Guest guest Posted June 21, 2008 Report Share Posted June 21, 2008 To Sherry... Just dropping in to say hi. It was nice listening/talking to you on chat Thursday. 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! >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 24, 2008 Report Share Posted June 24, 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 24, 2008 Report Share Posted June 24, 2008 Sherry, I got an email from Becky Black. She is having the support group meeting in Chattanooga on 9/16/2008. I'll email you more about it later. Toodles! Yea! Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl > > > >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 24, 2008 Report Share Posted June 24, 2008 Sherry... well, if 70 is your "ecstatic goal" then I will have an extra bite of cake just for you and make a wish you make it too! lol 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 > > > > >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 > > > >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 > > > > >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 completely understand your thinking. I'm glad I'm too old for a transplant here in Oregon. The final choice is not in my hands. I would opt out in any case. So where are you in this process? Too sick right now for an eval, and then you will have one or won't have one? I can imagine the huge decision Sherry. As I said, I'm really glad I don't have to make one for transplant. With all the other problems I have I simply could not add a TRANSPLANT onto the pile. However, I'm glad that option is available to you should you choose it. There are those who do well with transplant. Are you familiar with Ginger's transplant journey? She is one remarkable case, from beginning to currently. If everyone could have a transplant like she, we'd be banging on doors pleading for one! ~~~~ BTW, I just spotted a place where some of us get confused with posts...see where you tucked my post right up under your name, and my signature is a couple spaces on down? It appears as though what I wrote you is FROM you. (Someone was asking me about this just yesterday). Whatever is from you is best understood if it is within the body of your post and not below your name. Thanks for being a 'good example'... ; ) Hope today is a good one for you and you soon feel better! 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 Hi Sherry I have the same concerns with transplant as you do. Whether the tx would help me to live longer or not. When I went for my initial evaluation they banded some average figures around and I had to discuss them and my prognosis with my pulmo doc. Over here (England) they won't put you forward for tx until your prognosis is less than your prognosis with a tx. I don't know if it's the same in the US, but it's worth checking out if you're still undecided. I wish you strength for whatever decision you choose Love Ze xx> > > > > >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 27, 2008 Report Share Posted June 27, 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 27, 2008 Report Share Posted June 27, 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...
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