Hey Terre - Update on my status

[Guest guest]

Hey Guy,

Hope all is as well as can be. Yea, I wanted to listen to the XM show but I was

not going to go out in the rain and sit in my car. Maybe someone recorded it

and can post it on youtube or something. I went to see doctor Glassberg today.

As it turned out, I did not have a nodule. The radiologist who reviewed my

X-ray I got the day my VATS stiches were removed said the spot of my biopsy was

a nodule, (I guess he did not know I had a biopsy). So Dr. Glassberg showed me

the biopsy spot today on a new cat scan I had Monday, and that is what the

radiologist thought was a nodule, (Idiot - he should have checked my records

before reading the E-Ray). I also had a Echo at my cardiologist Monday and that

came back good, with a RVSP of 22, which is way within normal, - so no cardiac

cath. for me. Dr. Glassberg also said that she though my new cat scan showed

less inflamation and less ground glass opacities.

So not a bad day, can enjoy thanksgiving tomorrow and have a few cocktails.

Doc. wants me to think about going on one of her trials, she is sending me the

information. I told her today, I wont do anything with Steroids, (everything I

read shows bad side effects and and no long term benifit). Someone posted

something the other day about the trial that you are considering, that it got

him sick after the first treatment. I dont know, its all a little scary trying

drugs that have no history. I will have to think about it, I know somebody has

to step up.

Sorry to hear about you capacity, hopefully it will return back to previous

reading after you fully heal. Dr. Nygeun seemed like he was a good surgeon, but

he had horrible people skills.

I kind of feel that the VATS biopsy was a waste of time and pain. I would tell

others to really consider no doing it. All it did was prove what they already

knew. We were somewhat lucky as we went through it okay, but there are alot of

horror stories out there.

I am also going to go on permanent disability while I still have a job with good

benefits. I am not going to spend the last few years of my life doing something

I hate, plus rumors are that the are going to have more layoffs in my dept. and

I would fall into that next group of people. I discussed with Doctor Glassberg

and she will give my private Disability Insurance Company my diagnosis (UIP) and

prognosis (2-4 years - mean survival, she thinks I have alot more time though

due to my age, other test results, and overall appearance) and I will probably

have to work with my primary doctor to provide symptom information, which are

alot - even if my PFT and 6 minute walk scores are good.

I was going to check with the hospital to see if maybe I can volunteer a couple

of days a week. I am really rambling on now.

So, Have a good thanksgiving and keep me posted.

Dave, Miami, 43, UIP 11/09

> > >

> > >

> > > Hello all

> > >  

> > > Just wanted to let you know that tomorrow morning Dr. Dan Rose, President

of the Pulmonary Fibrosis Foundation and Krysten Knievel will be on the Doctor

Radio Show being interviewed by Dr. Fred Feit on Sirius and XM Satellite Radio -

> > >  

> > > Wednesday November 25 6AM EST - 7AM EST

> > > The show will air live on Sirius channel 114 and XM channel 119. The show

will repeat at 4PM EST that same day

> > >  

> > > Please call in with questions:

> > > 877-NYU-DOCS ()

> > >  

> > > You can sign up for a free 7-day trial if you are interested in hearing

the interview:

> > > http://www.sirius.com/freetrial/register

> > >  

> > > We hope you will be able to tune into the Doctor Radio show....

> > >  

> > >

> > >

> > >  

> > > Leanne Storch

> > > Executive Director

> > > Pulmonary Fibrosis Foundation

> > > 1332 N. Halsted, Suite 201

> > > Chicago, IL 60642-2642

> > > www.pulmonaryfibrosis.org

> > > Join our Facebook Community

> > > http://www.facebook.com/PulmonaryFibrosisFoundation

> > > P

> > > F

> > >  

> > >  A cure is just a breath away

> > >   

> > >

> > >  

[Guest guest]

Hi Dave,

I too had a VATS and I am still recovering from it. How are you feeling? Are you looking into transplant? I have been told that I should. What else has you dr. told you to do it if you don't go on meds.

