Re: Glad to find this group

[Guest guest]

That's a Bummer Todd..you must be feeling really shocked right now...IPF is one of those weird ones that isn't linked to smoking history ..smokers do get it of course but non-smokers are just as well represented if not more so!

Welcome to our Board...you'll find us a helpful, chatty bunch & good listeners We do like to have a giggle every now & then BUT - just a warning - don't believe everything you're told about a certain 'crazy' member from Australia!

in Australia.

IPF: Fibrotic NSIP/UIP?????

Reynauds'

May 2007 >> 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>

[Guest guest]

Todd,

You are welcome here. Pulmonary Fibrosis is no respecter of persons. Healthy, smoker, non smoker, fat, thin, old, young.....the monster comes anyway. I hate it, I hate it, I hate it. Still comes.

You are getting excellent care. Duke is among the best if not the best lung center in our country. You are fortunate that your doctor recognizes the urgency of excellent care.

Ask for copies of all reports. Begin to compile and manage your own health care. Educate yourself! Up until the time of your appointment, read until your eyes fall out. Then take notes and have questions written down. Don't hesitate to ask the scary questions.

May God be with you. We will be here.

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

[Guest guest]

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

[Guest guest]

Hi Todd, when my saturation gets to 90 or lower I have a terrible headache hit right in my forehead area.As soon as I get my 02 where it should be it goes away. Do you check your saturation?Take Care of You. God Bless Love and Prayers, Peggy  ipf 6/04 Florida"Worry looks around, Sorry looks back, Faith looks up." 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  BethSent: Thursday, January 03, 2008 4:05 PMTo: 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 groupJust 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 

[Guest guest]

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

>