Guest guest Posted August 31, 2008 Report Share Posted August 31, 2008 Sharon, YOU DO NOT SOUND LIKE A JERK OR STUPID or any other negative thing ok? Let's get that strait right from the start. I don't know if I said anything that gave you the impression I thought that was true but I want to be clear that's not what I think. It's obvious that you're ill and around here we really don't compete to see who's the sickest. We're all sick and we're just trying to support and help each other. Let me just say that if you're weaning yourself off O2 without watching to maintain your sats, please stop. It's dangerous. Your heart won't tolerate low O2 Sharon. Have you given any thought to applying for SSDI? Maybe going back to work isn't the only solution. Or maybe you can do something working remotely on your computer. Just please don't endanger your life by trying to get along without O2 if you need it. I don't know if I've posted this before for you but I also have no insurance coverage and haven't for the last 8 or 9 months. I went to Duke University Medical Center and applied for help through their financial hardship program and it was approved. All my medical care, any tests and doctor visits are being paid for by them. I understand the dilemma when it comes to medication also. If you go to www.needymeds.com they direct you to all the programs sponsored by the various manufacturers that provide free or low cost medications to people like us. I get my Nexium at no charge directly from Astra Zeneca. When I was using Advair I got that at no charge from Glaxo Cline. Lasix and Pottasium are available in generic form which is MUCH cheaper. When I was on those drugs they typically cost me about $25 monthly. Please make sure you ask for the generic form of any drug that gets prescribed for you. I'm not making light of any of your problems or trying to give you easy answers. I just want you to know that I've struggled with similar issues and found some solutions, imperfect, temporary and partial perhaps but solutions nontheless. Please know that I'm thinking of you and hope that you feel supported here. Beth Age 48 Fibrotic NSIP 06/06 UCTD 07/08 Change everything. Love and Forgive O2 Drop> >> >> > Thanks everyone for the engourament re: my appt to the new pul. Anew> question I will be in bed at 4 -5 lpm saturation good heart good thenI> turn over and all hell breaks loose. I drop out of breath etc. I am> sure I am not alone with this but WHY? I guess another question for my> list. They told me being a new patient I am allowed 1 hour in there> with him and you know I will be there all 60 mins. Everyone have anice> day.> > Amy> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2008 Report Share Posted August 31, 2008 Sharon, Please do not feel like that...you are not stupid or a jerk for venting. I as well as everyone here understands. I too have the fear of finding ways to pay for the costly meds and doctors and tests. I am fortunate enough to still be working and having insurance. But even with insurance, I have so much out of pocket expenses that it is a struggle to pay. I have a niece who works for an allergist and she has brought me several samples of some of the meds I take. I have a refill for Advair and a gift card for a free Advair which I will be happy to send to you if they will help you any. Just send me your address and they'll be on the way. Roxanne, 58, South Carolina 2006 Asthma/ PF 2008 IPF/ Sarcoidosis/Gerd Lady Slipper Orchid > > From: Bruce Moreland <brucemoreland@ gmail.com> > Subject: Re: O2 Drop > To: Breathe-Support@ yahoogroups. com > Date: Sunday, August 31, 2008, 11:48 AM > > > > MB > > And sometimes mine takes longer to build back up than > others. However, > typically, I might be on 3-4 lpm and around 93 or so. I get > in the car, > sit, check. Now, still on that I see I've dropped to > maybe 90 or 88 or > so, sitting on 3-4 lpm. I can then just watch it rebuild > and as it does > I turn it down. Then most of the time I can drive without > oxygen > although other times I have to keep a little on. Sometimes > it rebuilds > in a matter of seconds after getting in and other times it > may take 3 or > 4 minutes to completely rebuild. > > > > > > > > Amy, > > > Wow, you brought up something that has been > baffling me also. I'll > > get into bed at night, my concentrator set at 3 > liters. I take my > time, > > get into bed slowly and no matter what I do, it > happens. I'll just get > > myself settled and as you said, " all hell breaks > loose " . My sats drop > > and I start to cough. This will go on for at least 5 > minutes. I'm > short > > of breath, my sats drop into the 80's and I'm > coughing so hard it's > > amazing I