Re: National Jewish called

[Guest guest]

Joyce,

That is good news! I'm so glad for you and I also would have confidence in NJ's conclusions. They have the most complete picture of your overall history in addition to your slides.

I'll keep you in my prayers that the scarring stops and stablizes. How are you feeling these days? Are you using the O2 the way you should? Please look after yourself!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Wednesday, June 24, 2009 2:41:41 AMSubject: National Jewish called

Hi everyone, National Jewish finally got th elides from my biopsy and they told me Mayo Clinic was wrong. I do NOT have IPF but my fibrosis is caused from the birds. they totally disagree with Mayo Clinic. Also Mayo clinic said I was stable but NJ said it is of concern to them that I still have fibrotic activity occuring after the birds have been removed. Dr. Cosgrove said in rare cases that happens and it should abate in a few months. Sometimes, he said, it still contnues to scar and they don't understand why. He said he wants meto have a PFT in 3 monthts and send him and my pulmonologist a copy and make an appointment at St. Jo's in Phoenix to discuss the results. Meanwhile Dr.l Cosgrove would have discussed the results with Dr. Hodges. If after 6 months the scarring has not ceased it is worrysome and I may need another visit to NJ. He said continuous scarring for enviromental fibrosis is very rare and he doesn't expect it. He said he is cautiously

optimistic. But, He assured my I don' thave IPf. Good news. He explained why they have come to a different dicision about the slides but it was all medical and I din't really understand it other then diagnosing ILD is a subtle and difficult proceedure and thought the pathologists at Mayo are world class they do not deal exclusivly with reading the results of slides from lungs and they do noth have all the information that NJ aquired while I was there. Anyway tha tis good news! Joyce Rudy AZ birds....

[Guest guest]

Hi Group, I am headed out to Kentucky this AM. I am excited to just get away for a few days. I am hoping and praying thisdoesn't prove to be to much but I will have excellent help. put new tires on my car and it drives like a new one. Don't feel one bump and for out here that is saying something.Keep us in your prayers for a few days. I'll be back the first of the week.Love to All. you all had BETTER MISS ME.... RULE # 8374633....k ! Love and Prayers, Peggy IPF 2004, FloridaWorry looks around, Sorry looks back, Faith looks up. Joyce,That is good news! I'm so glad for you and I also would have confidence in NJ's conclusions. They have the most complete picture of your overall history in addition to your slides. I'll keep you in my prayers that the scarring stops and stablizes. How are you feeling these days? Are you using the O2 the way you should? Please look after yourself! BethModeratorFibrotic NSIP 06/06 Dermatomyositis 11/08 From: greycharlie <greycharlie@q.com>To: Breathe-Support Sent: Wednesday, June 24, 2009 2:41:41 AMSubject: National Jewish called Hi everyone, National Jewish finally got th elides from my biopsy and they told me Mayo Clinic was wrong. I do NOT have IPF but my fibrosis is caused from the birds. they totally disagree with Mayo Clinic. Also Mayo clinic said I was stable but NJ said it is of concern to them that I still have fibrotic activity occuring after the birds have been removed. Dr. Cosgrove said in rare cases that happens and it should abate in a few months. Sometimes, he said, it still contnues to scar and they don't understand why. He said he wants meto have a PFT in 3 monthts and send him and my pulmonologist a copy and make an appointment at St. Jo's in Phoenix to discuss the results. Meanwhile Dr.l Cosgrove would have discussed the results with Dr. Hodges. If after 6 months the scarring has not ceased it is worrysome and I may need another visit to NJ. He said continuous scarring for enviromental fibrosis is very rare and he doesn't expect it. He said he is cautiously optimistic. But, He assured my I don' thave IPf. Good news. He explained why they have come to a different dicision about the slides but it was all medical and I din't really understand it other then diagnosing ILD is a subtle and difficult proceedure and thought the pathologists at Mayo are world class they do not deal exclusivly with reading the results of slides from lungs and they do noth have all the information that NJ aquired while I was there. Anyway tha tis good news! Joyce Rudy AZ birds....

