much for > me to handle. I don't want to feel deprived. It's not that I eat > much in quantity because I feel terrible if I have overeaten, I just > make the wrong choices so I don't feel deprived. > > > There, I got it off my chest.. Any suggestions/ > recommendations would be welcome. > > > Sue D. > > > 62 yr old, Fibrotic NSIP dx 9/07, VA > > >  > > > > > > > > > > ________________________________ > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 8.0.237 / Virus Database: 270.11.0/1959 - Release Date: 02/18/09 20:55:00 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2009 Report Share Posted February 19, 2009 > > > > > > Jack, > > > Dr. Weil's website has alot of information on an anti- > inflammatory diet. Here is a link to his food pyramid: > > > http://www.drweil. com/drw/u/ ART02995/ Dr-Weil-Anti- > Inflammatory- Food-Pyramid. html > > > > > > I realize that this may be controversial to some people.. I'm > not saying anyone should make the same changes I have, just sharing > what I've been working on diet wise. I feel very comfortable with > this partly because I'm working with a nutritionist at Duke who is > completely familiar with my medical situation and my history and > more importantly I' m doing this with the blessing and encouragement > of both my pulmonologist and my rheumatologist at Duke. > > >  > > > Beth in North Carolina > > > Moderator > > > Fibrotic NSIP 06/06 Dermatomyositi s 11/08 > > >  > > > " May you never take one single breath for granted " > > > > > > > > > > > > > > > ____________ _________ _________ __ > > > From: Jack Marshall mrshlljck@ . > > > To: Breathe-Support@ yahoogroups. com > > > Sent: Tuesday, February 17, 2009 4:04:42 PM > > > Subject: Re: Re: Support to Lose Weight > > > > > > > > > MB, I've never heard of an anti-inflammatory diet, but I am very > interested in one. Can you share info > > > on what it consists of? > > >  Jack > > > 79/IPF - UIP/dx06/05 Maine > > > > > > > > > > > > > > > ____________ _________ _________ __ > > > From: Beth mbmurtha (AT) yahoo (DOT) com> > > > To: Breathe-Support@ yahoogroups. com > > > Sent: Tuesday, February 17, 2009 2:35:19 PM > > > Subject: Re: Re: Support to Lose Weight > > > > > > > > > Sue, > > > I struggle with the same issue that you've all been > talking about. I need to lose around the same amount as you do in > order to go any further with transplant. Fortunately I am still > considered way to healthy (I find that somewhat amusing) to be > considered for transplant, overweight or not. But I also realize > that could change at any time. > > > My nsip seems to have been caused by the dermatomyositis which > means that theoretically controlling my auto-immune condition helps > to prevent worsening of my lung condition. Can't count on that > obviously. Who do you see at Duke? I see Lake on, he has told > me that life expectancy with nsip (both fibrotic and cellular) > varies tremendously from stats similar to IPF as you said to > literally decades of stability. It may ultimately depend on what > caused it. > > > > > > What I'm doing right now is radically different from anything > else I've ever done. I've begun working with a nutritionist from > the Duke Center for Living and have begun eating an 'anti- > inflammation' diet. I'm not at all focusing on losing weight > (though I am) it's more about choosing to eat foods that can help my > body be as healthy as possible. I don't know how this will work for > me over the long haul but I'm giving it a go cause what I've done up > till now hasn't gotten me anything but aggravation. > > > > > > Beth in North Carolina > > > Moderator > > > Fibrotic NSIP 06/06 Dermatomyositi s 11/08 > > >  > > > " May you never take one single breath for granted " > > > > > > > > > > > > > > > ____________ _________ _________ __ > > > From: Sue Dassel sdassel (AT) verizon (DOT) net> > > > To: Breathe-Support@ yahoogroups. com > > > Sent: Tuesday, February 17, 2009 10:17:40 AM > > > Subject: Re: Support to Lose Weight > > > > > > > > > Hi friends: I'd like to jump in here. I have always had a > weight problem and have also been on Cellcept (3000 mg / day) and > prednisone (now down to 5 mg) for the past 15 months. I gained > about 25 lbs and now need to lose 100 lbs to be considered for a > transplant at Duke. That 100 lbs might as well be 1000 lbs. I am > looking into a lap band or bypass and would be approved from an ins. > Standpoint, but before being considered Ihave to get an EKG, and a > recent PFT, a psychologist eval and some other test. I am in the > process of getting this info together. My pulmodoc at Duke has > hesitantly said he would approve of this procedure for me. My > local pulmodoc told me it's almost impossible to lose weight on > prednisone and I don't want to go through a lap band procedure if > I'm only going to lose a small amount of weight. The other thing he > told me was that fibrotic NSIP is very close to IPF in terms of life > expectancy.  My last PFT done > > > here locally was not very good from the diffusion standpoint > †" only 19% of predicted†" but the lung volume and other tests were > not bad at all.      