don't cough up one or both of my lungs. > > > I suppose it's just that getting settled in > bed is just too much > > activity for 3 liters for me but even that doesn't > really make sense. > It > > all settles down after 5 or 10 minutes and then > I'm fine. > > > Does yours just settle down on it's own or do > you have to get up and > > turn your O2 up? This is so frustrating isn't it? > > > > > > Beth > > > Age 48 Fibrotic NSIP 06/06 UCTD 07/08 > > > > > > Change everything. Love and Forgive > > > > > > > > > > > > > > > > > > O2 Drop > > > > > > > > > Thanks everyone for the engourament re: my appt > to the new pul. A > new > > question I will be in bed at 4 -5 lpm saturation good > heart good then > I > > turn over and all hell breaks loose. I drop out of > breath etc. I am > > sure I am not alone with this but WHY? I guess another > question for my > > list. They told me being a new patient I am allowed 1 > hour in there > > with him and you know I will be there all 60 mins. > Everyone have a > nice > > day. > > > Amy > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2008 Report Share Posted August 31, 2008 are you in chicagosharon From: Bruce Moreland <brucemoreland@ gmail.com>Subject: Re: O2 DropTo: Breathe-Support@ yahoogroups. comDate: Sunday, August 31, 2008, 11:48 AM MBAnd sometimes mine takes longer to build back up than others. However,typically, I might be on 3-4 lpm and around 93 or so. I get in the car,sit, check. Now, still on that I see I've dropped to maybe 90 or 88 orso, sitting on 3-4 lpm. I can then just watch it rebuild and as it doesI turn it down. Then most of the time I can drive without oxygenalthough other times I have to keep a little on. Sometimes it rebuildsin a matter of seconds after getting in and other times it may take 3 or4 minutes to completely rebuild.> >> > Amy,> > Wow, you brought up something that has been baffling me also. I'll> get into bed at night, my concentrator set at 3 liters. I take mytime,> get into bed slowly and no matter what I do, it happens. I'll just get> myself settled and as you said, "all hell breaks loose". My sats drop> and I start to cough. This will go on for at least 5 minutes. I'mshort> of breath, my sats drop into the 80's and I'm coughing so hard it's> amazing I don't cough up one or both of my lungs.> > I suppose it's just that getting settled in bed is just too much> activity for 3 liters for me but even that doesn't really make sense.It> all settles down after 5 or 10 minutes and then I'm fine.> > Does yours just settle down on it's own or do you have to get up and> turn your O2 up? This is so frustrating isn't it?> >> > Beth> > Age 48 Fibrotic NSIP 06/06 UCTD 07/08> >> > Change everything. Love and Forgive> >> >> >> >> >> > O2 Drop> >> >> > Thanks everyone for the engourament re: my appt to the new pul. Anew> question I will be in bed at 4 -5 lpm saturation good heart good thenI> turn over and all hell breaks loose. I drop out of breath etc. I am> sure I am not alone with this but WHY? I guess another question for my> list. They told me being a new patient I am allowed 1 hour in there> with him and you know I will be there all 60 mins. Everyone have anice> day.> > Amy> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2008 Report Share Posted August 31, 2008 Thank You I really appreciate that its Sharon Prendergast 526 e. joliet hwy new lenox ill 60451. again thank you and have a good weekend sharon p> > From: Bruce Moreland <brucemoreland@ gmail.com>> Subject: Re: O2 Drop> To: Breathe-Support@ yahoogroups. com> Date: Sunday, August 31, 2008, 11:48 AM> > > > MB> > And sometimes mine takes longer to build back up than> others. However,> typically, I might be on 3-4 lpm and around 93 or so. I get> in the car,> sit, check. Now, still on that I see I've dropped to> maybe 90 or 88 or> so, sitting on 3-4 lpm. I can then just watch it rebuild> and as it does> I turn it down. Then most of the time I can drive without> oxygen> although other times I have to keep a little on. Sometimes> it rebuilds> in a matter of seconds after getting in and other times it> may take 3 or> 4 minutes to completely rebuild.> > > > >> > > Amy,> > > Wow, you brought up something that has been> baffling me also. I'll> > get into bed at night, my concentrator set at 3> liters. I take my> time,> > get into bed slowly and no matter what I do, it> happens. I'll just get> > myself settled and as you said, "all hell breaks> loose". My sats drop> > and I start to cough. This will go on for at least 5> minutes. I'm> short> > of breath, my sats drop into the 80's and I'm> coughing so hard it's> > amazing I don't cough up one or both of my lungs.