UIP/11/-09

To: Breathe-Support Sent: Wed, November 25, 2009 8:42:39 PMSubject: Hey Terre - Update on my status

Hey Guy,Hope all is as well as can be. Yea, I wanted to listen to the XM show but I was not going to go out in the rain and sit in my car. Maybe someone recorded it and can post it on youtube or something. I went to see doctor Glassberg today. As it turned out, I did not have a nodule. The radiologist who reviewed my X-ray I got the day my VATS stiches were removed said the spot of my biopsy was a nodule, (I guess he did not know I had a biopsy). So Dr. Glassberg showed me the biopsy spot today on a new cat scan I had Monday, and that is what the radiologist thought was a nodule, (Idiot - he should have checked my records before reading the E-Ray). I also had a Echo at my cardiologist Monday and that came back good, with a RVSP of 22, which is way within normal, - so no cardiac cath. for me. Dr. Glassberg also said that she though my new cat scan showed less inflamation and less ground glass opacities. So not a bad day, can enjoy thanksgiving

tomorrow and have a few cocktails. Doc. wants me to think about going on one of her trials, she is sending me the information. I told her today, I wont do anything with Steroids, (everything I read shows bad side effects and and no long term benifit). Someone posted something the other day about the trial that you are considering, that it got him sick after the first treatment. I dont know, its all a little scary trying drugs that have no history. I will have to think about it, I know somebody has to step up.Sorry to hear about you capacity, hopefully it will return back to previous reading after you fully heal. Dr. Nygeun seemed like he was a good surgeon, but he had horrible people skills.I kind of feel that the VATS biopsy was a waste of time and pain. I would tell others to really consider no doing it. All it did was prove what they already knew. We were somewhat lucky as we went through it okay, but there are alot of horror stories out

there.I am also going to go on permanent disability while I still have a job with good benefits. I am not going to spend the last few years of my life doing something I hate, plus rumors are that the are going to have more layoffs in my dept. and I would fall into that next group of people. I discussed with Doctor Glassberg and she will give my private Disability Insurance Company my diagnosis (UIP) and prognosis (2-4 years - mean survival, she thinks I have alot more time though due to my age, other test results, and overall appearance) and I will probably have to work with my primary doctor to provide symptom information, which are alot - even if my PFT and 6 minute walk scores are good. I was going to check with the hospital to see if maybe I can volunteer a couple of days a week. I am really rambling on now.So, Have a good thanksgiving and keep me posted.Dave, Miami, 43, UIP 11/09> > >> > > > > > Hello all> > > > > > Just wanted to let you know that tomorrow morning Dr. Dan Rose, President of the Pulmonary Fibrosis Foundation and Krysten Knievel will be on the Doctor Radio Show being interviewed by Dr. Fred Feit on Sirius and XM Satellite Radio - > > > > > > Wednesday November 25 6AM

EST - 7AM EST> > > The show will air live on Sirius channel 114 and XM channel 119. The show will repeat at 4PM EST that same day> > > > > > Please call in with questions:> > > 877-NYU-DOCS ()> > > > > > You can sign up for a free 7-day trial if you are interested in hearing the interview:> > > http://www.sirius. com/freetrial/ register> > > > > > We hope you will be able to tune into the Doctor Radio show....> > > > > > > > > > > > > > > Leanne Storch> > > Executive Director> > > Pulmonary Fibrosis Foundation> > > 1332 N. Halsted, Suite 201> > > Chicago, IL 60642-2642> > >

www.pulmonaryfibros is.org> > > Join our Facebook Community> > > http://www.facebook.com/PulmonaryFibrosisFoundation> > > P> > > F> > > > > > A cure is just a breath away > > > > > > > > >

[Guest guest]

Hey ,

Since I am not on O2 yet and my PFT scores are somewhat good I am not even

thinking about a transplant yet. My Dr, said I will live longer the way I am

right now then if I got a transplant next week where it median life expectancy

is 5 years. And my Dr. is great, she is the head of the ILD department at

University of Miami and is 1 one the top 10 experts in the country. She wants

me think about going on one of her trials, and I am considering it. But, I do

not want to do anything that involves steroids, all the research I did shows

that it is not very helpful in the end and comes with alot of side effects.

