I've been reading posts but have yet to post myself

[Guest guest]

The first time I heard of Interstitial Lung Disease was four years

ago. I was in the office of my third pulmonologist. He was giving

me his diagnosis and it went like this: You have ILD. The only way

I can find out which of the 150 to 200 different diseases you have is

to do a biopsy but since there is nothing medically that can be done

for any of them it is not worth the risks involved in biopsy.

I have since changed all my doctors but even though I am going to

well known and great doctors now, the basic attitudes is still the

same. I have been fighting breathing problems for over 6 years now

and a few months ago I was told that I just have to accept my chronic

illness for what it is and understand that I am never going to get

over it.

All that I have found out about this I have found on the net and that

appears to be not much at all. I have PFT's and 6 minute walks every

few months and have watched the numbers fall but little is said to me

about it.

Is this how most people are told about this or am I one of the lucky

few? I know a lot of things are unknowns because not much research

is out there but this is creepy if you ask me in the times of so many

medical advances elsewhere. Average people appear to think that this

is not that bad since they never heard of it before. In fact they

seem to take the attitude that since they never heard of it it is not

a real problem even.

[Guest guest]

Jeane,

I'm so sorry that you're not getting the attention and information that you deserve. Are you in the US? What part of the country are you in? You say you're going to "well known and great" doctors but I'm troubled that you aren't feeling as cared for as you should.

One thing I think we've all learned is that we have to be pro-active on our own behalf. It doesn't always come naturally but we must be our own advocate. Our lives are at stake. When you go to the doctor, go armed with a list of questions and don't leave his office until they are all answered to your satisfaction. Ask about pulmonary rehabilitation. A good rehab program can make a tremendous difference in our quality of life.

If you haven't you might want to consider getting yourself seen at a university medical center with an interstitial lung disease program. I have no idea where you are. If I did I'd be able to make a specific suggestion of where you might go.

Please stick with us. I know how isolating this disease can be but you are not alone!!

Beth-Moderator

Fibrotic NSIP 06/06 UCTD 06/08

"Take chances, make mistakes and get messy!"

Miss Frizzle

To: Breathe-Support Sent: Saturday, November 15, 2008 7:27:33 AMSubject: I've been reading posts but have yet to post myself

The first time I heard of Interstitial Lung Disease was four years ago. I was in the office of my third pulmonologist. He was giving me his diagnosis and it went like this: You have ILD. The only way I can find out which of the 150 to 200 different diseases you have is to do a biopsy but since there is nothing medically that can be done for any of them it is not worth the risks involved in biopsy.I have since changed all my doctors but even though I am going to well known and great doctors now, the basic attitudes is still the same. I have been fighting breathing problems for over 6 years now and a few months ago I was told that I just have to accept my chronic illness for what it is and understand that I am never going to get over it.All that I have found out about this I have found on the net and that appears to be not much at all. I have PFT's and 6 minute walks every few months and

have watched the numbers fall but little is said to me about it.Is this how most people are told about this or am I one of the lucky few? I know a lot of things are unknowns because not much research is out there but this is creepy if you ask me in the times of so many medical advances elsewhere. Average people appear to think that this is not that bad since they never heard of it before. In fact they seem to take the attitude that since they never heard of it it is not a real problem even.

[Guest guest]

Good Morning Beth I do want to consider getting myself seen at a

university medical center with an interstitial lung disease program. I

really like my guys but at this point I would like a second opinion. My

sister is a Dr. an is telling me to find a good teaching University and try

and get a complete workup of my lungs. When I'm really in trouble, as in

can't breath, if it weren't for my GP I can't get in to the PL for sometimes

three months. Do you have a starting point to get into one of these centers.

I'm less than 1 hr from s Hopkins and about 1 1/2 from Philadelphia. I

live just out side York, PA so either one would be great. Just head me in

the right direction, what are the right questions, what area of expertise am

I looking for. Anyone wanting to respond please do so. Use my personal email

address so I can find it fastprop@... Thanks to all and God Bless,

Bob

I've been reading posts but have yet to post

myself

The first time I heard of Interstitial Lung Disease was four years

ago. I was in the office of my third pulmonologist. He was giving

me his diagnosis and it went like this: You have ILD. The only way

I can find out which of the 150 to 200 different diseases you have is

to do a biopsy but since there is nothing medically that can be done

for any of them it is not worth the risks involved in biopsy.

