Guest guest Posted November 2, 2008 Report Share Posted November 2, 2008 Thanks for the explanation MB... As I said, I may have used the wrong "word" but you were clear... I think the point made to me is, if my Rx is 2-3 then do not "self-treat" and keep turning up to 5,6 7, levels if I'm SOB. Obviously, if a Dr has Rx higher levels then of course that's what we use. Sorry if I was confusing. I will tell my pulmonologist next Monday when I see him (after 5 months) that my 2L does not seem enough at times. I do turn up to 3 but not beyond. If I felt like I still couldn't breathe I'd call right away. MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! THANKS, everyone for your thoughts and posts.... I feel terrible tonight. Went to daughters for the day. Yesterday I made some pumpkin pie, (splenda) fantastic tasting pie, (no crust), and each day now am feeling worse. I am calling pulmo in a.m. to talk again. I am down to 12 1/2 mg pred. for 2 days now. My weight is still going up, and I am not breathing well at all. Hard to get my breath, am never any lower than #5 sitting. My sat go down fast if it is not set right for Me.I don't know how long I will be here, but I am not expecting much anymore, am not depressed, just am tired of fighting for a good breath. Seems I just can't walk and breath at the same time.I LOVE YOU THIS DAYMARY LOU - RICHMOND VAIPF - 02 (AND HOLDING I THINK) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2008 Report Share Posted November 2, 2008 Lou Do you have an oximeter? I ask because " seems " isn't a good word as in does not seem to be enough. With measurements of an oximeter then one can say at 2 lpm if I walk I drop below 90% or I drop to 85% but with 3 lpm I stay at 90%. SOB isn't a good means of determining. I do things sometimes that make me very SOB but my sats are fine. On the other hand I can do things where I feel just fine but I look and my sats are dropping and I require more oxygen. There are also certain things you'll find you just can't do at any rate of flow. With PF it often varies greatly by the activity. That's another difference from COPD where the variations are much less. > > From: Beth mbmurtha (AT) yahoo (DOT) com> > Subject: Re: THANKS, everyone for your thoughts and posts.... > To: Breathe-Support@ yahoogroups. com > Date: Sunday, November 2, 2008, 5:15 PM > > > Lou, > I'm sorry that you are feeling so terrible. I'm glad that you are talking to your doctor tomorrow. Please ask him to explain why you cannot use more than 5 liters of O2. What does he want you to do if your sats are below 90 with 5 liters? These are reasonable questions and you need answers that you can understand. > Please save a piece of that pie for me! You are in my prayers dear lady! > > Beth-Moderator > Fibrotic NSIP 06/06 UCTD 06/08 > > " Take chances, make mistakes and get messy! " > Miss Frizzle > > > > > > ---------------------------------------------------------------------- > From: Lou mlpretired (AT) aol (DOT) com> > To: Breathe-Support@ yahoogroups. com > Sent: Sunday, November 2, 2008 5:00:58 PM > Subject: THANKS, everyone for your thoughts and posts.... > > > I feel terrible tonight. Went to daughters for the day. Yesterday I > made some pumpkin pie, (splenda) fantastic tasting pie, (no crust), and > each day now am feeling worse. I am calling pulmo in a.m. to talk > again. I am down to 12 1/2 mg pred. for 2 days now. My weight is > still going up, and I am not breathing well at all. Hard to get my > breath, am never any lower than #5 sitting. My sat go down fast if it > is not set right for Me. > > I don't know how long I will be here, but I am not expecting much > anymore, am not depressed, just am tired of fighting for a good > breath. Seems I just can't walk and breath at the same time. > > I LOVE YOU THIS DAY > MARY LOU - RICHMOND VA > IPF - 02 (AND HOLDING I THINK) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2008 Report Share Posted November 2, 2008 Bruce ... I agree, an oximeter is the only way to be sure. To newbies: www.portablenebs.com is where an oximeter can be purchased. It's FDA approved and many of us, including me, have one of these... The price is $65. Waaaaaaaaaaay less $$ then the better known names and works as well. MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! THANKS, everyone for your thoughts andposts....>>> I feel terrible tonight. Went to daughters for the day. Yesterday I> made some pumpkin pie, (splenda) fantastic tasting pie, (no crust),and> each day now am feeling worse. I am calling pulmo in a.m. to talk> again. I am down to 12 1/2 mg pred. for 2 days now. My weight is> still going up, and I am not breathing well at all. Hard to get my> breath, am never any lower than #5 sitting. My sat go down fast if it> is not set right for Me.>> I don't know how long I will be here, but I am not expecting much> anymore, am not depressed, just am tired of fighting for a good> breath. Seems I just can't walk and breath at the same time.>> I LOVE YOU THIS DAY> MARY LOU - RICHMOND VA> IPF - 02 (AND HOLDING I THINK)> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2008 Report Share Posted November 2, 2008 Thanks for posting that Sher. I had intended to and forgot. That's the best bargain for us. And knowing our sats really does help us make intelligent choices and also to report accurate information to our doctors! Thanks again! Beth-Moderator Fibrotic NSIP 06/06 UCTD 06/08 "Take chances, make mistakes and get messy!" Miss Frizzle To: Breathe-Support Sent: Sunday, November 2, 2008 7:06:33 PMSubject: Re: Re: Oxygen use Bruce ... I agree, an oximeter is the only way to be sure. To newbies: www.portablenebs. com is where an oximeter can be purchased. It's FDA approved and many of us, including me, have one of these... The price is $65. Waaaaaaaaaaay less $$ then the better known names and works as well. MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! THANKS, everyone for your thoughts andposts....>>> I feel terrible tonight. Went to daughters for the day. Yesterday I> made some pumpkin pie, (splenda) fantastic tasting pie, (no crust),and> each day now am feeling worse. I am calling pulmo in a.m. to talk> again. I am down to 12 1/2 mg pred. for 2 days now. My weight is> still going up, and I am not breathing well at all. Hard to get my> breath, am never any lower than #5 sitting. My sat go down fast if it> is not set right for Me.>> I don't know how long I will be here, but I am not expecting much> anymore, am not depressed, just am tired of fighting for a good> breath. Seems I just can't walk and breath at the same time.