Re: UIP

April 17, 2008

JO,you sound pretty upset Im sorry that you are hurtingI wish I could tell you , this is what is going to happen but I can't , no one can each person is different no one knows for sure what is going to happen from one day to the next IM sorry BRETTI had VATS and was told that the pulmonary dr doesn't need to see meanymore because there isn't anything they can do for me. I am on 3liter at rest and 4 at short distance (to the bathroom) My exertionreduces my SATS quickly. I am looking for someone who has an idea ofhow this will progress from here on. Any guesses are welcome. Theidea that we are all living in a fog is not proactive and there isalreay enough "I (we) just don't know" stuff out there. It would benice to have some "I think or What we have seen, or my experience withother here..." Trying to wade through all these emails to get to someidea of how people are progressing is near impossible and theredoesn't seem to be any other resource out there. Sorry I just wouldlike some answers even if they are not "fact" or apply to everyone orwhat else makes us all so afraid of saying "6 months" this stage ispretty far along or something. You are all encouraging and lovely but I need raw truth. Not just keepfighting. That's all good and well but I know that already. I needhelp figuring out what to expect and trying to help my family knowwhat to expect. Thank you and I'm sorry. brett bowserbrett@...

April 17, 2008

Hi Jo, I am very new to this site, but not to medicine. I want you to know, you have the right and more then that the need to see another Dr. I got sick in Sept. fired my PCP called my ins. to be sure I could do that, and found a GREAT PCP. At the hospital they sent in a Pulmo, very nice, but I asked for a second opinion and found my perfect match, Even If that Dr thought thinks there truly is nothing more he can do for you, to dismiss you in that way is unethical. I wish I knew more about you, but I will tell you this, both of my Dr's have said, "Don't you worry, we're in this together". That's how it should be............... I worked in a teaching hospital where I found some of the most compassionate and sometimes, brilliant Dr's. My PCP told me it saddened him, that he had to turn me over to anyone else, but to remember, he is there 24/7. Please let me know how you make out! Remember, this is your life is you

fight for all you want. I'll be sending lots of positive energy as well as love! TerryJO wrote: I had VATS and was told that the pulmonary dr doesn't need to see meanymore because there isn't anything they can do for me. I am on 3liter at rest and 4 at short distance (to the bathroom) My exertionreduces my SATS quickly. I am looking for someone who has an idea ofhow this will progress from here on. Any guesses are welcome. Theidea that we are all living in a fog is not proactive

and there isalreay enough "I (we) just don't know" stuff out there. It would benice to have some "I think or What we have seen, or my experience withother here..." Trying to wade through all these emails to get to someidea of how people are progressing is near impossible and theredoesn't seem to be any other resource out there. Sorry I just wouldlike some answers even if they are not "fact" or apply to everyone orwhat else makes us all so afraid of saying "6 months" this stage ispretty far along or something. You are all encouraging and lovely but I need raw truth. Not just keepfighting. That's all good and well but I know that already. I needhelp figuring out what to expect and trying to help my family knowwhat to expect. Thank you and I'm sorry.Terry Pennisi 11/07 IPF Nevada

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April 17, 2008

JO the raw truth is you will progressively get more sobor you will stabilizeonly god knows the path each of us are on and how fast we get thereI had VATS and was told that the pulmonary dr doesn't need to see meanymore because there isn't anything they can do for me. I am on 3liter at rest and 4 at short distance (to the bathroom) My exertionreduces my SATS quickly. I am looking for someone who has an idea ofhow this will progress from here on. Any guesses are welcome. Theidea that we are all living in a fog is not proactive and there isalreay enough "I (we) just don't know" stuff out there. It would benice to have some "I think or What we have seen, or my experience withother here..." Trying to wade through all these emails to get to someidea of how people are progressing is near impossible and theredoesn't seem to be any other resource out there. Sorry I just wouldlike some answers even if they are not "fact" or apply to everyone orwhat else makes us all so afraid of saying "6 months" this stage ispretty far along or something. You are all encouraging and lovely but I need raw truth. Not just keepfighting. That's all good and well but I know that already. I needhelp figuring out what to expect and trying to help my family knowwhat to expect. Thank you and I'm sorry. brett bowserbrett@...

April 17, 2008

Jo,

I'm sorry that you are going through this. We all look for answers and it is intensely frustrating when none are forthcoming. The raw (to use your word) truth is that there aren't any definitive answers. Not answers that apply to everyone. Each persons journey with this disease is different.