Doc said there may be a variation in > equipment from here to Duke so I guess my test in March will tell > more. > > > I am going back to Duke in March, and I have a feeling he is > going to change the meds and probably up the prednisone. I am > really in a quandary. > > > I know part of my eating is psychological and the thought of a > diet when dealing with this terminal disease is almost too much for > me to handle. I don't want to feel deprived. It's not that I eat > much in quantity because I feel terrible if I have overeaten, I just > make the wrong choices so I don't feel deprived. > > > There, I got it off my chest.. Any suggestions/ > recommendations would be welcome. > > > Sue D. > > > 62 yr old, Fibrotic NSIP dx 9/07, VA > > >  > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2009 Report Share Posted February 19, 2009 > > > > > > Jack, > > > Dr. Weil's website has alot of information on an anti- > inflammatory diet. Here is a link to his food pyramid: > > > http://www.drweil. com/drw/u/ ART02995/ Dr-Weil-Anti- > Inflammatory- Food-Pyramid. html > > > > > > I realize that this may be controversial to some people.. I'm > not saying anyone should make the same changes I have, just sharing > what I've been working on diet wise. I feel very comfortable with > this partly because I'm working with a nutritionist at Duke who is > completely familiar with my medical situation and my history and > more importantly I' m doing this with the blessing and encouragement > of both my pulmonologist and my rheumatologist at Duke. > > >  > > > Beth in North Carolina > > > Moderator > > > Fibrotic NSIP 06/06 Dermatomyositi s 11/08 > > >  > > > " May you never take one single breath for granted " > > > > > > > > > > > > > > > ____________ _________ _________ __ > > > From: Jack Marshall mrshlljck@ . > > > To: Breathe-Support@ yahoogroups. com > > > Sent: Tuesday, February 17, 2009 4:04:42 PM > > > Subject: Re: Re: Support to Lose Weight > > > > > > > > > MB, I've never heard of an anti-inflammatory diet, but I am very > interested in one. Can you share info > > > on what it consists of? > > >  Jack > > > 79/IPF - UIP/dx06/05 Maine > > > > > > > > > > > > > > > ____________ _________ _________ __ > > > From: Beth mbmurtha (AT) yahoo (DOT) com> > > > To: Breathe-Support@ yahoogroups. com > > > Sent: Tuesday, February 17, 2009 2:35:19 PM > > > Subject: Re: Re: Support to Lose Weight > > > > > > > > > Sue, > > > I struggle with the same issue that you've all been > talking about. I need to lose around the same amount as you do in > order to go any further with transplant. Fortunately I am still > considered way to healthy (I find that somewhat amusing) to be > considered for transplant, overweight or not. But I also realize > that could change at any time. > > > My nsip seems to have been caused by the dermatomyositis which > means that theoretically controlling my auto-immune condition helps > to prevent worsening of my lung condition. Can't count on that > obviously. Who do you see at Duke? I see Lake on, he has told > me that life expectancy with nsip (both fibrotic and cellular) > varies tremendously from stats similar to IPF as you said to > literally decades of stability. It may ultimately depend on what > caused it. > > > > > > What I'm doing right now is radically different from anything > else I've ever done. I've begun working with a nutritionist from > the Duke Center for Living and have begun eating an 'anti- > inflammation' diet. I'm not at all focusing on losing weight > (though I am) it's more about choosing to eat foods that can help my > body be as healthy as possible. I don't know how this will work for > me over the long haul but I'm giving it a go cause what I've done up > till now hasn't gotten me anything but aggravation. > > > > > > Beth in North Carolina > > > Moderator > > > Fibrotic NSIP 06/06 Dermatomyositi s 11/08 > > >  > > > " May you never take one single breath for granted " > > > > > > > > > > > > > > > ____________ _________ _________ __ > > > From: Sue Dassel sdassel (AT) verizon (DOT) net> > > > To: Breathe-Support@ yahoogroups. com > > > Sent: Tuesday, February 17, 2009 10:17:40 AM > > > Subject: Re: Support to Lose Weight > > > > > > > > > Hi friends: I'd like to jump in here. I have always had a > weight problem and have also been on Cellcept (3000 mg / day) and > prednisone (now down to 5 mg) for the past 15 months. I gained > about 25 lbs and now need to lose 100 lbs to be considered for a > transplant at Duke. That 100 lbs might as well be 1000 lbs. I am > looking into a lap band or bypass and would be approved from an ins. > Standpoint, but before being considered Ihave to get an EKG, and a > recent PFT, a psychologist eval and some other test. I am in the > process of getting this info together. My pulmodoc at Duke has > hesitantly said he would approve of this procedure for me. My > local pulmodoc told me it's almost impossible to lose weight on > prednisone and I don't want to go through a lap band procedure if > I'm only going to lose a small amount of weight. The other thing he > told me was that fibrotic NSIP is very close to IPF in terms of life > expectancy.  My last PFT done > > > here locally was not very good from the diffusion standpoint > †" only 19% of predicted†" but the lung volume and other tests were > not bad at all.      