Re: any of you could explain to me?

[Guest guest]

,

In fancy doc speak you have pulmonary fibrosis not asthma. Your responses to

your Pft are based on a Normal percentage for your height and weight so when

they say your DLCO is 17% of predicted, your ability to move gas into your lungs

is severely compromised. That said what are your oxygen needs? Do you do well

on those? Are these numbers much worse or only slightly worse than your last

PFT? If you go by what the doctors just write, its amazing that I can just get

up in the morning...to that I say screw you. I am not defined by a doctors

report.

Dyane, 54, Phoenix, IIP 02 now NSIP 09, Breast Cancer, Psoriasis,

Lipodermatosclerosis, Diabetes, and now a RA like autoimmune component, yadda

yadda yadda.

" Life is not a journey to the grave with intentions of arriving is a pretty,

well-preserved body, but rather to skid in broadside, thoroughly used up,

totally worn out, chocolate in one hand, Margaritas in the other, loudly

proclaiming " Holy **** What a ride! " . "

>

>

> From: Beth <mbmurtha (AT) yahoo (DOT) com>

> Subject: Re: new to the group

> To: Breathe-Support@ yahoogroups. com

> Date: Wednesday, December 2, 2009, 8:26 AM

>

>

>  

>

>

>

>

> Patti,

> Welcome to Breathe Support!! It's lousy that you have reason to look for a

group like this but I hope that you find it as helpful as I have over the last

3 and a half years.

> It sounds like you are doing all the right stuff. I'm so happy to hear you are

going to the University of Chicago. They have a great reputation and I'm certain

you will learn a ton regarding your own situation and how to approach the new

realities.

> Take things one step at a time and please don't panic about what you read on

the internet. I was diagnosed 3 and a half years ago and I'm in EXACTLY the same

condition I was at that time. I've been stable for 3 and a half years. We have a

member who is I think ten or twelve years out from diagnosis and is stable. So

the moral of the story is, there is no expiration date tatooed on your fanny!

> Please continue to read and ask whatever questions you have. We're here to

help!

>

>  

> Beth

> Moderator

> Fibrotic NSIP 06/06 Dermatomyositis 11/08

>  

>  

>

>

>

>

>

>

> From: emma0850 <napa73 (AT) comcast (DOT) net>

> To: Breathe-Support@ yahoogroups. com

> Sent: Tue, December 1, 2009 10:35:47 PM

> Subject: new to the group

>

>  

>

> Hello everyone.... .I just found this group today and I couldn't be happier to

find all of you! My name is Patti.....I am 59 yrs old and was told three years

ago that I had pulmonary fibrosis in my lung bases. I went through the entire

ordeal of test after test and was told it was so mild that they thought it may

have been there for years. I continued to do all the follow up tests each year

and until now it had remained unchanged. This past month the tests showed it has

now progressed to the entire lung area. My PFT had dropped from 79 to 60 in two

years. I still feel just fine but the doctor says it is time for Prednisone. I

have an appt in Chicago this month with a new doctor. I have read volumes of

information on the internet and most of the info I read just scares me. They

make it sound like a death sentence. Again I am so happy to find this group!!

>

[Guest guest]

It does say no change since May so you are no worse off than then.

> >

> >

> > From: Beth <mbmurtha (AT) yahoo (DOT) com>

> > Subject: Re: new to the group

> > To: Breathe-Support@ yahoogroups. com

> > Date: Wednesday, December 2, 2009, 8:26 AM

> >

> >

> >  

> >

> >

> >

> >

> > Patti,

> > Welcome to Breathe Support!! It's lousy that you have reason to look for a

group like this but I hope that you find it as helpful as I have over the last

3 and a half years.

> > It sounds like you are doing all the right stuff. I'm so happy to hear you

are going to the University of Chicago. They have a great reputation and I'm

certain you will learn a ton regarding your own situation and how to approach

the new realities.

