Guest guest Posted January 28, 2009 Report Share Posted January 28, 2009 Margaret...will wonders never cease?? I'm almost afraid to pursue the issue but I've never heard of anyone being "incontinent" due to low O2. What's next! MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Cronic cough Zhi, question about the marathon; do i remember you having one.. i know someone on the board does. received one last week with no directions; havent had the opportunity to use yet.. went to use the other day and found it was empty; then my brain somewhere thought it heard it does evaporate.. so now need to remember to fill before leaving house. Can you or anyone give me any info. How long does it last on 6 cont. thanks for any feedback Patti, Cherry Hill, NJ, ipf 7'06, raynauds, scleroderma, PH 2'07> >> > I was diagnosed with IPF in March 2005. I'm unable to do things> > without my oxygen. When I try without the oxygen, it's difficult and I> > cough uncontrollably. So the doctor put me on 3 liters 24/7. I take a> > portable tank with me when I go out.> >> > The cough is very annoying. There are times that I'm unable to speak> > because I'm unable to breath and the coughing. When I cough, I have a> > burning sensation in the back of my throat. The pain goes into the> > base of my neck (below my adam's apple).> >> > I'm going to my PCP next week to discuss this. Does anyone else have> > this type of problem?> >> > Thanks for your thoughts.> >> > > >> > > > ------------ --------- --------- --------- --------- --------- --------> >> >> > No virus found in this incoming message.> > Checked by AVG - http://www.avg. com > > Version: 8.0.176 / Virus Database: 270.10.13/1916 - Release Date: 1/26/2009 7:08 AM> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2009 Report Share Posted January 28, 2009 Sher, I haven't either at least not in that sense. I have "stress incontinence" where I have a tendency to "leak" urine when I cough hard. I think that's fairly typical for alot of women on the board. There are times when I feel like I should own stock in "Poise" pads. But I haven't ever had my large muscles "let go" as Margaret is talking about. It's not really that wonders never cease, it's more like the horrors never cease huh? LOL Beth in North Carolina Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Wednesday, January 28, 2009 12:01:20 PMSubject: Re: Cronic cough Margaret...will wonders never cease?? I'm almost afraid to pursue the issue but I've never heard of anyone being "incontinent" due to low O2. What's next! MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Cronic cough Zhi, question about the marathon; do i remember you having one.. i know someone on the board does. received one last week with no directions; havent had the opportunity to use yet.. went to use the other day and found it was empty; then my brain somewhere thought it heard it does evaporate.. so now need to remember to fill before leaving house. Can you or anyone give me any info. How long does it last on 6 cont. thanks for any feedback Patti, Cherry Hill, NJ, ipf 7'06, raynauds, scleroderma, PH 2'07> >> > I was diagnosed with IPF in March 2005. I'm unable to do things> > without my oxygen. When I try without the oxygen, it's difficult and I> > cough uncontrollably. So the doctor put me on 3 liters 24/7. I take a> > portable tank with me when I go out.> >> > The cough is very annoying. There are times that I'm unable to speak> > because I'm unable to breath and the coughing. When I cough, I have a> > burning sensation in the back of my throat. The pain goes into the> > base of my neck (below my adam's apple).> >> > I'm going to my PCP next week to discuss this. Does anyone else have> > this type of problem?> >> > Thanks for your thoughts.> >> > > >> > > > ------------ --------- --------- --------- --------- --------- --------> >> >> > No virus found in this incoming message.> > Checked by AVG - http://www.avg. com > > Version: 8.0.176 / Virus Database: 270.10.13/1916 - Release Date: 1/26/2009 7:08 AM> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2009 Report Share Posted January 28, 2009 Sher, I haven't either at least not in that sense. I have "stress incontinence" where I have a tendency to "leak" urine when I cough hard. I think that's fairly typical for alot of women on the board. There are times when I feel like I should own stock in "Poise" pads. But I haven't ever had my large muscles "let go" as Margaret is talking about. It's not really that wonders never cease, it's more like the horrors never cease huh? LOL Beth in North Carolina Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Wednesday, January 28, 2009 12:01:20 PMSubject: Re: Cronic cough Margaret...will wonders never cease?? I'm almost afraid to pursue the issue but I've never heard of anyone being "incontinent" due to low O2. What's next! MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Cronic cough Zhi, question about the marathon; do i remember you having one.. i know someone on the board does. received one last week with no directions; havent had the opportunity to use yet.. went to use the other day and found it was empty; then my brain somewhere thought it heard it does evaporate.. so now need to remember to fill before leaving house. Can you or anyone give me any info. How long does it last on 6 cont. thanks for any feedback Patti, Cherry Hill, NJ, ipf 7'06, raynauds, scleroderma, PH 2'07> >> > I was diagnosed with IPF in March 2005. I'm unable to do things> > without my oxygen. When I try without the oxygen, it's difficult and I> > cough uncontrollably. So the doctor put me on 3 liters 24/7. I take a> > portable tank with me when I go out.> >> > The cough is very annoying. There are times that I'm unable to speak> > because I'm unable to breath and the coughing. When I cough, I have a> > burning sensation in the back of my throat. The pain goes into the> > base of my neck (below my adam's apple).> >> > I'm going to my PCP next week to discuss this. Does anyone else have> > this type of problem?> >> > Thanks for your thoughts.> >> > > >> > > > ------------ --------- --------- --------- --------- --------- --------> >> >> > No virus found in this incoming message.> > Checked by AVG - http://www.avg. com > > Version: 8.0.176 / Virus Database: 270.10.13/1916 - Release Date: 1/26/2009 7:08 AM> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2009 Report Share Posted January 28, 2009  Peggy... first of all I think your requirements are higher than mine. This concentrator goes to 6. It's called a VisionAire. Little thing, about 10 W and 24 H. I really enjoy the quiet of it. I can hear it in a second bedroom but only if I turn off TV and listen hard... MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! � Re: Cronic cough MargaretI doubt seriously that her doctor specified which of the portables, butrather did specify flow. The oxygen companies do often provideinappropriate equipment. For the record, doctors offices are oftenrather uninformed too. I realize you've only been here a short while butpeople are provided equipment that isn't best for them all the time andeven told certain equipment doesn't exist sometimes. Doctors offices arenot equipment knowledgeable sometimes and oxygen delivery people oftendeliver what they are use to or have handy or the least that willpossibly work. They deliver Helios Plus all the time to people whoreally need Marathons. They deliver concentrators that only go to 6 lpmwhen and act like there is no higher because thats all they happen tohave at that moment. They are use to COPD patients far more than PFpatients.Marathon is prescribed typically for those who are on flows no greaterthan 4 lpm most of the time as it has demand to 4 lpm and continuous to6 lpm. At 6 lpm, in addition to its short life it's inclined to freezeand it's rather uncomfortable blowing it's maximum. It also provides noroom for more if required. The Companion 1000T or the Caire StrollerHigh Flow are designed for patients requiring more flow. They arecontinuous only and go up to 15 lpm. So, I stand by my statement of theappropriate equipment for someone who constantly requires 6 lpm.Jane uses a respironics evergo and others may. Its a very good piece ofequipment if you can fit within its limitations. It is pulse only andgoes up to 6 lpm. So it can not be used for sleep or for anyone who canonly function on continuous. It works off AC and DC and at 2 lpm willlast nearly 8 hours on two fully charged batteries. Or 4 lpm for 4hours.If one needs continuous for sleep, the only portable that provides thatis the Sequal Eclipse. It is heavier than the Evergo although any ofthem are pretty much going to require a cart. It has continuous of up to3 lpm to go with pulse of 6 lpm.As to the costs for monthly concentrator rentals you are correct thatthey providers are charging quite a bit for little service on normallyrather old and inexpensive concentrators. I think most people believethey are more expensive than they are. I have a personal RespironicsEverflo that I own just for places like my cousins house with miles ofsteps where getting my reservoir inside is difficult. I paid around $700for it new. Reconditioned units are available for half of that. Thereare units under $600 new. However, the cost to the oxygen companies istanks and deliveries. For my reservoir and my liquid portable as well asproviding travel reservoirs when needed (although I also own own a smallone of my own they fill for me) the rate they charge medicare is quitereasonable. Knowing in case of problems I have 24/7 service is quite acomfort as well.