Doc said there may be a variation in > equipment from here to Duke so I guess my test in March will tell > more. > > > I am going back to Duke in March, and I have a feeling he is > going to change the meds and probably up the prednisone. I am > really in a quandary. > > > I know part of my eating is psychological and the thought of a > diet when dealing with this terminal disease is almost too much for > me to handle. I don't want to feel deprived. It's not that I eat > much in quantity because I feel terrible if I have overeaten, I just > make the wrong choices so I don't feel deprived. > > > There, I got it off my chest.. Any suggestions/ > recommendations would be welcome. > > > Sue D. > > > 62 yr old, Fibrotic NSIP dx 9/07, VA > > >  > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 I have found that when i talk (especialy in front of a group) i need to speak slowly and to carefully pick my words and not to get excited. the same with walking, slow and easy goes along way. ken To: Breathe-Support Sent: Thursday, February 19, 2009 12:40:23 PMSubject: Re: Re: weight support i don't know about the eating, but definitely the talking -- makes me breathless Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 www.transplantfund. org From: Bruce Moreland <brucemoreland@ gmail.com>Subject: Re: weight supportTo: Breathe-Support@ yahoogroups. comDate: Thursday, February 19, 2009, 10:16 AM CaroI have eaten with many PF'ers and almost all have some problems withboth the eating and the talking at the table. I am so aware of howprevalent it is because they have always seemed so amazed that I don'thave a significant problem doing so. I've even had to pull my oximeterout and show a couple. So, it is quite the norm for eating and taking tolower your sats.> > >> > > Jack,> > > Dr. Weil's website has alot of information on ananti-> inflammatory diet. Here is a link to his food pyramid:> > > http://www.drweil. com/drw/u/ ART02995/ Dr-Weil-Anti-> Inflammatory- Food-Pyramid. html> > >> > > I realize that this may be controversial to some people..I'm> not saying anyone should make the same changes I have, justsharing> what I've been working on diet wise. I feel very comfortablewith> this partly because I'm working with a nutritionist at Duke whois> completely familiar with my medical situation and my history and> more importantly I' m doing this with the blessing andencouragement> of both my pulmonologist and my rheumatologist at Duke.> > > ÂÂ> > > Beth in North Carolina> > > Moderator> > > Fibrotic NSIP 06/06 Dermatomyositi s 11/08> > > ÂÂ> > > "May you never take one single breath for granted"> > >> > >> > >> > >> > > ____________ _________ _________ __> > > From: Jack Marshall mrshlljck@ .> > > To: Breathe-Support@ yahoogroups. com> > > Sent: Tuesday, February 17, 2009 4:04:42 PM> > > Subject: Re: Re: Support to Lose Weight> > >> > >> > > MB, I've never heard of an anti-inflammatory diet, but I am very> interested in one. Can you share info> > > on what it consists of?> > >  Jack> > > 79/IPF - UIP/dx06/05 Maine> > >> > >> > >> > >> > > ____________ _________ _________ __> > > From: Beth mbmurtha (AT) yahoo (DOT) com>> > > To: Breathe-Support@ yahoogroups. com> > > Sent: Tuesday, February 17, 2009 2:35:19 PM> > > Subject: Re: Re: Support to Lose Weight> > >> > >> > > Sue,> > > I struggle with the same issue that you've all been> talking about. I need to lose around the same amount as you doin> order to go any further with transplant. Fortunately I am still> considered way to healthy (I find that somewhat amusing) to be> considered for transplant, overweight or not. But I alsorealize> that could change at any time.> > > My nsip seems to have been caused by the dermatomyositiswhich> means that theoretically controlling my auto-immune condition helps> to prevent worsening of my lung condition. Can't counton that> obviously. Who do you see at Duke? I see Lake on, he hastold> me that life expectancy with nsip (both fibrotic and cellular)> varies tremendously from stats similar to IPF as you said to> literally decades of stability. It may ultimately depend onwhat> caused it.> > >> > > What I'm doing right now is radically different from anything> else I've ever done. I've begun working with anutritionist from> the Duke Center for Living and have begun eating an 'anti-> inflammation' diet. I'm not at all focusing on losing weight> (though I am) it's more about choosing to eat foods that can help my> body be as healthy as possible. I don't know how this will work for> me over the long haul but I'm giving it a go cause what I've done up> till now hasn't gotten me anything but aggravation.> > >> > > Beth in North Carolina> > > Moderator> > > Fibrotic NSIP 06/06 Dermatomyositi s 11/08> > > ÂÂ> > > "May you never take one single breath for granted"> > >> > >> > >> > >> > > ____________ _________ _________ __> > > From: Sue Dassel sdassel (AT) verizon (DOT) net>> > > To: Breathe-Support@ yahoogroups. com> > > Sent: Tuesday, February 17, 2009 10:17:40 AM> > > Subject: Re: Support to Lose Weight> > >> > >> > > Hi friends: I'd like to jump in here. I havealways had a> weight problem and have also been on Cellcept (3000 mg / day) and> prednisone (now down to 5 mg) for the past 15 months. I gained> about 25 lbs and now need to lose 100 lbs to be considered for a> transplant at Duke. That 100 lbs might as well be 1000lbs. I am> looking into a lap band or bypass and would be approved from an ins.