I am also use 3 liters at rest and 4 (maybe 5 sometimes) for exertion and 12 with a mask on the treadmill. I've been at this level for nearly 2 years and don't show signs of deteriorating. My doctor says I could stay this way indefinitely or I could start to progress tomorrow. No one knows.

My suggestion to you (take it for what it's worth) would be to get yourself to a new pulmonologist immediately. To be sent home and told, 'Sorry don't need to see you again, nothin I can do for you.' is pretty reprehensible. I don't know where you live but if you can get yourself to a university medical center with an interstitial lung disease dept, you'll be in much better, more knowledgable and probably more compassionate hands.

I think I understand what you mean when you say 'living in a fog is not proactive' but I've made peace with the fact that I truly don't know what will happen to me in the course of this disease. I will likely die from it at some point but on the other hand I could get hit by a car tomorrow when I walk out to get the mail. I am determined to be proactive, get the care I need and deserve and live the best life I can in spite of this ugly disease.

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

UIP

I had VATS and was told that the pulmonary dr doesn't need to see meanymore because there isn't anything they can do for me. I am on 3liter at rest and 4 at short distance (to the bathroom) My exertionreduces my SATS quickly. I am looking for someone who has an idea ofhow this will progress from here on. Any guesses are welcome. Theidea that we are all living in a fog is not proactive and there isalreay enough "I (we) just don't know" stuff out there. It would benice to have some "I think or What we have seen, or my experience withother here..." Trying to wade through all these emails to get to someidea of how people are progressing is near impossible and theredoesn't seem to be any other resource out there. Sorry I just wouldlike some answers even if they are not "fact" or apply to everyone orwhat else makes us all so afraid of saying "6 months" this stage ispretty far along or something.

You are all encouraging and lovely but I need raw truth. Not just keepfighting. That's all good and well but I know that already. I needhelp figuring out what to expect and trying to help my family knowwhat to expect. Thank you and I'm sorry.

April 17, 2008

Hi Jo, I don't think I can be much help to you but we had pretty much the same story. Go home, take cough medicine it's just the fibrosis. If you can go to the website of Jewish National Hospital in Denver they have an 800 lung line. I called them initially and they talked to me a long time. I've been told they are the "primier" pulmonology hospital in the country, but there are many that will do you just as well. Where do you live? This is a super place to just hang around too and keep reading. I've learned so much from this group. They even often sneak in some jokes and have a little lightness. This could be a real downer. I don't have the disease, my hubby does. I try to glean all the information I can from these veterans. Keep us informed what you find out. I'm sure others will answer you as well.

K Hubby ipf 2006 Illinois Beth wrote: Jo, I'm sorry that you are going through this. We all look for answers and it is intensely frustrating when none are forthcoming. The raw (to use your word) truth is that there aren't any definitive answers. Not answers that apply to everyone. Each persons journey with this disease is different. I am also use 3 liters at rest and 4

(maybe 5 sometimes) for exertion and 12 with a mask on the treadmill. I've been at this level for nearly 2 years and don't show signs of deteriorating. My doctor says I could stay this way indefinitely or I could start to progress tomorrow. No one knows. My suggestion to you (take it for what it's worth) would be to get yourself to a new pulmonologist immediately. To be sent home and told, 'Sorry don't need to see you again, nothin I can do for you.' is pretty reprehensible. I don't know where you live but if you can get yourself to a university medical center with an interstitial lung disease dept, you'll be in much better, more knowledgable and probably more compassionate hands. I think I understand what you mean when you say 'living in a fog is not proactive' but I've made peace with the fact that I truly don't know what will happen to me in the course of this disease. I will likely die from it at some point but on

the other hand I could get hit by a car tomorrow when I walk out to get the mail. I am determined to be proactive, get the care I need and deserve and live the best life I can in spite of this ugly disease. Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive UIP I had VATS and was told that the pulmonary dr doesn't need to see meanymore because there isn't anything they can do for me. I am on 3liter at rest and 4 at short distance (to the bathroom) My exertionreduces my

SATS quickly. I am looking for someone who has an idea ofhow this will progress from here on. Any guesses are welcome. Theidea that we are all living in a fog is not proactive and there isalreay enough "I (we) just don't know" stuff out there. It would benice to have some "I think or What we have seen, or my experience withother here..." Trying to wade through all these emails to get to someidea of how people are progressing is near impossible and theredoesn't seem to be any other resource out there. Sorry I just wouldlike some answers even if they are not "fact" or apply to everyone orwhat else makes us all so afraid of saying "6 months" this stage ispretty far along or something. You are all encouraging and lovely but I need raw truth. Not just keepfighting. That's all good and well but I know that already. I needhelp figuring out what to expect and trying to help my family knowwhat to expect. Thank you

and I'm sorry. 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.

