Re: A newbie from Washington State

December 5, 2009

Miranda

I happen to noitice it looks like you are in LA. I am heading out to UCLA on the 14th of this month and would love to talk to someone my age with this disease it looks like you are much younger then me when you were diagnosed how are you now? Do you go to the ILD clinic at UCLA and if so what do you think of it?Your name caught my attention as I have a 12yo daughter named Miranda. Well just wondering what you thought of the clinic if you go there. I will be staying in culver city with my Aunt while I am there not sure if this is close to where you are or even if you are up for meeting someone new. Just thought I would try and touch base with you Tammy 35y.o. Omaha, NE UIP 11/09

To: Breathe-Support Sent: Sat, December 5, 2009 9:13:45 AMSubject: A newbie from Washington State

Ema,

I am so sorry to hear about what you have and are going through. I have IPF and the best place in WA for you to go is to UWMC in Seattle. Have you been to see Dr. Raghu ? I was being treated by him and his team but needed more help from my family so had to move to CA. Here is a link to his profile and publications. http://www.medical. washington. edu/bios/ view.aspx? CentralId= 23131

Hope this helps. If you need to talk I am here.

Miranda

LA / 29yrs old

IPF 05

December 5, 2009

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

To: Breathe-Support Sent: Sat, December 5, 2009 2:44:04 AMSubject: 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 painâ€¦â€¦ 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 meâ€¦. 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 lifeâ€¦. But I believe I can get passed the O2 partâ€¦. 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

December 5, 2009

ï»¿

Hi Erna... welcome to our group. You no doubt remember many of us just by reading our posts as you say you've been doing.

If it is possible, go to the UWMC there in Seattle. They are rated number 2 now in Centers of Excellence. Quite a few of us see Dr. Raghu there but there are other wonderful drs. as well.

I was first dx (diagnosed)March 2006, with idiopathic pulmonary fibrosis then this past Oct, after seeing Dr. Raghu, he changed the dx to NSIP. I have the cellular...there is a second strain of fibrotic NSIP. It's all PF> there are over 200 different strains.

NSIP, and particularly the cellular is a very slow progressing strain.

This is the main reason that Dr. Raghu changed my dx...little to no progression.

There are quite a few members living in WA. I live in OR...about 25 miles S. of Portland.

Go to the database on the web site and you can browse there and see where our members are.

YOu are in the best place you can be now, as we fight our mutual illness. Hang in there. Your lung bio is over so now keep doing whatever research you think necessary.

Actually, there is nothing we can do but neither are we going to die next month!

You've got lots of company now.

Keep on keepin' on.

MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there!

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 painâ€¦â€¦ 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 meâ€¦. 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 lifeâ€¦. But I believe I can get passed the O2 partâ€¦. 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

December 5, 2009

Hi Erna, Welcome to the group! I'm sorry you're in the hospital and wish you a speedy recovery.

I live in Grapeview, Washington about 30 miles from Bremerton, which is a ferry ride away from Seattle. What City are you residing in?

I have a very good pulmonary specialist, Dr. Sandbloom at the Bellevue Medical Center (very near Seattle) and I also see the Chief Lung Specialist, Dr. Ganesh Ragu at the University of Washington Medical Center in Seattle, as do a few other members of this group. You definitely want to get an appointment at the UWMC as soon as possible! They will do a thorough evaluation and help ease your mind about how to treat. Or at the very least a good pulmonary doctor that knows about NSIP/IPF!

I was diagnosed in May 09 with Familial Idiopathic Pulmonary Fibrosis (IPF). My younger brother had IPF and died at age 43 of respiratory failure. There is no real treatment for IPF other than a trial of medications, which may or may not help and a lung transplant.

The other doctors even cardiologists you come across will NOT know much if anything about NSIP or IPF. It's no so much that they don't care, its just that they have their own specialities and just don't know about this rare lung disease we all have. That's why its important for you to have a good pulmo doc who does know and understand and explain your test results with you.

There is a lung support group at the UWMC; they only meet once/month. I haven't been able to make it to one of their meetings yet. There might be others over there in Seattle I just don't know about. There is a lung support group that meets here on my side of the water, but they only meet quarterly, and it wouldn't be specific to IPF or PF so I haven't gone to that either.

Maybe we can meet.

