Re: Glad to find this group

January 3, 2008

Hi Todd, Welcome aboard. This is a great place for learnin..... You may want to go through old posts and look at the home page where there are all kinds of helpful links and articles regarding pulmonary fibrosis. We also have a data base if you are so inclined to give us your mailing information and phone numbers. We also have a medication data base, etc. etc. Or if if you just want to ask questions or vent, this is the place to be. We are fortunate to have people from Alaska, Australia, UK (Scotland and England), Africa, India, and many states across the US of A. My name is Leanne and I'm co moderator with Joyce Dalton. The board was started over two years ago and is going strong. (unfortunately or fortunately depending on how you look at it) I was diagnosed coming up on five years ago (1-16-03 happy anniversary to me...) and was

listed for a single lung transplant 10-12-07. I am 49 years old. There are a few other people patiently or impatiently waiting for a lung transplant. The only known cure at this point. I also am very fortunate to work at the Pulmonary Fibrosis Foundation so if you are looking for more speciifc information you can always contact me at work . This goes for anyone on the board. We also have a great handbook and if anyone is interested in getting that, just send your mailing information to: ls_pulmonaryfibrosis@.... Anyway, sorry you have to be here. I hope you get what you are looking for with this wonderful group of folks. We do try to sign off with our diagnosis and pertinent information so we can keep each other straight. Leanne uip 1/03 Illinois listed for single lung transplant 10-12-07Todd Miles wrote: Just been diagnosed with IPF. Frustrating thing is I am otherwise healthy, 46 yr old (past) runner, never smoked.I have a lung biopsy coming up to confirm what my lung specialist is certain of. Is there anything I should ask?Based on a confirmation my lung specialist is going to set up an appt at Duke for getting on the list. Anything I should expect/ask about

this?Thanks so much.-Todd

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

January 3, 2008

Todd...welcome to our group. We continue to grow and it could be under better circumstances.

I won't respond to your questions, I'll leave that to those more in the know.

I opt not to have any bios. My age (69) and other major health problems doesn't make it appealing to me. There is no cure anyway....and no treatment.

You'll be reading other posts soon.

Hang in there with us.

Mama-Sher, ild 3-06, OR.Don't fret about tomorrow, God is already there!

Glad to find this group

Just been diagnosed with IPF. Frustrating thing is I am otherwise healthy, 46 yr old (past) runner, never smoked.I have a lung biopsy coming up to confirm what my lung specialist is certain of. Is there anything I should ask?Based on a confirmation my lung specialist is going to set up an appt at Duke for getting on the list. Anything I should expect/ask about this?Thanks so much.-Todd

January 3, 2008

Hi Todd and welcome to our corner of the internet. You have found what I think is the most amazing group of people I've ever had the privilege of being in contact with.

Are you in NC? I'm a new resident of Durham and am a patient of Dr. Lake on at Duke. So far I'm very happy with the care I'm getting. So far I'm still "too healthy" to be listed for transplant but I am open to that eventually if it becomes necessary. I had an open lung biopsy in June of 06. They initially thought I had IPF but that diagnosis was refined to Fibrotic NSIP (non specific interstitial pneumonitis) I was on prednisone for months but have now been off of it entirely for nearly a year.

Again, welcome and feel free to ask whatever questions you can think of!

Beth in NC Fibrotic NSIP 06/06

Glad to find this group

Just been diagnosed with IPF. Frustrating thing is I am otherwise healthy, 46 yr old (past) runner, never smoked.I have a lung biopsy coming up to confirm what my lung specialist is certain of. Is there anything I should ask?Based on a confirmation my lung specialist is going to set up an appt at Duke for getting on the list. Anything I should expect/ask about this?Thanks so much.-Todd

January 3, 2008

:

While I may have at some point warned of a crazy Aussie on the board,

I'm sure I've never identified one in particular.

> >

> > Just been diagnosed with IPF. Frustrating thing is I am otherwise

> > healthy, 46 yr old (past) runner, never smoked.

> >

> > I have a lung biopsy coming up to confirm what my lung specialist

is

> > certain of. Is there anything I should ask?

> >

> > Based on a confirmation my lung specialist is going to set up an

appt

> > at Duke for getting on the list. Anything I should expect/ask

about

> > this?

> >

> > Thanks so much.

> >

> > -Todd

> >

>

January 3, 2008

Did I say ANYTHING BWBB......??????

SGIO

PS nothing like getting in FIRST!!!!!> > >> > > Just been diagnosed with IPF. Frustrating thing is I am otherwise> > > healthy, 46 yr old (past) runner, never smoked.> > >> > > I have a lung biopsy coming up to confirm what my lung specialist > is> > > certain of. Is there anything I should ask?> > >> > > Based on a confirmation my lung specialist is going to set up an > appt> > > at Duke for getting on the list. Anything I should expect/ask > about> > > this?> > >> > > Thanks so much.> > >> > > -Todd> > >> >>

January 3, 2008

I am not sure what VATS is. I am pretty new to this so I have not been

monitoring my O2. Not on O2 either

My pathologist wants to investigate if a steriod will be affective

against my condition and to look for any other possibiliites.

Will remove my signature as well. Thanks

> Is your biopsy being done through VATS? If so, several of us have had

> it and can fill you in on our experiences.

>

> Now, why are you having the biopsy? What information will you gather

> and how will it affect what you do afterwards? For me the answer was

> to verify IPF because my decision was if it was IPF I would not take

> prednisone, but had it been certain others I would have considered

> trying.

>

> Are you on oxygen now? How are your sats? Are you checking them

> regularly? Low oxygen could cause headaches but actually too much

> could as well. However, generally the type headaches you describe

> don't sound like they are related to PF. Now one possible connection

> is if oxygen shortages are impacting your sleep. I would want to find

> out about the headaches and a neurologist might be a place to start.

> I'm not so sure I'd proceed with an invasive surgery with unexplained

> daily headaches.

>

> As to 48 hours for even a VATS, could be, but not my experience. I

> had mine on a Wednesday, was expected to get out of hospital on

> Friday or Saturday. Actually got out on Sunday.

>

> One more thing. All yahoo and all yahoo boards are spidered by people

> looking for names, numbers, anything sellable. I would not include

> personal phone numbers in my signature. However, I just wanted to be

> sure you knew that its just like posting them on a web page.

>

> >

> > I actually live in ton SC. I have a friend in my church

> that is part

> > of Mercy Flights that provides free air travel at any time for

> transplant

> > recipients.

> >

> > I currently have no medications prescribed.

> >

> > I have a question which is related to my current diagnosis. I have

> > headaches every day starting in the afternoon that last the rest of

> the day.

> > My lung specialist had no theories and I have not found any link to

> IPF.

> > Has anyone experienced these?

> >

> > My lung biopsy is next week. It looks like I will be out of it for

> 48 hours.

> > My pathologist was pretty certain that it is IPF after reviewing my

> tests

> > but wants to rule anything else out. He also indicated that I have

> perhaps

> > the best lung specialist in the area.

> >

> > Todd Miles, (h) ©

> >

> > _____

> >

> > From: Breathe-Support

> > [mailto:Breathe-Support ] On Behalf Of Beth

> > Sent: Thursday, January 03, 2008 4:05 PM

> > To: Breathe-Support

> > Subject: Re: Glad to find this group

> >

> > Hi Todd and welcome to our corner of the internet. You have found

> what I

> > think is the most amazing group of people I've ever had the

> privilege of

> > being in contact with.

