Guest guest Posted March 5, 2009 Report Share Posted March 5, 2009 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 Hi Joyce, Have you confirmed your airline reservations to Jewish? I am pretty sure they will give you an accurate current diagnosis. I believe if the first pulmo I saw in 97 had given me antibiotics and insisted I stay on o2 that I may not be where I am today. I felt like you, that I was feeling better and no longer needed it. He did not explain otherwise. That particular pulmo was more focused on his wife going to the Olympics in Australia than giving his patients the best of care that they deserved. I don't know what would have happened to me if his office partner hadn't stepped in, admitted me and given me the oxygen. They soon after that were no longer office partners. It is sad that the Pulmo's wife is a pathologist at the hospital also. I think they were more focused on their athletic competition than anything else at that point in their lives.... That guy was a little wise a-- twit. The other pulmo was older and wiser and since retired but does drop in at the hospital when he is in town, he now lives in Greece. I forget, do you have an oximeter to do random checks throughout the day? I saw my pulmo Tuesday. He went to the U of Colorado medical school and did work in tuberculosis at Jewish. He said for what I have the University medical school hospital would be better. He just doesn't want me to travel and I don't plan on going anywhere in the next six weeks until I see him again so I am really going to look into the travel oxygen sources available and push him as to exactly why he doesn't want me to go anywhere...I know it has raised my spirits when I have these past two years. How many days is it until your appointment? Take it easy and don't stress and confuse yourself by over thinking it all. As my doc told me when I was so stressed by my oxygen line hang ups...he said, some people don't have oxygen, think, some people are not able to have the extensive work up you are going to have...look at how fortunate you are!!! 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 3:34:00 PMSubject: 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 Hi Joyce, Have you confirmed your airline reservations to Jewish? I am pretty sure they will give you an accurate current diagnosis. I believe if the first pulmo I saw in 97 had given me antibiotics and insisted I stay on o2 that I may not be where I am today. I felt like you, that I was feeling better and no longer needed it. He did not explain otherwise. That particular pulmo was more focused on his wife going to the Olympics in Australia than giving his patients the best of care that they deserved. I don't know what would have happened to me if his office partner hadn't stepped in, admitted me and given me the oxygen. They soon after that were no longer office partners. It is sad that the Pulmo's wife is a pathologist at the hospital also. I think they were more focused on their athletic competition than anything else at that point in their lives.... That guy was a little wise a-- twit. The other pulmo was older and wiser and since retired but does drop in at the hospital when he is in town, he now lives in Greece. I forget, do you have an oximeter to do random checks throughout the day? I saw my pulmo Tuesday. He went to the U of Colorado medical school and did work in tuberculosis at Jewish. He said for what I have the University medical school hospital would be better. He just doesn't want me to travel and I don't plan on going anywhere in the next six weeks until I see him again so I am really going to look into the travel oxygen sources available and push him as to exactly why he doesn't want me to go anywhere...I know it has raised my spirits when I have these past two years. How many days is it until your appointment? Take it easy and don't stress and confuse yourself by over thinking it all. As my doc told me when I was so stressed by my oxygen line hang ups...he said, some people don't have oxygen, think, some people are not able to have the extensive work up you are going to have...look at how fortunate you are!!! 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 3:34:00 PMSubject: 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 Thanks Margaret for posting this...you took the words right out of my mouth. Joyce I'm really glad you are feeling better but I would encourage you strongly to continue on the path you are on and go to Jewish for your evaluation. This is your best opportunity to get a complete and accurate diagnosis. You need more information information information about what is going on with your body and specifically your lungs. I'm also more than a little puzzled by why you are going without oxygen during the day but that's a different topic. Do you have an oximeter? Do you know what your sats are when you aren't using oxygen. I just don't want you to do yourself harm. Be careful Joyce and please look after yourself! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Thursday, March 5, 2009 9:05:23 PMSubject: Re: Oxygen Hi Joyce, Have you confirmed your airline reservations to Jewish? I am pretty sure they will give you an accurate current diagnosis. I believe if the first pulmo I saw in 97 had given me antibiotics and insisted I stay on o2 that I may not be where I am today. I felt like you, that I was feeling better and no longer needed it. He did not explain otherwise. That particular pulmo was more focused on his wife going to the Olympics in Australia than giving his patients the best of care that they deserved. I don't know what would have happened to me if his office partner hadn't stepped in, admitted me and given me the oxygen. They soon after that were no longer office partners. It is sad that the Pulmo's wife is a pathologist at the hospital also. I think they were more focused on their athletic competition than anything else at that point in their lives.... That guy was a little wise a-- twit. The other pulmo was older and wiser and since retired but does drop in at the hospital when he is in town, he now lives in Greece. I forget, do you have an oximeter to do random checks throughout the day? I saw my pulmo Tuesday. He went to the U of Colorado medical school and did work in tuberculosis at Jewish. He said for what I have the University medical school hospital would be better. He just doesn't want me to travel and I don't plan on going anywhere in the next six weeks until I see him again so I am really going to look into the travel oxygen sources available and push him as to exactly why he doesn't want me to go anywhere...I know it has raised my spirits when I have these past two years. How many days is it until your appointment? Take it easy and don't stress and confuse yourself by over thinking it all. As my doc told me when I was so stressed by my oxygen line hang ups...he said, some people don't have oxygen, think, some people are not able to have the extensive work up you are going to have...look at how fortunate you are!!! 