Guest guest Posted March 1, 2009 Report Share Posted March 1, 2009 Hi Margaret, Sue, and Sorry haven't been on, i do want so to be accountable so i can get the weight off. How have you guys been doing. Just so you know it wasn't that i was backing off this commitment. Was in the hospital for few days breathing continued to worsen and then i noticed a weight gain of 9 pounds in less than 2 days. Had me go in for testing to see if the PH worsened and then we were going to talk active list. All the tests were normal, or unchanged except my 6 min walk which brought me up to 6L walking and p ox 90. That was after all the poundage off. Well, lost the 9 pounds and an additional 3 pounds. (All water) only puts me at the i still need to lose 45 pounds but for emergency activation for transplant, 8 pounds. I felt like such a cow on tuesday when i went in. I am now on Zinc for the taste changes, so maybe i can eat more healthy. going to check the Weils diet. Oh, also, if remember send me the soup receipe you were talking about. Patti,nj, ipf 7'06, raynauds, scleroderma,PH 2'7 > > > > > > > > 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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