Re: A newbie from Washington State

[Guest guest]

AB,

already got the message from mary beth as you can see

> > >

> > > Welcome Erna......I too am new here and I have learned so much in just

> > a few days.....a great group of people here!!

> > >

> > > Patti, 59, Indianapolis, IPF 2007

> > >

> >

>

[Guest guest]

Adrienne

You are correct. I understand what might be gained in some cases but

what would be lost in terms of freedom of expression and comfort level

would be much more. The owner of the forum has made that part clear too.

This would be like one of us sneaking on the caregivers board. The

greatest single thing we have here is the ability to freely discuss

everything with others in the same situation as us.

> > >

> > > Welcome Erna......I too am new here and I have learned so much in

just

> > a few days.....a great group of people here!!

> > >

> > > Patti, 59, Indianapolis, IPF 2007

> > >

> >

>

[Guest guest]

Just so that everyone is clear. Though Dave did mistakenly invite his physician to join Breathe Support, she never actually became a member. I did get a request a couple of weeks back from someone who stated as their reason for wanting to join that they "worked with IPF patients". I emailed this person and explained that Breathe Support is for patients only and suggested other groups she could join instead. Her request to join was declined.

This was an honest mistake on Dave's part. No harm was done. Breathe Support is a patients group and will remain that way!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Tue, December 8, 2009 8:17:28 PMSubject: Re: A newbie from Washington State

AdrienneYou are correct. I understand what might be gained in some cases butwhat would be lost in terms of freedom of expression and comfort levelwould be much more. The owner of the forum has made that part clear too.This would be like one of us sneaking on the caregivers board. Thegreatest single thing we have here is the ability to freely discusseverything with others in the same situation as us.> > >> > > Welcome Erna......I too am new here and I have learned so much injust> > a few days.....a great group of people here!!> > >> > > Patti, 59, Indianapolis, IPF 2007> > >> >>

[Guest guest]

Plus, we have to respect confidentiality.

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Re: A newbie from Washington StateTo: Breathe-Support Date: Tuesday, December 8, 2009, 5:55 PM

Dave,

I believe this web site is only intended for patients so it can be a safe place to express concerns, fears, hapiness and anything else they want to share. I don't believe doctors are to use this site for their informational purposes unless they in fact have PF. I may be wrong but I guess Beth or Bruce would know best..

AB

From: davegreg11 <davegreg11 (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Mon, December 7, 2009 8:03:37 PMSubject: Re: A newbie from Washington State

Erna,I gave my Pulmo. Dr. this web site and she has been going on it. I told her it would let her know how we all feel. She thinks it a great site.Dave, Miami, 43, UIP 11/09> >> > Welcome Erna......I too am new here and I have learned so much in just> a few days.....a great group of people here!!> >> > Patti, 59, Indianapolis, IPF 2007> >>

[Guest guest]

BJ....isn't that a great rate? The breakfast will surprise you too. Really good.

I'm so glad I could pass this on to you and maybe other members. That is a very low rate!

From: Beverley Joy

Sent: Monday, December 07, 2009 6:30 PM

To: Breathe-Support

Subject: Re: Re: A newbie from Washington State

Joyce. I made my reservations. I am getting a room with a kingsize bed for $65. I'm amazed.Beverley Joy,71, UIP,NSIP 1-09,Diabetes,Sjogren's,Fibromyalgia Idaho

From: vrolijk50 <vrolijk50 (AT) yahoo (DOT) com>Subject: Re: A newbie from Washington StateTo: Breathe-Support@ yahoogroups. comDate: Sunday, December 6, 2009, 2:48 AM

Thank you, Beth

Wow, you really have a great group going here I hardly can keep up with the reading. I work a lot on the computer and love to make websites and doing research. I really was amazed that I did not know with all the reading I had done before getting in this group that we had some great IPF doctors here in Washington State.

My diagnosis is strange to me as it says fibrosis and then my Pulmonologist says it cellular from all I have been reading and making some in PDF files so I can have them handy. Cellular NSIP does not have fibrosis. I also understand that there are all kinds of variants to this disease. I do have my little diagnosis from the biopsy on the web. The strangest part was that when I saw the pulmonologist who explained that I first had plain NSIP and then the surgeon who gave me the diagnosis from the biopsy. It was almost like he said this is the biopsy but let someone interpreted more. Two weeks later when he understood that I was looking in Medical website because I have a medical license…. (As counselor so some of it does not make sense at all) He decided at once I had cellular NSIP.

But here I have this paper in my hand that talks about fibrosis especially in the lower lobe. The real problem I have with the diagnosis is that he will not look further why I have this. Per example familial I have three family members who have died from lung disease. And I have a diaphragm that is not working right with other symptoms of some kind of connective tissue disorder. From my understanding this is the one of the first actions to take if you have a diagnosis of NSIP. "Recent Advances in the Diagnosis and Management of Nonspecific Interstitial Pneumonia" if you cannot get into this I can upload or give you a link from site where click this link PDF file is on.

You guys are just great people are sometimes just better together then all the research in the world, thank you again, Erna

>> Erna,> Welcome to Breathe Support. As glad as I am that you have found us I am sorry that you had reason to look for a group like this. > You are correct in that many of us have had a long and difficult road to diagnosis. It does sound however as though you've made progress in that area. > The positive news for you is that you apparently have one of the more treatable types of these diseases. Cellular nsip is among the most responsive to therapy with steroids. Hypersensitivity pneumonitis is also often treated with steroids with a good deal of success in stablizing the disease.> We have lots of members in the pacific northwest with several in Washington state. I'm certain they will chime in with ideas and recommendations for doctors etc. Several of our members have sought treatment at UWMC. It is a pulmonary fibrosis "Center of Excellence" and the team there led by Dr. Ganesh Raghu is very well thought of by many. You might want to strongly consider being evaluated there in order to get all the relevent information and the best next steps to take. > > Please continue reading and communicating with us. You are not alone in this fight!> > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08>  >  > > > > > ____________ _________ _________ __> From: Erna vrolijk50@.. .> To: Breathe-Support@ yahoogroups. com> Sent: Sat, December 5, 2009 2:44:04 AM> Subject: A newbie from Washington State> >  > Hi, All > I am new in the group. I still do not know what to tell people what I have right now. I do not even believe the Pulmonologist and the pulmonology therapist know what it is. > I was finally had my lung biopsy at the VM in Seattle WA on October 23, I was told that it probably would take weeks and would be sent to the east before I had a diagnosis. But a week later I had a note in my hand with NSIP and hypersensitivity pneumonitis as a secondary diagnosis. > The road has been long, I have been silently reading all the e-mails and see most people had a hard road to their diagnosis and then just to find out that you can do basically nothing about it. > Since I also have heart disease and my cardiologist did not get to well along with my pulmonlogist and did not want to take me of the plavix that I have to be on for the rest of my life also. I finally came from up north Washington State down to Seattle. > Still here in the small cities no one knows not even the medical profession seems to care. Per example yesterday I ended for a blood pressure drop in the local hospital where I am doing my pulmonology therapy. The therapist explained the E.R doctor my lung disease was  to hard to explain.  All they could think of was heart and they would not give me my medications for my lungs actually just a few for my heart this morning. I was put in the ICU but did not see a doctor until this morning. He did not examine me but the nurses had already done this.  I could not stop coughing and had chest pain…… It is already hard enough to know if there is something wrong with your heart or lungs and I still do not understand either why the lung specialist are in the same area as the cardiologist. > I would love to hear from other people what they say when they are diagnosed with NSIP? I see many on the board who do. My pulmonologist f irst said just NSIP and now he says cellular NSIP. We have a lot of lung problem on my Moms site of the family. The surgeon gave me a copy of the report and there it says fibrosis at many places. I may have to change pulmologist again as I am thinking of moving in a big city and Seattle is to expensive for me…. And may need to move east ( p.s my first language is Dutch if you see any mistakes) > I am about to move to city somewhere if the housing market was not so bad. And I had good energy not on O2 for the rest of my life…. But I believe I can get passed the O2 part…. I have done some camping trips with it even before I was diagnosed. But I was not on 24 to 7 then either. > Please keep up the good work talking I am learning so much from you!! > I do not see a groups in Washington state does anyone know if there are any in my range. Thank you, Erna> > > Erna> 1992 bird fanciers syndrome > CAD & MI 2004 > ILD 2008 NSIP 2009 > Washington State>

[Guest guest]

hMMMMM, SOMETHING WRONG HERE. I THOUGHT I SET UP THE SIGNATURE OK BUT MY NAME IS NOT APPEARING. I'LL HAVE TO KEEP WORKING.... mAMASHER

From: Verizon Email

Sent: Tuesday, December 08, 2009 6:44 PM

To: Breathe-Support

Subject: Re: Re: A newbie from Washington State

BJ....isn't that a great rate? The breakfast will surprise you too. Really good.

