Guest guest Posted June 23, 2008 Report Share Posted June 23, 2008 > >Hi Jane, > > Oh, that sounds so great. If I remember correctly, you are on a > clinical trial using sidenafil - am I correct? I would LOVE to have > those numbers about now. > > Keep up the great job. > > Sherry , TN, NSIP 2008, bronchiectasis, PBC > > > > Hi to all! I have been in Atlanta yesterday & today was my 6 week > study > > appointment. at Emory. Time has just flown by since I started the > Step > > Trial. Today I had PFTs, 6MW, Blood tests, Questionaires ( a whole > > notebook of them actually) and saw Dr. & Tamra. Dr. > tells > > me the rash on my right hand is NOT eczema. He said it was > vascular in > > nature and I might have touched something. I will have to give them > > updates on it through email. The highlight of the day for me today > was: > > The 6MW !!!!! Yea! When I finished it, the RT hugged me!!! I > > completed 270 meters in 6 minutes. I was on room air the entire > walk, I > > did not have to stop, I did not get dizzy, etc. The lowest sat > rate was > > 82% but mostly it was around 85% or higher. In 2.5 minutes, when > the > > walk was completed, my sat recovered to 95% and I was still on room > air > > and I was standing up!! I had all the PFTs before the 6MW and all > of > > those tests are stable and maybe a few points higher. Today's DLCO > > measured 8.9. The previous DLCO measured 7.9. Basically I range > > between 34% and 43%. I learned today that there are different > standards > > of measurement for PFTs. TLC was 2.66 or 60 %. The only test > that is > > so difficult for me is: FVC. I attempted that one many times. > Maybe I > > will eventually learn to do that one. My FVC numbers were stable > from > > February to June. I am going to ask Max to give me some lessons on > > panting. Maybe by August 1st, I will be ready to pant! > > > > 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 June 23, 2008 Report Share Posted June 23, 2008 Hi again Sherry... chat is fun isn't it. Sometimes I get lost when we all talk at once but it's a nice way to get more acquainted. My b'day is Aug. 4. Of course who's counting days? I remember you juggle a lot of plates in the air. I hope you're doing ok today. MamaSher, age 69. IPF 3-06, OR./ NasturtiumsDon't fret about tomorrow, God is already there! Re: I'm Back!To Sherry > >Hi Jane,> > Oh, that sounds so great. If I remember correctly, you are on a > clinical trial using sidenafil - am I correct? I would LOVE to have > those numbers about now. > > Keep up the great job. > > Sherry , TN, NSIP 2008, bronchiectasis, PBC> > > > Hi to all! I have been in Atlanta yesterday & today was my 6 week > study> > appointment. at Emory. Time has just flown by since I started the > Step> > Trial. Today I had PFTs, 6MW, Blood tests, Questionaires ( a whole> > notebook of them actually) and saw Dr. & Tamra. Dr. > tells> > me the rash on my right hand is NOT eczema. He said it was > vascular in> > nature and I might have touched something. I will have to give them> > updates on it through email. The highlight of the day for me today > was:> > The 6MW !!!!! Yea! When I finished it, the RT hugged me!!! I> > completed 270 meters in 6 minutes. I was on room air the entire > walk, I> > did not have to stop, I did not get dizzy, etc. The lowest sat > rate was> > 82% but mostly it was around 85% or higher. In 2.5 minutes, when > the> > walk was completed, my sat recovered to 95% and I was still on room > air> > and I was standing up!! I had all the PFTs before the 6MW and all > of> > those tests are stable and maybe a few points higher. Today's DLCO> > measured 8.9. The previous DLCO measured 7.9. Basically I range> > between 34% and 43%. I learned today that there are different > standards> > of measurement for PFTs. TLC was 2.66 or 60 %. The only test > that is> > so difficult for me is: FVC. I attempted that one many times. > Maybe I> > will eventually learn to do that one. My FVC numbers were stable > from> > February to June. I am going to ask Max to give me some lessons on> > panting. Maybe by August 1st, I will be ready to pant!