Guest guest Posted December 12, 2008 Report Share Posted December 12, 2008 Not to worry ^.^ I've been worried about this for several months now and you haven't added any real concerns. I've always known I can't live on vitamins.I've been trying to drink a couple of Ensures each day, but It doesn't seem to make that much difference. I've been talking to my docs about it though. My pulmodude (see I'm with it lol) says "don't lose any more weight" DUH... and my rheumodude has mentioned perhaps trying something to increase appetite like marinol.My daughter had mentioned that maybe the liquid food that is used in people unable to feed themselves might be made available to me also. Perhaps I should ask. Bet it's nasty beats starving though.I'm surprised that it's not a more common problem though. I mean whatever I do it's like I'm pulling a 100 lb load with me gasping for air all the way. I imagine most of us are that way. All that breathing burns tons of calories. Any way thanks for the responses and for being here peoples ^.^Blessings<>< Citrus Heights, CaliforniaLIP-2006NHL-1999SJS-1994Mic. 5: 2 -‘But you, Bethlehem, in the land of Judah, are by no means least among the rulers of Judah; for out of you will come a ruler who will be the shepherd of my people Israel.’” Subject: Re: vitamins vs. foodTo: Breathe-Support Date: Thursday, December 11, 2008, 7:44 PM Oh no dear I'm sorry if my comments have carelessly caused you anxiety... has your Doctors ever suggested putting you on a special Liquid Food diet that is able to hold & deliver the Vitamins/Minerals you need to sustain you. In those special supplements the uptake is much better 'cos the nutrition is combined properly & the body can 'Uptake' what it needs. If you become malnourished Nutrition can be delivered via an intravenous line. I have read that with PF eating can become a major problem.. often because it is hard to breathe and eat at the same time! From what you've said you do try to eat little & often but it IS hard when you don't have any appetite. I became very under-weight & malnourished years ago when my Gall Bladder was crook.... even after it was removed it took 2 years to get back to normal eating. I remember eating a LOT of Baby Cereal.. don;t know why but it was all I could face... it kept me going for a long, long time! Sometimes Doctors don't realise what is going on unbtil you alert them to your eating problem! Have you talked about this with your Doctor?????? ? Hugs, in Oz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2008 Report Share Posted December 13, 2008 When my ex was diagnosed with ALS and still able to eat, his wife made a milkshake for him to drink at least once a day. the milkshake included milk, ice cream, I think something from the health food store, maybe Whey Protein, and I don't remember what else. it was important to keep his weight and calories up because eventually he would lose the ablilty to eat. He has been on a feeding tube for several years -- nothing by mouth. when i make my yogurt shake, i mix the yogurt with fruit, fresh or canned, and drink it also when my ex was still able to swallow, his food would be pureed. so if eating is difficult for you, maybe drinking or slurping would be an option sweet potatoes are gaining a reputation as a great food, perhaps mashed sweet potatoes would be a good option for you also Pink Joyce IPF 3/06 Pennsylvania Donate Life Subject: Re: vitamins vs. foodTo: Breathe-Support Date: Friday, December 12, 2008, 9:06 PM I'm surprised that more folk aren't struggling with the same problem too .. it certainly shows up as one the clear symptoms of PF.. but maybe because many of us have been diagnosed at an earlier stage of progression it is yet to affect us that way. Prednisone probably masks the potaentail for those taking that drug.. they have the opposite problem... imagine feeling STARVING but not having enough BREATH to satisfy your hunger....YIKES that wouold be CRUEL! Also prescribing O2 at a sensible, earlier stage might also imnprove people's capacity to eat properly. I have a horrid suspicion that in Australia the Specialists consider O2 to be only for late stage 'relief'... I'm yet to confront that one. I'll be yelling for it & prepared to pay out of my own pocket to keep the food going down! Do PUSH for some help on this one... Doctors often don't act until the Patient really makes a song n dance about things. You need to be nourished for heaven's sakes! How else are you meant to fight the blinkin' battle! Do you like Mashed Bananas & Ice Cream or Yoghurt.... Bananas are a 'complete' food & very easily digested.... .... Your family should run an in-house competition to see you can tempt you with what! They can put in all the effort of preparations & get their reward when they see you consuming the delectable offerings they have made for you! Good Luck & do let us know how you're doing on this score.... we CARE about you ! Lotsa, in Oz > From: gina.francis@ ...