Re: Just been diagnosed with PF

[Guest guest]

Ray

All the above. It makes sense to have a local pulmonologist but also to

go to Duke for a complete diagnostic workup and treatment plan. Duke

will have much more experience with PF while you will need a local

doctor you can depend on for issues and problems that occur on a routine

basis such as infections or other concerns you might have. They should

be able to work together and no good pulmonologist would at all be

bothered by you wanting an opinion from Duke.

>

> My father and brother both died of lung cancer associated with

asbestosis. I have also been around the stuff so I made sure I had

x-rays done every year or so because of my concern to also develop lung

cancer. My x-rays back in 2004 noted some slight scarring but nothing

significant was noted in the write up. In 2005 the x-ray write up

mentioned nothing about my lungs. In 2007 the reader of the x-ray noted

the interstitial lung desease with little progression from what was seen

on the 2005 x-ray. (Now the 2005 write up mentioned nothing of a lung

desease.) In June 2008 again the x-ray write up mentioned the

interstitial lung desease with little growth from 2005 but could not

compare to the 2007 because the x-ray was not in the jacket. Through all

of this my primary care physician mentioned nothing. Well, my primary

care retired and I have been having this dry cough for a year and the

meds were not working. Therefore, I had to find another primary care

physician who immediately read my charts and said he saw some fibrosis

on the x-ray. He sends me for a CT Scan which the results were pulmonary

fibrosis in moderate stage. My breathing test was 64 percent. I am in

the Norfolk, VA area and any experienced pulmonary doctor is backlogged

two to three months. I can see a new guy in a week. I have had thoughts

of maybe going to Duke's Interstitual Lung Desease Dept and bypassing

the local guys. I am new to all of this and had never hear of pulmonary

fibrosis. To say I am concerned is an understatement and really don't

know if I should just go to Duke which can see me in a couple weeks, see

a new pulmonary doctor locally next week, or wait two to three months

and see a pulmonary doctor with some years under his belt. Any help or

input from this community would be a blessing right now.

>

[Guest guest]

Ray

All the above. It makes sense to have a local pulmonologist but also to

go to Duke for a complete diagnostic workup and treatment plan. Duke

will have much more experience with PF while you will need a local

doctor you can depend on for issues and problems that occur on a routine

basis such as infections or other concerns you might have. They should

be able to work together and no good pulmonologist would at all be

bothered by you wanting an opinion from Duke.

>

> My father and brother both died of lung cancer associated with

asbestosis. I have also been around the stuff so I made sure I had

x-rays done every year or so because of my concern to also develop lung

cancer. My x-rays back in 2004 noted some slight scarring but nothing

significant was noted in the write up. In 2005 the x-ray write up

mentioned nothing about my lungs. In 2007 the reader of the x-ray noted

the interstitial lung desease with little progression from what was seen

on the 2005 x-ray. (Now the 2005 write up mentioned nothing of a lung

desease.) In June 2008 again the x-ray write up mentioned the

interstitial lung desease with little growth from 2005 but could not

compare to the 2007 because the x-ray was not in the jacket. Through all

of this my primary care physician mentioned nothing. Well, my primary

care retired and I have been having this dry cough for a year and the

meds were not working. Therefore, I had to find another primary care

physician who immediately read my charts and said he saw some fibrosis

on the x-ray. He sends me for a CT Scan which the results were pulmonary

fibrosis in moderate stage. My breathing test was 64 percent. I am in

the Norfolk, VA area and any experienced pulmonary doctor is backlogged

two to three months. I can see a new guy in a week. I have had thoughts

of maybe going to Duke's Interstitual Lung Desease Dept and bypassing

the local guys. I am new to all of this and had never hear of pulmonary

fibrosis. To say I am concerned is an understatement and really don't

know if I should just go to Duke which can see me in a couple weeks, see

a new pulmonary doctor locally next week, or wait two to three months

and see a pulmonary doctor with some years under his belt. Any help or

input from this community would be a blessing right now.

>

[Guest guest]

Ray

All the above. It makes sense to have a local pulmonologist but also to

go to Duke for a complete diagnostic workup and treatment plan. Duke

will have much more experience with PF while you will need a local

doctor you can depend on for issues and problems that occur on a routine

basis such as infections or other concerns you might have. They should

be able to work together and no good pulmonologist would at all be

bothered by you wanting an opinion from Duke.

>

> My father and brother both died of lung cancer associated with

asbestosis. I have also been around the stuff so I made sure I had

x-rays done every year or so because of my concern to also develop lung

cancer. My x-rays back in 2004 noted some slight scarring but nothing

significant was noted in the write up. In 2005 the x-ray write up

mentioned nothing about my lungs. In 2007 the reader of the x-ray noted

the interstitial lung desease with little progression from what was seen

on the 2005 x-ray. (Now the 2005 write up mentioned nothing of a lung

desease.) In June 2008 again the x-ray write up mentioned the

interstitial lung desease with little growth from 2005 but could not

compare to the 2007 because the x-ray was not in the jacket. Through all

of this my primary care physician mentioned nothing. Well, my primary

care retired and I have been having this dry cough for a year and the

meds were not working. Therefore, I had to find another primary care

physician who immediately read my charts and said he saw some fibrosis

on the x-ray. He sends me for a CT Scan which the results were pulmonary

fibrosis in moderate stage. My breathing test was 64 percent. I am in

the Norfolk, VA area and any experienced pulmonary doctor is backlogged

two to three months. I can see a new guy in a week. I have had thoughts

of maybe going to Duke's Interstitual Lung Desease Dept and bypassing

the local guys. I am new to all of this and had never hear of pulmonary

fibrosis. To say I am concerned is an understatement and really don't

know if I should just go to Duke which can see me in a couple weeks, see

a new pulmonary doctor locally next week, or wait two to three months

and see a pulmonary doctor with some years under his belt. Any help or

input from this community would be a blessing right now.