> > Take things one step at a time and please don't panic about what you read on

the internet. I was diagnosed 3 and a half years ago and I'm in EXACTLY the same

condition I was at that time. I've been stable for 3 and a half years. We have a

member who is I think ten or twelve years out from diagnosis and is stable. So

the moral of the story is, there is no expiration date tatooed on your fanny!

> > Please continue to read and ask whatever questions you have. We're here to

help!

> >

> >  

> > Beth

> > Moderator

> > Fibrotic NSIP 06/06 Dermatomyositis 11/08

> >  

> >  

> >

> >

> >

> >

> >

> >

> > From: emma0850 <napa73 (AT) comcast (DOT) net>

> > To: Breathe-Support@ yahoogroups. com

> > Sent: Tue, December 1, 2009 10:35:47 PM

> > Subject: new to the group

> >

> >  

> >

> > Hello everyone.... .I just found this group today and I couldn't be happier

to find all of you! My name is Patti.....I am 59 yrs old and was told three

years ago that I had pulmonary fibrosis in my lung bases. I went through the

entire ordeal of test after test and was told it was so mild that they thought

it may have been there for years. I continued to do all the follow up tests each

year and until now it had remained unchanged. This past month the tests showed

it has now progressed to the entire lung area. My PFT had dropped from 79 to 60

in two years. I still feel just fine but the doctor says it is time for

Prednisone. I have an appt in Chicago this month with a new doctor. I have read

volumes of information on the internet and most of the info I read just scares

me. They make it sound like a death sentence. Again I am so happy to find this

group!!

> >

>

[Guest guest]

,

Essentially this means you have significant pulmonary fibrosis. PF is restrictive lung disease and it has affected your ability to move air into your lungs and once it's there has affected your lunts ability to transfer the oxygen from your lungs to your bloodstream. That's the 'diffusing capacity' they talk about. The "alveolar-capillary membrane units" they mention is the area in your lungs where oxygen is transferred. That's where the scarring is. It's damaged which reduces your lungs ability to get oxygen to your bloodstream.

Apparently during the test they gave you a breathing treatment with something like albuterol and then did the test again. This did not change the results of the test. That is not surprising with the kind of lung disease you have. The bronchodilators don't help me at all either.

This is all stuff you really knew already since you are getting ready for transplant. That wouldn't be happening if you didn't have severe lung disease. The good news is it says there has been no change since May of this year. So for the moment at least you are relatively stable.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Thu, December 3, 2009 5:04:15 PMSubject: any of you could explain to me?

In one of the pulmonary tests my doctor wreote this at the very bottom:

physician Review:

Severe restrictive disease indicated by total lung capacity reduced to 50% of predicted. marked decrease in pulmonary diffusing capacity to 17% of predicted indicates loss of functioning alveolar-capillary membrane units. After Broncodilator, values are esencially unchanged. (Note: a lack of response to broncodilators does not preclude their use). No significant change from May/09.

please explain to me!

From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Re: new to the groupTo: Breathe-Support@ yahoogroups. comDate: Wednesday, December 2, 2009, 8:26 AM

Patti,

Welcome to Breathe Support!! It's lousy that you have reason to look for a group like this but I hope that you find it as helpful as I have over the last 3 and a half years.

It sounds like you are doing all the right stuff. I'm so happy to hear you are going to the University of Chicago. They have a great reputation and I'm certain you will learn a ton regarding your own situation and how to approach the new realities.

Take things one step at a time and please don't panic about what you read on the internet. I was diagnosed 3 and a half years ago and I'm in EXACTLY the same condition I was at that time. I've been stable for 3 and a half years. We have a member who is I think ten or twelve years out from diagnosis and is stable. So the moral of the story is, there is no expiration date tatooed on your fanny!

