Guest guest Posted May 10, 2008 Report Share Posted May 10, 2008 JANE, YOU GO GIRL!!! CARRIE UNDERWOOD AND TRIAL BOTH IN THE SAME LEFETIME....WISH I WAS WITH YOU...SEE YA SOON     JOE/JOANIE JOE 60 IPF1/2008 GRIFFIN, GA. -- Jane's In Hi! Just posting that I am officially in the STEP Trial and I havealready had two doses of the sidenafil/placebo ???? I had to take oneat the Clinic and wait an hour. I had two very hard 6MW and did not doas well as two weeks ago. Tamra (nurse) contributed it to having had 4inhalations of albuterol during PFTs and then having the walkafterwards. Today I had no PFTs and no ABGs. My allergies were reallyacting up today in Atlanta. And when I got home, I got somechlortrimeton, an old antihistamine. Dr. said that the oldantihistamimines are better than the new ones at drying up this sinuscrud. ( I have always wanted an answer and I hope it works)Tamra said that I made it into the trial by one or two points. Both ofmy 6 MW had to be compared and then they did some math formulas. Theyalso did math formulas with my DLCO which ended up to 34% compared toanother way to look at it two weeks ago 39%. The future PFTs and 6MWwon't be compared.My ex-doctor at Emory saw me two weeks ago. He asked Tamra (nurse)about my chart lying on the counter and she told him that I was in astudy. And he doesn't participate in studies! I wondered why he wavedat me two weeks ago. Maybe next Friday when I go back, I might speak tohim!While & I were waiting for Tamra to make copies of my tests, etc.we were invited to eat lunch with them. went down the hall andfixed two plates and we ate it in the eam room. Now how is that!!!! Iguess since I was bringing them some new IPF booklets that Leanne mailedto me this week, well, it helps I know.Time for bed. I am so tired and excited. & I are going toNashville tomorrow afternoon for the Underwood concert atOpryland and I am really looking forward to it! Woo-Whoo!Toodles!Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2008 Report Share Posted May 10, 2008 Joe, Have you thought about participating in any trials? Jane > > JANE, YOU GO GIRL!!! CARRIE UNDERWOOD AND TRIAL BOTH IN THE SAME LEFETIME... > WISH I WAS WITH YOU...SEE YA SOON > >     JOE/JOANIE > JOE 60 IPF1/2008 > GRIFFIN, GA. > -- Jane's In > > > Hi! Just posting that I am officially in the STEP Trial and I have > already had two doses of the sidenafil/placebo ???? I had to take one > at the Clinic and wait an hour. I had two very hard 6MW and did not do > as well as two weeks ago. Tamra (nurse) contributed it to having had 4 > inhalations of albuterol during PFTs and then having the walk > afterwards. Today I had no PFTs and no ABGs. My allergies were really > acting up today in Atlanta. And when I got home, I got some > chlortrimeton, an old antihistamine. Dr. said that the old > antihistamimines are better than the new ones at drying up this sinus > crud. ( I have always wanted an answer and I hope it works) > > Tamra said that I made it into the trial by one or two points. Both of > my 6 MW had to be compared and then they did some math formulas. They > also did math formulas with my DLCO which ended up to 34% compared to > another way to look at it two weeks ago 39%. The future PFTs and 6MW > won't be compared. > > My ex-doctor at Emory saw me two weeks ago. He asked Tamra (nurse) > about my chart lying on the counter and she told him that I was in a > study. And he doesn't participate in studies! I wondered why he waved > at me two weeks ago. Maybe next Friday when I go back, I might speak to > him! > > While & I were waiting for Tamra to make copies of my tests, etc. > we were invited to eat lunch with them. went down the hall and > fixed two plates and we ate it in the eam room. Now how is that!!!! I > guess since I was bringing them some new IPF booklets that Leanne mailed > to me this week, well, it helps I know. > > Time for bed. I am so tired and excited. & I are going to > Nashville tomorrow afternoon for the Underwood concert at > Opryland and I am really looking forward to it! Woo-Whoo! > > Toodles! > > Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2008 Report Share Posted May 10, 2008 Jane, Congratulations on making the trial roster. I am so proud of you! You are really a go-getter. I pray that the treatment is not the placebo and that it works wonders for you! A Underwood concert! I love her. I can't believe that you can stand the crowds and navigate through them. I panic in situations like that. Are you using a wheelchair? Have a good Mother's Day with . Hugs, Joyce >> > Hi! Just posting that I am officially in the STEP Trial and I have> already had two doses of the sidenafil/placebo ???? I had to take one> at the Clinic and wait an hour. I had two very hard 6MW and did not do> as well as two weeks ago. Tamra (nurse) contributed it to having had 4> inhalations of albuterol during PFTs and then having the walk> afterwards. Today I had no PFTs and no ABGs. My allergies were really> acting up today in Atlanta. And when I got home, I got some> chlortrimeton, an old antihistamine. Dr. said that the old> antihistamimines are better than the new ones at drying up this sinus> crud. ( I have always wanted an answer and I hope it works)> > Tamra said that I made it into the trial by one or two points. Both of> my 6 MW had to be compared and then they did some math formulas. They> also did math formulas with my DLCO which ended up to 34% compared to> another way to look at it two weeks ago 39%. The future PFTs and 6MW> won't be compared.> > My ex-doctor at Emory saw me two weeks ago. He asked Tamra (nurse)> about my chart lying on the counter and she told him that I was in a> study. And he doesn't participate in studies! I wondered why he waved> at me two weeks ago. Maybe next Friday when I go back, I might speak to> him!> > While & I were waiting for Tamra to make copies of my tests, etc.> we were invited to eat lunch with them. went down the hall and> fixed two plates and we ate it in the eam room. Now how is that!!!! I> guess since I was bringing them some new IPF booklets that Leanne mailed> to me this week, well, it helps I know.> > Time for bed. I am so tired and excited. & I are going to> Nashville tomorrow afternoon for the Underwood concert at> Opryland and I am really looking forward to it! Woo-Whoo!> > Toodles!> > Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2008 Report Share Posted May 10, 2008 Hi Joyce, Thanks for the support. Those 6MW without O2 are awful. Now I really know how you feel. I didn't pass out or anything. They made me stop. I kept saying, that I could keep on. It brings to my attention that I am really bad, but the nurse, Tamra, tells me that I am not that sick. Of course, I love the money that I get when I go there. (That sounds bad, doesn't it? ha ha) is now calling the Grand Old Opry to find out about handicapped accessibility. We do have a wheelchair (at my parents' house) but tells me that it would be too hard. Now is thinking about the wheelchair. I have been there before and it is flat from the parking lot until you get inside. We have to go up an elevator to our seats. > >> >> > Hi! Just posting that I am officially in the STEP Trial and I have> > already had two doses of the sidenafil/placebo ???? I had to take one> > at the Clinic and wait an hour. I had two very hard 6MW and did not do> > as well as two weeks ago. Tamra (nurse) contributed it to having had 4> > inhalations of albuterol during PFTs and then having the walk> > afterwards. Today I had no PFTs and no ABGs. My allergies were really> > acting up today in Atlanta. And when I got home, I got some> > chlortrimeton, an old antihistamine. Dr. said that the old> > antihistamimines are better than the new ones at drying up this sinus> > crud. ( I have always wanted an answer and I hope it works)> >> > Tamra said that I made it into the trial by one or two points. Both of> > my 6 MW had to be compared and then they did some math formulas. They> > also did math formulas with my DLCO which ended up to 34% compared to> > another way to look at it two weeks ago 39%. The future PFTs and 6MW> > won't be compared.> >> > My ex-doctor at Emory saw me two weeks ago. He asked Tamra (nurse)> > about my chart lying on the counter and she told him that I was in a> > study. And he doesn't participate in studies! I wondered why he waved> > at me two weeks ago. Maybe next Friday when I go back, I might speak> to> > him!> >> > While & I were waiting for Tamra to make copies of my tests,> etc.> > we were invited to eat lunch with them. went down the hall and> > fixed two plates and we ate it in the eam room. Now how is that!!!! I> > guess since I was bringing them some new IPF booklets that Leanne> mailed> > to me this week, well, it helps I know.> >> > Time for bed. I am so tired and excited. & I are going to> > Nashville tomorrow afternoon for the Underwood concert at> > Opryland and I am really looking forward to it! Woo-Whoo!> >> > Toodles!