I have since changed all my doctors but even though I am going to

well known and great doctors now, the basic attitudes is still the

same. I have been fighting breathing problems for over 6 years now

and a few months ago I was told that I just have to accept my chronic

illness for what it is and understand that I am never going to get

over it.

All that I have found out about this I have found on the net and that

appears to be not much at all. I have PFT's and 6 minute walks every

few months and have watched the numbers fall but little is said to me

about it.

Is this how most people are told about this or am I one of the lucky

few? I know a lot of things are unknowns because not much research

is out there but this is creepy if you ask me in the times of so many

medical advances elsewhere. Average people appear to think that this

is not that bad since they never heard of it before. In fact they

seem to take the attitude that since they never heard of it it is not

a real problem even.

[Guest guest]

Jeane

I'm in the Amen corner echoing MB. We learn much of what we know here,

but there are good pulmonologists out there. The communication between

you and yours does not indicate a pulmonologist knowledgeable in ILD's

or educating his patient properly. You really do need to see someone

with expertise in the field.

The statement that there is nothing medically that can be done for any

of them is false. Also, do you have any indication of a connective

tissue disease? Prednisone does help many with certain forms or with

ILD's secondary to connective tissue disease.

The choice of a biopsy (VATS) is yours, not the doctors. But you could

only make it if you had proper information before. Most of the time,

even from CT's they would have some greater information as to whether

they see honeycombing or inflammation or ground glass patterns.

So, thats two decisions most of us have to make but that we can't

without education. VATS or no VATS. Prednisone or no Prednisone. These

are very personal decisions based on our own individual situations.

There is no right nor wrong, just educated choices.

Now, you get to the right medical professionals and you'll come home for

the first time feeling you have some knowledge of whats going on and a

slight bit more control.

The other aspect where we're all try to assist and support you is living

with this disease. Yes, it may be terminal, but life is to start with.

Life can still be good. Some of us are more focused on enjoying life

than we ever were. Read the posts here. Do we sound like a group just

waiting to die? I hope not. I think we're a very alive group. We laugh.

We cope. We experience. We don't know how long we have in this

existence, but we help each other make the most of it.

>

> Jeane,

> I'm so sorry that you're not getting the attention and information

that you deserve. Are you in the US? What part of the country are you

in? You say you're going to " well known and great " doctors but I'm

troubled that you aren't feeling as cared for as you should.

>

> One thing I think we've all learned is that we have to be pro-active

on our own behalf. It doesn't always come naturally but we must be our

own advocate. Our lives are at stake. When you go to the doctor, go

armed with a list of questions and don't leave his office until they are

all answered to your satisfaction. Ask about pulmonary rehabilitation. A

good rehab program can make a tremendous difference in our quality of

life.

> If you haven't you might want to consider getting yourself seen at a

university medical center with an interstitial lung disease program. I

have no idea where you are. If I did I'd be able to make a specific

suggestion of where you might go.

> Please stick with us. I know how isolating this disease can be but you

are not alone!!

>

> Beth-Moderator

> Fibrotic NSIP 06/06 UCTD 06/08

>

> " Take chances, make mistakes and get messy! "

> Miss Frizzle

>

>

>

>

> ________________________________

> From: jeane7160 jeane7160@...

> To: Breathe-Support

> Sent: Saturday, November 15, 2008 7:27:33 AM

> Subject: I've been reading posts but have yet to

post myself

>

>

> The first time I heard of Interstitial Lung Disease was four years

> ago. I was in the office of my third pulmonologist. He was giving

> me his diagnosis and it went like this: You have ILD. The only way

> I can find out which of the 150 to 200 different diseases you have is

> to do a biopsy but since there is nothing medically that can be done

> for any of them it is not worth the risks involved in biopsy.

>

> I have since changed all my doctors but even though I am going to

> well known and great doctors now, the basic attitudes is still the

> same. I have been fighting breathing problems for over 6 years now

> and a few months ago I was told that I just have to accept my chronic

> illness for what it is and understand that I am never going to get

> over it.