Please continue to read and ask whatever questions you have. We're here to help!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: emma0850 <napa73 (AT) comcast (DOT) net>To: Breathe-Support@ yahoogroups. comSent: Tue, December 1, 2009 10:35:47 PMSubject: new to the group

Hello everyone.... .I just found this group today and I couldn't be happier to find all of you! My name is Patti.....I am 59 yrs old and was told three years ago that I had pulmonary fibrosis in my lung bases. I went through the entire ordeal of test after test and was told it was so mild that they thought it may have been there for years. I continued to do all the follow up tests each year and until now it had remained unchanged. This past month the tests showed it has now progressed to the entire lung area. My PFT had dropped from 79 to 60 in two years. I still feel just fine but the doctor says it is time for Prednisone. I have an appt in Chicago this month with a new doctor. I have read volumes of information on the internet and most of the info I read just scares me. They make it sound like a death sentence. Again I am so happy to find this

group!!

[Guest guest]

In addition to whatever programs you might find available in the US, I

had one other question. I apologize if my memory is poor but I believe

you do still have citizenship in Mexico so would their transplant

program be available to you? I don't know anything more about it

including number of transplants or quality or rate of survival but I

know there is a National Transplant System. I also know that while often

in the US we might tend to think our centers are best in some

procedures, that is not necessarily the case. This is why the rise to so

much Medical Tourism especially to India and the Philippines but I know

that many US citizens have gone to Mexico for procedures they couldn't

afford as well. I'm just tossing it out with little information but as a

possible source of assistance.

>

>

> From: Beth mbmurtha (AT) yahoo (DOT) com>

> Subject: Re: new to the group

> To: Breathe-Support@ yahoogroups. com

> Date: Wednesday, December 2, 2009, 8:26 AM

>

>

> Â

>

>

>

>

> Patti,

> Welcome to Breathe Support!! It's lousy that you have reason to

look for a group like this but I hope that you find it as helpful

as I have over the last 3 and a half years.

> It sounds like you are doing all the right stuff. I'm so happy to hear

you are going to the University of Chicago. They have a great reputation

and I'm certain you will learn a ton regarding your own situation and

how to approach the new realities.

> Take things one step at a time and please don't panic about what you

read on the internet. I was diagnosed 3 and a half years ago and I'm in

EXACTLY the same condition I was at that time. I've been stable for 3

and a half years. We have a member who is I think ten or twelve years

out from diagnosis and is stable. So the moral of the story is, there is

no expiration date tatooed on your fanny!

> Please continue to read and ask whatever questions you have. We're

here to help!

>

> Â

> Beth

> Moderator

> Fibrotic NSIP 06/06 Dermatomyositis 11/08

> Â

> Â

>

>

>

>

>

>

> From: emma0850 napa73 (AT) comcast (DOT) net>

> To: Breathe-Support@ yahoogroups. com

> Sent: Tue, December 1, 2009 10:35:47 PM

> Subject: new to the group

>

> Â

>

> Hello everyone.... .I just found this group today and I couldn't be

happier to find all of you! My name is Patti.....I am 59 yrs old and was

told three years ago that I had pulmonary fibrosis in my lung bases. I

went through the entire ordeal of test after test and was told it was so

mild that they thought it may have been there for years. I continued to

do all the follow up tests each year and until now it had remained

unchanged. This past month the tests showed it has now progressed to the

entire lung area. My PFT had dropped from 79 to 60 in two years. I still

feel just fine but the doctor says it is time for Prednisone. I have an

appt in Chicago this month with a new doctor. I have read volumes of

information on the internet and most of the info I read just scares me.

They make it sound like a death sentence. Again I am so happy to find

this group!!

>

[Guest guest]

That's exactly what i have been telling my husband since I was diagnosed, I told him we needed to go back to Mexico, but he was born here and he doesn't want to move or sell his house.

Besides, the waiting time in Mexico for a transplant is a lot longer than here, still I could have had medical attention there for much less money than what we are paying here, they have great national treatment centers (goverment operated) and of course the private medical practice which is good too (but expensive for a person that makes pesos only).

My husband is on Social security and our money is very limited.

I told my husband that if the doctors here tell me that I there is nothing else they can do for me, I will simply go back to my country and just rest on a hamac by the beach to die there, among my people, he could stay here if he wants.