I'm so glad I could pass this on to you and maybe other members. That is a very low rate!

From: Beverley Joy

Sent: Monday, December 07, 2009 6:30 PM

To: Breathe-Support

Subject: Re: Re: A newbie from Washington State

Joyce. I made my reservations. I am getting a room with a kingsize bed for $65. I'm amazed.Beverley Joy,71, UIP,NSIP 1-09,Diabetes,Sjogren's,Fibromyalgia Idaho

From: vrolijk50 <vrolijk50 (AT) yahoo (DOT) com>Subject: Re: A newbie from Washington StateTo: Breathe-Support@ yahoogroups. comDate: Sunday, December 6, 2009, 2:48 AM

Thank you, Beth

Wow, you really have a great group going here I hardly can keep up with the reading. I work a lot on the computer and love to make websites and doing research. I really was amazed that I did not know with all the reading I had done before getting in this group that we had some great IPF doctors here in Washington State.

My diagnosis is strange to me as it says fibrosis and then my Pulmonologist says it cellular from all I have been reading and making some in PDF files so I can have them handy. Cellular NSIP does not have fibrosis. I also understand that there are all kinds of variants to this disease. I do have my little diagnosis from the biopsy on the web. The strangest part was that when I saw the pulmonologist who explained that I first had plain NSIP and then the surgeon who gave me the diagnosis from the biopsy. It was almost like he said this is the biopsy but let someone interpreted more. Two weeks later when he understood that I was looking in Medical website because I have a medical license…. (As counselor so some of it does not make sense at all) He decided at once I had cellular NSIP.

But here I have this paper in my hand that talks about fibrosis especially in the lower lobe. The real problem I have with the diagnosis is that he will not look further why I have this. Per example familial I have three family members who have died from lung disease. And I have a diaphragm that is not working right with other symptoms of some kind of connective tissue disorder. From my understanding this is the one of the first actions to take if you have a diagnosis of NSIP. "Recent Advances in the Diagnosis and Management of Nonspecific Interstitial Pneumonia" if you cannot get into this I can upload or give you a link from site where click this link PDF file is on.

You guys are just great people are sometimes just better together then all the research in the world, thank you again, Erna

>> Erna,> Welcome to Breathe Support. As glad as I am that you have found us I am sorry that you had reason to look for a group like this. > You are correct in that many of us have had a long and difficult road to diagnosis. It does sound however as though you've made progress in that area. > The positive news for you is that you apparently have one of the more treatable types of these diseases. Cellular nsip is among the most responsive to therapy with steroids. Hypersensitivity pneumonitis is also often treated with steroids with a good deal of success in stablizing the disease.> We have lots of members in the pacific northwest with several in Washington state. I'm certain they will chime in with ideas and recommendations for doctors etc. Several of our members have sought treatment at UWMC. It is a pulmonary fibrosis "Center of Excellence" and the team there led by Dr. Ganesh Raghu is very well thought of by many. You might want to strongly consider being evaluated there in order to get all the relevent information and the best next steps to take. > > Please continue reading and communicating with us. You are not alone in this fight!> > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08>  >  > > > > > ____________ _________ _________ __> From: Erna vrolijk50@.. .> To: Breathe-Support@ yahoogroups. com> Sent: Sat, December 5, 2009 2:44:04 AM> Subject: A newbie from Washington State> >  > Hi, All > I am new in the group. I still do not know what to tell people what I have right now. I do not even believe the Pulmonologist and the pulmonology therapist know what it is. > I was finally had my lung biopsy at the VM in Seattle WA on October 23, I was told that it probably would take weeks and would be sent to the east before I had a diagnosis. But a week later I had a note in my hand with NSIP and hypersensitivity pneumonitis as a secondary diagnosis. > The road has been long, I have been silently reading all the e-mails and see most people had a hard road to their diagnosis and then just to find out that you can do basically nothing about it. > Since I also have heart disease and my cardiologist did not get to well along with my pulmonlogist and did not want to take me of the plavix that I have to be on for the rest of my life also. I finally came from up north Washington State down to Seattle. > Still here in the small cities no one knows not even the medical profession seems to care. Per example yesterday I ended for a blood pressure drop in the local hospital where I am doing my pulmonology therapy. The therapist explained the E.R doctor my lung disease was  to hard to explain.  All they could think of was heart and they would not give me my medications for my lungs actually just a few for my heart this morning. I was put in the ICU but did not see a doctor until this morning. He did not examine me but the nurses had already done this.  I could not stop coughing and had chest pain…… It is already hard enough to know if there is something wrong with your heart or lungs and I still do not understand either why the lung specialist are in the same area as the cardiologist. > I would love to hear from other people what they say when they are diagnosed with NSIP? I see many on the board who do. My pulmonologist f irst said just NSIP and now he says cellular NSIP. We have a lot of lung problem on my Moms site of the family. The surgeon gave me a copy of the report and there it says fibrosis at many places. I may have to change pulmologist again as I am thinking of moving in a big city and Seattle is to expensive for me…. And may need to move east ( p.s my first language is Dutch if you see any mistakes) > I am about to move to city somewhere if the housing market was not so bad. And I had good energy not on O2 for the rest of my life…. But I believe I can get passed the O2 part…. I have done some camping trips with it even before I was diagnosed. But I was not on 24 to 7 then either. > Please keep up the good work talking I am learning so much from you!! > I do not see a groups in Washington state does anyone know if there are any in my range. Thank you, Erna> > > Erna> 1992 bird fanciers syndrome > CAD & MI 2004 > ILD 2008 NSIP 2009 > Washington State>

No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.709 / Virus Database: 270.14.99/2553 - Release Date: 12/08/09 11:54:00

[Guest guest]

Sher, Yes. It is very affordable and I need that . I got a prescrption today and it was $91. My kidneys may be very bad. I have to do a 24 hour urine test to see. If the reading was a mistake there is nothing to worry about. If it is correct I have to go to a nephrologist. I don't need another ologist. I don't remember the names of things but something was suppose to be 30 and it was 1030. That sounds bad. I hurt everywhere. I had her about my sleeping 10 to 12 hours and she said it is my way of coping with stress. Beverley Joy,71, UIP,NSIP 1-09,Diabetes,Sjogren's,Fibromyalgia Idaho

From: vrolijk50 <vrolijk50 (AT) yahoo (DOT) com>Subject: Re: A newbie from Washington StateTo: Breathe-Support@ yahoogroups. comDate: Sunday, December 6, 2009, 2:48 AM

Thank you, Beth

Wow, you really have a great group going here I hardly can keep up with the reading. I work a lot on the computer and love to make websites and doing research. I really was amazed that I did not know with all the reading I had done before getting in this group that we had some great IPF doctors here in Washington State.

My diagnosis is strange to me as it says fibrosis and then my Pulmonologist says it cellular from all I have been reading and making some in PDF files so I can have them handy. Cellular NSIP does not have fibrosis. I also understand that there are all kinds of variants to this disease. I do have my little diagnosis from the biopsy on the web. The strangest part was that when I saw the pulmonologist who explained that I first had plain NSIP and then the surgeon who gave me the diagnosis from the biopsy. It was almost like he said this is the biopsy but let someone interpreted more. Two weeks later when he understood that I was looking in Medical website because I have a medical license…. (As counselor so some of it does not make sense at all) He decided at once I had cellular NSIP.

