Guest guest Posted May 19, 2000 Report Share Posted May 19, 2000 Hi Lamar, I am aware of Oxygen being used for other 'diseases'. Now I have seen oxygen capsules in my health food store. Go figure. While I am aware nerves can and do regenerate, I think they do that on their own. Have you considered asking your Dr. about this? Nothing helps my CMT more than rest and plenty of fresh air and being surrounded by plants/foilage. There isn't a cure for CMT, as you know. Have you considered looking in the Sennoff book to see if there is an entry under the 'alternatives' section. When I am a bit more settled, will look it up for you and post if I find anything. Gretchen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2009 Report Share Posted March 5, 2009 Yes, margarette, I have a oximeter and should be using it. I will test my oxygen more frequently when I am out. I just was on the phone with a friend and walked from thelivinng room tothekitchen withoutoxygen and she said "You aren't using oxygen, are you?" "no" I said. "Well you sound worse the before you started using oxygen." So maybe I am just confused. I leave on the 22nd for National Jewish. I amm looking forward to seeinng them. I have a friend who has PF but her's is caused by rheumatoid arthritis and her pulmo said as long as her arthritis is under control her fibrosis is under control. she is not on oxygen and he doesn't see her on a regular basis so she keeps comparing herself to me and can't understand why I think I have a death sentence. I don't know how to explain. Joyce rudy AZ Oxygen I am beginnning to think I don';t have IPF. Because my new oxygen supplier only has portables for liquid oxygen that hold 2-3 hours of oxygen I have been without oxygen for the last couple of days when out and I feel just fine. I am beginning to thik that being on oxygen these last few months has healed my lungs and now they are ok....but as far as I know I haven't been breathless but then Ihaven't noticed my breathing. so maybe luck is with me and I don't have IPF!Joyce AZ IPF 11-08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2009 Report Share Posted March 5, 2009 Joyce, It is confusing but remember there are over 200 different types of pulmonary fibrosis so you can't really compare yourself to someone who has fibrosis that is related to her arthritis. We're all different, require different treatments, medications and have different prognosis and outcome. The goal is to find out what you need and then get it. And not acceptable is exactly the phrase I would use to describe your oxygen situation. You need to tell your supplier that you are out and away from your home for 6-8 hours at a time and you need an oxygen source that will keep you safe and supplied all day. Insist Joyce, speak to the manager of the office not just the customer service rep on the phone. And please, please, please use your oximeter. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Thursday, March 5, 2009 9:42:41 PMSubject: Re: Oxygen Yes, margarette, I have a oximeter and should be using it. I will test my oxygen more frequently when I am out. I just was on the phone with a friend and walked from thelivinng room tothekitchen withoutoxygen and she said "You aren't using oxygen, are you?" "no" I said. "Well you sound worse the before you started using oxygen." So maybe I am just confused. I leave on the 22nd for National Jewish. I amm looking forward to seeinng them. I have a friend who has PF but her's is caused by rheumatoid arthritis and her pulmo said as long as her arthritis is under control her fibrosis is under control. she is not on oxygen and he doesn't see her on a regular basis so she keeps comparing herself to me and can't understand why I think I have a death sentence. I don't know how to explain. Joyce rudy AZ Oxygen I am beginnning to think I don';t have IPF. Because my new oxygen supplier only has portables for liquid oxygen that hold 2-3 hours of oxygen I have been without oxygen for the last couple of days when out and I feel just fine. I am beginning to thik that being on oxygen these last few months has healed my lungs and now they are ok....but as far as I know I haven't been breathless but then Ihaven't noticed my breathing. so maybe luck is with me and I don't have IPF!Joyce AZ IPF 11-08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2009 Report Share Posted March 5, 2009 Joyce, It's always something isn't it... My tank lasts 3 maybe 4 hours. I try to be as organized as possible planning my order of stops, having lists ready, having my mail addressed and stamped ready to drop in the box, anything that can be done beforehand at home done so that I can use my time as efficiently as possible to get my necessary business done. If I know I am going to run out before getting home, I save it for when I am out of the car running around because we do need less oxygen when sitting to drive. I seldom eat out if I have anything else that I must do because I want to be relaxed and enjoy my meal. My most stressful time