[Guest guest]

I for one will miss your posts. Safe journey. Look forward to your posts upon your return.PJ National Jewish called

Hi everyone, National Jewish finally got th elides from my biopsy and they told me Mayo Clinic was wrong. I do NOT have IPF but my fibrosis is caused from the birds. they totally disagree with Mayo Clinic. Also Mayo clinic said I was stable but NJ said it is of concern to them that I still have fibrotic activity occuring after the birds have been removed. Dr. Cosgrove said in rare cases that happens and it should abate in a few months. Sometimes, he said, it still contnues to scar and they don't understand why. He said he wants meto have a PFT in 3 monthts and send him and my pulmonologist a copy and make an appointment at St. Jo's in Phoenix to discuss the results. Meanwhile Dr.l Cosgrove would have discussed the results with Dr. Hodges. If after 6 months the scarring has not ceased it is worrysome and I may need another visit to NJ. He said continuous scarring for enviromental fibrosis is very rare and he doesn't expect it. He said he is cautiously optimistic. But, He assured my I don' thave IPf. Good news. He explained why they have come to a different dicision about the slides but it was all medical and I din't really understand it other then diagnosing ILD is a subtle and difficult proceedure and thought the pathologists at Mayo are world class they do not deal exclusivly with reading the results of slides from lungs and they do noth have all the information that NJ aquired while I was there. Anyway tha tis good news! Joyce Rudy AZ birds....

[Guest guest]

Joyce

Thats great news to hear. I know its been a difficult path but I'm so

greatful that you went to National Jewish. Some more good lessons for

others too. The first is to definitely have your biopsy slides reviewed

by more than one pathologist including one at an IPF center of

excellence. I'm imaginging your first was at Mayo in sdale and

while they are considered great pathologists, they aren't a Center of

Excellence (Rochester is).

One of the things that happens at a center like National Jewish is the

Pathologist and the Pulmonologist actually are able to look together and

discuss, including talking about your CT's and other information in

conjunction with the slides. The pulmonologist and pathologist are able

to question each other face to face and challenge each other. My slides

were reviewed three times. I know when I went to Chicago, the

pulmonologist had questions about the accuracy of the conclusions of the

other two pathologists. However, she met with the pathologist there who

convinced her that their conclusions were correct and showed her exactly

what he based that on. In my case there were some things that were

atypical and that concerned her. The pathologist showed her that was

minimal and the overwhelming evidence was conclusive.

The other great thing you have going now is you're being followed from

this point forward. There are base lines to compare against. There are

expectations and if things vary from those experts will analyze it. You

know you're being helped by the best.

I laugh when you say below something about lots of medical things that

you didn't really understand but then you explained very clearly. I read

this entire post and I see a woman who does understand and who is now

very much in control of her medical situation. I compare it to you when

you first joined here. Through no fault of your own, you were completely

lost and confused and didn't know what was going on. You've come so far

and you're a shining example to others to ask questions, to take

control, to learn. I remember the day you made the first call to

National Jewish and you came back on line amazed and feeling so much

better.

How are you feeling now? Getting over the VATS a little week by week?

Now comes the big question. I know right after the VATS you stated

clearly you would never have done it had you known. I can assure you

that many of us have felt that way immediately after. Now that time has

passed and you've gotten results and heard from National Jewish

conclusively, how do you feel about having had the VATS?

>

> Hi everyone, National Jewish finally got th elides from my biopsy and

they told me Mayo Clinic was wrong. I do NOT have IPF but my fibrosis is

caused from the birds. they totally disagree with Mayo Clinic. Also Mayo

clinic said I was stable but NJ said it is of concern to them that I

still have fibrotic activity occuring after the birds have been removed.