> > > >> > > > I was diagnosed with IPF in March 2005. I'm unable to do things> > > > without my oxygen. When I try without the oxygen, it's> difficult> > and I> > > > cough uncontrollably. So the doctor put me on 3 liters 24/7. I> > take a> > > > portable tank with me when I go out.> > > >> > > > The cough is very annoying. There are times that I'm unable to> > speak> > > > because I'm unable to breath and the coughing. When I cough, I> > have a> > > > burning sensation in the back of my throat. The pain goes into> > the> > > > base of my neck (below my adam's apple).> > > >> > > > I'm going to my PCP next week to discuss this. Does anyone> else> > have> > > > this type of problem?> > > >> > > > Thanks for your thoughts.> > > >> > > > > > > >> > > >> > > > ------------ --------- --------- --------- --------- ---------> -> > -------> > > >> > > >> > > > No virus found in this incoming message.> > > > Checked by AVG -�http://www.avg.�com> > > > Version: 8.0.176 / Virus Database: 270.10.13/1916 - Release> > Date: 1/26/2009 7:08 AM> > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2009 Report Share Posted January 28, 2009  Peggy... first of all I think your requirements are higher than mine. This concentrator goes to 6. It's called a VisionAire. Little thing, about 10 W and 24 H. I really enjoy the quiet of it. I can hear it in a second bedroom but only if I turn off TV and listen hard... MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! � Re: Cronic cough MargaretI doubt seriously that her doctor specified which of the portables, butrather did specify flow. The oxygen companies do often provideinappropriate equipment. For the record, doctors offices are oftenrather uninformed too. I realize you've only been here a short while butpeople are provided equipment that isn't best for them all the time andeven told certain equipment doesn't exist sometimes. Doctors offices arenot equipment knowledgeable sometimes and oxygen delivery people oftendeliver what they are use to or have handy or the least that willpossibly work. They deliver Helios Plus all the time to people whoreally need Marathons. They deliver concentrators that only go to 6 lpmwhen and act like there is no higher because thats all they happen tohave at that moment. They are use to COPD patients far more than PFpatients.Marathon is prescribed typically for those who are on flows no greaterthan 4 lpm most of the time as it has demand to 4 lpm and continuous to6 lpm. At 6 lpm, in addition to its short life it's inclined to freezeand it's rather uncomfortable blowing it's maximum. It also provides noroom for more if required. The Companion 1000T or the Caire StrollerHigh Flow are designed for patients requiring more flow. They arecontinuous only and go up to 15 lpm. So, I stand by my statement of theappropriate equipment for someone who constantly requires 6 lpm.Jane uses a respironics evergo and others may. Its a very good piece ofequipment if you can fit within its limitations. It is pulse only andgoes up to 6 lpm. So it can not be used for sleep or for anyone who canonly function on continuous. It works off AC and DC and at 2 lpm willlast nearly 8 hours on two fully charged batteries. Or 4 lpm for 4hours.If one needs continuous for sleep, the only portable that provides thatis the Sequal Eclipse. It is heavier than the Evergo although any ofthem are pretty much going to require a cart. It has continuous of up to3 lpm to go with pulse of 6 lpm.As to the costs for monthly concentrator rentals you are correct thatthey providers are charging quite a bit for little service on normallyrather old and inexpensive concentrators. I think most people believethey are more expensive than they are. I have a personal RespironicsEverflo that I own just for places like my cousins house with miles ofsteps where getting my reservoir inside is difficult. I paid around $700for it new. Reconditioned units are available for half of that. Thereare units under $600 new. However, the cost to the oxygen companies istanks and deliveries. For my reservoir and my liquid portable as well asproviding travel reservoirs when needed (although I also own own a smallone of my own they fill for me) the rate they charge medicare is quitereasonable. Knowing in case of problems I have 24/7 service is quite acomfort as well.> > > >> > > > I was diagnosed with IPF in March 2005. I'm unable to do things> > > > without my oxygen. When I try without the oxygen, it's> difficult> > and I> > > > cough uncontrollably. So the doctor put me on 3 liters 24/7. I> > take a> > > > portable tank with me when I go out.> > > >> > > > The cough is very annoying. There are times that I'm unable to> > speak> > > > because I'm unable to breath and the coughing. When I cough, I> > have a> > > > burning sensation in the back of my throat. The pain goes into> > the> > > > base of my neck (below my adam's apple).> > > >> > > > I'm going to my PCP next week to discuss this. Does anyone> else> > have> > > > this type of problem?> > > >> > > > Thanks for your thoughts.> > > >> > > > > > > >> > > >> > > > ------------ --------- --------- --------- --------- ---------> -> > -------> > > >> > > >> > > > No virus found in this incoming message.> > > > Checked by AVG -�http://www.avg.�com> > > > Version: 8.0.176 / Virus Database: 270.10.13/1916 - Release> > Date: 1/26/2009 7:08 AM> > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2009 Report Share Posted January 28, 2009  Peggy... first of all I think your requirements are higher than mine. This concentrator goes to 6. It's called a VisionAire. Little thing, about 10 W and 24 H. I really enjoy the quiet of it. I can hear it in a second bedroom but only if I turn off TV and listen hard... MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! � Re: Cronic cough MargaretI doubt seriously that her doctor specified which of the portables, butrather did specify flow. The oxygen companies do often provideinappropriate equipment. For the record, doctors offices are oftenrather uninformed too. I realize you've only been here a short while butpeople are provided equipment that isn't best for them all the time andeven told certain equipment doesn't exist sometimes. Doctors offices arenot equipment knowledgeable sometimes and oxygen delivery people oftendeliver what they are use to or have handy or the least that willpossibly work. They deliver Helios Plus all the time to people whoreally need Marathons. They deliver concentrators that only go to 6 lpmwhen and act like there is no higher because thats all they happen tohave at that moment. They are use to COPD patients far more than PFpatients.Marathon is prescribed typically for those who are on flows no greaterthan 4 lpm most of the time as it has demand to 4 lpm and continuous to6 lpm. At 6 lpm, in addition to its short life it's inclined to freezeand it's rather uncomfortable blowing it's maximum. It also provides noroom for more if required. The Companion 1000T or the Caire StrollerHigh Flow are designed for patients requiring more flow. They arecontinuous only and go up to 15 lpm. So, I stand by my statement of theappropriate equipment for someone who constantly requires 6 lpm.Jane uses a respironics evergo and others may. Its a very good piece ofequipment if you can fit within its limitations. It is pulse only andgoes up to 6 lpm. So it can not be used for sleep or for anyone who canonly function on continuous. It works off AC and DC and at 2 lpm willlast nearly 8 hours on two fully charged batteries. Or 4 lpm for 4hours.If one needs continuous for sleep, the only portable that provides thatis the Sequal Eclipse. It is heavier than the Evergo although any ofthem are pretty much going to require a cart. It has continuous of up to3 lpm to go with pulse of 6 lpm.As to the costs for monthly concentrator rentals you are correct thatthey providers are charging quite a bit for little service on normallyrather old and inexpensive concentrators. I think most people believethey are more expensive than they are. I have a personal RespironicsEverflo that I own just for places like my cousins house with miles ofsteps where getting my reservoir inside is difficult. I paid around $700for it new. Reconditioned units are available for half of that. Thereare units under $600 new. However, the cost to the oxygen companies istanks and deliveries. For my reservoir and my liquid portable as well asproviding travel reservoirs when needed (although I also own own a smallone of my own they fill for me) the rate they charge medicare is quitereasonable. Knowing in case of problems I have 24/7 service is quite acomfort as well.