>

> All that I have found out about this I have found on the net and that

> appears to be not much at all. I have PFT's and 6 minute walks every

> few months and have watched the numbers fall but little is said to me

> about it.

>

> Is this how most people are told about this or am I one of the lucky

> few? I know a lot of things are unknowns because not much research

> is out there but this is creepy if you ask me in the times of so many

> medical advances elsewhere. Average people appear to think that this

> is not that bad since they never heard of it before. In fact they

> seem to take the attitude that since they never heard of it it is not

> a real problem even.

>

[Guest guest]

Bob

I think we may have some here who have been to Hopkin's. I know

many who go there for autoimmune. We have some who go to University of

Pittsburgh. Others can speak far better of your area than I and we have

quite a Pennsylvania brigade. If you want to consider a longer drive for

a thorough evaluation and maintain a local pulmonologist as well, you

might consider Cornell (around three hours) or Duke (six hours but you

might get to meet MB so worth many more hours....).

Also, do not settle for a pulmonologist you can't see when you really

need them. We cannot afford delays in treatment when we have flareups of

any kind.

>

> Good Morning Beth I do want to consider getting myself seen at a

> university medical center with an interstitial lung disease program. I

> really like my guys but at this point I would like a second opinion.

My

> sister is a Dr. an is telling me to find a good teaching University

and try

> and get a complete workup of my lungs. When I'm really in trouble, as

in

> can't breath, if it weren't for my GP I can't get in to the PL for

sometimes

> three months. Do you have a starting point to get into one of these

centers.

> I'm less than 1 hr from s Hopkins and about 1 1/2 from

Philadelphia. I

> live just out side York, PA so either one would be great. Just head me

in

> the right direction, what are the right questions, what area of

expertise am

> I looking for. Anyone wanting to respond please do so. Use my personal

email

> address so I can find it fastprop@... Thanks to all and God Bless,

> Bob

>

> I've been reading posts but have yet to

post

> myself

>

>

>

> The first time I heard of Interstitial Lung Disease was four years

> ago. I was in the office of my third pulmonologist. He was giving

> me his diagnosis and it went like this: You have ILD. The only way

> I can find out which of the 150 to 200 different diseases you have is

> to do a biopsy but since there is nothing medically that can be done

> for any of them it is not worth the risks involved in biopsy.

>

> I have since changed all my doctors but even though I am going to

> well known and great doctors now, the basic attitudes is still the

> same. I have been fighting breathing problems for over 6 years now

> and a few months ago I was told that I just have to accept my chronic

> illness for what it is and understand that I am never going to get

> over it.

>

> All that I have found out about this I have found on the net and that

> appears to be not much at all. I have PFT's and 6 minute walks every

> few months and have watched the numbers fall but little is said to me

> about it.

>

> Is this how most people are told about this or am I one of the lucky

> few? I know a lot of things are unknowns because not much research

> is out there but this is creepy if you ask me in the times of so many

> medical advances elsewhere. Average people appear to think that this

> is not that bad since they never heard of it before. In fact they

> seem to take the attitude that since they never heard of it it is not

> a real problem even.

>

[Guest guest]

When all of this began 6 years ago it was exactly 31 days after my

second heart attack. I was fine one day and woke at 4 am with

serious breathing problems. The next year was spent with doctors

realizing that it was not my heart but since they started out saying

it was they tried to cover for their mistake. I really suffered from

abuse from the doctors but Pennsylvania stands by their bad doctors.

The fact that nurse collins did not kill me since i was there at that

time is enough to make me cringe.

I actually spent the next 4 years changing doctors and getting all

kinds of things told to me. The last set before the ones i go to now

were the ones who diagnosed ILD although the one prior to him had it

in some of my test results but did not tell me.

I can not really fault the ones I go to now as I came to them with

that diagnosis but without a lot of the tests that should have been

done. Consequently I spent over a month having 2 to 4 tests daily 3

times a week. I do not think they can believe the trash I went thru

before coming to them but the fact that there were few tests run and

contridictory double results written in the reports that were done

should tell them something. I do like my doctors I have now but I am

not sure of what to ask even. I go to Hershey which is a bit of a

trek especially in the winter but would not trade them. They are

part of the PA registry program.