> >

> > Are you in NC? I'm a new resident of Durham and am a patient of

> Dr. Lake

> > on at Duke. So far I'm very happy with the care I'm

> getting. So far

> > I'm still " too healthy " to be listed for transplant but I am open

> to that

> > eventually if it becomes necessary. I had an open lung biopsy in

> June of

> > 06. They initially thought I had IPF but that diagnosis was

> refined to

> > Fibrotic NSIP (non specific interstitial pneumonitis) I was on

> prednisone

> > for months but have now been off of it entirely for nearly a year.

> >

> > Again, welcome and feel free to ask whatever questions you can

> think of!

> >

> > Beth in NC Fibrotic NSIP 06/06

> >

> > Glad to find this group

> >

> > Just been diagnosed with IPF. Frustrating thing is I am otherwise

> > healthy, 46 yr old (past) runner, never smoked.

> >

> > I have a lung biopsy coming up to confirm what my lung specialist

> is

> > certain of. Is there anything I should ask?

> >

> > Based on a confirmation my lung specialist is going to set up an

> appt

> > at Duke for getting on the list. Anything I should expect/ask about

> > this?

> >

> > Thanks so much.

> >

> > -Todd

> >

>

January 3, 2008

Todd, Your signature, state are fine and safe as far as this group goes. I have been here two years and never had a problem. You'll notice how we sigh off. Welcome to our group. I know you'll be glad you are here. I'll be praying for you and that they have made a misdiagnosis. God Bless you. Love and Prayers, Peggy ipf 6/04 Florida"Worry looks around, Sorry looks back, Faith looks up." I am not sure what VATS is. I am pretty new to this so I have not beenmonitoring my O2. Not on O2 eitherMy pathologist wants to investigate if a steriod will be affectiveagainst my condition and to look for any other possibiliites.Will remove my signature as well. ThanksOn 1/3/08, Bruce Moreland <brucemorelandgmail> wrote:> Is your biopsy being done through VATS? If so, several of us have had> it and can fill you in on our experiences.>> Now, why are you having the biopsy? What information will you gather> and how will it affect what you do afterwards? For me the answer was> to verify IPF because my decision was if it was IPF I would not take> prednisone, but had it been certain others I would have considered> trying.>> Are you on oxygen now? How are your sats? Are you checking them> regularly? Low oxygen could cause headaches but actually too much> could as well. However, generally the type headaches you describe> don't sound like they are related to PF. Now one possible connection> is if oxygen shortages are impacting your sleep. I would want to find> out about the headaches and a neurologist might be a place to start.> I'm not so sure I'd proceed with an invasive surgery with unexplained> daily headaches.>> As to 48 hours for even a VATS, could be, but not my experience. I> had mine on a Wednesday, was expected to get out of hospital on> Friday or Saturday. Actually got out on Sunday.>> One more thing. All yahoo and all yahoo boards are spidered by people> looking for names, numbers, anything sellable. I would not include> personal phone numbers in my signature. However, I just wanted to be> sure you knew that its just like posting them on a web page.>> > >> > I actually live in ton SC. I have a friend in my church> that is part> > of Mercy Flights that provides free air travel at any time for> transplant> > recipients.> >> >> >> > I currently have no medications prescribed.> >> >> >> > I have a question which is related to my current diagnosis. I have> > headaches every day starting in the afternoon that last the rest of> the day.> > My lung specialist had no theories and I have not found any link to> IPF.> > Has anyone experienced these?> >> >> >> > My lung biopsy is next week. It looks like I will be out of it for> 48 hours.> > My pathologist was pretty certain that it is IPF after reviewing my> tests> > but wants to rule anything else out. He also indicated that I have> perhaps> > the best lung specialist in the area.> >> >> >> > Todd Miles, (h) © > >> >> >> > _____> >> > From: Breathe-Support > > [mailto:Breathe-Support ] On Behalf Of Beth> > Sent: Thursday, January 03, 2008 4:05 PM> > To: Breathe-Support > > Subject: Re: Glad to find this group> >> >> >> > Hi Todd and welcome to our corner of the internet. You have found> what I> > think is the most amazing group of people I've ever had the> privilege of> > being in contact with.> >> > Are you in NC? I'm a new resident of Durham and am a patient of> Dr. Lake> > on at Duke. So far I'm very happy with the care I'm> getting. So far> > I'm still "too healthy" to be listed for transplant but I am open> to that> > eventually if it becomes necessary. I had an open lung biopsy in> June of> > 06. They initially thought I had IPF but that diagnosis was> refined to> > Fibrotic NSIP (non specific interstitial pneumonitis) I was on> prednisone> > for months but have now been off of it entirely for nearly a year.> >> >> >> > Again, welcome and feel free to ask whatever questions you can> think of!> >> >> > Beth in NC Fibrotic NSIP 06/06> >> >> >> >> >> >> >> > Glad to find this group> >> > Just been diagnosed with IPF. Frustrating thing is I am otherwise> > healthy, 46 yr old (past) runner, never smoked.> >> > I have a lung biopsy coming up to confirm what my lung specialist> is> > certain of. Is there anything I should ask?> >> > Based on a confirmation my lung specialist is going to set up an> appt> > at Duke for getting on the list. Anything I should expect/ask about> > this?> >> > Thanks so much.> >> > -Todd> >>>>

January 3, 2008

Well, we like a signature knowing who you are and your location and

diagnosis although I can't remember to put mine most of the time.

Now, I know I'm asking some questions you can't answer, but they are

ones I would want to know before I'd submit to surgery.

VATS is Video Assisted Thorocoscopic Surgery where they do the biopsy

with a camera and laparoscopically. They cut three small holes and

then leave a tube in one for you to drain after. Two are along the

side of your ribs and one on your chest(mine is about an inch and a

half below my nipple-the one used for the tube). When you say

pathologist are you meaning pulmonologist? Or really a pathologist?

The other form of a biopsy is an Open Lung Biopsy which is much more

serious a surgery although VATS is invasive itself as they remove a

piece of your lung.

Did he not have you do a six minute walk to check your oxygen? If so,

how was it then? How has he decided you've got PF? I would definitely

say with the headaches that calls for monitoring your oxygen. In

fact, they need to know what your requirements are for the surgery

and recovery.

I'd certainly talk to my surgeon and find out how many of the

procedures he's done and how many have had complications.

VATS can detect some non PF issues but generally what its going to do

is to verify or determine what form of PF you have, whether its IPF

or one of the others. Now, that may be of benefit just because you

want to know or for future transplant or for clinical trials.

However, often its used for course of treatment. Therefore, if you

know you are or are not going to use prednisone regardless, then it

serves less purpose. While some believe Prednisone is helpful for

IPF, most don't see that or see minimal help. However, far more do

see benefit on other forms of PF.

I'm confused a bit myself by some inconsistencies. Your doctor is

talking about getting you on the transplant list and yet not even

monitored your oxygen levels or at least, if so, determined you don't

need oxygen?

I would want to have many more questions answered before the surgery

although if you do the biopsy doing it with a healthy lung is

important. But, with PF, doctors are to educate and advise you. You

have to manage your medical treatment and your life choices. You

haven't been given enough information to do so. Only submit to

surgery if you know why you're doing so. Only take medications if you

know why and both the benefits and side effects. Only enter a

clinical trial if you know completely what it involves. Only plan a

transplant if you understand what it involves and life after it is

like.

This isn't like going to the doctor and he determines you have an

infection and prescribes an antibiotic. That is cut and dry. Nothing

related to PF is. We've all made widely different decisions.