But here I have this paper in my hand that talks about fibrosis especially in the lower lobe. The real problem I have with the diagnosis is that he will not look further why I have this. Per example familial I have three family members who have died from lung disease. And I have a diaphragm that is not working right with other symptoms of some kind of connective tissue disorder. From my understanding this is the one of the first actions to take if you have a diagnosis of NSIP. "Recent Advances in the Diagnosis and Management of Nonspecific Interstitial Pneumonia" if you cannot get into this I can upload or give you a link from site where click this link PDF file is on.

You guys are just great people are sometimes just better together then all the research in the world, thank you again, Erna

>> Erna,> Welcome to Breathe Support. As glad as I am that you have found us I am sorry that you had reason to look for a group like this. > You are correct in that many of us have had a long and difficult road to diagnosis. It does sound however as though you've made progress in that area. > The positive news for you is that you apparently have one of the more treatable types of these diseases. Cellular nsip is among the most responsive to therapy with steroids. Hypersensitivity pneumonitis is also often treated with steroids with a good deal of success in stablizing the disease.> We have lots of members in the pacific northwest with several in Washington state. I'm certain they will chime in with ideas and recommendations for doctors etc. Several of our members have sought treatment at UWMC. It is a pulmonary fibrosis "Center of Excellence" and the team there led by Dr. Ganesh Raghu is very well thought of by many. You might want to strongly consider being evaluated there in order to get all the relevent information and the best next steps to take. > > Please continue reading and communicating with us. You are not alone in this fight!> > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08>  >  > > > > > ____________ _________ _________ __> From: Erna vrolijk50@.. .> To: Breathe-Support@ yahoogroups. com> Sent: Sat, December 5, 2009 2:44:04 AM> Subject: A newbie from Washington State> >  > Hi, All > I am new in the group. I still do not know what to tell people what I have right now. I do not even believe the Pulmonologist and the pulmonology therapist know what it is. > I was finally had my lung biopsy at the VM in Seattle WA on October 23, I was told that it probably would take weeks and would be sent to the east before I had a diagnosis. But a week later I had a note in my hand with NSIP and hypersensitivity pneumonitis as a secondary diagnosis. > The road has been long, I have been silently reading all the e-mails and see most people had a hard road to their diagnosis and then just to find out that you can do basically nothing about it. > Since I also have heart disease and my cardiologist did not get to well along with my pulmonlogist and did not want to take me of the plavix that I have to be on for the rest of my life also. I finally came from up north Washington State down to Seattle. > Still here in the small cities no one knows not even the medical profession seems to care. Per example yesterday I ended for a blood pressure drop in the local hospital where I am doing my pulmonology therapy. The therapist explained the E.R doctor my lung disease was  to hard to explain.  All they could think of was heart and they would not give me my medications for my lungs actually just a few for my heart this morning. I was put in the ICU but did not see a doctor until this morning. He did not examine me but the nurses had already done this.  I could not stop coughing and had chest pain…… It is already hard enough to know if there is something wrong with your heart or lungs and I still do not understand either why the lung specialist are in the same area as the cardiologist. > I would love to hear from other people what they say when they are diagnosed with NSIP? I see many on the board who do. My pulmonologist f irst said just NSIP and now he says cellular NSIP. We have a lot of lung problem on my Moms site of the family. The surgeon gave me a copy of the report and there it says fibrosis at many places. I may have to change pulmologist again as I am thinking of moving in a big city and Seattle is to expensive for me…. And may need to move east ( p.s my first language is Dutch if you see any mistakes) > I am about to move to city somewhere if the housing market was not so bad. And I had good energy not on O2 for the rest of my life…. But I believe I can get passed the O2 part…. I have done some camping trips with it even before I was diagnosed. But I was not on 24 to 7 then either. > Please keep up the good work talking I am learning so much from you!! > I do not see a groups in Washington state does anyone know if there are any in my range. Thank you, Erna> > > Erna> 1992 bird fanciers syndrome > CAD & MI 2004 > ILD 2008 NSIP 2009 > Washington State>

[Guest guest]

Hi, Beverly Joy

Sorry for not responding for so long, Monday I had to go to Seattle. The heart problems are not fixed yet. So now the Pulmonary Rehabilitation wants an Okay from the cardiologist. Wow, I did not know my blood pressure went down all the way to 50/40. And several times in the emergency room. Now I understand why they want an okay from the cardio. And why I have been

sleeping so much and so tired.

Anyway I see you found a place in Seattle. It sounds great we never can find a place under 110 dollars which is usually near Virginia Mason. Sounds like a great deal. My cushions disease was mostly from the prednisone and I have a horrible time with it.. Sorry your sister had this cushioning. The prednisone can be stopped but not in my case…… I guess that is why the pulmonologist only gives me10 mg instead of 40mg as recommended but said would add more on soon. I am already getting fat after 3 weeks and my moods are very unreliable….. He was going to add

azathioprine next week. Hmmm. sounds like fun.

It would be nice to see if we could see each other in Seattle……. I keep ending up down there anyway at least once or twice week if you would like??

I am getting a little stronger today so hopefully I can answer all the e-mails from you wonderful people tomorrow.

Miranda I am keeping you in my thoughts and prayers it was so wonderful to see that you got your new lungs almost like being born anew and you are doing so great. Erna

Erna

1992 bird fanciers syndrome, CAD & MI 2004, ILD 2008 NSIP 2009 Washington State

From: vrolijk50 <vrolijk50 (AT) yahoo (DOT) com>Subject: Re: A newbie from Washington StateTo: Breathe-Support@ yahoogroups. comDate: Sunday, December 6, 2009, 2:48 AM

Thank you, Beth

Wow, you really have a great group going here I hardly can keep up with the reading. I work a lot on the computer and love to make websites and doing research. I really was amazed that I did not know with all the reading I had done before getting in this group that we had some great IPF doctors here in Washington State.

My diagnosis is strange to me as it says fibrosis and then my Pulmonologist says it cellular from all I have been reading and making some in PDF files so I can have them handy. Cellular NSIP does not have fibrosis. I also understand that there are all kinds of variants to this disease. I do have my little diagnosis from the biopsy on the web. The strangest part was that when I saw the pulmonologist who explained that I first had plain NSIP and then the surgeon who gave me the diagnosis from the biopsy. It was almost like he said this is the biopsy but let someone interpreted more. Two weeks later when he understood that I was looking in Medical website because I have a medical license…. (As

counselor so some of it does not make sense at all) He decided at once I had cellular NSIP.

But here I have this paper in my hand that talks about fibrosis especially in the lower lobe. The real problem I have with the diagnosis is that he will not look further why I have this. Per example familial I have three family members who have died from lung disease. And I have a diaphragm that is not working right with other symptoms of some kind of connective tissue disorder. From my understanding this is the one of the first actions to take if you have a diagnosis of NSIP. "Recent Advances in the Diagnosis and Management of Nonspecific Interstitial Pneumonia" if you cannot get into this I can upload or give you a link from site where click this

link PDF file is on.