I am so not waiting to die as well. I have this carton of toilet

paper with all the things my daughters did to me written on the

rolls. I refuse to die till my grandchildren have done each and

every one of those things to my daughters. Revenge comes to people

who become grandparents. And now 2 grandchildren are driving and the

mysterious dings and damage coming to their cars.

[Guest guest]

Jeane

I would think that Hershey, being a teaching hospital, is good place to go.

A lady in my neighborhood, had a cough for about 2 years before she got her diagnosis. She went from doctor to doctor. I forgot which one finally figured it out. Then this year they figured out that there was something with acid reflux and maybe a hernia, they did the surgery and her cough has decreased significantly.

Her dx was before mine, she is not on any meds for it and no oxygen.Pink Joyce IPF 3/06 Pennsylvania

Subject: Re: I've been reading posts but have yet to post myselfTo: Breathe-Support Date: Saturday, November 15, 2008, 12:50 PM

When all of this began 6 years ago it was exactly 31 days after my second heart attack. I was fine one day and woke at 4 am with serious breathing problems. The next year was spent with doctors realizing that it was not my heart but since they started out saying it was they tried to cover for their mistake. I really suffered from abuse from the doctors but Pennsylvania stands by their bad doctors. The fact that nurse collins did not kill me since i was there at that time is enough to make me cringe.I actually spent the next 4 years changing doctors and getting all kinds of things told to me. The last set before the ones i go to now were the ones who diagnosed ILD although the one prior to him had it in some of my test results but did not tell me. I can not really fault the ones I go to now as I came to them with that diagnosis but without a lot of the tests that should have been done.

Consequently I spent over a month having 2 to 4 tests daily 3 times a week. I do not think they can believe the trash I went thru before coming to them but the fact that there were few tests run and contridictory double results written in the reports that were done should tell them something. I do like my doctors I have now but I am not sure of what to ask even. I go to Hershey which is a bit of a trek especially in the winter but would not trade them. They are part of the PA registry program. I am so not waiting to die as well. I have this carton of toilet paper with all the things my daughters did to me written on the rolls. I refuse to die till my grandchildren have done each and every one of those things to my daughters. Revenge comes to people who become grandparents. And now 2 grandchildren are driving and the mysterious dings and damage coming to their

cars.

[Guest guest]

Bob

I live near Philadelphia

the pulmonary who made the diagnosis said that there was nothing he could do for me

he told me that Penn and Temple have departments that specialize in these diseases

So i went home, called Penn and took the first available doc.

don't remember how long it took for the appt, maybe a week or two

have been going to Penn ever since

i think Patti goes to Temple

rehab is at the local hospital--St --some people from rehab go to penn, some go to temple

you are also near Hershey, but don't know anything about them except that they are a teaching hospital

since you live closer to s Hopkins, that might be a good choice for you

just call, take the first available, if it doesn't work out, you can always change

I will tell you that in the beginning the PFT's and the high resolution CT scan were done at the local hospital

the doc at Penn wanted them repeated at Penn

very important--collect all of the data--scans, labs, pfts, etc. I keep mine in a loose leaf binder.

also carry a notebook whenever you go to the doctor and take notes, I use the notebook whenever I go to a doctor or dentist--i use it like a health diary--all phone calls, etcPink Joyce IPF 3/06 Pennsylvania

Subject: RE: I've been reading posts but have yet to post myselfTo: Breathe-Support Date: Saturday, November 15, 2008, 11:22 AM

Good Morning Beth I do want to consider getting myself seen at auniversity medical center with an interstitial lung disease program. Ireally like my guys but at this point I would like a second opinion. Mysister is a Dr. an is telling me to find a good teaching University and tryand get a complete workup of my lungs. When I'm really in trouble, as incan't breath, if it weren't for my GP I can't get in to the PL for sometimesthree months. Do you have a starting point to get into one of these centers.I'm less than 1 hr from s Hopkins and about 1 1/2 from Philadelphia. Ilive just out side York, PA so either one would be great. Just head me inthe right direction, what are the right questions, what area of expertise amI looking for. Anyone wanting to respond please do so. Use my personal emailaddress so I can find it fastprop (AT) comcast (DOT)

