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 this is a big problem; i was told not to drink fluids with my meals and also, 6 small meals; i have also found that certain foods are harder for me to eat and breathe, A hoagie is one of those things, can't eat mozzarella sticks anymore.. it is strange the things that change and difficult to explain to others. Also, not drinking fluids too soon before bed.. these things also help if you have GERD. patti, nj > > > > > > > > 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 hadn't thought about stopping eating until I catch my breath. That would be a good idea instead of just giving up and throwing it away. Some days I just have bad days and don't even want to try any more. But other days I do whatever it takes and am determined to keep going as long as possible. Today I feel a little better than yesterday but my Sjogren's is giving me fits this morning. My mouth is so dry I think I could drink a gallon of water and it wouldn't be enough!! 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: Friday, February 20, 2009 5:47:11 AMSubject: Re: weight support 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,scleroderm a, 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 20, 2009 Report Share Posted February 20, 2009 I hadn't thought about stopping eating until I catch my breath. That would be a good idea instead of just giving up and throwing it away. Some days I just have bad days and don't even want to try any more. But other days I do whatever it takes and am determined to keep going as long as possible. Today I feel a little better than yesterday but my Sjogren's is giving me fits this morning. My mouth is so dry I think I could drink a gallon of water and it wouldn't be enough!! 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: Friday, February 20, 2009 5:47:11 AMSubject: Re: weight support 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,scleroderm a, 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 20, 2009 Report Share Posted February 20, 2009 I hadn't thought about stopping eating until I catch my breath. That would be a good idea instead of just giving up and throwing it away. Some days I just have bad days and don't even want to try any more. But other days I do whatever it takes and am determined to keep going as long as possible. Today I feel a little better than yesterday but my Sjogren's is giving me fits this morning. My mouth is so dry I think I could drink a gallon of water and it wouldn't be enough!! 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: Friday, February 20, 2009 5:47:11 AMSubject: Re: weight support 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,scleroderm a, 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 20, 2009 Report Share Posted February 20, 2009 I hate eating out, too. Since I have the Sjogren's, I get choked a lot and then start coughing and can't stop. Really embarrassing. Even drinking fluids won't stop it most times. People tend to stare, but I try anyway. I just keep telling myself they just don't understand. I mostly just cook myself and eat at home. If I do want fast food, I usually get it delivered or take out. 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 9:56:19 PMSubject: Re: weight support > > >> > > 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 20, 2009 Report Share Posted February 20, 2009 I hate eating out, too. Since I have the Sjogren's, I get choked a lot and then start coughing and can't stop. Really embarrassing. Even drinking fluids won't stop it most times. People tend to stare, but I try anyway. I just keep telling myself they just don't understand. I mostly just cook myself and eat at home. If I do want fast food, I usually get it delivered or take out. 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 9:56:19 PMSubject: Re: weight support > > >> > > 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 20, 2009 Report Share Posted February 20, 2009 I hate eating out, too. Since I have the Sjogren's, I get choked a lot and then start coughing and can't stop. Really embarrassing. Even drinking fluids won't stop it most times. People tend to stare, but I try anyway. I just keep telling myself they just don't understand. I mostly just cook myself and eat at home. If I do want fast food, I usually get it delivered or take out. 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 9:56:19 PMSubject: Re: weight support > > >> > > 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 20, 2009 Report Share Posted February 20, 2009 Caro eventually you will think of supplemental O2 as one of your best friends Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 www.transplantfund.org--- Subject: Re: Re: weight supportTo: Breathe-Support Date: Thursday, February 19, 2009, 5:06 PM 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 From: Bruce Moreland <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: 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 20, 2009 Report Share Posted February 20, 2009 Caro eventually you will think of supplemental O2 as one of your best friends Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 www.transplantfund.org--- Subject: Re: Re: weight supportTo: Breathe-Support Date: Thursday, February 19, 2009, 5:06 PM 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 From: Bruce Moreland <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: 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 20, 2009 Report Share Posted February 20, 2009 Caro eventually you will think of supplemental O2 as one of your best friends Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 www.transplantfund.org--- Subject: Re: Re: weight supportTo: Breathe-Support Date: Thursday, February 19, 2009, 5:06 PM 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 From: Bruce Moreland <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: 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 20, 2009 Report Share Posted February 20, 2009 Oh CARO.. I'm sure everyone will jump in & tell you that O2 is your FRIEND....being low on O2 overloads your whole system & makes your major organs VERY unhappy... don't delay, if your Doc thinks you need it on exertion then YOU DO! You'll breather easier, think better & be able to do MORE! Silly ! lotsa, in Oz > > >> > > 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 23, 2009 Report Share Posted February 23, 2009 hi Caro you live in MS, what part my bro lives in Columbus. Didn't realize choking was part of Sj.. take care.. patti, nj > > > > > > > > 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...
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