>> I LOVE YOU THIS DAY> MARY LOU - RICHMOND VA> IPF - 02 (AND HOLDING I THINK)> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2008 Report Share Posted November 2, 2008 Thanks for the explanation Beth The highest i go is 4lpm, either pulse or continuous. Sometimes I forget to turn it back down. Interesting how when inactive i can use 2 lpm, and then need more as activity starts. I wonder why that happens.Pink Joyce IPF 3/06 Pennsylvania From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Re: THANKS, everyone for your thoughts and posts....To: Breathe-Support@ yahoogroups. comDate: Sunday, November 2, 2008, 5:15 PM Lou, I'm sorry that you are feeling so terrible. I'm glad that you are talking to your doctor tomorrow. Please ask him to explain why you cannot use more than 5 liters of O2. What does he want you to do if your sats are below 90 with 5 liters? These are reasonable questions and you need answers that you can understand. Please save a piece of that pie for me! You are in my prayers dear lady! Beth-Moderator Fibrotic NSIP 06/06 UCTD 06/08 "Take chances, make mistakes and get messy!" Miss Frizzle From: Lou <mlpretired (AT) aol (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sunday, November 2, 2008 5:00:58 PMSubject: THANKS, everyone for your thoughts and posts.... I feel terrible tonight. Went to daughters for the day. Yesterday I made some pumpkin pie, (splenda) fantastic tasting pie, (no crust), and each day now am feeling worse. I am calling pulmo in a.m. to talk again. I am down to 12 1/2 mg pred. for 2 days now. My weight is still going up, and I am not breathing well at all. Hard to get my breath, am never any lower than #5 sitting. My sat go down fast if it is not set right for Me.I don't know how long I will be here, but I am not expecting much anymore, am not depressed, just am tired of fighting for a good breath. Seems I just can't walk and breath at the same time.I LOVE YOU THIS DAYMARY LOU - RICHMOND VAIPF - 02 (AND HOLDING I THINK) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2008 Report Share Posted November 2, 2008 MB I'll state an opinion that is controversial too-If your pulmonologist doesn't like you having an oximeter, get a new pulmonologist. My pulmonologist labeled that attitude in other pulmonologists as " proprietary " and showed almost disgust as he did so. I've seen four pulmonologists in total and all are very in favor of it. The reality is that its the only way to know. Doctors familiar with the disease realize that they can't know what happens from their office. If you have blood pressure problems, doctors say get equipment to check it, if you have a cold, you check your fever, if you have diabetes, you check your levels. The big difference in oxygen saturation is that you can also, with doctor's approvals, take immediate steps to correct it. My pulmonologist doesn't tell me how much to use. He waits for me to tell him what I'm using and what my current requirements are. Who would have ever thought MB needed 12 lpm on the treadmill? No one except someone reading an oximeter while she tried. > > > > From: Beth mbmurtha (AT) yahoo (DOT) com> > > Subject: Re: THANKS, everyone for your thoughts and > posts.... > > To: Breathe-Support@ yahoogroups. com > > Date: Sunday, November 2, 2008, 5:15 PM > > > > > > Lou, > > I'm sorry that you are feeling so terrible. I'm glad that you are > talking to your doctor tomorrow. Please ask him to explain why you > cannot use more than 5 liters of O2. What does he want you to do if your > sats are below 90 with 5 liters? These are reasonable questions and you > need answers that you can understand. > > Please save a piece of that pie for me! You are in my prayers dear > lady! > > > > Beth-Moderator > > Fibrotic NSIP 06/06 UCTD 06/08 > > > > " Take chances, make mistakes and get messy! " > > Miss Frizzle > > > > > > > > > > > > ------------ --------- --------- --------- --------- --------- - > > From: Lou mlpretired (AT) aol (DOT) com> > > To: Breathe-Support@ yahoogroups. com > > Sent: Sunday, November 2, 2008 5:00:58 PM > > Subject: THANKS, everyone for your thoughts and > posts.... > > > > > > I feel terrible tonight. Went to daughters for the day. Yesterday I > > made some pumpkin pie, (splenda) fantastic tasting pie, (no crust), > and > > each day now am feeling worse. I am calling pulmo in a.m. to talk > > again. I am down to 12 1/2 mg pred. for 2 days now. My weight is > > still going up, and I am not breathing well at all. Hard to get my > > breath, am never any lower than #5 sitting. My sat go down fast if it > > is not set right for Me. > > > > I don't know how long I will be here, but I am not expecting much > > anymore, am not depressed, just am tired of fighting for a good > > breath. Seems I just can't walk and breath at the same time. > > > > I LOVE YOU THIS DAY > > MARY LOU - RICHMOND VA > > IPF - 02 (AND HOLDING I THINK) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2008 Report Share Posted November 2, 2008 Pink Thats normal with our disease. Some are more extreme than others. I can sit on the sofa with no oxygen. I require 2 lpm if I move slowly around the house and while asleep. I require 3 lpm if I do anything around the house. 4 lpm if I walk fast or do anything more. 5 lpm on the treadmill and the only reason I don't require more is that my balance isn't good enough for me to walk faster. MB will probably explain it medically but in simple terms when we use more we need more. Our lungs are restricted as to what they can supply. Activity takes oxygen. Our body can only get oxygen from our respiratory system when we do something aerobic and does get some from our muscles when we do anaerobic activities. Most of us get oxygen from our lungs and from the hoses in our noses. We can't turn our lungs up but we sure can adjust whats coming into our nose. Wouldn't it be great if our lungs had a little dial like that we could just turn up when needed? lol > > From: Beth mbmurtha (AT) yahoo (DOT) com> > Subject: Re: THANKS, everyone for your thoughts and posts.... > To: Breathe-Support@ yahoogroups. com > Date: Sunday, November 2, 2008, 5:15 PM > > > > > > > > Lou, > I'm sorry that you are feeling so terrible. I'm glad that you are talking to your doctor tomorrow. Please ask him to explain why you cannot use more than 5 liters of O2. What does he want you to do if your sats are below 90 with 5 liters? These are reasonable questions and you need answers that you can understand. > Please save a piece of that pie for me! You are in my prayers dear lady! > > Beth-Moderator > Fibrotic NSIP 06/06 UCTD 06/08 > > " Take chances, make mistakes and get messy! " > Miss Frizzle > > > > > > > From: Lou mlpretired (AT) aol (DOT) com> > To: Breathe-Support@ yahoogroups. com > Sent: Sunday, November 2, 2008 5:00:58 PM > Subject: THANKS, everyone for your thoughts and posts.... > > > > I feel terrible tonight. Went to daughters for the day. Yesterday I > made some pumpkin pie, (splenda) fantastic tasting pie, (no crust), and > each day now am feeling worse. I am calling pulmo in a.m. to talk > again. I am down to 12 1/2 mg pred. for 2 days now. My weight is > still going up, and I am not breathing well at all. Hard to get my > breath, am never any lower than #5 sitting. My sat go down fast if it > is not set right for Me. > > I don't know how long I will be here, but I am not expecting much > anymore, am not depressed, just am tired of fighting for a good > breath. Seems I just can't walk and breath at the same time. > > I LOVE YOU THIS DAY > MARY LOU - RICHMOND VA > IPF - 02 (AND HOLDING I THINK) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2008 Report Share Posted November 2, 2008 Bruce, You bring up a good point and I tend to agree with you. I've never encountered an anti-oxymeter attitude from a physician and if I did, I'd be very taken aback. The concept of not being "allowed" to check our own sats is absurd. Would a doctor prescribe a standard dose of insulin for a diabetic and forbid them to use a glucometer? It