when I need the most oxygen is getting in and out of the car. If I am pinched for time I wait until I am settled in the car and my blood ox is up, I put the tank on the seat beside me, turn it off until I am where I am going then turn it back on for getting out of the car. You are the only you there is so we all want you to take the best of care of yourself.. Margaret 62 Anchorage, Alaska Pneumonitis 97, PH 06, COPD, PF, respiratory & heart failure 08 I enjoy traveling, photography, gardening, sewing, home decorating, playing with my toys & classical music aka Grammie Goose To: Breathe-Support Sent: Thursday, March 5, 2009 5:34:24 PMSubject: Re: Oxygen Beth-I am not using oxygen when out because the company I changed to to get oxygen for my trip only has a tank for liquid oxyghen that lasts 2 hours...3 if I use it at a lower setting. Since I am gone for 6-8 hours when I am out I don't use any oxygen. It's not enough time. It takes me 30 min each way to get to town and that leaves me only 1 hour to do my errands and other things. Not acceptable. So I am without oxygen. Joyce AZ Oxygen I am beginnning to think I don';t have IPF. Because my new oxygen supplier only has portables for liquid oxygen that hold 2-3 hours of oxygen I have been without oxygen for the last couple of days when out and I feel just fine. I am beginning to thik that being on oxygen these last few months has healed my lungs and now they are ok....but as far as I know I haven't been breathless but then Ihaven't noticed my breathing. so maybe luck is with me and I don't have IPF!Joyce AZ IPF 11-08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2009 Report Share Posted March 6, 2009 rudy joyce while driving, you might be able to sit without o2, but as soon as you become active, you need to use it while doing the errands, expecially while exerting yourself take it with you and use it until it runs out ask yourself--why are you trying to damage your body? not sure if i said that right Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 www.transplantfund.org--- Subject: Re: OxygenTo: Breathe-Support Date: Thursday, March 5, 2009, 9:34 PM Beth-I am not using oxygen when out because the company I changed to to get oxygen for my trip only has a tank for liquid oxyghen that lasts 2 hours...3 if I use it at a lower setting. Since I am gone for 6-8 hours when I am out I don't use any oxygen. It's not enough time. It takes me 30 min each way to get to town and that leaves me only 1 hour to do my errands and other things. Not acceptable. So I am without oxygen. Joyce AZ Oxygen I am beginnning to think I don';t have IPF. Because my new oxygen supplier only has portables for liquid oxygen that hold 2-3 hours of oxygen I have been without oxygen for the last couple of days when out and I feel just fine. I am beginning to thik that being on oxygen these last few months has healed my lungs and now they are ok....but as far as I know I haven't been breathless but then Ihaven't noticed my breathing. so maybe luck is with me and I don't have IPF!Joyce AZ IPF 11-08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2009 Report Share Posted March 6, 2009 rudy joyce someone else on this board once said "De Nile is not a river in Egypt" Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 www.transplantfund.org--- Subject: Re: OxygenTo: Breathe-Support Date: Thursday, March 5, 2009, 9:34 PM Beth-I am not using oxygen when out because the company I changed to to get oxygen for my trip only has a tank for liquid oxyghen that lasts 2 hours...3 if I use it at a lower setting. Since I am gone for 6-8 hours when I am out I don't use any oxygen. It's not enough time. It takes me 30 min each way to get to town and that leaves me only 1 hour to do my errands and other things. Not acceptable. So I am without oxygen. Joyce AZ Oxygen I am beginnning to think I don';t have IPF. Because my new oxygen supplier only has portables for liquid oxygen that hold 2-3 hours of oxygen I have been without oxygen for the last couple of days when out and I feel just fine. I am beginning to thik that being on oxygen these last few months has healed my lungs and now they are ok....but as far as I know I haven't been breathless but then Ihaven't noticed my breathing. so maybe luck is with me and I don't have IPF!Joyce AZ IPF 11-08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2009 Report Share Posted March 6, 2009 Rudy.... I'm confused. You were Rxd O2 or you would not have it. You take yourself off O2 and seem to think you no longer have PF. I don't read that you have discussed this w/ ANY dr. You are not using O2 because the provider doesn't meet your needs (FOR O2!). So you are choosing to go without O2 rather than change the things you can to meet your O2 needs? You say not enough O2 is 'not acceptable' at yet you go without any. Rudy, you need a jolt here. Your thinking is not quite clear...it's called DENIAL. Since you joined the group you have had a "yes but" attitude when others have tried to be helpful. It was easy to