> > > >> > > > I was diagnosed with IPF in March 2005. I'm unable to do things> > > > without my oxygen. When I try without the oxygen, it's> difficult> > and I> > > > cough uncontrollably. So the doctor put me on 3 liters 24/7. I> > take a> > > > portable tank with me when I go out.> > > >> > > > The cough is very annoying. There are times that I'm unable to> > speak> > > > because I'm unable to breath and the coughing. When I cough, I> > have a> > > > burning sensation in the back of my throat. The pain goes into> > the> > > > base of my neck (below my adam's apple).> > > >> > > > I'm going to my PCP next week to discuss this. Does anyone> else> > have> > > > this type of problem?> > > >> > > > Thanks for your thoughts.> > > >> > > > > > > >> > > >> > > > ------------ --------- --------- --------- --------- ---------> -> > -------> > > >> > > >> > > > No virus found in this incoming message.> > > > Checked by AVG -�http://www.avg.�com> > > > Version: 8.0.176 / Virus Database: 270.10.13/1916 - Release> > Date: 1/26/2009 7:08 AM> > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2009 Report Share Posted January 28, 2009 Bruce, My doctor is quite informed and has the different kinds of equipment in his office to demonstrate what is available and how it works and is used so that he can prescribe what he and his patients think would be the best combinations of equipment for them with regards to different needs and lifestyles. He has had training and worked in the major lung centers. Thank God he chose to come to Anchorage. I have consulted with Mayo and the Cleavland Clinic and they concur that what he is doing for me is the best available. I do know that there are uninformed consumers that do not know to ask the right questions. They many times also do not know what they should be receiving with their equipment and that they should be given a full demonstration of how to use it and care for it; that they are entitled to new tubing, cannula, filters and what other specifics their equipment requires at specific intervals. The provider should not leave their home or let them out of their office until they are competently trained on their equipment. My supplier is staffed by respiratory therapist that do the training. I am notified of various seminars at the major centers and teleconference in for question and answer sessions where the doctors present their research and have discussion sessions. The patients can attend for free and receive their own syllabus to sit in on all sessions and have the panel address their specific questions. There was one in November. The patients can be fully informed and assured that the doctors are not holding anything back from them. I an quite happy with my equipment and service. To: Breathe-Support Sent: Wednesday, January 28, 2009 8:33:13 AMSubject: Re: Re: Cronic cough Bruce ... long story short...I had my concentrator changed out for a quieter one. We live in an upstairs apt, as you know, and not only was the noise a bother for nighttime sleeping (can't get very far away from it) but the neighbors downstairs got the reverberation. .. Second and third ones were a bit quieter but did not fill the bill. Neighbor has a concentrator that is so quiet she keeps it right by her chair! I wanted what she had, a Resperionics. ..well Lincare said they didn't have that and couldn't get it...I said I would contact "the other company" and see if my insurance would cover w/them... three days later here came Lincare w/ a new concentrator and it's nice and quiet. Doesn't even have to have the filter cleaned...everythin g is internal. BTW...my pulmodude didn't even know what the PFLEX trainer WAS. Never heard of it but he did send an Rx after I gave him the website. Yeah, we keep on keepin' on 'till we get what we need! MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: Cronic cough MargaretI doubt seriously that her doctor specified which of the portables, butrather did specify flow. The oxygen companies do often provideinappropriate equipment. For the record, doctors offices are oftenrather uninformed too. I realize you've only been here a short while butpeople are provided equipment that isn't best for them all the time andeven told certain equipment doesn't exist sometimes. Doctors offices arenot equipment knowledgeable sometimes and oxygen delivery people oftendeliver what they are use to or have handy or the least that willpossibly work. They deliver Helios Plus all the time to people whoreally need Marathons. They deliver concentrators that only go to 6 lpmwhen and act like there is no higher because thats all they happen tohave at that moment. They are use to COPD patients far more than PFpatients.Marathon is prescribed typically for those who are on flows no greaterthan 4 lpm most of the time as it has demand to 4 lpm and continuous to6 lpm. At 6 lpm, in addition to its short life it's inclined to freezeand it's rather uncomfortable blowing it's maximum. It also provides noroom for more if required. The Companion 1000T or the Caire StrollerHigh Flow are designed for patients requiring more flow. They arecontinuous only and go up to 15 lpm. So, I stand by my statement of theappropriate equipment for someone who constantly requires 6 lpm.Jane uses a respironics evergo and others may. Its a very good piece ofequipment if you can fit within its limitations. It is pulse only andgoes up to 6 lpm. So it can not be used for sleep or for anyone who canonly function on continuous. It works off AC and DC and at 2 lpm willlast nearly 8 hours on two fully charged batteries. Or 4 lpm for 4hours.If one needs continuous for sleep, the only portable that provides thatis the Sequal Eclipse. It is heavier than the Evergo although any ofthem are pretty much going to require a cart. It has continuous of up to3 lpm to go with pulse of 6 lpm.As to the costs for monthly concentrator rentals you are correct thatthey providers are charging quite a bit for little service on normallyrather old and inexpensive concentrators. I think most people believethey are more expensive than they are. I have a personal RespironicsEverflo that I own just for places like my cousins house with miles ofsteps where getting my reservoir inside is difficult. I paid around $700for it new. Reconditioned units are available for half of that. Thereare units under $600 new. However, the cost to the oxygen companies istanks and deliveries. For my reservoir and my liquid portable as well asproviding travel reservoirs when needed (although I also own own a smallone of my own they fill for me) the rate they charge medicare is quitereasonable. Knowing in case of problems I have 24/7 service is quite acomfort as well.> > > >> > > > I was diagnosed with IPF in March 2005. I'm unable to do things> > > > without my oxygen. When I try without the oxygen, it's> difficult> > and I> > > > cough uncontrollably. So the doctor put me on 3 liters 24/7. I> > take a> > > > portable tank with me when I go out.> > > >> > > > The cough is very annoying. There are times that I'm unable to> > speak> > > > because I'm unable to breath and the coughing. When I cough, I> > have a> > > > burning sensation in the back of my throat. The pain goes into> > the> > > > base of my neck (below my adam's apple).