Subject: Re: any of you could explain to me?To: Breathe-Support Date: Thursday, December 3, 2009, 8:08 PM

In addition to whatever programs you might find available in the US, Ihad one other question. I apologize if my memory is poor but I believeyou do still have citizenship in Mexico so would their transplantprogram be available to you? I don't know anything more about itincluding number of transplants or quality or rate of survival but Iknow there is a National Transplant System. I also know that while oftenin the US we might tend to think our centers are best in someprocedures, that is not necessarily the case. This is why the rise to somuch Medical Tourism especially to India and the Philippines but I knowthat many US citizens have gone to Mexico for procedures they couldn'tafford as well. I'm just tossing it out with little information but as apossible source of assistance.>>> From: Beth mbmurtha (AT) yahoo (DOT) com>> Subject: Re: new to the group> To: Breathe-Support@ yahoogroups. com> Date: Wednesday, December 2, 2009, 8:26 AM>>> Â>>>>> Patti,> Welcome to Breathe Support!! It's lousy that you have reason tolook for a group like this but I hope that you find it as helpfulas I have over the last 3 and a half years.> It sounds like you are doing all the right stuff. I'm so happy to hearyou are going to the University of Chicago. They have a great reputationand I'm certain you will learn a ton regarding your own situation andhow to approach the new realities.> Take things one step at a time and please don't panic about what youread on the internet. I was diagnosed 3 and a half years ago and I'm

inEXACTLY the same condition I was at that time. I've been stable for 3and a half years. We have a member who is I think ten or twelve yearsout from diagnosis and is stable. So the moral of the story is, there isno expiration date tatooed on your fanny!> Please continue to read and ask whatever questions you have. We'rehere to help!>> Â> Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> Â> Â>>>>>>> From: emma0850 napa73 (AT) comcast (DOT) net>> To: Breathe-Support@ yahoogroups. com> Sent: Tue, December 1, 2009 10:35:47 PM> Subject: new to the group>> Â>> Hello everyone.... .I just found this group today and I couldn't behappier to find all of you! My name is Patti.....I am 59 yrs old and wastold three years ago that I had pulmonary fibrosis in

my lung bases. Iwent through the entire ordeal of test after test and was told it was somild that they thought it may have been there for years. I continued todo all the follow up tests each year and until now it had remainedunchanged. This past month the tests showed it has now progressed to theentire lung area. My PFT had dropped from 79 to 60 in two years. I stillfeel just fine but the doctor says it is time for Prednisone. I have anappt in Chicago this month with a new doctor. I have read volumes ofinformation on the internet and most of the info I read just scares me.They make it sound like a death sentence. Again I am so happy to findthis group!!>

[Guest guest]

Bruce, You are a wealth of information. What is your background?

Gale

To: Breathe-Support Sent: Thu, December 3, 2009 8:08:54 PMSubject: Re: any of you could explain to me?

In addition to whatever programs you might find available in the US, Ihad one other question. I apologize if my memory is poor but I believeyou do still have citizenship in Mexico so would their transplantprogram be available to you? I don't know anything more about itincluding number of transplants or quality or rate of survival but Iknow there is a National Transplant System. I also know that while oftenin the US we might tend to think our centers are best in someprocedures, that is not necessarily the case. This is why the rise to somuch Medical Tourism especially to India and the Philippines but I knowthat many US citizens have gone to Mexico for procedures they couldn'tafford as well. I'm just tossing it out with little information but as apossible source of assistance.>>> From: Beth mbmurtha (AT) yahoo (DOT) com>> Subject: Re: new to the group> To: Breathe-Support@ yahoogroups. com> Date: Wednesday, December 2, 2009, 8:26 AM>>> Â>>>>> Patti,> Welcome to Breathe Support!! It's lousy that you have reason tolook for a group like this but I hope that you find it as helpfulas I have over the last 3 and a half years.> It sounds like you are doing all the right stuff. I'm so happy to hearyou are going to the University of Chicago. They have a great reputationand I'm certain you will learn a ton regarding your own situation andhow to approach the new realities.> Take things one step at a time and please don't panic about what youread on the internet. I was diagnosed 3 and a half years ago and I'm inEXACTLY the same condition I was at that time.. I've

