Guest guest Posted January 24, 2008 Report Share Posted January 24, 2008 Oh dear Joyce, I am so sorry to hear about your day. My chest and sternum area is also very tender and I can hardly stand an echo for that reason. As for the 6 min. walk test, I had mine done the way you described. My sats also dropped below 60 when I stopped. I agree this is not the " me " I want to be, but I pray for hope and courage to keep forging onward. I will also keep you in my prayers. God Bless, Tina IPF 04/07 PH 11/07 Ohio > > > I went today for some more testing. I went in for my echocardiagram and > the tech...first thing she said to me.... " Are you still smoking? " ...... > one of my Grumpies punched her right in the nose. I informed her that I > had never smoked and that Pulmonary Fibrosis was not caused by > smoking!!! I could see by the look on her face that she had no idea > what PF was. But, the rest of the test went fine. She was gentle and > nice. My chest wall and especially the sternum area are so tender. I > hate echos for that reason. I am sore tonight from it. She would not > give me info. I see the doc on the 4th...will know then. > > My 6 minute walk test was different than any I have ever done. Always > before they carried or pushed my portable, had me walk as slowly as > possible and kept me hooked to an oximeter. > > Here they said they followed the directions given by the American > Thoracic Society. They did not keep an oximeter on me. They told me to > push my own tank and walk at a pace that I would normally walk if I were > not sick. When I could no longer walk they would have me sit and take > my saturation reading. Well, I made it 1.48 minutes and had to stop. > My 02 was at 59. They said if they did it the way I always did it, I > would have been stopped at 88. Which means I would not have gotten out > the door into the hallway. > > To me, this is a much more realistic test. They had people every 10 > feet or so and a guy right behind me with a wheelchair. Bizarre! But, > this test makes sense to me. The other one is so controlled and > unrealistic. > > I am so very tired. And a little scared. When I finished rehab in > August and began maintainence, I was walking 30 minutes on the treadmill > at 5L...plus other excersizes. A very few months later, I can not walk > 2 minutes. > > My whole life has changed. I don't drive, I barely get out of the house > at all. > > And YES....I too HATE this disease!!! > > I don't like this poor, pityful me. This is not me. I feel like some > alien has taken over my body and I have no control. > > Hugs, Joyce > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2008 Report Share Posted January 24, 2008 Joyce, I'm glad that's over for you. You've been in my thoughts and prayers all day. That's so interesting about the 6 minute walk. It does seem much more realistic....hmmmm. I know you're scared and angry and feel lousy. I wish I could take it all away for you and for all of us. Love you!!! Beth in NC age 48 Fibrotic NSIP 06/06 "For as long as I shall live, I will testify to Love." Report from today! I went today for some more testing. I went in for my echocardiagram and the tech...first thing she said to me...."Are you still smoking?" ...... one of my Grumpies punched her right in the nose. I informed her that I had never smoked and that Pulmonary Fibrosis was not caused by smoking!!! I could see by the look on her face that she had no idea what PF was. But, the rest of the test went fine. She was gentle and nice. My chest wall and especially the sternum area are so tender. I hate echos for that reason. I am sore tonight from it. She would not give me info. I see the doc on the 4th...will know then. My 6 minute walk test was different than any I have ever done. Always before they carried or pushed my portable, had me walk as slowly as possible and kept me hooked to an oximeter. Here they said they followed the directions given by the American Thoracic Society. They did not keep an oximeter on me. They told me to push my own tank and walk at a pace that I would normally walk if I were not sick. When I could no longer walk they would have me sit and take my saturation reading. Well, I made it 1.48 minutes and had to stop. My 02 was at 59. They said if they did it the way I always did it, I would have been stopped at 88. Which means I would not have gotten out the door into the hallway. To me, this is a much more realistic test. They had people every 10 feet or so and a guy right behind me with a wheelchair. Bizarre! But, this test makes sense to me. The other one is so controlled and unrealistic. I am so very tired. And a little scared. When I finished rehab in August and began maintainence, I was walking 30 minutes on the treadmill at 5L...plus other excersizes. A very few months later, I can not walk 2 minutes. My whole life has changed. I don't drive, I barely get out of the house at all. And YES....I too HATE this disease!!! I don't like this poor, pityful me. This is not me. I feel like some alien has taken over my body and I have no control. Hugs, Joyce Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2008 Report Share Posted