net Thanks to all and God Bless,Bob I've been reading posts but have yet to postmyselfThe first time I heard of Interstitial Lung Disease was four years ago. I was in the office of my third pulmonologist. He was giving me his diagnosis and it went like this: You have ILD. The only way I can find out which of the 150 to 200 different diseases you have is to do a biopsy but since there is nothing medically that can be done for any of them it is not worth the risks involved in biopsy.I have

since changed all my doctors but even though I am going to well known and great doctors now, the basic attitudes is still the same. I have been fighting breathing problems for over 6 years now and a few months ago I was told that I just have to accept my chronic illness for what it is and understand that I am never going to get over it.All that I have found out about this I have found on the net and that appears to be not much at all. I have PFT's and 6 minute walks every few months and have watched the numbers fall but little is said to me about it.Is this how most people are told about this or am I one of the lucky few? I know a lot of things are unknowns because not much research is out there but this is creepy if you ask me in the times of so many medical advances elsewhere. Average people appear to think that this is not that bad since they never heard of it before. In fact they

seem to take the attitude that since they never heard of it it is not a real problem even.

[Guest guest]

Jeane

we do have to become more politically active on our behalf

check out the Coalition for Pulmonary Fibrosis website

write your congress people requesting laws for funding for research, treatment, etc

when I was on social security disabilty and waiting for the 2 year waiting period for medicare to end, i wrote congressmen a few times to see if the two year waiting period could be waived--no such luck

when told about the lung biopsy, i was scared, but on a subsequent visit, the pulmonary did said that it wasn't necessary, there is no cure, just treatment to keep us going

he did refer me for transplant right away, just in case i would need it down the road

that's where i am now, the docs have recommended that i get listed, waiting to get insurance straightned out, plan on listing in 2009 and

extremely SCARED.Pink Joyce IPF 3/06 Pennsylvania

Subject: I've been reading posts but have yet to post myselfTo: Breathe-Support Date: Saturday, November 15, 2008, 7:27 AM

The first time I heard of Interstitial Lung Disease was four years ago. I was in the office of my third pulmonologist. He was giving me his diagnosis and it went like this: You have ILD. The only way I can find out which of the 150 to 200 different diseases you have is to do a biopsy but since there is nothing medically that can be done for any of them it is not worth the risks involved in biopsy.I have since changed all my doctors but even though I am going to well known and great doctors now, the basic attitudes is still the same. I have been fighting breathing problems for over 6 years now and a few months ago I was told that I just have to accept my chronic illness for what it is and understand that I am never going to get over it.All that I have found out about this I have found on the net and that appears to be not much at all. I have PFT's and 6 minute walks every few months and

have watched the numbers fall but little is said to me about it.Is this how most people are told about this or am I one of the lucky few? I know a lot of things are unknowns because not much research is out there but this is creepy if you ask me in the times of so many medical advances elsewhere. Average people appear to think that this is not that bad since they never heard of it before. In fact they seem to take the attitude that since they never heard of it it is not a real problem even.

[Guest guest]

Joyce/Bob

yep i go to temple lung center

also, i agree i make everyone give me copies right after the tests.

get my lab work etc. Always more slack when i have my testing for

the listing..

have a binder with separations for everything. even have discs from

cat scans.

also, take a friend with me to my appts and they take notes..

question: i thought the transplant listing tests were done yearly.

my surgeon says he will see me in 6 months. i had testing done in

Feb. and then again this month.. i am getting more confused.. okay

MB i know the brain cells. LOL patti

>

>

> Subject: RE: I've been reading posts but have

yet to post myself

> To: Breathe-Support

> Date: Saturday, November 15, 2008, 11:22 AM

>

>

>

>

>

>

> Good Morning Beth I do want to consider getting myself seen

at a

> university medical center with an interstitial lung disease

program. I

> really like my guys but at this point I would like a second

opinion. My

> sister is a Dr. an is telling me to find a good teaching

University and try

> and get a complete workup of my lungs. When I'm really in trouble,

as in

> can't breath, if it weren't for my GP I can't get in to the PL for

sometimes

> three months. Do you have a starting point to get into one of

these centers.