C_53_Familial IPF_5/09Washington

To: Breathe-Support Sent: Fri, December 4, 2009 11:44:04 PMSubject: 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 painâ€¦â€¦ 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 meâ€¦. 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 lifeâ€¦. But I believe I can get passed the O2 partâ€¦. 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

December 6, 2009

Thank you, Patti

I have done some research but there is nothing as important as talking to people. I know Doctors are people also (lol) but somehow they learned to be distant and not able to talk about emotions. My Job was talking about emotions, feelings and how to deal with them. I believe all Physicians should have classes in human services and counseling but at least required to read these Chat groups. Wow, I must be living in a dream land, Erna

>> 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>

December 6, 2009

Hi, Miranda

I am sorry to hear you had to move from your great pulmonologist!! I have seen his name before in this group and read an article from Ganesh Raghu about Pirfenidone before I saw his name in this group while I was reading posts. I have been very interested in Pirfenidone since prednisone is the most horrible drug in the world for me. My pulmonologist even though he knows I should take at least 40 mg and AZA is slowly building me up from 10 mg and see how well I will tolerate it now. 10 years ago I got Cushing's Syndrome from also small doses of prednisone. I had high level of cortisol in my urine analysis also. My mental health took a nose dive and became normal again after the prednisone was stopped. Which at the same time they stopped everything and let this disease progress. I did not have many symptoms from the time around 2000 after I had needed to leave my home because of a hypersensitivity to the insulation they put in my home. The docs told me that I needed to leave my home or would die but only explained it as an allergy. From then on I only knew something was wrong if I was sensitive to it. For the last three years it has been a different story, but the cardiologist said it was my heart but could not find a thing…. So, now I finally got a diagnosis which is great being on oxygen and all it now looks like I need to switch doctors again. I was almost thinking of moving to Pittsburgh, PA until I saw others posting about doctor Ganesh Raghu Dang how can I do this again?

I hope you can find a good doctor in California it looks like someone is giving you a suggestion already. thank you and Take care, Erna

>> Ema,> > I am so sorry to hear about what you have and are going through. I have IPF and the best place in WA for you to go is to UWMC in Seattle. Have you been to see Dr. Raghu ? I was being treated by him and his team but needed more help from my family so had to move to CA. Here is a link to his profile and publications. http://www.medical.washington.edu/bios/view.aspx?CentralId=23131> > Hope this helps. If you need to talk I am here. > Miranda> LA / 29yrs old> IPF 05>

December 6, 2009

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 aÂ long and difficult road to diagnosis. It does soundÂ however as though you've made progress in that area. > The positive news for you is that youÂ apparently have one of the more treatable types of these diseases. Cellular nsip is among the most responsive to therapy with steroids. Hypersensitivity pneumonitis isÂ also often treated with steroids with a good deal of success in stablizing the disease.> We have lots of members in the pacific northwest withÂ several in Washington state.Â I'm certain they will chime in with ideas and recommendations for doctors etc. Several of our members have sought treatmentÂ 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 nextÂ steps to take.Â > > Please continue reading and communicating with us. You are not alone in this fight!> > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> Â > Â > > > > > ________________________________> To: Breathe-Support > Sent: Sat, December 5, 2009 2:44:04 AM> Subject: A newbie from Washington State> > Â > 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 Â to hard to explain. Â 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. Â I could not stop coughing and had chest painâ€¦â€¦ 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.Â 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 meâ€¦. 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 lifeâ€¦. But I believe I can get passed the O2 partâ€¦. 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.Â Thank you, Erna> > > Erna> 1992 bird fanciers syndrome > CAD & MI 2004 > ILD 2008 NSIP 2009 > Washington State>

December 6, 2009

Hi,

How wonderful to see someone from this state. I noticed that you live basically on the Olympic Peninsula. But you do not seem to have to drive all the way around and can go with ferries.

You gave me some great Idea's that I could keep my own pulmonologist and then see Dr. Ganesh Raghu also. It is very hard driving to Seattle for me from Mount Vernon all the time. Right now all my Doctors are at Virginia Mason in order to get this biopsy done.

My partner who knew I had heart problems before I met him three years ago and I could out walk him at once is a care taker and is driving me back and forth and then on top we have to pay 16 to 20 dollars for parking. I have to go on Monday again the cardiology nurse was distressed with the treatment I received and the way they had discharged me. Still the same symptoms……

Yes, I do understand it is all keeping the illness in checks and balances….. Sort of….. and some of them it goes very fast. I am sorry to hear your brother died from this illness and you have it now also. (Darn)

Do you know if the group at UWMC is IPF specific? I would love to go and see. Right now I am a little upset with COPD. As I cannot even understand that a pulmonologist therapist would not know what it is and explains my cough is from mucous……. Darn, I just wished I could spit some up (lol). The oxygen actually has helped with the coughing a lot right now and I am on 10mg of prednisone that makes me pull out my hair at times and my partner live in another house. But then I was forewarned by previous experiences.