January 24, 2008 Oh i wish you had really punched her.....can you give me her name and directions....i'll go do it....not a court in the world that would convict me. An alien has taken over your body unfortunately. But your heart and soul and what's really you, the wonderful woman....the alien can't have that. We all hate the disease.....I'm sure all wonder why us, too. I hate it so for those of you suffering more than me, although I know thats to come for me. And the ignorance and rudeness of people on top of that. I am as anti- smoking as anyone and mine might well be from second hand smoke but even if I saw someone with COPD that was known to be from smoking and I knew they'd smoked for 30 years, I'd never mention it. Not even when true but then when its sheer ignorance. I don't know whether I would have punched her, kept quiet, or said to her " I hope to God that you never have to go through this nor see one of your family members do so. I hope you never have to experience it and have someone say something as ignorant and hurtful to you. " > > > I went today for some more testing. I went in for my echocardiagram and > the tech...first thing she said to me.... " Are you still smoking? " ...... > one of my Grumpies punched her right in the nose. I informed her that I > had never smoked and that Pulmonary Fibrosis was not caused by > smoking!!! I could see by the look on her face that she had no idea > what PF was. But, the rest of the test went fine. She was gentle and > nice. My chest wall and especially the sternum area are so tender. I > hate echos for that reason. I am sore tonight from it. She would not > give me info. I see the doc on the 4th...will know then. > > My 6 minute walk test was different than any I have ever done. Always > before they carried or pushed my portable, had me walk as slowly as > possible and kept me hooked to an oximeter. > > Here they said they followed the directions given by the American > Thoracic Society. They did not keep an oximeter on me. They told me to > push my own tank and walk at a pace that I would normally walk if I were > not sick. When I could no longer walk they would have me sit and take > my saturation reading. Well, I made it 1.48 minutes and had to stop. > My 02 was at 59. They said if they did it the way I always did it, I > would have been stopped at 88. Which means I would not have gotten out > the door into the hallway. > > To me, this is a much more realistic test. They had people every 10 > feet or so and a guy right behind me with a wheelchair. Bizarre! But, > this test makes sense to me. The other one is so controlled and > unrealistic. > > I am so very tired. And a little scared. When I finished rehab in > August and began maintainence, I was walking 30 minutes on the treadmill > at 5L...plus other excersizes. A very few months later, I can not walk > 2 minutes. > > My whole life has changed. I don't drive, I barely get out of the house > at all. > > And YES....I too HATE this disease!!! > > I don't like this poor, pityful me. This is not me. I feel like some > alien has taken over my body and I have no control. > > Hugs, Joyce > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2008 Report Share Posted January 24, 2008 Joyce, I'm so sorry to read about your condition. Let's just pray that a miracle will occur and life will be better for you. I have good news about me, but will post that message separately. Love and Aloha, Judy (25 mi N of Cincinnati)IPF 11/06 L Lung Transplant 8/07 Lung Collapse 11/07 > > > I went today for some more testing. I went in for my echocardiagram and > the tech...first thing she said to me.... " Are you still smoking? " ...... > one of my Grumpies punched her right in the nose. I informed her that I > had never smoked and that Pulmonary Fibrosis was not caused by > smoking!!! I could see by the look on her face that she had no idea > what PF was. But, the rest of the test went fine. She was gentle and > nice. My chest wall and especially the sternum area are so tender. I > hate echos for that reason. I am sore tonight from it. She would not > give me info. I see the doc on the 4th...will know then. > > My 6 minute walk test was different than any I have ever done. Always > before they carried or pushed my portable, had me walk as slowly as > possible and kept me hooked to an oximeter. > > Here they said they followed the directions given by the American > Thoracic Society. They did not keep an oximeter on me. They told me to > push my own tank and walk at a pace that I would normally walk if I were > not sick. When I could no longer walk they would have me sit and take > my saturation reading. Well, I made it 1.48 minutes and had to stop. > My 02 was at 59. They said if they did it the way I always did it, I > would have been stopped at 88. Which means I would not have gotten out > the door into the hallway. > > To me, this is a much more realistic test. They had people every 10 > feet or so and a guy right behind me with a wheelchair. Bizarre! But, > this test makes sense to me. The other one is so controlled and > unrealistic. > > I am so very tired. And a little scared. When I finished