You guys are just great people are sometimes just better together then all the research in the world, thank you again, Erna

>> Erna,> Welcome to Breathe Support. As glad as I am that you have found us I am sorry that you had reason to look for a group like this. > You are correct in that many of us have had a long and difficult road to diagnosis. It does sound however as though you've made progress in that area. > The positive news for you is that you apparently have one of the more treatable types of these diseases. Cellular nsip is among the most responsive to therapy with steroids. Hypersensitivity pneumonitis is also often treated with steroids with a good deal of success in stablizing the disease.> We have lots of members in the pacific northwest with several in Washington state. I'm certain they will chime in with ideas and recommendations for doctors etc. Several of our members have sought

treatment at UWMC. It is a pulmonary fibrosis "Center of Excellence" and the team there led by Dr. Ganesh Raghu is very well thought of by many. You might want to strongly consider being evaluated there in order to get all the relevent information and the best next steps to take. > > Please continue reading and communicating with us. You are not alone in this fight!> > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08>  >  > > > > > ____________ _________ _________ __> From: Erna vrolijk50@.. .> To: Breathe-Support@ yahoogroups. com> Sent: Sat, December 5, 2009 2:44:04 AM> Subject: A newbie from Washington State> >  > Hi, All > I am new in the group. I still do not know what to tell people what I have right now. I do not even believe

the Pulmonologist and the pulmonology therapist know what it is. > I was finally had my lung biopsy at the VM in Seattle WA on October 23, I was told that it probably would take weeks and would be sent to the east before I had a diagnosis. But a week later I had a note in my hand with NSIP and hypersensitivity pneumonitis as a secondary diagnosis. > The road has been long, I have been silently reading all the e-mails and see most people had a hard road to their diagnosis and then just to find out that you can do basically nothing about it. > Since I also have heart disease and my cardiologist did not get to well along with my pulmonlogist and did not want to take me of the plavix that I have to be on for the rest of my life also. I finally came from up north Washington State down to Seattle. > Still here in the small cities no one knows not even the medical profession seems to care. Per example yesterday I ended for a blood

pressure drop in the local hospital where I am doing my pulmonology therapy. The therapist explained the E.R doctor my lung disease was  to hard to explain.  All they could think of was heart and they would not give me my medications for my lungs actually just a few for my heart this morning. I was put in the ICU but did not see a doctor until this morning. He did not examine me but the nurses had already done this.  I could not stop coughing and had chest pain…… It is already hard enough to know if there is something wrong with your heart or lungs and I still do not understand either why the lung specialist are in the same area as the cardiologist. > I would love to hear from other people what they say when they are diagnosed with NSIP? I see many on the board who do. My pulmonologist f irst said just NSIP and now he says cellular NSIP. We have a lot of lung problem on my Moms site of the family. The

surgeon gave me a copy of the report and there it says fibrosis at many places. I may have to change pulmologist again as I am thinking of moving in a big city and Seattle is to expensive for me…. And may need to move east ( p.s my first language is Dutch if you see any mistakes) > I am about to move to city somewhere if the housing market was not so bad. And I had good energy not on O2 for the rest of my life…. But I believe I can get passed the O2 part…. I have done some camping trips with it even before I was diagnosed. But I was not on 24 to 7 then either. > Please keep up the good work talking I am learning so much from you!! > I do not see a groups in Washington state does anyone know if there are any in my range. Thank you, Erna> > > Erna> 1992 bird fanciers syndrome > CAD & MI 2004 > ILD 2008 NSIP 2009 > Washington State>

[Guest guest]

the hospital that i go to for pulmonary rehab has cardiac rehab in the same department on different days or different times of the day

maybe the 2 departments can work out a system combining both cardiac and pulmonary rehabfor you

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Re: A newbie from Washington StateTo: Breathe-Support Date: Wednesday, December 9, 2009, 4:20 AM

Hi, Beverly Joy Sorry for not responding for so long, Monday I had to go to Seattle. The heart problems are not fixed yet. So now the Pulmonary Rehabilitation wants an Okay from the cardiologist. Wow, I did not know my blood pressure went down all the way to 50/40. And several times in the emergency room. Now I understand why they want an okay from the cardio. And why I have been sleeping so much and so tired. Anyway I see you found a place in Seattle. It sounds great we never can find a place under 110 dollars which is usually near Virginia Mason. Sounds like a great deal. My cushions disease was mostly from the prednisone and I have a horrible time with it.. Sorry your sister had this cushioning. The prednisone can be stopped but not in my case…… I guess that is why the pulmonologist only gives me10 mg instead of 40mg as recommended but said would add more on soon. I am already getting fat after 3 weeks and my moods are very unreliable….. He was going to add azathioprine next week. Hmmm. sounds like

fun. It would be nice to see if we could see each other in Seattle……. I keep ending up down there anyway at least once or twice week if you would like?? I am getting a little stronger today so hopefully I can answer all the e-mails from you wonderful people tomorrow. Miranda I am keeping you in my thoughts and prayers it was so wonderful to see that you got your new lungs almost like being born anew and you are doing so great. Erna Erna 1992 bird fanciers syndrome, CAD & MI 2004, ILD 2008 NSIP 2009 Washington State

From: vrolijk50 <vrolijk50 (AT) yahoo (DOT) com>Subject: Re: A newbie from Washington StateTo: Breathe-Support@ yahoogroups. comDate: Sunday, December 6, 2009, 2:48 AM

Thank you, Beth

Wow, you really have a great group going here I hardly can keep up with the reading. I work a lot on the computer and love to make websites and doing research. I really was amazed that I did not know with all the reading I had done before getting in this group that we had some great IPF doctors here in Washington State.

My diagnosis is strange to me as it says fibrosis and then my Pulmonologist says it cellular from all I have been reading and making some in PDF files so I can have them handy. Cellular NSIP does not have fibrosis. I also understand that there are all kinds of variants to this disease. I do have my little diagnosis from the biopsy on the web. The strangest part was that when I saw the pulmonologist who explained that I first had plain NSIP and then the surgeon who gave me the diagnosis from the biopsy. It was almost like he said this is the biopsy but let someone interpreted more. Two weeks later when he understood that I was looking in Medical website because I have a medical license…. (As

counselor so some of it does not make sense at all) He decided at once I had cellular NSIP.

But here I have this paper in my hand that talks about fibrosis especially in the lower lobe. The real problem I have with the diagnosis is that he will not look further why I have this. Per example familial I have three family members who have died from lung disease. And I have a diaphragm that is not working right with other symptoms of some kind of connective tissue disorder. From my understanding this is the one of the first actions to take if you have a diagnosis of NSIP. "Recent Advances in the Diagnosis and Management of Nonspecific Interstitial Pneumonia" if you cannot get into this I can upload or give you a link from site where click this

link PDF file is on.

You guys are just great people are sometimes just better together then all the research in the world, thank you again, Erna

>> Erna,> Welcome to Breathe Support. As glad as I am that you have found us I am sorry that you had reason to look for a group like this. > You are correct in that many of us have had a long and difficult road to diagnosis. It does sound however as though you've made progress in that area. > The positive news for you is that you apparently have one of the more treatable types of these diseases. Cellular nsip is among the most responsive to therapy with steroids. Hypersensitivity pneumonitis is also often treated with steroids with a good deal of success in stablizing the disease.> We have lots of members in the pacific northwest with several in Washington state. I'm certain they will chime in with ideas and recommendations for doctors etc. Several of our members have sought

treatment at UWMC. It is a pulmonary fibrosis "Center of Excellence" and the team there led by Dr. Ganesh Raghu is very well thought of by many. You might want to strongly consider being evaluated there in order to get all the relevent information and the best next steps to take. > > Please continue reading and communicating with us. You are not alone in this fight!> > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08>  >  > > > > > ____________ _________ _________ __> From: Erna vrolijk50@.. .> To: Breathe-Support@ yahoogroups. com> Sent: Sat, December 5, 2009 2:44:04 AM> Subject: A newbie from Washington State> >  > Hi, All > I am new in the group. I still do not know what to tell people what I have right now. I do not even believe

the Pulmonologist and the pulmonology therapist know what it is. > I was finally had my lung biopsy at the VM in Seattle WA on October 23, I was told that it probably would take weeks and would be sent to the east before I had a diagnosis. But a week later I had a note in my hand with NSIP and hypersensitivity pneumonitis as a secondary diagnosis. > The road has been long, I have been silently reading all the e-mails and see most people had a hard road to their diagnosis and then just to find out that you can do basically nothing about it. > Since I also have heart disease and my cardiologist did not get to well along with my pulmonlogist and did not want to take me of the plavix that I have to be on for the rest of my life also. I finally came from up north Washington State down to Seattle. > Still here in the small cities no one knows not even the medical profession seems to care. Per example yesterday I ended for a blood

pressure drop in the local hospital where I am doing my pulmonology therapy. The therapist explained the E.R doctor my lung disease was  to hard to explain.  All they could think of was heart and they would not give me my medications for my lungs actually just a few for my heart this morning. I was put in the ICU but did not see a doctor until this morning. He did not examine me but the nurses had already done this.  I could not stop coughing and had chest pain…… It is already hard enough to know if there is something wrong with your heart or lungs and I still do not understand either why the lung specialist are in the same area as the cardiologist. > I would love to hear from other people what they say when they are diagnosed with NSIP? I see many on the board who do. My pulmonologist f irst said just NSIP and now he says cellular NSIP. We have a lot of lung problem on my Moms site of the family. The

surgeon gave me a copy of the report and there it says fibrosis at many places. I may have to change pulmologist again as I am thinking of moving in a big city and Seattle is to expensive for me…. And may need to move east ( p.s my first language is Dutch if you see any mistakes) > I am about to move to city somewhere if the housing market was not so bad. And I had good energy not on O2 for the rest of my life…. But I believe I can get passed the O2 part…. I have done some camping trips with it even before I was diagnosed. But I was not on 24 to 7 then either. > Please keep up the good work talking I am learning so much from you!! > I do not see a groups in Washington state does anyone know if there are any in my range. Thank you, Erna> > > Erna> 1992 bird fanciers syndrome > CAD & MI 2004 > ILD 2008 NSIP 2009 > Washington State>

[Guest guest]

To All,

I'd like to weigh in on the doctor " checking the site " issue only because she is

also my pulmonologist.