even sounds silly. The amount of O2 I need on the treadmill still astonishes me. That's the value of rehab and the careful monitoring that's done there. I would have been very hesitant to go that high without the experience of Dr. Pellicone standing next to the treadmill telling me we needed to use "whatever it takes for you to exercise safely". I have to say I'm hoping to do rehab again after the holidays. It's hard work but it does help! Beth-Moderator Fibrotic NSIP 06/06 UCTD 06/08 "Take chances, make mistakes and get messy!" Miss Frizzle To: Breathe-Support Sent: Sunday, November 2, 2008 7:40:34 PMSubject: Re: Oxygen use MBI'll state an opinion that is controversial too-If your pulmonologistdoesn't like you having an oximeter, get a new pulmonologist. Mypulmonologist labeled that attitude in other pulmonologists as"proprietary" and showed almost disgust as he did so. I've seen fourpulmonologists in total and all are very in favor of it. The reality isthat its the only way to know. Doctors familiar with the disease realizethat they can't know what happens from their office. If you have bloodpressure problems, doctors say get equipment to check it, if you have acold, you check your fever, if you have diabetes, you check your levels.The big difference in oxygen saturation is that you can also, withdoctor's approvals, take immediate steps to correct it. My pulmonologistdoesn't tell me how much to use. He waits for me to tell him what I'musing and what my current requirements are. Who would have ever thoughtMB needed 12 lpm on the treadmill? No one except someone reading anoximeter while she tried.> >> > From: Beth mbmurtha (AT) yahoo (DOT) com>> > Subject: Re: THANKS, everyone for your thoughtsand> posts....> > To: Breathe-Support@ yahoogroups. com> > Date: Sunday, November 2, 2008, 5:15 PM> >> >> > Lou,> > I'm sorry that you are feeling so terrible. I'm glad that you are> talking to your doctor tomorrow. Please ask him to explain why you> cannot use more than 5 liters of O2. What does he want you to do ifyour> sats are below 90 with 5 liters? These are reasonable questions andyou> need answers that you can understand.> > Please save a piece of that pie for me! You are in my prayers dear> lady!> >> > Beth-Moderator> > Fibrotic NSIP 06/06 UCTD 06/08> >> > "Take chances, make mistakes and get messy!"> > Miss Frizzle> >> >> >> >> >> > ------------ --------- --------- --------- --------- --------- -> > From: Lou mlpretired (AT) aol (DOT) com>> > To: Breathe-Support@ yahoogroups. com> > Sent: Sunday, November 2, 2008 5:00:58 PM> > Subject: THANKS, everyone for your thoughts and> posts....> >> >> > I feel terrible tonight. Went to daughters for the day. Yesterday I> > made some pumpkin pie, (splenda) fantastic tasting pie, (no crust),> and> > each day now am feeling worse. I am calling pulmo in a.m. to talk> > again. I am down to 12 1/2 mg pred. for 2 days now. My weight is> > still going up, and I am not breathing well at all. Hard to get my> > breath, am never any lower than #5 sitting. My sat go down fast ifit> > is not set right for Me.> >> > I don't know how long I will be here, but I am not expecting much> > anymore, am not depressed, just am tired of fighting for a good> > breath. Seems I just can't walk and breath at the same time.> >> > I LOVE YOU THIS DAY> > MARY LOU - RICHMOND VA> > IPF - 02 (AND HOLDING I THINK)> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2008 Report Share Posted November 2, 2008 Joyce, It's really very simple. When we move around our muscles use oxygen. It's fuel for our bodies. Since our lungs are damaged and can't meet the increased need by themselves, we need more O2 in order for our bodies to work. When you're just sitting still, your muscles are quiet and not needing alot of O2, when we move around we need more. Does that make sense? Beth-Moderator Fibrotic NSIP 06/06 UCTD 06/08 "Take chances, make mistakes and get messy!" Miss Frizzle To: Breathe-Support Sent: Sunday, November 2, 2008 7:34:54 PMSubject: Re: Oxygen use Thanks for the explanation Beth The highest i go is 4lpm, either pulse or continuous. Sometimes I forget to turn it back down. Interesting how when inactive i can use 2 lpm, and then need more as activity starts. I wonder why that happens.Pink Joyce IPF 3/06 Pennsylvania From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Re: THANKS, everyone for your thoughts and posts....To: Breathe-Support@ yahoogroups. comDate: Sunday, November 2, 2008, 5:15 PM Lou, I'm sorry that you are feeling so terrible. I'm glad that you are talking to your doctor tomorrow. Please ask him to explain why you cannot use more than 5 liters of O2. What does he want you to do if your sats are below 90 with 5 liters? These are reasonable questions and you need answers that you can understand. Please save a piece of that pie for me! You are in my prayers dear lady! Beth-Moderator Fibrotic NSIP 06/06 UCTD 06/08 "Take chances, make mistakes and get messy!" Miss Frizzle From: Lou <mlpretired (AT) aol (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sunday, November 2, 2008 5:00:58 PMSubject: THANKS, everyone for your thoughts and posts.... I feel terrible tonight. Went to daughters for the day. Yesterday I made some pumpkin pie, (splenda) fantastic tasting pie, (no crust), and each day now am feeling worse. I am calling pulmo in a.m. to talk again. I am down to 12 1/2 mg pred. for 2 days now. My weight is still going up, and I am not breathing well at all. Hard to get my breath, am never any lower than #5 sitting. My sat go down fast if it is not set right for Me.I don't know how long I will be here, but I am not expecting much anymore, am not depressed, just am tired of fighting for a good breath. Seems I just can't walk and breath at the same time.I LOVE YOU THIS DAYMARY LOU - RICHMOND VAIPF - 02 (AND HOLDING I THINK) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2008 Report Share Posted November 2, 2008 thank you for the site for oximeter; and the validation to get one. Have been thinking about it for months and exploring different sites and oximeters.. Just took one more thing off my list.. thanks again and take care Patti Friend, newbie > > > > From: Beth mbmurtha (AT) yahoo (DOT) com> > > Subject: Re: THANKS, everyone for your thoughts and > posts.... > > To: Breathe-Support@ yahoogroups. com > > Date: Sunday, November 2, 2008, 5:15 PM > > > > > > Lou, > > I'm sorry that you are feeling so terrible. I'm glad that you are > talking to your doctor tomorrow. Please ask him to explain why you > cannot use more than 5 liters of O2. What does he want you to do if your > sats are below 90 with 5 liters? These are reasonable questions and you > need answers that you can understand. > > Please save a piece of that pie for me! You are in my prayers dear > lady! > > > > Beth-Moderator > > Fibrotic NSIP 06/06 UCTD 06/08 > > > > " Take chances, make mistakes and get messy! " > > Miss Frizzle > > > > > > > > > > > > ---------------------------------------------------------- > > From: Lou mlpretired (AT) aol (DOT) com> > > To: Breathe-Support@ yahoogroups. com > > Sent: Sunday, November 2, 2008 5:00:58 PM > > Subject: THANKS, everyone for your thoughts and > posts.... > > > > > > I feel terrible tonight. Went to daughters for the day. Yesterday I > > made some pumpkin