I am on no Meds right now, but will start pulmonary rehab soon. I plan on

getting my body in the best shape possible for when the time does come that I

need a transplant.

Why are they telling you to look into a transplant so soon? What are your PFT

scores? Are you on 02 yet? Last night was actually the first night I was able to

sleep on my right side (VATS SIDE) like I usually do and had a good nights

sleep. Don't jump the gun if you dont have too and make sure you see one of the

specialist from the major list of hospitals on the pulmonaryfibrosis.org web

site.

My Dr. is good friends and is in constant contact with Dr. Ragu in Seattle, Dr.

Brown in Denver, and all the other specialists from the Centers of Excellence

Hospitals. She said they talk constantly and have tele-conferences and are all

on the same page.

Good luck, Dave

> > > >

> > > >

> > > > Hello all

> > > >  

> > > > Just wanted to let you know that tomorrow morning Dr. Dan Rose,

President of the Pulmonary Fibrosis Foundation and Krysten Knievel will be on

the Doctor Radio Show being interviewed by Dr. Fred Feit on Sirius and XM

Satellite Radio -

> > > >  

> > > > Wednesday November 25 6AM EST - 7AM EST

> > > > The show will air live on Sirius channel 114 and XM channel 119. The

show will repeat at 4PM EST that same day

> > > >  

> > > > Please call in with questions:

> > > > 877-NYU-DOCS ()

> > > >  

> > > > You can sign up for a free 7-day trial if you are interested in hearing

the interview:

> > > > http://www.sirius. com/freetrial/ register

> > > >  

> > > > We hope you will be able to tune into the Doctor Radio show....

> > > >  

> > > >

> > > >

> > > >  

> > > > Leanne Storch

> > > > Executive Director

> > > > Pulmonary Fibrosis Foundation

> > > > 1332 N.. Halsted, Suite 201

> > > > Chicago, IL 60642-2642

> > > > www.pulmonaryfibros is.org

> > > > Join our Facebook Community

> > > > http://www.facebook..com/PulmonaryFibrosisFoundation

> > > > P

> > > > F

> > > >  

> > > >  A cure is just a breath away

> > > >   

> > > >

> > > >  

[Guest guest]

Dave,

I feel I am in the blind. I don't know what my PFT's score is. I just know that my oxygen level wasn't good. I was told that my lungs are in bad shape. I don't know how long I have had it and either does the dr.

I have to find a center of excellance as I live in New York and don't know if there is one. I have seen one in Rochester, New York but not sure that is what I am suppose to be looking for.

To: Breathe-Support Sent: Thu, November 26, 2009 9:10:06 AMSubject: Re: Hey Terre - Update on my status

Hey ,Since I am not on O2 yet and my PFT scores are somewhat good I am not even thinking about a transplant yet. My Dr, said I will live longer the way I am right now then if I got a transplant next week where it median life expectancy is 5 years. And my Dr. is great, she is the head of the ILD department at University of Miami and is 1 one the top 10 experts in the country. She wants me think about going on one of her trials, and I am considering it. But, I do not want to do anything that involves steroids, all the research I did shows that it is not very helpful in the end and comes with alot of side effects.I am on no Meds right now, but will start pulmonary rehab soon. I plan on getting my body in the best shape possible for when the time does come that I need a transplant.Why are they telling you to look into a transplant so soon? What are your PFT scores? Are you on 02 yet? Last night was actually the first night I

was able to sleep on my right side (VATS SIDE) like I usually do and had a good nights sleep. Don't jump the gun if you dont have too and make sure you see one of the specialist from the major list of hospitals on the pulmonaryfibrosis. org web site. My Dr. is good friends and is in constant contact with Dr. Ragu in Seattle, Dr. Brown in Denver, and all the other specialists from the Centers of Excellence Hospitals. She said they talk constantly and have tele-conferences and are all on the same page.Good luck, Dave> > > >> > > > > > > > Hello all> > > > Â > > > > Just