> > > >> > > > I'm going to my PCP next week to discuss this. Does anyone> else> > have> > > > this type of problem?> > > >> > > > Thanks for your thoughts.> > > >> > > > > > > >> > > >> > > > ------------ --------- --------- --------- --------- ---------> -> > -------> > > >> > > >> > > > No virus found in this incoming message.> > > > Checked by AVG - http://www.avg. com> > > > Version: 8.0.176 / Virus Database: 270.10.13/1916 - Release> > Date: 1/26/2009 7:08 AM> > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2009 Report Share Posted January 28, 2009 Margaret, All I can say is WOW! I've never heard of a pulmonologist who goes to the lengths that yours does to insure you have the correct equipment. In my experience most pulmos write a script for O2 and specify perhaps a liter flow and leave it up to the O2 supplier to bring whatever equipment they may. That's what happened to me initially and I know I'm not the only one. It took time for me to educate myself about the pros and cons of different options. Trial and error, you know the drill. Count your blessings Margaret! You have an awesome pulmo. Beth in North Carolina Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Wednesday, January 28, 2009 7:23:20 PMSubject: Re: Re: Cronic cough Bruce, My doctor is quite informed and has the different kinds of equipment in his office to demonstrate what is available and how it works and is used so that he can prescribe what he and his patients think would be the best combinations of equipment for them with regards to different needs and lifestyles. He has had training and worked in the major lung centers. Thank God he chose to come to Anchorage. I have consulted with Mayo and the Cleavland Clinic and they concur that what he is doing for me is the best available. I do know that there are uninformed consumers that do not know to ask the right questions. They many times also do not know what they should be receiving with their equipment and that they should be given a full demonstration of how to use it and care for it; that they are entitled to new tubing, cannula, filters and what other specifics their equipment requires at specific intervals. The provider should not leave their home or let them out of their office until they are competently trained on their equipment. My supplier is staffed by respiratory therapist that do the training. I am notified of various seminars at the major centers and teleconference in for question and answer sessions where the doctors present their research and have discussion sessions. The patients can attend for free and receive their own syllabus to sit in on all sessions and have the panel address their specific questions. There was one in November. The patients can be fully informed and assured that the doctors are not holding anything back from them. I an quite happy with my equipment and service. From: Sher Bauman <bofus (AT) wbcable (DOT) net>To: Breathe-Support@ yahoogroups. comSent: Wednesday, January 28, 2009 8:33:13 AMSubject: Re: Re: Cronic cough Bruce ... long story short...I had my concentrator changed out for a quieter one. We live in an upstairs apt, as you know, and not only was the noise a bother for nighttime sleeping (can't get very far away from it) but the neighbors downstairs got the reverberation. .. Second and third ones were a bit quieter but did not fill the bill. Neighbor has a concentrator that is so quiet she keeps it right by her chair! I wanted what she had, a Resperionics. ..well Lincare said they didn't have that and couldn't get it...I said I would contact "the other company" and see if my insurance would cover w/them... three days later here came Lincare w/ a new concentrator and it's nice and quiet. Doesn't even have to have the filter cleaned...everythin g is internal. BTW...my pulmodude didn't even know what the PFLEX trainer WAS. Never heard of it but he did send an Rx after I gave him the website. Yeah, we keep on keepin' on 'till we get what we need! MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: Cronic cough MargaretI doubt seriously that her doctor specified which of the portables, butrather did specify flow. The oxygen companies do often provideinappropriate equipment. For the record, doctors offices are oftenrather uninformed too. I realize you've only been here a short while butpeople are provided equipment that isn't best for them all the time andeven told certain equipment doesn't exist sometimes. Doctors offices arenot equipment knowledgeable sometimes and oxygen delivery people oftendeliver what they are use to or have handy or the least that willpossibly work. They deliver Helios Plus all the time to people whoreally need Marathons. They deliver concentrators that only go to 6 lpmwhen and act like there is no higher because thats all they happen tohave at that moment. They are use to COPD patients far more than PFpatients.Marathon is prescribed typically for those who are on flows no greaterthan 4 lpm most of the time as it has demand to 4 lpm and continuous to6 lpm. At 6 lpm, in addition to its short life it's inclined to freezeand it's rather uncomfortable blowing it's maximum. It also provides noroom for more if required. The Companion 1000T or the Caire StrollerHigh Flow are designed for patients requiring more flow. They arecontinuous only and go up to 15 lpm. So, I stand by my statement of theappropriate equipment for someone who constantly requires 6 lpm.Jane uses a respironics evergo and others may. Its a very good piece ofequipment if you can fit within its limitations. It is pulse only andgoes up to 6 lpm. So it can not be used for sleep or for anyone who canonly function on continuous. It works off AC and DC and at 2 lpm willlast nearly 8 hours on two fully charged batteries. Or 4 lpm for 4hours.If one needs continuous for sleep, the only portable that provides thatis the Sequal Eclipse. It is heavier than the Evergo although any ofthem are pretty much going to require a cart. It has continuous of up to3 lpm to go with pulse of 6 lpm.As to the costs for monthly concentrator rentals you are correct thatthey providers are charging quite a bit for little service on normallyrather old and inexpensive concentrators. I think most people believethey are more expensive than they are. I have a personal RespironicsEverflo that I own just for places like my cousins house with miles ofsteps where getting my reservoir inside is difficult. I paid around $700for it new. Reconditioned units are available for half of that. Thereare units under $600 new. However, the cost to the oxygen companies istanks and deliveries. For my reservoir and my liquid portable as well asproviding travel reservoirs when needed (although I also own own a smallone of my own they fill for me) the rate they charge medicare is quitereasonable. Knowing in case of problems I have 24/7 service is quite acomfort as well.> > > >> > > > I was diagnosed with IPF in March 2005. I'm unable to do things> > > > without my oxygen. When I try without the oxygen, it's> difficult> > and I> > > > cough uncontrollably. So the doctor put me on 3 liters 24/7. I> > take a> > > > portable tank with me when I go out.> > > >> > > > The cough is very annoying. There are times that I'm unable to> > speak> > > > because I'm unable to breath and the coughing. When I cough, I> > have a> > > > burning sensation in the back of my throat. The pain goes into> > the> > > > base of my neck (below my adam's apple).> > > >> > > > I'm going to my PCP next week to discuss this. Does anyone> else> > have> > > > this type of problem?> > > >> > > > Thanks for your thoughts.> > > >> > > > > > > >> > > >> > > > ------------ --------- --------- --------- --------- ---------> -> > -------> > > >> > > >> > > > No virus found in this incoming message.