Re: Re: Don

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I finally got a little nasty with the receptionist and got some action. They said the question will be dealt with by the end of the day. Yep, the ENT was the perscribing doc. It has really helped his voicelessness and his cough. Wheeeeeee! The warm blankets were wonderful. The nurse at rehab suggested we get some sole shoe warmers that hunters use. They were great too. The bottoms of his feet were toasty but the tops were cold. I only have 540 more emails to go. K Central IlSher Bauman wrote: K....keep calling Dr. ask for his assistant...call the pharmacy and ask there if this is a side effect to Nexium...Is it the ENT Dr who Rx Nexium???Isn't it maddening when you can't get a response from Dr office?! Warm blankets out of the dryer are nice for him. Did you try that? We're cold here in Oregon today too........ Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Re: joyce - good luck May, How sweet of you to remember. I am nervous, even a little scared....o.k. a lot scared! I have to be ready at 9:00 a.m. Monday, but they will call me when they have my room ready. Don't know when surgeries, etc. are going to be. They have to get my blood at the right levels before they can do anythng. That means lots of sticks, you know. I have not been sleeping well. Keep playing every scenerio over in my head. I am enjoying hearing about the wedding. It is such a special time. Enjoy! Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16>> > joyce> wishing you the best of luck for the 14th.> i will be crossing my fingers and praying > that it all goes smoothly without incident.> > may> K Central Il Hubby ipf- 2006 As for me

and my house, we will serve the Lord 14 between 0000-00-00 and 9999-99-99 K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 between 0000-00-00 and 9999-99-99 K Central Il Hubby ipf- 2006 As for me and my house, we will

serve the Lord 14

between 0000-00-00 and 9999-99-99

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i pretty much tell him what I'm reading. I haven't tonight because he is so darn depressed. He trusts you guys too, however he said tonight "The people you talk to are success stories" I know you guys are here for me. You are about all I do have that really understands. The boys are as panicky as I am. Bruce, I won't object to what ever he decides. I know he isn't as bad as he is going to get but he came from being mr. macho man. It scares me a little bit because his heart rate is pretty high. It was at times over 100 this morning. K Illinois Beth wrote: , I think by 'tailing off' Bruce is referring to the process of weaning off of the prednisone. It has to be very gradual to give his body a chance to adjust. Remember that prednisone is a hormone manufactured normally in all our bodies. While someone is on high doses, their body ceases producing it because it's being provided artificially. By weaning gradually you're giving his body a chance to begin making it again. It takes time. It took me 5 months to wean down from a high of 100mg a day to 0. Some will tell you that's fast but I tolerated it well. There have been folks here who've taken a year or more to wean

off. As Bruce said the side effects from weaning can be as severe or worse than just being on. However they are temporary. I had pretty horrendous muscle and joint pain while weaning but it gradually got better. I know this must be so discouraging for him (and you too). Remember we're here to support and help not tell you what to do. This is all go ugly and difficult. Choices and decisions everywhere you look and no clear answers! Just remember we're here for you anytime you need us. Bruce and have given some brilliant information and explanation. Perhaps you want to print some of it out and share with Don? Or are you already doing that? Beth Age 48

Fibrotic NSIP 06/06 Change everything. Love and Forgive Re: Re: gina Tell me about "tailing off". I've never heard of it. K IllinoisBruce Moreland <brucemoreland@ gmail.com> wrote: /For someone who can be so Scilly she can just reach back and haveperiods of sheer brilliance. Oh, I have to refer to her as Doctor Scillyfrom now on. DS from BWBB.It's got to be difficult to hear him talk about wanting off theprednisone and wanting to die. Now, the problem is figuring out whetherits a depressive current state saying that or

his real thoughts. I knowmany won't do it, but psychiatric help and counseling really are calledfor in such situations. There are medications that can offset some ofthe effects of prednisone on moods. Thats where the psychiatrist comesin. As to the counseling, its a way of one finding out their truefeelings versus the moment. I had a long period before PF when I wantedto die. But, today I'm living every way I can. Just let me assure youthat what he's feeling deep inside right now in his state may be scarierto him than death is.He has to decide on the prednisone but needs to be in the right state ofmind when he does. However, he needs you to support whatever he decidesand not just in words, but spirit. Would you want him to hold on tosomething that is feeling worse than death just because he thought youfelt he must? Maybe the doctor can provide him medication to help offsetit if he chooses. If not, maybe off of

prednisone he'll decide he wantsto live, not die. Do understand tailing off can be worse than getting onor being on so be prepared.I can't imagine being the spouse or the caretaker. I have no idea how Iwould react. I don't think he is close to death from what I've read orreally wants to die but he just doesn't want to hurt physically andemotionally like he does today any longer. The worst physical pain I'veever felt was when the anesthesia wore off too quickly after my VATS andI experienced things I never should have. However, even that pain didn'tmatch the emotional pain I previously felt.One last thing. One way to make him feel a little more alive is to makea concentrated effort to spend some time treating him like a husband,father, friend....if your leg hurts, ask him to massage it. Make himfeel like he still serves a purpose. Share things that took place duringthe day but have nothing to do with the

disease. Watch a favorite movie.Do anything that at least briefly makes him feel like more than apatient. He has in some ways become his disease and all that includes.You know he's still much more, but does he?> > > > > >> > > > > > Sher,> > > > > > I'm happy to hear the doctors have switched your diagnosis.NSIP> > > > > is definitely preferable to IPF, the life expectancy is muchlonger> > > > > and as a bonus, it does not always progress. As a matter offact,> > > > > 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 knowthat 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 ormixed)> > > 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 putyourself> > > > > through that. I don't regret my biopsy but I totally get whyyou've> > > > > chosen not to go down that road.> > > > > > In the meantime, celebrate stability!! Stable is my happyword!!> > > > > > 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> > > ____________ _________ _________ _________ _________ __> > >