rehab in > August and began maintainence, I was walking 30 minutes on the treadmill > at 5L...plus other excersizes. A very few months later, I can not walk > 2 minutes. > > My whole life has changed. I don't drive, I barely get out of the house > at all. > > And YES....I too HATE this disease!!! > > I don't like this poor, pityful me. This is not me. I feel like some > alien has taken over my body and I have no control. > > Hugs, Joyce > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2008 Report Share Posted January 24, 2008 Bruce, I believe the reason why there is not more research or awareness is that there is no compassion for people with lung disease. Most people see oxygen and think well, she did that to herself. I don't feel pity for her. Who wants to give money for research to help people who make themselves sick. We stopped for lunch on the way home today. I sat there and felt like people were looking at me thinking that very thing. It will take days for the stupid remark to fade. Why can't people just keep thier mouths shut? Some days are coal! Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.> >> > > > I went today for some more testing. I went in for my > echocardiagram and> > the tech...first thing she said to me...."Are you still > smoking?" ......> > one of my Grumpies punched her right in the nose. I informed her > that I> > had never smoked and that Pulmonary Fibrosis was not caused by> > smoking!!! I could see by the look on her face that she had no idea> > what PF was. But, the rest of the test went fine. She was gentle > and> > nice. My chest wall and especially the sternum area are so > tender. I> > hate echos for that reason. I am sore tonight from it. She would > not> > give me info. I see the doc on the 4th...will know then.> > > > My 6 minute walk test was different than any I have ever done. > Always> > before they carried or pushed my portable, had me walk as slowly as> > possible and kept me hooked to an oximeter.> > > > Here they said they followed the directions given by the American> > Thoracic Society. They did not keep an oximeter on me. They told > me to> > push my own tank and walk at a pace that I would normally walk if I > were> > not sick. When I could no longer walk they would have me sit and > take> > my saturation reading. Well, I made it 1.48 minutes and had to > stop. > > My 02 was at 59. They said if they did it the way I always did it, > I> > would have been stopped at 88. Which means I would not have gotten > out> > the door into the hallway.> > > > To me, this is a much more realistic test. They had people every 10> > feet or so and a guy right behind me with a wheelchair. Bizarre! > But,> > this test makes sense to me. The other one is so controlled and> > unrealistic.> > > > I am so very tired. And a little scared. When I finished rehab in> > August and began maintainence, I was walking 30 minutes on the > treadmill> > at 5L...plus other excersizes. A very few months later, I can not > walk> > 2 minutes.> > > > My whole life has changed. I don't drive, I barely get out of the > house> > at all.> > > > And YES....I too HATE this disease!!!> > > > I don't like this poor, pityful me. This is not me. I feel like > some> > alien has taken over my body and I have no control.> > > > Hugs, Joyce> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2008 Report Share Posted January 24, 2008 Joyce, of course this isn't you! You have every right to feel scared! You have had this awful illness for so long! If you are like me you just get adjusted to one level and then it changes again. I'm glad they tested you this " new " way. Now, everyone should be fully aware of just how sob you are and maybe that will speed up the procedure so you can breathe better! I hope you have some medication that will releive you of any pain and that you can sleep tonight. Let those Grumpies get some rest so they can help you with your illness in the morning. Extra hugs and prayers for you. Kathie WA NSIP '96 > > > I went today for some more testing. I went in for my echocardiagram and > the tech...first thing she said to me.... " Are you still smoking? " ...... > one of my Grumpies punched her right in the nose. I informed her that I > had never smoked and that Pulmonary Fibrosis was not caused by > smoking!!! I could see by the look on her face that she had no idea > what PF was. But, the rest of the test went fine. She was gentle and > nice. My chest wall and especially the sternum area are so tender. I > hate echos for that reason. I am sore tonight from it. She would not > give me info. I see the doc on the 4th...will know then. > > My 6 minute walk test was different than any I have ever done. Always > before they carried or pushed my portable, had me walk as slowly as > possible and kept me hooked to an oximeter. > > Here they said they followed the directions given by the American > Thoracic Society. They did not keep an oximeter on me. They told me to > push my own tank and walk at a pace that I would normally walk if I were > not sick. When I could no longer walk they would have me sit and take > my saturation reading. Well, I made it 1.48 minutes