> > > > Checked by AVG - http://www.avg. com> > > > Version: 8.0.176 / Virus Database: 270.10.13/1916 - Release> > Date: 1/26/2009 7:08 AM> > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2009 Report Share Posted January 28, 2009 Margaret I never implied anything about your doctor not being informed. I did state that many are poorly informed about available oxygen alternatives as are those in their offices who actually place the orders. Also, while respiratory techs do play major roles in many oxygen providers, I've known some who didn't even know what PF was. I've also known many oxygen setups to be without a respiratory tech involved. You're very fortunate. However, many others have to fight for the right equipment to meet their needs. If a doctor simply prescribes a certain liter flow, the provider in most cases will deliver a concentrator and gas canisters and never mention liquid as an option. We've had people here over time given some of the most false information you can imagine. You'll be shocked at it as time goes on. We've had people told they had to move less because there were no concentrators that went over 6 lpm. We've had people told medicare wouldn't pay for liquid. We've had people given Helios Plus and never told Helios Marathon existed to double their range on a portable. We've even had people told by their provider they were using too much oxygen and a delivery person deciding on his own to turn their machine down. Then when they objected he turned it up to its highest level and walked out the door. This goes beyond oxygen too. We had a beloved member delivered a hospital bed with a mattress on it that retailed for $89 so probably was a $40 mattress, expecting them to spend their days and nights on that. They advocated and got help going to the provider and insurer and got a decent mattress. As to cannulas and alternatives there, most providers have standard items they supply unless one asks for something different by specifying it. Homefill systems are excellent for many but rarely offered by suppliers. The largest oxygen provider in the country is rated unsatisfactory and F by the two different Better Business Bureaus covering their headquarters. Now some people get good service from the local office of this company that serves them. It's fortunate your experiences have been so good and unfortunate thats not always the case. I have a very responsive local oxygen provider but I'm also lucky to be in a market with over 200 to choose from. I can find doctors familiar with my disease but I'm in a major metropolitan area and found the right ones. Fortunately, I've not had to suffer the problems many others have. > > > > > > > > > > I was diagnosed with IPF in March 2005. I'm unable to do things > > > > > without my oxygen. When I try without the oxygen, it's > > difficult > > > and I > > > > > cough uncontrollably. So the doctor put me on 3 liters 24/7. I > > > take a > > > > > portable tank with me when I go out. > > > > > > > > > > The cough is very annoying. There are times that I'm unable to > > > speak > > > > > because I'm unable to breath and the coughing. When I cough, I > > > have a > > > > > burning sensation in the back of my throat. The pain goes into > > > the > > > > > base of my neck (below my adam's apple). > > > > > > > > > > I'm going to my PCP next week to discuss this. Does anyone > > else > > > have > > > > > this type of problem? > > > > > > > > > > Thanks for your thoughts. > > > > > > > > > > > > > > > > > > > > > > > > > ------------ --------- --------- --------- --------- --------- > > - > > > ------- > > > > > > > > > > > > > > > No virus found in this incoming message. > > > > > Checked by AVG - http://www.avg. com > > > > > Version: 8.0.176 / Virus Database: 270.10.13/1916 - Release > > > Date: 1/26/2009 7:08 AM > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2009 Report Share Posted January 29, 2009 the stress incontinence is always worse when I have a lung flare up getting stock in poise is a great idea Pink Joyce IPF 3/06 Pennsylvania Donate Life Subject: Re: Cronic coughTo: Breathe-Support Date: Wednesday, January 28, 2009, 12:34 PM Sher, I haven't either at least not in that sense. I have "stress incontinence" where I have a tendency to "leak" urine when I cough hard. I think that's fairly typical for alot of women on the board. There are times when I feel like I should own stock in "Poise" pads. But I haven't ever had my large muscles "let go" as Margaret is talking about. It's not really that wonders never cease, it's more like the horrors never cease huh? LOL Beth in North Carolina Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Sher Bauman <bofus (AT) wbcable (DOT) net>To: Breathe-Support@ yahoogroups. comSent: Wednesday, January 28, 2009 12:01:20 PMSubject: Re: Cronic cough Margaret...will wonders never cease?? I'm almost afraid to pursue the issue but I've never heard of anyone being "incontinent" due to low O2. What's next! MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Cronic cough Zhi, question about the marathon; do i remember you having one.. i know someone on the board does. received one last week with no directions; havent had the opportunity to use yet.. went to use the other day and found it was empty; then my brain somewhere thought it heard it does evaporate.. so now need to remember to fill before leaving house. Can you or anyone give me any info. How long does it last on 6 cont. thanks for any feedback Patti, Cherry Hill, NJ, ipf 7'06, raynauds, scleroderma, PH 2'07> >> > I was diagnosed with IPF in March 2005. I'm unable to do things> > without my oxygen. When I try without the oxygen, it's difficult and I> > cough uncontrollably. So the doctor put me on 3 liters 24/7. I take a> > portable tank with me when I go out.> >> > The cough is very annoying. There are times that I'm unable to speak> > because I'm unable to breath and the coughing. When I cough, I have a> > burning sensation in the back of my throat. The pain goes into the> > base of my neck (below my adam's apple).> >> > I'm going to my PCP next week to discuss this. Does anyone else have> > this type of problem?> >> > Thanks for your thoughts.> >> > > >> > > > ------------ --------- --------- --------- --------- --------- --------> >> >> > No virus found in this incoming message.> > Checked by AVG - http://www.avg. com > > Version: 8.0.176 / Virus Database: 270.10.13/1916 - Release Date: 1/26/2009 7:08 AM> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2009 Report Share Posted January 29, 2009 Margaret i used to wish i owned my own O2 equipment. but i have learned that with this disease, the o2 needs are constantly changing and increasing it is quite possible that a POC from 2 years ago, would not be adequate for me today depending on the lpms and pulse vs continuous i used a Helios for what seems like a long time, then it was not enough now I use a Marathon--that goes to Continuous 6 I keep meeting people in person and on-line who use double digit lpm's i even met a lady with two portables and two hoses connected into one tube for the lpm's that she needs so in the case of pulmonary fibrosis, renting is probably the best option Pink Joyce IPF 3/06 Pennsylvania Donate Life Subject: Re: Re: Cronic coughTo: Breathe-Support Date: Wednesday, January 28, 2009, 4:46 AM Patty, Anyone, Me again, duhhh... why didn't I just think to ask you if you could call the people you got it from and ask them to bring you the directions or send them, however it came to you. That should be simple if you got it from the people who deliver your tanks... Still, you could probably look up the directions on line with your model number and print them out. I have done that with other products. Good luck. Don't let Bruce spoil your fun if you didn't pay for it out of pocket, a little short amount of freedom is better than dragging a cart around! I don't think your doctor would have given you a prescription for anything that was unsuitable for you! ) Also, does anyone use a Respironics Evergo pack that uses rechargeable batteries? I certainly would like a used one for travel. I bought my travel suitcase oxygen compressor that can be plugged into an alternator in the car and into a regular wall plug elsewhere. It cost less than my home rental unit cost per month and is quieter. This rental business is an outrageous fraud to charge so much to insurance for something that could be bought out of pocket and reimbursed for a fraction of the cost! I have never required any maintenance that I could not do myself and they charge a separate charge for that each month...ridiculous! Margaret From: friend.patti <friend.patti@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Tuesday, January 27, 2009 9:01:35 PMSubject: Re: Cronic cough Margaret thanks for the info.. they didnt leave the info. guess they thought i knew what i was doing. lol.. i thought this may give me more incentive to behave myself and less weight to carry around. I have 2 large cylinder liquid tanks in the house. patti nj> > >> > > I was diagnosed with IPF in March 2005. I'm unable to do things> > > without my oxygen. When I try without the oxygen, it's difficult > and I> > > cough uncontrollably. So the doctor put me on 3 liters 24/7. I > take a> > > portable tank with me when I go out.