Oh, I have to go to bed, I am way over time, 3.20???

I would love to meet,(smile) I like to driving around camping and going to places…… the oxygen is a hassle but I am getting used to it…. Take care, Erna>> Hi Erna, Welcome toÂ the group!Â Â I'm sorry you're in the hospital and wish you a speedy recovery.> > I live in Grapeview, WashingtonÂ about 30Â miles from Bremerton, which is a ferry ride away from Seattle.Â What City are you residing in?> > I have aÂ very good pulmonary specialist, Dr. Sandbloom at the Bellevue Medical Center (very near Seattle) and I also see the Chief Lung Specialist, Dr. Ganesh Ragu at the University of Washington Medical Center in Seattle, as do a few other members of this group.Â You definitely want to get an appointment at the UWMC as soon as possible!Â They will do a thorough evaluation and help ease your mind about how to treat. Or at the very least a good pulmonary doctor that knows about NSIP/IPF! > > I was diagnosed in May 09 with Familial Idiopathic Pulmonary Fibrosis (IPF).Â Â My younger brother had IPF and died at age 43 of respiratory failure. There is no real treatment for IPF other than a trial of medications, which may or may not help and a lung transplant. > > The other doctors even cardiologists you come across will NOT know much if anything about NSIP or IPF. It's no so much that they don't care, its just that they have their own specialities and just don't know about this rare lung disease we all have. That's why its important for you to have a good pulmo doc who does know and understand and explain your test results with you.Â > > There is a lung support group at the UWMC; they only meet once/month. I haven't been able to make it to one of their meetings yet. There might be others over there in Seattle I just don't know about. There is a lung support group that meetsÂ here on my side of the water, but they only meet quarterly, and it wouldn't be specific to IPF or PF so I haven't gone to that either. > > Maybe we can meet.> C_53_Familial IPF_5/09> Washington> > > > > > ________________________________> To: Breathe-Support > Sent: Fri, December 4, 2009 11:44:04 PM> Subject: A newbie from Washington State> > Â > 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 Â to hard to explain. Â 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. Â I could not stop coughing and had chest painâ€¦â€¦ 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.Â 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 meâ€¦. 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 lifeâ€¦. But I believe I can get passed the O2 partâ€¦. 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.Â Thank you, Erna> > > Erna> 1992 bird fanciers syndrome > CAD & MI 2004 > ILD 2008 NSIP 2009 > Washington State>

December 6, 2009

Erna,

I'm glad you are benefitting and gaining information from the group. Although I am biased I will have to agree that we do have a fabulous group!

You have a complex medical situation and I strongly urge you to get to UWMC or another university medical center with an interstitial lung disease program. I understand you are doing alot of reading and that's important. I would caution you however about taking what you read and applying it directly to your own situation. There is minimal research regarding the variations in nsip and so the information you will find limited and not necessarily relevent to your own specific situation

With regard to Pirfenidone, please understand that the recently completed clinical trials only involved IPF. When/if pirfenidone is approved by the FDA it will only be approved for use in IPF/UIP, not for nsip.

I'm so happy that you have joined us here. Please keep reading and asking questions as they come to mind. We are all in this together!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sun, December 6, 2009 5:48:16 AMSubject: Re: A newbie from Washington State

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 licenseâ€¦. (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 aÃ‚ long and difficult road to diagnosis. It does soundÃ‚ however as though you've made progress in that area. > The positive news for you is that youÃ‚ apparently have one of the more treatable types of these diseases. Cellular nsip is among the most responsive to therapy with steroids. Hypersensitivity pneumonitis isÃ‚ also often treated with steroids with a good deal of success in stablizing the disease.> We have lots of members in the pacific northwest withÃ‚ several in Washington state.Ã‚ I'm certain they will chime in with ideas and recommendations for doctors etc. Several of our members have sought

treatmentÃ‚ 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 nextÃ‚ steps to take.Ã‚ > > Please continue reading and communicating with us. You are not alone in this fight!> > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> Ã‚ > Ã‚ > > > > > ____________ _________ _________ __> From: Erna vrolijk50@.. .> To: Breathe-Support@ yahoogroups. com> Sent: Sat, December 5, 2009 2:44:04 AM> Subject: A newbie from Washington State> > Ã‚ > 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 Ã‚ to hard to explain. Ã‚ 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. Ã‚ I could not stop coughing and had chest painÃ¢â‚¬Â¦Ã¢â‚¬Â¦ 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.Ã‚ 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 meÃ¢â‚¬Â¦. 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 lifeÃ¢â‚¬Â¦. But I believe I can get passed the O2 partÃ¢â‚¬Â¦. 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.Ã‚ Thank you, Erna> > > Erna> 1992 bird fanciers syndrome > CAD & MI 2004 > ILD 2008 NSIP 2009 > Washington State>