>

[Guest guest]

Hi Ray, I was diagnosed in 6/2004 and have watched the members of this board go through so much trying to find a Doc. theylike and trust that will talk to them and answer the million questions you have--we all had the same ones. If you can get to Duke do it... A University Teaching Hosp. is the best. We have members that go to Duke and love it and are getting excellent care. Our moderator Beth goes to Duke and just totally pleased with her care and treatment.I go to Shands at the University of Florida and am in love with the Doc's and all the people that do the testing. One day testing then see the Doc at the end of the day WITH all the test results. Ya can't beat that..  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."  My father and brother both died of lung cancer associated with asbestosis. I have also been around the stuff so I made sure I had x-rays done every year or so because of my concern to also develop lung cancer. My x-rays back in 2004 noted some slight scarring but nothing significant was noted in the write up. In 2005 the x-ray write up mentioned nothing about my lungs. In 2007 the reader of the x-ray noted the interstitial lung desease with little progression from what was seen on the 2005 x-ray. (Now the 2005 write up mentioned nothing of a lung desease.) In June 2008 again the x-ray write up mentioned the interstitial lung desease with little growth from 2005 but could not compare to the 2007 because the x-ray was not in the jacket. Through all of this my primary care physician mentioned nothing. Well, my primary care retired and I have been having this dry cough for a year and the meds were not working. Therefore, I had to find another primary care physician who immediately read my charts and said he saw some fibrosis on the x-ray. He sends me for a CT Scan which the results were pulmonary fibrosis in moderate stage. My breathing test was 64 percent. I am in the Norfolk, VA area and any experienced pulmonary doctor is backlogged two to three months. I can see a new guy in a week. I have had thoughts of maybe going to Duke's Interstitual Lung Desease Dept and bypassing the local guys. I am new to all of this and had never hear of pulmonary fibrosis. To say I am concerned is an understatement and really don't know if I should just go to Duke which can see me in a couple weeks, see a new pulmonary doctor locally next week, or wait two to three months and see a pulmonary doctor with some years under his belt. Any help or input from this community would be a blessing right now.

[Guest guest]

Hi Ray,

My name is , I am 53 and was diagnosed with sarcoidosis and advanced pulmonary fibrosis after a lung biopsy in March 3/06. My mother (a nonsmoker)died of lung cancer and I too went for frequent xrays. The radiologist told me in 2001 that I had some slight scarring possibly from previous pneumonia and then nothing until 2006 when I was told I had advanced pulmonary fibrosis! First, I am sorry you have had to join our group, second, I am glad you found us! The fortunate thing about this disease is that it isn't going to take you tomorrow so you have plenty of time to find the right doctor. I had a local doctor and switched to the University of San Diego because I felt they were more up to date with treatments. I live about an hour from the hospital, but I feel it is worth the drive. I would recommend that you start with Duke and then find a local

doctor who is willing to work under Duke's direction. That way you can go to Duke once or twice a year for your main tests and do follow ups closer to home.

Last, this is a serious disease but it affects all of us differently. Some of us are on medication, some use oxygen, some use nothing at all and live for years and years with out progression of the scarring. Welcome to our group Ray, I know you will find answers and friendship here. God bless you-

R. (53) Sarcoid/PF 3/2006 Carlsbad, California

Subject: Just been diagnosed with PFTo: Breathe-Support Date: Tuesday, March 10, 2009, 9:39 AM

My father and brother both died of lung cancer associated with asbestosis. I have also been around the stuff so I made sure I had x-rays done every year or so because of my concern to also develop lung cancer. My x-rays back in 2004 noted some slight scarring but nothing significant was noted in the write up. In 2005 the x-ray write up mentioned nothing about my lungs. In 2007 the reader of the x-ray noted the interstitial lung desease with little progression from what was seen on the 2005 x-ray. (Now the 2005 write up mentioned nothing of a lung desease.) In June 2008 again the x-ray write up mentioned the interstitial lung desease with little growth from 2005 but could not compare to the 2007 because the x-ray was not in the jacket. Through all of this my primary care physician mentioned nothing. Well, my primary care retired and I have been having this dry cough for a year and the meds were not working. Therefore, I had to find another primary

care physician who immediately read my charts and said he saw some fibrosis on the x-ray. He sends me for a CT Scan which the results were pulmonary fibrosis in moderate stage. My breathing test was 64 percent. I am in the Norfolk, VA area and any experienced pulmonary doctor is backlogged two to three months. I can see a new guy in a week. I have had thoughts of maybe going to Duke's Interstitual Lung Desease Dept and bypassing the local guys. I am new to all of this and had never hear of pulmonary fibrosis. To say I am concerned is an understatement and really don't know if I should just go to Duke which can see me in a couple weeks, see a new pulmonary doctor locally next week, or wait two to three months and see a pulmonary doctor with some years under his belt. Any help or input from this community would be a blessing right now.

[Guest guest]

Hi Ray,

My name is , I am 53 and was diagnosed with sarcoidosis and advanced pulmonary fibrosis after a lung biopsy in March 3/06. My mother (a nonsmoker)died of lung cancer and I too went for frequent xrays. The radiologist told me in 2001 that I had some slight scarring possibly from previous pneumonia and then nothing until 2006 when I was told I had advanced pulmonary fibrosis! First, I am sorry you have had to join our group, second, I am glad you found us! The fortunate thing about this disease is that it isn't going to take you tomorrow so you have plenty of time to find the right doctor. I had a local doctor and switched to the University of San Diego because I felt they were more up to date with treatments. I live about an hour from the hospital, but I feel it is worth the drive. I would recommend that you start with Duke and then find a local

doctor who is willing to work under Duke's direction. That way you can go to Duke once or twice a year for your main tests and do follow ups closer to home.

Last, this is a serious disease but it affects all of us differently. Some of us are on medication, some use oxygen, some use nothing at all and live for years and years with out progression of the scarring. Welcome to our group Ray, I know you will find answers and friendship here. God bless you-

R. (53) Sarcoid/PF 3/2006 Carlsbad, California

Subject: Just been diagnosed with PFTo: Breathe-Support Date: Tuesday, March 10, 2009, 9:39 AM

My father and brother both died of lung cancer associated with asbestosis. I have also been around the stuff so I made sure I had x-rays done every year or so because of my concern to also develop lung cancer. My x-rays back in 2004 noted some slight scarring but nothing significant was noted in the write up. In 2005 the x-ray write up mentioned nothing about my lungs. In 2007 the reader of the x-ray noted the interstitial lung desease with little progression from what was seen on the 2005 x-ray. (Now the 2005 write up mentioned nothing of a lung desease.) In June 2008 again the x-ray write up mentioned the interstitial lung desease with little growth from 2005 but could not compare to the 2007 because the x-ray was not in the jacket. Through all of this my primary care physician mentioned nothing. Well, my primary care retired and I have been having this dry cough for a year and the meds were not working. Therefore, I had to find another primary

care physician who immediately read my charts and said he saw some fibrosis on the x-ray. He sends me for a CT Scan which the results were pulmonary fibrosis in moderate stage. My breathing test was 64 percent. I am in the Norfolk, VA area and any experienced pulmonary doctor is backlogged two to three months. I can see a new guy in a week. I have had thoughts of maybe going to Duke's Interstitual Lung Desease Dept and bypassing the local guys. I am new to all of this and had never hear of pulmonary fibrosis. To say I am concerned is an understatement and really don't know if I should just go to Duke which can see me in a couple weeks, see a new pulmonary doctor locally next week, or wait two to three months and see a pulmonary doctor with some years under his belt. Any help or input from this community would be a blessing right now.