First, let me say that I'm in full support of the web site being what it was set

up to be with whatever rules we have. Patients only.

Secondly, I can also tell you that Dr. Glassberg is a very caring doctor who

wants to know more about how patients feel and what they are going through

because she does a lot of research. She would have only had the best intentions

for going on the site. I'm sure she is curious because I've also related info

from the site to her. She truly cares about her patients.

That's my two cents.

Terre, IPF, 6-08, FL

> > > >

> > > > Welcome Erna......I too am new here and I have learned so much in

> just

> > > a few days.....a great group of people here!!

> > > >

> > > > Patti, 59, Indianapolis, IPF 2007

> > > >

> > >

> >

>

[Guest guest]

Terre

No one was questioning her intentions or anything about her. I wish the

doctors would get their own site to discuss and hear but I doubt enough

doctors would make the time. The fact she would is to her credit. I know

many of us do discuss things we've learned or heard here with our

doctors and I think thats great that we can have such discussions.

Funny, I was at my pulmonologist not an hour ago and somehow we were

discussing medical centers and we shared our high opinions of a couple

that i was able to tell him how many patients from here had been and

loved them without discussing any names or specifics.

There is no reason to defend anyone because no one has said that anyone

did anything wrong. I'm sure people ask to join every day and are turned

down because they don't fit or are sent to one of the other forums. I

can't even imagine the number of requests. I do know the moderators have

done a great job keeping spammers away and many yahoo boards are filled

with them (we've only had a couple of instances). I wish there was some

other place to interact with the medical community but don't see that

happening. Unfortunately too, the doctors and nurses who would get

involved are those who need it the least. Those out there who know

nothing about the disease or misdiagnose or just give the death sentence

speech wouldn't go anywhere to learn for the most part.

Sounds like you both have a great doctor you have confidence in. I

wasn't familiar with her prior to you going. It's great to learn. I

considered at one time moving back to Miami (not going to now) but

having learned about her would certainly make such a move easier to

consider. I won't be moving anywhere, but if I was planning to then the

medical care would be a prime consideration.

> > > > >

> > > > > Welcome Erna......I too am new here and I have learned so much

in

> > just

> > > > a few days.....a great group of people here!!

> > > > >

> > > > > Patti, 59, Indianapolis, IPF 2007

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Beverley,

Sorry you have to go through another "ologist." But hopefully they will pin-point the problem and take good care of you. It's okay to sleep, I've been resting along more these days too. Part of its the bear in me that wants to hibernate from the winter cold! C_53_Familial IPF_5/09Washington

To: Breathe-Support Sent: Tue, December 8, 2009 9:52:31 PMSubject: Re: Re: A newbie from Washington State

Sher, Yes. It is very affordable and I need that . I got a prescrption today and it was $91. My kidneys may be very bad. I have to do a 24 hour urine test to see. If the reading was a mistake there is nothing to worry about. If it is correct I have to go to a nephrologist. I don't need another ologist. I don't remember the names of things but something was suppose to be 30 and it was 1030. That sounds bad. I hurt everywhere. I had her about my sleeping 10 to 12 hours and she said it is my way of coping with stress. Beverley Joy,71, UIP,NSIP 1-09,Diabetes, Sjogren's, Fibromyalgia Idaho

From: vrolijk50 <vrolijk50 (AT) yahoo (DOT) com>Subject: Re: A newbie from Washington StateTo: Breathe-Support@ yahoogroups. comDate: Sunday, December 6, 2009, 2:48 AM

Thank you, Beth

Wow, you really have a great group going here I hardly can keep up with the reading. I work a lot on the computer and love to make websites and doing research. I really was amazed that I did not know with all the reading I had done before getting in this group that we had some great IPF doctors here in Washington State.

My diagnosis is strange to me as it says fibrosis and then my Pulmonologist says it cellular from all I have been reading and making some in PDF files so I can have them handy. Cellular NSIP does not have fibrosis. I also understand that there are all kinds of variants to this disease. I do have my little diagnosis from the biopsy on the web. The strangest part was that when I saw the pulmonologist who explained that I first had plain NSIP and then the surgeon who gave me the diagnosis from the biopsy. It was almost like he said this is the biopsy but let someone interpreted more. Two weeks later when he understood that I was looking in Medical website because I have a medical license…. (As

counselor so some of it does not make sense at all) He decided at once I had cellular NSIP.

But here I have this paper in my hand that talks about fibrosis especially in the lower lobe. The real problem I have with the diagnosis is that he will not look further why I have this. Per example familial I have three family members who have died from lung disease. And I have a diaphragm that is not working right with other symptoms of some kind of connective tissue disorder. From my understanding this is the one of the first actions to take if you have a diagnosis of NSIP. "Recent Advances in the Diagnosis and Management of Nonspecific Interstitial Pneumonia" if you cannot get into this I can upload or give you a link from site where click this

link PDF file is on.

You guys are just great people are sometimes just better together then all the research in the world, thank you again, Erna

>> Erna,> Welcome to Breathe Support. As glad as I am that you have found us I am sorry that you had reason to look for a group like this. > You are correct in that many of us have had a long and difficult road to diagnosis. It does sound however as though you've made progress in that area. > The positive news for you is that you apparently have one of the more treatable types of these diseases. Cellular nsip is among the most responsive to therapy with steroids. Hypersensitivity pneumonitis is also often treated with steroids with a good deal of success in stablizing the disease.> We have lots of members in the pacific northwest with several in Washington state. I'm certain they will chime in with ideas and recommendations for doctors etc. Several of our members have sought

treatment at UWMC. It is a pulmonary fibrosis "Center of Excellence" and the team there led by Dr. Ganesh Raghu is very well thought of by many. You might want to strongly consider being evaluated there in order to get all the relevent information and the best next steps to take. > > Please continue reading and communicating with us. You are not alone in this fight!> > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08>  >  > > > > > ____________ _________ _________ __> From: Erna vrolijk50@.. .> To: Breathe-Support@ yahoogroups. com> Sent: Sat, December 5, 2009 2:44:04 AM> Subject: A newbie from Washington State> >  > Hi, All > I am new in the group. I still do not know what to tell people what I have right now. I do not even believe

the Pulmonologist and the pulmonology therapist know what it is. > I was finally had my lung biopsy at the VM in Seattle WA on October 23, I was told that it probably would take weeks and would be sent to the east before I had a diagnosis. But a week later I had a note in my hand with NSIP and hypersensitivity pneumonitis as a secondary diagnosis. > The road has been long, I have been silently reading all the e-mails and see most people had a hard road to their diagnosis and then just to find out that you can do basically nothing about it. > Since I also have heart disease and my cardiologist did not get to well along with my pulmonlogist and did not want to take me of the plavix that I have to be on for the rest of my life also. I finally came from up north Washington State down to Seattle. > Still here in the small cities no one knows not even the medical profession seems to care. Per example yesterday I ended for a blood