A very simple example is a survey we did on prednisone. 34 people

responded. 1 said they were never offered prednisone. 6 said they

decided not to use it. 10 said they have come off it or are in the

process. 13 said they are on it and have seen a benefit. 4 say they

are on it and have seen no benefit. This is complicated because there

are arguments as to its effectiveness on various forms and with most

people there are very severe side effects. There isn't a right

answer. Only a right one for you. And, you must be the one to make

it.

Many here have chosen not to have a biopsy. Some did but wouldn't if

they were doing it over. Others of us had one and are glad we did.

At the least before I had one I knew the nature of the biopsy, the

risks in it, had information on my oxygen levels including sleep,

knew why I wanted the biopsy and what my medication plans were

depending on the findings.

What other medical conditions do you have? This might affect

decisions. Certainly knowing what is causing the headaches is

important-Shortage of oxygen, neurological problem, sleep problem?

Your next meeting with your pulmonologist needs to be with a piece of

paper and a long list of questions. He may think that there isn't

need for a next meeting until after your biopsy. I think there's a

strong need. Also, I would absolutely want to talk to the surgeon at

length before agreeing. I might even want to get a second opinion

from another pulmonologist.

From what I can tell Pulmonology is not a specialty area at the only

teaching hospital in your area, although there are quite a few

pulmonologists. Are you sure you don't want to go to Duke before your

surgery for an opinion or somewhere else?

I'm just tossing a lot of things out but don't be pushed into

something until you're sure its right for you, whatever that is.

> > >

> > > I actually live in ton SC. I have a friend in my church

> > that is part

> > > of Mercy Flights that provides free air travel at any time for

> > transplant

> > > recipients.

> > >

> > > I currently have no medications prescribed.

> > >

> > > I have a question which is related to my current diagnosis. I

have

> > > headaches every day starting in the afternoon that last the

rest of

> > the day.

> > > My lung specialist had no theories and I have not found any

link to

> > IPF.

> > > Has anyone experienced these?

> > >

> > > My lung biopsy is next week. It looks like I will be out of it

for

> > 48 hours.

> > > My pathologist was pretty certain that it is IPF after

reviewing my

> > tests

> > > but wants to rule anything else out. He also indicated that I

have

> > perhaps

> > > the best lung specialist in the area.

> > >

> > > Todd Miles, (h) ©

> > >

> > > _____

> > >

> > > From: Breathe-Support

> > > [mailto:Breathe-Support ] On Behalf Of Beth

> > > Sent: Thursday, January 03, 2008 4:05 PM

> > > To: Breathe-Support

> > > Subject: Re: Glad to find this group

> > >

> > > Hi Todd and welcome to our corner of the internet. You have

found

> > what I

> > > think is the most amazing group of people I've ever had the

> > privilege of

> > > being in contact with.

> > >

> > > Are you in NC? I'm a new resident of Durham and am a patient of

> > Dr. Lake

> > > on at Duke. So far I'm very happy with the care I'm

> > getting. So far

> > > I'm still " too healthy " to be listed for transplant but I am

open

> > to that

> > > eventually if it becomes necessary. I had an open lung biopsy

in

> > June of

> > > 06. They initially thought I had IPF but that diagnosis was

> > refined to

> > > Fibrotic NSIP (non specific interstitial pneumonitis) I was on

> > prednisone

> > > for months but have now been off of it entirely for nearly a

year.

> > >

> > > Again, welcome and feel free to ask whatever questions you can

> > think of!

> > >

> > > Beth in NC Fibrotic NSIP 06/06

> > >

> > > Glad to find this group

> > >

> > > Just been diagnosed with IPF. Frustrating thing is I am

otherwise

> > > healthy, 46 yr old (past) runner, never smoked.

> > >

> > > I have a lung biopsy coming up to confirm what my lung

specialist

> > is

> > > certain of. Is there anything I should ask?

> > >

> > > Based on a confirmation my lung specialist is going to set up an

> > appt

> > > at Duke for getting on the list. Anything I should expect/ask

about

> > > this?

> > >

> > > Thanks so much.

> > >

> > > -Todd

> > >

> >

>

January 3, 2008

I think my nose might be bleeding. Are all newcomers grilled like this?

The procedure is VATS. I have had a battery of tests to date including

what my pulminoligist determined using a CT scan to be PF. I have

honeycombing in my lower lobes, a very cloudy. Areas in it as well. My

spirometry test show I have 48 % capacity left. My doctor hears velcro

when he listens to my lungs. I can't climb a set of stairs without

being breathless

From my limited knowledge and research it does not seem to me that my

doc is basing his diagnosis on partial info. I think he wants to be

sure thru the biopsy

> Well, we like a signature knowing who you are and your location and

> diagnosis although I can't remember to put mine most of the time.

>

> Now, I know I'm asking some questions you can't answer, but they are

> ones I would want to know before I'd submit to surgery.

>

> VATS is Video Assisted Thorocoscopic Surgery where they do the biopsy

> with a camera and laparoscopically. They cut three small holes and

> then leave a tube in one for you to drain after. Two are along the

> side of your ribs and one on your chest(mine is about an inch and a

> half below my nipple-the one used for the tube). When you say

> pathologist are you meaning pulmonologist? Or really a pathologist?

> The other form of a biopsy is an Open Lung Biopsy which is much more

> serious a surgery although VATS is invasive itself as they remove a

> piece of your lung.

>

> Did he not have you do a six minute walk to check your oxygen? If so,

> how was it then? How has he decided you've got PF? I would definitely

> say with the headaches that calls for monitoring your oxygen. In

> fact, they need to know what your requirements are for the surgery

> and recovery.

>

> I'd certainly talk to my surgeon and find out how many of the

> procedures he's done and how many have had complications.

>

> VATS can detect some non PF issues but generally what its going to do

> is to verify or determine what form of PF you have, whether its IPF

> or one of the others. Now, that may be of benefit just because you

> want to know or for future transplant or for clinical trials.

> However, often its used for course of treatment. Therefore, if you

> know you are or are not going to use prednisone regardless, then it

> serves less purpose. While some believe Prednisone is helpful for

> IPF, most don't see that or see minimal help. However, far more do

> see benefit on other forms of PF.

>

> I'm confused a bit myself by some inconsistencies. Your doctor is

> talking about getting you on the transplant list and yet not even

> monitored your oxygen levels or at least, if so, determined you don't

> need oxygen?

>

> I would want to have many more questions answered before the surgery

> although if you do the biopsy doing it with a healthy lung is

> important. But, with PF, doctors are to educate and advise you. You

> have to manage your medical treatment and your life choices. You

> haven't been given enough information to do so. Only submit to

> surgery if you know why you're doing so. Only take medications if you

> know why and both the benefits and side effects. Only enter a

> clinical trial if you know completely what it involves. Only plan a

> transplant if you understand what it involves and life after it is

> like.

>

> This isn't like going to the doctor and he determines you have an

> infection and prescribes an antibiotic. That is cut and dry. Nothing

> related to PF is. We've all made widely different decisions.

>

> A very simple example is a survey we did on prednisone. 34 people

> responded. 1 said they were never offered prednisone. 6 said they

> decided not to use it. 10 said they have come off it or are in the

> process. 13 said they are on it and have seen a benefit. 4 say they

> are on it and have seen no benefit. This is complicated because there

> are arguments as to its effectiveness on various forms and with most

> people there are very severe side effects. There isn't a right

> answer. Only a right one for you. And, you must be the one to make

> it.

>

> Many here have chosen not to have a biopsy. Some did but wouldn't if

> they were doing it over. Others of us had one and are glad we did.