Dr. Cosgrove said in rare cases that happens and it should abate in a

few months. Sometimes, he said, it still contnues to scar and they don't

understand why. He said he wants meto have a PFT in 3 monthts and send

him and my pulmonologist a copy and make an appointment at St. Jo's in

Phoenix to discuss the results. Meanwhile Dr.l Cosgrove would have

discussed the results with Dr. Hodges. If after 6 months the scarring

has not ceased it is worrysome and I may need another visit to NJ. He

said continuous scarring for enviromental fibrosis is very rare and he

doesn't expect it. He said he is cautiously optimistic. But, He assured

my I don' thave IPf.

>

> Good news. He explained why they have come to a different dicision

about the slides but it was all medical and I din't really understand it

other then diagnosing ILD is a subtle and difficult proceedure and

thought the pathologists at Mayo are world class they do not deal

exclusivly with reading the results of slides from lungs and they do

noth have all the information that NJ aquired while I was there.

>

> Anyway tha tis good news! Joyce Rudy AZ birds....

>

[Guest guest]

sounds encouraging, hope it's treatable and currable.

ken o.

To: Breathe-Support Sent: Tuesday, June 23, 2009 11:41:41 PMSubject: National Jewish called

Hi everyone, National Jewish finally got th elides from my biopsy and they told me Mayo Clinic was wrong. I do NOT have IPF but my fibrosis is caused from the birds. they totally disagree with Mayo Clinic. Also Mayo clinic said I was stable but NJ said it is of concern to them that I still have fibrotic activity occuring after the birds have been removed. Dr. Cosgrove said in rare cases that happens and it should abate in a few months. Sometimes, he said, it still contnues to scar and they don't understand why. He said he wants meto have a PFT in 3 monthts and send him and my pulmonologist a copy and make an appointment at St. Jo's in Phoenix to discuss the results. Meanwhile Dr.l Cosgrove would have discussed the results with Dr. Hodges. If after 6 months the scarring has not ceased it is worrysome and I may need another visit to NJ. He said continuous scarring for enviromental fibrosis is very rare and he doesn't expect it. He said he is cautiously

optimistic. But, He assured my I don' thave IPf. Good news. He explained why they have come to a different dicision about the slides but it was all medical and I din't really understand it other then diagnosing ILD is a subtle and difficult proceedure and thought the pathologists at Mayo are world class they do not deal exclusivly with reading the results of slides from lungs and they do noth have all the information that NJ aquired while I was there. Anyway tha tis good news! Joyce Rudy AZ birds....

[Guest guest]

Bruce- I will admit I am glad I had the Vats because it conclusively told me what was wrong and gave National Jewish a lot of information. I thank you for your compliments but I would never have heard of National Jewish if it weren't for you guys! Your insistence that I go to a center of excellence was very important in my calling National Jewish. I had never heard of the place and was ready to accept the fact that I was going to die. I would have died too because my pulmodude here in Prescott kept telling me that my parrots were fine and didn't cause my fibrosis.

I am pretty much back in the saddle 2 months after the Vats but I still don't have much stamina. It will come back though. I would not like to go thru that again! But, I started taking vitamins and that has helped a lot in increasing my energy. I still fatigue easily though.

I have to tell you it has been terribly stressful bouncing between diagnoses. First my pulmodude here in Prescott tells me I have PUlmonary Fibrosis and that is killer..then I go to National Jewish and find out I am going to live...then come home and have a biopsy and Mayo and St. Jo's tell me I have a life expectancy of less then three years.... and finally (Thank God) National Jewish reads the biopsy and says they are wrong it is the birds and I am going to live...boy that was horrid stress on my emotions! But it is over now. I cannot thank you and the group for pushing for me to go to National Jewish and I'll tell you I had the best treatment there! They were so friendly and caring and they never just "dropped" me because I left and went home. They have stuck with me and they are going to be working thru my new pulmodude at St. Jo's in Phoenix who was a doctor at National Jewish before he came to Phoenix. God, I am so happy! Joyce Rudy, AZ birds