> Standpoint, but before being considered Ihave to get an EKG, and a> recent PFT, a psychologist eval and some other test. I am inthe> process of getting this info together. My pulmodoc at Duke has> hesitantly said he would approve of this procedure for me. My> local pulmodoc told me it's almost impossible to lose weight on> prednisone and I don't want to go through a lap band procedure if> I'm only going to lose a small amount of weight. The other thing he> told me was that fibrotic NSIP is very close to IPF in terms of life> expectancy.  My last PFT done> > > here locally was not very good from the diffusion standpoint> â€"only 19% of predictedâ€"but the lung volume and othertests were> not bad at all.      Docsaid there may be a variation in> equipment from here to Duke so I guess my test in March will tell> more.> > > I am going back to Duke in March, and I have a feeling he is> going to change the meds and probably up the prednisone. I am> really in a quandary.> > > I know part of my eating is psychological and the thought of a> diet when dealing with this terminal disease is almost too much for> me to handle. I don't want to feel deprived. It's notthat I eat> much in quantity because I feel terrible if I have overeaten, I just> make the wrong choices so I don't feel deprived.> > > There, I got it off my chest.. Any suggestions/> recommendations would be welcome.> > > Sue D.> > > 62 yr old, Fibrotic NSIP dx 9/07, VA> > > ÂÂ> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 I have found that when i talk (especialy in front of a group) i need to speak slowly and to carefully pick my words and not to get excited. the same with walking, slow and easy goes along way. ken To: Breathe-Support Sent: Thursday, February 19, 2009 12:40:23 PMSubject: Re: Re: weight support i don't know about the eating, but definitely the talking -- makes me breathless Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 www.transplantfund. org From: Bruce Moreland <brucemoreland@ gmail.com>Subject: Re: weight supportTo: Breathe-Support@ yahoogroups. comDate: Thursday, February 19, 2009, 10:16 AM CaroI have eaten with many PF'ers and almost all have some problems withboth the eating and the talking at the table. I am so aware of howprevalent it is because they have always seemed so amazed that I don'thave a significant problem doing so. I've even had to pull my oximeterout and show a couple. So, it is quite the norm for eating and taking tolower your sats.> > >> > > Jack,> > > Dr. Weil's website has alot of information on ananti-> inflammatory diet. Here is a link to his food pyramid:> > > http://www.drweil. com/drw/u/ ART02995/ Dr-Weil-Anti-> Inflammatory- Food-Pyramid. html> > >> > > I realize that this may be controversial to some people..I'm> not saying anyone should make the same changes I have, justsharing> what I've been working on diet wise. I feel very comfortablewith> this partly because I'm working with a nutritionist at Duke whois> completely familiar with my medical situation and my history and> more importantly I' m doing this with the blessing andencouragement> of both my pulmonologist and my rheumatologist at Duke.> > > ÂÂ> > > Beth in North Carolina> > > Moderator> > > Fibrotic NSIP 06/06 Dermatomyositi s 11/08> > > ÂÂ> > > "May you never take one single breath for granted"> > >> > >> > >> > >> > > ____________ _________ _________ __> > > From: Jack Marshall mrshlljck@ .> > > To: Breathe-Support@ yahoogroups. com> > > Sent: Tuesday, February 17, 2009 4:04:42 PM> > > Subject: Re: Re: Support to Lose Weight> > >> > >> > > MB, I've never heard of an anti-inflammatory diet, but I am very> interested in one. Can you share info> > > on what it consists of?> > >  Jack> > > 79/IPF - UIP/dx06/05 Maine> > >> > >> > >> > >> > > ____________ _________ _________ __> > > From: Beth mbmurtha (AT) yahoo (DOT) com>> > > To: Breathe-Support@ yahoogroups. com> > > Sent: Tuesday, February 17, 2009 2:35:19 PM> > > Subject: Re: Re: Support to Lose Weight> > >> > >> > > Sue,> > > I struggle with the same issue that you've all been> talking about. I need to lose around the same amount as you doin> order to go any further with transplant. Fortunately I am still> considered way to healthy (I find that somewhat amusing) to be> considered for transplant, overweight or not. But I alsorealize> that could change at any time.> > > My nsip seems to have been caused by the dermatomyositiswhich> means that theoretically controlling my auto-immune condition helps> to prevent worsening of my lung condition. Can't counton that> obviously. Who do you see at Duke? I see Lake on, he hastold> me that life expectancy with nsip (both fibrotic and cellular)> varies tremendously from stats similar to IPF as you said to> literally decades of stability. It may ultimately depend onwhat> caused it.> > >> > > What I'm doing right now is radically different from anything> else I've ever done. I've begun working with anutritionist from> the Duke Center for Living and have begun eating an 'anti-> inflammation' diet. I'm not at all focusing on losing weight> (though I am) it's more about choosing to eat foods that can help my> body be as healthy as possible. I don't know how this will work for> me over the long haul but I'm giving it a go cause what I've done up> till now hasn't gotten me anything but aggravation.