Guest guest Posted January 27, 2009 Report Share Posted January 27, 2009 , Most of us have a chronic cough that doesn't go away, but when I started having burning in the back of my throat the doctor put me on prilosec for acid reflux and the burning went away, so did a lot of the coughing. Not sure if this could be your problem. R. (52) Sarcoid/PF 3/2006 Carlsbad, California Subject: Cronic coughTo: Breathe-Support Date: Tuesday, January 27, 2009, 8:11 AM 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2009 Report Share Posted January 27, 2009 , Most of us have a chronic cough that doesn't go away, but when I started having burning in the back of my throat the doctor put me on prilosec for acid reflux and the burning went away, so did a lot of the coughing. Not sure if this could be your problem. R. (52) Sarcoid/PF 3/2006 Carlsbad, California Subject: Cronic coughTo: Breathe-Support Date: Tuesday, January 27, 2009, 8:11 AM 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2009 Report Share Posted January 27, 2009 , Most of us have a chronic cough that doesn't go away, but when I started having burning in the back of my throat the doctor put me on prilosec for acid reflux and the burning went away, so did a lot of the coughing. Not sure if this could be your problem. R. (52) Sarcoid/PF 3/2006 Carlsbad, California Subject: Cronic coughTo: Breathe-Support Date: Tuesday, January 27, 2009, 8:11 AM 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2009 Report Share Posted January 27, 2009 If you have IPF, I would be extremely surprised if your needs were the same at rest and under exertion. Do you have an oximeter to monitor your saturation? If not, please get one. > > 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. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2009 Report Share Posted January 27, 2009 ...thanks for your help. I got another response that I might need to try Prilosec, Nexium or Previcid. I'll talk to my doctor next week. Thanks again. > > From: johnj6992 > Subject: Cronic cough > To: Breathe-Support > Date: Tuesday, January 27, 2009, 8:11 AM > > > > > > > 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. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2009 Report Share Posted January 27, 2009 Thanks for your help. I'll talk with my doctor next week. > > > > 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 27, 2009 Report Share Posted January 27, 2009 Thanks Bruce, I don't understand why my pulmonologist never suggested that I get one. I'm seeing a new doctor on March 13th. I'll ask him about it. Thanks again, > > > > 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. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2009 Report Share Posted January 27, 2009 If he opposes getting one, then get another new pulmonologist. There is no way they can no your saturation under all conditions from their offices. > > > > > > 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. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2009 Report Share Posted January 27, 2009 Hi , I have just gone through the cough until I couldn't stand myself. What has worked for me is takingTessalon Pearls 100 mg. and using the netti pot. Plus prilosec for GERDS. And that has helped so much. Another thing is when my saturation is low at times I need to put my 02 on my face. I sit with it off of a period of time but can tell when it's time to breathe some life into me... Take care of you and know we are here for you. 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." Thanks Bruce,I don't understand why my pulmonologist never suggested that I get one. I'm seeing a new doctor on March 13th. I'll ask him about it.Thanks again, > >> > 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.> >> > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2009 Report Share Posted January 27, 2009 , Some pulmadudes don't think we're smart enough to know what low saturation is.. lolYour best to talk to him about one then go ahead and get one. Once they see we can monitor ourselves they begin to ask at what activity we were dropping at etc.... So yeah I would get one. When you start feeling your legs burning or headaches come on quickly that is a good time to have an oximeter. you'll soon find out how much 02 your body is needing. But yes by all means talk to your Dr.Best of all things to you. 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." Thanks Bruce,I don't understand why my pulmonologist never suggested that I get one. I'm seeing a new doctor on March 13th. I'll ask him about it.Thanks again, > >> > 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.> >> > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2009 Report Share Posted January 27, 2009 Hi , Gotta love the cough....NOT. I also have the chronic cough. I concur with the board about GERD. I was just recently diagnosed and now take Gaviscon as well as a protomic (don't know the name nor how to spell it) I have noticed a bit of a difference on the cough and the burning sensation has definitely improved. One of these days I'm going to put a file on our home page on different thoughts and suggestions on how to help the cough. I know for me it is one of my most annoying symptoms. Of course, the SOB is no picnic either! Hope everyone is having as good of a day as they can be. Love and prayers. Leanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2009 Report Share Posted January 27, 2009 Peggy, I don't mean to be ignorant, but what is a netti pot? Thanks, > > > > > > 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. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2009 Report Share Posted January 27, 2009 Peggy, I don't mean to be ignorant, but what is a netti pot? Thanks, > > > > > > 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. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2009 Report Share Posted January 27, 2009 Peggy, I don't mean to be ignorant, but what is a netti pot? Thanks, > > > > > > 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. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2009 Report Share Posted January 27, 2009 Patty, not long, maybe an hour. I don't know what size your tank is. There should be a chart somewhere in the information that came with it. I have the Helios Marathon 850. I use it at 6lpm to exercise. I really suck it in because I was used to 10lpm at rehab. Also, it evaporates pretty fast even if you fill the tank and keep it closed, not using it. I have an inverter in my car that I use for longer trips. I had filled my tank and saved it for walking around at a picnic only to find it had already evaporated. I have a 50ft line for the one in the car but the car must be running or it runs down the car battery pretty fast. I can go about three hours on mine set at three for shopping or two for just sitting in the car. I also plan not to go out for more than three hours round trip, otherwise my big muscles go and I become incontinent...a real incentive for planning well! ) I thought it was just me but my doc said it was low oxygen and I was used to pushing myself and with out an oximiter, I know I can get really low. I dropped to 73 on the six minute walk last week and wasn't yet that low... If you can't find your paper work, maybe you can look it up on line. Good luck, I know you will enjoy little breaks of feeling more free. Margaret To: Breathe-Support Sent: Tuesday, January 27, 2009 3:20:40 PMSubject: 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 27, 2009 Report Share Posted January 27, 2009 Patti On 6 Continuous a Helios Marathon will last about an hour and 45 minutes. If you require 6 Continuous, then it's not the appropriate product for you. Made by the same manufacturer the Companion 1000 T will last an hour longer (approximately 2 hours and 45 minutes). Most people at 6 lpm would require at least two of those. > > > > > > 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 27, 2009 Report Share Posted January 27, 2009 Patti, Hello..I haven't seen many posts from you recently. I don't have the Marathon and I don't use 6 lpm at all. I use 3-3.5 pulse.