see you were overwhelmed with many things.... Each one of us here has had/have our own denial but when you start doing yourself harm by not taking care of yourself I personally need to say hey girl, whatcha doin'? Remember, not using O2 in the amounts you are Rx deprives your other organs of O2 as well. Please, do what you need to do to get back on your O2...if the provider doesn't "provide" then let your dr know! I know how hard it is to keep on going when we are tired or confused and sometimes we just don't want to have to do a particular thing. I've been there done that. We care about each other here Rudy and I care about you and the harm you seem to be doing to yourself by your choices. I have not meant to be offensive and if I've offended you you need not reply. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Oxygen I am beginnning to think I don';t have IPF. Because my new oxygen supplier only has portables for liquid oxygen that hold 2-3 hours of oxygen I have been without oxygen for the last couple of days when out and I feel just fine. I am beginning to thik that being on oxygen these last few months has healed my lungs and now they are ok....but as far as I know I haven't been breathless but then Ihaven't noticed my breathing. so maybe luck is with me and I don't have IPF!Joyce AZ IPF 11-08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2009 Report Share Posted March 6, 2009 No, you haven't offended me. I am just having a hard time beliving that I have IPF! I believe I must have faked the pulmonary tests or something. In fact I am sure when I go to National Jewish they will tell me that I have been misdiagnosed! That is what is in the front of my mind. I can't believe it. As to the oxygen while out, I can use it for 2 hours and then the rest of the day Iwill be without because I have so many things to do.I will not stop doing the things that I do! I will not treat myself like an invalid! I jus can't believe that I have a serious life threatening disease! And, no I have not discussed this with mydoctor. I see my primary doc on Monday and will tell her then. She will not like it. But, at least until I get back from Colorado there is nothing I can do about it. I need oxygen for my journey and this provider is the only provider that will give it to me but the trade off is they have very small portable tanks. Joyce Rudy AZ 11-08 IPF Oxygen I am beginnning to think I don';t have IPF. Because my new oxygen supplier only has portables for liquid oxygen that hold 2-3 hours of oxygen I have been without oxygen for the last couple of days when out and I feel just fine. I am beginning to thik that being on oxygen these last few months has healed my lungs and now they are ok....but as far as I know I haven't been breathless but then Ihaven't noticed my breathing. so maybe luck is with me and I don't have IPF!Joyce AZ IPF 11-08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2009 Report Share Posted March 6, 2009 Pink that is a good idea. Never thought of it. I could set it aside while driving and use it when walking around. That might extend the use for several hours! Thanks. Joyce Rudy, AZ IPF 11-08 Oxygen I am beginnning to think I don';t have IPF. Because my new oxygen supplier only has portables for liquid oxygen that hold 2-3 hours of oxygen I have been without oxygen for the last couple of days when out and I feel just fine. I am beginning to thik that being on oxygen these last few months has healed my lungs and now they are ok....but as far as I know I haven't been breathless but then Ihaven't noticed my breathing. so maybe luck is with me and I don't have IPF!Joyce AZ IPF 11-08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2009 Report Share Posted March 6, 2009 Pink that is a good idea. Never thought of it. I could set it aside while driving and use it when walking around. That might extend the use for several hours! Thanks. Joyce Rudy, AZ IPF 11-08 Oxygen I am beginnning to think I don';t have IPF. Because my new oxygen supplier only has portables for liquid oxygen that hold 2-3 hours of oxygen I have been without oxygen for the last couple of days when out and I feel just fine. I am beginning to thik that being on oxygen these last few months has healed my lungs and now they are ok....but as far as I know I haven't been breathless but then Ihaven't noticed my breathing. so maybe luck is with me and I don't have IPF!Joyce AZ IPF 11-08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2009 Report Share Posted March 6, 2009 Yes, Margaret, I will do that. As long as I am sitting my oxygen is in the 90's, Joyce Rudy Oxygen I am beginnning to think I don';t have IPF. Because my new oxygen supplier only has portables for liquid oxygen that hold 2-3 hours of oxygen I have been without oxygen for the last couple of days when out and I feel just fine. I am beginning to thik that being on oxygen these last few months has healed my lungs and now they are ok....but as far as I know I haven't been breathless but then Ihaven't noticed my