pie, (splenda) fantastic tasting pie, (no crust), > and > > each day now am feeling worse. I am calling pulmo in a.m. to talk > > again. I am down to 12 1/2 mg pred. for 2 days now. My weight is > > still going up, and I am not breathing well at all. Hard to get my > > breath, am never any lower than #5 sitting. My sat go down fast if it > > is not set right for Me. > > > > I don't know how long I will be here, but I am not expecting much > > anymore, am not depressed, just am tired of fighting for a good > > breath. Seems I just can't walk and breath at the same time. > > > > I LOVE YOU THIS DAY > > MARY LOU - RICHMOND VA > > IPF - 02 (AND HOLDING I THINK) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2008 Report Share Posted November 2, 2008 Patti The $64.95 unit at the top of the page is FDA approved and the one Sher is talking about. http://portablenebs.com/tripleoximeter.htm Do not buy the $48.95 Ascent. It is not FDA approved and is not for medical use. > > >> > > From: Beth mbmurtha (AT) yahoo (DOT) com>> > > Subject: Re: THANKS, everyone for your > thoughts and> > posts....> > > To: Breathe-Support@ yahoogroups. com> > > Date: Sunday, November 2, 2008, 5:15 PM> > >> > >> > > Lou,> > > I'm sorry that you are feeling so terrible. I'm glad that you > are> > talking to your doctor tomorrow. Please ask him to explain why > you> > cannot use more than 5 liters of O2. What does he want you to do > if your> > sats are below 90 with 5 liters? These are reasonable questions > and you> > need answers that you can understand.> > > Please save a piece of that pie for me! You are in my prayers > dear> > lady!> > >> > > Beth-Moderator> > > Fibrotic NSIP 06/06 UCTD 06/08> > >> > > "Take chances, make mistakes and get messy!"> > > Miss Frizzle> > >> > >> > >> > >> > >> > > ----------------------------------------------------------> > > From: Lou mlpretired (AT) aol (DOT) com>> > > To: Breathe-Support@ yahoogroups. com> > > Sent: Sunday, November 2, 2008 5:00:58 PM> > > Subject: THANKS, everyone for your thoughts > and> > posts....> > >> > >> > > I feel terrible tonight. Went to daughters for the day. > Yesterday I> > > made some pumpkin pie, (splenda) fantastic tasting pie, (no > crust),> > and> > > each day now am feeling worse. I am calling pulmo in a.m. to > talk> > > again. I am down to 12 1/2 mg pred. for 2 days now. My weight > is> > > still going up, and I am not breathing well at all. Hard to > get my> > > breath, am never any lower than #5 sitting. My sat go down > fast if it> > > is not set right for Me.> > >> > > I don't know how long I will be here, but I am not expecting > much> > > anymore, am not depressed, just am tired of fighting for a good> > > breath. Seems I just can't walk and breath at the same time.> > >> > > I LOVE YOU THIS DAY> > > MARY LOU - RICHMOND VA> > > IPF - 02 (AND HOLDING I THINK)> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2008 Report Share Posted November 3, 2008 Beth Yes it does make sense, thanksPink Joyce IPF 3/06 Pennsylvania From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Re: THANKS, everyone for your thoughts and posts....To: Breathe-Support@ yahoogroups. comDate: Sunday, November 2, 2008, 5:15 PM Lou, I'm sorry that you are feeling so terrible. I'm glad that you are talking to your doctor tomorrow. Please ask him to explain why you cannot use more than 5 liters of O2. What does he want you to do if your sats are below 90 with 5 liters? These are reasonable questions and you need answers that you can understand. Please save a piece of that pie for me! You are in my prayers dear lady! Beth-Moderator Fibrotic NSIP 06/06 UCTD 06/08 "Take chances, make mistakes and get messy!" Miss Frizzle From: Lou <mlpretired (AT) aol (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sunday, November 2, 2008 5:00:58 PMSubject: THANKS, everyone for your thoughts and posts.... I feel terrible tonight. Went to daughters for the day. Yesterday I made some pumpkin pie, (splenda) fantastic tasting pie, (no crust), and each day now am feeling worse. I am calling pulmo in a.m. to talk again. I am down to 12 1/2 mg pred. for 2 days now. My weight is still going up, and I am not breathing well at all. Hard to get my breath, am never any lower than #5 sitting. My sat go down fast if it is not set right for Me.I don't know how long I will be here, but I am not expecting much anymore, am not depressed, just am tired of fighting for a good breath. Seems I just can't walk and breath at the same time.I LOVE YOU THIS DAYMARY LOU - RICHMOND VAIPF - 02 (AND HOLDING I THINK) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2008 Report Share Posted November 3, 2008 I said this before when the discussion on oximeters came up, but I will repeat it now for the benefit of the newbies - check with your pulmonologist or primary care physician - my pulmonologist wrote a prescription for an oximeter for me which went to my oxygen supplier. They ordered one, delivered it to me, and my insurance covered it completely! So, check with you dr. and your insurance, if you have it. Steve aka...Knip Dx 9/07 confirmed via VATS 12/07 56 NH > > > > > > From: Beth mbmurtha (AT) yahoo (DOT) com> > > > Subject: Re: THANKS, everyone for your thoughts > and > > posts.... > > > To: Breathe-Support@ yahoogroups. com > > > Date: Sunday, November 2, 2008, 5:15 PM > > > > > > > > > Lou, > > > I'm sorry that you are feeling so terrible. I'm glad that you are > > talking to your doctor tomorrow. Please ask him to explain why you > > cannot use more than 5 liters of O2. What does he want you to do if > your > > sats are below 90 with 5 liters? These are reasonable questions and > you > > need answers that you can understand. > > > Please save a piece of that pie for me! You are in my prayers dear > > lady! > > > > > > Beth-Moderator > > > Fibrotic NSIP 06/06 UCTD 06/08 > > > > > > " Take chances, make mistakes and get messy! " > > > Miss Frizzle > > > > > > > > > > > > > > > > > > ------------ --------- --------- --------- --------- --------- - > > > From: Lou mlpretired (AT) aol (DOT) com> > > > To: Breathe-Support@ yahoogroups. com > > > Sent: Sunday, November 2, 2008 5:00:58 PM > > > Subject: THANKS, everyone for your thoughts and > > posts.... > > > > > > > > > I feel terrible tonight. Went to daughters for the day. Yesterday I > > > made some pumpkin pie, (splenda) fantastic tasting pie, (no crust), > > and > > > each day now am feeling worse. I am calling pulmo in a.m. to talk > > > again. I am down to 12 1/2 mg pred. for 2 days now. My weight is > > > still going up, and I am not breathing well at all. Hard to get my > > > breath, am never any lower than #5 sitting. My sat go down fast if > it > > > is not set right for Me. > > > > > > I don't know how long I will be here, but I am not expecting much > > > anymore, am not depressed, just am tired of fighting for a good > > > breath. Seems I just can't walk and breath at the same time. > > > > > > I LOVE YOU THIS DAY > > > MARY LOU - RICHMOND VA > > > IPF - 02 (AND HOLDING I THINK) > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2008 Report Share Posted November 3, 2008 Steve Some do, some don't. Medicare doesn't. While checking with your insurance makes sense, do not wait if it appears there will be a delay. A two months period from physician to