pressure drop in the local hospital where I am doing my pulmonology therapy. The therapist explained the E.R doctor my lung disease was  to hard to explain.  All they could think of was heart and they would not give me my medications for my lungs actually just a few for my heart this morning. I was put in the ICU but did not see a doctor until this morning. He did not examine me but the nurses had already done this.  I could not stop coughing and had chest pain…… It is already hard enough to know if there is something wrong with your heart or lungs and I still do not understand either why the lung specialist are in the same area as the cardiologist. > I would love to hear from other people what they say when they are diagnosed with NSIP? I see many on the board who do. My pulmonologist f irst said just NSIP and now he says cellular NSIP. We have a lot of lung problem on my Moms site of the family. The

surgeon gave me a copy of the report and there it says fibrosis at many places. I may have to change pulmologist again as I am thinking of moving in a big city and Seattle is to expensive for me…. And may need to move east ( p.s my first language is Dutch if you see any mistakes) > I am about to move to city somewhere if the housing market was not so bad. And I had good energy not on O2 for the rest of my life…. But I believe I can get passed the O2 part…. I have done some camping trips with it even before I was diagnosed. But I was not on 24 to 7 then either. > Please keep up the good work talking I am learning so much from you!! > I do not see a groups in Washington state does anyone know if there are any in my range. Thank you, Erna> > > Erna> 1992 bird fanciers syndrome > CAD & MI 2004 > ILD 2008 NSIP 2009 > Washington State>

[Guest guest]

Your doctor could start a support group for her patients. I believe the support group that is held monthly at the University of Washington Medical Center in Seattle, WA is co-lead by Dr. Raghu, the Chief Lung Specialist at the clinic. C_53_Familial IPF_5/09Washington

> > > > >> > > > > Welcome Erna......I too am new here and I have learned so muchin> > just> > > > a few days.....a great group of people here!!> > > > >> > > > > Patti, 59, Indianapolis, IPF 2007> > > > >> > > >> > >> >>

[Guest guest]

Hello ErnaI feel sorry for you having to take Prednisone. Especially with Cushings disease. My sisters body was creating too much. She wasn't allowed to take Prednisone.If you get an appointment at UWMC they send a list of motels. Sher told me where she went and it sounded good so that is where I made my reservations.I never go to Seattle unless I have to. I go to Gig Harbor and lives in Graapeview. With you in Mount Vernon that is a long ways away but we'll figure out something.Beverley Joy,71, UIP,NSIP 1-09,Diabetes,Sjogren's,Fibromyalgia Idaho

From: vrolijk50 <vrolijk50 (AT) yahoo (DOT) com>Subject: Re: A newbie from Washington StateTo: Breathe-Support@ yahoogroups. comDate: Sunday, December 6, 2009, 2:48 AM

Thank you, Beth

Wow, you really have a great group going here I hardly can keep up with the reading. I work a lot on the computer and love to make websites and doing research. I really was amazed that I did not know with all the reading I had done before getting in this group that we had some great IPF doctors here in Washington State.

My diagnosis is strange to me as it says fibrosis and then my Pulmonologist says it cellular from all I have been reading and making some in PDF files so I can have them handy. Cellular NSIP does not have fibrosis. I also understand that there are all kinds of variants to this disease. I do have my little diagnosis from the biopsy on the web. The strangest part was that when I saw the pulmonologist who explained that I first had plain NSIP and then the surgeon who gave me the diagnosis from the biopsy. It was almost like he said this is the biopsy but let someone interpreted more. Two weeks later when he understood that I was looking in Medical website because I have a medical license….

(As

counselor so some of it does not make sense at all) He decided at once I had cellular NSIP.

But here I have this paper in my hand that talks about fibrosis especially in the lower lobe. The real problem I have with the diagnosis is that he will not look further why I have this. Per example familial I have three family members who have died from lung disease. And I have a diaphragm that is not working right with other symptoms of some kind of connective tissue disorder. From my understanding this is the one of the first actions to take if you have a diagnosis of NSIP. "Recent Advances in the Diagnosis and Management of Nonspecific Interstitial Pneumonia" if you cannot get into this I can upload or give you a link from site

where click this

link PDF file is on. You guys are just great people are sometimes just better together then all the research in the world, thank you again, Erna

>> Erna,> Welcome to Breathe Support. As glad as I am that you have found us I am sorry that you had reason to look for a group like this. > You are correct in that many of us have had a long and difficult road to diagnosis. It does sound however as though you've made progress in that area. > The positive news for you is that you apparently have one of the more treatable types of these diseases. Cellular nsip is among the most responsive to therapy with steroids. Hypersensitivity pneumonitis is also often treated with steroids with a good deal of success in stablizing the disease.> We have lots of members in the pacific northwest with several in Washington state. I'm certain they will chime in with ideas and recommendations for doctors etc. Several of our members have sought

treatment at UWMC. It is a pulmonary fibrosis "Center of Excellence" and the team there led by Dr. Ganesh Raghu is very well thought of by many. You might want to strongly consider being evaluated there in order to get all the relevent information and the best next steps to take. > > Please continue reading and communicating with us. You are not alone in this fight!> > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08>  >  > > > > > ____________ _________ _________ __> From: Erna vrolijk50@.. .> To: Breathe-Support@ yahoogroups. com> Sent: Sat, December 5, 2009 2:44:04 AM> Subject: A newbie from Washington State> >  > Hi, All > I am new in the group. I still do not know what to tell people what I have right now. I do not even believe

the Pulmonologist and the pulmonology therapist know what it is. > I was finally had my lung biopsy at the VM in Seattle WA on October 23, I was told that it probably would take weeks and would be sent to the east before I had a diagnosis. But a week later I had a note in my hand with NSIP and hypersensitivity pneumonitis as a secondary diagnosis. > The road has been long, I have been silently reading all the e-mails and see most people had a hard road to their diagnosis and then just to find out that you can do basically nothing about it. > Since I also have heart disease and my cardiologist did not get to well along with my pulmonlogist and did not want to take me of the plavix that I have to be on for the rest of my life also. I finally came from up north Washington State down to Seattle. > Still here in the small cities no one knows not even the medical profession seems to care. Per example yesterday I ended for a blood

pressure drop in the local hospital where I am doing my pulmonology therapy. The therapist explained the E.R doctor my lung disease was  to hard to explain.  All they could think of was heart and they would not give me my medications for my lungs actually just a few for my heart this morning. I was put in the ICU but did not see a doctor until this morning. He did not examine me but the nurses had already done this.  I could not stop coughing and had chest pain…… It is already hard enough to know if there is something wrong with your heart or lungs and I still do not understand either why the lung specialist are in the same area as the cardiologist. > I would love to hear from other people what they say when they are diagnosed with NSIP? I see many on the board who do. My pulmonologist f irst said just NSIP and now he says cellular NSIP. We have a lot of lung problem on my Moms site of the family. The

surgeon gave me a copy of the report and there it says fibrosis at many places. I may have to change pulmologist again as I am thinking of moving in a big city and Seattle is to expensive for me…. And may need to move east ( p.s my first language is Dutch if you see any mistakes) > I am about to move to city somewhere if the housing market was not so bad. And I had good energy not on O2 for the rest of my life…. But I believe I can get passed the O2 part…. I have done some camping trips with it even before I was diagnosed. But I was not on 24 to 7 then either. > Please keep up the good work talking I am learning so much from you!! > I do not see a groups in Washington state does anyone know if there are any in my range. Thank you, Erna> > > Erna> 1992 bird fanciers syndrome > CAD & MI 2004 > ILD 2008 NSIP 2009 > Washington State>

[Guest guest]

, I just want to get this over with before the 23rd. That's when I am going over there.I guess I would like to hibernate from the cold too. The cold never bothered me over there much. But here it has been in the teens in the daytime and below 0 at night.Beverley Joy,71, UIP,NSIP 1-09,Diabetes,Sjogren's,Fibromyalgia Idaho

From: vrolijk50 <vrolijk50 (AT) yahoo (DOT) com>Subject: Re: A newbie from Washington StateTo: Breathe-Support@ yahoogroups. comDate: Sunday, December 6, 2009, 2:48 AM

Thank you, Beth

Wow, you really have a great group going here I hardly can keep up with the reading. I work a lot on the computer and love to make websites and doing research. I really was amazed that I did not know with all the reading I had done before getting in this group that we had some great IPF doctors here in Washington State.