breathing. so maybe luck is with me and I don't have IPF!Joyce AZ IPF 11-08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2009 Report Share Posted March 6, 2009 I hear you Beth, I have talked to the office manager and he is trying to get a Helios. Until I get back from Jewish I am unable to change providers because only this provider will loan me a airceptor for thetrip. Joyce Rudy, AZ IPF 11-08 Oxygen I am beginnning to think I don';t have IPF. Because my new oxygen supplier only has portables for liquid oxygen that hold 2-3 hours of oxygen I have been without oxygen for the last couple of days when out and I feel just fine. I am beginning to thik that being on oxygen these last few months has healed my lungs and now they are ok....but as far as I know I haven't been breathless but then Ihaven't noticed my breathing. so maybe luck is with me and I don't have IPF!Joyce AZ IPF 11-08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2009 Report Share Posted March 6, 2009 I hear you Beth, I have talked to the office manager and he is trying to get a Helios. Until I get back from Jewish I am unable to change providers because only this provider will loan me a airceptor for thetrip. Joyce Rudy, AZ IPF 11-08 Oxygen I am beginnning to think I don';t have IPF. Because my new oxygen supplier only has portables for liquid oxygen that hold 2-3 hours of oxygen I have been without oxygen for the last couple of days when out and I feel just fine. I am beginning to thik that being on oxygen these last few months has healed my lungs and now they are ok....but as far as I know I haven't been breathless but then Ihaven't noticed my breathing. so maybe luck is with me and I don't have IPF!Joyce AZ IPF 11-08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2009 Report Share Posted March 7, 2009 Sher i felt like "yelling" at her a couple of times with her "yes but" attitude. thank you for giving me a name for it Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 www.transplantfund.org--- Subject: Re: OxygenTo: Breathe-Support Date: Friday, March 6, 2009, 11:17 AM Rudy.... I'm confused. You were Rxd O2 or you would not have it. You take yourself off O2 and seem to think you no longer have PF. I don't read that you have discussed this w/ ANY dr. You are not using O2 because the provider doesn't meet your needs (FOR O2!). So you are choosing to go without O2 rather than change the things you can to meet your O2 needs? You say not enough O2 is 'not acceptable' at yet you go without any. Rudy, you need a jolt here. Your thinking is not quite clear...it's called DENIAL. Since you joined the group you have had a "yes but" attitude when others have tried to be helpful. It was easy to see you were overwhelmed with many things.... Each one of us here has had/have our own denial but when you start doing yourself harm by not taking care of yourself I personally need to say hey girl, whatcha doin'? Remember, not using O2 in the amounts you are Rx deprives your other organs of O2 as well. Please, do what you need to do to get back on your O2...if the provider doesn't "provide" then let your dr know! I know how hard it is to keep on going when we are tired or confused and sometimes we just don't want to have to do a particular thing. I've been there done that. We care about each other here Rudy and I care about you and the harm you seem to be doing to yourself by your choices. I have not meant to be offensive and if I've offended you you need not reply. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Oxygen I am beginnning to think I don';t have IPF. Because my new oxygen supplier only has portables for liquid oxygen that hold 2-3 hours of oxygen I have been without oxygen for the last couple of days when out and I feel just fine. I am beginning to thik that being on oxygen these last few months has healed my lungs and now they are ok....but as far as I know I haven't been breathless but then Ihaven't noticed my breathing. so maybe luck is with me and I don't have IPF!Joyce AZ IPF 11-08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2009 Report Share Posted March 7, 2009 Rudy...thanks for your reply. I know 'denial' is not something you choose to have, it's a mind set you cannot/will not change. (Denial is not seeing the facts the way they really are). Rudy, you're an adult and entitled to make your own choices...and choices have consequences. My grandmother used to say, "A man convinced against his will remains of the same opinion still". I will pray for you that you will be able to get by on will power alone w/o a serious consequence. You have made it clear that you will 'not stop doing the things you do' and it's inappropriate now for me to continue to urge you to do differently. There are over 600 members on this board Rudy...each one of us has felt denial. None of us wanted to accept PF or change our lives to accommodate living with it. It sounds like you are coming close to choosing to die with it instead. I can't think of a person on this board who treats themselves like an invalid...even our precious Lou has an attitude that is unbelievable and she is fighting for her life right now, on meds, morphine, 25L of O2, hospice, wheelchair and , her nurse. God Bless you. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Oxygen I am beginnning to think I don';t have IPF. Because my new oxygen supplier only has portables for liquid oxygen that hold 2-3 hours of oxygen I have been without oxygen for the last couple of days when out and I feel just fine. I am beginning to thik that being on oxygen these last few months has healed my lungs and now they are ok....but as far as I know I haven't been breathless but then Ihaven't noticed my breathing. so maybe luck is with me and I don't have IPF!Joyce AZ IPF 11-08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2009 Report Share Posted March 7, 2009 Rudy...thanks for your reply. I know 'denial' is not something you choose to have, it's a mind set you cannot/will not change. (Denial is not seeing the facts the way they really are). Rudy, you're an adult and entitled to make your own choices...and choices have consequences. My grandmother used to say, "A man convinced against his will remains of the same opinion still". I will pray for you that you will be able to get by on will power alone w/o a serious consequence. You have made it clear that you will 'not stop doing the things you do' and it's inappropriate now for me to continue to urge you to do differently. There are over 600 members on this board Rudy...each one of us has felt denial. None of us wanted to accept PF or change our lives to accommodate living with it. It sounds like you are coming close to choosing to die with it instead. I can't think of a person on this board who treats themselves like an invalid...even our precious Lou has an attitude that is unbelievable and she is fighting for her life right now, on meds, morphine, 25L of O2, hospice, wheelchair and , her nurse. God Bless you. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Oxygen I am beginnning to think I don';t have IPF. Because my new oxygen supplier only has portables for liquid oxygen that hold 2-3 hours of oxygen I have been without oxygen for the last couple of days when out and I feel just fine. I am beginning to thik that being on oxygen these last few months has healed my lungs and now they are ok....but as far as I know I haven't been breathless but then Ihaven't noticed my breathing. so maybe luck is with me and I don't have IPF!Joyce AZ IPF 11-08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2009 Report Share Posted March 7, 2009 Pink...I turn my O2 off when I'm driving or sitting and then use it when I'm out of the car. works good for me. At least for now. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Oxygen I am beginnning to think I don';t have IPF. Because my new oxygen supplier only has portables for liquid oxygen that hold 2-3 hours of oxygen I have been without oxygen for the last couple of days when out and I feel just fine. I am beginning to thik that being on oxygen these last few months has healed my lungs and now they are ok....but as far as I know I haven't been breathless but then Ihaven't noticed my breathing. so maybe luck is with me and I don't have IPF!Joyce AZ IPF 11-08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2009 Report Share Posted March 7, 2009 Pink...I turn my O2 off when I'm driving or sitting and then use it when I'm out of the car. works good for me. At least for now. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Oxygen I am beginnning to think I don';t have IPF. Because my new oxygen supplier only has portables for liquid oxygen that hold 2-3 hours of oxygen I have been without oxygen for the last couple of days when out and I feel just fine. I am beginning to thik that being on oxygen these last few months has healed my lungs and now they are ok....but as far as I know I haven't been breathless but then Ihaven't noticed my breathing. so maybe luck is with me and I don't have IPF!Joyce AZ IPF 11-08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2009 Report Share Posted March 7, 2009 First, any oxygen provider can get larger portables. The same manufacturer makes all sizes. Now, to the serious stuff. If you choose to ignore advice and ignore when you need oxygen and take care of yourself that is your choice. It is one that will lead to premature death too. I intend to live as long as possible and die only when the PF takes me. Not treating the disease with the proper respect is what leads to PH and heart failure or pneumonia and hospitalization. If you don't choose to believe you have the disease and don't choose to listen to advice and don't plan to change things you do, then thats your choice. That said I see no way I can provide you with any form of meaningful support so will respect your choices and no longer make suggestions otherwise. I do hope your attitude is different toward your trip to Jewish and you intend to listen to them. Meanwhile I'm going to continue to