April 17, 2008

JO...........you've received some good answers so far, but I know that that is not what you wanted to hear. For me.... It used to be that the worst aspect of this disease was the threat of impending death. So I took care of business....will, etc......that was 3 years ago. People would tell me to "get on with living", and "you ain't dead yet"..........all true. For the most part I told them to go to hell. I'm not proud of it. Once the initial fear subsided the worst part of this disease became the uncertainty. Virtually.........."well hell, am I going to die or not?" NOW, somehow I've gotten to a place in my head, I have no idea how, where each day is a reward. I believe the wellbutrin played a significant part, I also believe that any MD, whether they be pulmonologist or family practice, that DOES NOT recommend antidepressants ought to be barred from practice. It is still a struggle. I have a 16 year old daughter. We've talked this thing through

completely. She's come to her own place in her head.......yesterday we went and got her driver's license. BIG DEAL !! If I'm here for her graduation I'll be thankful.....same with when she gets married....or has a baby. I was afraid to plan anything......well, phooey.........I planted strawberry plants last fall and I intend to have berries this summer. I intend to shoot a moose in the fall....with the help of lots of friends and a truckful of oxygen tanks. It'll look like a circus.....and I could care less. You know, one can work up a defiance of sorts.......like, "bring it on". All that big talk said........if I get a lung infection....all bets are off. I'm back to square one. Only now I know it won't last. I'm sorry to have rambled on here, JO.........your email rang my bells. I can feel your frustration and uncertainty. I hope that you can find a way to "live" with it. It can be done.....When were you diagnosed? jim IPF 05 alaskaJO wrote: I had VATS and was told that the pulmonary dr doesn't need to see meanymore because there isn't anything they can do for me. I am on 3liter at rest and 4 at short distance (to the bathroom) My exertionreduces my SATS quickly. I am looking for someone who has an idea ofhow this will progress from here on. Any guesses are welcome. Theidea that we are all living in a fog is not proactive and there isalreay enough "I (we) just don't know" stuff out

there. It would benice to have some "I think or What we have seen, or my experience withother here..." Trying to wade through all these emails to get to someidea of how people are progressing is near impossible and theredoesn't seem to be any other resource out there. Sorry I just wouldlike some answers even if they are not "fact" or apply to everyone orwhat else makes us all so afraid of saying "6 months" this stage ispretty far along or something. You are all encouraging and lovely but I need raw truth. Not just keepfighting. That's all good and well but I know that already. I needhelp figuring out what to expect and trying to help my family knowwhat to expect. Thank you and I'm sorry.

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

April 17, 2008

Jim, What a wonderful attitude you have. I only wish Don could arrive at that point. I'm afraid to talk to him about "business" because it depresses him. Holy cow, how do you handle the horrible winters up there? We are planning on getting the heck out of dodge next winter to a warmer climate. k Illinois james wallman wrote: JO...........you've received some good answers so far, but I know that

that is not what you wanted to hear. For me.... It used to be that the worst aspect of this disease was the threat of impending death. So I took care of business....will, etc......that was 3 years ago. People would tell me to "get on with living", and "you ain't dead yet"..........all true. For the most part I told them to go to hell. I'm not proud of it. Once the initial fear subsided the worst part of this disease became the uncertainty. Virtually.........."well hell, am I going to die or not?" NOW, somehow I've gotten to a place in my head, I have no idea how, where each day is a reward. I believe the wellbutrin played a significant part, I also believe that any MD, whether they be pulmonologist or family practice, that DOES NOT recommend antidepressants ought to be barred from practice. It is still a struggle. I have a 16 year old daughter. We've talked this thing through completely. She's come to her own place in her

head.......yesterday we went and got her driver's license. BIG DEAL !! If I'm here for her graduation I'll be thankful.....same with when she gets married....or has a baby. I was afraid to plan anything......well, phooey.........I planted strawberry plants last fall and I intend to have berries this summer. I intend to shoot a moose in the fall....with the help of lots of friends and a truckful of oxygen tanks. It'll look like a circus.....and I could care less. You know, one can work up a defiance of sorts.......like, "bring it on". All that big talk said........if I get a lung infection....all bets are off. I'm back to square one. Only now I know it won't last. I'm sorry to have rambled on here, JO.........your email rang my bells. I can feel your frustration and uncertainty. I hope that you can find a way to "live" with it. It can be done.....When were you diagnosed? jim IPF