> > > I suppose it's just that getting settled in> bed is just too much> > activity for 3 liters for me but even that doesn't> really make sense.> It> > all settles down after 5 or 10 minutes and then> I'm fine.> > > Does yours just settle down on it's own or do> you have to get up and> > turn your O2 up? This is so frustrating isn't it?> > >> > > Beth> > > Age 48 Fibrotic NSIP 06/06 UCTD 07/08> > >> > > Change everything. Love and Forgive> > >> > >> > >> > >> > >> > > O2 Drop> > >> > >> > > Thanks everyone for the engourament re: my appt> to the new pul. A> new> > question I will be in bed at 4 -5 lpm saturation good> heart good then> I> > turn over and all hell breaks loose. I drop out of> breath etc. I am> > sure I am not alone with this but WHY? I guess another> question for my> > list. They told me being a new patient I am allowed 1> hour in there> > with him and you know I will be there all 60 mins.> Everyone have a> nice> > day.> > > Amy> > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2008 Report Share Posted August 31, 2008 no, Lompoc, Calif. O2 Drop> >> >> > Thanks everyone for the engourament re: my appt to the new pul. Anew> question I will be in bed at 4 -5 lpm saturation good heart good thenI> turn over and all hell breaks loose. I drop out of breath etc. I am> sure I am not alone with this but WHY? I guess another question for my> list. They told me being a new patient I am allowed 1 hour in there> with him and you know I will be there all 60 mins. Everyone have anice> day.> > Amy> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2008 Report Share Posted August 31, 2008 Can't imagine this, but here goes...I knew a guy, Jim Fairburn who dated a Prendergast gal in Santa Barbara CA. MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! O2 Drop> >> >> > Thanks everyone for the engourament re: my appt to the new pul. Anew> question I will be in bed at 4 -5 lpm saturation good heart good thenI> turn over and all hell breaks loose. I drop out of breath etc. I am> sure I am not alone with this but WHY? I guess another question for my> list. They told me being a new patient I am allowed 1 hour in there> with him and you know I will be there all 60 mins. Everyone have anice> day.> > Amy> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2008 Report Share Posted August 31, 2008 I know of family members who moved out of state but iam not sure where. The name comes from a small clan in county cork i think . Iam irish only by injection. my mother in laws family came from ther sharon p ph 2008 From: Bruce Moreland <brucemoreland@ gmail.com>Subject: Re: O2 DropTo: Breathe-Support@ yahoogroups. comDate: Sunday, August 31, 2008, 11:48 AM MBAnd sometimes mine takes longer to build back up than others. However,typically, I might be on 3-4 lpm and around 93 or so. I get in the car,sit, check. Now, still on that I see I've dropped to maybe 90 or 88 orso, sitting on 3-4 lpm. I can then just watch it rebuild and as it doesI turn it down. Then most of the time I can drive without oxygenalthough other times I have to keep a little on. Sometimes it rebuildsin a matter of seconds after getting in and other times it may take 3 or4 minutes to completely rebuild.> >> > Amy,> > Wow, you brought up something that has been baffling me also. I'll> get into bed at night, my concentrator set at 3 liters. I take mytime,> get into bed slowly and no matter what I do, it happens. I'll just get> myself settled and as you said, "all hell breaks loose". My sats drop> and I start to cough. This will go on for at least 5 minutes. I'mshort> of breath, my sats drop into the 80's and I'm coughing so hard it's> amazing I don't cough up one or both of my lungs.> > I suppose it's just that getting settled in bed is just too much> activity for 3 liters for me but even that doesn't really make sense.It> all settles down after 5 or 10 minutes and then I'm fine.> > Does yours just settle down on it's own or do you have to get up and> turn your O2 up? This is so frustrating isn't it?> >> > Beth> > Age 48 Fibrotic NSIP 06/06 UCTD 07/08> >> > Change everything. Love and Forgive> >> >> >> >> >> > O2 Drop> >> >> > Thanks everyone for the engourament re: my appt to the new pul. Anew> question I will be in bed at 4 -5 lpm saturation good heart good thenI> turn over and all hell breaks loose. I drop out of breath etc. I am> sure I am not alone with this but WHY? I guess another question for my> list. They told me being a new patient I am allowed 1 hour in there> with him and you know I will be there all 60 mins. Everyone have anice> day.