and had to stop. > My 02 was at 59. They said if they did it the way I always did it, I > would have been stopped at 88. Which means I would not have gotten out > the door into the hallway. > > To me, this is a much more realistic test. They had people every 10 > feet or so and a guy right behind me with a wheelchair. Bizarre! But, > this test makes sense to me. The other one is so controlled and > unrealistic. > > I am so very tired. And a little scared. When I finished rehab in > August and began maintainence, I was walking 30 minutes on the treadmill > at 5L...plus other excersizes. A very few months later, I can not walk > 2 minutes. > > My whole life has changed. I don't drive, I barely get out of the house > at all. > > And YES....I too HATE this disease!!! > > I don't like this poor, pityful me. This is not me. I feel like some > alien has taken over my body and I have no control. > > Hugs, Joyce > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2008 Report Share Posted January 24, 2008 Well, add to that the fact that the ONLY topic the American Lung Association seems to be interested in is sending direct mail to try to lead anti-smoking campaigns. I get all their solicitations and thats all they are. Front page of their site, no PF. Right now either PFF or CPF is funding more research on PF than the ALA with their small budgets. Far more. In fact with $43 million, ALA only spends $8 million on all research combined. They spend more than that on fund raising. They spend $24 million on direct mail. But obviously their strategy is working. The money is flowing in. Just none of it helping us. > > > > > > > > > I went today for some more testing. I went in for my > > echocardiagram and > > > the tech...first thing she said to me.... " Are you still > > smoking? " ...... > > > one of my Grumpies punched her right in the nose. I informed her > > that I > > > had never smoked and that Pulmonary Fibrosis was not caused by > > > smoking!!! I could see by the look on her face that she had no idea > > > what PF was. But, the rest of the test went fine. She was gentle > > and > > > nice. My chest wall and especially the sternum area are so > > tender. I > > > hate echos for that reason. I am sore tonight from it. She would > > not > > > give me info. I see the doc on the 4th...will know then. > > > > > > My 6 minute walk test was different than any I have ever done. > > Always > > > before they carried or pushed my portable, had me walk as slowly as > > > possible and kept me hooked to an oximeter. > > > > > > Here they said they followed the directions given by the American > > > Thoracic Society. They did not keep an oximeter on me. They told > > me to > > > push my own tank and walk at a pace that I would normally walk if I > > were > > > not sick. When I could no longer walk they would have me sit and > > take > > > my saturation reading. Well, I made it 1.48 minutes and had to > > stop. > > > My 02 was at 59. They said if they did it the way I always did it, > > I > > > would have been stopped at 88. Which means I would not have gotten > > out > > > the door into the hallway. > > > > > > To me, this is a much more realistic test. They had people every 10 > > > feet or so and a guy right behind me with a wheelchair. Bizarre! > > But, > > > this test makes sense to me. The other one is so controlled and > > > unrealistic. > > > > > > I am so very tired. And a little scared. When I finished rehab in > > > August and began maintainence, I was walking 30 minutes on the > > treadmill > > > at 5L...plus other excersizes. A very few months later, I can not > > walk > > > 2 minutes. > > > > > > My whole life has changed. I don't drive, I barely get out of the > > house > > > at all. > > > > > > And YES....I too HATE this disease!!! > > > > > > I don't like this poor, pityful me. This is not me. I feel like > > some > > > alien has taken over my body and I have no control. > > > > > > Hugs, Joyce > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2008 Report Share Posted January 24, 2008 Joyce, I think you are right. Twelve years ago after my biopsy, I was still relatively young (not nearly as young as so many of our group) and the assumption was not made by so many that I was a smoker. There were a lot of comments like " you're too young " and then the other " smoking " question. I often would ask the person who asked if they were a smoker before I answered. If they said " yes " then sometimes I would tell them I had been, too. I did this only because often when asked by a smoker if I smoked when they heard " no " they would sigh in relief. Now that I'm older people don't seem to notice as often. Maybe because I'm 59 it is " acceptable " or maybe I'm at the " invisible age " lol. Kathie > > > > > > > > > I went today for some more testing. I went in for my > > echocardiagram and > > > the tech...first thing she said to me.... " Are you still > > smoking? " ...... > > > one of my Grumpies punched her right in the nose. I informed her > > that I > > > had never smoked and that Pulmonary Fibrosis was not caused by > > > smoking!!! I could see by the look on her face that she had no