> I'm less than 1 hr from s Hopkins and about 1 1/2 from

Philadelphia. I

> live just out side York, PA so either one would be great. Just

head me in

> the right direction, what are the right questions, what area of

expertise am

> I looking for. Anyone wanting to respond please do so. Use my

personal email

> address so I can find it fastprop (AT) comcast (DOT) net Thanks to all and

God Bless,

> Bob

>

> I've been reading posts but have yet to

post

> myself

>

> The first time I heard of Interstitial Lung Disease was four years

> ago. I was in the office of my third pulmonologist. He was giving

> me his diagnosis and it went like this: You have ILD. The only way

> I can find out which of the 150 to 200 different diseases you have

is

> to do a biopsy but since there is nothing medically that can be

done

> for any of them it is not worth the risks involved in biopsy.

>

> I have since changed all my doctors but even though I am going to

> well known and great doctors now, the basic attitudes is still the

> same. I have been fighting breathing problems for over 6 years now

> and a few months ago I was told that I just have to accept my

chronic

> illness for what it is and understand that I am never going to get

> over it.

>

> All that I have found out about this I have found on the net and

that

> appears to be not much at all. I have PFT's and 6 minute walks

every

> few months and have watched the numbers fall but little is said to

me

> about it.

>

> Is this how most people are told about this or am I one of the

lucky

> few? I know a lot of things are unknowns because not much research

> is out there but this is creepy if you ask me in the times of so

many

> medical advances elsewhere. Average people appear to think that

this

> is not that bad since they never heard of it before. In fact they

> seem to take the attitude that since they never heard of it it is

not

> a real problem even.

>

[Guest guest]

Patti

the transplant doc who sees me every 6 months, or less now days, is not a surgeon

I have not had appointments with the transplant surgeons

that's a good question to add to my list for my next appt

plan on going to xmas party for Penn's lung transplant patients in december

2 years ago, when I went, the surgeons were there, but that will be a social meeting

that party, less than a year after my diagnosis was a very bright light at the end of the tunnel

i met many people with positive resultsPink Joyce IPF 3/06 Pennsylvania

Subject: Re: I've been reading posts but have yet to post myselfTo: Breathe-Support Date: Monday, November 17, 2008, 7:24 AM

Joyce/Bobyep i go to temple lung centeralso, i agree i make everyone give me copies right after the tests. get my lab work etc. Always more slack when i have my testing for the listing.. have a binder with separations for everything. even have discs from cat scans. also, take a friend with me to my appts and they take notes.. question: i thought the transplant listing tests were done yearly. my surgeon says he will see me in 6 months. i had testing done in Feb. and then again this month.. i am getting more confused.. okay MB i know the brain cells. LOL patti> > From: Bob <fastprop@.. .>> Subject: RE: I've been reading posts but have yet to post myself> To: Breathe-Support@ yahoogroups. com> Date: Saturday, November 15, 2008, 11:22 AM> > > > > > > Good Morning Beth I do want to consider getting myself seen at a> university medical

center with an interstitial lung disease program. I> really like my guys but at this point I would like a second opinion. My> sister is a Dr. an is telling me to find a good teaching University and try> and get a complete workup of my lungs. When I'm really in trouble, as in> can't breath, if it weren't for my GP I can't get in to the PL for sometimes> three months. Do you have a starting point to get into one of these centers.> I'm less than 1 hr from s Hopkins and about 1 1/2 from Philadelphia. I> live just out side York, PA so either one would be great. Just head me in> the right direction, what are the right questions, what area of expertise am> I looking for. Anyone wanting to respond please do so. Use my personal email> address so I can find it fastprop (AT) comcast (DOT) net Thanks to all and God Bless,> Bob> >

I've been reading posts but have yet to post> myself> > The first time I heard of Interstitial Lung Disease was four years > ago. I was in the office of my third pulmonologist. He was giving > me his diagnosis and it went like this: You have ILD. The only way > I can find out which of the 150 to 200 different diseases you have is > to do a biopsy but since there is nothing medically that can be done > for any of them it is not worth the risks involved in biopsy.> > I have since changed all my doctors but even though I am going to > well known and great doctors now, the basic attitudes is still the > same. I have been

fighting breathing problems for over 6 years now > and a few months ago I was told that I just have to accept my chronic > illness for what it is and understand that I am never going to get > over it.> > All that I have found out about this I have found on the net and that > appears to be not much at all. I have PFT's and 6 minute walks every > few months and have watched the numbers fall but little is said to me > about it.> > Is this how most people are told about this or am I one of the lucky > few? I know a lot of things are unknowns because not much research > is out there but this is creepy if you ask me in the times of so many > medical advances elsewhere. Average people appear to think that this > is not that bad since they never heard of it before. In fact they > seem to take the attitude that since they never

heard of it it is not > a real problem even.>

[Guest guest]