December 6, 2009

can you imagine how long a doctor would last if he or she got emotional about every patient

they wouldn't be able to practice medicine

if would too upsetting everytime they lost one

maybe they force themselves to distance themselves

besides, some personalities are just warmer than others

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: A newbie from Washington StateTo: Breathe-Support Date: Sunday, December 6, 2009, 3:45 AM

Thank you, Patti

I have done some research but there is nothing as important as talking to people. I know Doctors are people also (lol) but somehow they learned to be distant and not able to talk about emotions. My Job was talking about emotions, feelings and how to deal with them. I believe all Physicians should have classes in human services and counseling but at least required to read these Chat groups. Wow, I must be living in a dream land, Erna

>> 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>

December 6, 2009

My pulmo doc once said to me, "I wish I knew you as a friend, not a patient." I gave him a hug and almost cried when he said that. C_53_Familial IPF_5/09Washington

To: Breathe-Support Sent: Sun, December 6, 2009 6:26:14 AMSubject: Re: Re: A newbie from Washington State

can you imagine how long a doctor would last if he or she got emotional about every patient

they wouldn't be able to practice medicine

if would too upsetting everytime they lost one

maybe they force themselves to distance themselves

besides, some personalities are just warmer than others

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: vrolijk50 <vrolijk50 (AT) yahoo (DOT) com>Subject: Re: A newbie from Washington StateTo: Breathe-Support@ yahoogroups. comDate: Sunday, December 6, 2009, 3:45 AM

Thank you, Patti

I have done some research but there is nothing as important as talking to people. I know Doctors are people also (lol) but somehow they learned to be distant and not able to talk about emotions.. My Job was talking about emotions, feelings and how to deal with them. I believe all Physicians should have classes in human services and counseling but at least required to read these Chat groups. Wow, I must be living in a dream land, Erna

>> 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>

December 6, 2009

Oh .....that is one caring doctor!!

Patti, 59, Indianapolis, IPF 2007

December 6, 2009

Hi Erna,

Yes my pulmo doc and Dr. Raghu work in concert together. They actually know each other, my pulmo doc said he set up Dr. Raghu's lab at the UWMC. Dr. Raghu is a little more agressive in exhausting all the tests and procedures one can have to rule out other problems that might contribute to IPF and Dr. Sandblom places the orders.

I don't think the UWMC support group is specific to IPF, it supports all those with lung disease. They also talk about lung transplants. I can't go to the one this month, but maybe we could meet and go to the one in January?

How did you arrive in the Seattle area? Have you always lived here? C_53_Familial IPF_5/09Washington

To: Breathe-Support Sent: Sun, December 6, 2009 3:24:14 AMSubject: Re: A newbie from Washington State

Hi,

How wonderful to see someone from this state. I noticed that you live basically on the Olympic Peninsula. But you do not seem to have to drive all the way around and can go with ferries.

You gave me some great Idea's that I could keep my own pulmonologist and then see Dr. Ganesh Raghu also. It is very hard driving to Seattle for me from Mount Vernon all the time. Right now all my Doctors are at Virginia Mason in order to get this biopsy done.

My partner who knew I had heart problems before I met him three years ago and I could out walk him at once is a care taker and is driving me back and forth and then on top we have to pay 16 to 20 dollars for parking. I have to go on Monday again the cardiology nurse was distressed with the treatment I received and the way they had discharged me. Still the same symptomsâ€¦â€¦

Yes, I do understand it is all keeping the illness in checks and balancesâ€¦.. Sort ofâ€¦.. and some of them it goes very fast. I am sorry to hear your brother died from this illness and you have it now also. (Darn)

Do you know if the group at UWMC is IPF specific? I would love to go and see. Right now I am a little upset with COPD. As I cannot even understand that a pulmonologist therapist would not know what it is and explains my cough is from mucousâ€¦â€¦. Darn, I just wished I could spit some up (lol). The oxygen actually has helped with the coughing a lot right now and I am on 10mg of prednisone that makes me pull out my hair at times and my partner live in another house. But then I was forewarned by previous experiences.