My diagnosis is strange to me as it says fibrosis and then my Pulmonologist says it cellular from all I have been reading and making some in PDF files so I can have them handy. Cellular NSIP does not have fibrosis. I also understand that there are all kinds of variants to this disease. I do have my little diagnosis from the biopsy on the web. The strangest part was that when I saw the pulmonologist who explained that I first had plain NSIP and then the surgeon who gave me the diagnosis from the biopsy. It was almost like he said this is the biopsy but let someone interpreted more. Two weeks later when he understood that I was looking in Medical website because I have a medical license….

(As

counselor so some of it does not make sense at all) He decided at once I had cellular NSIP.

But here I have this paper in my hand that talks about fibrosis especially in the lower lobe. The real problem I have with the diagnosis is that he will not look further why I have this. Per example familial I have three family members who have died from lung disease. And I have a diaphragm that is not working right with other symptoms of some kind of connective tissue disorder. From my understanding this is the one of the first actions to take if you have a diagnosis of NSIP. "Recent Advances in the Diagnosis and Management of Nonspecific Interstitial Pneumonia" if you cannot get into this I can upload or give you a link from site where click

this

link PDF file is on.

You guys are just great people are sometimes just better together then all the research in the world, thank you again, Erna

>> Erna,> Welcome to Breathe Support. As glad as I am that you have found us I am sorry that you had reason to look for a group like this. > You are correct in that many of us have had a long and difficult road to diagnosis. It does sound however as though you've made progress in that area. > The positive news for you is that you apparently have one of the more treatable types of these diseases. Cellular nsip is among the most responsive to therapy with steroids. Hypersensitivity pneumonitis is also often treated with steroids with a good deal of success in stablizing the disease.> We have lots of members in the pacific northwest with several in Washington state. I'm certain they will chime in with ideas and recommendations for doctors etc. Several of our members have sought

treatment at UWMC. It is a pulmonary fibrosis "Center of Excellence" and the team there led by Dr. Ganesh Raghu is very well thought of by many. You might want to strongly consider being evaluated there in order to get all the relevent information and the best next steps to take. > > Please continue reading and communicating with us. You are not alone in this fight!> > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08>  >  > > > > > ____________ _________ _________ __> From: Erna vrolijk50@.. .> To: Breathe-Support@ yahoogroups. com> Sent: Sat, December 5, 2009 2:44:04 AM> Subject: A newbie from Washington State> >  > Hi, All > I am new in the group. I still do not know what to tell people what I have right now. I do not even believe

the Pulmonologist and the pulmonology therapist know what it is. > I was finally had my lung biopsy at the VM in Seattle WA on October 23, I was told that it probably would take weeks and would be sent to the east before I had a diagnosis. But a week later I had a note in my hand with NSIP and hypersensitivity pneumonitis as a secondary diagnosis. > The road has been long, I have been silently reading all the e-mails and see most people had a hard road to their diagnosis and then just to find out that you can do basically nothing about it. > Since I also have heart disease and my cardiologist did not get to well along with my pulmonlogist and did not want to take me of the plavix that I have to be on for the rest of my life also. I finally came from up north Washington State down to Seattle. > Still here in the small cities no one knows not even the medical profession seems to care. Per example yesterday I ended for a blood

pressure drop in the local hospital where I am doing my pulmonology therapy. The therapist explained the E.R doctor my lung disease was  to hard to explain.  All they could think of was heart and they would not give me my medications for my lungs actually just a few for my heart this morning. I was put in the ICU but did not see a doctor until this morning. He did not examine me but the nurses had already done this.  I could not stop coughing and had chest pain…… It is already hard enough to know if there is something wrong with your heart or lungs and I still do not understand either why the lung specialist are in the same area as the cardiologist. > I would love to hear from other people what they say when they are diagnosed with NSIP? I see many on the board who do. My pulmonologist f irst said just NSIP and now he says cellular NSIP. We have a lot of lung problem on my Moms site of the family. The

surgeon gave me a copy of the report and there it says fibrosis at many places. I may have to change pulmologist again as I am thinking of moving in a big city and Seattle is to expensive for me…. And may need to move east ( p.s my first language is Dutch if you see any mistakes) > I am about to move to city somewhere if the housing market was not so bad. And I had good energy not on O2 for the rest of my life…. But I believe I can get passed the O2 part…. I have done some camping trips with it even before I was diagnosed. But I was not on 24 to 7 then either. > Please keep up the good work talking I am learning so much from you!! > I do not see a groups in Washington state does anyone know if there are any in my range. Thank you, Erna> > > Erna> 1992 bird fanciers syndrome > CAD & MI 2004 > ILD 2008 NSIP 2009 > Washington State>

[Guest guest]

Hi Beverley,

Is driving you? So are you going to your daughter's in Gig Harbor on the 23rd? Will be driving you to the motel in Seattle the night before your appt. at UWMC? C_53_Familial IPF_5/09Washington

To: Breathe-Support Sent: Thu, December 10, 2009 1:47:37 PMSubject: Re: Re: A newbie from Washington State

, I just want to get this over with before the 23rd. That's when I am going over there.I guess I would like to hibernate from the cold too. The cold never bothered me over there much. But here it has been in the teens in the daytime and below 0 at night.Beverley Joy,71, UIP,NSIP 1-09,Diabetes, Sjogren's, Fibromyalgia Idaho

From: vrolijk50 <vrolijk50 (AT) yahoo (DOT) com>Subject: Re: A newbie from Washington StateTo: Breathe-Support@ yahoogroups. comDate: Sunday, December 6, 2009, 2:48 AM

Thank you, Beth

Wow, you really have a great group going here I hardly can keep up with the reading. I work a lot on the computer and love to make websites and doing research. I really was amazed that I did not know with all the reading I had done before getting in this group that we had some great IPF doctors here in Washington State.

My diagnosis is strange to me as it says fibrosis and then my Pulmonologist says it cellular from all I have been reading and making some in PDF files so I can have them handy. Cellular NSIP does not have fibrosis. I also understand that there are all kinds of variants to this disease. I do have my little diagnosis from the biopsy on the web. The strangest part was that when I saw the pulmonologist who explained that I first had plain NSIP and then the surgeon who gave me the diagnosis from the biopsy. It was almost like he said this is the biopsy but let someone interpreted more. Two weeks later when he understood that I was looking in Medical website because I have a medical license…. (As

counselor so some of it does not make sense at all) He decided at once I had cellular NSIP.

But here I have this paper in my hand that talks about fibrosis especially in the lower lobe. The real problem I have with the diagnosis is that he will not look further why I have this. Per example familial I have three family members who have died from lung disease. And I have a diaphragm that is not working right with other symptoms of some kind of connective tissue disorder. From my understanding this is the one of the first actions to take if you have a diagnosis of NSIP. "Recent Advances in the Diagnosis and Management of Nonspecific Interstitial Pneumonia" if you cannot get into this I can upload or give you a link from site where click this

link PDF file is on.