I am a couple of hours NW of phila I guess. About 1 1/2 hrs due North

of Hershey. While I would love meeting you all, I no longer am able to

drive much. As soon as I begin fatigueing my body and brain go into

this nice little shutdown. The last time I tried I went to town

and dropped someone off at work then came home 2 hrs rd. trip. Then I

went to my granddaughter's birthday party which is about 1 1/2 hrs.

From there I headed back to town. Before leaving my daughters

someone had to give me directions to town which I should have

known easily. By the time I got 2 miles from where I was going I was

not sure I was going to get the car there. It took me 4 tries to park

the car into the space. I have not been behind the wheel since.

>

> Jeane

> glad you finally found a group that you are comfortable with

> how far do you live from the Philadelphia area?

> there are a few of us and we are planning a meeting next Saturday

near PA turnpike exit

>

>

[Guest guest]

OH BRUCE, YOU said that... lol heehee Love & Prayers, PeggyFlorida,  IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." 

[Guest guest]

Hershey is a University teaching hospital. And My doctor is a

specialist in Interstitial Lung Diseases and a professor as well as

doctor. The problem about rehab here is there are none around that

even remotely understand interstitial problems and they all cookie

cutter rehab geared to COPD. Believe me I have been to them all and

they just get COPD. I live about 1 1/2 hrs from Hershey in goot

weather.

I do have an additional problem which is not actually pulmo but

affects my breathing bad. My sat drops to 73 at rest but as soon as

the alarm goes off and I move my brain triggeres the hyperventalation

mode. So basicly everything I do is recognized the same as having to

run from a burning building and really messes me up even more. My

lungs get filled with air they can't process and I have to work to

empty them so I can breath again.

On a positive note, I am getting my long needed mobility scooter next

week. After all this time I finally am giving in. I have been in

denial over the permantcy of this problem and always figured that

once I got to Hershey everything would be fixed. After two years of

going to them they told me that just aint so. Nice birthday present

from my doctors as the one spent almost the entire visit on my

birthday trying to get me to accept that fact. I've " cheated " death

in the past and just figured I would do it again. an again. and

again. My primary care was thrilled to death when I told him

yesterday that I was picking the scooter up next week. So much of my

medical are before getting to Hershey was so messed up and I just did

not believe anything anyone told me after a while.

I am totally secure in the doctors I go to now but have to admit that

it took a while for me to feel that way. Yes, I am pretty far down

the trail in terms of this and am slowing down more every day but I

still have my stubborn streak which I an too stubborn to give up.

But that is what has kept me going and I think will keep me going.

Jean

- In Breathe-Support , " Bruce Moreland "

wrote:

>

>

> Jeane

>

> I know in your initial posts you talked about doctors and new

doctors

> and one you did like, but I'm not at all comfortable with where you

seem

> to be in terms of the doctors and the ILD. Maybe its just things I

don't

> know. But when I hear the " nothing I can do " from them and don't

hear

> about oxygen or rehab or other things. If you haven't been, I'd

certain

> recommend a thorough exam and diagnosis at a teaching hospital.

>

> Why do I write this. I just read your post about the drive. That

> shouldn't be unless you are much much further along than I got from

your

> posts. Are you on oxygen? What levels? Because what you describe

sounds

> very much like too little oxygen, low saturation. Now the fact

you're

> posting at 4:30 AM could mean sleep issues too or instead.

>

> I understand your fear of driving after the experiences. But, I

> encourage you to find out why. I'm betting there are solutions which

> would make you able to drive but also feel better day to day. Thats

what

> we fight for, to be able to live the best we can. I do not have a

good

> feeling just from what I've read that you've been helped enough to

do

> that.

>

> I am part of the " have oxygen, will travel " brigade.

>

> >