Re: Re: Just been diagnosed with PF

[Guest guest]

Ray, It is a horrible monster of a disease BUT you aren't going to die next week. There are some going on 10 years so never give up. I am 5 years since Dx (diagnosis) and am not able to do much. I am on 6 to 8 Leaders of oxygen while up doing a little then while sitting for a few hours I don't need the 02. when ever I get on my feet the ol' hose goes up the nose. Your attitude with this disease will give you a livable happy rest of your life OR you will be pretty miserable always looking for the death thing... I and most of the others are always looking for ways to be happy and do everything we want to do. Live your best life. God Bless you with knowledge and strength. Love and Prayers, Peggy   IPF  2004,  FloridaWorry looks around, Sorry looks back,  Faith looks up. 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, It is a horrible monster of a disease BUT you aren't going to die next week. There are some going on 10 years so never give up. I am 5 years since Dx (diagnosis) and am not able to do much. I am on 6 to 8 Leaders of oxygen while up doing a little then while sitting for a few hours I don't need the 02. when ever I get on my feet the ol' hose goes up the nose. Your attitude with this disease will give you a livable happy rest of your life OR you will be pretty miserable always looking for the death thing... I and most of the others are always looking for ways to be happy and do everything we want to do. Live your best life. God Bless you with knowledge and strength. Love and Prayers, Peggy   IPF  2004,  FloridaWorry looks around, Sorry looks back,  Faith looks up. 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,

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

To: Breathe-Support Sent: Tuesday, March 10, 2009 3:01:20 PMSubject: 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...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. NasturtiumsDon'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]

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. Jack79/IPF - UIP/dx06/05 Maine

To: Breathe-Support Sent: Tuesday, March 10, 2009 3:29:57 PMSubject: 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. comSent: Tuesday, March 10, 2009 3:01:20 PMSubject: 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]

My two brothers were diagnosed at 55 died at 60,61. I have IPF am 56. One brother aggressively treated the disease, had every test and had a 6 week on respirator death. My brother Steve had little medical intervention, cycled cross country had a peaceful death at home. Both were never more alive than between diagnosis and death. See a shrink decide gow you will handle it and enjoy each breath. Kathy IPF 02/15/09

Subject: Re: Re: Just been diagnosed with PFTo: Breathe-Support 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. Jack79/IPF - UIP/dx06/05 Maine

From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Tuesday, March 10, 2009 3:29:57 PMSubject: 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. comSent: Tuesday, March 10, 2009 3:01:20 PMSubject: 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]

Bruce...WHAT? Question Peggy? Why that just isn't done. She said it, I believe it, so there! teehee

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon'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 Iimmediately went on the internet and what the sites I've seen have hadto say about the desease is horrible. Is the desease as bad as what isposted online? I mean could it take me away from here in the next fewyears?>

[Guest guest]

Kathy... I'm really sorry both your brother have died. I worry that someone in my family may get this dreaded disease too....

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon'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]

Kathy... I'm really sorry both your brother have died. I worry that someone in my family may get this dreaded disease too....

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon'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]

Kathy... I'm really sorry both your brother have died. I worry that someone in my family may get this dreaded disease too....

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon'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]

Ray,

My experience is that insurance almost universally pays for a second opinion. That is in effect what you are doing. It really shouldn't matter whether you go to the super specialist or the regular specialist first. But if you are in doubt the easiest way to find out for sure is to call your insurer and ask.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Tuesday, March 10, 2009 7:15:09 PMSubject: Re: Just been diagnosed with PF

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,

My experience is that insurance almost universally pays for a second opinion. That is in effect what you are doing. It really shouldn't matter whether you go to the super specialist or the regular specialist first. But if you are in doubt the easiest way to find out for sure is to call your insurer and ask.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Tuesday, March 10, 2009 7:15:09 PMSubject: Re: Just been diagnosed with PF

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,

My experience is that insurance almost universally pays for a second opinion. That is in effect what you are doing. It really shouldn't matter whether you go to the super specialist or the regular specialist first. But if you are in doubt the easiest way to find out for sure is to call your insurer and ask.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Tuesday, March 10, 2009 7:15:09 PMSubject: Re: Just been diagnosed with PF

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]

Genetic IPF that run in families is very rare. I believe only 50 families in US suffer from it. I lost my mother two uncles, and my brothers. We are a big close knit family 9 siblings, 24 grandkids 5 great grandkids. When someone coughs our hearts stop. We all have rich full lives and love so much more intensely. We are blessed and cursed. I hope, if it is genetic you and your family treasures life, and enjoys each as much as we do. Courage it is just another passage. I hope you have the 15 year kind. Tue, 3/10/09, Sher Bauman wrote:

Subject: Re: Re: Just been diagnosed with PFTo: Breathe-Support Date: Tuesday, March 10, 2009, 5:52 PM

Kathy... I'm really sorry both your brother have died. I worry that someone in my family may get this dreaded disease too....

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon'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]

Genetic IPF that run in families is very rare. I believe only 50 families in US suffer from it. I lost my mother two uncles, and my brothers. We are a big close knit family 9 siblings, 24 grandkids 5 great grandkids. When someone coughs our hearts stop. We all have rich full lives and love so much more intensely. We are blessed and cursed. I hope, if it is genetic you and your family treasures life, and enjoys each as much as we do. Courage it is just another passage. I hope you have the 15 year kind. Tue, 3/10/09, Sher Bauman wrote:

Subject: Re: Re: Just been diagnosed with PFTo: Breathe-Support Date: Tuesday, March 10, 2009, 5:52 PM

Kathy... I'm really sorry both your brother have died. I worry that someone in my family may get this dreaded disease too....