supplier to insurer to supplier to order to you could be two months of damage and with $65 oximeters its not worth it. If then you get one through insurance, you have a spare. If you have a copay on your insurance, it might well run more than the $65 as well. So just move quickly. > > > > > > > > From: Beth mbmurtha (AT) yahoo (DOT) com> > > > > Subject: Re: THANKS, everyone for your > thoughts > > and > > > posts.... > > > > To: Breathe-Support@ yahoogroups. com > > > > Date: Sunday, November 2, 2008, 5:15 PM > > > > > > > > > > > > Lou, > > > > I'm sorry that you are feeling so terrible. I'm glad that you > are > > > talking to your doctor tomorrow. Please ask him to explain why you > > > cannot use more than 5 liters of O2. What does he want you to do > if > > your > > > sats are below 90 with 5 liters? These are reasonable questions > and > > you > > > need answers that you can understand. > > > > Please save a piece of that pie for me! You are in my prayers > dear > > > lady! > > > > > > > > Beth-Moderator > > > > Fibrotic NSIP 06/06 UCTD 06/08 > > > > > > > > " Take chances, make mistakes and get messy! " > > > > Miss Frizzle > > > > > > > > > > > > > > > > > > > > > > > > ------------ --------- --------- --------- --------- --------- - > > > > From: Lou mlpretired (AT) aol (DOT) com> > > > > To: Breathe-Support@ yahoogroups. com > > > > Sent: Sunday, November 2, 2008 5:00:58 PM > > > > Subject: THANKS, everyone for your thoughts > and > > > posts.... > > > > > > > > > > > > I feel terrible tonight. Went to daughters for the day. > Yesterday I > > > > made some pumpkin pie, (splenda) fantastic tasting pie, (no > crust), > > > and > > > > each day now am feeling worse. I am calling pulmo in a.m. to > talk > > > > again. I am down to 12 1/2 mg pred. for 2 days now. My weight is > > > > still going up, and I am not breathing well at all. Hard to get > my > > > > breath, am never any lower than #5 sitting. My sat go down fast > if > > it > > > > is not set right for Me. > > > > > > > > I don't know how long I will be here, but I am not expecting > much > > > > anymore, am not depressed, just am tired of fighting for a good > > > > breath. Seems I just can't walk and breath at the same time. > > > > > > > > I LOVE YOU THIS DAY > > > > MARY LOU - RICHMOND VA > > > > IPF - 02 (AND HOLDING I THINK) > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2008 Report Share Posted November 3, 2008 OR there is the option that I used a couple of years ago. I got my prescription from my doctor, purchased the oximeter and then submitted the invoice, prescription and claim to Aetna. It took about 60 days but I was reimbursed 100% by Aetna. Beth-Moderator Fibrotic NSIP 06/06 UCTD 06/08 "Take chances, make mistakes and get messy!" Miss Frizzle To: Breathe-Support Sent: Monday, November 3, 2008 9:51:50 AMSubject: Re: Oxygen use SteveSome do, some don't. Medicare doesn't. While checking with yourinsurance makes sense, do not wait if it appears there will be a delay.A two months period from physician to supplier to insurer to supplier toorder to you could be two months of damage and with $65 oximeters itsnot worth it. If then you get one through insurance, you have a spare.If you have a copay on your insurance, it might well run more than the$65 as well. So just move quickly.> > > >> > > > From: Beth mbmurtha (AT) yahoo (DOT) com>> > > > Subject: Re: THANKS, everyone for your> thoughts> > and> > > posts....> > > > To: Breathe-Support@ yahoogroups. com> > > > Date: Sunday, November 2, 2008, 5:15 PM> > > >> > > >> > > > Lou,> > > > I'm sorry that you are feeling so terrible. I'm glad that you> are> > > talking to your doctor tomorrow. Please ask him to explain why you> > > cannot use more than 5 liters of O2. What does he want you to do> if> > your> > > sats are below 90 with 5 liters? These are reasonable questions> and> > you> > > need answers that you can understand.> > > > Please save a piece of that pie for me! You are in my prayers> dear> > > lady!> > > >> > > > Beth-Moderator> > > > Fibrotic NSIP 06/06 UCTD 06/08> > > >> > > > "Take chances, make mistakes and get messy!"> > > > Miss Frizzle> > > >> > > >> > > >> > > >> > > >> > > > ------------ --------- --------- --------- --------- --------- -> > > > From: Lou mlpretired (AT) aol (DOT) com>> > > > To: Breathe-Support@ yahoogroups. com> > > > Sent: Sunday, November 2, 2008 5:00:58 PM> > > > Subject: THANKS, everyone for your thoughts> and> > > posts....> > > >> > > >> > > > I feel terrible tonight. Went to daughters for the day.> Yesterday I> > > > made some pumpkin pie, (splenda) fantastic tasting pie, (no> crust),> > > and> > > > each day now am feeling worse. I am calling pulmo in a.m. to> talk> > > > again. I am down to 12 1/2 mg pred. for 2 days now. My weight is> > > > still going up, and I am not breathing well at all. Hard to get> my> > > > breath, am never any lower than #5 sitting. My sat go down fast> if> > it> > > > is not set right for Me.> > > >> > > > I don't know how long I will be here, but I am not expecting> much> > > > anymore, am not depressed, just am tired of fighting for a good> > > > breath. Seems I just can't walk and breath at the same time.> > > >> > > > I LOVE YOU THIS DAY> > > > MARY LOU - RICHMOND VA> > > > IPF - 02 (AND HOLDING I THINK)> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2008 Report Share Posted November 3, 2008 MB At the time I was using Apria and on Aetna. First, Aetna messed around with it even though told exactly what they were to do. Finally they said it was on order and I find out they've ordered a stationery bedside type unit. Ok, back to the drawing board. They've now conveniently lost the prescription that said Nonin 9500 and need another. Then they say they don't carry Nonin but do have Respironics. I ask what model. They say 950. I explain to them that is a relabeled Nonin 9500 not even disguised as you see the numbering. Should be simple now? Right? Nope, they missed December so now I'm into January and got a new copay. Now understand I was only going to have Aetna for one month before Medicare and hadn't planned on pitching in Copays during that month. They call me to let me know my copay is $316. I say " WTH? " Yes, they say the price is $1580. I say you're committing robbery charging that for a $250 oximeter. They say, but we provide maintenance and support. Meanwhile they find that they aren't suppose to sell it anyway but rent it to me. Now the monthly charge is $280 which is still more in one month than the cost of it. My copay would be $56. Of course, I'd only have it one month since that was as long as I had Aetna left. I quite suspect that had I submitted a bill for mine to Aetna it would have worked too since they are use to paying so much more to Apria. Now there was no real panic because I already had purchased an SPO months earlier, just didn't like it as well. I went on and ordered a Nonin on my own. But it was very frustrating and convuluted and certainly played a part in my ultimate decision to leave Apria. Their routine service to me was fine, but anything else was too difficult. For instance they wanted six week notice on travel. Then said " well, a month is ok " . Had I wanted a travel concentrator, they had two for the entire region. I've never used one but my small local supplier has