[Guest guest]

Hi Ray,

My name is , I am 53 and was diagnosed with sarcoidosis and advanced pulmonary fibrosis after a lung biopsy in March 3/06. My mother (a nonsmoker)died of lung cancer and I too went for frequent xrays. The radiologist told me in 2001 that I had some slight scarring possibly from previous pneumonia and then nothing until 2006 when I was told I had advanced pulmonary fibrosis! First, I am sorry you have had to join our group, second, I am glad you found us! The fortunate thing about this disease is that it isn't going to take you tomorrow so you have plenty of time to find the right doctor. I had a local doctor and switched to the University of San Diego because I felt they were more up to date with treatments. I live about an hour from the hospital, but I feel it is worth the drive. I would recommend that you start with Duke and then find a local

doctor who is willing to work under Duke's direction. That way you can go to Duke once or twice a year for your main tests and do follow ups closer to home.

Last, this is a serious disease but it affects all of us differently. Some of us are on medication, some use oxygen, some use nothing at all and live for years and years with out progression of the scarring. Welcome to our group Ray, I know you will find answers and friendship here. God bless you-

R. (53) Sarcoid/PF 3/2006 Carlsbad, California

Subject: Just been diagnosed with PFTo: Breathe-Support Date: Tuesday, March 10, 2009, 9:39 AM

My father and brother both died of lung cancer associated with asbestosis. I have also been around the stuff so I made sure I had x-rays done every year or so because of my concern to also develop lung cancer. My x-rays back in 2004 noted some slight scarring but nothing significant was noted in the write up. In 2005 the x-ray write up mentioned nothing about my lungs. In 2007 the reader of the x-ray noted the interstitial lung desease with little progression from what was seen on the 2005 x-ray. (Now the 2005 write up mentioned nothing of a lung desease.) In June 2008 again the x-ray write up mentioned the interstitial lung desease with little growth from 2005 but could not compare to the 2007 because the x-ray was not in the jacket. Through all of this my primary care physician mentioned nothing. Well, my primary care retired and I have been having this dry cough for a year and the meds were not working. Therefore, I had to find another primary

care physician who immediately read my charts and said he saw some fibrosis on the x-ray. He sends me for a CT Scan which the results were pulmonary fibrosis in moderate stage. My breathing test was 64 percent. I am in the Norfolk, VA area and any experienced pulmonary doctor is backlogged two to three months. I can see a new guy in a week. I have had thoughts of maybe going to Duke's Interstitual Lung Desease Dept and bypassing the local guys. I am new to all of this and had never hear of pulmonary fibrosis. To say I am concerned is an understatement and really don't know if I should just go to Duke which can see me in a couple weeks, see a new pulmonary doctor locally next week, or wait two to three months and see a pulmonary doctor with some years under his belt. Any help or input from this community would be a blessing right now.

[Guest guest]

Ray, get thee to Duke as fast as you can.. I did and I am so happy that I did. They know more than most all other pulmos because they specialize in IPF and its many transmutations. Most of the local pulmos do not see interstial lumg diseases frequently enough to know what they are looking at or what to do if they do know. Beth will probably tell you better than I the advantages of going to Duke.

I'm moving to NC this summer just so I can go to Duke more fequently. Jack79/IPF - UIP/dx06/05 Maine

To: Breathe-Support Sent: Tuesday, March 10, 2009 12:39:27 PMSubject: Just been diagnosed with PF

My father and brother both died of lung cancer associated with asbestosis. I have also been around the stuff so I made sure I had x-rays done every year or so because of my concern to also develop lung cancer. My x-rays back in 2004 noted some slight scarring but nothing significant was noted in the write up. In 2005 the x-ray write up mentioned nothing about my lungs. In 2007 the reader of the x-ray noted the interstitial lung desease with little progression from what was seen on the 2005 x-ray. (Now the 2005 write up mentioned nothing of a lung desease.) In June 2008 again the x-ray write up mentioned the interstitial lung desease with little growth from 2005 but could not compare to the 2007 because the x-ray was not in the jacket. Through all of this my primary care physician mentioned nothing. Well, my primary care retired and I have been having this dry cough for a year and the meds were not working. Therefore, I had to find another primary care

physician who immediately read my charts and said he saw some fibrosis on the x-ray. He sends me for a CT Scan which the results were pulmonary fibrosis in moderate stage. My breathing test was 64 percent. I am in the Norfolk, VA area and any experienced pulmonary doctor is backlogged two to three months. I can see a new guy in a week. I have had thoughts of maybe going to Duke's Interstitual Lung Desease Dept and bypassing the local guys. I am new to all of this and had never hear of pulmonary fibrosis. To say I am concerned is an understatement and really don't know if I should just go to Duke which can see me in a couple weeks, see a new pulmonary doctor locally next week, or wait two to three months and see a pulmonary doctor with some years under his belt. Any help or input from this community would be a blessing right now.

[Guest guest]

Ray,

Hello and welcome! My name is Beth and I live in Durham NC. I get my care at Duke. If you can get in there in a couple of weeks as you said, I would definitely do that. The doctors there are great and you will get a thorough evaluation and some answers.

It's absurd for you to have to wait 3 months to be seen by an experienced pulmo. You need information now! Feel free to email me at mbmurtha@... if you have questions about Duke.

Take it one step at a time. There is no expiration date tatooed on your fanny. For now concentrate on getting seen by a specialist in interstitial lung disease. Everyone here has been down the road you're on and we understand!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Tuesday, March 10, 2009 12:39:27 PMSubject: Just been diagnosed with PF

My father and brother both died of lung cancer associated with asbestosis. I have also been around the stuff so I made sure I had x-rays done every year or so because of my concern to also develop lung cancer. My x-rays back in 2004 noted some slight scarring but nothing significant was noted in the write up. In 2005 the x-ray write up mentioned nothing about my lungs. In 2007 the reader of the x-ray noted the interstitial lung desease with little progression from what was seen on the 2005 x-ray. (Now the 2005 write up mentioned nothing of a lung desease.) In June 2008 again the x-ray write up mentioned the interstitial lung desease with little growth from 2005 but could not compare to the 2007 because the x-ray was not in the jacket. Through all of this my primary care physician mentioned nothing. Well, my primary care retired and I have been having this dry cough for a year and the meds were not working. Therefore, I had to find another primary care

physician who immediately read my charts and said he saw some fibrosis on the x-ray. He sends me for a CT Scan which the results were pulmonary fibrosis in moderate stage. My breathing test was 64 percent. I am in the Norfolk, VA area and any experienced pulmonary doctor is backlogged two to three months. I can see a new guy in a week. I have had thoughts of maybe going to Duke's Interstitual Lung Desease Dept and bypassing the local guys. I am new to all of this and had never hear of pulmonary fibrosis. To say I am concerned is an understatement and really don't know if I should just go to Duke which can see me in a couple weeks, see a new pulmonary doctor locally next week, or wait two to three months and see a pulmonary doctor with some years under his belt. Any help or input from this community would be a blessing right now.