Oh, I have to go to bed, I am way over time, 3.20???

I would love to meet,(smile) I like to driving around camping and going to placesâ€¦â€¦ the oxygen is a hassle but I am getting used to itâ€¦. Take care, Erna>> Hi Erna, Welcome toÃ‚ the group!Ã‚ Ã‚ I'm sorry you're in the hospital and wish you a speedy recovery.> > I live in Grapeview, WashingtonÃ‚ about 30Ã‚ miles from Bremerton, which is a ferry ride away from Seattle.Ã‚ What City are you residing in?> > I have aÃ‚ very good pulmonary specialist, Dr. Sandbloom at the Bellevue Medical Center (very near Seattle) and I also see the Chief Lung Specialist, Dr. Ganesh Ragu at the University of Washington Medical Center in Seattle, as do

a few other members of this group.Ã‚ You definitely want to get an appointment at the UWMC as soon as possible!Ã‚ They will do a thorough evaluation and help ease your mind about how to treat. Or at the very least a good pulmonary doctor that knows about NSIP/IPF! > > I was diagnosed in May 09 with Familial Idiopathic Pulmonary Fibrosis (IPF).Ã‚ Ã‚ My younger brother had IPF and died at age 43 of respiratory failure. There is no real treatment for IPF other than a trial of medications, which may or may not help and a lung transplant. > > The other doctors even cardiologists you come across will NOT know much if anything about NSIP or IPF. It's no so much that they don't care, its just that they have their own specialities and just don't know about this rare lung disease we all have. That's why its important for you to have a good pulmo doc who does know and understand and explain your test results with

you.Ã‚ > > There is a lung support group at the UWMC; they only meet once/month. I haven't been able to make it to one of their meetings yet. There might be others over there in Seattle I just don't know about. There is a lung support group that meetsÃ‚ here on my side of the water, but they only meet quarterly, and it wouldn't be specific to IPF or PF so I haven't gone to that either. > > Maybe we can meet.> C_53_Familial IPF_5/09> Washington> > > > > > ____________ _________ _________ __> From: Erna vrolijk50@.. .> To: Breathe-Support@ yahoogroups. com> Sent: Fri, December 4, 2009 11:44:04 PM> Subject: A newbie from Washington State> > Ã‚ > 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 Ã‚ to hard to explain.. Ã‚ 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. Ã‚ I could not stop coughing and had chest painÃ¢â‚¬Â¦Ã¢â‚¬Â¦ 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.Ã‚ 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 meÃ¢â‚¬Â¦. 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 lifeÃ¢â‚¬Â¦. But I believe I can get passed the O2 partÃ¢â‚¬Â¦. 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.Ã‚ Thank you, Erna> > > Erna> 1992 bird fanciers syndrome > CAD & MI 2004 > ILD 2008 NSIP 2009 > Washington

State>

December 6, 2009

Erna,

The reason your doctor doesn't look any further into the genetics (familial) of interstial lung disease is because he doesn't know, it's all in research right now. Because my brother died from IPF and my mother had emphysema in 1982 and died; he referred me and my sister to participate in a genetic reasearch study at the University of Texas Southwestern Medical Center of Human Genetics with Dr. Kim . They sent us a packet of questions and a blood sampling kit to get our blood samples to send to them. Because my brother was seen at UWMC they can get his medical records and DNA for testing. After my diagnosis my sister went and got a HRCT where they identified ILD but not necessarily any fibrosis (yet), so she too is being seen by a pulmonary specialist. Of course, we'll most likely never hear back from the research. Any conclusive data is 10 years out, but hopefully there will be

something for my children. C_53_Familial IPF_5/09Washington

To: Breathe-Support Sent: Sun, December 6, 2009 2:48:16 AMSubject: Re: A newbie from Washington State