You guys are just great people are sometimes just better together then all the research in the world, thank you again, Erna

>> Erna,> Welcome to Breathe Support. As glad as I am that you have found us I am sorry that you had reason to look for a group like this. > You are correct in that many of us have had a long and difficult road to diagnosis. It does sound however as though you've made progress in that area. > The positive news for you is that you apparently have one of the more treatable types of these diseases. Cellular nsip is among the most responsive to therapy with steroids. Hypersensitivity pneumonitis is also often treated with steroids with a good deal of success in stablizing the disease.> We have lots of members in the pacific northwest with several in Washington state. I'm certain they will chime in with ideas and recommendations for doctors etc. Several of our members have sought

treatment at UWMC. It is a pulmonary fibrosis "Center of Excellence" and the team there led by Dr. Ganesh Raghu is very well thought of by many. You might want to strongly consider being evaluated there in order to get all the relevent information and the best next steps to take. > > Please continue reading and communicating with us. You are not alone in this fight!> > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08>  >  > > > > > ____________ _________ _________ __> From: Erna vrolijk50@.. .> To: Breathe-Support@ yahoogroups. com> Sent: Sat, December 5, 2009 2:44:04 AM> Subject: A newbie from Washington State> >  > Hi, All > I am new in the group. I still do not know what to tell people what I have right now. I do not even believe

the Pulmonologist and the pulmonology therapist know what it is. > I was finally had my lung biopsy at the VM in Seattle WA on October 23, I was told that it probably would take weeks and would be sent to the east before I had a diagnosis. But a week later I had a note in my hand with NSIP and hypersensitivity pneumonitis as a secondary diagnosis. > The road has been long, I have been silently reading all the e-mails and see most people had a hard road to their diagnosis and then just to find out that you can do basically nothing about it. > Since I also have heart disease and my cardiologist did not get to well along with my pulmonlogist and did not want to take me of the plavix that I have to be on for the rest of my life also. I finally came from up north Washington State down to Seattle. > Still here in the small cities no one knows not even the medical profession seems to care. Per example yesterday I ended for a blood

pressure drop in the local hospital where I am doing my pulmonology therapy. The therapist explained the E.R doctor my lung disease was  to hard to explain.  All they could think of was heart and they would not give me my medications for my lungs actually just a few for my heart this morning. I was put in the ICU but did not see a doctor until this morning. He did not examine me but the nurses had already done this.  I could not stop coughing and had chest pain…… It is already hard enough to know if there is something wrong with your heart or lungs and I still do not understand either why the lung specialist are in the same area as the cardiologist. > I would love to hear from other people what they say when they are diagnosed with NSIP? I see many on the board who do. My pulmonologist f irst said just NSIP and now he says cellular NSIP. We have a lot of lung problem on my Moms site of the family. The

surgeon gave me a copy of the report and there it says fibrosis at many places. I may have to change pulmologist again as I am thinking of moving in a big city and Seattle is to expensive for me…. And may need to move east ( p.s my first language is Dutch if you see any mistakes) > I am about to move to city somewhere if the housing market was not so bad. And I had good energy not on O2 for the rest of my life…. But I believe I can get passed the O2 part…. I have done some camping trips with it even before I was diagnosed. But I was not on 24 to 7 then either. > Please keep up the good work talking I am learning so much from you!! > I do not see a groups in Washington state does anyone know if there are any in my range. Thank you, Erna> > > Erna> 1992 bird fanciers syndrome > CAD & MI 2004 > ILD 2008 NSIP 2009 > Washington State>

[Guest guest]

. Yes, Bob is driving me to my daughters and to the motel. All of a sudden it is coming up too soon. I would like to meet you before we meet at the University if we can manage it. I don't know if Bob will stay with me for Christmas or if he will go on to his son's house in Anacortes. And he will be going to his boat in Oak Harbor.. Maybe my daughter can take me to meet you somewhere. Beverley Joy,71, UIP,NSIP 1-09,Diabetes,Sjogren's,Fibromyalgia Idaho

From: vrolijk50 <vrolijk50 (AT) yahoo (DOT) com>Subject: Re: A newbie from Washington StateTo: Breathe-Support@ yahoogroups. comDate: Sunday, December 6, 2009, 2:48 AM

Thank you, Beth

Wow, you really have a great group going here I hardly can keep up with the reading. I work a lot on the computer and love to make websites and doing research. I really was amazed that I did not know with all the reading I had done before getting in this group that we had some great IPF doctors here in Washington State.

My diagnosis is strange to me as it says fibrosis and then my Pulmonologist says it cellular from all I have been reading and making some in PDF files so I can have them handy. Cellular NSIP does not have fibrosis. I also understand that there are all kinds of variants to this disease. I do have my little diagnosis from the biopsy on the web. The strangest part was that when I saw the pulmonologist who explained that I first had plain NSIP and then the surgeon who gave me the diagnosis from the biopsy. It was almost like he said this is the biopsy but let someone interpreted more. Two weeks later when he understood that I was looking in Medical website because I have a medical license….

(As

counselor so some of it does not make sense at all) He decided at once I had cellular NSIP.

But here I have this paper in my hand that talks about fibrosis especially in the lower lobe. The real problem I have with the diagnosis is that he will not look further why I have this. Per example familial I have three family members who have died from lung disease. And I have a diaphragm that is not working right with other symptoms of some kind of connective tissue disorder. From my understanding this is the one of the first actions to take if you have a diagnosis of NSIP. "Recent Advances in the Diagnosis and Management of Nonspecific Interstitial Pneumonia" if you cannot get into this I can upload or give you a link from site where click

this

link PDF file is on.

You guys are just great people are sometimes just better together then all the research in the world, thank you again, Erna

>> Erna,> Welcome to Breathe Support. As glad as I am that you have found us I am sorry that you had reason to look for a group like this. > You are correct in that many of us have had a long and difficult road to diagnosis. It does sound however as though you've made progress in that area. > The positive news for you is that you apparently have one of the more treatable types of these diseases. Cellular nsip is among the most responsive to therapy with steroids. Hypersensitivity pneumonitis is also often treated with steroids with a good deal of success in stablizing the disease.> We have lots of members in the pacific northwest with several in Washington state. I'm certain they will chime in with ideas and recommendations for doctors etc. Several of our members have sought

treatment at UWMC. It is a pulmonary fibrosis "Center of Excellence" and the team there led by Dr. Ganesh Raghu is very well thought of by many. You might want to strongly consider being evaluated there in order to get all the relevent information and the best next steps to take. > > Please continue reading and communicating with us. You are not alone in this fight!> > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08>  >  > > > > > ____________ _________ _________ __> From: Erna vrolijk50@.. .> To: Breathe-Support@ yahoogroups. com> Sent: Sat, December 5, 2009 2:44:04 AM> Subject: A newbie from Washington State> >  > Hi, All > I am new in the group. I still do not know what to tell people what I have right now. I do not even believe

the Pulmonologist and the pulmonology therapist know what it is. > I was finally had my lung biopsy at the VM in Seattle WA on October 23, I was told that it probably would take weeks and would be sent to the east before I had a diagnosis. But a week later I had a note in my hand with NSIP and hypersensitivity pneumonitis as a secondary diagnosis. > The road has been long, I have been silently reading all the e-mails and see most people had a hard road to their diagnosis and then just to find out that you can do basically nothing about it. > Since I also have heart disease and my cardiologist did not get to well along with my pulmonlogist and did not want to take me of the plavix that I have to be on for the rest of my life also. I finally came from up north Washington State down to Seattle. > Still here in the small cities no one knows not even the medical profession seems to care. Per example yesterday I ended for a blood

pressure drop in the local hospital where I am doing my pulmonology therapy. The therapist explained the E.R doctor my lung disease was  to hard to explain.  All they could think of was heart and they would not give me my medications for my lungs actually just a few for my heart this morning. I was put in the ICU but did not see a doctor until this morning. He did not examine me but the nurses had already done this.  I could not stop coughing and had chest pain…… It is already hard enough to know if there is something wrong with your heart or lungs and I still do not understand either why the lung specialist are in the same area as the cardiologist. > I would love to hear from other people what they say when they are diagnosed with NSIP? I see many on the board who do. My pulmonologist f irst said just NSIP and now he says cellular NSIP. We have a lot of lung problem on my Moms site of the family. The

surgeon gave me a copy of the report and there it says fibrosis at many places. I may have to change pulmologist again as I am thinking of moving in a big city and Seattle is to expensive for me…. And may need to move east ( p.s my first language is Dutch if you see any mistakes) > I am about to move to city somewhere if the housing market was not so bad. And I had good energy not on O2 for the rest of my life…. But I believe I can get passed the O2 part…. I have done some camping trips with it even before I was diagnosed. But I was not on 24 to 7 then either. > Please keep up the good work talking I am learning so much from you!! > I do not see a groups in Washington state does anyone know if there are any in my range. Thank you, Erna> > > Erna> 1992 bird fanciers syndrome > CAD & MI 2004 > ILD 2008 NSIP 2009 > Washington State>