Re: National Jewish called

JoyceThats great news to hear. I know its been a difficult path but I'm sogreatful that you went to National Jewish. Some more good lessons forothers too. The first is to definitely have your biopsy slides reviewedby more than one pathologist including one at an IPF center ofexcellence. I'm imaginging your first was at Mayo in sdale andwhile they are considered great pathologists, they aren't a Center ofExcellence (Rochester is).One of the things that happens at a center like National Jewish is thePathologist and the Pulmonologist actually are able to look together anddiscuss, including talking about your CT's and other information inconjunction with the slides. The pulmonologist and pathologist are ableto question each other face to face and challenge each other. My slideswere reviewed three times. I know when I went to Chicago, thepulmonologist had questions about the accuracy of the conclusions of theother two pathologists. However, she met with the pathologist there whoconvinced her that their conclusions were correct and showed her exactlywhat he based that on. In my case there were some things that wereatypical and that concerned her. The pathologist showed her that wasminimal and the overwhelming evidence was conclusive.The other great thing you have going now is you're being followed fromthis point forward. There are base lines to compare against. There areexpectations and if things vary from those experts will analyze it. Youknow you're being helped by the best.I laugh when you say below something about lots of medical things thatyou didn't really understand but then you explained very clearly. I readthis entire post and I see a woman who does understand and who is nowvery much in control of her medical situation. I compare it to you whenyou first joined here. Through no fault of your own, you were completelylost and confused and didn't know what was going on. You've come so farand you're a shining example to others to ask questions, to takecontrol, to learn. I remember the day you made the first call toNational Jewish and you came back on line amazed and feeling so muchbetter.How are you feeling now? Getting over the VATS a little week by week?Now comes the big question. I know right after the VATS you statedclearly you would never have done it had you known. I can assure youthat many of us have felt that way immediately after. Now that time haspassed and you've gotten results and heard from National Jewishconclusively, how do you feel about having had the VATS?>> Hi everyone, National Jewish finally got th elides from my biopsy andthey told me Mayo Clinic was wrong. I do NOT have IPF but my fibrosis iscaused from the birds. they totally disagree with Mayo Clinic. Also Mayoclinic said I was stable but NJ said it is of concern to them that Istill have fibrotic activity occuring after the birds have been removed.Dr. Cosgrove said in rare cases that happens and it should abate in afew months. Sometimes, he said, it still contnues to scar and they don'tunderstand why. He said he wants meto have a PFT in 3 monthts and sendhim and my pulmonologist a copy and make an appointment at St. Jo's inPhoenix to discuss the results. Meanwhile Dr.l Cosgrove would havediscussed the results with Dr. Hodges. If after 6 months the scarringhas not ceased it is worrysome and I may need another visit to NJ. Hesaid continuous scarring for enviromental fibrosis is very rare and hedoesn't expect it. He said he is cautiously optimistic. But, He assuredmy I don' thave IPf.>> Good news. He explained why they have come to a different dicisionabout the slides but it was all medical and I din't really understand itother then diagnosing ILD is a subtle and difficult proceedure andthought the pathologists at Mayo are world class they do not dealexclusivly with reading the results of slides from lungs and they donoth have all the information that NJ aquired while I was there.>> Anyway tha tis good news! Joyce Rudy AZ birds....>

[Guest guest]

Yes, Beth I use my oxygen regularly and in fact, my new pulmodude has writtien a prescription for me to see a respitory therapist to teach me how to breath during exercise et all and I meet with her for an evaluation on the second of July. I will also be joining in on medically attended exercise with a program. None of the docs here in Prescott ever did that for me. So, I will have good exercise under medical supervision.