idea > > > what PF was. But, the rest of the test went fine. She was gentle > > and > > > nice. My chest wall and especially the sternum area are so > > tender. I > > > hate echos for that reason. I am sore tonight from it. She would > > not > > > give me info. I see the doc on the 4th...will know then. > > > > > > My 6 minute walk test was different than any I have ever done. > > Always > > > before they carried or pushed my portable, had me walk as slowly as > > > possible and kept me hooked to an oximeter. > > > > > > Here they said they followed the directions given by the American > > > Thoracic Society. They did not keep an oximeter on me. They told > > me to > > > push my own tank and walk at a pace that I would normally walk if I > > were > > > not sick. When I could no longer walk they would have me sit and > > take > > > my saturation reading. Well, I made it 1.48 minutes and had to > > stop. > > > My 02 was at 59. They said if they did it the way I always did it, > > I > > > would have been stopped at 88. Which means I would not have gotten > > out > > > the door into the hallway. > > > > > > To me, this is a much more realistic test. They had people every 10 > > > feet or so and a guy right behind me with a wheelchair. Bizarre! > > But, > > > this test makes sense to me. The other one is so controlled and > > > unrealistic. > > > > > > I am so very tired. And a little scared. When I finished rehab in > > > August and began maintainence, I was walking 30 minutes on the > > treadmill > > > at 5L...plus other excersizes. A very few months later, I can not > > walk > > > 2 minutes. > > > > > > My whole life has changed. I don't drive, I barely get out of the > > house > > > at all. > > > > > > And YES....I too HATE this disease!!! > > > > > > I don't like this poor, pityful me. This is not me. I feel like > > some > > > alien has taken over my body and I have no control. > > > > > > Hugs, Joyce > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2008 Report Share Posted January 25, 2008 (((Joyce))) I hope you're more comfortable today xxx Love Ze xx>> Joyce,> I'm glad that's over for you. You've been in my thoughts and prayers all day. That's so interesting about the 6 minute walk. It does seem much more realistic....hmmmm.> I know you're scared and angry and feel lousy. I wish I could take it all away for you and for all of us. > Love you!!!> > Beth in NC age 48 Fibrotic NSIP 06/06> > "For as long as I shall live, I will testify to Love."> > > > > > Report from today!> > I went today for some more testing. I went in for my echocardiagram and the tech...first thing she said to me...."Are you still smoking?" ...... one of my Grumpies punched her right in the nose. I informed her that I had never smoked and that Pulmonary Fibrosis was not caused by smoking!!! I could see by the look on her face that she had no idea what PF was. But, the rest of the test went fine. She was gentle and nice. My chest wall and especially the sternum area are so tender. I hate echos for that reason. I am sore tonight from it. She would not give me info. I see the doc on the 4th...will know then. > My 6 minute walk test was different than any I have ever done. Always before they carried or pushed my portable, had me walk as slowly as possible and kept me hooked to an oximeter. > Here they said they followed the directions given by the American Thoracic Society. They did not keep an oximeter on me. They told me to push my own tank and walk at a pace that I would normally walk if I were not sick. When I could no longer walk they would have me sit and take my saturation reading. Well, I made it 1.48 minutes and had to stop. My 02 was at 59. They said if they did it the way I always did it, I would have been stopped at 88. Which means I would not have gotten out the door into the hallway. > To me, this is a much more realistic test. They had people every 10 feet or so and a guy right behind me with a wheelchair. Bizarre! But, this test makes sense to me. The other one is so controlled and unrealistic. > I am so very tired. And a little scared. When I finished rehab in August and began maintainence, I was walking 30 minutes on the treadmill at 5L...plus other excersizes. A very few months later, I can not walk 2 minutes. > My whole life has changed. I don't drive, I barely get out of the house at all. > And YES....I too HATE this disease!!! > I don't like this poor, pityful me. This is not me. I feel like some alien has taken over my body and I have no control. > Hugs, Joyce> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2008 Report Share Posted January 25, 2008 Joyce, My heart goes out to you! Your in my thoughts and prayers and I would have the grumpies too! Sandie > > > I went today for some more testing. I went in for my echocardiagram and > the tech...first thing she said to me.... " Are you still smoking? " ...... > one of my Grumpies punched her right in the nose. I informed her that I > had never smoked and that Pulmonary Fibrosis was not caused by > smoking!!! I could see by the look on her face that she had no idea > what PF was. But, the rest of the test went fine. She was gentle and > nice. My chest wall and especially the sternum area are so tender. I > hate echos for that reason. I am sore tonight from it. She would not > give me info. I see the doc on the 4th...will know then. > > My 6 minute walk test was different than any I have ever done. Always > before they carried or pushed my portable, had me walk as slowly as > possible and kept me hooked to an oximeter. > > Here they said they followed the directions given by the American > Thoracic Society. They did not keep an oximeter on me. They told me to > push my own tank and walk at a pace that I would normally walk if I were > not sick. When I could no longer walk they would have me sit and take > my saturation reading. Well, I made it 1.48 minutes and had to stop. > My 02 was at 59. They said if they did it the way I always did it, I > would have been stopped at 88. Which means I would not have gotten out > the door into the hallway. > > To me, this is a much more realistic test. They had people every 10 > feet or so and a guy right behind me with a wheelchair. Bizarre! But, > this test makes sense to me. The other one is so controlled and > unrealistic. > > I am so very tired. And a little scared. When I finished rehab in > August and began maintainence, I was walking 30 minutes on the treadmill > at 5L...plus other excersizes. A very few months later, I can not walk > 2 minutes. > > My whole life has changed. I don't drive, I barely get out of the house > at all. > > And YES....I too HATE this disease!!! > > I don't like this poor, pityful me. This is not me. I feel like some > alien has taken over my body and I have no control. > > Hugs, Joyce > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2008 Report Share Posted January 25, 2008 Joyce, Now I know why the six minute walk test (How do you think they came up with six minutes? Why not 5 minutes? 3 minutes?) that I had last september was structured as it was. I did not know that the american thor. soc. had guidelines. That was one of the question I asked at the October meeting but not answered yet. Except the RT kept telling me to walk faster and faster get your heatrate up. I am limited to walking because of the neuropathy in my feet. In I it says, that man always looks on the outward appearance but God looks at one's heart. I always see your heart, above all. It is shining brightly! Love & Toodles Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl > >> > > > I went today for some more testing. I went in for my > echocardiagram and> > the tech...first thing she said to me...."Are you still > smoking?" ......> > one of my Grumpies punched her right in the nose. I informed her > that I> > had never smoked and that Pulmonary Fibrosis was not caused by> > smoking!!! I could see by the look on her face that she had no idea> > what PF was. But, the rest of the test went fine. She was gentle > and> > nice. My chest wall and especially the sternum area are so > tender. I> > hate echos for that reason. I am sore tonight from it. She would > not> > give me info. I see the doc on the 4th...will know then.> > > > My 6 minute walk test was different than any I have ever done. > Always> > before they carried or pushed my portable, had me walk as slowly as> > possible and kept me hooked to an oximeter.> > > > Here they said they followed the directions given by the American> > Thoracic Society. They did not keep an oximeter on me. They told > me to> > push my own tank and walk at a pace that I would normally walk if I > were> > not sick. When I could no longer walk they would have me sit and > take> > my saturation reading. Well, I made it 1.48 minutes and had to > stop. > > My 02 was at 59. They said if they did it the way I always did it, > I> > would have been stopped at 88. Which means I would not have gotten > out> > the door into the hallway.> > > > To me, this is a much more realistic test. They had people every 10> > feet or so and a guy right behind me with a wheelchair. Bizarre! > But,> > this test makes sense to me. The other one is so controlled and> > unrealistic.> > > > I am so very tired. And a little scared. When I finished rehab in> > August and began maintainence, I was walking 30 minutes on the > treadmill> > at 5L...plus other excersizes. A very few months later, I can not > walk> > 2 minutes.> > > > My whole life has changed. I don't drive, I barely get out of the > house> > at all.> > > > And YES....I too HATE this disease!!!> > > > I don't like this poor, pityful me. This is not me. I feel like > some> > alien has taken over my body and I have no control.