05 alaskaJO <jolethin> wrote: I had VATS and was told that the pulmonary dr doesn't need to see meanymore because there isn't anything they can do for me. I am on 3liter at rest and 4 at short distance (to the bathroom) My exertionreduces my SATS quickly. I am looking for someone who has an idea ofhow this will progress from here on. Any guesses are welcome. Theidea that we are all living in a fog is not proactive and there isalreay enough "I (we) just don't know" stuff out there. It would benice to have some "I think or What we have seen, or my experience withother here..." Trying to wade through all these emails to get to someidea of how people are progressing is near impossible and theredoesn't seem to be any other resource out there. Sorry I just wouldlike some answers even

if they are not "fact" or apply to everyone orwhat else makes us all so afraid of saying "6 months" this stage ispretty far along or something. You are all encouraging and lovely but I need raw truth. Not just keepfighting. That's all good and well but I know that already. I needhelp figuring out what to expect and trying to help my family knowwhat to expect. Thank you and I'm sorry. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. 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.

April 17, 2008

, Don will get there when he's ready. My point was that for 2 years my attitude sucked..And myself and everyone around me suffered. I only hope he realizes that you are in this with him. It is so easy to withdraw. I've been around enough death and dying to know that we all do it different..........and there is NO wrong way. Good luck to you. Horrible winters????? of what do you speak...??? :-) today is 35 degrees...lots of snow, sno-go trails are packed and smooth......easy ridin'....... jim alaska Kennelly wrote: Jim, What a wonderful attitude you have. I only wish Don could arrive at that point. I'm afraid to talk to him about "business" because it depresses him. Holy cow, how do you handle the horrible winters up there? We are planning on getting the heck out of dodge next winter to a warmer climate. k Illinois james wallman <james_wallman> wrote: JO...........you've received some good answers so far, but I know that that is not what you wanted to hear. For me.... It used to be that the worst aspect of this disease was the threat of impending death. So I took care of business....will, etc......that was 3

years ago. People would tell me to "get on with living", and "you ain't dead yet"..........all true. For the most part I told them to go to hell. I'm not proud of it. Once the initial fear subsided the worst part of this disease became the uncertainty. Virtually.........."well hell, am I going to die or not?" NOW, somehow I've gotten to a place in my head, I have no idea how, where each day is a reward. I believe the wellbutrin played a significant part, I also believe that any MD, whether they be pulmonologist or family practice, that DOES NOT recommend antidepressants ought to be barred from practice. It is still a struggle. I have a 16 year old daughter. We've talked this thing through completely. She's come to her own place in her head.......yesterday we went and got her driver's license. BIG DEAL !! If I'm here for her graduation I'll be thankful.....same with when she gets married....or has a baby. I was afraid to plan

anything......well, phooey.........I planted strawberry plants last fall and I intend to have berries this summer. I intend to shoot a moose in the fall....with the help of lots of friends and a truckful of oxygen tanks. It'll look like a circus.....and I could care less. You know, one can work up a defiance of sorts.......like, "bring it on". All that big talk said........if I get a lung infection....all bets are off. I'm back to square one. Only now I know it won't last. I'm sorry to have rambled on here, JO.........your email rang my bells. I can feel your frustration and uncertainty. I hope that you can find a way to "live" with it. It can be done.....When were you diagnosed? jim IPF 05 alaskaJO <jolethin> wrote: I had VATS and was

told that the pulmonary dr doesn't need to see meanymore because there isn't anything they can do for me. I am on 3liter at rest and 4 at short distance (to the bathroom) My exertionreduces my SATS quickly. I am looking for someone who has an idea ofhow this will progress from here on. Any guesses are welcome. Theidea that we are all living in a fog is not proactive and there isalreay enough "I (we) just don't know" stuff out there. It would benice to have some "I think or What we have seen, or my experience withother here..." Trying to wade through all these emails to get to someidea of how people are progressing is near impossible and theredoesn't seem to be any other resource out there. Sorry I just wouldlike some answers even if they are not "fact" or apply to everyone orwhat else makes us all so afraid of saying "6 months" this stage ispretty far along or something. You are all encouraging and lovely but I

need raw truth. Not just keepfighting. That's all good and well but I know that already. I needhelp figuring out what to expect and trying to help my family knowwhat to expect. Thank you and I'm sorry. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. 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.

