Guest guest Posted June 7, 2006 Report Share Posted June 7, 2006 Hi Everyone...I have been having a heck of a time reading and posting messages...so I have missed the Chats.....I'll reset my computer tomorrow and see if that helps. GOOD NEWS! My Eye doc today said there is not longer ANY-AS IN NO- INFLAMMITORY CELLS IN MY EYES! I've been down to a trace before after the injections...buy never ~0~ So the Remicade is doing it job....I AM SO BLESSED!! I just so much want this drug to be available to all those that can need it. I have spoken with both my Rheumitologist and now with the Eye doc about documenting these results not only for the insurance benifets but so that when they encounter the next patient - Remicade will be available. ( It took my Rheumatologist months to come on board and prescribe Remicade!) I am afraid to get my hopes up too much as I know there are hurdles and side effect to cross!! Has anyone heard any more from Kim? I have been sending her notes and prayers but was wondering. TTFN Ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2006 Report Share Posted June 8, 2006 Ruth, Good for you. I am so glad that the Remicade is working for you. It seems to be helping so many people. Hugs, DebbieRuth wrote: Hi Everyone...I have been having a heck of a time reading and posting messages...so I have missed the Chats.....I'll reset my computer tomorrow and see if that helps. GOOD NEWS! My Eye doc today said there is not longer ANY-AS IN NO- INFLAMMITORY CELLS IN MY EYES! I've been down to a trace before after the injections...buy never ~0~ So the Remicade is doing it job....I AM SO BLESSED!! I just so much want this drug to be available to all those that can need it. I have spoken with both my Rheumitologist and now with the Eye doc about documenting these results not only for the insurance benifets but so that when they encounter the next patient - Remicade will be available. ( It took my Rheumatologist months to come on board and prescribe Remicade!) I am afraid to get my hopes up too much as I know there are hurdles and side effect to cross!! Has anyone heard any more from Kim? I have been sending her notes and prayers but was wondering. TTFN Ruth __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2006 Report Share Posted June 8, 2006 Ruth, Good for you. I am so glad that the Remicade is working for you. It seems to be helping so many people. Hugs, DebbieRuth wrote: Hi Everyone...I have been having a heck of a time reading and posting messages...so I have missed the Chats.....I'll reset my computer tomorrow and see if that helps. GOOD NEWS! My Eye doc today said there is not longer ANY-AS IN NO- INFLAMMITORY CELLS IN MY EYES! I've been down to a trace before after the injections...buy never ~0~ So the Remicade is doing it job....I AM SO BLESSED!! I just so much want this drug to be available to all those that can need it. I have spoken with both my Rheumitologist and now with the Eye doc about documenting these results not only for the insurance benifets but so that when they encounter the next patient - Remicade will be available. ( It took my Rheumatologist months to come on board and prescribe Remicade!) I am afraid to get my hopes up too much as I know there are hurdles and side effect to cross!! Has anyone heard any more from Kim? I have been sending her notes and prayers but was wondering. TTFN Ruth __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2009 Report Share Posted May 4, 2009 How has he determined you don't need it during the day time? > > I just got off the phone with my pulmo dude's office. He reviewed all the CT films from my previous pulmo dude. He said that there's no change from CT done a year ago and now. I'm still on a prednisone taper. He says so far he doesn't feel that I need O2 in the daytime. So, I'll continue with bedtime O2 only. I'm doing an overnight oximetry study thurs. and he said he'll call me next week with results on that. > He says unless I run into a problem, I don't need to see him until October. > Hope all are having a breathe easy day! > Nan 49, MASS > started the list in '82 > Added PF '08 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2009 Report Share Posted May 5, 2009 Hi Bruce, He says that, so far, my walk tests have shown that my SATS don't drop enough. He hasn't done a 6 minute yet. The RA and fibromyalgia stop me from being able to walk for 6 minutes. As soon as I get enough money together, I'm buying an oximter. I think that my SATS drop more than they realize. Once I get the oximeter, I'll be able to chart my SATS as I move during a normal day doing normal activities. Also, doing the oximetry study I think will give him a better picture of where I am. Nan 49, MASS list started in '82 PF added in '08 > > > > I just got off the phone with my pulmo dude's office. He reviewed all > the CT films from my previous pulmo dude. He said that there's no change > from CT done a year ago and now. I'm still on a prednisone taper. He > says so far he doesn't feel that I need O2 in the daytime. So, I'll > continue with bedtime O2 only. I'm doing an overnight oximetry study > thurs. and he said he'll call me next week with results on that. > > He says unless I run into a problem, I don't need to see him until > October. > > Hope all are having a breathe easy day! > > Nan 49, MASS > > started the list in '82 > > Added PF '08 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2009 Report Share Posted May 6, 2009 the first time the doc ordered O2, i walked and talked at the same time, the o2 dropped into the 80's quickly a couple of weeks ago, i had to have another test for medicare to justify paying for my o2 my sats were in the 90's while walking on a level surface, so i went upstairs a couple of times, they really dropped see if there are stairs at your doc's office, the next time you walk my 6 min walk today, was on room air, on a level surface, no talking, so i did well Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 inactive 4/09 www.transplantfund.org--- Subject: Re: Good NewsTo: Breathe-Support Date: Tuesday, May 5, 2009, 1:57 PM Bruce, I think he's going on what the previous pulmo said. I will definately ask him about doing a 24 hour test. So far, I've had PFTs in the hospital resp. lab and in the office, Ct scans and 2 sleep studies. But that's it. Everytime they check my SATS in the hospital or office, I usually get between 92 and 96. That's at total rest and after sitting for a few minutes. I never asked about his experience w/ PF. I should have and it's not like me to not check that stuff out first before seeing a new doctor. Thank you for bring this to my attn. Nan, 49, MASSlisted started in '82PF added in '08> > > >> > > > I just got off the phone with my pulmo dude's office. He reviewed> all> > > the CT films from my previous pulmo dude. He said that there's no> change> > > from CT done a year ago and now. I'm still on a prednisone taper. He> > > says so far he doesn't feel that I need O2 in the daytime. So, I'll> > > continue with bedtime O2 only. I'm doing an overnight oximetry study> > > thurs. and he said he'll call me next week with results on that.> > > > He says unless I run into a problem, I don't need to see him until> > > October.> > > > Hope all are having a breathe easy day!> > > > Nan 49, MASS> > > > started the list in '82> > > > Added PF '08> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2009 Report Share Posted May 7, 2009 Hi Joyce, My next scheduled appt. w/ pulmo dude isn't until October. But, Jack has been kind enough to purchase an oximeter for me. ( A BIG thank you to Jack!! ) I'm going to chart a few days of normal activity and average stressors. Then, I'll have better info for him. He said if I have any problems or concerns before we meet again to just call. So we shall see. Nan 49, MASS Listed started in '82 PF added in '08 > > > > > > > > > > I just got off the phone with my pulmo dude's office. He reviewed > > all > > > > the CT films from my previous pulmo dude. He said that there's no > > change > > > > from CT done a year ago and now. I'm still on a prednisone taper. He > > > > says so far he doesn't feel that I need O2 in the daytime. So, I'll > > > > continue with bedtime O2 only. I'm doing an overnight oximetry study > > > > thurs. and he said he'll call me next week with results on that. > > > > > He says unless I run into a problem, I don't need to see him until > > > > October. > > > > > Hope all are having a breathe easy day! > > > > > Nan 49, MASS > > > > > started the list in '82 > > > > > Added PF '08 > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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