[Guest guest]



Ray...welcome to our board. There are a lot of great guys here that you will enjoy getting acquainted with.

You'll get lots of replies but for me, I'd suggest getting established with a local pulmodude and still going on to Duke. Depending on how far you are from Duke you can have the local dr. here or go to Duke exclusively.

It is the high priority to go to a training hospital if possible.

Be sure and take a list of questions to where ever you go and/or see.

Think about getting your own oximeter at www.portablenebs.com. The yellow one. It's FDA approved and many of us here have one, including me. $65. Works great and it's good to be able to monitor your own blood O2.

Be prepared to be your own best advocate Ray.

Do you have good family support? Friends?

I'll watch for your posts.

Glad to have you with us.

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Re: Just been diagnosed with PF

Hi Ray, I was diagnosed in 6/2004 and have watched the members of this board go through so much trying to find a Doc. they

like and trust that will talk to them and answer the million questions you have--we all had the same ones.�

If you can get to Duke do it... A University Teaching Hosp. is the best. We have members that go to Duke and love it and are getting excellent care. Our moderator Beth goes to Duke and just totally pleased with her care and treatment.

I go to Shands at the University of Florida and am in love with the Doc's and all the people that do the testing. One day testing then see the Doc at the end of the day WITH all the test results. Ya can't beat that..�

Love & Prayers, Peggy

Florida, �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."�

My father and brother both died of lung cancer associated with asbestosis. I have also been around the stuff so I made sure I had x-rays done every year or so because of my concern to also develop lung cancer. My x-rays back in 2004 noted some slight scarring but nothing significant was noted in the write up. In 2005 the x-ray write up mentioned nothing about my lungs. In 2007 the reader of the x-ray noted the interstitial lung desease with little progression from what was seen on the 2005 x-ray. (Now the 2005 write up mentioned nothing of a lung desease.) In June 2008 again the x-ray write up mentioned the interstitial lung desease with little growth from 2005 but could not compare to the 2007 because the x-ray was not in the jacket. Through all of this my primary care physician mentioned nothing. Well, my primary care retired and I have been having this dry cough for a year and the meds were not working. Therefore, I had to find another primary care physician who immediately read my charts and said he saw some fibrosis on the x-ray. He sends me for a CT Scan which the results were pulmonary fibrosis in moderate stage. My breathing test was 64 percent. I am in the Norfolk, VA area and any experienced pulmonary doctor is backlogged two to three months. I can see a new guy in a week. I have had thoughts of maybe going to Duke's Interstitual Lung Desease Dept and bypassing the local guys. I am new to all of this and had never hear of pulmonary fibrosis. To say I am concerned is an understatement and really don't know if I should just go to Duke which can see me in a couple weeks, see a new pulmonary doctor locally next week, or wait two to three months and see a pulmonary doctor with some years under his belt. Any help or input from this community would be a blessing right now.

[Guest guest]

Thank you all for the rapid replies. After being told I had PF I immediately

went on the internet and what the sites I've seen have had to say about the

desease is horrible. Is the desease as bad as what is posted online? I mean

could it take me away from here in the next few years?

[Guest guest]

Ray

Yes and no....it's horrible but life can be quite good with it. It can

take you away quickly or take a long time. You could get in your car

this evening and get in a wreck and die too.

If you read all the statistics and hear the numbers and such you can

think there is no future. But, there is. I can't tell you what it will

be like and you're a long way from knowing as you're still waiting for a

clean good diagnosis even. But the key is concentrating on how to learn

more about it and then how to live with it. I shall repeat as often as I

must that my life has been very good since my diagnosis, some of the

best years of my life.

I did the things related to death and serious illness we all should have

done long ago. I did the paperwork, the legal documents, the planning.

Its done. Complete. Requires no more time or effort. I don't even have

to think of it. I then started living as if each year was my last. I so

wish I'd done that long ago. I've been focused. I've made more friends,

had more fun, traveled more than ever before. I'm not a statistic....I

don't know if i fit in the less than or more than or in the 70% or 30%.

I know the stages of life I expect ahead but not when they will come. I

don't need to. I just take care of myself and live and enjoy.

>

> Thank you all for the rapid replies. After being told I had PF I

immediately went on the internet and what the sites I've seen have had

to say about the desease is horrible. Is the desease as bad as what is

posted online? I mean could it take me away from here in the next few

years?

>

[Guest guest]

Sher/Peggy

I know we say there is no expiration date on our butts but frankly I

can't see mine. How do you and Peggy know? Did you use mirrors? Or did

and Rich check for you? Or are you contortionists? Maybe there was

one back there and I've sat on it so long i've worn it off.

Just as an aside and to show how useless the statistics can be, did you

know that based on the year you were born the stats say you aren't alive

today. The life expectancy of a female born those years was 65-66 years

old. But whats funny is those numbers changed each year you lived.

I do think of the probabilities when doing something like signing a

lease on a house. However, only to protect others. By some estimates

I've already outlived probability but by others I have a significant

chance to still live quite a few years. All I know is I'm very much

alive and with death taken care of I don't even think of it. Now my poor

rheumatologist is driving himself insane wanting to find something he

can treat. I just left trying to convince him that I'm doing fine and

just not concerned. I really felt sorry for him when I left.

>

> Ray...I found out our disease is fatal online as you did.

Unfortunately, there is no cure and no treatment. But that doesn't mean

you or any of us are going to die in the next month.

> There is no expiration on our fannies as Peggy says.

> There are so many variables it's impossible to track you by someone

else.

> Start out with seeing a good dr and/or Duke and go from there. You'll

be having lots of testing.

> We learn here to live with our disease not die with it. Something else

may take our lives...but we do come to terms with the sad news that pf

is indeed fatal.

> I'm sorry Ray. However you are in the best place you can be right now.

Lots of info. and support. Just ask.

>

> MamaSher; 70, IPF 3-06, OR.

> Nasturtiums

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

>

> Re: Just been diagnosed with PF

>

>

> Thank you all for the rapid replies. After being told I had PF I

immediately went on the internet and what the sites I've seen have had

to say about the desease is horrible. Is the desease as bad as what is

posted online? I mean could it take me away from here in the next few

years?

>

[Guest guest]

Thank you all again for your replies. The reports from x-rays says slight

progression from 2005 to 2008 but this was only x-rays.

I just don't know how the insurance works. If I go first to the local

pulmonologist would that have any effects on my insurance covering the costs if

I also went to Duke.