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 licenseâ€¦. (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 aÃ‚ long and difficult road to diagnosis. It does soundÃ‚ however as though you've made progress in that area. > The positive news for you is that youÃ‚ apparently have one of the more treatable types of these diseases. Cellular nsip is among the most responsive to therapy with steroids. Hypersensitivity pneumonitis isÃ‚ also often treated with steroids with a good deal of success in stablizing the disease.> We have lots of members in the pacific northwest withÃ‚ several in Washington state.Ã‚ I'm certain they will chime in with ideas and recommendations for doctors etc. Several of our members have sought

treatmentÃ‚ 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 nextÃ‚ steps to take.Ã‚ > > Please continue reading and communicating with us. You are not alone in this fight!> > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> Ã‚ > Ã‚ > > > > > ____________ _________ _________ __> From: Erna vrolijk50@.. .> To: Breathe-Support@ yahoogroups. com> Sent: Sat, December 5, 2009 2:44:04 AM> Subject: A newbie from Washington State> > Ã‚ > 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 Ã‚ to hard to explain. Ã‚ 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. Ã‚ I could not stop coughing and had chest painÃ¢â‚¬Â¦Ã¢â‚¬Â¦ 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.Ã‚ 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 meÃ¢â‚¬Â¦. 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 lifeÃ¢â‚¬Â¦. But I believe I can get passed the O2 partÃ¢â‚¬Â¦. 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.Ã‚ Thank you, Erna> > > Erna> 1992 bird fanciers syndrome > CAD & MI 2004 > ILD 2008 NSIP 2009 > Washington State>

December 6, 2009

Erna

There are excellent doctors available to you in Pennsylvania. I've known

those who went to Pitt and much research taking place there and in

Philadelphia, the University of Pennsylvania is highly thought of and we

also have member who like Temple. Furthermore, you're not that far from

The Cleveland Clinic. So, I wouldn't hesitate to move to Pittsburgh if

thats where I'd like to live.

> >

> > Ema,

> >

> > I am so sorry to hear about what you have and are going through. I

> have IPF and the best place in WA for you to go is to UWMC in Seattle.

> Have you been to see Dr. Raghu ? I was being treated by him and his

team

> but needed more help from my family so had to move to CA. Here is a

> link to his profile and publications.

> http://www.medical.washington.edu/bios/view.aspx?CentralId=23131

> >

> > Hope this helps. If you need to talk I am here.

> > Miranda

> > LA / 29yrs old

> > IPF 05

> >

>

December 6, 2009

Erna

There are generally effective treatments for Cellular NSIP and the other

conditions which have been suggested in your case. Do not get bogged

down in all the reading about IPF or UIP since you appear to have a far

more treatable disease. Not only is Pirfenidone not approved for your

condition and has not been tested for it, there are existing treatments

so you can pursue them.

> >

> > 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 aÃ‚Â long and

difficult road to diagnosis. It does soundÃ‚Â however as though

you've made progress in that area.

> > The positive news for you is that youÃ‚Â apparently have one of

the more treatable types of these diseases. Cellular nsip is among the

most responsive to therapy with steroids. Hypersensitivity pneumonitis

isÃ‚Â also often treated with steroids with a good deal of success

in stablizing the disease.

> > We have lots of members in the pacific northwest withÃ‚Â several

in Washington state.Ã‚Â I'm certain they will chime in with ideas

and recommendations for doctors etc. Several of our members have sought

treatmentÃ‚Â 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

nextÃ‚Â steps to take.Ã‚Â

> >

> > Please continue reading and communicating with us. You are not alone

in this fight!

> >

> > Beth

> > Moderator

> > Fibrotic NSIP 06/06 Dermatomyositis 11/08

> > Ã‚Â

> >

> > ____________ _________ _________ __

> > From: Erna vrolijk50@ .

> > To: Breathe-Support@ yahoogroups. com

> > Sent: Sat, December 5, 2009 2:44:04 AM

> > Subject: A newbie from Washington State

> >

> > Ã‚Â

> > 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

Ã‚Â to hard to explain. Ã‚Â 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. Ã‚Â I could not stop coughing and had chest

painÃ¢â‚¬Â¦Ã¢â‚¬Â¦ 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.Ã‚Â 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 meÃ¢â‚¬Â¦. 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

lifeÃ¢â‚¬Â¦. But I believe I can get passed the O2 partÃ¢â‚¬Â¦.

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.Ã‚Â Thank you, Erna

> >

> > Erna

> > 1992 bird fanciers syndrome

> > CAD & MI 2004

> > ILD 2008 NSIP 2009

> > Washington State

> >

>

December 6, 2009

bruce is my ex, he was a radiologist, sorry about the confusion

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: Sunday, December 6, 2009, 9:58 AM

Huh?

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Joyce T Rosenberg <pinkrockybeach@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Sun, December 6, 2009 9:28:09 AMSubject: Re: Re: A newbie from Washington State

i do remember the first time Bruce lost a patient during a procedure. It was awful. He was so upset. It was like a family member died.