> > >> > > The cough is very annoying. There are times that I'm unable to > speak> > > because I'm unable to breath and the coughing. When I cough, I > have a> > > burning sensation in the back of my throat. The pain goes into > the> > > base of my neck (below my adam's apple).> > >> > > I'm going to my PCP next week to discuss this. Does anyone else > have> > > this type of problem?> > >> > > Thanks for your thoughts.> > >> > > > > >> > > > > > ------------ --------- --------- --------- --------- ----------> -------> > >> > >> > > No virus found in this incoming message.> > > Checked by AVG - http://www.avg. com > > > Version: 8.0.176 / Virus Database: 270.10.13/1916 - Release > Date: 1/26/2009 7:08 AM> > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2009 Report Share Posted January 29, 2009 Margaret i used to wish i owned my own O2 equipment. but i have learned that with this disease, the o2 needs are constantly changing and increasing it is quite possible that a POC from 2 years ago, would not be adequate for me today depending on the lpms and pulse vs continuous i used a Helios for what seems like a long time, then it was not enough now I use a Marathon--that goes to Continuous 6 I keep meeting people in person and on-line who use double digit lpm's i even met a lady with two portables and two hoses connected into one tube for the lpm's that she needs so in the case of pulmonary fibrosis, renting is probably the best option Pink Joyce IPF 3/06 Pennsylvania Donate Life Subject: Re: Re: Cronic coughTo: Breathe-Support Date: Wednesday, January 28, 2009, 4:46 AM Patty, Anyone, Me again, duhhh... why didn't I just think to ask you if you could call the people you got it from and ask them to bring you the directions or send them, however it came to you. That should be simple if you got it from the people who deliver your tanks... Still, you could probably look up the directions on line with your model number and print them out. I have done that with other products. Good luck. Don't let Bruce spoil your fun if you didn't pay for it out of pocket, a little short amount of freedom is better than dragging a cart around! I don't think your doctor would have given you a prescription for anything that was unsuitable for you! ) Also, does anyone use a Respironics Evergo pack that uses rechargeable batteries? I certainly would like a used one for travel. I bought my travel suitcase oxygen compressor that can be plugged into an alternator in the car and into a regular wall plug elsewhere. It cost less than my home rental unit cost per month and is quieter. This rental business is an outrageous fraud to charge so much to insurance for something that could be bought out of pocket and reimbursed for a fraction of the cost! I have never required any maintenance that I could not do myself and they charge a separate charge for that each month...ridiculous! Margaret From: friend.patti <friend.patti@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Tuesday, January 27, 2009 9:01:35 PMSubject: Re: Cronic cough Margaret thanks for the info.. they didnt leave the info. guess they thought i knew what i was doing. lol.. i thought this may give me more incentive to behave myself and less weight to carry around. I have 2 large cylinder liquid tanks in the house. patti nj> > >> > > I was diagnosed with IPF in March 2005. I'm unable to do things> > > without my oxygen. When I try without the oxygen, it's difficult > and I> > > cough uncontrollably. So the doctor put me on 3 liters 24/7. I > take a> > > portable tank with me when I go out.> > >> > > The cough is very annoying. There are times that I'm unable to > speak> > > because I'm unable to breath and the coughing. When I cough, I > have a> > > burning sensation in the back of my throat. The pain goes into > the> > > base of my neck (below my adam's apple).> > >> > > I'm going to my PCP next week to discuss this. Does anyone else > have> > > this type of problem?> > >> > > Thanks for your thoughts.> > >> > > > > >> > > > > > ------------ --------- --------- --------- --------- ----------> -------> > >> > >> > > No virus found in this incoming message.> > > Checked by AVG - http://www.avg. com > > > Version: 8.0.176 / Virus Database: 270.10.13/1916 - Release > Date: 1/26/2009 7:08 AM> > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2009 Report Share Posted January 29, 2009 the lady with the 2 portables uses what looks like a companion or a caire stoller, i didn't fine out which kind, it wasn't necessary for me to know, but that's what i remember seeing i was amazed by the two tubes connected into one canula, and the high lpm's she needs Pink Joyce IPF 3/06 Pennsylvania Donate Life Subject: Re: Cronic coughTo: Breathe-Support Date: Wednesday, January 28, 2009, 9:14 AM MargaretI doubt seriously that her doctor specified which of the portables, butrather did specify flow. The oxygen companies do often provideinappropriate equipment. For the record, doctors offices are oftenrather uninformed too. I realize you've only been here a short while butpeople are provided equipment that isn't best for them all the time andeven told certain equipment doesn't exist sometimes. Doctors offices arenot equipment knowledgeable sometimes and oxygen delivery people oftendeliver what they are use to or have handy or the least that willpossibly work. They deliver Helios Plus all the time to people whoreally need Marathons. They deliver concentrators that only go to 6 lpmwhen and act like there is no higher because thats all they happen tohave at that moment. They are use to COPD patients far more than PFpatients.Marathon is prescribed typically for those who are on flows no greaterthan 4 lpm most of the time as it has demand to 4 lpm and continuous to6 lpm. At 6 lpm, in addition to its short life it's inclined to freezeand it's rather uncomfortable blowing it's maximum. It also provides noroom for more if required. The Companion 1000T or the Caire StrollerHigh Flow are designed for patients requiring more flow. They arecontinuous only and go up to 15 lpm. So, I stand by my statement of theappropriate equipment for someone who constantly requires 6 lpm.Jane uses a respironics evergo and others may. Its a very good piece ofequipment if you can fit within its limitations. It is pulse only andgoes up to 6 lpm. So it can not be used for sleep or for anyone who canonly function on continuous. It works off AC and DC and at 2 lpm willlast nearly 8 hours on two fully charged batteries. Or 4 lpm for 4hours.If one needs continuous for sleep, the only portable that provides thatis the Sequal Eclipse. It is heavier than the Evergo although any ofthem are pretty much going to require a cart. It has continuous of up to3 lpm to go with pulse of 6 lpm.As to the costs for monthly concentrator rentals you are correct thatthey providers are charging quite a bit for little service on normallyrather old and inexpensive concentrators. I think most people believethey are more expensive than they are. I have a personal RespironicsEverflo that I own just for places like my cousins house with miles ofsteps where getting my reservoir inside is difficult. I paid around $700for it new. Reconditioned units are available for half of that. Thereare units under $600 new. However, the cost to the oxygen companies istanks and deliveries. For my reservoir and my liquid portable as well asproviding travel reservoirs when needed (although I also own own a smallone of my own they fill for me) the rate they charge medicare is quitereasonable. Knowing in case of problems I have 24/7 service is quite acomfort as well.> > > >> > > > I was diagnosed with IPF in March 2005. I'm unable to do things> > > > without my oxygen. When I try without the oxygen, it's> difficult> > and I> > > > cough uncontrollably. So the doctor put me on 3 liters 24/7. I> > take a> > > > portable tank with me when I go out.> > > >> > > > The cough is very annoying. There are times that I'm unable to> > speak> > > > because I'm unable to breath and the coughing. When I cough, I> > have a> > > > burning sensation in the back of my throat. The pain goes into> > the> > > > base of my neck (below my adam's apple).> > > >> > > > I'm going to my PCP next week to discuss this. Does anyone> else> > have> > > > this type of problem?> > > >> > > > Thanks for your thoughts.> > > >> > > > > > > >> > > >> > > > ------------ --------- --------- --------- --------- ---------> -> > -------> > > >> > > >> > > > No virus found in this incoming message.