> > > > Hugs, Joyce> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2008 Report Share Posted January 25, 2008 Joyce...well, when I don't know what to say that could help or I've already said everything I think can....I've resorted to, DAMNIT! You get a damnit this morning Joyce. I do like the way you took the 6/min/walk. Sounds far more reasonable and ultimately revealing! Yeah, you're right Joyce...an "alien" has taken over your body and "aliens" like to control. I pray for you Joyce. Awarm hug to you. Mama-Sher, 69; IPF, 3-06, OR.Don't fret about tomorrow, God is already there! Report from today! I went today for some more testing. I went in for my echocardiagram and the tech...first thing she said to me...."Are you still smoking?" ...... one of my Grumpies punched her right in the nose. I informed her that I had never smoked and that Pulmonary Fibrosis was not caused by smoking!!! I could see by the look on her face that she had no idea what PF was. But, the rest of the test went fine. She was gentle and nice. My chest wall and especially the sternum area are so tender. I hate echos for that reason. I am sore tonight from it. She would not give me info. I see the doc on the 4th...will know then. My 6 minute walk test was different than any I have ever done. Always before they carried or pushed my portable, had me walk as slowly as possible and kept me hooked to an oximeter. Here they said they followed the directions given by the American Thoracic Society. They did not keep an oximeter on me. They told me to push my own tank and walk at a pace that I would normally walk if I were not sick. When I could no longer walk they would have me sit and take my saturation reading. Well, I made it 1.48 minutes and had to stop. My 02 was at 59. They said if they did it the way I always did it, I would have been stopped at 88. Which means I would not have gotten out the door into the hallway. To me, this is a much more realistic test. They had people every 10 feet or so and a guy right behind me with a wheelchair. Bizarre! But, this test makes sense to me. The other one is so controlled and unrealistic. I am so very tired. And a little scared. When I finished rehab in August and began maintainence, I was walking 30 minutes on the treadmill at 5L...plus other excersizes. A very few months later, I can not walk 2 minutes. My whole life has changed. I don't drive, I barely get out of the house at all. And YES....I too HATE this disease!!! I don't like this poor, pityful me. This is not me. I feel like some alien has taken over my body and I have no control. Hugs, Joyce Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2008 Report Share Posted January 25, 2008 Yeah, I get their weekly emails and it's always about asthma, smoking and COPD, never a word about PF or IPF. Makes me so mad. I've even emailed them and asked them to include articles about PF at least on occasion, but of course, no response... I also emailed one of our local TV stations, with no response. I'll get around to the other 2 here soon. Hey Bruce, maybe you could write to and he could include us in his next documentary about health care in America. Babs in Texas > > > > > > > > > > > > I went today for some more testing. I went in for my > > > echocardiagram and > > > > the tech...first thing she said to me.... " Are you still > > > smoking? " ...... > > > > one of my Grumpies punched her right in the nose. I informed her > > > that I > > > > had never smoked and that Pulmonary Fibrosis was not caused by > > > > smoking!!! I could see by the look on her face that she had no > idea > > > > what PF was. But, the rest of the test went fine. She was gentle > > > and > > > > nice. My chest wall and especially the sternum area are so > > > tender. I > > > > hate echos for that reason. I am sore tonight from it. She would > > > not > > > > give me info. I see the doc on the 4th...will know then. > > > > > > > > My 6 minute walk test was different than any I have ever done. > > > Always > > > > before they carried or pushed my portable, had me walk as > slowly as > > > > possible and kept me hooked to an oximeter. > > > > > > > > Here they said they followed the directions given by the > American > > > > Thoracic Society. They did not keep an oximeter on me. They told > > > me to > > > > push my own tank and walk at a pace that I would normally walk > if I > > > were > > > > not sick. When I could no longer walk they would have me sit and > > > take > > > > my saturation reading. Well, I made it 1.48 minutes and had to > > > stop. > > > > My 02 was at 59. They said if they did it the way I always did > it, > > > I > > > > would have been stopped at 88. Which means I would not have > gotten > > > out > > > > the door into the hallway. > > > > > > > > To me, this is a much more realistic test. They had people > every 10 > > > > feet or so and a guy right behind me with a wheelchair. Bizarre! > > > But, > > > > this test makes sense to me. The other one is so controlled and > > > > unrealistic. > > > > > > > > I am so very tired. And a little scared. When I finished rehab > in > > > > August and began maintainence, I was walking 30 minutes on the > > > treadmill > > > > at 5L...plus other excersizes. A very few months later, I can > not > > > walk > > > > 2 minutes. > > > > > > > > My whole life has changed. I don't drive, I barely get out of > the > > > house > > > > at all. > > > > > > > > And YES....I too HATE this disease!!! > > > > > > > > I don't like this poor, pityful me. This is not me. I feel like > > > some > > > > alien has taken over my body and I have no control. > > > > > > > > Hugs, Joyce > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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