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April 17, 2008

Are you crazy? Don just said he doesn't know how you do it with fibrosis. K Illinoisjames wallman wrote: , Don will get there when he's ready. My point was that for 2 years my attitude sucked..And myself and everyone around me suffered. I only hope he realizes that you are in this with him. It is so easy to withdraw. I've been around enough death and dying to know that we all do it different..........and there is NO wrong way. Good luck

to you. Horrible winters????? of what do you speak...??? :-) today is 35 degrees...lots of snow, sno-go trails are packed and smooth......easy ridin'....... jim alaska Kennelly <l_kennelly> wrote: Jim, What a wonderful attitude you have. I only wish Don could arrive at that point. I'm afraid to talk to him about "business" because it depresses him. Holy cow, how do you handle the horrible winters up there? We are planning on getting the heck out of dodge next winter to a warmer climate. k Illinois james wallman <james_wallman> wrote: JO...........you've received some good answers so far, but I know that that is not what you wanted to hear. For me.... It used to be that the worst aspect of this disease was the threat of impending death. So I took care of business....will, etc......that was 3 years ago. People would tell me to "get on with living", and "you ain't dead yet"..........all true. For the most part I told them to go to hell. I'm not proud of it. Once the initial fear subsided the worst part of this disease became the uncertainty. Virtually.........."well hell, am I going to die or not?" NOW, somehow I've gotten to a place in my head, I have no idea how, where each day is a reward. I believe the wellbutrin played a significant part, I also believe that any MD, whether they be pulmonologist or family practice, that DOES NOT recommend antidepressants ought to be barred from practice. It is still a struggle. I have a 16

year old daughter. We've talked this thing through completely. She's come to her own place in her head.......yesterday we went and got her driver's license. BIG DEAL !! If I'm here for her graduation I'll be thankful.....same with when she gets married....or has a baby. I was afraid to plan anything......well, phooey.........I planted strawberry plants last fall and I intend to have berries this summer. I intend to shoot a moose in the fall....with the help of lots of friends and a truckful of oxygen tanks. It'll look like a circus.....and I could care less. You know, one can work up a defiance of sorts.......like, "bring it on". All that big talk said........if I get a lung infection....all bets are off. I'm back to square one. Only now I know it won't last. I'm sorry to have rambled on here, JO.........your email rang my bells. I can feel your frustration and uncertainty. I hope that you can find a way to

"live" with it. It can be done.....When were you diagnosed? jim IPF 05 alaskaJO <jolethin> wrote: I had VATS and was told that the pulmonary dr doesn't need to see meanymore because there isn't anything they can do for me. I am on 3liter at rest and 4 at short distance (to the bathroom) My exertionreduces my SATS quickly. I am looking for someone who has an idea ofhow this will progress from here on. Any guesses are welcome. Theidea that we are all living in a fog is not proactive and there isalreay enough "I (we) just don't know" stuff out there. It would benice to have some "I think or What we have seen, or my experience withother here..." Trying to wade through all these emails to get to someidea of how people are progressing is near impossible and

theredoesn't seem to be any other resource out there. Sorry I just wouldlike some answers even if they are not "fact" or apply to everyone orwhat else makes us all so afraid of saying "6 months" this stage ispretty far along or something. You are all encouraging and lovely but I need raw truth. Not just keepfighting. That's all good and well but I know that already. I needhelp figuring out what to expect and trying to help my family knowwhat to expect. Thank you and I'm sorry. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. 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. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. 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.

