Re: K

[Guest guest]

, When it is rainy here or just humid. I have a hard time breathing so I stay in the house with the AC going. I can't breathe in HEAT or COLD. I am such a wimp.. We loose power a lot so has installed a window unit in our bed room so I can go in there. It runs off of a generator. I will also be able to run my concentrator. This hateful disease takes some planning for all we do. I hardly go to Tampa anymore to visit my children, it is just to hard to gather up and load the unload.I do feel so sorry for you and all the caretakers. I tell I wouldn't put up with me most of the time..  LOL he never agrees with me.. good thing.. hee hee. I appreciate ALL the things he does and I an sure your hubby does too. Talk care of you.Love and Prayers, PeggyIPF  2004,  Florida"Worry looks around, Sorry looks back,  Faith looks up." I hope today wasn't too bad for you.  Today was terrible for Don.  It has rained all day. I still remember how you cheered me up when I first began.   This is a long and arduous battle. I thank you for making me smile and being there for me, like all of you are.   I don't know how I got through so many months of ipf without you all. KIllinoisTerry Pennisi <terrypennisi> wrote:My Buddy,Thanks for meking me laugh! I feel such a difference in you since you joined the group, that it makes me feel good!Say hi to Don.Love ya,Ter Kennelly <l_kennelly> wrote:I'm trying to get caught up on 3 days of nonattendance on the website.   I know it is at the bottom.  I sure don't know how to get it up under the current post.   I just figure some little computer fairy loves to baffle me and sticks it at the bottom.   You are great to help me solve this little puzzle but I think I'm computer dyslexic.   KI'm trying to play with icons and as you can see I messed this one up too.IllinoisTerry Pennisi <terrypennisi> wrote: Please scroll ALL the way to the bottom! You will see you signature more then once. I wrote you before, you never answered, so I'm not sure you got it, but the signature goes to the end, that means all the way to the bottom of all the back and forth replies. Just scroll to the end and you will see yours!I hope this helps, so let me know,Terry  Kennelly <l_kennelly> wrote:Whew, I just don't get it!!!!!!!!!!       Kennelly <l_kennelly> wrote:On email.  does it make a difference?Sher Bauman <bofuswbcable (DOT) net> wrote:...are you looking on the web or on your email??? Mama-Sher, age 69. IPF 3-06, OR. Don't fret about tomorrow, God is already there! Re: Re: KathieHey, I looked for tools/options/ compose.  I can't find that I want the signature. Kcentral IlKathie <goplen2xaol (DOT) com> wrote:> > > > > > > > >> > > > > > > > >> > > > > > > > > Thanks so much for posting these lovely photos> > > Kathie....it' s> > > > > easy> > > > > > > to> > > > > > > > > see the bond between 'Air Family' members ins't it!> > > > > > > > >> > > > > > > > > Could I ask something of you for when you have thetime & > > > > > > > > > inclination. ...could you tell us YOUR story if that> > doesn't> > > > make> > > > > you> > > > > > > > > re-type something you've already done!!> > > > > > > > >> > > > > > > > > I don't recall hearing your experience from DX to> > now....I'm> > > > > really> > > > > > > > > trying to fathom how everybody's experiences are so> > > different,> > > > > one> > > > > > > from> > > > > > > > > the other. How long have you been on O2..did theneed for> > it> > > > > creep> > > > > > > up on> > > > > > > > > you or was it a big change quite quickly. Did youget it> > as> > > > soon> > > > > as> > > > > > > you> > > > > > > > > needed it or was there a Lag time in anyonerealising that> > > > you'd> > > > > got> > > > > > > to> > > > > > > > > that stage?????> > > > > > > > >> > > > > > > > > From your Database file I see you're onPrednisone.. ..how> > > much> > > > > did> > > > > > > you> > > > > > > > > take at the start & how much are you on now....haveyou> > > taken> > > > it> > > > > all> > > > > > > the> > > > > > > > > way along? Do you think it has slowed yourprogression?> > Have> > > > you> > > > > got> > > > > > > > > Fibrotic NSIP , Mixed NSIP or Cellular NSIP???????Have> > you> > > > done> > > > > > > > > anything else that you think has helped slow your> > > progression?> > > > > If> > > > > > > you> > > > > > > > > have started to progress again why do you think thathas> > > > > happened???> > > > > > > > >> > > > > > > > > Sorry for the 1000 ?'s but I'm feeling really hungryfor> > > > > feedback> > > > > > > from> > > > > > > > > NSIP folk. I know Z' story & a fair idea of> > > > > Beth....WALLY> > > > > > > if> > > > > > > > > you see this I'd love to hear your story too! DIANAC's> > > > another> > > > > I> > > > > > > > > think.... have you shared your story ?????????> > > > > > > > >> > > > > > > > > ANY other NSIP folk lurking outthere??????? ?????????> > > > > > > > >> > > > > > > > > Cheers,> > > > > > > > >> > > > > > > > > In Oz> > > > > > > > >> > > > > > > > > IPF: Fibrotic NSIP/ UIP?????> > > > > > > > >> > > > > > > > > Reynauds'> > > > > > > > >> > > > > > > > > May 2007> > > > > > > > >> > > > > > > >> > > > > > >> > > > > >> > > > > >> > > > > >> > > > > >> > > > > >> > > > > >> > > > > > ------------ --------- --------- ---> > > > > > Like movies? Here's a limited-time offer: BlockbusterTotal> > Access> > > > for> > > > > one month at no cost.> > > > > >> > > > >> > > >> > >> >> >> >> >> >> >> >> ><http://smiley. smileycentral. com/download/ index.jhtml? partner=ZSzeb112 _Z\\> > SYYYYYYYYAU & utm_id=7920>> >>You rock. That's why Blockbuster' s offering you one month of Blockbuster Total Access, No Cost.You rock. That's why Blockbuster' s offering you one month of Blockbuster Total Access, No Cost.You rock. That's why Blockbuster' s offering you one month of Blockbuster Total Access, No Cost. KCentral IlHubby ipf- 2006As for me and my house, we will serve the Lord 14You rock. That's why Blockbuster' s offering you one month of Blockbuster Total Access, No Cost.You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost. KCentral IlHubby ipf- 2006As for me and my house, we will serve the Lord 14You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost. KCentral IlHubby ipf- 2006As for me and my house, we will serve the Lord 14You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost. KCentral IlHubby ipf- 2006As for me and my house, we will serve the Lord 14You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost.Terry Pennisi 11/07 IPF NevadaYou rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost. KCentral IlHubby ipf- 2006As for me and my house, we will serve the Lord 14You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost.Terry Pennisi 11/07 IPF NevadaYou rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost. KCentral IlHubby ipf- 2006As for me and my house, we will serve the Lord 14You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost.