>

> At the least before I had one I knew the nature of the biopsy, the

> risks in it, had information on my oxygen levels including sleep,

> knew why I wanted the biopsy and what my medication plans were

> depending on the findings.

>

> What other medical conditions do you have? This might affect

> decisions. Certainly knowing what is causing the headaches is

> important-Shortage of oxygen, neurological problem, sleep problem?

>

> Your next meeting with your pulmonologist needs to be with a piece of

> paper and a long list of questions. He may think that there isn't

> need for a next meeting until after your biopsy. I think there's a

> strong need. Also, I would absolutely want to talk to the surgeon at

> length before agreeing. I might even want to get a second opinion

> from another pulmonologist.

>

> From what I can tell Pulmonology is not a specialty area at the only

> teaching hospital in your area, although there are quite a few

> pulmonologists. Are you sure you don't want to go to Duke before your

> surgery for an opinion or somewhere else?

>

> I'm just tossing a lot of things out but don't be pushed into

> something until you're sure its right for you, whatever that is.

>

> > > >

> > > > I actually live in ton SC. I have a friend in my church

> > > that is part

> > > > of Mercy Flights that provides free air travel at any time for

> > > transplant

> > > > recipients.

> > > >

> > > > I currently have no medications prescribed.

> > > >

> > > > I have a question which is related to my current diagnosis. I

> have

> > > > headaches every day starting in the afternoon that last the

> rest of

> > > the day.

> > > > My lung specialist had no theories and I have not found any

> link to

> > > IPF.

> > > > Has anyone experienced these?

> > > >

> > > > My lung biopsy is next week. It looks like I will be out of it

> for

> > > 48 hours.

> > > > My pathologist was pretty certain that it is IPF after

> reviewing my

> > > tests

> > > > but wants to rule anything else out. He also indicated that I

> have

> > > perhaps

> > > > the best lung specialist in the area.

> > > >

> > > > Todd Miles, (h) ©

> > > >

> > > > _____

> > > >

> > > > From: Breathe-Support

> > > > [mailto:Breathe-Support ] On Behalf Of Beth

> > > > Sent: Thursday, January 03, 2008 4:05 PM

> > > > To: Breathe-Support

> > > > Subject: Re: Glad to find this group

> > > >

> > > > Hi Todd and welcome to our corner of the internet. You have

> found

> > > what I

> > > > think is the most amazing group of people I've ever had the

> > > privilege of

> > > > being in contact with.

> > > >

> > > > Are you in NC? I'm a new resident of Durham and am a patient of

> > > Dr. Lake

> > > > on at Duke. So far I'm very happy with the care I'm

> > > getting. So far

> > > > I'm still " too healthy " to be listed for transplant but I am

> open

> > > to that

> > > > eventually if it becomes necessary. I had an open lung biopsy

> in

> > > June of

> > > > 06. They initially thought I had IPF but that diagnosis was

> > > refined to

> > > > Fibrotic NSIP (non specific interstitial pneumonitis) I was on

> > > prednisone

> > > > for months but have now been off of it entirely for nearly a

> year.

> > > >

> > > > Again, welcome and feel free to ask whatever questions you can

> > > think of!

> > > >

> > > > Beth in NC Fibrotic NSIP 06/06

> > > >

> > > > Glad to find this group

> > > >

> > > > Just been diagnosed with IPF. Frustrating thing is I am

> otherwise

> > > > healthy, 46 yr old (past) runner, never smoked.

> > > >

> > > > I have a lung biopsy coming up to confirm what my lung

> specialist

> > > is

> > > > certain of. Is there anything I should ask?

> > > >

> > > > Based on a confirmation my lung specialist is going to set up an

> > > appt

> > > > at Duke for getting on the list. Anything I should expect/ask

> about

> > > > this?

> > > >

> > > > Thanks so much.

> > > >

> > > > -Todd

> > > >

> > >

> >

>

January 3, 2008

Hi Todd - I am also new to the group. First time on with the group a

couple of nights ago. I found myself feeling quite at home and I

hope you will as well. These folks know so much and are so friendly.

Welcome.

- NSIP w/PF 12/06

> > > > >

> > > > > I actually live in ton SC. I have a friend in my

church

> > > > that is part

> > > > > of Mercy Flights that provides free air travel at any time

for

> > > > transplant

> > > > > recipients.

> > > > >

> > > > > I currently have no medications prescribed.

> > > > >

> > > > > I have a question which is related to my current

diagnosis. I

> > have

> > > > > headaches every day starting in the afternoon that last the

> > rest of

> > > > the day.

> > > > > My lung specialist had no theories and I have not found any

> > link to

> > > > IPF.

> > > > > Has anyone experienced these?

> > > > >

> > > > > My lung biopsy is next week. It looks like I will be out of

it

> > for

> > > > 48 hours.

> > > > > My pathologist was pretty certain that it is IPF after

> > reviewing my

> > > > tests

> > > > > but wants to rule anything else out. He also indicated that

I

> > have

> > > > perhaps

> > > > > the best lung specialist in the area.

> > > > >

> > > > > Todd Miles, (h) ©

> > > > >

> > > > > _____

> > > > >

> > > > > From: Breathe-Support

> > > > > [mailto:Breathe-Support ] On Behalf Of

Beth

> > > > > Sent: Thursday, January 03, 2008 4:05 PM

> > > > > To: Breathe-Support

> > > > > Subject: Re: Glad to find this group

> > > > >

> > > > > Hi Todd and welcome to our corner of the internet. You have

> > found

> > > > what I

> > > > > think is the most amazing group of people I've ever had the

> > > > privilege of

> > > > > being in contact with.

> > > > >

> > > > > Are you in NC? I'm a new resident of Durham and am a

patient of

> > > > Dr. Lake

> > > > > on at Duke. So far I'm very happy with the care I'm

> > > > getting. So far

> > > > > I'm still " too healthy " to be listed for transplant but I am

> > open

> > > > to that

> > > > > eventually if it becomes necessary. I had an open lung

biopsy

> > in

> > > > June of

> > > > > 06. They initially thought I had IPF but that diagnosis was

> > > > refined to

> > > > > Fibrotic NSIP (non specific interstitial pneumonitis) I

was on

> > > > prednisone

> > > > > for months but have now been off of it entirely for nearly a

> > year.

> > > > >

> > > > > Again, welcome and feel free to ask whatever questions you

can

> > > > think of!

> > > > >

> > > > > Beth in NC Fibrotic NSIP 06/06

> > > > >

> > > > > Glad to find this group

> > > > >

> > > > > Just been diagnosed with IPF. Frustrating thing is I am

> > otherwise

> > > > > healthy, 46 yr old (past) runner, never smoked.

> > > > >

> > > > > I have a lung biopsy coming up to confirm what my lung

> > specialist

> > > > is

> > > > > certain of. Is there anything I should ask?

> > > > >

> > > > > Based on a confirmation my lung specialist is going to set

up an

> > > > appt

> > > > > at Duke for getting on the list. Anything I should

expect/ask

> > about

> > > > > this?

> > > > >

> > > > > Thanks so much.

> > > > >

> > > > > -Todd

> > > > >

> > > >

> > >

> >

>

January 3, 2008

Don't mean to be grilling.....apologize if it seems so.....but do you

agree with his decision...is it right for you? the fact you have 48%

capacity honeycombing and can't climb steps surely shocks me you're

not requiring oxygen.....and VATS is good to verify......greatly

increases probability of being right.....may be right for

you......but still I considered a long time what I'd do different

based on it.....you'll find a lot of argument on this site over them.