What you all have said makes sense. It is a rare disease and the local

pulmonologists probably would not have enough experience to give me the best

care available. Duke is about 3.5 hours away. I live in Chesapeake, VA right

outside of Norfolk and VA Beach. I am not aware of any PF specialists at the

Medical Center in Richmond, VA. I am also not aware of any at UVA but did read

UVA had the best lung transplant success rate in the world.

My decision would be to go the the local guy and then make an appointment with

Duke. I just do not want to stump my toe with the insurance issue by going to

the local guy first.

Anyone know how insurance works in a case like mine?

[Guest guest]

Thank you all again for your replies. The reports from x-rays says slight

progression from 2005 to 2008 but this was only x-rays.

I just don't know how the insurance works. If I go first to the local

pulmonologist would that have any effects on my insurance covering the costs if

I also went to Duke.

What you all have said makes sense. It is a rare disease and the local

pulmonologists probably would not have enough experience to give me the best

care available. Duke is about 3.5 hours away. I live in Chesapeake, VA right

outside of Norfolk and VA Beach. I am not aware of any PF specialists at the

Medical Center in Richmond, VA. I am also not aware of any at UVA but did read

UVA had the best lung transplant success rate in the world.

My decision would be to go the the local guy and then make an appointment with

Duke. I just do not want to stump my toe with the insurance issue by going to

the local guy first.

Anyone know how insurance works in a case like mine?

[Guest guest]

Thank you all again for your replies. The reports from x-rays says slight

progression from 2005 to 2008 but this was only x-rays.

I just don't know how the insurance works. If I go first to the local

pulmonologist would that have any effects on my insurance covering the costs if

I also went to Duke.

What you all have said makes sense. It is a rare disease and the local

pulmonologists probably would not have enough experience to give me the best

care available. Duke is about 3.5 hours away. I live in Chesapeake, VA right

outside of Norfolk and VA Beach. I am not aware of any PF specialists at the

Medical Center in Richmond, VA. I am also not aware of any at UVA but did read

UVA had the best lung transplant success rate in the world.

My decision would be to go the the local guy and then make an appointment with

Duke. I just do not want to stump my toe with the insurance issue by going to

the local guy first.

Anyone know how insurance works in a case like mine?

[Guest guest]

Ray

None of us can answer the insurance question since we don't know your

insurer, your policy, or the terms of your policy. You'll need to look

at your benefits and then talk to the insurer. Do you need referrals? Is

Duke on your plan?

>

> Thank you all again for your replies. The reports from x-rays says

slight progression from 2005 to 2008 but this was only x-rays.

>

> I just don't know how the insurance works. If I go first to the local

pulmonologist would that have any effects on my insurance covering the

costs if I also went to Duke.

>

> What you all have said makes sense. It is a rare disease and the local

pulmonologists probably would not have enough experience to give me the

best care available. Duke is about 3.5 hours away. I live in Chesapeake,

VA right outside of Norfolk and VA Beach. I am not aware of any PF

specialists at the Medical Center in Richmond, VA. I am also not aware

of any at UVA but did read UVA had the best lung transplant success rate

in the world.

>

> My decision would be to go the the local guy and then make an

appointment with Duke. I just do not want to stump my toe with the

insurance issue by going to the local guy first.

>

> Anyone know how insurance works in a case like mine?

>

[Guest guest]

Ray

None of us can answer the insurance question since we don't know your

insurer, your policy, or the terms of your policy. You'll need to look

at your benefits and then talk to the insurer. Do you need referrals? Is

Duke on your plan?

>

> Thank you all again for your replies. The reports from x-rays says

slight progression from 2005 to 2008 but this was only x-rays.

>

> I just don't know how the insurance works. If I go first to the local

pulmonologist would that have any effects on my insurance covering the

costs if I also went to Duke.

>

> What you all have said makes sense. It is a rare disease and the local

pulmonologists probably would not have enough experience to give me the

best care available. Duke is about 3.5 hours away. I live in Chesapeake,

VA right outside of Norfolk and VA Beach. I am not aware of any PF

specialists at the Medical Center in Richmond, VA. I am also not aware

of any at UVA but did read UVA had the best lung transplant success rate

in the world.

>

> My decision would be to go the the local guy and then make an

appointment with Duke. I just do not want to stump my toe with the

insurance issue by going to the local guy first.

>

> Anyone know how insurance works in a case like mine?

>

[Guest guest]

Kathleen

Genetic IPF isn't as rare as you think although there are differing opinions as to how common it is.

I believe as time goes on we'll find that number increasing dramatically for two reasons. First, many of our parents and grandparents might have just not been diagnosed. Second, they may not have lived as long and not reached the stage of acquiring it.

Hopkins released a report from their study stating as many as 20% of IPF sufferers may be found to have inherited a genetic mistake or gene flaw that predisposes them to it. This is compared to others who have expressed the statement that as many as 2% may be genetic.

The Coalition for Pulmonary Fibrosis published the following:

IPF appears to be genetic in as many as 10% of all IPF cases. There are thousands of families in the U.S. who have had two or more family members diagnosed with the disease. Many scientists believe research involving these families may hold the key to understanding the causes of IPF and may lead to future treatments or a cure. A large familial IPF research study is underway at Duke University. If you have two or more cases of IPF diagnoses in your family, you may want to get involved. Contact Duke University for more information on the Familial Pulmonary Fibrosis research program by visiting www.fpf.duke.edu or calling . The CPF and National Jewish Medical and Research Center established the first Genetic Counseling program for families affected by pulmonary fibrosis. For further information on the Familial Pulmonary Fibrosis Genetic Counseling Program or to speak with a genetic counselor, call 1-, ext. 1022.