wanted to let you know that tomorrow morning Dr. Dan Rose, President of the Pulmonary Fibrosis Foundation and Krysten Knievel will be on the Doctor Radio Show being interviewed by Dr. Fred Feit on Sirius and XM Satellite Radio - > > > > Â > > > > Wednesday November 25 6AM EST - 7AM EST> > > > The show will air live on Sirius channel 114 and XM channel 119. The show will repeat at 4PM EST that same day> > > > Â > > > > Please call in with questions:> > > > 877-NYU-DOCS ()> > > > Â > > > > You can sign up for a free 7-day trial if you are interested in hearing the interview:> > > > http://www.sirius. com/freetrial/ register> > > > Â > > > > We hope you will be able to tune into the Doctor Radio show....> > > > Â > >

> > > > > > > > > > Â > > > > Leanne Storch> > > > Executive Director> > > > Pulmonary Fibrosis Foundation> > > > 1332 N.. Halsted, Suite 201> > > > Chicago, IL 60642-2642> > > > www.pulmonaryfibros is.org> > > > Join our Facebook Community> > > > http://www.facebook..com/PulmonaryFibrosisFoundation> > > > P> > > > F> > > > Â > > > > Â A cure is just a breath away > > > > Â Â > > > > > > > > Â

[Guest guest]

Dave

The term thinking of a transplant can mean a lot of things. To someone

early I think it can mean that one would consider it down the road, is

going to start learning what they can about it, will check out possible

transplant centers, and while still healthy may even visit one to find

out if they have any issues that need addressing before that time comes.

While one won't go for listing early, that doesn't mean thinking can't

be helpful. Just being aware of the logistics one would involve is

important. For one who is outside the weight limits they would want, the

sooner one can start losing the better for many reasons. For one with

other conditions that may impact or at least need treatment and

addressing, they can work on that. I am personally not a transplant

candidate but I did and have thought about it and visited the nearest

transplant center and saw the doctors there a year and half ago.

> > > > >

> > > > >

> > > > > Hello all

> > > > > Â

> > > > > Just wanted to let you know that tomorrow morning Dr. Dan

Rose, President of the Pulmonary Fibrosis Foundation and Krysten Knievel

will be on the Doctor Radio Show being interviewed by Dr. Fred Feit on

Sirius and XM Satellite Radio -

> > > > > Â

> > > > > Wednesday November 25 6AM EST - 7AM EST

> > > > > The show will air live on Sirius channel 114 and XM channel

119. The show will repeat at 4PM EST that same day

> > > > > Â

> > > > > Please call in with questions:

> > > > > 877-NYU-DOCS ()

> > > > > Â

> > > > > You can sign up for a free 7-day trial if you are interested

in hearing the interview:

> > > > > http://www.sirius. com/freetrial/ register

> > > > > Â

> > > > > We hope you will be able to tune into the Doctor Radio

show....

> > > > > Â

> > > > >

> > > > >

> > > > > Â

> > > > > Leanne Storch

> > > > > Executive Director

> > > > > Pulmonary Fibrosis Foundation

> > > > > 1332 N.. Halsted, Suite 201

> > > > > Chicago, IL 60642-2642

> > > > > www.pulmonaryfibros is.org

> > > > > Join our Facebook Community

> > > > > http://www.facebook..com/PulmonaryFibrosisFoundation

> > > > > P

> > > > > F

> > > > > Â

> > > > > Â A cure is just a breath away

> > > > > Â Â

> > > > >

> > > > > Â

[Guest guest]

Hi Dave,

Happy Thanksgiving to you and all of the Air Family. It's great to hear about

the " no nodule " news. Also the better CT scan news is terrific.

Dr. Glassberg asked if I wanted to try the CNTO 888 trial. I signed up and

started the process. But, have run into a snag with the PFT's. I'm hoping that

it was the tech's fault that he didn't get the results to them correctly and not

my lower capacity. He seemed to download the results to them without a chip in

place in the machine. The office supervisor wasn't sure that was correct. If not

I may not be approved.

This trial is already being used to check for effects against lung cancer. It is

an antibody that binds to another one and inhibits tumors; they hope. It would

also inhibit the fibrosis; they hope.

They did say that your body may produce antibodies against the drug. That may be

what experienced.