four. And, as to a reservoir for the car, only for trips and if available based on four weeks notice. > > > > > > > > > > From: Beth mbmurtha (AT) yahoo (DOT) com> > > > > > Subject: Re: THANKS, everyone for your > > thoughts > > > and > > > > posts.... > > > > > To: Breathe-Support@ yahoogroups. com > > > > > Date: Sunday, November 2, 2008, 5:15 PM > > > > > > > > > > > > > > > Lou, > > > > > I'm sorry that you are feeling so terrible. I'm glad that you > > are > > > > talking to your doctor tomorrow. Please ask him to explain why you > > > > cannot use more than 5 liters of O2. What does he want you to do > > if > > > your > > > > sats are below 90 with 5 liters? These are reasonable questions > > and > > > you > > > > need answers that you can understand. > > > > > Please save a piece of that pie for me! You are in my prayers > > dear > > > > lady! > > > > > > > > > > Beth-Moderator > > > > > Fibrotic NSIP 06/06 UCTD 06/08 > > > > > > > > > > " Take chances, make mistakes and get messy! " > > > > > Miss Frizzle > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ------------ --------- --------- --------- --------- --------- - > > > > > From: Lou mlpretired (AT) aol (DOT) com> > > > > > To: Breathe-Support@ yahoogroups. com > > > > > Sent: Sunday, November 2, 2008 5:00:58 PM > > > > > Subject: THANKS, everyone for your thoughts > > and > > > > posts.... > > > > > > > > > > > > > > > I feel terrible tonight. Went to daughters for the day. > > Yesterday I > > > > > made some pumpkin pie, (splenda) fantastic tasting pie, (no > > crust), > > > > and > > > > > each day now am feeling worse. I am calling pulmo in a.m. to > > talk > > > > > again. I am down to 12 1/2 mg pred. for 2 days now. My weight is > > > > > still going up, and I am not breathing well at all. Hard to get > > my > > > > > breath, am never any lower than #5 sitting. My sat go down fast > > if > > > it > > > > > is not set right for Me. > > > > > > > > > > I don't know how long I will be here, but I am not expecting > > much > > > > > anymore, am not depressed, just am tired of fighting for a good > > > > > breath. Seems I just can't walk and breath at the same time. > > > > > > > > > > I LOVE YOU THIS DAY > > > > > MARY LOU - RICHMOND VA > > > > > IPF - 02 (AND HOLDING I THINK) > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2008 Report Share Posted November 3, 2008 that's great--i had to pay for my oximeter even though i sent the data to Blue CrossPink Joyce IPF 3/06 Pennsylvania Subject: Re: Re: Oxygen useTo: Breathe-Support Date: Monday, November 3, 2008, 9:56 AM OR there is the option that I used a couple of years ago. I got my prescription from my doctor, purchased the oximeter and then submitted the invoice, prescription and claim to Aetna. It took about 60 days but I was reimbursed 100% by Aetna. Beth-Moderator Fibrotic NSIP 06/06 UCTD 06/08 "Take chances, make mistakes and get messy!" Miss Frizzle From: Bruce Moreland <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Monday, November 3, 2008 9:51:50 AMSubject: Re: Oxygen use SteveSome do, some don't. Medicare doesn't. While checking with yourinsurance makes sense, do not wait if it appears there will be a delay.A two months period from physician to supplier to insurer to supplier toorder to you could be two months of damage and with $65 oximeters itsnot worth it. If then you get one through insurance, you have a spare.If you have a copay on your insurance, it might well run more than the$65 as well. So just move quickly.> > > >> > > > From: Beth mbmurtha (AT) yahoo (DOT) com>> > > > Subject: Re: THANKS, everyone for your> thoughts> > and> > > posts....> > > > To: Breathe-Support@ yahoogroups. com> > > > Date: Sunday, November 2, 2008, 5:15 PM> > > >> > > >> > > > Lou,> > > > I'm sorry that you are feeling so terrible. I'm glad that you> are> > > talking to your doctor tomorrow. Please ask him to explain why you> > > cannot use more than 5 liters of O2. What does he want you to do> if> > your> > > sats are below 90 with 5 liters? These are reasonable questions> and> > you> > > need answers that you can understand.> > > > Please save a piece of that pie for me! You are in my prayers> dear> > > lady!> > > >> > > > Beth-Moderator> > > > Fibrotic NSIP 06/06 UCTD 06/08> > > >> > > > "Take chances, make mistakes and get messy!"> > > > Miss Frizzle> > > >> > > >> > > >> > > >> > > >> > > > ------------ --------- --------- --------- --------- --------- -> > > > From: Lou mlpretired (AT) aol (DOT) com>> > > > To: Breathe-Support@ yahoogroups. com> > > > Sent: Sunday, November 2, 2008 5:00:58 PM> > > > Subject: THANKS, everyone for your thoughts> and> > > posts....> > > >> > > >> > > > I feel terrible tonight. Went to daughters for the day.> Yesterday I> > > > made some pumpkin pie, (splenda) fantastic tasting pie, (no> crust),> > > and> > > > each day now am feeling worse. I am calling pulmo in a.m. to> talk> > > > again. I am down to 12 1/2 mg pred. for 2 days now. My weight is> > > > still going up, and I am not breathing well at all. Hard to get> my> > > > breath, am never any lower than #5 sitting. My sat go down fast> if> > it> > > > is not set right for Me.> > > >> > > > I don't know how long I will be here, but I am not expecting> much> > > > anymore, am not depressed, just am tired of fighting for a good> > > > breath. Seems I just can't walk and breath at the same time.> > > >> > > > I LOVE YOU THIS DAY> > > > MARY LOU - RICHMOND VA> > > > IPF - 02 (AND HOLDING I THINK)> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2008 Report Share Posted November 3, 2008 Hi Mama-Sher, Bruce, ML, MB, and everyone, I totally agree that the oximeter is of utmost importance. My doctor at Emory tells me to check my sats and adjust my oxygen settings. Because of my oxygen, I went to the head of the line in early whereass others had to wait 3 hours. Toodles! Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl > >> > From: Beth mbmurtha (AT) yahoo (DOT) com>> > Subject: Re: THANKS, everyone for your thoughts and> posts....> > To: Breathe-Support@ yahoogroups. com> > Date: Sunday, November 2, 2008, 5:15 PM> >> >> > Lou,> > I'm sorry that you are feeling so terrible. I'm glad that you are> talking to your doctor tomorrow. Please ask him to explain why you> cannot use more than 5 liters of O2. What does he want you to do if your> sats are below 90 with 5 liters? These are reasonable questions and you> need answers that you can understand.> > Please save a piece of that pie for me! You are in my prayers dear> lady!> >> > Beth-Moderator> > Fibrotic NSIP 06/06 UCTD 06/08> >> > "Take chances, make mistakes and get messy!"> > Miss Frizzle> >> >> >> >> >> > ----------------------------------------------------------> > From: Lou mlpretired (AT) aol (DOT) com>> > To: Breathe-Support@ yahoogroups. com> > Sent: Sunday, November 2, 2008 5:00:58 PM> > Subject: THANKS, everyone for your thoughts and> posts....> >> >> > I feel terrible tonight. Went to daughters for the day. Yesterday I> > made some pumpkin pie, (splenda) fantastic tasting pie, (no crust),> and> > each day now am feeling worse. I am calling pulmo in a.m. to talk> > again. I am down to 12 1/2 mg pred. for 2 days now. My weight is> > still going up, and I am not breathing well at all. Hard to get my> > breath, am never any lower than #5 sitting. My sat go down fast if it> > is not set right for Me.