[Guest guest]

,

I can't tell you whether or not Don should be taking the prednisone. I can tell you that it helped me significantly and that if they told me I should take it again I would not hesitate. But it's a very individual decision. I don't know of any good way that anyone can tell if predinsone will work for any individual with PF. It is a powerful drug and can have some very nasty side effects. I was fortunate in that I had a doctor who helped me aggressively manage those side effects from day one. From what you've shared it doesn't sound as though Don's getting that kind of medical support.

Whatever you and Don decide, please don't let him just stop taking the prednisone. He will have to come off of it gradually to allow his body to adjust. Stopping "cold turkey" is dangerous.

I wish there was something more I could do or say to change this for both of you....heck for me too for that matter!

Love,

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

Re: Re: Sher-NSIP

! Ok I liked your description of the different kinds but I still wonder if the treatment is all that different for each one of the different kinds. Does that make sense? It just seems that no matter what kind you have, the docs are scrambling to determine the best way to treat. Am I even in the ball park?

K

Illinois <gina.francis@ bigpond.com> wrote:

IPF stands for Idiopathic Pulmonary Fibrosis as opposed to Pulmonary Fibrosis (PF)...Idiopathic means UNKNOWN CAUSE....Joyce, Zena & others have PF secondary to their Auto-immune or Connective Tissue Diseases & therefore the CAUSE of their Fibrosis is KNOWN. Some people get PF as a result of Cancer treaments from eitherthe drugs used OR the radiation. Some people have the genetic version of PF & so on...their cause is KNOWN!

If you think of the term IPF as an UMBRELLA term then all sorts of TYPES of PF patterns shelter under that umbrella.... UIP, NSIP in all of its variations, HPF (Hypersensitivity PF), DIP etc etc etc

Now it's also true that many specialists in America uses IPF & UIP interchangeably. This confusion in terms does not exist in Australia.

We ALL have Pulmonary Fibrosis, some of us know why & many of us don't....hence IPF & PF!

The TYPE we have gives some pointers ot possible prognosis & treatment plans BUT it can be VERY hard to be totally accurate about which type we DO have. Unless your HRCT can AND your pathology sample ( from 3 diffeernt lung sites) VATS results are ALL in concurrence!