> > Amy> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2008 Report Share Posted August 31, 2008 i think there is or was a singer by that namePink Joyce IPF 3/06 Pennslvania From: Bruce Moreland <brucemoreland@ gmail.com>Subject: Re: O2 DropTo: Breathe-Support@ yahoogroups. comDate: Sunday, August 31, 2008, 11:48 AM MBAnd sometimes mine takes longer to build back up than others. However,typically, I might be on 3-4 lpm and around 93 or so. I get in the car,sit, check. Now, still on that I see I've dropped to maybe 90 or 88 orso, sitting on 3-4 lpm. I can then just watch it rebuild and as it doesI turn it down. Then most of the time I can drive without oxygenalthough other times I have to keep a little on. Sometimes it rebuildsin a matter of seconds after getting in and other times it may take 3 or4 minutes to completely rebuild.> >> > Amy,> > Wow, you brought up something that has been baffling me also. I'll> get into bed at night, my concentrator set at 3 liters. I take mytime,> get into bed slowly and no matter what I do, it happens. I'll just get> myself settled and as you said, "all hell breaks loose". My sats drop> and I start to cough. This will go on for at least 5 minutes. I'mshort> of breath, my sats drop into the 80's and I'm coughing so hard it's> amazing I don't cough up one or both of my lungs.> > I suppose it's just that getting settled in bed is just too much> activity for 3 liters for me but even that doesn't really make sense.It> all settles down after 5 or 10 minutes and then I'm fine.> > Does yours just settle down on it's own or do you have to get up and> turn your O2 up? This is so frustrating isn't it?> >> > Beth> > Age 48 Fibrotic NSIP 06/06 UCTD 07/08> >> > Change everything. Love and Forgive> >> >> >> >> >> > O2 Drop> >> >> > Thanks everyone for the engourament re: my appt to the new pul. Anew> question I will be in bed at 4 -5 lpm saturation good heart good thenI> turn over and all hell breaks loose. I drop out of breath etc. I am> sure I am not alone with this but WHY? I guess another question for my> list. They told me being a new patient I am allowed 1 hour in there> with him and you know I will be there all 60 mins. Everyone have anice> day.> > Amy> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2008 Report Share Posted September 1, 2008 that's close, very close, and i think that's the name i've been thinking of. thanks ken O2 Drop> >> >> > Thanks everyone for the engourament re: my appt to the new pul. Anew> question I will be in bed at 4 -5 lpm saturation good heart good thenI> turn over and all hell breaks loose. I drop out of breath etc. I am> sure I am not alone with this but WHY? I guess another question for my> list. They told me being a new patient I am allowed 1 hour in there> with him and you know I will be there all 60 mins. Everyone have anice> day.> > Amy> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2008 Report Share Posted September 1, 2008 About stats dropping when someone sits down, gets in the car, rolls over... I once read that for some with PF, it can help to eat more frequent, smaller meals so as not to compress the lungs with bigger meals. Following that train of thought, maybe the simple acts of sitting, etc., cause enough of a momentary compression of the lungs to affect the stats, which then return to more expected levels when the lungs adjust to the new position. Or, am I just full of hot air...heh, heh? Dale Snellbaker, 67, NC, IPF 7/08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2008 Report Share Posted September 1, 2008 I think it was Freddie Pendergast.. singer.. Can't remember his music though. Love and Prayers, Peggy   IPF  2004,  Florida"Worry looks around, Sorry looks back,  Faith looks up." that's close, very close, and i think that's the name i've been thinking of.thanks ken O2 Drop> >> >> > Thanks everyone for the engourament re: my appt to the new pul. Anew> question I will be in bed at 4 -5 lpm saturation good heart good thenI> turn over and all hell breaks loose. I drop out of breath etc. I am> sure I am not alone with this but WHY? I guess another question for my> list. They told me being a new patient I am allowed 1 hour in there> with him and you know I will be there all 60 mins. Everyone have anice> day.> > Amy> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2008 Report Share Posted September 1, 2008 YES, his name is Teddy Pendergast From: Bruce Moreland <brucemoreland@ gmail.com>Subject: Re: O2 DropTo: Breathe-Support@ yahoogroups. comDate: Sunday, August 31, 2008, 11:48 AM MBAnd sometimes mine takes longer to build back up than others. However,typically, I might be on 3-4 lpm and around 93 or so. I get in the car,sit, check. Now, still on that I see I've dropped to maybe 90 or 88 orso, sitting on 3-4 lpm. I can then just watch it rebuild and as it doesI turn it down. Then most of the time I can drive without oxygenalthough other times I have to keep a little on. Sometimes it rebuildsin a matter of seconds after getting in and other times it may take 3 or4 minutes to completely rebuild.