I'm one who did want one so not that I'm questioning, just was trying

to be sure that you weren't letting someone else, even a doctor,

decide for you

> > > > >

> > > > > I actually live in ton SC. I have a friend in my

church

> > > > that is part

> > > > > of Mercy Flights that provides free air travel at any time

for

> > > > transplant

> > > > > recipients.

> > > > >

> > > > > I currently have no medications prescribed.

> > > > >

> > > > > I have a question which is related to my current

diagnosis. I

> > have

> > > > > headaches every day starting in the afternoon that last the

> > rest of

> > > > the day.

> > > > > My lung specialist had no theories and I have not found any

> > link to

> > > > IPF.

> > > > > Has anyone experienced these?

> > > > >

> > > > > My lung biopsy is next week. It looks like I will be out of

it

> > for

> > > > 48 hours.

> > > > > My pathologist was pretty certain that it is IPF after

> > reviewing my

> > > > tests

> > > > > but wants to rule anything else out. He also indicated that

I

> > have

> > > > perhaps

> > > > > the best lung specialist in the area.

> > > > >

> > > > > Todd Miles, (h) ©

> > > > >

> > > > > _____

> > > > >

> > > > > From: Breathe-Support

> > > > > [mailto:Breathe-Support ] On Behalf Of

Beth

> > > > > Sent: Thursday, January 03, 2008 4:05 PM

> > > > > To: Breathe-Support

> > > > > Subject: Re: Glad to find this group

> > > > >

> > > > > Hi Todd and welcome to our corner of the internet. You have

> > found

> > > > what I

> > > > > think is the most amazing group of people I've ever had the

> > > > privilege of

> > > > > being in contact with.

> > > > >

> > > > > Are you in NC? I'm a new resident of Durham and am a

patient of

> > > > Dr. Lake

> > > > > on at Duke. So far I'm very happy with the care I'm

> > > > getting. So far

> > > > > I'm still " too healthy " to be listed for transplant but I am

> > open

> > > > to that

> > > > > eventually if it becomes necessary. I had an open lung

biopsy

> > in

> > > > June of

> > > > > 06. They initially thought I had IPF but that diagnosis was

> > > > refined to

> > > > > Fibrotic NSIP (non specific interstitial pneumonitis) I

was on

> > > > prednisone

> > > > > for months but have now been off of it entirely for nearly a

> > year.

> > > > >

> > > > > Again, welcome and feel free to ask whatever questions you

can

> > > > think of!

> > > > >

> > > > > Beth in NC Fibrotic NSIP 06/06

> > > > >

> > > > > Glad to find this group

> > > > >

> > > > > Just been diagnosed with IPF. Frustrating thing is I am

> > otherwise

> > > > > healthy, 46 yr old (past) runner, never smoked.

> > > > >

> > > > > I have a lung biopsy coming up to confirm what my lung

> > specialist

> > > > is

> > > > > certain of. Is there anything I should ask?

> > > > >

> > > > > Based on a confirmation my lung specialist is going to set

up an

> > > > appt

> > > > > at Duke for getting on the list. Anything I should

expect/ask

> > about

> > > > > this?

> > > > >

> > > > > Thanks so much.

> > > > >

> > > > > -Todd

> > > > >

> > > >

> > >

> >

>

January 3, 2008

You can slug me back....but don't let me or anyone, including your

doctor make your life choices for you. I'd get the VATS for my

reasons. Gwynne did for her reasons. But read the reasons others

disagree.

All information is partial....simply because of all we don't know and

no one does.

And you need an oximeter to check yourself or a 24 hour oximeter test

or both.

And the headache may well be from lack of oxygen....if not, it needs

checking out.

Some doctors will make it all sound so simple and straightforward. It

isn't. But also some doctors make you think life is over too so you

might as well sit on the sofa and wait to die. Thats not true either.

Those who have been dealing with this longest still learn something

new every day. Sometimes the hard way. I had my flu vaccine. I have

the flu.....didn't plan on New Years Eve in ER but I'm still upbeat

because of my incredible friends here. Joyce found out the hard way

about replacing husbands replacing humidifiers a couple of days ago

and she's our Queen.

Pulmonologists will not teach you about all your oxygen choices or

how to deal with a true bleeding nose from the cannula or how to get

around on oxygen or travel or how to avoid ripping your nose off when

your cannula gets caught or avoid killing yourself tripping over

hoses or how to deal with friends and family in denial or all the

precautions against germs and colds or the side effects of the

antibiotics you'll get for pneumonia which you will have or whats

normal at given stages and what isn't or how to deal with your oxygen

supplier and what you deserve.

The will also by their very tones and knowledge sound authoritative

and like their advice is the only way. They may not tell you how many

others don't agree. They can only tell you what they've heard about

how a VATS feels and what it feels like to be on Prednisone or Imuran

or both. I can tell you how my VATS was but many others can tell you

theirs. Many here can tell you their experience with prednisone. Some

doctors will tell you about NAC and most of us would have said it

couldn't hurt anything until a recent U VA study. Now it appears it

does hurt some mice. But we have no idea on humans. Many kept taking

it and a couple of us wimped out.

Confusing? Absolutely. But, its your life so battle through and learn

what you can to do whats best for you. No one in the world can tell

you what that is.

> > > > >

> > > > > I actually live in ton SC. I have a friend in my

church

> > > > that is part

> > > > > of Mercy Flights that provides free air travel at any time

for

> > > > transplant

> > > > > recipients.

> > > > >

> > > > > I currently have no medications prescribed.

> > > > >

> > > > > I have a question which is related to my current

diagnosis. I

> > have

> > > > > headaches every day starting in the afternoon that last the

> > rest of

> > > > the day.

> > > > > My lung specialist had no theories and I have not found any

> > link to

> > > > IPF.

> > > > > Has anyone experienced these?

> > > > >

> > > > > My lung biopsy is next week. It looks like I will be out of

it

> > for

> > > > 48 hours.

> > > > > My pathologist was pretty certain that it is IPF after

> > reviewing my

> > > > tests

> > > > > but wants to rule anything else out. He also indicated that

I

> > have

> > > > perhaps

> > > > > the best lung specialist in the area.

> > > > >

> > > > > _____

> > > > >

> > > > > From: Breathe-Support

> > > > > [mailto:Breathe-Support ] On Behalf Of

Beth

> > > > > Sent: Thursday, January 03, 2008 4:05 PM

> > > > > To: Breathe-Support

> > > > > Subject: Re: Glad to find this group

> > > > >

> > > > > Hi Todd and welcome to our corner of the internet. You have

> > found

> > > > what I

> > > > > think is the most amazing group of people I've ever had the

> > > > privilege of

> > > > > being in contact with.

> > > > >

> > > > > Are you in NC? I'm a new resident of Durham and am a

patient of

> > > > Dr. Lake

> > > > > on at Duke. So far I'm very happy with the care I'm

> > > > getting. So far

> > > > > I'm still " too healthy " to be listed for transplant but I am

> > open

> > > > to that

> > > > > eventually if it becomes necessary. I had an open lung

biopsy

> > in

> > > > June of

> > > > > 06. They initially thought I had IPF but that diagnosis was

> > > > refined to

> > > > > Fibrotic NSIP (non specific interstitial pneumonitis) I

was on

> > > > prednisone

> > > > > for months but have now been off of it entirely for nearly a

> > year.

> > > > >

> > > > > Again, welcome and feel free to ask whatever questions you

can

> > > > think of!