> > > > 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 June 25, 2008 Report Share Posted June 25, 2008 Did I read this right? You are "trying to avoid going thru' eval for transplant"? You do not want a transplant? MamaSher, age 69. IPF 3-06, OR./ NasturtiumsDon't fret about tomorrow, God is already there! Re: I'm Back!To Sherry > > > >Hi Jane,> > > > > > Oh, that sounds so great. If I remember correctly, you are on a > > > clinical trial using sidenafil - am I correct? I would LOVE to > > have > > > those numbers about now. > > > > > > Keep up the great job. > > > > > > Sherry , TN, NSIP 2008, bronchiectasis, PBC> > > > > > > > Hi to all! I have been in Atlanta yesterday & today was my 6 > > week > > > study> > > > appointment. at Emory. Time has just flown by since I started > > the > > > Step> > > > Trial. Today I had PFTs, 6MW, Blood tests, Questionaires ( a > > whole> > > > notebook of them actually) and saw Dr. & Tamra. Dr. > > > > tells> > > > me the rash on my right hand is NOT eczema. He said it was > > > vascular in> > > > nature and I might have touched something. I will have to > give > > them> > > > updates on it through email. The highlight of the day for me > > today > > > was:> > > > The 6MW !!!!! Yea! When I finished it, the RT hugged me!!! I> > > > completed 270 meters in 6 minutes. I was on room air the > entire > > > walk, I> > > > did not have to stop, I did not get dizzy, etc. The lowest > sat > > > rate was> > > > 82% but mostly it was around 85% or higher. In 2.5 minutes, > > when > > > the> > > > walk was completed, my sat recovered to 95% and I was still > on > > room > > > air> > > > and I was standing up!! I had all the PFTs before the 6MW and > > all > > > of> > > > those tests are stable and maybe a few points higher. Today's > > DLCO> > > > measured 8.9. The previous DLCO measured 7.9. Basically I > range> > > > between 34% and 43%. I learned today that there are different > > > standards> > > > of measurement for PFTs. TLC was 2.66 or 60 %. The only test > > > that is> > > > so difficult for me is: FVC. I attempted that one many times. > > > Maybe I> > > > will eventually learn to do that one. My FVC numbers were > > stable > > > from> > > > February to June. I am going to ask Max to give me some > lessons > > on> > > > panting. Maybe by August 1st, I will be ready to pant!> > > > > > > > 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 June 26, 2008 Report Share Posted June 26, 2008 Sherry.... I made a huge boo-boo! I referred to "Ginger's transplant" instead of Gwynne's transplant. I'm sorry...I find myself making these mistakes lately. MamaSher, age 69. IPF 3-06, OR./ NasturtiumsDon't fret about tomorrow, God is already there! Re: I'm Back!To Sherry > > > > >Hi Jane,> > > > > > > > Oh, that sounds so great. If I remember correctly, you are on > a > > > > clinical trial using sidenafil - am I correct? I would LOVE > to > > > have > > > > those numbers about now. > > > > > > > > Keep up the great job. > > > > > > > > Sherry , TN, NSIP 2008, bronchiectasis, PBC> > > > > > > > > > Hi to all! I have been in Atlanta yesterday & today was my > 6 > > > week > > > > study> > > > > appointment. at Emory. Time has just flown by since I > started > > > the > > > > Step> > > > > Trial. Today I had PFTs, 6MW, Blood tests, Questionaires ( > a > > > whole> > > > > notebook of them actually) and saw Dr. & Tamra. Dr. > > > > > > tells> > > > > me the rash on my right hand is NOT eczema. He said it was > > > > vascular in> > > > > nature and I might have touched something. I will have to > > give > > > them> > > > > updates on it through email. The highlight of the day for > me > > > today > > > > was:> > > > > The 6MW !!!!! Yea! When I finished it, the RT hugged me!!! I> > > > > completed 270 meters in 6 minutes. I was on room air the > > entire > > > > walk, I> > > > > did not have to stop, I did not get dizzy, etc. The lowest > > sat > > > > rate was> > > > > 82% but mostly it was around 85% or higher. In 2.5 minutes, > > > when > > > > the> > > > > walk was completed, my sat recovered to 95% and I was still > > on > > > room > > > > air> > > > > and I was standing up!! I had all the PFTs before the 6MW > and > > > all > > > > of> > > > > those tests are stable and maybe a few points higher. > Today's > > > DLCO> > > > > measured 8.9. The previous DLCO measured 7.9. Basically I > > range> > > > > between 34% and 43%. I learned today that there are > different > > > > standards> > > > > of measurement for PFTs. TLC was 2.66 or 60 %. The only > test > > > > that is> > > > > so difficult for me is: FVC. I attempted that one many > times. > > > > Maybe I> > > > > will eventually learn to do that one. My FVC numbers were > > > stable > > > > from> > > > > February to June. I am going to ask Max to give me some > > lessons > > > on> > > > > panting. Maybe by August 1st, I will be ready to pant!> > > > > > > > > > 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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