> > >> > > Beth in North Carolina> > > Moderator> > > Fibrotic NSIP 06/06 Dermatomyositi s 11/08> > > ÂÂ> > > "May you never take one single breath for granted"> > >> > >> > >> > >> > > ____________ _________ _________ __> > > From: Sue Dassel sdassel (AT) verizon (DOT) net>> > > To: Breathe-Support@ yahoogroups. com> > > Sent: Tuesday, February 17, 2009 10:17:40 AM> > > Subject: Re: Support to Lose Weight> > >> > >> > > Hi friends: I'd like to jump in here. I havealways had a> weight problem and have also been on Cellcept (3000 mg / day) and> prednisone (now down to 5 mg) for the past 15 months. I gained> about 25 lbs and now need to lose 100 lbs to be considered for a> transplant at Duke. That 100 lbs might as well be 1000lbs. I am> looking into a lap band or bypass and would be approved from an ins.> Standpoint, but before being considered Ihave to get an EKG, and a> recent PFT, a psychologist eval and some other test. I am inthe> process of getting this info together. My pulmodoc at Duke has> hesitantly said he would approve of this procedure for me. My> local pulmodoc told me it's almost impossible to lose weight on> prednisone and I don't want to go through a lap band procedure if> I'm only going to lose a small amount of weight. The other thing he> told me was that fibrotic NSIP is very close to IPF in terms of life> expectancy.  My last PFT done> > > here locally was not very good from the diffusion standpoint> â€"only 19% of predictedâ€"but the lung volume and othertests were> not bad at all.      Docsaid there may be a variation in> equipment from here to Duke so I guess my test in March will tell> more.> > > I am going back to Duke in March, and I have a feeling he is> going to change the meds and probably up the prednisone. I am> really in a quandary.> > > I know part of my eating is psychological and the thought of a> diet when dealing with this terminal disease is almost too much for> me to handle. I don't want to feel deprived. It's notthat I eat> much in quantity because I feel terrible if I have overeaten, I just> make the wrong choices so I don't feel deprived.> > > There, I got it off my chest.. Any suggestions/> recommendations would be welcome.> > > Sue D.> > > 62 yr old, Fibrotic NSIP dx 9/07, VA> > > ÂÂ> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 I have found that when i talk (especialy in front of a group) i need to speak slowly and to carefully pick my words and not to get excited. the same with walking, slow and easy goes along way. ken To: Breathe-Support Sent: Thursday, February 19, 2009 12:40:23 PMSubject: Re: Re: weight support i don't know about the eating, but definitely the talking -- makes me breathless Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 www.transplantfund. org From: Bruce Moreland <brucemoreland@ gmail.com>Subject: Re: weight supportTo: Breathe-Support@ yahoogroups. comDate: Thursday, February 19, 2009, 10:16 AM CaroI have eaten with many PF'ers and almost all have some problems withboth the eating and the talking at the table. I am so aware of howprevalent it is because they have always seemed so amazed that I don'thave a significant problem doing so. I've even had to pull my oximeterout and show a couple. So, it is quite the norm for eating and taking tolower your sats.> > >> > > Jack,> > > Dr. Weil's website has alot of information on ananti-> inflammatory diet. Here is a link to his food pyramid:> > > http://www.drweil. com/drw/u/ ART02995/ Dr-Weil-Anti-> Inflammatory- Food-Pyramid. html> > >> > > I realize that this may be controversial to some people..I'm> not saying anyone should make the same changes I have, justsharing> what I've been working on diet wise. I feel very comfortablewith> this partly because I'm working with a nutritionist at Duke whois> completely familiar with my medical situation and my history and> more importantly I' m doing this with the blessing andencouragement> of both my pulmonologist and my rheumatologist at Duke.> > > ÂÂ> > > Beth in North Carolina> > > Moderator> > > Fibrotic NSIP 06/06 Dermatomyositi s 11/08> > > ÂÂ> > > "May you never take one single breath for granted"> > >> > >> > >> > >> > > ____________ _________ _________ __> > > From: Jack Marshall mrshlljck@ .> > > To: Breathe-Support@ yahoogroups. com> > > Sent: Tuesday, February 17, 2009 4:04:42 PM> > > Subject: Re: Re: Support to Lose Weight> > >> > >> > > MB, I've never heard of an anti-inflammatory diet, but I am very> interested in one. Can you share info> > > on what it consists of?> > >  Jack> > > 79/IPF - UIP/dx06/05 Maine> > >> > >> > >> > >> > > ____________ _________ _________ __> > > From: Beth mbmurtha (AT) yahoo (DOT) com>> > > To: Breathe-Support@ yahoogroups. com> > > Sent: Tuesday, February 17, 2009 2:35:19 PM> > > Subject: Re: Re: Support to Lose Weight> > >> > >> > > Sue,> > > I struggle with the same issue that you've all been> talking about. I need to lose around the same amount as you doin> order to go any further with transplant. Fortunately I am still> considered way to healthy (I find that somewhat amusing) to be> considered for transplant, overweight or not. But I alsorealize> that could change at any time.> > > My nsip seems to have been caused by the dermatomyositiswhich> means that theoretically controlling my auto-immune condition helps> to prevent worsening of my lung condition. Can't counton that> obviously. Who do you see at Duke? I see Lake on, he hastold> me that life expectancy with nsip (both fibrotic and cellular)> varies tremendously from stats similar to IPF as you said to> literally decades of stability. It may ultimately depend onwhat> caused it.