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: vrolijk50 <vrolijk50 (AT) yahoo (DOT) com>Subject: Re: A newbie from Washington StateTo: Breathe-Support@ yahoogroups. comDate: Sunday, December 6, 2009, 3:45 AM

Thank you, Patti

I have done some research but there is nothing as important as talking to people. I know Doctors are people also (lol) but somehow they learned to be distant and not able to talk about emotions. My Job was talking about emotions, feelings and how to deal with them. I believe all Physicians should have classes in human services and counseling but at least required to read these Chat groups. Wow, I must be living in a dream land, Erna

>> 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>

December 6, 2009

Thanks Joyce...I was confused. LOL

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sun, December 6, 2009 11:21:08 AMSubject: Re: Re: A newbie from Washington State

bruce is my ex, he was a radiologist, sorry about the confusion

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: vrolijk50 <vrolijk50 (AT) yahoo (DOT) com>Subject: Re: A newbie from Washington StateTo: Breathe-Support@ yahoogroups. comDate: Sunday, December 6, 2009, 3:45 AM

Thank you, Patti

I have done some research but there is nothing as important as talking to people. I know Doctors are people also (lol) but somehow they learned to be distant and not able to talk about emotions. My Job was talking about emotions, feelings and how to deal with them. I believe all Physicians should have classes in human services and counseling but at least required to read these Chat groups. Wow, I must be living in a dream land, Erna

>> 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>

December 6, 2009

Erna, I live in Idaho but I was born and lived in Washington until 5 years ago when I moved here. I am a Washingtonian at heart. I am trying to sell my house and move back but it just isn't selling. I have an appointment with Dr. Raghu on the 30th. I don't know where you live in Washington but it sounded like you are north of Seattle. Sher and I had to wait for several months to get in but lives close and she got an appointment right away. You should call and get an appointment as soon as you can. My children are all in the Seattle area and I want to go back. I am going over there for Christmas but my children live far enough from the UWMC that I will have to stay a couple of nights in a motel.My sister had Cushing syndrome or disease. I'm never sure which but she had to have radiation treatments for a long time to shrink her tumor. It's a bad

disease.Beverley Joy,71, UIP,NSIP 1-09,Diabetes,Sjogren's,Fibromyalgia IdahoSubject: Re: A newbie from Washington StateTo: Breathe-Support Date: 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 licenseâ€¦.

(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 aÃ‚ long and difficult road to diagnosis. It does soundÃ‚ however as though you've made progress in that area. > The positive news for you is that youÃ‚ apparently have one of the more treatable types of these diseases. Cellular nsip is among the most responsive to therapy with steroids. Hypersensitivity pneumonitis isÃ‚ also often treated with steroids with a good deal of success in stablizing the disease.> We have lots of members in the pacific northwest withÃ‚ several in Washington state.Ã‚ I'm certain they will chime in with ideas and recommendations for doctors etc. Several of our members have sought

treatmentÃ‚ 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 nextÃ‚ steps to take.Ã‚ > > Please continue reading and communicating with us. You are not alone in this fight!> > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> Ã‚ > Ã‚ > > > > > ____________ _________ _________ __> From: Erna vrolijk50@.. .> To: Breathe-Support@ yahoogroups. com> Sent: Sat, December 5, 2009 2:44:04 AM> Subject: A newbie from Washington State> > Ã‚ > 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 Ã‚ to hard to explain. Ã‚ 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. Ã‚ I could not stop coughing and had chest painÃ¢â‚¬Â¦Ã¢â‚¬Â¦ 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.Ã‚ 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 meÃ¢â‚¬Â¦. 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 lifeÃ¢â‚¬Â¦. But I believe I can get passed the O2 partÃ¢â‚¬Â¦. 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.Ã‚ Thank you, Erna> > > Erna> 1992 bird fanciers syndrome > CAD & MI 2004 > ILD 2008 NSIP 2009 > Washington State>

December 7, 2009

ï»¿

BJ... we talked before about a Hotel in Seattle...the rate at Quality Inn is $69. Best in the house. It's for senior and medical. Plus a big complimentary breakfast in the morning.

MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there!