> Subject: Re: vitamins vs. food> To: Breathe-Support@ yahoogroups. com> Date: Thursday, December 11, 2008, 7:44 PM> > > > > > > > > > > > Oh no dear I'm sorry if my comments have carelessly caused you anxiety... has your Doctors ever suggested putting you on a special Liquid Food diet that is able to hold & deliver the Vitamins/Minerals you need to sustain you. In those special supplements the uptake is much better 'cos the nutrition is combined properly & the body can 'Uptake' what it needs.> If you become malnourished Nutrition can be delivered via an intravenous line. > I have read that with PF eating can become a major problem.. often because it is hard to breathe and eat at the same time!> From what you've said you do try to eat little & often but it IS hard when you don't have any appetite. I became very under-weight & malnourished years ago when my Gall Bladder was crook.... even after it was removed it took 2 years to get back to normal eating. I remember eating a LOT of Baby Cereal.. don;t know why but it was all I could face... it kept me going for a long, long time!> Sometimes Doctors don't realise what is going on unbtil you alert them to your eating problem! Have you talked about this with your Doctor?????? ?> Hugs,> in Oz> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2008 Report Share Posted December 13, 2008 Thank you Pink, Yes sweet potatoes are listed in the "super foods" I looked online and there are a few shake recipes. They add a couple of tablespoons of oil and protein powder to ice cream, fruit and milk to hide extra calories. It's a lot of sugar, but It's probably more important just to get enough calories right now.I also found a site that suggests that you can basically make a liquid food by pureeing of virtually anything. They even list pizza and hamburgers UGH! I'd rather pick at my pizza than drink it lol. But pureeing what I can seems a good idea. I do have a very dry mouth.I weigh 111 lbs right now. That doesn't sound that thin, but I'm actually pretty thin at 130. I'm one of those truly big boned people and right now every bone on my upper body is showing. Really disgusting. A little extra weight looks much more appealing that this anorexic look.Thanks everyone for all the suggestions and encouragement. ^^Blessings <>< Citrus Heights, CaliforniaLIP-2006NHL-1999SJS-1994Mic. 5: 2 -‘But you, Bethlehem, in the land of Judah, are by no means least among the rulers of Judah; for out of you will come a ruler who will be the shepherd of my people Israel.’” When my ex was diagnosed with ALS and still able to eat, his wife made a milkshake for him to drink at least once a day. the milkshake included milk, ice cream, I think something from the health food store, maybe Whey Protein, and I don't remember what else. it was important to keep his weight and calories up because eventually he would lose the ablilty to eat. He has been on a feeding tube for several years -- nothing by mouth. when i make my yogurt shake, i mix the yogurt with fruit, fresh or canned, and drink it also when my ex was still able to swallow, his food would be pureed. so if eating is difficult for you, maybe drinking or slurping would be an option sweet potatoes are gaining a reputation as a great food, perhaps mashed sweet potatoes would be a good option for you also Pink Joyce IPF 3/06 Pennsylvania Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2008 Report Share Posted December 14, 2008 vegetable soups are good when pureed my son-in-law taught me how to make broccolli soup basically you cook the broccolli in chicken broth and then puree it i have added potatoes to it you can make it with many different kinds of vegetables or combinations of vegetables for egg drop soup, i just beat an egg and add it to the hot soup mixture, and stir it that will give the soup some protein i do not eat cream soups, so i can't tell you about them, but i'm sure you can add milk to the soup for extra nutrients Pink Joyce IPF 3/06 Pennsylvania Donate Life When my ex was diagnosed with ALS and still able to eat, his wife made a milkshake for him to drink at least once a day. the milkshake included milk, ice cream, I think something from the health food store, maybe Whey Protein, and I don't remember what else. it was important to keep his weight and calories up because eventually he would lose the ablilty to eat. He has been on a feeding tube for several years -- nothing by mouth. when i make my yogurt shake, i mix the yogurt with fruit, fresh or canned, and drink it also when my ex was still able to swallow, his food would be pureed. so if eating is difficult for you, maybe drinking or slurping would be an option sweet potatoes are gaining a reputation as a great food, perhaps mashed sweet potatoes would be a good option for you also Pink Joyce IPF 3/06 Pennsylvania Quote Link to comment Share on other sites More sharing options...
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