Guest guest Posted November 21, 2003 Report Share Posted November 21, 2003 Is there a Chinese apocathary (herbalist) in your town? If so, I'd suggest that you see him/her; I've found that for things like colds, upset stomach, constipation, and other minor-but-annoying matters their herbs and potions are often as good as or even better than Western chemicals, and usually without the side effects. update i've been really sick for about 10 days now. caught a cold from hubby and it turned into God knows what! haven't seen the doctor and missed my flu shot as i am sick. but when i called in again a few days ago, he put me on augmentin xr and also wrote a script for tylenol and codeine liquid! ugh! thought it must be full of carbs as it is sweet but it has no effect on my bg's which is good. on the other hand, it has no effect on the deep cough either. my personal opinion is that my body is coughing up all the crap from years of smoking. so it may take another week or two to expel it all. phlegm is clear (which makes me wonder why the antibiotic) but i don't fight with the doctor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2003 Report Share Posted November 21, 2003 Is there a Chinese apocathary (herbalist) in your town? _________________ hi bruce! that gave me my laugh of the day there isn't even a asian family in my town! i wish i was in chicago so i could look into some alternative meds. many, many years ago (early 70's), i used acupuncture to withdraw from methadone which i was put on to withdraw from another evil drug. inever understood why the doctors rushed to get us off of one drug and addicted to another one! jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2008 Report Share Posted January 9, 2008 Ken, This takes the award for the best news of the day! I pray that Pirfenidone is the answer. There are so many young people on this site and so many that we don't even know about that have families and deserve to have a life. I think you people who went into this study and others like it are heros! God bless you. Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.>> An update on my status (good News)> I went for my 48 week visit on the Pirfenidone study and had my PFT> and 6 Minute Walk Test. My Volume was about the same and my DLCO was> up higher than it had ever been at 69%. I went further than ever in> the 6MWT without oxygen keeping my sat level at 90%. > > Ken Baker IPF 12/05 NH> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2008 Report Share Posted January 9, 2008 GET OUT, YEAH !!!!!! That is WONDERFUL. Oh Ken I am so thrilled for you. Are you still on it ? Will you stay on it after the trial is over ? This is such good news. Love and Prayers, Peggy ipf 6/04 Florida"Worry looks around, Sorry looks back, Faith looks up." An update on my status (good News)I went for my 48 week visit on the Pirfenidone study and had my PFTand 6 Minute Walk Test. My Volume was about the same and my DLCO wasup higher than it had ever been at 69%. I went further than ever inthe 6MWT without oxygen keeping my sat level at 90%. Ken Baker IPF 12/05 NH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2008 Report Share Posted January 10, 2008 Ken... so does this post mean you must be getting the "good pill" and this study shows we can be helped? I was invited to join a study once but did not want to do the OLB (I guess now it's VATS) required. Is there another reason your numbers improve? Thanks for the info. I'm glad for you...whatever it is. Mama-Sher, 69; IPF, 3-06, OR.Don't fret about tomorrow, God is already there! Update An update on my status (good News)I went for my 48 week visit on the Pirfenidone study and had my PFTand 6 Minute Walk Test. My Volume was about the same and my DLCO wasup higher than it had ever been at 69%. I went further than ever inthe 6MWT without oxygen keeping my sat level at 90%. Ken Baker IPF 12/05 NH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2008 Report Share Posted January 10, 2008 Sher, I will not know if I’m on ‘the real stuff’ or not until the study concludes late this year. I’ve been exercising heavily but have not been in pulmonary rehab yet. I have been tracking my PFT numbers since my initial diagnosis in Dec ’05. I had a VATS biopsy in Oct ’06 and still have some numbness and tingling in my torso from what I believe was nerve damage (which I was told is common in VATS procedures). I try to do an hour daily on the treadmill at 3.2 – 3.4 MPH with moderate elevation. In addition I do 40 situps daily. I’ve been exercising since my VATS but have been doing less time over the last month or so (only 4-5 days a week and 30 to 45 minutes). I went 1955 feet in my last 6MWT up from 1790 a year ago. I don’t have any answers on why I’ve improved but am happy about it and hope it continues to trend up for me. Ken Baker UIP/IPF 12/05 From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of Sher Bauman Sent: Thursday, January 10, 2008 12:39 PM To: Breathe-Support Subject: Re: Update Ken... so does this post mean you must be getting the " good pill " and this study shows we can be helped? I