April 17, 2008

Crazy? Probably...........however, once I get my wife or daughter to gas-up and start my machine I put on my backpack holding my O2 tank, put the hose in my mouth and all I have to do is sit down and hit the throttle. I am NOT reckless......but doing 60 over this smooth, miles long expanse of snow is one of life's finer things. RE the fibrosis......the hardest part is getting dressed, you know, sno pants, parka, etc......takes me forever. I know the purists would, and do, say "what about the noise and the stink?" All true !! Ain't it great?? jim Kennelly wrote: Are you crazy? Don just said he doesn't know how you do it with fibrosis. K Illinoisjames wallman <james_wallman> wrote: , Don will get there when he's ready. My point was that for 2 years my attitude sucked..And myself and everyone around me suffered. I only hope he realizes that you are in this with him. It is so easy to withdraw. I've been around enough death and dying to know that we all do it different..........and there is NO wrong way. Good luck to you. Horrible winters????? of what do you speak...??? :-) today is 35 degrees...lots of snow, sno-go trails are packed and smooth......easy ridin'....... jim

alaska Kennelly <l_kennelly> wrote: Jim, What a wonderful attitude you have. I only wish Don could arrive at that point. I'm afraid to talk to him about "business" because it depresses him. Holy cow, how do you handle the horrible winters up there? We are planning on getting the heck out of dodge next winter to a warmer climate. k Illinois james wallman <james_wallman> wrote: JO...........you've received some good answers so far, but I know that that is not what you wanted to hear. For me.... It used to be that the worst aspect of this disease was the threat

of impending death. So I took care of business....will, etc......that was 3 years ago. People would tell me to "get on with living", and "you ain't dead yet"..........all true. For the most part I told them to go to hell. I'm not proud of it. Once the initial fear subsided the worst part of this disease became the uncertainty. Virtually.........."well hell, am I going to die or not?" NOW, somehow I've gotten to a place in my head, I have no idea how, where each day is a reward. I believe the wellbutrin played a significant part, I also believe that any MD, whether they be pulmonologist or family practice, that DOES NOT recommend antidepressants ought to be barred from practice. It is still a struggle. I have a 16 year old daughter. We've talked this thing through completely. She's come to her own place in her head.......yesterday we went and got her driver's license. BIG DEAL !! If I'm here for her graduation I'll be thankful.....same

with when she gets married....or has a baby. I was afraid to plan anything......well, phooey.........I planted strawberry plants last fall and I intend to have berries this summer. I intend to shoot a moose in the fall....with the help of lots of friends and a truckful of oxygen tanks. It'll look like a circus.....and I could care less. You know, one can work up a defiance of sorts.......like, "bring it on". All that big talk said........if I get a lung infection....all bets are off. I'm back to square one. Only now I know it won't last. I'm sorry to have rambled on here, JO.........your email rang my bells. I can feel your frustration and uncertainty. I hope that you can find a way to "live" with it. It can be done.....When were you diagnosed? jim IPF 05 alaskaJO <jolethin> wrote: I had VATS and was told that the pulmonary dr doesn't need to see meanymore because there isn't anything they can do for me. I am on 3liter at rest and 4 at short distance (to the bathroom) My exertionreduces my SATS quickly. I am looking for someone who has an idea ofhow this will progress from here on. Any guesses are welcome. Theidea that we are all living in a fog is not proactive and there isalreay enough "I (we) just don't know" stuff out there. It would benice to have some "I think or What we have seen, or my experience withother here..." Trying to wade through all these emails to get to someidea of how people are progressing is near impossible and theredoesn't seem to be any other resource out there. Sorry I just wouldlike some answers even if they are not "fact" or apply to everyone orwhat else makes us all so afraid of saying "6 months" this stage ispretty far along

or something. You are all encouraging and lovely but I need raw truth. Not just keepfighting. That's all good and well but I know that already. I needhelp figuring out what to expect and trying to help my family knowwhat to expect. Thank you and I'm sorry. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. 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. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. 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.

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

April 17, 2008

Well, your doctor just did a nice appraisal of his own abilities and

skills in saying there was nothing " he " could do. However, a legitimate

medical professional can help you by monitoring things, by helping you

adjust, by helping you when you have a set back such as pneumonia or

anything that can happen, will see that you get checked regularly with

echocardiograms to try to watch for PH, will refer for clinical trials

or transplant if you desire. So, what he said was true only in so far as

it applies to his practice. Get another pulmonologist.

As to what we know, the best thing is just to observe the progression

among those here, but there is no such thing as a pattern. How does one

look at it? Well, let me give you how I evaluate where I am. First, I do

it by how I feel. Nothing complication, no qualifications, just a

non-defined " how do I feel. " Second, I do it by my oxygen requirements.