> > > > >

> > > > > Beth in NC Fibrotic NSIP 06/06

> > > > >

> > > > > Glad to find this group

> > > > >

> > > > > Just been diagnosed with IPF. Frustrating thing is I am

> > otherwise

> > > > > healthy, 46 yr old (past) runner, never smoked.

> > > > >

> > > > > I have a lung biopsy coming up to confirm what my lung

> > specialist

> > > > is

> > > > > certain of. Is there anything I should ask?

> > > > >

> > > > > Based on a confirmation my lung specialist is going to set

up an

> > > > appt

> > > > > at Duke for getting on the list. Anything I should

expect/ask

> > about

> > > > > this?

> > > > >

> > > > > Thanks so much.

> > > > >

> > > > > -Todd

> > > > >

> > > >

> > >

> >

>

January 4, 2008

Todd,

Ah, ton, SC....the old south. I love that part of the world. I especially love it's history. Eugenia Price writes novels about the history of those parts and they are so well written and authentic. Her books are based on fact, which makes it so much more exciting. It is beautiful there and the eatin' is soooooo good!

I get headaches when my oxygen gets low. Ask your doc about a prescription for an oximeter. If he is resistant, you tell him that at least 98% of PF patients have them. Mine has saved my life more than once. The last time being Sunday night.

I'm glad you are having biopsy so that you know just what you are dealing with. There are many misdiagnoses. We have people on this group that were given a diagnoses using only ct scans and treatment could have been deadly. Me included. Let us know when you are home and when you have your diagnosis. I will offer up prayers on your behalf. Be prepared to share. Sharing is teaching!

I take medication which are either for other ailments or that treat symptoms of PF. Drugs to help alleviate mucus, to open airways, to slow inflamation, etc.

Take care. I pray that God guides the hands that do your biopsy and that you recuperate quickly.

Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.

>> I actually live in ton SC. I have a friend in my church that is part> of Mercy Flights that provides free air travel at any time for transplant> recipients.> > > > I currently have no medications prescribed.> > > > I have a question which is related to my current diagnosis. I have> headaches every day starting in the afternoon that last the rest of the day.> My lung specialist had no theories and I have not found any link to IPF.> Has anyone experienced these?> > > > My lung biopsy is next week. It looks like I will be out of it for 48 hours.> My pathologist was pretty certain that it is IPF after reviewing my tests> but wants to rule anything else out. He also indicated that I have perhaps> the best lung specialist in the area.> > > > Todd Miles, (h) © > > > > _____ > > From: Breathe-Support > [mailto:Breathe-Support ] On Behalf Of Beth> Sent: Thursday, January 03, 2008 4:05 PM> To: Breathe-Support > Subject: Re: Glad to find this group> > > > Hi Todd and welcome to our corner of the internet. You have found what I> think is the most amazing group of people I've ever had the privilege of> being in contact with.> > Are you in NC? I'm a new resident of Durham and am a patient of Dr. Lake> on at Duke. So far I'm very happy with the care I'm getting. So far> I'm still "too healthy" to be listed for transplant but I am open to that> eventually if it becomes necessary. I had an open lung biopsy in June of> 06. They initially thought I had IPF but that diagnosis was refined to> Fibrotic NSIP (non specific interstitial pneumonitis) I was on prednisone> for months but have now been off of it entirely for nearly a year.> > > > Again, welcome and feel free to ask whatever questions you can think of!> > > Beth in NC Fibrotic NSIP 06/06> > > > > > > > Glad to find this group> > Just been diagnosed with IPF. Frustrating thing is I am otherwise > healthy, 46 yr old (past) runner, never smoked.> > I have a lung biopsy coming up to confirm what my lung specialist is > certain of. Is there anything I should ask?> > Based on a confirmation my lung specialist is going to set up an appt > at Duke for getting on the list. Anything I should expect/ask about > this?> > Thanks so much.> > -Todd>

January 4, 2008

> > > > >

> > > > > I actually live in ton SC. I have a friend in my

church

> > > > that is part

> > > > > of Mercy Flights that provides free air travel at any time

for

> > > > transplant

> > > > > recipients.

> > > > >

> > > > > I currently have no medications prescribed.

> > > > >

> > > > > I have a question which is related to my current

diagnosis. I

> > have

> > > > > headaches every day starting in the afternoon that last the

> > rest of

> > > > the day.

> > > > > My lung specialist had no theories and I have not found any

> > link to

> > > > IPF.

> > > > > Has anyone experienced these?

> > > > >

> > > > > My lung biopsy is next week. It looks like I will be out of

it

> > for

> > > > 48 hours.

> > > > > My pathologist was pretty certain that it is IPF after

> > reviewing my

> > > > tests

> > > > > but wants to rule anything else out. He also indicated that

I

> > have

> > > > perhaps

> > > > > the best lung specialist in the area.

> > > > >

> > > > > _____

> > > > >

> > > > > From: Breathe-Support

> > > > > [mailto:Breathe-Support ] On Behalf Of

Beth

> > > > > Sent: Thursday, January 03, 2008 4:05 PM

> > > > > To: Breathe-Support

> > > > > Subject: Re: Glad to find this group

> > > > >

> > > > > Hi Todd and welcome to our corner of the internet. You have

> > found

> > > > what I

> > > > > think is the most amazing group of people I've ever had the

> > > > privilege of

> > > > > being in contact with.

> > > > >

> > > > > Are you in NC? I'm a new resident of Durham and am a

patient of

> > > > Dr. Lake

> > > > > on at Duke. So far I'm very happy with the care I'm

> > > > getting. So far

> > > > > I'm still " too healthy " to be listed for transplant but I am

> > open

> > > > to that

> > > > > eventually if it becomes necessary. I had an open lung

biopsy

> > in

> > > > June of

> > > > > 06. They initially thought I had IPF but that diagnosis was

> > > > refined to

> > > > > Fibrotic NSIP (non specific interstitial pneumonitis) I

was on

> > > > prednisone

> > > > > for months but have now been off of it entirely for nearly a

> > year.

> > > > >

> > > > > Again, welcome and feel free to ask whatever questions you

can

> > > > think of!

> > > > >

> > > > > Beth in NC Fibrotic NSIP 06/06

> > > > >

> > > > > Glad to find this group

> > > > >

> > > > > Just been diagnosed with IPF. Frustrating thing is I am

> > otherwise

> > > > > healthy, 46 yr old (past) runner, never smoked.

> > > > >

> > > > > I have a lung biopsy coming up to confirm what my lung

> > specialist

> > > > is

> > > > > certain of. Is there anything I should ask?

> > > > >

> > > > > Based on a confirmation my lung specialist is going to set

up an

> > > > appt

> > > > > at Duke for getting on the list. Anything I should

expect/ask

> > about

> > > > > this?

> > > > >

> > > > > Thanks so much.

> > > > >

> > > > > -Todd

> > > > >

> > > >

> > >

> >

>

January 4, 2008

Todd,

Yes, we reserve the right to grill you at any time. Believe it or not, we want to learn from YOU. But, you can reserve the right to ignore us and our nosiness any time you want.

Ever since I was diagnosed soon to be 11 years ago, I have been ravenous for information. Educating myself is part of the reason I didn't die in my alloted 2-4 years. God helps those who help themselves. I learn more here than anywhere else online or from med. pros.

We want to help you, too. Forgive us if we get tooooooo nosey.

Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.> > > > >> > > > > I actually live in ton SC. I have a friend in my church> > > > that is part> > > > > of Mercy Flights that provides free air travel at any time for> > > > transplant> > > > > recipients.> > > > >> > > > >> > > > >> > > > > I currently have no medications prescribed.> > > > >> > > > >> > > > >> > > > > I have a question which is related to my current diagnosis. I> > have> > > > > headaches every day starting in the afternoon that last the> > rest of> > > > the day.> > > > > My lung specialist had no theories and I have not found any> > link to> > > > IPF.> > > > > Has anyone experienced these?> > > > >> > > > >> > > > >> > > > > My lung biopsy is next week. It looks like I will be out of it> > for> > > > 48 hours.> > > > > My pathologist was pretty certain that it is IPF after> > reviewing my> > > > tests> > > > > but wants to rule anything else out. He also indicated that I> > have> > > > perhaps> > > > > the best lung specialist in the area.> > > > >> > > > >> > > > >> > > > > Todd Miles, (h) © > > > > >> > > > >> > > > >> > > > > _____> > > > >> > > > > From: Breathe-Support > > > > > [mailto:Breathe-Support ] On Behalf Of Beth> > > > > Sent: Thursday, January 03, 2008 4:05 PM> > > > > To: Breathe-Support > > > > > Subject: Re: Glad to find this group> > > > >> > > > >> > > > >> > > > > Hi Todd and welcome to our corner of the internet. You have> > found> > > > what I> > > > > think is the most amazing group of people I've ever had the> > > > privilege of> > > > > being in contact with.> > > > >> > > > > Are you in NC? I'm a new resident of Durham and am a patient of> > > > Dr. Lake> > > > > on at Duke. So far I'm very happy with the care I'm> > > > getting. So far> > > > > I'm still "too healthy" to be listed for transplant but I am> > open> > > > to that> > > > > eventually if it becomes necessary. I had an open lung biopsy> > in> > > > June of> > > > > 06. They initially thought I had IPF but that diagnosis was> > > > refined to> > > > > Fibrotic NSIP (non specific interstitial pneumonitis) I was on> > > > prednisone> > > > > for months but have now been off of it entirely for nearly a> > year.> > > > >> > > > >> > > > >> > > > > Again, welcome and feel free to ask whatever questions you can> > > > think of!> > > > >> > > > >> > > > > Beth in NC Fibrotic NSIP 06/06> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > > Glad to find this group> > > > >> > > > > Just been diagnosed with IPF. Frustrating thing is I am> > otherwise> > > > > healthy, 46 yr old (past) runner, never smoked.> > > > >> > > > > I have a lung biopsy coming up to confirm what my lung> > specialist> > > > is> > > > > certain of. Is there anything I should ask?> > > > >> > > > > Based on a confirmation my lung specialist is going to set up an> > > > appt> > > > > at Duke for getting on the list. Anything I should expect/ask> > about> > > > > this?> > > > >> > > > > Thanks so much.> > > > >> > > > > -Todd> > > > >> > > >> > > >> > > >> > >> >> >> >>

January 4, 2008

,

I don't think I welcomed you properly. So this is it. We are so blessed that you chose to land here. We will love you, listen to you. pray for you and pick your brain. We are all sick and we all need the same thing.

Just toss it out there and we will do the best we can to help. God's blessings.

Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.> > > > > >> > > > > > I actually live in ton SC. I have a friend in my > church> > > > > that is part> > > > > > of Mercy Flights that provides free air travel at any time > for> > > > > transplant> > > > > > recipients.> > > > > >> > > > > >> > > > > >> > > > > > I currently have no medications prescribed.> > > > > >> > > > > >> > > > > >> > > > > > I have a question which is related to my current > diagnosis. I> > > have> > > > > > headaches every day starting in the afternoon that last the> > > rest of> > > > > the day.> > > > > > My lung specialist had no theories and I have not found any> > > link to> > > > > IPF.> > > > > > Has anyone experienced these?> > > > > >> > > > > >> > > > > >> > > > > > My lung biopsy is next week. It looks like I will be out of > it> > > for> > > > > 48 hours.> > > > > > My pathologist was pretty certain that it is IPF after> > > reviewing my> > > > > tests> > > > > > but wants to rule anything else out. He also indicated that > I> > > have> > > > > perhaps> > > > > > the best lung specialist in the area.> > > > > >> > > > > >> > > > > >> > > > > > Todd Miles, (h) © > > > > > >> > > > > >> > > > > >> > > > > > _____> > > > > >> > > > > > From: Breathe-Support > > > > > > [mailto:Breathe-Support ] On Behalf Of > Beth> > > > > > Sent: Thursday, January 03, 2008 4:05 PM> > > > > > To: Breathe-Support > > > > > > Subject: Re: Glad to find this group> > > > > >> > > > > >> > > > > >> > > > > > Hi Todd and welcome to our corner of the internet. You have> > > found> > > > > what I> > > > > > think is the most amazing group of people I've ever had the> > > > > privilege of> > > > > > being in contact with.> > > > > >> > > > > > Are you in NC? I'm a new resident of Durham and am a > patient of> > > > > Dr. Lake> > > > > > on at Duke. So far I'm very happy with the care I'm> > > > > getting. So far> > > > > > I'm still "too healthy" to be listed for transplant but I am> > > open> > > > > to that> > > > > > eventually if it becomes necessary. I had an open lung > biopsy> > > in> > > > > June of> > > > > > 06. They initially thought I had IPF but that diagnosis was> > > > > refined to> > > > > > Fibrotic NSIP (non specific interstitial pneumonitis) I > was on> > > > > prednisone> > > > > > for months but have now been off of it entirely for nearly a> > > year.> > > > > >> > > > > >> > > > > >> > > > > > Again, welcome and feel free to ask whatever questions you > can> > > > > think of!> > > > > >> > > > > >> > > > > > Beth in NC Fibrotic NSIP 06/06> > > > > >> > > > > >> > > > > >> > > > > >> > > > > >> > > > > >> > > > > >> > > > > > Glad to find this group> > > > > >> > > > > > Just been diagnosed with IPF. Frustrating thing is I am> > > otherwise> > > > > > healthy, 46 yr old (past) runner, never smoked.> > > > > >> > > > > > I have a lung biopsy coming up to confirm what my lung> > > specialist> > > > > is> > > > > > certain of. Is there anything I should ask?> > > > > >> > > > > > Based on a confirmation my lung specialist is going to set > up an> > > > > appt> > > > > > at Duke for getting on the list. Anything I should > expect/ask> > > about> > > > > > this?> > > > > >> > > > > > Thanks so much.> > > > > >> > > > > > -Todd> > > > > >> > > > >> > > > >> > > > >> > > >> > >> > >> > >> >>

January 4, 2008

Todd... it's possible the headaches could be lack of O2 after you've been active for some hours but I would think a Dr. would know this and tell you. Also could be stress. That damned stress lays around and on us like a shawl sometimes.

Does Aspirin or Tylenol help or do you need something stronger? Headaches can also be a side effect of 'something'...meds maybe.

I know they are a nuisance...I have them too.

Mama-Sher, ild 3-06, OR.Don't fret about tomorrow, God is already there!

Glad to find this group

Just been diagnosed with IPF. Frustrating thing is I am otherwise healthy, 46 yr old (past) runner, never smoked.I have a lung biopsy coming up to confirm what my lung specialist is certain of. Is there anything I should ask?Based on a confirmation my lung specialist is going to set up an appt at Duke for getting on the list. Anything I should expect/ask about this?Thanks so much.-Todd

January 4, 2008

Bruce... I knew you (and others) would respond to Todd. I don't have the experience to be of help. Since I opt 'out' I can't offer much.