Hope this is a bit clearer than MUD!!!!!!

in Oz

IPF: Fibrotic NSIP/ UIP??????

May 2007

Reynauds'

> > > >> > > > 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> ____________ _________ _________ _________ _________ __>

[Guest guest]

Beth/

I sit here wondering what if I had Fibrotic NSIP and I think I probably

would have given prednisone a try, but, theory is easy as is

speculation. Only had that been my diagnosis would I have found out what

I would have done.

Now, one thing I do know is that if I did take prednisone I would be

very aware of the side effects and take every possible precaution

including my diet, doing everything possible to avoid exposure to germs

and reacting quickly at the least sign of anything wrong as I'd know my

immune system was weaker, and, in my case, seeing my counselor very

frequently at least until I adjusted and also when tailing off of it.

Even today, I sometimes think should I do it on the off chance that they

have my diagnosis wrong. However, I do somewhat play the odds and say to

myself, I don't think its right for me. But, I'm just as convinced based

on what you've said that taking it was absolutely right for you.

You mentioned the medical support and I know we've hammered this one a

bit, but, , Don has a right to caring and competent medical

support, to doctors who will help him manage and live with his disease

the best possible, to doctors who will listen and who will explain. You

need to support him in exercising his rights. Many of us have switched

doctors to get what we deserve. Unfortunately some doctors think their

job ended when they made the diagnosis.

> > > > >

> > > > > 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

> > ____________ _________ _________ _________ _________ __

> >

[Guest guest]

You are another one that I feel all kinds of love oozing from you. Thank you. Me thinks he has made up his mind. There isn''t anything that anyone could say to change it. He is that way. I will support him. I will plead to not let him cold turkey, but like I say, he is a stubborn farmer. thanks again. K Illinois Beth wrote: , I can't tell you whether or not Don should be taking the prednisone. I can tell you that it helped me significantly and that if they told me I should take it again I would not hesitate. But it's a very individual decision. I don't know of any good way that anyone can tell if predinsone will work for any individual with PF. It is a powerful drug and can have some very nasty side effects. I was fortunate in that I had a doctor who helped me aggressively manage those side effects from day one. From what you've shared it doesn't sound as though Don's getting that kind of medical support. Whatever you and Don decide, please don't let him just stop taking the prednisone. He will have to come off of it gradually to allow his body to adjust. Stopping "cold turkey" is dangerous. I wish there was something more I could do or say to change this for both of you....heck for me too for

that matter! Love, Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive Re: Re: Sher-NSIP ! Ok I liked your description of the different kinds but I still wonder if the treatment is all that different for each one of the different kinds. Does that make sense? It just seems that no matter what kind you have, the docs are scrambling to determine the best way to treat. Am I even in the ball park? K Illinois <gina.francis@ bigpond.com> wrote: IPF stands for Idiopathic Pulmonary Fibrosis as opposed to Pulmonary Fibrosis (PF)...Idiopathic means UNKNOWN CAUSE....Joyce, Zena & others have PF secondary to their Auto-immune or Connective Tissue Diseases & therefore the CAUSE of their Fibrosis is KNOWN. Some people get PF as a result of Cancer treaments from eitherthe drugs used OR the radiation. Some people have the genetic version of PF & so on...their cause is KNOWN! If you think of the term IPF as an UMBRELLA term then all sorts of TYPES of PF patterns shelter under that umbrella.... UIP, NSIP in all of its variations, HPF (Hypersensitivity PF), DIP etc etc etc Now it's also true that many specialists in America uses IPF & UIP interchangeably. This confusion in terms does not exist in Australia. We ALL have Pulmonary Fibrosis, some of us know why & many of us don't....hence IPF & PF! The TYPE we have gives some pointers ot possible prognosis & treatment plans BUT it can be VERY hard to be totally accurate about which type we DO have. Unless your HRCT can AND your pathology sample ( from 3 diffeernt lung sites) VATS results are ALL in concurrence! Hope this is a bit clearer than MUD!!!!!! in Oz IPF: Fibrotic NSIP/ UIP?????? May 2007 Reynauds' > > > >> > > > 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> ____________ _________ _________ _________ _________ __>

[Guest guest]