was invited to join a study once but did not want to do the OLB (I guess now it's VATS) required. Is there another reason your numbers improve? Thanks for the info. I'm glad for you...whatever it is. Mama-Sher, 69; IPF, 3-06, OR. Don't fret about tomorrow, God is already there! Update An update on my status (good News) I went for my 48 week visit on the Pirfenidone study and had my PFT and 6 Minute Walk Test. My Volume was about the same and my DLCO was up higher than it had ever been at 69%. I went further than ever in the 6MWT without oxygen keeping my sat level at 90%. Ken Baker IPF 12/05 NH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2008 Report Share Posted January 10, 2008 Hate to seem ignorant. As I am new what is a PFT and how do you track it? Thanks, Todd > > Sher, > > I will not know if I'm on 'the real stuff' or not until the study concludes > late this year. I've been exercising heavily but have not been in pulmonary > rehab yet. I have been tracking my PFT numbers since my initial diagnosis > in Dec '05. I had a VATS biopsy in Oct '06 and still have some numbness and > tingling in my torso from what I believe was nerve damage (which I was told > is common in VATS procedures). I try to do an hour daily on the treadmill > at 3.2 - 3.4 MPH with moderate elevation. In addition I do 40 situps daily. > I've been exercising since my VATS but have been doing less time over the > last month or so (only 4-5 days a week and 30 to 45 minutes). I went 1955 > feet in my last 6MWT up from 1790 a year ago. I don't have any answers on > why I've improved but am happy about it and hope it continues to trend up > for me. > > Ken Baker UIP/IPF 12/05 > > > > _____ > > From: Breathe-Support > [mailto:Breathe-Support ] On Behalf Of Sher Bauman > Sent: Thursday, January 10, 2008 12:39 PM > To: Breathe-Support > Subject: Re: Update > > > > Ken... so does this post mean you must be getting the " good pill " and this > study shows we can be helped? > > I was invited to join a study once but did not want to do the OLB (I guess > now it's VATS) required. > > Is there another reason your numbers improve? > > Thanks for the info. I'm glad for you...whatever it is. > > Mama-Sher, 69; IPF, 3-06, OR. > Don't fret about tomorrow, God is already there! > > Update > > > > An update on my status (good News) > I went for my 48 week visit on the Pirfenidone study and had my PFT > and 6 Minute Walk Test. My Volume was about the same and my DLCO was > up higher than it had ever been at 69%. I went further than ever in > the 6MWT without oxygen keeping my sat level at 90%. > > Ken Baker IPF 12/05 NH > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2008 Report Share Posted January 10, 2008 Thanks Ken - Are these measurements also something that comes from the Spirometry test? > > > > Sher, > > > > I will not know if I'm on 'the real stuff' or not until the study > concludes > > late this year. I've been exercising heavily but have not been in > pulmonary > > rehab yet. I have been tracking my PFT numbers since my initial > diagnosis > > in Dec '05. I had a VATS biopsy in Oct '06 and still have some > numbness and > > tingling in my torso from what I believe was nerve damage (which I > was told > > is common in VATS procedures). I try to do an hour daily on the > treadmill > > at 3.2 - 3.4 MPH with moderate elevation. In addition I do 40 > situps daily. > > I've been exercising since my VATS but have been doing less time > over the > > last month or so (only 4-5 days a week and 30 to 45 minutes). I > went 1955 > > feet in my last 6MWT up from 1790 a year ago. I don't have any > answers on > > why I've improved but am happy about it and hope it continues to > trend up > > for me. > > > > Ken Baker UIP/IPF 12/05 > > > > > > > > _____ > > > > From: Breathe-Support@ <mailto:Breathe-Support%40yahoogroups.com> > yahoogroups.com > > [mailto:Breathe-Support@ <mailto:Breathe-Support% 40yahoogroups.com> > yahoogroups.com] On Behalf Of Sher Bauman > > Sent: Thursday, January 10, 2008 12:39 PM > > To: Breathe-Support@ <mailto:Breathe-Support%40yahoogroups.com> > yahoogroups.com > > Subject: Re: Update > > > > > > > > Ken... so does this post mean you must be getting the " good pill " > and this > > study shows we can be helped? > > > > I was invited to join a study once but did not want to do the OLB > (I guess > > now it's VATS) required. > > > > Is there another reason your numbers improve? > > > > Thanks for the info. I'm glad for you...whatever it is. > > > > Mama-Sher, 69; IPF, 3-06, OR. > > Don't fret about tomorrow, God is already there! > > > > Update > > > > > > > > An update on my status (good News) > > I went for my 48 week visit on the Pirfenidone study and had my PFT > > and 6 Minute Walk Test. My Volume was about the same and my DLCO was > > up higher than it had ever been at 69%. I went further than ever in > > the 6MWT without oxygen keeping my sat level at 90%. > > > > Ken Baker IPF 12/05 NH > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2008 Report Share Posted January 10, 2008 Ken...Yeah, keep on keepin' on! Upwards and onwards. I