Guest guest Posted April 15, 2008 Report Share Posted April 15, 2008 Bruce...I realize we have about 5 hrs a day to "get out". I'm no good before 10,11, as you mention too. I like to be home by 3, 4 at the latest. Being so slow to do things sure makes a difference and yeah, it's nice not to have to get up at 6 anymore! TAA DAAAAA! Well, I walked the treadmill this morning. 1.7 mph for 12 min. My sats bumped at 86 -89 a few times but I was surprised it didn't fall more or more quickly. My heart rate went up to 101 but not for long. Soooo, I'm going to walk 10 min to begin and try and build up. OHHHH. That walk was w/NO O2! Sats didn't stay down, just bumped and then up again. I'm really confused about the O2 stuff. Briefly, Dr says , "she is now oxygen dependent" and in another place says it's vital I stay oxygenated to avoid occurrence or progression of PAH. Yet...my sats stay up pretty good, but....my 6 min walk was stopped at 3 min. (83). Treadmill was 'ok'....... The Echo results just came...."Normal". Results are being mailed to me and I'll go from there. I hate it when a secretary calls me...she can't answer any questions! Normal is good though. That helps me to take a deeper breath! Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Re: Sher SherYes, I try my hardest, although I've been somewhat unsuccessfulrecently, to schedule things no earlier than 11. I generally prefer tostay in for much of the morning and then get out and about and get homein time to relax and rest a bit before dinner. I also think its a bit of"I had to get up early so much of my life and I don't have to now sodarn it I'm not going to."> > > > > > > > >> > > > > > > > > Sher,> > > > > > > > > I'm happy to hear the doctors have switched your> > diagnosis. NSIP> > > > > > > > is definitely preferable to IPF, the life expectancy is> much> > longer> > > > > > > > and as a bonus, it does not always progress. As a matter> of> > fact,> > > > > > > > Dr. on at Duke just told me last month that he's> seen> > patients> > > > > > > > with NSIP who have been "stable for decades." I mean I> know> > that my> > > > > > > > experience may be different but anything that gives us> hope> > is> > > > > > > > helpful!> > > > > > > > > Have they switched your dx based on the behavior ofthe> > disease or> > > > > > > > also on the ct scan results? NSIP is usually very> > identifiable by CT> > > > > > > > scan. To identify the type of NSIP (fibrotic, cellularor> > mixed) you> > > > > > > > would need a biopsy. But at this point it probablydoesn't> > matter as> > > > > > > > long as your stable. I understand why you wouldn't put> > yourself> > > > > > > > through that. I don't regret my biopsy but I totally get> why> > you've> > > > > > > > chosen not to go down that road.> > > > > > > > > In the meantime, celebrate stability!! Stable is my> happy> > word!!> > > > > > > > > Beth> > > > > > > > > Age 48 Fibrotic NSIP 06/06> > > > > > > > >> > > > > > > > > Change everything. Love and Forgive> > > > > > > > >> > > > > > > >> > > > > > >> > > > > >> > > > > >> > > > > >> > > > > >> > > > > >> > > > > >> > > > > > Caro> > > > > > ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP> > 01/08, RHEUMATOID ARTHRITIS 03/08> > > > > > Mississippi> > > > > > ____________ _________ _________ _________ _________ __> > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2008 Report Share Posted April 15, 2008 Bruce....I'll answer in the morning....gee whiz, AI is on! Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Re: Sher/Bruce SherKey word if "sats are up." 86 (I notice you changed it to 87 this time) isn't up. Under 90 isn't up. Your oximeter does have an error range so 89 could really be 87 or 86. Better safe than sorry so you can keep the echo looking like this one. You try the treadmill once with oxygen and you will be amazed at the difference. Instead of bumping 86, you'll bump 90 and spend most of the time at 93 or higher and you'll think you're dreaming. No, an occasional bump below isn't that bad if you come right up but you'll have enough of those bumps by accident and when unplanned so best not have them when one is able to help it.> > > > > > > > > > >> > > > > > > > > > > Sher,> > > > > > > > > > > I'm happy to hear the doctors have switched your> > > > diagnosis. NSIP> > > > > > > > > > is definitely preferable to IPF, the life expectancy> is> > > much> > > > longer> > > > > > > > > > and as a bonus, it does not always progress. As a> matter> > > of> > > > fact,> > > > > > > > > > Dr. on at Duke just told me last month that he's> > > seen> > > > patients> > > > > > > > > > with NSIP who have been "stable for decades." I mean I> > > know> > > > that my> > > > > > > > > > experience may be different but anything that gives us> > > hope> > > > is> > > > > > > > > > helpful!