> > > > Checked by AVG - http://www.avg. com> > > > Version: 8.0.176 / Virus Database: 270.10.13/1916 - Release> > Date: 1/26/2009 7:08 AM> > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2009 Report Share Posted January 29, 2009 MB...the pulmodudes/dettes do the same in my area too. Write the Rx and then the O2 provider and RT provide what they have to give us what the Rx requires. Drs can't possible know what each O2 provider carries in inventory... Being our own best advocate is what we learn here and I do ok so far. Hope everyone else has what they need. MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: Cronic cough MargaretI doubt seriously that her doctor specified which of the portables, butrather did specify flow. The oxygen companies do often provideinappropriate equipment. For the record, doctors offices are oftenrather uninformed too. I realize you've only been here a short while butpeople are provided equipment that isn't best for them all the time andeven told certain equipment doesn't exist sometimes. Doctors offices arenot equipment knowledgeable sometimes and oxygen delivery people oftendeliver what they are use to or have handy or the least that willpossibly work. They deliver Helios Plus all the time to people whoreally need Marathons. They deliver concentrators that only go to 6 lpmwhen and act like there is no higher because thats all they happen tohave at that moment. They are use to COPD patients far more than PFpatients.Marathon is prescribed typically for those who are on flows no greaterthan 4 lpm most of the time as it has demand to 4 lpm and continuous to6 lpm. At 6 lpm, in addition to its short life it's inclined to freezeand it's rather uncomfortable blowing it's maximum. It also provides noroom for more if required. The Companion 1000T or the Caire StrollerHigh Flow are designed for patients requiring more flow. They arecontinuous only and go up to 15 lpm. So, I stand by my statement of theappropriate equipment for someone who constantly requires 6 lpm.Jane uses a respironics evergo and others may. Its a very good piece ofequipment if you can fit within its limitations. It is pulse only andgoes up to 6 lpm. So it can not be used for sleep or for anyone who canonly function on continuous. It works off AC and DC and at 2 lpm willlast nearly 8 hours on two fully charged batteries. Or 4 lpm for 4hours.If one needs continuous for sleep, the only portable that provides thatis the Sequal Eclipse. It is heavier than the Evergo although any ofthem are pretty much going to require a cart. It has continuous of up to3 lpm to go with pulse of 6 lpm.As to the costs for monthly concentrator rentals you are correct thatthey providers are charging quite a bit for little service on normallyrather old and inexpensive concentrators. I think most people believethey are more expensive than they are. I have a personal RespironicsEverflo that I own just for places like my cousins house with miles ofsteps where getting my reservoir inside is difficult. I paid around $700for it new. Reconditioned units are available for half of that. Thereare units under $600 new. However, the cost to the oxygen companies istanks and deliveries. For my reservoir and my liquid portable as well asproviding travel reservoirs when needed (although I also own own a smallone of my own they fill for me) the rate they charge medicare is quitereasonable. Knowing in case of problems I have 24/7 service is quite acomfort as well.> > > >> > > > I was diagnosed with IPF in March 2005. I'm unable to do things> > > > without my oxygen. When I try without the oxygen, it's> difficult> > and I> > > > cough uncontrollably. So the doctor put me on 3 liters 24/7. I> > take a> > > > portable tank with me when I go out.> > > >> > > > The cough is very annoying. There are times that I'm unable to> > speak> > > > because I'm unable to breath and the coughing. When I cough, I> > have a> > > > burning sensation in the back of my throat. The pain goes into> > the> > > > base of my neck (below my adam's apple).> > > >> > > > I'm going to my PCP next week to discuss this. Does anyone> else> > have> > > > this type of problem?> > > >> > > > Thanks for your thoughts.> > > >> > > > > > > >> > > >> > > > ------------ --------- --------- --------- --------- ---------> -> > -------> > > >> > > >> > > > No virus found in this incoming message.> > > > Checked by AVG - http://www.avg. com> > > > Version: 8.0.176 / Virus Database: 270.10.13/1916 - Release> > Date: 1/26/2009 7:08 AM> > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2009 Report Share Posted January 29, 2009 I just came from my hair appt which I had to cut short, because I had 2 bad coughing spells and I was embarrassing myself and I felt making customers uneasy. So I only got half my hair colored J_ I kept using the rescue inhaler and finally it hasstopped. I have never had trouble with the smells before, but I am also getting over ( hope) an upper respiratory infection (all in my head and upper airways). I have been using a nebulizer 3 times a day to try to get this stuff out, and I guess it picked of all times to come up. I just felt drained and I am now trying to keep from the tears and feeling sorry for myself. Thanks for listening. Sue D. 63 yr old, Fibrotic NSIP dx 9/07, VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2009 Report Share Posted January 29, 2009 I just came from my hair appt which I had to cut short, because I had 2 bad coughing spells and I was embarrassing myself and I felt making customers uneasy. So I only got half my hair colored J_ I kept using the rescue inhaler and finally it hasstopped. I have never had trouble with the smells before, but I am also getting over ( hope) an upper respiratory infection (all in my head and upper airways). I have been using a nebulizer 3 times a day to try to get this stuff out, and I guess it picked of all times to come up. I just felt drained and I am now trying to keep from the tears and feeling sorry for myself. Thanks for listening. Sue D. 63 yr old, Fibrotic NSIP dx 9/07, VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2009 Report Share Posted January 29, 2009 Sue, If you feel like you need to cry, let it out. Keeping it in only delays it, it won't make it go away. I'm sorry you had such a rough day. It's so frustrating and we've all been there. Hopefully in a few days you'll be feeling well enough to go back and get your hair finished. Consider yourself hugged!! Beth in North Carolina Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Thursday, January 29, 2009 6:08:52 PMSubject: Re: Cronic cough I just came from my hair appt which I had to cut short, because I had 2 bad coughing spells and I was embarrassing myself and I felt making customers uneasy. So I only got half my hair colored J_ I kept using the rescue inhaler and finally it hasstopped. I have never had trouble with the smells before, but I am also getting over ( hope) an upper respiratory infection (all in my head and upper airways). I have been using a nebulizer 3 times a day to try to get this stuff out, and I guess it picked of all times to come up. I just felt drained and I am now trying to keep from the tears and feeling sorry for myself. Thanks for listening. Sue D. 63 yr old, Fibrotic NSIP dx 9/07, VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2009 Report Share Posted January 29, 2009 Sue, Whenever I need my hair cut and colored ( about every 5-6 weeks) the hairdresser makes certain that no perms or other procedures are being done when I'm there. It's a very small shop so there usually aren't too many conflicts. If there is one I change the appointment.That stuff really bothers my breathing, as do any scented products, candles, cleaning products, perfumes, shampoos etc.The bath and body shops kill me! The only aromas that do not bother me are food!!! Some of my favorites are the smell of cooking garlic and onion, baking bread, citrus of any kind. Z fibriotic NSIP/05 Z 65, fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Vinca Minor-periwinkle is my flower Sue Dassel wrote: I just came from my hair appt which I had to cut short, because I had 2 bad coughing spells and I was embarrassing myself and I felt making customers uneasy. So I only got half my hair colored J_ I kept using the rescue inhaler and finally it hasstopped. I have never had trouble with the smells before, but I am also getting over ( hope) an upper respiratory infection (all in my head and upper