A newbie from Washington State> > Ã‚ > 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 Ã‚ to hard to explain. Ã‚ 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. Ã‚ I could not stop coughing and had chest painÃ¢â‚¬Â¦Ã¢â‚¬Â¦ 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.Ã‚ 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 meÃ¢â‚¬Â¦. 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 lifeÃ¢â‚¬Â¦. But I believe I can get passed the O2 partÃ¢â‚¬Â¦. 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.Ã‚ Thank you, Erna> > > Erna> 1992 bird fanciers syndrome > CAD & MI 2004 > ILD 2008 NSIP 2009 > Washington State>

December 7, 2009

Thanks for reminding me. I need to call them today.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 licenseâ€¦. (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 aÃ‚ long and difficult road to diagnosis. It does soundÃ‚ however as though you've made progress in that area. > The positive news for you is that youÃ‚ apparently have one of the more treatable types of these diseases. Cellular nsip is among the most responsive to therapy with steroids. Hypersensitivity pneumonitis isÃ‚ also often treated with steroids with a good deal of success in stablizing the disease.> We have lots of members in the pacific northwest withÃ‚ several in Washington state.Ã‚ I'm certain they will chime in with ideas and recommendations for doctors etc. Several of our members have sought treatmentÃ‚ 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 nextÃ‚ steps to take.Ã‚ > > Please continue reading and communicating with us. You are not alone in this fight!> > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> Ã‚ > Ã‚ > > > > > ____________ _________ _________ __> From: Erna vrolijk50@.. .> To: Breathe-Support@ yahoogroups. com> Sent: Sat, December 5, 2009 2:44:04 AM> Subject: A newbie from Washington State> > Ã‚ > 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 Ã‚ to hard to explain. Ã‚ 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. Ã‚ I could not stop coughing and had chest painÃ¢â‚¬Â¦Ã¢â‚¬Â¦ 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.Ã‚ 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 meÃ¢â‚¬Â¦. 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 lifeÃ¢â‚¬Â¦. But I believe I can get passed the O2 partÃ¢â‚¬Â¦. 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.Ã‚ Thank you, Erna> > > Erna> 1992 bird fanciers syndrome > CAD & MI 2004 > ILD 2008 NSIP 2009 > Washington State>

December 7, 2009

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

> >

>

December 7, 2009

Sher

$69 sounds like great price these days

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: Monday, December 7, 2009, 5:37 PM

ï»¿ BJ... we talked before about a Hotel in Seattle...the rate at Quality Inn is $69. Best in the house. It's for senior and medical. Plus a big complimentary breakfast in the morning.

MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there!

A newbie from Washington State> > Ã‚ > 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 Ã‚ to hard to explain. Ã‚ 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. Ã‚ I could not stop coughing and had chest painÃ¢â‚¬Â¦Ã¢â‚¬Â¦ 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.Ã‚ 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 meÃ¢â‚¬Â¦. 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 lifeÃ¢â‚¬Â¦. But I believe I can get passed the O2 partÃ¢â‚¬Â¦. 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.Ã‚ Thank you, Erna> > > Erna> 1992 bird fanciers syndrome > CAD & MI 2004 > ILD 2008 NSIP 2009 > Washington State>

December 7, 2009

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 licenseâ€¦.

(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 aÃ‚ long and difficult road to diagnosis. It does soundÃ‚ however as though you've made progress in that area. > The positive news for you is that youÃ‚ apparently have one of the more treatable types of these diseases. Cellular nsip is among the most responsive to therapy with steroids. Hypersensitivity pneumonitis isÃ‚ also often treated with steroids with a good deal of success in stablizing the disease.> We have lots of members in the pacific northwest withÃ‚ several in Washington state.Ã‚ I'm certain they will chime in with ideas and recommendations for doctors etc. Several of our members have sought

treatmentÃ‚ 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 nextÃ‚ steps to take.Ã‚ > > Please continue reading and communicating with us. You are not alone in this fight!> > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> Ã‚ > Ã‚ > > > > > ____________ _________ _________ __> From: Erna vrolijk50@.. .> To: Breathe-Support@ yahoogroups. com> Sent: Sat, December 5, 2009 2:44:04 AM> Subject: A newbie from Washington State> > Ã‚ > 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 Ã‚ to hard to explain. Ã‚ 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. Ã‚ I could not stop coughing and had chest painÃ¢â‚¬Â¦Ã¢â‚¬Â¦ 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.Ã‚ 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 meÃ¢â‚¬Â¦. 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 lifeÃ¢â‚¬Â¦. But I believe I can get passed the O2 partÃ¢â‚¬Â¦. 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.Ã‚ Thank you, Erna> > > Erna> 1992 bird fanciers syndrome > CAD & MI 2004 > ILD 2008 NSIP 2009 > Washington State>

December 8, 2009

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

To: Breathe-Support Sent: 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> >>

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