> > >> > > What I'm doing right now is radically different from anything> else I've ever done. I've begun working with anutritionist from> the Duke Center for Living and have begun eating an 'anti-> inflammation' diet. I'm not at all focusing on losing weight> (though I am) it's more about choosing to eat foods that can help my> body be as healthy as possible. I don't know how this will work for> me over the long haul but I'm giving it a go cause what I've done up> till now hasn't gotten me anything but aggravation.> > >> > > Beth in North Carolina> > > Moderator> > > Fibrotic NSIP 06/06 Dermatomyositi s 11/08> > > ÂÂ> > > "May you never take one single breath for granted"> > >> > >> > >> > >> > > ____________ _________ _________ __> > > From: Sue Dassel sdassel (AT) verizon (DOT) net>> > > To: Breathe-Support@ yahoogroups. com> > > Sent: Tuesday, February 17, 2009 10:17:40 AM> > > Subject: Re: Support to Lose Weight> > >> > >> > > Hi friends: I'd like to jump in here. I havealways had a> weight problem and have also been on Cellcept (3000 mg / day) and> prednisone (now down to 5 mg) for the past 15 months. I gained> about 25 lbs and now need to lose 100 lbs to be considered for a> transplant at Duke. That 100 lbs might as well be 1000lbs. I am> looking into a lap band or bypass and would be approved from an ins.> Standpoint, but before being considered Ihave to get an EKG, and a> recent PFT, a psychologist eval and some other test. I am inthe> process of getting this info together. My pulmodoc at Duke has> hesitantly said he would approve of this procedure for me. My> local pulmodoc told me it's almost impossible to lose weight on> prednisone and I don't want to go through a lap band procedure if> I'm only going to lose a small amount of weight. The other thing he> told me was that fibrotic NSIP is very close to IPF in terms of life> expectancy.  My last PFT done> > > here locally was not very good from the diffusion standpoint> â€"only 19% of predictedâ€"but the lung volume and othertests were> not bad at all.      Docsaid there may be a variation in> equipment from here to Duke so I guess my test in March will tell> more.> > > I am going back to Duke in March, and I have a feeling he is> going to change the meds and probably up the prednisone. I am> really in a quandary.> > > I know part of my eating is psychological and the thought of a> diet when dealing with this terminal disease is almost too much for> me to handle. I don't want to feel deprived. It's notthat I eat> much in quantity because I feel terrible if I have overeaten, I just> make the wrong choices so I don't feel deprived.> > > There, I got it off my chest.. Any suggestions/> recommendations would be welcome.> > > Sue D.> > > 62 yr old, Fibrotic NSIP dx 9/07, VA> > > ÂÂ> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 Caro you really do need to use the oxygen and as everyone will tell you even better than i carrying things, vacuuming, bending over, just walking up the stairs is difficult and frustrating like you said. i know linda and joyce have reminded me of ways of doing things to conserve energy and my breath. i have to tell you i too suck the air in and have done it for years and in front of patients and i call it my backwards burp.. i have not been able to explain it to my docs but i do understand why it happens. never has happened when i was eating; that is scarey.. take care and good luck.. the group can give you alot of good ideas. patti, nj, ipf 7'06, raynauds,scleroderma, PH 2'07 > > > > > > > > Jack, > > > > Dr. Weil's website has alot of information on an anti- > > inflammatory diet. Here is a link to his food pyramid: > > > > http://www.drweil. com/drw/u/ ART02995/ Dr-Weil-Anti- > > Inflammatory- Food-Pyramid. html > > > > > > > > I realize that this may be controversial to some people.. > I'm > > not saying anyone should make the same changes I have, just > sharing > > what I've been working on diet wise. I feel very comfortable > with > > this partly because I'm working with a nutritionist at Duke who > is > > completely familiar with my medical situation and my history and > > more importantly I' m doing this with the blessing and > encouragement > > of both my pulmonologist and my rheumatologist at Duke. > > > >  > > > > Beth in North Carolina > > > > Moderator > > > > Fibrotic NSIP 06/06 Dermatomyositi s 11/08 > > > >  > > > > " May you never take one single breath for granted " > > > > > > > > > > > > > > > > > > > > ____________ _________ _________ __ > > > > From: Jack Marshall mrshlljck@ . > > > > To: Breathe-Support@ yahoogroups. com > > > > Sent: Tuesday, February 17, 2009 4:04:42 PM > > > > Subject: Re: Re: Support to Lose Weight > > > > > > > > > > > > MB, I've never heard of an anti-inflammatory diet, but I am > very > > interested in one. Can you share info > > > > on what it consists of? > > > >  Jack > > > > 79/IPF - UIP/dx06/05 Maine > > > > > > > > > > > > > > > > > > > > ____________ _________ _________ __ > > > > From: Beth mbmurtha (AT) yahoo (DOT) com> > > > > To: Breathe-Support@ yahoogroups. com > > > > Sent: Tuesday, February 17, 2009 2:35:19 PM > > > > Subject: Re: Re: Support to Lose Weight > > > > > > > > > > > > Sue, > > > > I struggle with