> > > From: Jack Marshall mrshlljck (AT) yahoo (DOT) com>> Subject: Re: Re: Just been diagnosed with PF> To: Breathe-Support@ yahoogroups. com> Date: Tuesday, March 10, 2009, 5:28 PM> > > > > > > > Ray, I'm a slightly different breed of IPF. I was DX in June 2005 with IPF which was subsequently confimed via biopsy in 2008. I am 80 years old, work full time managing my own business, putting in about 60 hours a week. There has been only a small progression of lung scarring. I am not on oxygen and have no need of it. I take no medications except for a cough medicine familiarly know as NAC. IPF has had no negative effects on my life, as it continues much as it always has been except for things that cause great exertion. I don't miss really heavy lifting, and I suspect that without IPF my age would make some those things unpleasant as well.. I accept that IPF is a part of my body along with all the other things that make me up. I listen to it carefully and have learned what makes it stir and so have made small modifications to keep it quiet. I know it is a terrible disease, but I do not dwell on that fact. I believe negative> feelings are seriously unhealthy, so I have chosen to to view it more benignly and thus avoid negativism. One can say Jack, you are 80 years old and don't have many years left anway. Who knows? I could live another 10 or 20 years, and yes, I am greedy and want to, but with good health and positive attitudes. I am also fully aware that my health can change over night, which sometimes happens with IPF.> When that happens, I will still work to be as positive as possible and keep on living.> > I write this to illustrate that what you read on line about very short life expectancies is not always the case. The day I was diagnosed, the pulmo said you have IPF and you may live just another three to five years. I said no, I will live until I am dead. I am nearing the end of year five and I am as healthy as I was five years ago. Put aside the notion that you have a short life expectancy and focus on living.> > You are in good hands here. There are many wonderul people in this group that will guide you and counsel you far better than any pulmo, and gently accept your bad times that you can vent here and enjoy your good times.> Jack> 79/IPF - UIP/dx06/05 Maine > > > > > > > From: Beth mbmurtha (AT) yahoo (DOT) com>> To: Breathe-Support@ yahoogroups. com> Sent: Tuesday, March 10, 2009 3:29:57 PM> Subject: Re: Re: Just been diagnosed with PF> > > > > > > Ray,> The internet is the best and the worst. There's tons of information on the internet but for you right now, it's all out of context. Until you have more information about your own situation most of what's out there is only going to make you feel more anxious. I'm not saying don't read it (cause I know from personal experience that's not going to happen), just take things with a grain of salt for now.> There are over 200 different interstitial lung diseases that cause pulmonary fibrosis (lung scarring). Your prognosis very much depends on what type of ILD you have and what caused it. What is true is that treatment options are limited for most types of ILD. Life expectancy ranges from 3-15 years and beyond so it really is best not to jump ahead before you know what's going on in your own body.> I would do two things. First, call and get an appointment with a local pulmo, even if it's 3 or 4 months out. You'll need him/her down the line. Second, call and get an appointment at Duke. The sooner you get that ball rolling the sooner you can start figure out what this is going to mean for you. > Just as a point of reference. I am 49 years old. I was diagnosed in June of 2006 at age 46 with Fibrotic NSIP (non-specific interstitial pneumonitis.. ) I have been essentially stable since that time and though I can no longer work a full time job, I work part time and continue to lead a full and fairly active life with the help of supplemental oxygen. My life didn't end with my diagnosis, it changed course but I'm still here. Others on the board have had different experiences, some better than me, some much more difficult but we all battle on just the same.> Welcome again! We're glad you are here!> > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > > > > > From: rayblackman86 <rayblackman86@ yahoo.com>> To: Breathe-Support@ yahoogroups. com> Sent: Tuesday, March 10, 2009 3:01:20 PM> Subject: Re: Just been diagnosed with PF> > > > Thank you all for the rapid replies. After being told I had PF I immediately went on the internet and what the sites I've seen have had to say about the desease is horrible. Is the desease as bad as what is posted online? I mean could it take me away from here in the next few years?>

[Guest guest]

Kathleen

Genetic IPF isn't as rare as you think although there are differing opinions as to how common it is.

I believe as time goes on we'll find that number increasing dramatically for two reasons. First, many of our parents and grandparents might have just not been diagnosed. Second, they may not have lived as long and not reached the stage of acquiring it.

Hopkins released a report from their study stating as many as 20% of IPF sufferers may be found to have inherited a genetic mistake or gene flaw that predisposes them to it. This is compared to others who have expressed the statement that as many as 2% may be genetic.

The Coalition for Pulmonary Fibrosis published the following:

IPF appears to be genetic in as many as 10% of all IPF cases. There are thousands of families in the U.S. who have had two or more family members diagnosed with the disease. Many scientists believe research involving these families may hold the key to understanding the causes of IPF and may lead to future treatments or a cure. A large familial IPF research study is underway at Duke University. If you have two or more cases of IPF diagnoses in your family, you may want to get involved. Contact Duke University for more information on the Familial Pulmonary Fibrosis research program by visiting www.fpf.duke.edu or calling . The CPF and National Jewish Medical and Research Center established the first Genetic Counseling program for families affected by pulmonary fibrosis. For further information on the Familial Pulmonary Fibrosis Genetic Counseling Program or to speak with a genetic counselor, call 1-, ext. 1022.

> > > From: Jack Marshall mrshlljck (AT) yahoo (DOT) com>> Subject: Re: Re: Just been diagnosed with PF> To: Breathe-Support@ yahoogroups. com> Date: Tuesday, March 10, 2009, 5:28 PM> > > > > > > > Ray, I'm a slightly different breed of IPF. I was DX in June 2005 with IPF which was subsequently confimed via biopsy in 2008. I am 80 years old, work full time managing my own business, putting in about 60 hours a week. There has been only a small progression of lung scarring. I am not on oxygen and have no need of it. I take no medications except for a cough medicine familiarly know as NAC. IPF has had no negative effects on my life, as it continues much as it always has been except for things that cause great exertion. I don't miss really heavy lifting, and I suspect that without IPF my age would make some those things unpleasant as well.. I accept that IPF is a part of my body along with all the other things that make me up. I listen to it carefully and have learned what makes it stir and so have made small modifications to keep it quiet. I know it is a terrible disease, but I do not dwell on that fact. I believe negative> feelings are seriously unhealthy, so I have chosen to to view it more benignly and thus avoid negativism. One can say Jack, you are 80 years old and don't have many years left anway. Who knows? I could live another 10 or 20 years, and yes, I am greedy and want to, but with good health and positive attitudes. I am also fully aware that my health can change over night, which sometimes happens with IPF.> When that happens, I will still work to be as positive as possible and keep on living.> > I write this to illustrate that what you read on line about very short life expectancies is not always the case. The day I was diagnosed, the pulmo said you have IPF and you may live just another three to five years. I said no, I will live until I am dead. I am nearing the end of year five and I am as healthy as I was five years ago. Put aside the notion that you have a short life expectancy and focus on living.> > You are in good hands here. There are many wonderul people in this group that will guide you and counsel you far better than any pulmo, and gently accept your bad times that you can vent here and enjoy your good times.> Jack> 79/IPF - UIP/dx06/05 Maine > > > > > > > From: Beth mbmurtha (AT) yahoo (DOT) com>> To: Breathe-Support@ yahoogroups. com> Sent: Tuesday, March 10, 2009 3:29:57 PM> Subject: Re: Re: Just been diagnosed with PF> > > > > > > Ray,> The internet is the best and the worst. There's tons of information on the internet but for you right now, it's all out of context. Until you have more information about your own situation most of what's out there is only going to make you feel more anxious. I'm not saying don't read it (cause I know from personal experience that's not going to happen), just take things with a grain of salt for now.> There are over 200 different interstitial lung diseases that cause pulmonary fibrosis (lung scarring). Your prognosis very much depends on what type of ILD you have and what caused it. What is true is that treatment options are limited for most types of ILD. Life expectancy ranges from 3-15 years and beyond so it really is best not to jump ahead before you know what's going on in your own body.> I would do two things. First, call and get an appointment with a local pulmo, even if it's 3 or 4 months out. You'll need him/her down the line. Second, call and get an appointment at Duke. The sooner you get that ball rolling the sooner you can start figure out what this is going to mean for you. > Just as a point of reference. I am 49 years old. I was diagnosed in June of 2006 at age 46 with Fibrotic NSIP (non-specific interstitial pneumonitis.. ) I have been essentially stable since that time and though I can no longer work a full time job, I work part time and continue to lead a full and fairly active life with the help of supplemental oxygen. My life didn't end with my diagnosis, it changed course but I'm still here. Others on the board have had different experiences, some better than me, some much more difficult but we all battle on just the same.> Welcome again! We're glad you are here!> > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > > > > > From: rayblackman86 <rayblackman86@ yahoo.com>> To: Breathe-Support@ yahoogroups. com> Sent: Tuesday, March 10, 2009 3:01:20 PM> Subject: Re: Just been diagnosed with PF> > > > Thank you all for the rapid replies. After being told I had PF I immediately went on the internet and what the sites I've seen have had to say about the desease is horrible. Is the desease as bad as what is posted online? I mean could it take me away from here in the next few years?>