I am feeling much better. It has taken so long for me to recover from the VATs but my spirits are high and though I fatigue easily I am getting better at that too. I have been driving all over in my new oil change car! Love it! Ahahahahahahah I take my dogs with me on small journeys and we stop in for an ice cream after our ride...it's lots of fun..and I have 5 dogs.

Yes, I think NJ 's conclusions are the best. They are very sure of their diagnoses and the only thing that concerns them is that I continue to scar even though I have rehomed my birds. I was wondering if I need to do anything special like get the house deep cleaned? Get an air filter? And if an air filter which actually work? Do I need to have my vents cleaned? I don't know how to proceed. National Jewish only told me to get rid of all my bird stuff and rehome the birds and clean where the birds were which I did. Any ideas? Joyce Rudy AZ birds

National Jewish called

Hi everyone, National Jewish finally got th elides from my biopsy and they told me Mayo Clinic was wrong. I do NOT have IPF but my fibrosis is caused from the birds. they totally disagree with Mayo Clinic. Also Mayo clinic said I was stable but NJ said it is of concern to them that I still have fibrotic activity occuring after the birds have been removed. Dr. Cosgrove said in rare cases that happens and it should abate in a few months. Sometimes, he said, it still contnues to scar and they don't understand why. He said he wants meto have a PFT in 3 monthts and send him and my pulmonologist a copy and make an appointment at St. Jo's in Phoenix to discuss the results. Meanwhile Dr.l Cosgrove would have discussed the results with Dr. Hodges. If after 6 months the scarring has not ceased it is worrysome and I may need another visit to NJ. He said continuous scarring for enviromental fibrosis is very rare and he doesn't expect it. He said he is cautiously optimistic. But, He assured my I don' thave IPf. Good news. He explained why they have come to a different dicision about the slides but it was all medical and I din't really understand it other then diagnosing ILD is a subtle and difficult proceedure and thought the pathologists at Mayo are world class they do not deal exclusivly with reading the results of slides from lungs and they do noth have all the information that NJ aquired while I was there. Anyway tha tis good news! Joyce Rudy AZ birds....

[Guest guest]

Joyce

Thanks for the kind words but it was easy for us to advise you. You're

the one who did the things. Even life expectancy isn't what is

important. What is important is making the most of our lives and doing

nothing that worsens our conditions or causes complications. It's

fortunate when we find doctors like you have who care and show

compassion toward their patients. It's such a contrast to the local

pulmonologist who even tried to discourage you from contacting National

Jewish. We all face many choices but how do we make them without good

information? We can't. The VATS is one of those choices and it's not

right for everyone, but your doctors at National Jewish knew what they

wanted to find out. Specifically they wanted to eliminate Scleroderma if

I recall. You'll be amazed at how helpful the respiratory rehab/exercise

program will be.

> >

> > Hi everyone, National Jewish finally got th elides from my biopsy

and

> they told me Mayo Clinic was wrong. I do NOT have IPF but my

fibrosis is

> caused from the birds. they totally disagree with Mayo Clinic. Also

Mayo

> clinic said I was stable but NJ said it is of concern to them that I

> still have fibrotic activity occuring after the birds have been

removed.

> Dr. Cosgrove said in rare cases that happens and it should abate in

a

> few months. Sometimes, he said, it still contnues to scar and they

don't

> understand why. He said he wants meto have a PFT in 3 monthts and

send

> him and my pulmonologist a copy and make an appointment at St. Jo's

in

> Phoenix to discuss the results. Meanwhile Dr.l Cosgrove would have

> discussed the results with Dr. Hodges. If after 6 months the

scarring

> has not ceased it is worrysome and I may need another visit to NJ.

He

> said continuous scarring for enviromental fibrosis is very rare and

he

> doesn't expect it. He said he is cautiously optimistic. But, He

assured

> my I don' thave IPf.