the same issue that you've all been > > talking about. I need to lose around the same amount as you do > in > > order to go any further with transplant. Fortunately I am still > > considered way to healthy (I find that somewhat amusing) to be > > considered for transplant, overweight or not. But I also realize > > that could change at any time. > > > > My nsip seems to have been caused by the dermatomyositis > which > > means that theoretically controlling my auto-immune condition helps > > to prevent worsening of my lung condition. Can't count on > that > > obviously. Who do you see at Duke? I see Lake on, he has > told > > me that life expectancy with nsip (both fibrotic and cellular) > > varies tremendously from stats similar to IPF as you said to > > literally decades of stability. It may ultimately depend on what > > caused it. > > > > > > > > What I'm doing right now is radically different from anything > > else I've ever done. I've begun working with a nutritionist > from > > the Duke Center for Living and have begun eating an 'anti- > > inflammation' diet. I'm not at all focusing on losing weight > > (though I am) it's more about choosing to eat foods that can help > my > > body be as healthy as possible. I don't know how this will work for > > me over the long haul but I'm giving it a go cause what I've done > up > > till now hasn't gotten me anything but aggravation. > > > > > > > > Beth in North Carolina > > > > Moderator > > > > Fibrotic NSIP 06/06 Dermatomyositi s 11/08 > > > >  > > > > " May you never take one single breath for granted " > > > > > > > > > > > > > > > > > > > > ____________ _________ _________ __ > > > > From: Sue Dassel sdassel (AT) verizon (DOT) net> > > > > To: Breathe-Support@ yahoogroups. com > > > > Sent: Tuesday, February 17, 2009 10:17:40 AM > > > > Subject: Re: Support to Lose Weight > > > > > > > > > > > > Hi friends: I'd like to jump in here. I have always had > a > > weight problem and have also been on Cellcept (3000 mg / day) and > > prednisone (now down to 5 mg) for the past 15 months. I gained > > about 25 lbs and now need to lose 100 lbs to be considered for a > > transplant at Duke. That 100 lbs might as well be 1000 lbs. > I am > > looking into a lap band or bypass and would be approved from an > ins. > > Standpoint, but before being considered Ihave to get an EKG, and a > > recent PFT, a psychologist eval and some other test. I am in > the > > process of getting this info together. My pulmodoc at Duke has > > hesitantly said he would approve of this procedure for me. My > > local pulmodoc told me it's almost impossible to lose weight on > > prednisone and I don't want to go through a lap band procedure if > > I'm only going to lose a small amount of weight. The other thing he > > told me was that fibrotic NSIP is very close to IPF in terms of > life > > expectancy.  My last PFT done > > > > here locally was not very good from the diffusion standpoint > > †" only 19% of predicted†" but the lung volume and other > tests were > > not bad at all.      Doc said there may be a > variation in > > equipment from here to Duke so I guess my test in March will tell > > more. > > > > I am going back to Duke in March, and I have a feeling he is > > going to change the meds and probably up the prednisone. I am > > really in a quandary. > > > > I know part of my eating is psychological and the thought of a > > diet when dealing with this terminal disease is almost too much for > > me to handle. I don't want to feel deprived. It's not that > I eat > > much in quantity because I feel terrible if I have overeaten, I > just > > make the wrong choices so I don't feel deprived. > > > > There, I got it off my chest.. Any suggestions/ > > recommendations would be welcome. > > > > Sue D. > > > > 62 yr old, Fibrotic NSIP dx 9/07, VA > > > >  > > > > > > > > > > > > > > > > > ________________________________ > > > > > > No virus found in this incoming message. > > Checked by AVG - www.avg.com > > Version: 8.0.237 / Virus Database: 270.11.0/1959 - Release Date: > 02/18/09 20:55:00 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 Caro you really do need to use the oxygen and as everyone will tell you even better than i carrying things, vacuuming, bending over, just walking up the stairs is difficult and frustrating like you said. i know linda and joyce have reminded me of ways of doing things to conserve energy and my breath. i have to tell you i too suck the air in and have done it for years and in front of patients and i call it my backwards burp.. i have not been able to explain it to my docs but i do understand why it happens. never has happened when i was eating; that is scarey.. take care and good luck.. the group can give you alot of good ideas. patti, nj, ipf 7'06, raynauds,scleroderma, PH 2'07 > > > > > > > > Jack, > > > > Dr. Weil's website has alot of information on an anti- > > inflammatory diet. Here is a link to his food pyramid: > > > > http://www.drweil. com/drw/u/ ART02995/ Dr-Weil-Anti- > > Inflammatory- Food-Pyramid. html > > > > > > > > I realize that this may be controversial to some people.. > I'm > > not saying anyone should make the same changes I have, just > sharing > > what I've been working on diet wise. I feel very comfortable > with > > this partly because I'm working with a nutritionist at Duke who > is > > completely