Guest guest Posted April 14, 2008 Report Share Posted April 14, 2008 K Strike two on the doctor. In my mind, two strikes and you're out. I'm serious. It really sounds like a doctor who proclaims you dead when diagnosed and cares nothing about how you live your life. Pulmonary rehab is of great use as is exercise. All these things, like oxygen, are designed to keep the rest of your body in the best possible shape. There is life with PF. It's not what we hoped for but it can be pretty good and certainly have some great moments. I will say this without a moment hesitation and that is the depression caused by the disease and inactivity and attitude can rob one more of life than the disease at the point he is today. I planned to live to be 100 and active and wealthy and healthy all the time. But, the reality is I probably will do more things with PF than I would have without because I'm focusing on it. And when my mobility is gone, then I'll still be focused on quality times with friends and family including my Air Family here. > > > > > > > > > > > > > > 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 14, 2008 Report Share Posted April 14, 2008 / Beth Seldom would I ever change a word of what Beth writes and I so depend on her to correct my misstatements, but...... The Word is LIVE, not survive. That't the problem with the doctor is that he's just thinking of surviving. Yes, rehab will help survival but more importantly it will help him live. It will be a boost in so many ways. I survived and existed too long so have become sensitive to any of us settling for that stage when we are all very much alive and can all truly LIVE if we dedicate ourselves to it. Some of us can't grab quite as much of life per day or week as others, but we can still find quality and value in our lives. > > > > > > > > > > > > > > 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 14, 2008 Report Share Posted April 14, 2008 Thank you for the wonderful words, both of you. Hopefully things are in the works. K Central Il.Bruce Moreland wrote: / BethSeldom would I ever change a word of what Beth writes and I sodepend on her to correct my misstatements, but......The Word is LIVE, not survive. That't the problem with the doctor isthat he's just thinking of surviving. Yes, rehab will help survival butmore importantly it will help him live. It will be a boost in so manyways. I survived and existed too long so have become sensitive to any ofus settling for that stage when we are all very much alive and can alltruly LIVE if we dedicate ourselves to it. Some of us can't grab quiteas much of life per day or week as others, but we can still find qualityand value in our lives.> > > > > > >> > > > > > > Sher,> > > > > > > I'm happy to hear the doctors have switched yourdiagnosis. 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 seenpatients> > > > > > with NSIP who have been "stable for decades." I mean I knowthat my> > > > > > experience may be different but anything that gives us hopeis> > > > > > helpful!> > > > > > > Have they switched your dx based on the behavior of thedisease or> > > > > > also on the ct scan results? NSIP is usually veryidentifiable by CT> > > > > > scan. To identify the type of NSIP (fibrotic, cellular ormixed) you> > > > > > would need a biopsy. But at this point it probably doesn'tmatter 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, UIP01/08, RHEUMATOID ARTHRITIS 03/08> > > > Mississippi> > > > ____________ _________ _________ _________ _________ __> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2008 Report Share Posted April 20, 2008 Ben was my student when I was teaching. He has come a long way, but has missed the second semester of help. I believe, just by watching, that I'm going to have a grandson struggle with reading. He is almost 3 and is not talking and doesn't sit still long enough to want to be read to, while his sister and cousins will sit for hours and be read to. LInda Z is also a reading specialist and knows what I'm talking about. i'm going upstairs soon to download the pics from my camera to put on the website with our lunch with Fay. We had such a good time. It was good for Don to meet him and talk - and talk they did. He says I did most of the talking. I don't think that is true. I got used to doing that when he lost his voice, so I might have. I'll have to ask . Don is such a stubborn old fart. He started Cymbalta and was told that at least for the first week he should take it at night because it might make him sleepy. Well, he decided that he takes too many meds at night so he took it this morning. Hence, he is zonked on the couch. Our oldest is suppose to come out and help get the lawn mower ready for the season. He is so hoping to be able to mow this year. Does anyone have any ideas for how he can mow with O2? The big tank strapped to his back doesn't work well. He LOVES to mow. I say "go for it sweete". I love this board because like you, it is becoming my socialization. I don't really like to shop (especially when I've gained weight) and yesterday was a good day with daughter in law and granddaughter, but I was looking forward to talking to you guys. K Central Il Sher Bauman wrote: Z...the pictures of Sara are so cute...a couple too dark to see much but her and the doll are adorable. The board IS my way of socializing too. I have realized over the past few years that my self-esteem was wrapped up in "what I did" and when I "couldn't do it" I felt less self-esteem/self worth. The board has given that back to me....by being appreciated (as we all are) and giving me an opportunity to help others (as we all have). I can still "do what I did" only on a different level. I think God has given me an opportunity to bloom where I'm planted (as we all can). How lucky for you , to have the skills to help a dyslexic child. You say "my". Are you meaning your own child? How much sweeter...that you can help your own. That's what Mama's do! >>>... How diplomatic can one be! OK, I get the message....thanks for the hint for STEP! I'll check it out ....so your typing isn't wasted on a lame brain! Thanks honey. >>>Vicky...My favorite is Aqua Allegoria...not heard of much, (by Guerlain). I cleaned house yesterday...even down to spraying the silk flowers w/cleaner! Looks so nice to get up to in the morning. I'm so glad you are feeling better! xoxo >>>>Caro...hey good for you getting the gym. I'm still working up to the treadmill. The walking sounds like a really good job too! Three cheers for you! Love ya all.............. Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 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...
Guest guest Posted April 23, 2008 Report Share Posted April 23, 2008 Sher, How is the surprise going. I think a hint is in order.. It sounds to me like you need a good brisk sit. You have done a lot lately..Take care f you Love and Prayers, PeggyIPF 2004, Florida"Worry looks around, Sorry looks back, Faith looks up." Quote Link to comment Share on other sites More sharing options...
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