> >

> > Good news. He explained why they have come to a different dicision

> about the slides but it was all medical and I din't really

understand it

> other then diagnosing ILD is a subtle and difficult proceedure and

> thought the pathologists at Mayo are world class they do not deal

> exclusivly with reading the results of slides from lungs and they do

> noth have all the information that NJ aquired while I was there.

> >

> > Anyway tha tis good news! Joyce Rudy AZ birds....

> >

>

[Guest guest]

Any time you are my way...drop in! I would love to see you and your dog would be very welcome! Have you seen the grand canyon? It is magnificent you would be most welcome here...and if I had time I would move stuff around in the craft room and bring out my bed that hides and you and your dog could stay here. LOL Where are you?

I look forward to my visit with the repertory therapist and hope I can afford the medically supervised exercise. The therapist seemed so helpful when I talked to her on the phone. I didn't know there was a special way to breathe when you exercise! think about visiting AZ! And, all prayers are welcome. The scarring has to stop and prayers work. Joyce AZ birds

National Jewish called

Hi everyone, National Jewish finally got th elides from my biopsy and they told me Mayo Clinic was wrong. I do NOT have IPF but my fibrosis is caused from the birds. they totally disagree with Mayo Clinic. Also Mayo clinic said I was stable but NJ said it is of concern to them that I still have fibrotic activity occuring after the birds have been removed. Dr. Cosgrove said in rare cases that happens and it should abate in a few months. Sometimes, he said, it still contnues to scar and they don't understand why. He said he wants meto have a PFT in 3 monthts and send him and my pulmonologist a copy and make an appointment at St. Jo's in Phoenix to discuss the results. Meanwhile Dr.l Cosgrove would have discussed the results with Dr. Hodges. If after 6 months the scarring has not ceased it is worrysome and I may need another visit to NJ. He said continuous scarring for enviromental fibrosis is very rare and he doesn't expect it. He said he is cautiously optimistic. But, He assured my I don' thave IPf. Good news. He explained why they have come to a different dicision about the slides but it was all medical and I din't really understand it other then diagnosing ILD is a subtle and difficult proceedure and thought the pathologists at Mayo are world class they do not deal exclusivly with reading the results of slides from lungs and they do noth have all the information that NJ aquired while I was there. Anyway tha tis good news! Joyce Rudy AZ birds....

[Guest guest]

I am probably not answering to the right person. I think you have fantastic news. My parents had this same disease (I think as too little was know at the time). They lived for over fifteen years each with this disease. It was not easy; however, they enjoyed very much too.

My brother died of IPF 22 months after he learned he had IPF. I now have had IPF for nine months. I am still dreaming I will get some news similar to yours. Denial is great stuff. Burns.To: Breathe-Support Sent: Wednesday, June 24, 2009 12:20:40 PMSubject: Re: National Jewish called

JoyceR... I'm sorry the docs can't also tell you that your lungs will clear up since it is NOT IPF...

It's a mixed blessing isn't it.

I hope the very best for you!

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

National Jewish called

Hi everyone, National Jewish finally got th elides from my biopsy and they told me Mayo Clinic was wrong. I do NOT have IPF but my fibrosis is caused from the birds. they totally disagree with Mayo Clinic. Also Mayo clinic said I was stable but NJ said it is of concern to them that I still have fibrotic activity occuring after the birds have been removed. Dr. Cosgrove said in rare cases that happens and it should abate in a few months. Sometimes, he said, it still contnues to scar and they don't understand why. He said he wants meto have a PFT in 3 monthts and send him and my pulmonologist a copy and make an appointment at St. Jo's in Phoenix to discuss the results. Meanwhile Dr.l Cosgrove would have discussed the results with Dr. Hodges. If after 6 months the scarring has not ceased it is worrysome and I may need another visit to NJ. He said continuous scarring for enviromental fibrosis is very rare and he doesn't expect it. He said he is cautiously

optimistic. But, He assured my I don' thave IPf. Good news. He explained why they have come to a different dicision about the slides but it was all medical and I din't really understand it other then diagnosing ILD is a subtle and difficult proceedure and thought the pathologists at Mayo are world class they do not deal exclusivly with reading the results of slides from lungs and they do noth have all the information that NJ aquired while I was there. Anyway tha tis good news! Joyce Rudy AZ birds....