> > > > > > > > > > > Have they switched your dx based on the behavior of> > the> > > > disease or> > > > > > > > > > also on the ct scan results? NSIP is usually very> > > > identifiable by CT> > > > > > > > > > scan. To identify the type of NSIP (fibrotic, cellular> > or> > > > mixed) you> > > > > > > > > > would need a biopsy. But at this point it probably> > doesn't> > > > matter as> > > > > > > > > > long as your stable. I understand why you wouldn't put> > > > yourself> > > > > > > > > > through that. I don't regret my biopsy but I totally> get> > > why> > > > you've> > > > > > > > > > chosen not to go down that road.> > > > > > > > > > > In the meantime, celebrate stability!! Stable is my> > > happy> > > > word!!> > > > > > > > > > > Beth> > > > > > > > > > > Age 48 Fibrotic NSIP 06/06> > > > > > > > > > >> > > > > > > > > > > Change everything. Love and Forgive> > > > > > > > > > >> > > > > > > > > >> > > > > > > > >> > > > > > > >> > > > > > > >> > > > > > > >> > > > > > > >> > > > > > > >> > > > > > > >> > > > > > > > Caro> > > > > > > > ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07,> UIP> > > > 01/08, RHEUMATOID ARTHRITIS 03/08> > > > > > > > Mississippi> > > > > > > > ____________ _________ _________ _________ _________ __> > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2008 Report Share Posted April 16, 2008 Bruce...obviously likes her shirt! Who knows who she might meet wearing the shirt! Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Re: Sher/Bruce SherOh, its long off here and our voting time is up. You better votecorrectly....lol wore her tshirt from Cook's high school, Blue Springs (Mo)South Jaguars, that I got her to school today. Now the real shock was astudent she didn't know walked up to her and said "did you go or teachthere?" Of course, said "no". Turns out the girl went to thathigh school last year and is now in Rowlett, TX.> > > > > > > > > > > >> > > > > > > > > > > > Sher,> > > > > > > > > > > > I'm happy to hear the doctors have switched> your> > > > > diagnosis. NSIP> > > > > > > > > > > is definitely preferable to IPF, the life> expectancy> > is> > > > much> > > > > longer> > > > > > > > > > > and as a bonus, it does not always progress. As> a> > matter> > > > of> > > > > fact,> > > > > > > > > > > Dr. on at Duke just told me last month> that he's> > > > seen> > > > > patients> > > > > > > > > > > with NSIP who have been "stable for decades." I> mean I> > > > know> > > > > that my> > > > > > > > > > > experience may be different but anything that> gives us> > > > hope> > > > > is> > > > > > > > > > > helpful!> > > > > > > > > > > > Have they switched your dx based on the> behavior of> > > the> > > > > disease or> > > > > > > > > > > also on the ct scan results? NSIP is usually> very> > > > > identifiable by CT> > > > > > > > > > > scan. To identify the type of NSIP (fibrotic,> cellular> > > or> > > > > mixed) you> > > > > > > > > > > would need a biopsy. But at this point it> probably> > > doesn't> > > > > matter as> > > > > > > > > > > long as your stable. I understand why you> wouldn't put> > > > > yourself> > > > > > > > > > > through that. I don't regret my biopsy but I> totally> > get> > > > why> > > > > you've> > > > > > > > > > > chosen not to go down that road.> > > > > > > > > > > > In the meantime, celebrate stability!! Stable> is my> > > > happy> > > > > word!!> > > > > > > > > > > > Beth> > > > > > > > > > > > Age 48 Fibrotic NSIP 06/06> > > > > > > > > > > >> > > > > > > > > > > > Change everything. Love and Forgive> > > > > > > > > > > >> > > > > > > > > > >> > > > > > > > > >> > > > > > > > >> > > > > > > > >> > > > > > > > >> > > > > > > > >> > > > > > > > >> > > > > > > > >> > > > > > > > > Caro> > > > > > > > > ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF> 08/07,> > UIP> > > > > 01/08, RHEUMATOID ARTHRITIS 03/08> > > > > > > > > Mississippi> > > > > > > > > ____________ _________ _________ _________> _________ __> > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2008 Report Share Posted April 16, 2008 Caro...me too! Yes, he is freaking awesome! Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Re: Re: Sher/Bruce Hey Sher, Wasn't Cook totally freaking awesome last night!!! I am so hoping he takes it all!! CaroSher Bauman <bofuswbcable (DOT) net> wrote: Bruce....I'll answer in the morning....gee whiz, AI is on! Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! ----- Original Message ----- .. CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.