Oh , I just want to tell you when I had had it with prednisone I dropped down from 60mg to 40 one Fri. am, I told & what I had done.. Just to let them it was not worth the quality of life I was feeling. That night we were spending the night at my son's house. I woke up about 1 am.. my stomach had such sharp pain, well I spent quite a while in the bathroom thinking I had been poisoned. I laid on the couch so as not to wake . I began projectile puking. Thank heavens he has hard wood floors. So I spent the most miserable night of my sick life. freezing. My son called the next AM, she called Shands and was told to give me 60 mg and if not better within 3 hours get to the hospital. I Have to add the leg and joint pain were so bad I couldn't walk. couldn't stand. My son had to carry me to the bathroom. I cried and moaned for hours. When the prednisone kicked in, I slept.  NOW all that just to give you a little of what a strong hold it has on you. It did take me over a yearto come off of it. That was just one incident and my Dr did tell me it is as bad as coming off heroin. SLOW is the way to do it without hurting yourself.  God Bless you all through this rough time. It will get better. Life is good.  Love and Prayers, PeggyIPF  2004,  Florida"Worry looks around, Sorry looks back,  Faith looks up." You are another one that I feel all kinds of love oozing from you.  Thank you.  Me thinks he has made up his mind.   There isn''t anything that anyone could say to change it.  He is that way.  I will support him.   I will plead to not let him cold turkey, but like I say, he is a stubborn farmer. thanks again. KIllinois Beth <mbmurtha> wrote:,I can't tell you whether or not Don should be taking the prednisone. I can tell you that it helped me significantly and that if they told me I should take it again I would not hesitate. But it's a very individual decision. I don't know of any good way that anyone can tell if predinsone will work for any individual with PF. It is a powerful drug and can have some very nasty side effects. I was fortunate in that I had a doctor who helped me aggressively manage those side effects from day one. From what you've shared it doesn't sound as though Don's getting that kind of medical support.Whatever you and Don decide, please don't let him just stop taking the prednisone. He will have to come off of it gradually to allow his body to adjust. Stopping "cold turkey" is dangerous.I wish there was something more I could do or say to change this for both of you....heck for me too for that matter!Love, Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive       Re: Re: Sher-NSIP! Ok I liked your description of the different kinds but I still wonder if the treatment is all that different for each one of the different kinds.  Does that make sense?   It just seems that no matter what kind you have, the docs are scrambling to determine the best way to treat.  Am I even in the ball park? KIllinois <gina.francis@ bigpond.com> wrote:IPF stands for Idiopathic Pulmonary Fibrosis  as opposed to Pulmonary Fibrosis (PF)...Idiopathic means UNKNOWN CAUSE....Joyce, Zena & others have PF secondary to their Auto-immune or Connective Tissue Diseases & therefore the CAUSE of their Fibrosis is KNOWN. Some people get PF as a result of Cancer treaments from eitherthe drugs used OR the radiation. Some people have the genetic version of PF & so on...their cause is KNOWN!If you think of the term IPF as an UMBRELLA term then all sorts of TYPES of PF patterns shelter under  that umbrella.... UIP, NSIP in all of its variations, HPF (Hypersensitivity PF), DIP etc etc etcNow it's also true that many specialists in America uses IPF & UIP interchangeably. This confusion in terms does not exist in Australia.We ALL have Pulmonary Fibrosis, some of us know why & many of us don't....hence IPF & PF!The TYPE we have gives some pointers ot possible prognosis & treatment plans BUT it can be VERY hard to be totally accurate about which type we DO have. Unless your HRCT can AND your pathology sample ( from 3 diffeernt lung sites) VATS results are ALL in concurrence!Hope this is a bit clearer than MUD!!!!!! in OzIPF: Fibrotic NSIP/ UIP??????May 2007Reynauds'  > > > >> > > > 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> ____________ _________ _________ _________ _________ __>

[Guest guest]

Peggy/ K. A light bulb moment...Don...vomiting...freezing....

Could he already not be taking prednisone????

Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there!

Re: Re: Sher-NSIP

! Ok I liked your description of the different kinds but I still wonder if the treatment is all that different for each one of the different kinds. Does that make sense? It just seems that no matter what kind you have, the docs are scrambling to determine the best way to treat. Am I even in the ball park?

K

Illinois <gina.francis@ bigpond.com> wrote:

IPF stands for Idiopathic Pulmonary Fibrosis as opposed to Pulmonary Fibrosis (PF)...Idiopathic means UNKNOWN CAUSE....Joyce, Zena & others have PF secondary to their Auto-immune or Connective Tissue Diseases & therefore the CAUSE of their Fibrosis is KNOWN. Some people get PF as a result of Cancer treaments from eitherthe drugs used OR the radiation. Some people have the genetic version of PF & so on...their cause is KNOWN!