> >> > I don't know how long I will be here, but I am not expecting much> > anymore, am not depressed, just am tired of fighting for a good> > breath. Seems I just can't walk and breath at the same time.> >> > I LOVE YOU THIS DAY> > MARY LOU - RICHMOND VA> > IPF - 02 (AND HOLDING I THINK)> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2008 Report Share Posted November 3, 2008 Jane, I sometimes have to ask to be let at the front of the line if I roam around the store to long and my 02gets low. I've only had one lady give me a grunt and dirty look. Which i could care less about. I do try to watch itI am going to try to get the package out to you this week. I'm sorry it has taken a little longer but I was waiting for new fabric to come. Love & Prayers, PeggyFlorida,  IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2008 Report Share Posted November 3, 2008 Hi Patti ... I'm glad the website is helpful to you. I've been reading your posts and can't offer much in the way of suggestions because I don't deal w/what you deal with. Others here will be helpful with the O2 problems. I use O2 more and more now. I was dx (diagnosed) 3-06 and remained fairly stable until a few months ago. Now I'm SOB (short of breath) most of the time. I admire you going to NY by train...you don't say how old you are or I may have missed it...I could not do that myself but I'm 70 now and there are many things I can no longer do. Usually because of this damn disease we share. Hang in there and welcome to our board. You're in the best place you can be. MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! THANKS, everyone for your thoughts and> posts....> >> >> > I feel terrible tonight. Went to daughters for the day. Yesterday I> > made some pumpkin pie, (splenda) fantastic tasting pie, (no crust),> and> > each day now am feeling worse. I am calling pulmo in a.m. to talk> > again. I am down to 12 1/2 mg pred. for 2 days now. My weight is> > still going up, and I am not breathing well at all. Hard to get my> > breath, am never any lower than #5 sitting. My sat go down fast if it> > is not set right for Me.> >> > I don't know how long I will be here, but I am not expecting much> > anymore, am not depressed, just am tired of fighting for a good> > breath. Seems I just can't walk and breath at the same time.> >> > I LOVE YOU THIS DAY> > MARY LOU - RICHMOND VA> > IPF - 02 (AND HOLDING I THINK)> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2008 Report Share Posted November 8, 2008 Hi i am 56 Yrs old and diagnosed in July 06 officially. Was seen at first on xrays in 99. Trust me the train was not by myself and carting 15 m6 tanks in rolling back pack.. kids get tired.. sorry,about your SOB increasing, i agree i find myself with the breathing getting tougher. Very frustrating not being able to do alot of things, find myself saying no alot.... But my theory is with the LORD and tinkerbell you got to BELIEVE>>> > > > > > > From: Beth mbmurtha (AT) yahoo (DOT) com> > > > Subject: Re: THANKS, everyone for your > thoughts and > > posts.... > > > To: Breathe-Support@ yahoogroups. com > > > Date: Sunday, November 2, 2008, 5:15 PM > > > > > > > > > Lou, > > > I'm sorry that you are feeling so terrible. I'm glad that you > are > > talking to your doctor tomorrow. Please ask him to explain why > you > > cannot use more than 5 liters of O2. What does he want you to do > if your > > sats are below 90 with 5 liters? These are reasonable questions > and you > > need answers that you can understand. > > > Please save a piece of that pie for me! You are in my prayers > dear > > lady! > > > > > > Beth-Moderator > > > Fibrotic NSIP 06/06 UCTD 06/08 > > > > > > " Take chances, make mistakes and get messy! " > > > Miss Frizzle > > > > > > > > > > > > > > > > > > ---------------------------------------------------------- > > > From: Lou mlpretired (AT) aol (DOT) com> > > > To: Breathe-Support@ yahoogroups. com > > > Sent: Sunday, November 2, 2008 5:00:58 PM > > > Subject: THANKS, everyone for your thoughts > and > > posts.... > > > > > > > > > I feel terrible tonight. Went to daughters for the day. > Yesterday I > > > made some pumpkin pie, (splenda) fantastic tasting pie, (no > crust), > > and > > > each day now am feeling worse. I am calling pulmo in a.m. to > talk > > > again. I am down to 12 1/2 mg pred. for 2 days now. My weight > is > > > still going up, and I am not breathing well at all. Hard to > get my > > > breath, am never any lower than #5 sitting. My sat go down > fast if it > > > is not set right for Me. > > > > > > I don't know how long I will be here, but I am not expecting > much > > > anymore, am not depressed, just am tired of fighting for a good > > > breath. Seems I just can't walk and breath at the same time. > > > > > > I LOVE YOU THIS DAY > > > MARY LOU - RICHMOND VA > > > IPF - 02 (AND HOLDING I THINK) > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2008 Report Share Posted November 8, 2008 Patti...even if you had others with you on the train, it has to be a daunting task. I am constantly in awe of the courage members show at different times with different situations... MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! THANKS, everyone for your thoughts > and> > posts....> > >> > >> > > I feel terrible tonight. Went to daughters for the day. > Yesterday I> > > made some pumpkin pie, (splenda) fantastic tasting pie, (no > crust),> > and> > > each day now am feeling worse. I am calling pulmo in a.m. to > talk> > > again. I am down to 12 1/2 mg pred. for 2 days now. My weight > is> > > still going up, and I am not breathing well at all. Hard to > get my> > > breath, am never any lower than #5 sitting. My sat go down > fast if it> > > is not set right for Me.> > >> > > I don't know how long I will be here, but I am not expecting > much> > > anymore, am not depressed, just am tired of fighting for a good> > > breath. Seems I just can't walk and breath at the same time.> > >> > > I LOVE YOU THIS DAY> > > MARY LOU - RICHMOND VA> > > IPF - 02 (AND HOLDING I THINK)> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2008 Report Share Posted November 8, 2008 thank you; now if you guys would create a lighter let me say 3 pound oxygen tank that never ends... lol ; all our prayers right... sorry.. patti > > > > > > > > From: Beth mbmurtha (AT) yahoo (DOT) com> > > > > Subject: Re: THANKS, everyone for your > > thoughts and > > > posts.... > > > > To: Breathe-Support@ yahoogroups. com > > > > Date: Sunday, November 2, 2008, 5:15 PM > > > > > > > > > > > > Lou, > > > > I'm sorry that you are feeling so terrible. I'm glad that you > > are > > > talking to your doctor tomorrow. Please ask him to explain why > > you > > > cannot use more than 5 liters of O2. What does he want you to do > > if your > > > sats are below 90 with 5 liters? These are reasonable questions > > and you > > > need answers that you can understand. > > > > Please save a piece of that pie for me! You are in my prayers > > dear > > > lady! > > > > > > > > Beth-Moderator > > > > Fibrotic NSIP 06/06 UCTD 06/08 > > > > > > > > " Take chances, make mistakes and get messy! " > > > > Miss Frizzle > > > > > > > > > > > > > > > > > > > > > > > > ---------------------------------------------------------- > > > > From: Lou mlpretired (AT) aol (DOT) com> > > > > To: Breathe-Support@ yahoogroups. com > > > > Sent: Sunday, November 2, 2008 5:00:58 PM > > > > Subject: THANKS, everyone for your thoughts > > and > > > posts.... > > > > > > > > > > > > I feel terrible tonight. Went to daughters for the day. > > Yesterday I > > > > made some pumpkin pie, (splenda) fantastic tasting pie, (no > > crust), > > > and > > > > each day now am feeling worse. I am calling pulmo in a.m. to > > talk > > > > again. I am down to 12 1/2 mg pred. for 2 days now. My weight > > is > > > > still going up, and I am not breathing well at all. Hard to > > get my > > > > breath, am never any lower than #5 sitting. My sat go down > > fast if it > > > > is not set right for Me. > > > > > > > > I don't know how long I will be here, but I am not expecting > > much > > > > anymore, am not depressed, just am tired of fighting for a good > > > > breath. Seems I just can't walk and breath at the same time. > > > > > > > > I LOVE YOU THIS DAY > > > > MARY LOU - RICHMOND VA > > > > IPF - 02 (AND HOLDING I THINK) > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2008 Report Share Posted November 8, 2008 Sher i am in such awe of everyone here. the strength, the humor, the sense of comradery.. and even the ability to say how you truely feel.. i know i am constantly putting on the mask for my friends and family. sometimes, though it is just too much, and you get tired. but this too shall pass..thanks patti > > > > > > > > From: Beth mbmurtha (AT) yahoo (DOT) com> > > > > Subject: Re: THANKS, everyone for your > > thoughts and > > > posts.... > > > > To: Breathe-Support@ yahoogroups. com > > > > Date: Sunday, November 2, 2008, 5:15 PM > > > > > > > > > > > > Lou, > > > > I'm sorry that you are feeling so terrible. I'm glad that > you > > are > > > talking to your doctor tomorrow. Please ask him to explain why > > you > > > cannot use more than 5 liters of O2. What does he want you to > do > > if your > > > sats are below 90 with 5 liters? These are reasonable > questions > > and you > > > need answers that you can understand. > > > > Please save a piece of that pie for me! You are in my > prayers > > dear > > > lady! > > > > > > > > Beth-Moderator > > > > Fibrotic NSIP 06/06 UCTD 06/08 > > > > > > > > " Take chances, make mistakes and get messy! " > > > > Miss Frizzle > > > > > > > > > > > > > > > > > > > > > > > > ---------------------------------------------------------- > > > > From: Lou mlpretired (AT) aol (DOT) com> > > > > To: Breathe-Support@ yahoogroups. com > > > > Sent: Sunday, November 2, 2008 5:00:58 PM > > > > Subject: THANKS, everyone for your > thoughts > > and > > > posts.... > > > > > > > > > > > > I feel terrible tonight. Went to daughters for the day. > > Yesterday I > > > > made some pumpkin pie, (splenda) fantastic tasting pie, (no > > crust), > > > and > > > > each day now am feeling worse. I am calling pulmo in a.m. to > > talk > > > > again. I am down to 12 1/2 mg pred. for 2 days now. My > weight > > is > > > > still going up, and I am not breathing well at all. Hard to > > get my > > > > breath, am never any lower than #5 sitting. My sat go down > > fast if it > > > > is not set right for Me. > > > > > > > > I don't know how long I will be here, but I am not expecting > > much > > > > anymore, am not depressed, just am tired of fighting for a > good > > > > breath. Seems I just can't walk and breath at the same time. > > > > > > > > I LOVE YOU THIS DAY > > > > MARY LOU - RICHMOND VA > > > > IPF - 02 (AND HOLDING I THINK) > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2008 Report Share Posted November 8, 2008 Patti Actually we're making progress in that direction with the travel concentrators. We've effectively cut concentrators to about a third of the weight and used batteries to provide some time at moderate flow. So, the challenge is to make a smaller more powerful concentrator itself and to make lighter, longer lasting batteries. I see the concentrator motor size and such as less of a problem than the batteries. Thats still one of the problems with electric only cars, the weight of the batteries versus their charge. Now, maybe solar powered. Now, we're getting somewhere. So, we need someone to invent a very tiny solar powered concentrator. The other way I see something happening too would be if someone could design a conserver as good as the Victor MB uses for a liquid oxygen portable. The current demand systems on liquid oxygen are between 2:1 and 3:1. But you take something the size of a Helios Marathon and put a conserver like her Victor on it and you'd have it made. Right now the Marathon weighs 5.6 pounds full and on continuous two lasts 5.5 hours, on 4 lasts 2.8 hours. (It lasts up to 17 hours on demand). So put that on a 6:1 conserver and now in 5.6 pounds you'd get 30 hours at 2 or 16 hours at 4 lpm. There is no reason for that not to happen. It's not a big stretch from current technology. Even a 3.6 pound unit should then give you 14 hours at 2 and 7 at 4 lpm. But, 5.6 pounds isn't bad. > > > > > > > > > > From: Beth mbmurtha (AT) yahoo (DOT) com> > > > > > Subject: Re: THANKS, everyone for your > > > thoughts and > > > > posts.... > > > > > To: Breathe-Support@ yahoogroups. com > > > > > Date: Sunday, November 2, 2008, 5:15 PM > > > > > > > > > > > > > > > Lou, > > > > > I'm sorry that you are feeling so terrible. I'm glad that you > > > are > > > > talking to your doctor tomorrow. Please ask him to explain why > > > you > > > > cannot use more than 5 liters of O2. What does he want you to > do > > > if your > > > > sats are below 90 with 5 liters? These are reasonable questions > > > and you > > > > need answers that you can understand. > > > > > Please save a piece of that pie for me! You are in my prayers > > > dear > > > > lady! > > > > > > > > > > Beth-Moderator > > > > > Fibrotic NSIP 06/06 UCTD 06/08 > > > > > > > > > > " Take chances, make mistakes and get messy! " > > > > > Miss Frizzle > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ---------------------------------------------------------- > > > > > From: Lou mlpretired (AT) aol (DOT) com> > > > > > To: Breathe-Support@ yahoogroups. com > > > > > Sent: Sunday, November 2, 2008 5:00:58 PM > > > > > Subject: THANKS, everyone for your thoughts > > > and > > > > posts.... > > > > > > > > > > > > > > > I feel terrible tonight. Went to daughters for the day. > > > Yesterday I > > > > > made some pumpkin pie, (splenda) fantastic tasting pie, (no > > > crust), > > > > and > > > > > each day now am feeling worse. I am calling pulmo in a.m. to > > > talk > > > > > again. I am down to 12 1/2 mg pred. for 2 days now. My weight > > > is > > > > > still going up, and I am not breathing well at all. Hard to > > > get my > > > > > breath, am never any lower than #5 sitting. My sat go down > > > fast if it > > > > > is not set right for Me. > > > > > > > > > > I don't know how long I will be here, but I am not expecting > > > much > > > > > anymore, am not depressed, just am tired of fighting for a > good > > > > > breath. Seems I just can't walk and breath at the same time. > > > > > > > > > > I LOVE YOU THIS DAY > > > > > MARY LOU - RICHMOND VA > > > > > IPF - 02 (AND HOLDING I THINK) > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.