been stable for 3and a half years. We have a member who is I think ten or twelve yearsout from diagnosis and is stable. So the moral of the story is, there isno expiration date tatooed on your fanny!> Please continue to read and ask whatever questions you have. We'rehere to help!>> Â> Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> Â> Â>>>>>>> From: emma0850 napa73 (AT) comcast (DOT) net>> To: Breathe-Support@ yahoogroups. com> Sent: Tue, December 1, 2009 10:35:47 PM> Subject: new to the group>> Â>> Hello everyone.... .I just found this group today and I couldn't behappier to find all of you! My name is Patti.....I am 59 yrs old and wastold three years ago that I had pulmonary fibrosis in my lung bases. Iwent through the entire ordeal of test

after test and was told it was somild that they thought it may have been there for years. I continued todo all the follow up tests each year and until now it had remainedunchanged. This past month the tests showed it has now progressed to theentire lung area. My PFT had dropped from 79 to 60 in two years. I stillfeel just fine but the doctor says it is time for Prednisone. I have anappt in Chicago this month with a new doctor. I have read volumes ofinformation on the internet and most of the info I read just scares me.They make it sound like a death sentence. Again I am so happy to findthis group!!>

[Guest guest]

Gale

Rather diverse accounting and Corporate background but some of my

specialties were troubleshooting and problem solving as well as business

turnarounds so gained a lot of experience at walking into new and

different situations and learning. Guess sometimes that comes in handy.

But other than that if I was starting over would certainly choose a very

very different career path and personal path for my life.

> >

> >

> > From: Beth mbmurtha (AT) yahoo (DOT) com>

> > Subject: Re: new to the group

> > To: Breathe-Support@ yahoogroups. com

> > Date: Wednesday, December 2, 2009, 8:26 AM

> >

> >

> > Â

> >

> >

> >

> >

> > Patti,

> > Welcome to Breathe Support!! It's lousy that you have reason

to

> look for a group like this but I hope that you find it asÂ

helpful

> as I have over the last 3 and a half years.

> > It sounds like you are doing all the right stuff. I'm so happy to

hear

> you are going to the University of Chicago. They have a great

reputation

> and I'm certain you will learn a ton regarding your own situation and

> how to approach the new realities.

> > Take things one step at a time and please don't panic about what you

> read on the internet. I was diagnosed 3 and a half years ago and I'm

in

> EXACTLY the same condition I was at that time. I've been stable for 3

> and a half years. We have a member who is I think ten or twelve years

> out from diagnosis and is stable. So the moral of the story is, there

is

> no expiration date tatooed on your fanny!

> > Please continue to read and ask whatever questions you have. We're

> here to help!

> >

> > Â

> > Beth

> > Moderator

> > Fibrotic NSIP 06/06 Dermatomyositis 11/08

> > Â

> > Â

> >

> >

> >

> >

> >

> >

> > From: emma0850 napa73 (AT) comcast (DOT) net>

> > To: Breathe-Support@ yahoogroups. com

> > Sent: Tue, December 1, 2009 10:35:47 PM

> > Subject: new to the group

> >

> > Â

> >

> > Hello everyone.... .I just found this group today and I couldn't be

> happier to find all of you! My name is Patti.....I am 59 yrs old and

was

> told three years ago that I had pulmonary fibrosis in my lung bases. I

> went through the entire ordeal of test after test and was told it was

so

> mild that they thought it may have been there for years. I continued

to

> do all the follow up tests each year and until now it had remained

> unchanged. This past month the tests showed it has now progressed to

the

> entire lung area. My PFT had dropped from 79 to 60 in two years. I

still

> feel just fine but the doctor says it is time for Prednisone.. I have

an

> appt in Chicago this month with a new doctor. I have read volumes of

> information on the internet and most of the info I read just scares

me.