> >> > Amy,> > Wow, you brought up something that has been baffling me also. I'll> get into bed at night, my concentrator set at 3 liters. I take mytime,> get into bed slowly and no matter what I do, it happens. I'll just get> myself settled and as you said, "all hell breaks loose". My sats drop> and I start to cough. This will go on for at least 5 minutes. I'mshort> of breath, my sats drop into the 80's and I'm coughing so hard it's> amazing I don't cough up one or both of my lungs.> > I suppose it's just that getting settled in bed is just too much> activity for 3 liters for me but even that doesn't really make sense.It> all settles down after 5 or 10 minutes and then I'm fine.> > Does yours just settle down on it's own or do you have to get up and> turn your O2 up? This is so frustrating isn't it?> >> > Beth> > Age 48 Fibrotic NSIP 06/06 UCTD 07/08> >> > Change everything. Love and Forgive> >> >> >> >> >> > O2 Drop> >> >> > Thanks everyone for the engourament re: my appt to the new pul. Anew> question I will be in bed at 4 -5 lpm saturation good heart good thenI> turn over and all hell breaks loose. I drop out of breath etc. I am> sure I am not alone with this but WHY? I guess another question for my> list. They told me being a new patient I am allowed 1 hour in there> with him and you know I will be there all 60 mins. Everyone have anice> day.> > Amy> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2008 Report Share Posted September 1, 2008 Yes it is Teddy. There is a girl at work who is his cousin. He is originally from the Philly area. Tom from PA > > > > > > Amy, > > > Wow, you brought up something that has been baffling me also. I'll > > get into bed at night, my concentrator set at 3 liters. I take my > time, > > get into bed slowly and no matter what I do, it happens. I'll just get > > myself settled and as you said, " all hell breaks loose " . My sats drop > > and I start to cough. This will go on for at least 5 minutes. I'm > short > > of breath, my sats drop into the 80's and I'm coughing so hard it's > > amazing I don't cough up one or both of my lungs. > > > I suppose it's just that getting settled in bed is just too much > > activity for 3 liters for me but even that doesn't really make sense. > It > > all settles down after 5 or 10 minutes and then I'm fine. > > > Does yours just settle down on it's own or do you have to get up and > > turn your O2 up? This is so frustrating isn't it? > > > > > > Beth > > > Age 48 Fibrotic NSIP 06/06 UCTD 07/08 > > > > > > Change everything. Love and Forgive > > > > > > > > > > > > > > > > > > O2 Drop > > > > > > > > > Thanks everyone for the engourament re: my appt to the new pul. A > new > > question I will be in bed at 4 -5 lpm saturation good heart good then > I > > turn over and all hell breaks loose. I drop out of breath etc. I am > > sure I am not alone with this but WHY? I guess another question for my > > list. They told me being a new patient I am allowed 1 hour in there > > with him and you know I will be there all 60 mins. Everyone have a > nice > > day. > > > Amy > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2008 Report Share Posted September 1, 2008 Dale I think the positioning has something to do with it. I find even posture when sitting affects it. > > About stats dropping when someone sits down, gets in the car, rolls > over... I once read that for some with PF, it can help to eat more > frequent, smaller meals so as not to compress the lungs with bigger > meals. Following that train of thought, maybe the simple acts of > sitting, etc., cause enough of a momentary compression of the lungs to > affect the stats, which then return to more expected levels when the > lungs adjust to the new position. Or, am I just full of hot air...heh, > heh? > > Dale Snellbaker, 67, NC, IPF 7/08 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2008 Report Share Posted September 1, 2008 Also if you have extra weight around the middle pushes the fat up into the diaphram or however you spell it. My doc said sats lower anyway when moving around naturally then return at rest just like a heart rate sharon p ph 2008 Subject: Re: SharonTo: Breathe-Support Date: Monday, September 1, 2008, 10:43 AM DaleI think the positioning has something to do with it. I find even posturewhen sitting affects it.