I've been to lunch with a forum member who was still getting some

quality in her life even though she was up to 10 lpm at rest and 15 lpm

on exertion. I observe the best of those at 5-8 lpm. So, if I was at 3-4

lpm as you are, I would say to myself that I'm further along than

someone at not on oxygen, but I've got a long way to go before I reach

the stages of some. So I guess I measure not in weeks or months or years

but in liters per minute to go. It's the only thing that I can

personally look at objectively on my own.

Now, raw truth. You're going to die and we don't know when and, in

reality, we don't know from what. If nothing else gets you it will

probably be PF. What can you do? Everything possible to keep it from

being something else like kidney failure or heart failure by taking care

of yourself and keeping your sats up. You can also protect yourself from

germs and infection and illness the best you can.

How do you plan? Well, what I did was plan the worst first. I did all

the legal paperwork. I decided what I wanted done when I died, what I

wanted done if incapacitated. I decided how I'd want to live if I was to

the point that life had little value left and I was near the end (for me

its hospice care). So, that taken care of, the only thing I knew to do

was focus on living. Death and incapacitation is taken care of. As far

as the living, I planned this year at its start and everything I

consider I think in terms of this being the last year I can do a lot of

things. So, I don't put anything off. When I near the end of this year,

I'll plan next year based on where I stand. At some point, years may

become too long to consider and I'll do half years or quarters. I hope

to repeat the exercise many times but I'm not putting anything off on

that chance. I've done a little bit as far as consideration of clinical

trials or future transplant, but I'm not letting those things consume me

or interfere with today.

No one can say six months or any period of time. I can say that people

on 3-4 lpm like you have been known to live a long time or a short time

and everywhere in between. It can progress rapidly or stabilize or

progress slowly. But, again, find some way to deal with the worst and

get it out of the way. Then just live in the short periods. Next year is

a complete blank in my plans. But, this year is filled with things I

want to get done. So, you might say I'm planning on the basis of 8

months right now. But I hope to plan another year when that 8 months is

about over.

>

> I had VATS and was told that the pulmonary dr doesn't need to see me

> anymore because there isn't anything they can do for me. I am on 3

> liter at rest and 4 at short distance (to the bathroom) My exertion

> reduces my SATS quickly. I am looking for someone who has an idea of

> how this will progress from here on. Any guesses are welcome. The

> idea that we are all living in a fog is not proactive and there is

> alreay enough " I (we) just don't know " stuff out there. It would be

> nice to have some " I think or What we have seen, or my experience with

> other here... " Trying to wade through all these emails to get to some

> idea of how people are progressing is near impossible and there

> doesn't seem to be any other resource out there. Sorry I just would

> like some answers even if they are not " fact " or apply to everyone or

> what else makes us all so afraid of saying " 6 months " this stage is

> pretty far along or something.

>

> You are all encouraging and lovely but I need raw truth. Not just keep

> fighting. That's all good and well but I know that already. I need

> help figuring out what to expect and trying to help my family know

> what to expect.

>

> Thank you and I'm sorry.

>

April 17, 2008

K/Jo

And my advice to you and anyone else is the same. If your doctor doesn't

provide all you need, rather than just a diagnosis, then get another

doctor.

> Jo,

> I'm sorry that you are going through this. We all look for answers and

it is intensely frustrating when none are forthcoming. The raw (to use

your word) truth is that there aren't any definitive answers. Not

answers that apply to everyone. Each persons journey with this disease

is different.

> I am also use 3 liters at rest and 4 (maybe 5 sometimes) for exertion

and 12 with a mask on the treadmill. I've been at this level for nearly

2 years and don't show signs of deteriorating. My doctor says I could

stay this way indefinitely or I could start to progress tomorrow. No one

knows.

> My suggestion to you (take it for what it's worth) would be to get

yourself to a new pulmonologist immediately. To be sent home and told,

'Sorry don't need to see you again, nothin I can do for you.' is pretty

reprehensible. I don't know where you live but if you can get yourself

to a university medical center with an interstitial lung disease dept,

you'll be in much better, more knowledgable and probably more

compassionate hands.

>

> I think I understand what you mean when you say 'living in a fog is

not proactive' but I've made peace with the fact that I truly don't know

what will happen to me in the course of this disease. I will likely die

from it at some point but on the other hand I could get hit by a car

tomorrow when I walk out to get the mail. I am determined to be

proactive, get the care I need and deserve and live the best life I can

in spite of this ugly disease.

>

> Beth

> Age 48 Fibrotic NSIP 06/06

>

> Change everything. Love and Forgive

>

> UIP