familiar with my medical situation and my history and > > more importantly I' m doing this with the blessing and > encouragement > > of both my pulmonologist and my rheumatologist at Duke. > > > >  > > > > Beth in North Carolina > > > > Moderator > > > > Fibrotic NSIP 06/06 Dermatomyositi s 11/08 > > > >  > > > > " May you never take one single breath for granted " > > > > > > > > > > > > > > > > > > > > ____________ _________ _________ __ > > > > From: Jack Marshall mrshlljck@ . > > > > To: Breathe-Support@ yahoogroups. com > > > > Sent: Tuesday, February 17, 2009 4:04:42 PM > > > > Subject: Re: Re: Support to Lose Weight > > > > > > > > > > > > MB, I've never heard of an anti-inflammatory diet, but I am > very > > interested in one. Can you share info > > > > on what it consists of? > > > >  Jack > > > > 79/IPF - UIP/dx06/05 Maine > > > > > > > > > > > > > > > > > > > > ____________ _________ _________ __ > > > > From: Beth mbmurtha (AT) yahoo (DOT) com> > > > > To: Breathe-Support@ yahoogroups. com > > > > Sent: Tuesday, February 17, 2009 2:35:19 PM > > > > Subject: Re: Re: Support to Lose Weight > > > > > > > > > > > > Sue, > > > > I struggle with the same issue that you've all been > > talking about. I need to lose around the same amount as you do > in > > order to go any further with transplant. Fortunately I am still > > considered way to healthy (I find that somewhat amusing) to be > > considered for transplant, overweight or not. But I also realize > > that could change at any time. > > > > My nsip seems to have been caused by the dermatomyositis > which > > means that theoretically controlling my auto-immune condition helps > > to prevent worsening of my lung condition. Can't count on > that > > obviously. Who do you see at Duke? I see Lake on, he has > told > > me that life expectancy with nsip (both fibrotic and cellular) > > varies tremendously from stats similar to IPF as you said to > > literally decades of stability. It may ultimately depend on what > > caused it. > > > > > > > > What I'm doing right now is radically different from anything > > else I've ever done. I've begun working with a nutritionist > from > > the Duke Center for Living and have begun eating an 'anti- > > inflammation' diet. I'm not at all focusing on losing weight > > (though I am) it's more about choosing to eat foods that can help > my > > body be as healthy as possible. I don't know how this will work for > > me over the long haul but I'm giving it a go cause what I've done > up > > till now hasn't gotten me anything but aggravation. > > > > > > > > Beth in North Carolina > > > > Moderator > > > > Fibrotic NSIP 06/06 Dermatomyositi s 11/08 > > > >  > > > > " May you never take one single breath for granted " > > > > > > > > > > > > > > > > > > > > ____________ _________ _________ __ > > > > From: Sue Dassel sdassel (AT) verizon (DOT) net> > > > > To: Breathe-Support@ yahoogroups. com > > > > Sent: Tuesday, February 17, 2009 10:17:40 AM > > > > Subject: Re: Support to Lose Weight > > > > > > > > > > > > Hi friends: I'd like to jump in here. I have always had > a > > weight problem and have also been on Cellcept (3000 mg / day) and > > prednisone (now down to 5 mg) for the past 15 months. I gained > > about 25 lbs and now need to lose 100 lbs to be considered for a > > transplant at Duke. That 100 lbs might as well be 1000 lbs. > I am > > looking into a lap band or bypass and would be approved from an > ins. > > Standpoint, but before being considered Ihave to get an EKG, and a > > recent PFT, a psychologist eval and some other test. I am in > the > > process of getting this info together. My pulmodoc at Duke has > > hesitantly said he would approve of this procedure for me. My > > local pulmodoc told me it's almost impossible to lose weight on > > prednisone and I don't want to go through a lap band procedure if > > I'm only going to lose a small amount of weight. The other thing he > > told me was that fibrotic NSIP is very close to IPF in terms of > life > > expectancy.  My last PFT done > > > > here locally was not very good from the diffusion standpoint > > †" only 19% of predicted†" but the lung volume and other > tests were > > not bad at all.      Doc said there may be a > variation in > > equipment from here to Duke so I guess my test in March will tell > > more. > > > > I am going back to Duke in March, and I have a feeling he is > > going to change the meds and probably up the prednisone. I am > > really in a quandary. > > > > I know part of my eating is psychological and the thought of a > > diet when dealing with this terminal disease is almost too much for > > me to handle. I don't want to feel deprived. It's not that > I eat > > much in quantity because I feel terrible if I have overeaten, I > just > > make the wrong choices so I don't feel deprived. > > > > There, I got it off my chest.. Any suggestions/ > > recommendations would be welcome. > > > > Sue D. > > > > 62 yr old, Fibrotic NSIP dx 9/07, VA > > > >  > > > > > > > > > > > > > > > > > ________________________________ > > > > > > No virus found in this incoming message. > > Checked by AVG - www.avg.com > > Version: 8.0.237 / Virus Database: 270.11.0/1959 - Release Date: > 02/18/09 20:55:00 > > > Quote Link to comment Share on other sites More sharing options...
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