If you think of the term IPF as an UMBRELLA term then all sorts of TYPES of PF patterns shelter under that umbrella.... UIP, NSIP in all of its variations, HPF (Hypersensitivity PF), DIP etc etc etc

Now it's also true that many specialists in America uses IPF & UIP interchangeably. This confusion in terms does not exist in Australia.

We ALL have Pulmonary Fibrosis, some of us know why & many of us don't....hence IPF & PF!

The TYPE we have gives some pointers ot possible prognosis & treatment plans BUT it can be VERY hard to be totally accurate about which type we DO have. Unless your HRCT can AND your pathology sample ( from 3 diffeernt lung sites) VATS results are ALL in concurrence!

Hope this is a bit clearer than MUD!!!!!!

in Oz

IPF: Fibrotic NSIP/ UIP??????

May 2007

Reynauds'

> > > >> > > > 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> ____________ _________ _________ _________ _________ __>

[Guest guest]

Sher

Omg your light is on bright. My money is on him having at the very least

skipped a time or two, whether a conscious decision on his part or not.

> > > > >

> > > > > 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

> > ____________ _________ _________ _________ _________ __

> >

[Guest guest]

That's an interesting thought, hadn't even occurred to me.

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

Re: K

SherOmg your light is on bright. My money is on him having at the very leastskipped a time or two, whether a conscious decision on his part or not.> > > > >> > > > > 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 know thatmy> > >

> 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 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> > ____________ _________ _________ _________ _________ __> >

[Guest guest]

I made it back here. I have been working on a kite festival that was last weekend here in Decatur. I spent so much time on that I did not want to sit here and go thru mail on this site. Glad to hear Don is doing well, how about You?? This map idea is a good one. How did Don do in rehab?

Re: P

If you come for it, and the weather is great let us know. Monday, Wednesday and Friday's are Don's rehab in the afternoon. He is not looking forward to doing this but he knows it is necessary. It zapped him for the weekend and he only rode the exercise bike for 15 minutes on Friday.

We had so much fun meeting Fay (which by the way he hasn't posted lately) it will be fun meeting you.

K

Central Il

Hubby ipf- 2006

As for me and my house, we will serve the Lord

14

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[Guest guest]

Saturday May 3 to Saturday May 10. Thank you for your support and prayers. You know I think of Don and yourself often.

Steve59 from WA IPF 2006 Parkinsons 2008

Reply-To: Breathe-Support To: Breathe-Support Subject: Re: Board up/downs todayDate: Thu, 1 May 2008 20:41:02 -0700 (PDT)

Oh ,

What a bummer. As if things weren't bad enough! I'm so sorry. It seems like life has its way of kicking us when we are down. I'm already praying for you. I'm envious of your trip. When are you leaving? Give me the dates of departure and return and I'll be praying for you the entire time.

LInda k

IllinoisSTEPHEN R WILSON <svwilsonmsn> wrote:

Sher, Bruce, Beth, K, Kathie, Joy, Joyce and all interested.

The board seems to have raised more questions today than I can grasp, so I'll add my own. Saw my Tacoma pulmonologist today. back on imuran my sats seem to have stabilized and pursed lip breathing some one on this board and my oximeter seems to help me control them. However I had a fever and my shakes/tremors were noticeably worse. He called my pcp and I was able to slip in late this afternoon and have sinus, ear, and throat infections. Strong antibiotics prescribed of course and even though I had seen my pcp just 2 weeks ago she also knew the shaking was worse so between the 2 doctors I now also have a clinical daignosis of Parkinson, and on a full course of drugs for that. The pcp was concerned about our cruise but I told her I was going hell or high water. I've been given some pre surgery type drugs so I can sleep again and be able(concious) to drive my three wheeler and click a camera. The levadopa should control the Parkinsons in a couple days. So life is still basically good compared to the alternative. We all have to try to keep ourselves and air family up.

Steve59 from WA IPF 2006 Parkinsons 2008

K

Central Il

Hubby ipf- 2006

As for me and my house, we will serve the Lord

14

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[Guest guest]

Yep, it works for Don too. He has it in his pocket most of the time. Thanks girl KSher Bauman wrote: I'll jump in here for the site, K....I'm looking at it here at home. www.portablenebs.com/tripleoximeter It's the yellow one that pops right up.... Works ok for me...I have it checked every time I'm at rehab or drs. 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

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