>> About stats dropping when someone sits down, gets in the car, rolls> over... I once read that for some with PF, it can help to eat more> frequent, smaller meals so as not to compress the lungs with bigger> meals. Following that train of thought, maybe the simple acts of> sitting, etc., cause enough of a momentary compression of the lungs to> affect the stats, which then return to more expected levels when the> lungs adjust to the new position. Or, am I just full of hot air...heh,> heh?>> Dale Snellbaker, 67, NC, IPF 7/08> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2008 Report Share Posted September 1, 2008 It's a small world after all... I too have ancestors who originate in County Cork and I'm realizing that is not your maiden name. The world doesn't get so small tho' as to meet someone we already know, on the board. Wouldn't that be something? Sad of course but what a connection. Has anyone out there ever met someone on the board they knew? MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! O2 Drop> >> >> > Thanks everyone for the engourament re: my appt to the new pul. Anew> question I will be in bed at 4 -5 lpm saturation good heart good thenI> turn over and all hell breaks loose. I drop out of breath etc. I am> sure I am not alone with this but WHY? I guess another question for my> list. They told me being a new patient I am allowed 1 hour in there> with him and you know I will be there all 60 mins. Everyone have anice> day.> > Amy> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2008 Report Share Posted September 1, 2008 My husbands sweet mom was a collins. maybe someone knows of the name. From: Bruce Moreland <brucemoreland@ gmail.com>Subject: Re: O2 DropTo: Breathe-Support@ yahoogroups. comDate: Sunday, August 31, 2008, 11:48 AM MBAnd sometimes mine takes longer to build back up than others. However,typically, I might be on 3-4 lpm and around 93 or so. I get in the car,sit, check. Now, still on that I see I've dropped to maybe 90 or 88 orso, sitting on 3-4 lpm. I can then just watch it rebuild and as it doesI turn it down. Then most of the time I can drive without oxygenalthough other times I have to keep a little on. Sometimes it rebuildsin a matter of seconds after getting in and other times it may take 3 or4 minutes to completely rebuild.> >> > Amy,> > Wow, you brought up something that has been baffling me also. I'll> get into bed at night, my concentrator set at 3 liters. I take mytime,> get into bed slowly and no matter what I do, it happens. I'll just get> myself settled and as you said, "all hell breaks loose". My sats drop> and I start to cough. This will go on for at least 5 minutes. I'mshort> of breath, my sats drop into the 80's and I'm coughing so hard it's> amazing I don't cough up one or both of my lungs.> > I suppose it's just that getting settled in bed is just too much> activity for 3 liters for me but even that doesn't really make sense.It> all settles down after 5 or 10 minutes and then I'm fine.> > Does yours just settle down on it's own or do you have to get up and> turn your O2 up? This is so frustrating isn't it?> >> > Beth> > Age 48 Fibrotic NSIP 06/06 UCTD 07/08> >> > Change everything. Love and Forgive> >> >> >> >> >> > O2 Drop> >> >> > Thanks everyone for the engourament re: my appt to the new pul. Anew> question I will be in bed at 4 -5 lpm saturation good heart good thenI> turn over and all hell breaks loose. I drop out of breath etc. I am> sure I am not alone with this but WHY? I guess another question for my> list. They told me being a new patient I am allowed 1 hour in there> with him and you know I will be there all 60 mins. Everyone have anice> day.> > Amy> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2008 Report Share Posted September 1, 2008 Dale You are on the right track. I cannot seem to eat enough to keep me going for more than a couple hours. For that reason I do eat every two or three hours, smaller amounts. It seems to help until morning when I wake up and am hungry but have to get up to get some food. I watch what I eat to try and get the energy and nutrition I need. The problem is that when being this weak it is hard to gain weight and muscle to strengthen my body. My stats do drop quickly when I change what I am doing and if I get a handle on this I will let you know. I am also looking for food suppliments that will help with the protein, iron and other nutriants I need. Fay IPF 06/06 IL Re: Sharon About stats dropping when someone sits down, gets in the car, rolls over... I once read that for some with PF, it can help to eat more frequent, smaller meals so as not to compress the lungs with bigger meals. Following that train of thought, maybe the simple acts of sitting, etc., cause enough of a momentary compression of the lungs to affect the stats, which then return to more expected levels when the lungs adjust to the new position. Or, am I just full of hot air...heh, heh? Dale