I agree with you about the VATS biopsy. It would be good if you really didn't

know but in my case they were 95% sure and it was done so I could get into the

Artemus trial. And now I'm not even doing that one.

Have one for me today. Happy Thanksgiving.

Terre, IPF, 6-08, FL

> > > >

> > > >

> > > > Hello all

> > > >  

> > > > Just wanted to let you know that tomorrow morning Dr. Dan Rose,

President of the Pulmonary Fibrosis Foundation and Krysten Knievel will be on

the Doctor Radio Show being interviewed by Dr. Fred Feit on Sirius and XM

Satellite Radio -

> > > >  

> > > > Wednesday November 25 6AM EST - 7AM EST

> > > > The show will air live on Sirius channel 114 and XM channel 119. The

show will repeat at 4PM EST that same day

> > > >  

> > > > Please call in with questions:

> > > > 877-NYU-DOCS ()

> > > >  

> > > > You can sign up for a free 7-day trial if you are interested in hearing

the interview:

> > > > http://www.sirius.com/freetrial/register

> > > >  

> > > > We hope you will be able to tune into the Doctor Radio show....

> > > >  

> > > >

> > > >

> > > >  

> > > > Leanne Storch

> > > > Executive Director

> > > > Pulmonary Fibrosis Foundation

> > > > 1332 N. Halsted, Suite 201

> > > > Chicago, IL 60642-2642

> > > > www.pulmonaryfibrosis.org

> > > > Join our Facebook Community

> > > > http://www.facebook.com/PulmonaryFibrosisFoundation

> > > > P

> > > > F

> > > >  

> > > >  A cure is just a breath away

> > > >   

> > > >

> > > >  

[Guest guest]

Hi,

You have 3 places in your area, University of Rochester (Rochester, NY) ,

Cornell University (Manhattan), University of Penn. (Philadelphia) - they all

have special departments for ILD.

You should know your scores, ect. You need to take control of your care, because

as soon as you leave the Dr.'s office they are already onto the next patient.

Your need to keep records of every Dr. visit and what was said, keep copies of

all your test results and know how to read them, ask questions about anything

and everything, explore the internet, and use this group as a resource.

You have to get past the intial shock and fight this. It sucks for all of us,

and I am still upset, but I have no other choice. Dave

> > > > >

> > > > >

> > > > > Hello all

> > > > >  

> > > > > Just wanted to let you know that tomorrow morning Dr. Dan Rose,

President of the Pulmonary Fibrosis Foundation and Krysten Knievel will be on

the Doctor Radio Show being interviewed by Dr. Fred Feit on Sirius and XM

Satellite Radio -

> > > > >  

> > > > > Wednesday November 25 6AM EST - 7AM EST

> > > > > The show will air live on Sirius channel 114 and XM channel 119. The

show will repeat at 4PM EST that same day

> > > > >  

> > > > > Please call in with questions:

> > > > > 877-NYU-DOCS ()

> > > > >  

> > > > > You can sign up for a free 7-day trial if you are interested in

hearing the interview:

> > > > > http://www.sirius. com/freetrial/ register

> > > > >  

> > > > > We hope you will be able to tune into the Doctor Radio show....

> > > > >  

> > > > >

> > > > >

> > > > >  

> > > > > Leanne Storch

> > > > > Executive Director

> > > > > Pulmonary Fibrosis Foundation

> > > > > 1332 N.. Halsted, Suite 201

> > > > > Chicago, IL 60642-2642

> > > > > www.pulmonaryfibros is.org

> > > > > Join our Facebook Community

> > > > > http://www.facebook..com/PulmonaryFibrosisFoundation

> > > > > P

> > > > > F

> > > > >  

> > > > >  A cure is just a breath away

> > > > >   

> > > > >

> > > > >  

[Guest guest]

thanks dave. Will be looking into it.To: Breathe-Support Sent: Thu, November 26, 2009 10:54:28 AMSubject: Re: Hey Terre - Update on my status

Hi,

You have 3 places in your area, University of Rochester (Rochester, NY) , Cornell University (Manhattan), University of Penn. (Philadelphia) - they all have special departments for ILD.

