Re: National Jewish called

[Guest guest]

Peggy

Have a great great great trip. Kentucky? What's in Kentucky? Boy, thats

a long way but you're in excellent hands. I'm so happy for you.

>

>

>

>

> 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

>

>

>

> From: greycharlie greycharlie@...

> To: Breathe-Support

> Sent: Wednesday, June 24, 2009 2:41:41 AM

> Subject: 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]

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]



God be with you Peggy....

Later...

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]

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: National Jewish calledTo: Breathe-Support Date: Wednesday, June 24, 2009, 2:41 AM

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,

I can't tell you how impressed I am with all that you've accomplished on your own. You are so determined to get the right information and look after yourself properly. I'm happy things are working out well and I will continue to pray that the fibrosis stops and you stablize completely

It's great that they are having you work with a repsiratory therapist and it sounds like you will be doing some type of pulmonary rehab. I think you will find it incredibly helpful. I did rehab the first time three years ago and I loved it. Just this week I requested and received a prescription for another round of pulmonary rehab. I can't wait to get started again. I know it will be a benefit for both of us.

Enjoy the new car and those wonderful dogs!! If we lived closer I'd bring my dog and come for a visit!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Wednesday, June 24, 2009 6:52:12 PMSubject: Re: National Jewish called

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....