Snellbaker, 67, NC, IPF 7/08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2008 Report Share Posted September 1, 2008 Tom where in PA are you from? I'm from philly, but now i live in LanghornePink Joyce IPF 3/06 Pennslvania Subject: Re: SharonTo: Breathe-Support Date: Monday, September 1, 2008, 11:38 AM Yes it is Teddy. There is a girl at work who is his cousin.He is originally from the Philly area.Tom from PA> > >> > > Amy,> > > Wow, you brought up something that has been baffling me also. I'll> > get into bed at night, my concentrator set at 3 liters. I take my> time,> > get into bed slowly and no matter what I do, it happens. I'll just get> > myself settled and as you said, "all hell breaks loose". My sats drop> > and I start to cough. This will go on for at least 5 minutes. I'm> short> > of breath, my sats drop into the 80's and I'm coughing so hard it's> > amazing I don't cough up one or both of my lungs.> > > I suppose it's just that getting settled in bed is just too much> > activity for 3 liters for me but even that doesn't really make sense.> It> > all settles down after 5 or 10 minutes and then I'm fine.> > > Does yours just settle down on it's own or do you have to get up and> > turn your O2 up? This is so frustrating isn't it?> > >> > > Beth> > > Age 48 Fibrotic NSIP 06/06 UCTD 07/08> > >> > > Change everything. Love and Forgive> > >> > >> > >> > >> > >> > > O2 Drop> > >> > >> > > Thanks everyone for the engourament re: my appt to the new pul. A> new> > question I will be in bed at 4 -5 lpm saturation good heart good then> I> > turn over and all hell breaks loose. I drop out of breath etc. I am> > sure I am not alone with this but WHY? I guess another question for my> > list. They told me being a new patient I am allowed 1 hour in there> > with him and you know I will be there all 60 mins. Everyone have a> nice> > day.> > > Amy> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2008 Report Share Posted September 1, 2008 Joyce, I live in New Hanover Township, Gilbertsville Zip Code. It is just outside of Pottstown. Actually when you ask the question of where am I from, I should say, Gilbertsville, PA via Dunedin, FL, via Nashville, TN, via Syracuse, NY (birth place) I have Adult Onset Still's Disease (DX 05/05 symptoms 01/04) resulting in my PF (DX 5/08). Real bummer! Breathing not too bad at the moment, but the arthralgia has kicked in and ankles are pretty inflammed. We will see how well I walk tomorrow. I am on Remicade for the AOSD and has not been controlling the symptoms for the full 6 weeks. Glad to " meet " you, neighbor. Tom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2008 Report Share Posted September 2, 2008 Tom is Pottstown near Valley Forge or King of Prussia? If so, maybe we could meet at K of P mall. It's always exciting to meet someone from the on-line group in person. Langhorne is in Bucks County. I'm right off of Rt 1 and I-95. Takes about 5 minutes to get to PA Turnpike. I never heard of Still's Disease or arthralgia (having something to do with arthritis?)Pink Joyce IPF 3/06 Pennslvania Subject: Re: SharonTo: Breathe-Support Date: Monday, September 1, 2008, 7:07 PM Joyce,I live in New Hanover Township, Gilbertsville Zip Code. It is just outside of Pottstown.Actually when you ask the question of where am I from, I should say, Gilbertsville, PA via Dunedin, FL, via Nashville, TN, via Syracuse, NY (birth place)I have Adult Onset Still's Disease (DX 05/05 symptoms 01/04) resulting in my PF (DX 5/08). Real bummer!Breathing not too bad at the moment, but the arthralgia has kicked in and ankles are pretty inflammed. We will see how well I walk tomorrow. I am on Remicade for the AOSD and has not been controlling the symptoms for the full 6 weeks. Glad to "meet" you, neighbor.Tom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2008 Report Share Posted September 2, 2008 , The bests source of protein I've found, via an author friend who researched it, is Vegan Rice Protein by NutriBiotic, which I found in a local "fresh market" type of food store. Dale 67, NC, IPF 7/08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2008 Report Share Posted September 9, 2008 Hi Sharon Did you get the express mail I sent you ? Roxanne, 58, South Carolina 2006 Asthma/ PF 2008 IPF/ Sarcoidosis/Gerd Lady Slipper Orchid > > > > > > > Hi Peggy! > I have my own concentrator, plus my own portable > concentrator, and one E-Tank. We will probably leave maybe > 4 am and will try to get there around noon. When is MB > ariving? And whatever happened to that Hurricane > phine? I haven't heard anything about what > happened to her. > Toodles > Jane UIP/IPF 12/1998 Dalton, Georgia aka > pianolady_musicgirl > > > > > > Hey Missy