You should know your scores, ect. You need to take control of your care, because as soon as you leave the Dr.'s office they are already onto the next patient. Your need to keep records of every Dr. visit and what was said, keep copies of all your test results and know how to read them, ask questions about anything and everything, explore the internet, and use this group as a resource.

You have to get past the intial shock and fight this. It sucks for all of us, and I am still upset, but I have no other choice. Dave

> > > > >

> > > > >

> > > > > Hello all

> > > > > ÂÂ

> > > > > Just wanted to let you know that tomorrow morning Dr. Dan Rose, President of the Pulmonary Fibrosis Foundation and Krysten Knievel will be on the Doctor Radio Show being interviewed by Dr. Fred Feit on Sirius and XM Satellite Radio -

> > > > > ÂÂ

> > > > > Wednesday November 25 6AM EST - 7AM EST

> > > > > The show will air live on Sirius channel 114 and XM channel 119. The show will repeat at 4PM EST that same day

> > > > > ÂÂ

> > > > > Please call in with questions:

> > > > > 877-NYU-DOCS ()

> > > > > ÂÂ

> > > > > You can sign up for a free 7-day trial if you are interested in hearing the interview:

> > > > > http://www.sirius. com/freetrial/ register

> > > > > ÂÂ

> > > > > We hope you will be able to tune into the Doctor Radio show....

> > > > > ÂÂ

> > > > >

> > > > >

> > > > > ÂÂ

> > > > > Leanne Storch

> > > > > Executive Director

> > > > > Pulmonary Fibrosis Foundation

> > > > > 1332 N.. Halsted, Suite 201

> > > > > Chicago, IL 60642-2642

> > > > > www.pulmonaryfibros is.org

> > > > > Join our Facebook Community

> > > > > http://www.facebook..com/PulmonaryFibrosisFoundation

> > > > > P

> > > > > F

> > > > > ÂÂ

> > > > >  A cure is just a breath away

> > > > >  ÂÂ

> > > > >

> > > > > ÂÂ

[Guest guest]

Sorry Bruce,

But I am not going down that road yet. And my Dr. told me to not even think

about a transplant yet. I know I have to get in the best shape possible, as I

stated below, for when that time does come. I need to lose about 40 pounds and

will work on that and nutrition, ect. But I am not going to all the hospitals

now and tour their transplant units. When the time comes and my Doctor tells me

I will then start the process. of course I have done some research on

transplants and what they look for and how it works.

And god forbid, if I went out now while I am still somewhat healthy and found

out that I an not a canidate for transplant. I dont want to know that now and

have to suffer even more for what ever time I have left knowing that that is not

an option down the road.

This is the way I am doing it. Other people can choose any path they prefer.

But when they ask my opinion, I will give it to them.

Dave

> > > > > >

> > > > > >

> > > > > > Hello all

> > > > > > Â

> > > > > > Just wanted to let you know that tomorrow morning Dr. Dan

> Rose, President of the Pulmonary Fibrosis Foundation and Krysten Knievel

> will be on the Doctor Radio Show being interviewed by Dr. Fred Feit on

> Sirius and XM Satellite Radio -

> > > > > > Â

> > > > > > Wednesday November 25 6AM EST - 7AM EST

> > > > > > The show will air live on Sirius channel 114 and XM channel

> 119. The show will repeat at 4PM EST that same day

> > > > > > Â

> > > > > > Please call in with questions:

> > > > > > 877-NYU-DOCS ()

> > > > > > Â

> > > > > > You can sign up for a free 7-day trial if you are interested

> in hearing the interview:

> > > > > > http://www.sirius. com/freetrial/ register

> > > > > > Â

> > > > > > We hope you will be able to tune into the Doctor Radio

> show....