admire you doing the exercise. I'm not good with that because of sob and I'm not on O2. Mama-Sher, 69; IPF, 3-06, OR.Don't fret about tomorrow, God is already there! Update An update on my status (good News)I went for my 48 week visit on the Pirfenidone study and had my PFTand 6 Minute Walk Test. My Volume was about the same and my DLCO wasup higher than it had ever been at 69%. I went further than ever inthe 6MWT without oxygen keeping my sat level at 90%. Ken Baker IPF 12/05 NH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2008 Report Share Posted January 10, 2008 Ken, I take so many medications that I make a chart to keep track of the daily doses!!! There is a database here where many of us have listed our medications. Z fibriotic NSIP/05 Z fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! Potter, reader,carousel lover and MomMom to Darah “I’m gonna be iron like a lion in Zion” Bob Marley Ken's RR Mail wrote: , I’m on prevastatin for high cholesterol and omeprazole for gerd no other med or supplements. My diffusion is labeled DsbHb on the report but is referred to as DLCO so I believe that they are the same From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of linda zion Sent: Thursday, January 10, 2008 1:09 AM To: Breathe-Support Subject: Re: Update Ken ...What a good report!!!!What beside the Pirfenidone are you taking or doing? The DLCO rate is really good...did you do anything specific for those results? My Diffusion rate was 34% in October..I go again in March. Z fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! Potter, reader,carousel lover and MomMom to Darah “I’m gonna be iron like a lion in Zion” Bob Marley Ken Baker wrote: An update on my status (good News) I went for my 48 week visit on the Pirfenidone study and had my PFT and 6 Minute Walk Test. My Volume was about the same and my DLCO was up higher than it had ever been at 69%. I went further than ever in the 6MWT without oxygen keeping my sat level at 90%. Ken Baker IPF 12/05 NH No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.19.0/1216 - Release Date: 1/9/2008 10:16 AM No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.19.0/1216 - Release Date: 1/9/2008 10:16 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2008 Report Share Posted January 11, 2008 Bruce, My favorite prescription time table was Cellcept. I took 8 a day. The instructions were to take throughout the day on an empty stomach. My stomach is empty when I get up in the morning. That is it! Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.> > >> > > An update on my status (good News)> > > I went for my 48 week visit on the Pirfenidone study and had my > PFT> > > and 6 Minute Walk Test. My Volume was about the same and my DLCO > was> > > up higher than it had ever been at 69%. I went further than ever > in> > > the 6MWT without oxygen keeping my sat level at 90%.> > >> > > Ken Baker IPF 12/05 NH> > >> > > > > >> > >> > >> > >-------------------------------------------------------------------> -----> > >> > >> > > > > >> > >No virus found in this incoming message.> > >> > >Checked by AVG Free Edition. > > >> > >Version: 7.5.516 / Virus Database: 269.19.0/1216 - Release Date: > 1/9/2008 10:16 AM> > >> > > > > >> > > > > >> > >-------------------------------------------------------------------> -----> > >> > >No virus found in this incoming message.> > >Checked by AVG Free Edition. > > >Version: 7.5.516 / Virus Database: 269.19.0/1216 - Release Date: > 1/9/2008 10:16 AM> > > > > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2008 Report Share Posted January 11, 2008 Joyce.... Yes, what is empty? One hour...two.....do I have to go between? Do I need a GI to see if my food has gone down? Is it truly empty when you wake? Well, mine is because can't do last minute snacks due to Nexium at bedtime....darn it all. Now why would anyone write such instructions that everyone would interpret differently or just ignore. > > > > > > > > An update on my status (good News) > > > > I went for my 48 week visit on the Pirfenidone study and had my > > PFT > > > > and 6 Minute Walk Test. My Volume was about the same and my DLCO > > was > > > > up higher than it had ever been at 69%. I went further than ever > > in > > > > the 6MWT without oxygen keeping my sat level at 90%. > > > > > > > > Ken Baker IPF 12/05 NH > > > > > > > > > > > > > > > > > > > > > > > >--------------------------------------------------------------- ---- > > ----- > > > > > > > > > > > > > > > > > > > >No virus found in this incoming message. > > > > > > > >Checked by AVG Free Edition. > > > > > > > >Version: 7.5.516 / Virus Database: 269.19.0/1216 - Release Date: > > 1/9/2008 10:16 AM > > > > > > > > > > > > > > > > > > > > > > > >--------------------------------------------------------------- ---- > > ----- > > > > > > > >No virus found in this incoming message. > > > >Checked by AVG Free Edition. > > > >Version: 7.5.516 / Virus Database: 269.19.0/1216 - Release Date: > > 1/9/2008 10:16 AM > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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