[Guest guest]

Ray, Welcome to the "air family". You have

found the right site!!!

We all get it...been there done that and most have pictures to prove

it!!!!

We all read the internet stuff too! Scary stuff without context!

At the bottom of these posts you will see links to databases and files.

Look through our stuff...we've all had varied treatments and

medications and results.

You'll get a rather wide perspective of what 's out there in regard to

ILD.

Please get yourself to a TEACHING HOSPITAL and find a good local

"pulmodude"

to keep you healthy.

Don't panic, you'll figure things out eventually.Everything is too new.

We are here to answer questions, laugh and cry and rant with you too.

Welcome aboard.

Z fibriotic NSIP/05

Z 65,

fibriotic NSIP/o5/PA

And “mild”

PH/10/07 and Reynaud’s too!!

No, NSIP was not

self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to

Darah

and Sara

“I’m gonna

be iron like a lion in Zion” Bob Marley

Vinca

Minor-periwinkle is my flower

rayblackman86 wrote:

My father and brother both died of lung cancer associated with

asbestosis. I have also been around the stuff so I made sure I had

x-rays done every year or so because of my concern to also develop lung

cancer. My x-rays back in 2004 noted some slight scarring but nothing

significant was noted in the write up. In 2005 the x-ray write up

mentioned nothing about my lungs. In 2007 the reader of the x-ray noted

the interstitial lung desease with little progression from what was

seen on the 2005 x-ray. (Now the 2005 write up mentioned nothing of a

lung desease.) In June 2008 again the x-ray write up mentioned the

interstitial lung desease with little growth from 2005 but could not

compare to the 2007 because the x-ray was not in the jacket. Through

all of this my primary care physician mentioned nothing. Well, my

primary care retired and I have been having this dry cough for a year

and the meds were not working. Therefore, I had to find another primary

care physician who immediately read my charts and said he saw some

fibrosis on the x-ray. He sends me for a CT Scan which the results were

pulmonary fibrosis in moderate stage. My breathing test was 64 percent.

I am in the Norfolk, VA area and any experienced pulmonary doctor is

backlogged two to three months. I can see a new guy in a week. I have

had thoughts of maybe going to Duke's Interstitual Lung Desease Dept

and bypassing the local guys. I am new to all of this and had never

hear of pulmonary fibrosis. To say I am concerned is an understatement

and really don't know if I should just go to Duke which can see me in a

couple weeks, see a new pulmonary doctor locally next week, or wait two

to three months and see a pulmonary doctor with some years under his

belt. Any help or input from this community would be a blessing right

now.

[Guest guest]

Ray, Welcome to the "air family". You have

found the right site!!!

We all get it...been there done that and most have pictures to prove

it!!!!

We all read the internet stuff too! Scary stuff without context!

At the bottom of these posts you will see links to databases and files.

Look through our stuff...we've all had varied treatments and

medications and results.

You'll get a rather wide perspective of what 's out there in regard to

ILD.

Please get yourself to a TEACHING HOSPITAL and find a good local

"pulmodude"

to keep you healthy.

Don't panic, you'll figure things out eventually.Everything is too new.

We are here to answer questions, laugh and cry and rant with you too.

Welcome aboard.

Z fibriotic NSIP/05

Z 65,

fibriotic NSIP/o5/PA

And “mild”

PH/10/07 and Reynaud’s too!!

No, NSIP was not

self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to

Darah

and Sara

“I’m gonna

be iron like a lion in Zion” Bob Marley

Vinca

Minor-periwinkle is my flower

rayblackman86 wrote:

My father and brother both died of lung cancer associated with

asbestosis. I have also been around the stuff so I made sure I had

x-rays done every year or so because of my concern to also develop lung

cancer. My x-rays back in 2004 noted some slight scarring but nothing

significant was noted in the write up. In 2005 the x-ray write up

mentioned nothing about my lungs. In 2007 the reader of the x-ray noted

the interstitial lung desease with little progression from what was

seen on the 2005 x-ray. (Now the 2005 write up mentioned nothing of a

lung desease.) In June 2008 again the x-ray write up mentioned the

interstitial lung desease with little growth from 2005 but could not

compare to the 2007 because the x-ray was not in the jacket. Through

all of this my primary care physician mentioned nothing. Well, my

primary care retired and I have been having this dry cough for a year

and the meds were not working. Therefore, I had to find another primary

care physician who immediately read my charts and said he saw some

fibrosis on the x-ray. He sends me for a CT Scan which the results were

pulmonary fibrosis in moderate stage. My breathing test was 64 percent.

I am in the Norfolk, VA area and any experienced pulmonary doctor is

backlogged two to three months. I can see a new guy in a week. I have

had thoughts of maybe going to Duke's Interstitual Lung Desease Dept

and bypassing the local guys. I am new to all of this and had never

hear of pulmonary fibrosis. To say I am concerned is an understatement

and really don't know if I should just go to Duke which can see me in a

couple weeks, see a new pulmonary doctor locally next week, or wait two

to three months and see a pulmonary doctor with some years under his

belt. Any help or input from this community would be a blessing right

now.

[Guest guest]

Ray, Welcome to the "air family". You have

found the right site!!!

We all get it...been there done that and most have pictures to prove

it!!!!

