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 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...
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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