( I get 4-4.5 hours) My smaller Helios goes to 4 lpm only pulse. I am looking into getting the larger one so that I'll have more hours with one fill-up. The liquid O2 dissipates from the tank about 1 lb in 24 hours...so a fill-up of my smaller unit is gone without use in 24 hours! I have no idea how long the Marathon would last at all. I think Bruce may have done some research... Yo..Bruce help Patti out here. 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 friend.patti wrote: Z hi, 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 > > > > > 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 27, 2009 Report Share Posted January 27, 2009 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 27, 2009 Report Share Posted January 27, 2009 thanks Bruce appreciate the info..patti > > > > > > > > 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 27, 2009 Report Share Posted January 27, 2009 Hi thanks for more info.. been a rough time with the weather change; finding it more difficult to keep running.. Being it is so difficult to tell when my body has an infection brewing my doc wasn't sure at this point if just an infection or exacerbation of PF.. OR both.. He told me to start the antibiotics he gave me if the tell tale signs of infection showed up..So started them on Saturday. So we shall see.. I was so happy about the snow till i tried to brush off the small amount we got yesterday morning.. and I want 10 inches.. Eeks.. 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 http://www.avg.com> > > > > Version: 8.0.176 / Virus Database: 270.10.13/1916 - Release > > Date: 1/26/2009 7:08 AM > > > > > > > > > > > > > > > > > ----------------------------------------------------------------- ------- > > > > > > 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 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 To: Breathe-Support Sent: 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 28, 2009 Report Share Posted January 28, 2009 Margaret I doubt seriously that her doctor specified which of the portables, but rather did specify flow. The oxygen companies do often provide inappropriate equipment. For the record, doctors offices are often rather uninformed too. I realize you've only been here a short while but people are provided equipment that isn't best for them all the time and even told certain equipment doesn't exist sometimes. Doctors offices are not equipment knowledgeable sometimes and oxygen delivery people often deliver what they are use to or have handy or the least that will possibly work. They deliver Helios Plus all the time to people who really need Marathons. They deliver concentrators that only go to 6 lpm when and act like there is no higher because thats all they happen to have at that moment. They are use to COPD patients far more than PF patients. Marathon is prescribed typically for those who are on flows no greater than 4 lpm most of the time as it has demand to 4 lpm and continuous to 6 lpm. At 6 lpm, in addition to its short life it's inclined to freeze and it's rather uncomfortable blowing it's maximum. It also provides no room for more if required. The Companion 1000T or the Caire Stroller High Flow are designed for patients requiring more flow. They are continuous only and go up to 15 lpm. So, I stand by my statement of the appropriate equipment for someone who constantly requires 6 lpm. Jane uses a respironics evergo and others may. Its a very good piece of equipment if you can fit within its limitations. It is pulse only and goes up to 6 lpm. So it can not be used for sleep or for anyone who can only function on continuous. It works off AC and DC and at 2 lpm will last nearly 8 hours on two fully charged batteries. Or 4 lpm for 4 hours. If one needs continuous for sleep, the only portable that provides that is the Sequal Eclipse. It is heavier than the Evergo although any of them are pretty much going to require a cart. It has continuous of up to 3 lpm to go with pulse of 6 lpm. As to the costs for monthly concentrator rentals you are correct that they providers are charging quite a bit for little service on normally rather old and inexpensive concentrators. I think most people believe they are more expensive than they are. I have a personal Respironics Everflo that I own just for places like my cousins house with miles of steps where getting my reservoir inside is difficult. I paid around $700 for it new. Reconditioned units are available for half of that. There are units under $600 new. However, the cost to the oxygen companies is tanks and deliveries. For my reservoir and my liquid portable as well as providing travel reservoirs when needed (although I also own own a small one of my own they fill for me) the rate they charge medicare is quite reasonable. Knowing in case of problems I have 24/7 service is quite a comfort 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 Patti I have the Marathon Yes, it needs to be filled daily, sometimes more than once, depending on how it is used i use it on demand 4 most of the time at rehab, i use continuous 4 when sitting in the car or a waiting room, i use demand 2.5 when I start talking, i need to increase it to D4 walking in supermarket, D 4 walking the dog, D4 to C4 on demand, it lasts a long time on continuous, it lasts a much shorter time timed it when i first got it, but don't remember it takes about 2-3 minutes to fill it I do have a list of times, just found the list, it can be found on the web site and printed out continuous flow C6 1.5 hours C5 2.0 hours C4 2.5 hours C3 3.5 hours C2 5.5 hours C1 10.5 hours I vary the lpm's while using it, so the times vary for me, depends on activity level demand flow D4 9.5 hours D3 11.5 hours D2.5 16.0 hours D2 18.5 hours D1.5 22.5 hours sometimes, it i will be out of the house for a long period of time, i take the helios for the drive, and use the marathon when out of the car hope this helps call me if you have any more questions Pink Joyce IPF 3/06 Pennsylvania Donate Life Subject: Cronic coughTo: Breathe-Support Date: Tuesday, January 27, 2009, 7:20 PM 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 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 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...
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