> >> > Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2008 Report Share Posted May 10, 2008 Joyce You should have seen first Eddie and then Jane when he went in to check emails and found out. He then told her to come to the computer in the hotel lobby. I knew as excited as he looked, even though he was trying to contain it until she saw that was what it had to be. > > > > > > Hi! Just posting that I am officially in the STEP Trial and I have > > already had two doses of the sidenafil/placebo ???? I had to take one > > at the Clinic and wait an hour. I had two very hard 6MW and did not do > > as well as two weeks ago. Tamra (nurse) contributed it to having had 4 > > inhalations of albuterol during PFTs and then having the walk > > afterwards. Today I had no PFTs and no ABGs. My allergies were really > > acting up today in Atlanta. And when I got home, I got some > > chlortrimeton, an old antihistamine. Dr. said that the old > > antihistamimines are better than the new ones at drying up this sinus > > crud. ( I have always wanted an answer and I hope it works) > > > > Tamra said that I made it into the trial by one or two points. Both of > > my 6 MW had to be compared and then they did some math formulas. They > > also did math formulas with my DLCO which ended up to 34% compared to > > another way to look at it two weeks ago 39%. The future PFTs and 6MW > > won't be compared. > > > > My ex-doctor at Emory saw me two weeks ago. He asked Tamra (nurse) > > about my chart lying on the counter and she told him that I was in a > > study. And he doesn't participate in studies! I wondered why he waved > > at me two weeks ago. Maybe next Friday when I go back, I might speak > to > > him! > > > > While & I were waiting for Tamra to make copies of my tests, > etc. > > we were invited to eat lunch with them. went down the hall and > > fixed two plates and we ate it in the eam room. Now how is that!!!! I > > guess since I was bringing them some new IPF booklets that Leanne > mailed > > to me this week, well, it helps I know. > > > > Time for bed. I am so tired and excited. & I are going to > > Nashville tomorrow afternoon for the Underwood concert at > > Opryland and I am really looking forward to it! Woo-Whoo! > > > > Toodles! > > > > Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2008 Report Share Posted May 10, 2008 Jane I don't even want to think about where I'd be on a 6 minute walk without oxygen. Last time I did one was the day of diagnosis. I know I'd be in the 70's...and I don't like the 70's. > > > > > > > > > Hi! Just posting that I am officially in the STEP Trial and I have > > > already had two doses of the sidenafil/placebo ???? I had to take > one > > > at the Clinic and wait an hour. I had two very hard 6MW and did not > do > > > as well as two weeks ago. Tamra (nurse) contributed it to having had > 4 > > > inhalations of albuterol during PFTs and then having the walk > > > afterwards. Today I had no PFTs and no ABGs. My allergies were > really > > > acting up today in Atlanta. And when I got home, I got some > > > chlortrimeton, an old antihistamine. Dr. said that the old > > > antihistamimines are better than the new ones at drying up this > sinus > > > crud. ( I have always wanted an answer and I hope it works) > > > > > > Tamra said that I made it into the trial by one or two points. Both > of > > > my 6 MW had to be compared and then they did some math formulas. > They > > > also did math formulas with my DLCO which ended up to 34% compared > to > > > another way to look at it two weeks ago 39%. The future PFTs and 6MW > > > won't be compared. > > > > > > My ex-doctor at Emory saw me two weeks ago. He asked Tamra (nurse) > > > about my chart lying on the counter and she told him that I was in a > > > study. And he doesn't participate in studies! I wondered why he > waved > > > at me two weeks ago. Maybe next Friday when I go back, I might speak > > to > > > him! > > > > > > While & I were waiting for Tamra to make copies of my tests, > > etc. > > > we were invited to eat lunch with them. went down the hall and > > > fixed two plates and we ate it in the eam room. Now how is that!!!! > I > > > guess since I was bringing them some new IPF booklets that Leanne > > mailed > > > to me this week, well, it helps I know. > > > > > > Time for bed. I am so tired and excited. & I are going to > > > Nashville tomorrow afternoon for the Underwood concert at > > > Opryland and I am really looking forward to it! Woo-Whoo! > > > > > > Toodles! > > > > > > Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl > > > > > > Quote Link to comment Share on other sites More sharing options...
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