[Guest guest]

.... perhaps you meant your post for Joyce...

However, I'm sorry this disease claimed your brother. Very sad. We seem to hear more about familial PF as more members come to the board.

Do you mean your parents both had lung problems due to birds? If so, it's encouraging to Joyce I'm sure, that they lived 15 years beyond dx.

Do you have other siblings?

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

National Jewish called

Hi everyone, National Jewish finally got th elides from my biopsy and they told me Mayo Clinic was wrong. I do NOT have IPF but my fibrosis is caused from the birds. they totally disagree with Mayo Clinic. Also Mayo clinic said I was stable but NJ said it is of concern to them that I still have fibrotic activity occuring after the birds have been removed. Dr. Cosgrove said in rare cases that happens and it should abate in a few months. Sometimes, he said, it still contnues to scar and they don't understand why. He said he wants meto have a PFT in 3 monthts and send him and my pulmonologist a copy and make an appointment at St. Jo's in Phoenix to discuss the results. Meanwhile Dr.l Cosgrove would have discussed the results with Dr. Hodges. If after 6 months the scarring has not ceased it is worrysome and I may need another visit to NJ. He said continuous scarring for enviromental fibrosis is very rare and he doesn't expect it. He said he is cautiously optimistic. But, He assured my I don' thave IPf. Good news. He explained why they have come to a different dicision about the slides but it was all medical and I din't really understand it other then diagnosing ILD is a subtle and difficult proceedure and thought the pathologists at Mayo are world class they do not deal exclusivly with reading the results of slides from lungs and they do noth have all the information that NJ aquired while I was there. Anyway tha tis good news! Joyce Rudy AZ birds....

[Guest guest]

Hi Greycharlie,I too went to National Jewish (lived in Denver before moving to Bellevue WA). Have you had your house thoroughly cleaned of all the bird dander? I mean drapes dry cleaned, carpets removed, walls all wiped down, all linens and fabrics washed, anything in the closet etc.? If that was the cause you want to make sure you get rid of all the remnants. Good luck. I hope your scarring STOPS right now!Peggy Ellis (53 y.o. ILD 2008, GERD 2009) hopefully ILD arrested :)Subject: National Jewish calledTo:

Breathe-Support Date: Tuesday, June 23, 2009, 11:41 PM

Hi everyone, National Jewish finally got th elides from my biopsy and they told me Mayo Clinic was wrong. I do NOT have IPF but my fibrosis is caused from the birds. they totally disagree with Mayo Clinic. Also Mayo clinic said I was stable but NJ said it is of concern to them that I still have fibrotic activity occuring after the birds have been removed. Dr. Cosgrove said in rare cases that happens and it should abate in a few months. Sometimes, he said, it still contnues to scar and they don't understand why. He said he wants meto have a PFT in 3 monthts and send him and my pulmonologist a copy and make an appointment at St. Jo's in Phoenix to discuss the results. Meanwhile Dr.l Cosgrove would have discussed the results with Dr. Hodges. If after 6 months the scarring has not ceased it is worrysome and I may need another visit to NJ. He said continuous scarring for enviromental fibrosis is very rare and he doesn't expect it. He said he is

cautiously optimistic. But, He assured my I don' thave IPf.

Good news. He explained why they have come to a different dicision about the slides but it was all medical and I din't really understand it other then diagnosing ILD is a subtle and difficult proceedure and thought the pathologists at Mayo are world class they do not deal exclusivly with reading the results of slides from lungs and they do noth have all the information that NJ aquired while I was there.

Anyway tha tis good news! Joyce Rudy AZ birds....