We all read the internet stuff too! Scary stuff without context!

At the bottom of these posts you will see links to databases and files.

Look through our stuff...we've all had varied treatments and

medications and results.

You'll get a rather wide perspective of what 's out there in regard to

ILD.

Please get yourself to a TEACHING HOSPITAL and find a good local

"pulmodude"

to keep you healthy.

Don't panic, you'll figure things out eventually.Everything is too new.

We are here to answer questions, laugh and cry and rant with you too.

Welcome aboard.

Z fibriotic NSIP/05

Z 65,

fibriotic NSIP/o5/PA

And “mild”

PH/10/07 and Reynaud’s too!!

No, NSIP was not

self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to

Darah

and Sara

“I’m gonna

be iron like a lion in Zion” Bob Marley

Vinca

Minor-periwinkle is my flower

rayblackman86 wrote:

My father and brother both died of lung cancer associated with

asbestosis. I have also been around the stuff so I made sure I had

x-rays done every year or so because of my concern to also develop lung

cancer. My x-rays back in 2004 noted some slight scarring but nothing

significant was noted in the write up. In 2005 the x-ray write up

mentioned nothing about my lungs. In 2007 the reader of the x-ray noted

the interstitial lung desease with little progression from what was

seen on the 2005 x-ray. (Now the 2005 write up mentioned nothing of a

lung desease.) In June 2008 again the x-ray write up mentioned the

interstitial lung desease with little growth from 2005 but could not

compare to the 2007 because the x-ray was not in the jacket. Through

all of this my primary care physician mentioned nothing. Well, my

primary care retired and I have been having this dry cough for a year

and the meds were not working. Therefore, I had to find another primary

care physician who immediately read my charts and said he saw some

fibrosis on the x-ray. He sends me for a CT Scan which the results were

pulmonary fibrosis in moderate stage. My breathing test was 64 percent.

I am in the Norfolk, VA area and any experienced pulmonary doctor is

backlogged two to three months. I can see a new guy in a week. I have

had thoughts of maybe going to Duke's Interstitual Lung Desease Dept

and bypassing the local guys. I am new to all of this and had never

hear of pulmonary fibrosis. To say I am concerned is an understatement

and really don't know if I should just go to Duke which can see me in a

couple weeks, see a new pulmonary doctor locally next week, or wait two

to three months and see a pulmonary doctor with some years under his

belt. Any help or input from this community would be a blessing right

now.

[Guest guest]

Ray, Welcome to the board. You will need both a local Pulmonologist as well as

the team at Duke. It's best to start calling your insurance company now to find

out how you need to go about being seen at Duke and be covered.

" Knowledge is power! " and Duke's ILD dept. has that knowledge you need. I'm sure

you've spent alot of time reading on the internet too. Take it slow. For me It

seemed so much scarier to read about it than it does to actually live it. Your

new diagnosis brings with it so many emotions and responibilities. You'll find

every one here on the board to be a blessing. No matter what you ask someone

will always have an answer.

Better Breathing to You!!!

33 FL

IPF dx 1/96

>

> My father and brother both died of lung cancer associated with asbestosis. I

have also been around the stuff so I made sure I had x-rays done every year or

so because of my concern to also develop lung cancer. My x-rays back in 2004

noted some slight scarring but nothing significant was noted in the write up.

In 2005 the x-ray write up mentioned nothing about my lungs. In 2007 the reader

of the x-ray noted the interstitial lung desease with little progression from

what was seen on the 2005 x-ray. (Now the 2005 write up mentioned nothing of a

lung desease.) In June 2008 again the x-ray write up mentioned the interstitial

lung desease with little growth from 2005 but could not compare to the 2007

because the x-ray was not in the jacket. Through all of this my primary care

physician mentioned nothing. Well, my primary care retired and I have been

having this dry cough for a year and the meds were not working. Therefore, I

had to find another primary care physician who immediately read my charts and

said he saw some fibrosis on the x-ray. He sends me for a CT Scan which the

results were pulmonary fibrosis in moderate stage. My breathing test was 64

percent. I am in the Norfolk, VA area and any experienced pulmonary doctor is

backlogged two to three months. I can see a new guy in a week. I have had

thoughts of maybe going to Duke's Interstitual Lung Desease Dept and bypassing

the local guys. I am new to all of this and had never hear of pulmonary

fibrosis. To say I am concerned is an understatement and really don't know if I

should just go to Duke which can see me in a couple weeks, see a new pulmonary

doctor locally next week, or wait two to three months and see a pulmonary doctor

with some years under his belt. Any help or input from this community would be

a blessing right now.

>

[Guest guest]

Ray, Welcome to the board. You will need both a local Pulmonologist as well as

the team at Duke. It's best to start calling your insurance company now to find

out how you need to go about being seen at Duke and be covered.

" Knowledge is power! " and Duke's ILD dept. has that knowledge you need. I'm sure

you've spent alot of time reading on the internet too. Take it slow. For me It

seemed so much scarier to read about it than it does to actually live it. Your

new diagnosis brings with it so many emotions and responibilities. You'll find

every one here on the board to be a blessing. No matter what you ask someone

will always have an answer.

Better Breathing to You!!!

33 FL

IPF dx 1/96

>

> My father and brother both died of lung cancer associated with asbestosis. I

have also been around the stuff so I made sure I had x-rays done every year or

so because of my concern to also develop lung cancer. My x-rays back in 2004

noted some slight scarring but nothing significant was noted in the write up.

In 2005 the x-ray write up mentioned nothing about my lungs. In 2007 the reader

of the x-ray noted the interstitial lung desease with little progression from

what was seen on the 2005 x-ray. (Now the 2005 write up mentioned nothing of a

lung desease.) In June 2008 again the x-ray write up mentioned the interstitial

lung desease with little growth from 2005 but could not compare to the 2007

because the x-ray was not in the jacket. Through all of this my primary care

physician mentioned nothing. Well, my primary care retired and I have been

having this dry cough for a year and the meds were not working. Therefore, I

had to find another primary care physician who immediately read my charts and

said he saw some fibrosis on the x-ray. He sends me for a CT Scan which the

results were pulmonary fibrosis in moderate stage. My breathing test was 64

percent. I am in the Norfolk, VA area and any experienced pulmonary doctor is

backlogged two to three months. I can see a new guy in a week. I have had

thoughts of maybe going to Duke's Interstitual Lung Desease Dept and bypassing

the local guys. I am new to all of this and had never hear of pulmonary

fibrosis. To say I am concerned is an understatement and really don't know if I

should just go to Duke which can see me in a couple weeks, see a new pulmonary

doctor locally next week, or wait two to three months and see a pulmonary doctor

with some years under his belt. Any help or input from this community would be

a blessing right now.

>