airways). I have been using a nebulizer 3 times a day to try to get this stuff out, and I guess it picked of all times to come up. I just felt drained and I am now trying to keep from the tears and feeling sorry for myself. Thanks for listening. Sue D. 63 yr old, Fibrotic NSIP dx 9/07, VA No virus found in this incoming message. Checked by AVG - http://www.avg.com Version: 8.0.233 / Virus Database: 270.10.15/1922 - Release Date: 1/28/2009 7:24 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2009 Report Share Posted January 29, 2009 I am very fragrance conscious and bothered by nearly all of them. This was true long before PF. Now, I cannot imagine having hair colored with this, so I do feel for all of you. When I was married, would warn me if she was coloring hers, close the doors to the bedroom and bathroom and I'd stay in another part of the house for a while. Actually, she'd normally try to do it when I wasn't around. One thing I would say is that if you do go into any place that a fragrance bothers you, then don't try to suffer through it. Leave. I had to skip out on an Opthalmologist exam last year and come back two months later. I knew the second I opened the door I couldn't do it because they were painting. I'm very allergic to oil paint. Just from opening the door, I immediately too two Benedryl. > > > > I just came from my hair appt which I had to cut short, because I had > > 2 bad coughing spells and I was embarrassing myself and I felt making > > customers uneasy. So I only got half my hair colored J_ I kept using > > the rescue inhaler and finally it hasstopped. I have never had > > trouble with the smells before, but I am also getting over ( hope) an > > upper respiratory infection (all in my head and upper airways). I > > have been using a nebulizer 3 times a day to try to get this stuff > > out, and I guess it picked of all times to come up. > > > > > > > > I just felt drained and I am now trying to keep from the tears and > > feeling sorry for myself. > > > > > > > > Thanks for listening. > > > > > > > > Sue D. > > > > 63 yr old, Fibrotic NSIP dx 9/07, VA > > > > > > > > > > ------------------------------------------------------------------------ > > > > > > No virus found in this incoming message. > > Checked by AVG - http://www.avg.com > > Version: 8.0.233 / Virus Database: 270.10.15/1922 - Release Date: 1/28/2009 7:24 PM > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2009 Report Share Posted January 29, 2009 Talking about coloring hair.. I am just SOOOOO mad. I have colored my WHITE twice this week and NOTHING.. so I am white and shall remain white. I hate it but whatch gonna do. I also NEED a hair cut but may not do that either.. I am just in a funky spot with this head. GGGGGGGRRRRRR. 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." Sue, Whenever I need my hair cut and colored ( about every 5-6 weeks) the hairdresser makes certain thatno perms or other procedures are being done when I'm there. It's a very small shop so there usually aren't too manyconflicts. If there is one I change the appointment.That stuff really bothers my breathing, as do any scented products, candles, cleaning products, perfumes, shampoos etc.The bath and body shops kill me!The only aromas that do not bother me are food!!! Some of my favorites are the smell of cooking garlic and onion, baking bread,citrus of any kind. Z 65, fibriotic NSIP/o5/PAAnd “mild” PH/10/07 and Reynaud’s too!!No, NSIP was not self-inflicted…I never smoked!Potter, reader,carousel lover and MomMom to Darahand Sara “I’m gonna be iron like a lion in Zion” Bob MarleyVinca Minor-periwinkle is my flower Sue Dassel wrote:I just came from my hair appt which I had to cut short, because I had 2 bad coughing spells and I was embarrassing myself and I felt making customers uneasy. So I only got half my hair colored J_ I kept using the rescue inhaler and finally it hasstopped. I have never had trouble with the smells before, but I am also getting over ( hope) an upper respiratory infection (all in my head and upper airways). I have been using a nebulizer 3 times a day to try to get this stuff out, and I guess it picked of all times to come up. I just felt drained and I am now trying to keep from the tears and feeling sorry for myself. Thanks for listening. Sue D.63 yr old, Fibrotic NSIP dx 9/07, VA No virus found in this incoming message. Checked by AVG - http://www.avg.com Version: 8.0.233 / Virus Database: 270.10.15/1922 - Release Date: 1/28/2009 7:24 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2009 Report Share Posted January 29, 2009 White is beautiful!! Long is natural, curly is wonderful, straight is great.....basically any day that you HAVE hair is a good day!! I can say this with a straight face, as I am apparently losing my hair to the meds I am taking!! So, swish your beautiful unruly hair for me....lol!! Your balding air friend, NSIP/UIP 08 > > > > > > I just came from my hair appt which I had to cut > short, because I had 2 bad coughing spells and I was > embarrassing myself and I felt making customers uneasy. So > I only got half my hair colored J_ I kept using the rescue > inhaler and finally it hasstopped. I have never had trouble > with the smells before, but I am also getting over ( hope) > an upper respiratory infection (all in my head and upper > airways). I have been using a nebulizer 3 times a day to > try to get this stuff out, and I guess it picked of all > times to come up. > > > > > > > > I just felt drained and I am now trying to keep from > the tears and feeling sorry for myself. > > > > > > > > Thanks for listening. > > > > > > > > Sue D. > > > > 63 yr old, Fibrotic NSIP dx 9/07, VA > > > > > > > > > > No virus found in this incoming message. > > Checked by AVG - http://www.avg.com > > Version: 8.0.233 / Virus Database: 270.10.15/1922 - > Release Date: 1/28/2009 7:24 PM > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2009 Report Share Posted January 30, 2009 Sue i can understand how the odors would bother you I find candle shops to be the worst re: odors some of the craft stores have their "smelly" stuff near the entrance, I have to hold my nose while I walk through it to get to the rest of the store I color my own hair, turn extra fans on to blow away the odors and keep doors open so the odors will dissipate (spelling?) teaching Jerry how to put the color on for when I am no longer able to do it myself he complains about the odors more than i do Pink Joyce IPF 3/06 Pennsylvania Donate Life Subject: Re: Cronic coughTo: Breathe-Support Date: Thursday, January 29, 2009, 6:08 PM I just came from my hair appt which I had to cut short, because I had 2 bad coughing spells and I was embarrassing myself and I felt making customers uneasy. So I only got half my hair colored J_ I kept using the rescue inhaler and finally it hasstopped. I have never had trouble with the smells before, but I am also getting over ( hope) an upper respiratory infection (all in my head and upper airways). I have been using a nebulizer 3 times a day to try to get this stuff out, and I guess it picked of all times to come up. I just felt drained and I am now trying to keep from the tears and feeling sorry for myself. Thanks for listening. Sue D. 63 yr old, Fibrotic NSIP dx 9/07, VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2009 Report Share Posted January 31, 2009 During a real hard coughing attack, has anyone experienced what feels like “pins and needles” in your chest. This happened to me yesterday—didn’t last long but it scared me? Sue D. 62 yr old, Fibrotic NSIP dx 9/07, VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2009 Report Share Posted January 31, 2009 During a real hard coughing attack, has anyone experienced what feels like “pins and needles” in your chest. This happened to me yesterday—didn’t last long but it scared me? Sue D. 62 yr old, Fibrotic NSIP dx 9/07, VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2009 Report Share Posted February 1, 2009 don't remember pins and needles, but it is very scary Pink Joyce IPF 3/06 Pennsylvania Donate Life Subject: Re: Cronic coughTo: Breathe-Support Date: Saturday, January 31, 2009, 12:37 PM During a real hard coughing attack, has anyone experienced what feels like “pins and needles” in your chest. This happened to me yesterday—didn’t last long but it scared me? Sue D. 62 yr old, Fibrotic NSIP dx 9/07, VA Quote Link to comment Share on other sites More sharing options...
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