respect my disease and enjoy my life to the best of my ability. And, I intend to live until my lungs just have nothing left. I intend when the time comes to follow in the footsteps of those like Vicky and Lou finding continued comfort and value in each day with the help of hospice and morphine. > > Rudy...thanks for your reply. > I know 'denial' is not something you choose to have, it's a mind set you cannot/will not change. (Denial is not seeing the facts the way they really are). > Rudy, you're an adult and entitled to make your own choices...and choices have consequences. > My grandmother used to say, " A man convinced against his will remains of the same opinion still " . > I will pray for you that you will be able to get by on will power alone w/o a serious consequence. > You have made it clear that you will 'not stop doing the things you do' and it's inappropriate now for me to continue to urge you to do differently. > There are over 600 members on this board Rudy...each one of us has felt denial. None of us wanted to accept PF or change our lives to accommodate living with it. > It sounds like you are coming close to choosing to die with it instead. > I can't think of a person on this board who treats themselves like an invalid...even our precious Lou has an attitude that is unbelievable and she is fighting for her life right now, on meds, morphine, 25L of O2, hospice, wheelchair and , her nurse. > God Bless you. > > MamaSher; 70, IPF 3-06, OR. > Nasturtiums > Don't fret about tomorrow, God is already there! > > Oxygen > > > I am beginnning to think I don';t have IPF. Because my new oxygen supplier only has portables for liquid oxygen that hold 2-3 hours of oxygen I have been without oxygen for the last couple of days when out and I feel just fine. I am beginning to thik that being on oxygen these last few months has healed my lungs and now they are ok....but as far as I know I haven't been breathless but then Ihaven't noticed my breathing. so maybe luck is with me and I don't have IPF! > > Joyce AZ IPF 11-08 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2009 Report Share Posted March 7, 2009 Sher When I sit in the car I look at my oximeter. As it raises I turn the oxygen down. If my drive is short I may only get it down to 2 lpm or 1 lpm. If my ride is long, I'll typically be able to turn it off. If I'm out and about for 4 hours or so during the day, my oxygen will therefore be from 0 to 4 lpm at various times. Depending on the nature of that day I might average under 2 lpm or over 3 lpm so a single fill of my Marathon might last 3 to 6 hours. My stroller would last nearly double that if I used it. But many days if I'm active and using the Marathon I will refill it from the backseat of the van at least once if not twice during the day. > > From: JOYCE RUDY greycharlie@... > Subject: Re: Oxygen > To: Breathe-Support > Date: Thursday, March 5, 2009, 9:34 PM > > > Beth-I am not using oxygen when out because the company I changed to to get oxygen for my trip only has a tank for liquid oxyghen that lasts 2 hours...3 if I use it at a lower setting. Since I am gone for 6-8 hours when I am out I don't use any oxygen. It's not enough time. It takes me 30 min each way to get to town and that leaves me only 1 hour to do my errands and other things. Not acceptable. So I am without oxygen. Joyce AZ > Oxygen > > > I am beginnning to think I don';t have IPF. Because my new oxygen supplier only has portables for liquid oxygen that hold 2-3 hours of oxygen I have been without oxygen for the last couple of days when out and I feel just fine. I am beginning to thik that being on oxygen these last few months has healed my lungs and now they are ok....but as far as I know I haven't been breathless but then Ihaven't noticed my breathing. so maybe luck is with me and I don't have IPF! > > Joyce AZ IPF 11-08 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2009 Report Share Posted March 7, 2009 Sher, Thank you for making these comments, I appreciate your straightforward approach at times like this especially. Joyce, I hope that things go well for you and you don't do yourself harm by going without oxygen. There is not any way you can convince me that your O2 supplier is not capable of getting you a liquid portable that would enable you to use oxygen throughout your busy day. This reminds me of when you stated it was impossible to get a portable concentrator for your trip. Then you did the research and realized it was possible. This supplier can get you what you need if they know what those needs are. I will close by telling you I am very put off by your comment equating using your oxygen the way it's prescribed with being "an invalid". On an average weekday I am out of the house for 4-6 hours a day. I work a part time job 3 days a week, I use the treadmill 5 days a week and take yoga classes twice a week. When I'm out and about I'm typically on 4-6 liters of oxygen and much more than that when I'm on the treadmill. I don't stop using my oxygen at any point during the day (unless I turn it off sometimes when I'm just sitting and driving) Does that sound as though I'm an "invalid". None of us are invalids, we all fight to be able to do every single thing we are capable of. I wish you well and I hope that you gain alot of information when you go to Jewish in Denver. Listen to what they tell you, take notes and ask questions. Hopefully you will gradually come to terms with what is happening. Good luck. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Saturday, March 7, 2009 11:46:02 AMSubject: Re: Oxygen Rudy...thanks for your reply. I know 'denial' is not something you choose to have, it's a mind set you cannot/will not change. (Denial is not seeing the facts the way they really are). Rudy, you're an adult and entitled to make your own choices...and choices have consequences. My grandmother used to say, "A man convinced against his will remains of the same opinion still". I will pray for you that you will be able to get by on will power alone w/o a serious consequence. You have made it clear that you will 'not stop doing the things you do' and it's inappropriate now for me to continue to urge you to do differently. There are over 600 members on this board Rudy...each one of us has felt denial. None of us wanted to accept PF or change our lives to accommodate living with it. It sounds like you are coming close to choosing to die with it instead. I can't think of a person on this board who treats themselves like an invalid...even our precious Lou has an attitude that is unbelievable and she is fighting for her life right now, on meds, morphine, 25L of O2, hospice, wheelchair and , her nurse. God Bless you. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Oxygen I am beginnning to think I don';t have IPF. Because my new oxygen supplier only has portables for liquid oxygen that hold 2-3 hours of oxygen I have been without oxygen for the last couple of days when out and I feel just fine. I am beginning to thik that being on oxygen these last few months has healed my lungs and now they are ok....but as far as I know I haven't been breathless but then Ihaven't noticed my breathing. so maybe luck is with me and I don't have IPF!Joyce AZ IPF 11-08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2009 Report Share Posted March 7, 2009 Bruce... it's just good knowing you have O2 to meet your needs. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Oxygen>>> I am beginnning to think I don';t have IPF. Because my new oxygensupplier only has portables for liquid oxygen that hold 2-3 hours ofoxygen I have been without oxygen for the last couple of days when outand I feel just fine. I am beginning to thik that being on oxygen theselast few months has healed my lungs and now they are ok....but as far asI know I haven't been breathless but then Ihaven't noticed my breathing.so maybe luck is with me and I don't have IPF!>> Joyce AZ IPF 11-08> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2009 Report Share Posted March 7, 2009 Bruce... it's just good knowing you have O2 to meet your needs. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Oxygen>>> I am beginnning to think I don';t have IPF. Because my new oxygensupplier only has portables for liquid oxygen that hold 2-3 hours ofoxygen I have been without oxygen for the last couple of days when outand I feel just fine. I am beginning to thik that being on oxygen theselast few months has healed my lungs and now they are ok....but as far asI know I haven't been breathless but then Ihaven't noticed my breathing.so maybe luck is with me and I don't have IPF!>> Joyce AZ IPF 11-08> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2009 Report Share Posted March 7, 2009 MB... ) MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Oxygen I am beginnning to think I don';t have IPF. Because my new oxygen supplier only has portables for liquid oxygen that hold 2-3 hours of oxygen I have been without oxygen for the last couple of days when out and I feel just fine. I am beginning to thik that being on oxygen these last few months has healed my lungs and now they are ok....but as far as I know I haven't been breathless but then Ihaven't noticed my breathing. so maybe luck is with me and I don't have IPF!Joyce AZ IPF 11-08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2009 Report Share Posted March 7, 2009 MB... ) MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Oxygen I am beginnning to think I don';t have IPF. Because my new oxygen supplier only has portables for liquid oxygen that hold 2-3 hours of oxygen I have been without oxygen for the last couple of days when out and I feel just fine. I am beginning to thik that being on oxygen these last few months has healed my lungs and now they are ok....but as far as I know I haven't been breathless but then Ihaven't noticed my breathing. so maybe luck is with me and I don't have IPF!Joyce AZ IPF 11-08 Quote Link to comment Share on other sites More sharing options...
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