Jane, How are your plans doing? When do > y'all plan on > > leaving and getting here. > > We are about 6 to 8 from Atlanta. > > I am so glad the storm isn't coming here. and that > you and MB are. > > told the Apria guy > > today that Y'all were coming. Do you need them to > bring a > > concentrator for night? > > Just call your provider and they will bring them no > problem. > > Beth has her own she is a " Have concentrator > will travel.. " > > I will have plenty e tanks. I have 24. so we will be > fine. > > > > > > > > > >  > > > > Love & Prayers, Peggy > > Florida, IPF/UIP > > > > " I believe that friends are quiet angels who lift > us to our feet, > > when our wings have trouble remembering how to > fly. " > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2008 Report Share Posted September 9, 2008 Roxanne I live on lady slipper lane do you actually have lady slipper orchids if so i would like to see a picture of them when we bought the house, we knew that all of the streets are named after flowers so i looked up lady slipper unfortunately it is one of the more expensive plants, so i didn't buy one besides, the more i spend on a plant, the faster it dies lol Pink Joyce IPF 3/06 Pennslvania > > > > > > > Hi Peggy!> I have my own concentrator, plus my own portable> concentrator, and one E-Tank. We will probably leave maybe> 4 am and will try to get there around noon. When is MB> ariving? And whatever happened to that Hurricane> phine? I haven't heard anything about what> happened to her.> Toodles> Jane UIP/IPF 12/1998 Dalton, Georgia aka> pianolady_musicgirl> > > >> > Hey Missy Jane, How are your plans doing? When do> y'all plan on > > leaving and getting here.> > We are about 6 to 8 from Atlanta.> > I am so glad the storm isn't coming here. and that> you and MB are. > > told the Apria guy> > today that Y'all were coming. Do you need them to> bring a > > concentrator for night?> > Just call your provider and they will bring them no> problem.> > Beth has her own she is a "Have concentrator> will travel.."> > I will have plenty e tanks. I have 24. so we will be> fine.> > > > > > > > > > > > > > Love & Prayers, Peggy> > Florida, IPF/UIP> > > > "I believe that friends are quiet angels who lift> us to our feet,> > when our wings have trouble remembering how to> fly."> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2008 Report Share Posted September 9, 2008 Hi Pink Joyce, I raised orchids for many years while living in Florida. When we moved to SC about 10 years ago, I dragged them all up here and had a greenhouse built for them and continued to spend hours and hours petting and talking to them. Then 2 years ago, my job sent me to ton and kept me there for 16 months leaving my poor babies in the care of part timers who didn't have the interest that I did. By the time I returned home, I was sick and didn't have the desire or energy to continue to try to bring them back from the depths. I gave them away. Over the years, I had a few lady slippers but never could keep these healthy. They have different requirements than most of the others, so I kept my collection mainly phalenopsis, oncidium, vandas, and the standard corsage orchid--the cattleya. I have many photos and I'll try to dig them up and post them soon. Roxanne, 58, South Carolina 2006 Asthma/ PF 2008 IPF/ Sarcoidosis/Gerd Lady Slipper Orchid > > > > > > > > > > > > > > Hi Peggy! > > I have my own concentrator, plus my own portable > > concentrator, and one E-Tank. We will probably leave > maybe > > 4 am and will try to get there around noon. When is > MB > > ariving? And whatever happened to that Hurricane > > phine? I haven't heard anything about what > > happened to her. > > Toodles > > Jane UIP/IPF 12/1998 Dalton, Georgia aka > > pianolady_musicgirl > > > > > > > > > > Hey Missy Jane, How are your plans doing? When do > > y'all plan on > > > leaving and getting here. > > > We are about 6 to 8 from Atlanta. > > > I am so glad the storm isn't coming here. and > that > > you and MB are. > > > told the Apria guy > > > today that Y'all were coming. Do you need > them to > > bring a > > > concentrator for night? > > > Just call your provider and they will bring them > no > > problem. > > > Beth has her own she is a " Have > concentrator > > will travel.. " > > > I will have plenty e tanks. I have 24. so we will > be > > fine. > > > > > > > > > > > > > > >  > > > > > > Love & Prayers, Peggy > > > Florida, IPF/UIP > > > > > > " I believe that friends are quiet angels who > lift > > us to our feet, > > > when our wings have trouble remembering how to > > fly. " > > > Quote Link to comment Share on other sites More sharing options...
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