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon'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]

Genetic IPF that run in families is very rare. I believe only 50 families in US suffer from it. I lost my mother two uncles, and my brothers. We are a big close knit family 9 siblings, 24 grandkids 5 great grandkids. When someone coughs our hearts stop. We all have rich full lives and love so much more intensely. We are blessed and cursed. I hope, if it is genetic you and your family treasures life, and enjoys each as much as we do. Courage it is just another passage. I hope you have the 15 year kind. Tue, 3/10/09, Sher Bauman wrote:

Subject: Re: Re: Just been diagnosed with PFTo: Breathe-Support Date: Tuesday, March 10, 2009, 5:52 PM

Kathy... I'm really sorry both your brother have died. I worry that someone in my family may get this dreaded disease too....

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon'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]

We are involved. I believe the fact that my siblings have a 17 year gap between oldest and youngest is providing a great deal of information.

Subject: Re: Just been diagnosed with PFTo: Breathe-Support Date: Tuesday, March 10, 2009, 8:12 PM

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]

We are involved. I believe the fact that my siblings have a 17 year gap between oldest and youngest is providing a great deal of information.

Subject: Re: Just been diagnosed with PFTo: Breathe-Support Date: Tuesday, March 10, 2009, 8:12 PM

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]

We are involved. I believe the fact that my siblings have a 17 year gap between oldest and youngest is providing a great deal of information.

Subject: Re: Just been diagnosed with PFTo: Breathe-Support Date: Tuesday, March 10, 2009, 8:12 PM

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...there is another member on our board name Brett. He also has familial pf.

He is not doing well right now...also has cancer.

If this is genetic, where in the world does it come from? I know the genes, but that doesn't seem like enough information.

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon'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]

Kathleen...there is another member on our board name Brett. He also has familial pf.

He is not doing well right now...also has cancer.

If this is genetic, where in the world does it come from? I know the genes, but that doesn't seem like enough information.

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon'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]

I have no expertise and this a simplified answer, it seems our lung cells have shortened telomeres, an inherited characteristic. Telomores are cell endings that signal when to replicate. We simply are pre determined to die younger. What happens in your seventies happens to us in our fifties. Exciting research is being done. Seems when they crack this; they will crack aging. With stem cell research and the genome project they might find an answer.

From: Jack Marshall <mrshlljck (AT) yahoo (DOT) com>Subject: Re: Re: Just been diagnosed with PFTo: Breathe-Support@ yahoogroups. comDate: 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. Jack79/IPF - UIP/dx06/05 Maine

From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Tuesday, March 10, 2009 3:29:57 PMSubject: 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. comSent: Tuesday, March 10, 2009 3:01:20 PMSubject: 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]

When I can step outside myself. I find it fascinating. Some of my family members are reluctant to get involved. They don't want to know. They want to enjoy their lives without fear. I emailed the NIH study but never followed through.

Subject: Re: Just been diagnosed with PFTo: Breathe-Support Date: Wednesday, March 11, 2009, 2:37 AM

I think more and more genes will be found for IPF - and so eventually the "I" will drop. It won't be idiopathic if you what the cause is.

The really helpful thing about learning the genes etc. as we go along is that there is work being done on a biomarker for PF.

The HPS patients at NIH are part of this research as we know 100 percent that those of us with an error on the HPS gene 1 or 4 will get PF. The NIH has studied us for 15 years or more and has blood samples on ice going back that far - thus they're able to test those samples for the biomarkers. Pretty cool.

That means that if a gene does run in a family, it could be tested for and someday this marker could be monitored so that treatment starts at the earliest possible time, even before fibrosis is visable on a scan. It's really interesting stuff. I get sort of facinated if I can step back and forget for a moment that this is about my lungs too - grin!

Hermansky-Pudlak Syndrome albinism 02 / PF 06

> > > > > > 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]

I don't know how the insurance works, but my out-of-pocket expenses for my visit to Duke was about $75.00, a bargain. As far as I know, my insurance may have paid something, but I don't think that was much either. Jack79/IPF - UIP/dx06/05 Maine

To: Breathe-Support Sent: Tuesday, March 10, 2009 7:15:09 PMSubject: Re: Just been diagnosed with PF

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]

Jack,

You can be certain your insurance paid something. If all you had was a consult then it was a few hundred dollars. If you had any tests it was much much much more. I only know because I was billed for my first visit to Dr. on and all those tests. Duke's financial hardship program then helped pay that off thank God!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Wednesday, March 11, 2009 8:37:04 AMSubject: Re: Re: Just been diagnosed with PF

I don't know how the insurance works, but my out-of-pocket expenses for my visit to Duke was about $75.00, a bargain. As far as I know, my insurance may have paid something, but I don't think that was much either. Jack79/IPF - UIP/dx06/05 Maine

From: rayblackman86 <rayblackman86@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Tuesday, March 10, 2009 7:15:09 PMSubject: Re: Just been diagnosed with PF

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?