> They make it sound like a death sentence. Again I am so happy to find

> this group!!

> >

>

[Guest guest]

laura

i have heard about a lot of u.s. citizens who have retired to mexico because it is cheaper to live

in fact, we have friends, who moved there about 3 years ago, rented for one year, and continue to renew their lease

they come back to the house in philly twice a year -- her children live in the house

they really like where they live in Mexico and tell us how much less expensive it is

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Re: any of you could explain to me?To: Breathe-Support Date: Thursday, December 3, 2009, 10:27 PM

That's exactly what i have been telling my husband since I was diagnosed, I told him we needed to go back to Mexico, but he was born here and he doesn't want to move or sell his house.

Besides, the waiting time in Mexico for a transplant is a lot longer than here, still I could have had medical attention there for much less money than what we are paying here, they have great national treatment centers (goverment operated) and of course the private medical practice which is good too (but expensive for a person that makes pesos only).

My husband is on Social security and our money is very limited.

I told my husband that if the doctors here tell me that I there is nothing else they can do for me, I will simply go back to my country and just rest on a hamac by the beach to die there, among my people, he could stay here if he wants.

From: Bruce <brucemoreland@ gmail.com>Subject: Re: any of you could explain to me?To: Breathe-Support@ yahoogroups. comDate: Thursday, December 3, 2009, 8:08 PM

In addition to whatever programs you might find available in the US, Ihad one other question. I apologize if my memory is poor but I believeyou do still have citizenship in Mexico so would their transplantprogram be available to you? I don't know anything more about itincluding number of transplants or quality or rate of survival but Iknow there is a National Transplant System. I also know that while oftenin the US we might tend to think our centers are best in someprocedures, that is not necessarily the case. This is why the rise to somuch Medical Tourism especially to India and the Philippines but I knowthat many US citizens have gone to Mexico for procedures they couldn'tafford as well. I'm just tossing it out with little information but as apossible source of assistance.>>> From: Beth mbmurtha (AT) yahoo (DOT) com>>

Subject: Re: new to the group> To: Breathe-Support@ yahoogroups. com> Date: Wednesday, December 2, 2009, 8:26 AM>>> Â>>>>> Patti,> Welcome to Breathe Support!! It's lousy that you have reason tolook for a group like this but I hope that you find it as helpfulas I have over the last 3 and a half years.> It sounds like you are doing all the right stuff. I'm so happy to hearyou are going to the University of Chicago. They have a great reputationand I'm certain you will learn a ton regarding your own situation andhow to approach the new realities.> Take things one step at a time and please don't panic about what youread on the internet. I was diagnosed 3 and a half years ago and I'm inEXACTLY the same condition I was at that time. I've been stable for 3and a half years. We have a member who is I think ten or

twelve yearsout from diagnosis and is stable. So the moral of the story is, there isno expiration date tatooed on your fanny!> Please continue to read and ask whatever questions you have. We'rehere to help!>> Â> Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> Â> Â>>>>>>> From: emma0850 napa73 (AT) comcast (DOT) net>> To: Breathe-Support@ yahoogroups. com> Sent: Tue, December 1, 2009 10:35:47 PM> Subject: new to the group>> Â>> Hello everyone.... .I just found this group today and I couldn't behappier to find all of you! My name is Patti.....I am 59 yrs old and wastold three years ago that I had pulmonary fibrosis in my lung bases. Iwent through the entire ordeal of test after test and was told it was somild that they thought it may have been

there for years. I continued todo all the follow up tests each year and until now it had remainedunchanged. This past month the tests showed it has now progressed to theentire lung area. My PFT had dropped from 79 to 60 in two years. I stillfeel just fine but the doctor says it is time for Prednisone. I have anappt in Chicago this month with a new doctor. I have read volumes ofinformation on the internet and most of the info I read just scares me.They make it sound like a death sentence. Again I am so happy to findthis group!!>