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 From: greycharlie <greycharlie@ q.com>To: Breathe-Support@ yahoogroups. comSent: Thursday, March 5, 2009 3:34:00 PMSubject: 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 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 10, 2009 Report Share Posted March 10, 2009 rudy joyce the wagon for bringing in the groceries is a great idea thanks Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 www.transplantfund.org--- Subject: Re: OxygenTo: Breathe-Support Date: Saturday, March 7, 2009, 1:44 PM Beth- I meant by becoming an invalid that I could only be away from home for a couple of hours and then had to return home. I did not mean to imply that oxygen made you an invalid. I will keepp after my supplier. I have no intentions of letting this condition stand but I can do no more then request for a better portable until I return from Jewish because I can't leave them until I return. And, I don't feel oxygen makes you an invalid. It's the restriction of time that I was refering too. As to my 'denial" I don't know what to say. I keep thinking I must have cheated on the pulmonary tests or something. Yet, I was sitting without oxygen for a long time and took my O2 and it was only at 91. If National Jewish says I have it then I will believe. I am really really upset that I have this disease. For the past 10 years my life has been so wonderful and I wanted it to continure until I am 100 and died in my sleep. during that time I had noticed that things were getting harder and harder to do and gave up on doing many things but I just thought I was lazy. I am fat and thought that was the problem and that I was lazy. When bringing the groceries from the car to the house became a prolem I bought a wagon and called my self a lazy fat slob but then putting them away becamje a problem I called myslef lazy again. I am sorry if I hurt your feelings. 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 10, 2009 Report Share Posted March 10, 2009 rudy joyce the wagon for bringing in the groceries is a great idea thanks Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 www.transplantfund.org--- Subject: Re: OxygenTo: Breathe-Support Date: Saturday, March 7, 2009, 1:44 PM Beth- I meant by becoming an invalid that I could only be away from home for a couple of hours and then had to return home. I did not mean to imply that oxygen made you an invalid. I will keepp after my supplier. I have no intentions of letting this condition stand but I can do no more then request for a better portable until I return from Jewish because I can't leave them until I return. And, I don't feel oxygen makes you an invalid. It's the restriction of time that I was refering too. As to my 'denial" I don't know what to say. I keep thinking I must have cheated on the pulmonary tests or something. Yet, I was sitting without oxygen for a long time and took my O2 and it was only at 91. If National Jewish says I have it then I will believe. I am really really upset that I have this disease. For the past 10 years my life has been so wonderful and I wanted it to continure until I am 100 and died in my sleep. during that time I had noticed that things were getting harder and harder to do and gave up on doing many things but I just thought I was lazy. I am fat and thought that was the problem and that I was lazy. When bringing the groceries from the car to the house became a prolem I bought a wagon and called my self a lazy fat slob but then putting them away becamje a problem I called myslef lazy again. I am sorry if I hurt your feelings. 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 10, 2009 Report Share Posted March 10, 2009 rudy joyce the wagon for bringing in the groceries is a great idea thanks Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 www.transplantfund.org--- Subject: Re: OxygenTo: Breathe-Support Date: Saturday, March 7, 2009, 1:44 PM Beth- I meant by becoming an invalid that I could only be away from home for a couple of hours and then had to return home. I did not mean to imply that oxygen made you an invalid. I will keepp after my supplier. I have no intentions of letting this condition stand but I can do no more then request for a better portable until I return from Jewish because I can't leave them until I return. And, I don't feel oxygen makes you an invalid. It's the restriction of time that I was refering too. As to my 'denial" I don't know what to say. I keep thinking I must have cheated on the pulmonary tests or something. Yet, I was sitting without oxygen for a long time and took my O2 and it was only at 91. If National Jewish says I have it then I will believe. I am really really upset that I have this disease. For the past 10 years my life has been so wonderful and I wanted it to continure until I am 100 and died in my sleep. during that time I had noticed that things were getting harder and harder to do and gave up on doing many things but I just thought I was lazy. I am fat and thought that was the problem and that I was lazy. When bringing the groceries from the car to the house became a prolem I bought a wagon and called my self a lazy fat slob but then putting them away becamje a problem I called myslef lazy again. I am sorry if I hurt your feelings. 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...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.