Mama-Sher, ild 3-06, OR.Don't fret about tomorrow, God is already there!

Glad to find this group> > Just been diagnosed with IPF. Frustrating thing is I am otherwise > healthy, 46 yr old (past) runner, never smoked.> > I have a lung biopsy coming up to confirm what my lung specialist is > certain of. Is there anything I should ask?> > Based on a confirmation my lung specialist is going to set up an appt > at Duke for getting on the list. Anything I should expect/ask about > this?> > Thanks so much.> > -Todd>

January 4, 2008

Thanks Sher for your comments. Yes, Ibuprofen does take the edge off. Most days I can wait until 2-3 in the afternoon before I have to take something. I also have a nagging stomach quesiness that only goes away by eating something. As for meds I am not on anything yet. My doc has perscribed a cough medicine to handle the dry cough and sore throat but it is a narcotic so trying to avoid it.

Todd... it's possible the headaches could be lack of O2 after you've been active for some hours but I would think a Dr. would know this and tell you. Also could be stress. That damned stress lays around and on us like a shawl sometimes.

Does Aspirin or Tylenol help or do you need something stronger? Headaches can also be a side effect of 'something'...meds maybe.

I know they are a nuisance...I have them too.

Mama-Sher, ild 3-06, OR.Don't fret about tomorrow, God is already there!

Glad to find this group

Just been diagnosed with IPF. Frustrating thing is I am otherwise healthy, 46 yr old (past) runner, never smoked.I have a lung biopsy coming up to confirm what my lung specialist is certain of. Is there anything I should ask?Based on a confirmation my lung specialist is going to set up an appt at Duke for getting on the list. Anything I should expect/ask about this?Thanks so much.

-Todd

January 4, 2008

Todd...I'm sure glad Bruce responded to you . As I read your posts, I ask politely, have you done enough research before such a tough procedure?

Mama-Sher, ild 3-06, OR.Don't fret about tomorrow, God is already there!

Glad to find this group> >> > Just been diagnosed with IPF. Frustrating thing is I am otherwise> > healthy, 46 yr old (past) runner, never smoked.> >> > I have a lung biopsy coming up to confirm what my lung specialist> is> > certain of. Is there anything I should ask?> >> > Based on a confirmation my lung specialist is going to set up an> appt> > at Duke for getting on the list. Anything I should expect/ask about> > this?> >> > Thanks so much.> >> > -Todd> >>>>

January 4, 2008

A headache hitting you consistently at that time could be many things

but the first thing that pops into my mind is a sleep disorder such

as sleep apnea. However, it could also be that it when the oxygen

shortage hits you based on activities of the day. If your snoring is

bad that could be a sign of sleep issues and could not only cause the

headache but even some of the sore throat and dry mouth, although so

many other things that could cause the throat problem.

A dry cough is common with PF and one of the signs we normally

realize only in retrospect. As to the sore throat and narcotic, did

the doctor attribute this all to your pf or to something else such as

a cold or infection? We all become paranoid about avoiding germs and

treating all colds and infections quickly and strongly as our lungs

can't afford anything hitting them.

>

> > *Todd... it's possible the headaches could be lack of O2

after you've

> > been active for some hours but I would think a Dr. would know

this and tell

> > you. Also could be stress. That damned stress lays around and on

us like a

> > shawl sometimes.*

> > * Does Aspirin or Tylenol help or do you need something

stronger?

> > Headaches can also be a side effect of 'something'...meds maybe.*

> > *I know they are a nuisance...I have them too.*

> > Mama-Sher, ild 3-06, OR.

> > Don't fret about tomorrow, God is already there!

> >

> > Glad to find this group

> >

> > Just been diagnosed with IPF. Frustrating thing is I am otherwise

> > healthy, 46 yr old (past) runner, never smoked.

> >

> > I have a lung biopsy coming up to confirm what my lung specialist

is

> > certain of. Is there anything I should ask?

> >

> > Based on a confirmation my lung specialist is going to set up an

appt

> > at Duke for getting on the list. Anything I should expect/ask

about

> > this?

> >

> > Thanks so much.

> >

> > -Todd

> >

>

January 4, 2008

Bruce. You do offer such good information. I would add too, at the very least, get a second opinion. I did, didn't use the second Dr. because he immediately wanted to do an olb. (open lung bio). But I received good confirmation from him.

Mama-Sher, ild 3-06, OR.Don't fret about tomorrow, God is already there!

Glad to find this group> > >> > > Just been diagnosed with IPF. Frustrating thing is I am otherwise> > > healthy, 46 yr old (past) runner, never smoked.> > >> > > I have a lung biopsy coming up to confirm what my lung specialist> > is> > > certain of. Is there anything I should ask?> > >> > > Based on a confirmation my lung specialist is going to set up an> > appt> > > at Duke for getting on the list. Anything I should expect/ask about> > > this?> > >> > > Thanks so much.> > >> > > -Todd> > >> >> >> >>

January 4, 2008

Todd...are you teasing us or are you serious about 'being grilled'?

We do tend to jump right in and try to help or prevent more trouble. I hope we haven't offended you!

Mama-Sher, ild 3-06, OR.Don't fret about tomorrow, God is already there!

Glad to find this group> > > >> > > > Just been diagnosed with IPF. Frustrating thing is I am> otherwise> > > > healthy, 46 yr old (past) runner, never smoked.> > > >> > > > I have a lung biopsy coming up to confirm what my lung> specialist> > > is> > > > certain of. Is there anything I should ask?> > > >> > > > Based on a confirmation my lung specialist is going to set up an> > > appt> > > > at Duke for getting on the list. Anything I should expect/ask> about> > > > this?> > > >> > > > Thanks so much.> > > >> > > > -Todd> > > >> > >> > >> > >> >>>>

January 4, 2008

Todd...for the sake of conversation I'm one who will not do a VATS or OLB. My age is a factor (69) and what good would it do anyway? There is no cure for IPF, or treatment and I will not take Prednisone due to the serious side effects.

PFTs and C-scans keep me informed.

Because of other major health problems, I can't bear the thought of my poor body going through anything so harsh as any lung surgery.

Only my opinion.

Mama-Sher, ild 3-06, OR.Don't fret about tomorrow, God is already there!

Glad to find this group> > > > >> > > > > Just been diagnosed with IPF. Frustrating thing is I am> > otherwise> > > > > healthy, 46 yr old (past) runner, never smoked.> > > > >> > > > > I have a lung biopsy coming up to confirm what my lung> > specialist> > > > is> > > > > certain of. Is there anything I should ask?> > > > >> > > > > Based on a confirmation my lung specialist is going to set up an> > > > appt> > > > > at Duke for getting on the list. Anything I should expect/ask> > about> > > > > this?> > > > >> > > > > Thanks so much.> > > > >> > > > > -Todd> > > > >> > > >> > > >> > > >> > >> >> >> >>

January 4, 2008

Todd... well, if you're not on meds then that isn't it.

Maybe the headaches/stomach is as simply as needing food.

Mama-Sher, ild 3-06, OR.Don't fret about tomorrow, God is already there!

Glad to find this group

Just been diagnosed with IPF. Frustrating thing is I am otherwise healthy, 46 yr old (past) runner, never smoked.I have a lung biopsy coming up to confirm what my lung specialist is certain of. Is there anything I should ask?Based on a confirmation my lung specialist is going to set up an appt at Duke for getting on the list. Anything I should expect/ask about this?Thanks so much. -Todd

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