> > > > > > Â

> > > > > >

> > > > > >

> > > > > > Â

> > > > > > Leanne Storch

> > > > > > Executive Director

> > > > > > Pulmonary Fibrosis Foundation

> > > > > > 1332 N.. Halsted, Suite 201

> > > > > > Chicago, IL 60642-2642

> > > > > > www.pulmonaryfibros is.org

> > > > > > Join our Facebook Community

> > > > > > http://www.facebook..com/PulmonaryFibrosisFoundation

> > > > > > P

> > > > > > F

> > > > > > Â

> > > > > > Â A cure is just a breath away

> > > > > > Â Â

> > > > > >

> > > > > > Â

[Guest guest]

thanks to everyone who is enrolled in clinical trials

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Hey Terre - Update on my statusTo: Breathe-Support Date: Thursday, November 26, 2009, 10:41 AM

Hi Dave,Happy Thanksgiving to you and all of the Air Family. It's great to hear about the "no nodule" news. Also the better CT scan news is terrific.Dr. Glassberg asked if I wanted to try the CNTO 888 trial. I signed up and started the process. But, have run into a snag with the PFT's. I'm hoping that it was the tech's fault that he didn't get the results to them correctly and not my lower capacity. He seemed to download the results to them without a chip in place in the machine. The office supervisor wasn't sure that was correct. If not I may not be approved.This trial is already being used to check for effects against lung cancer. It is an antibody that binds to another one and inhibits tumors; they hope. It would also inhibit the fibrosis; they hope.They did say that your body may produce antibodies against the drug. That may be what experienced.I agree with you about the VATS biopsy. It would be good if you really

didn't know but in my case they were 95% sure and it was done so I could get into the Artemus trial. And now I'm not even doing that one.Have one for me today. Happy Thanksgiving.Terre, IPF, 6-08, FL> > > >> > > > > > > > Hello all> > > > > > > > Just wanted to let you know that tomorrow morning Dr. Dan Rose, President of the Pulmonary Fibrosis Foundation and Krysten Knievel will be on the Doctor Radio Show being interviewed by Dr. Fred Feit on Sirius and XM Satellite Radio - > > > > > > > > Wednesday November 25 6AM EST - 7AM EST> > > > The show will air live on Sirius channel 114 and XM channel 119. The show will repeat at 4PM EST that same day> > > > > > > > Please call

in with questions:> > > > 877-NYU-DOCS ()> > > > > > > > You can sign up for a free 7-day trial if you are interested in hearing the interview:> > > > http://www.sirius. com/freetrial/ register> > > > > > > > We hope you will be able to tune into the Doctor Radio show....> > > > > > > > > > > > > > > > > > > > Leanne Storch> > > > Executive Director> > > > Pulmonary Fibrosis Foundation> > > > 1332 N. Halsted, Suite 201> > > > Chicago, IL 60642-2642> > > > www.pulmonaryfibros is.org> > > > Join our Facebook Community> > > > http://www.facebook .com/PulmonaryFi brosisFoundation> > > > P> > > > F> > > > > > > > A cure is just a breath away > > > > > > > > > > > >

[Guest guest]

Temple University in Philadelphia is another excellent center for ILD's and lung transplants

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Hey Terre - Update on my statusTo: Breathe-Support Date: Thursday, November 26, 2009, 10:54 AM

Hi,You have 3 places in your area, University of Rochester (Rochester, NY) , Cornell University (Manhattan), University of Penn. (Philadelphia) - they all have special departments for ILD.You should know your scores, ect. You need to take control of your care, because as soon as you leave the Dr.'s office they are already onto the next patient. Your need to keep records of every Dr. visit and what was said, keep copies of all your test results and know how to read them, ask questions about anything and everything, explore the internet, and use this group as a resource.You have to get past the intial shock and fight this. It sucks for all of us, and I am still upset, but I have no other choice. Dave>

> > > >> > > > > > > > > > Hello all> > > > >  > > > > > Just wanted to let you know that tomorrow morning Dr. Dan Rose, President of the Pulmonary Fibrosis Foundation and Krysten Knievel will be on the Doctor Radio Show being interviewed by Dr. Fred Feit on Sirius and XM Satellite Radio - > > > > >  > > > > > Wednesday November 25 6AM EST - 7AM EST> > > > > The show will air live on Sirius channel 114 and XM channel 119. The show will repeat at 4PM EST that same day> > > > >  > > > > > Please call in with questions:> > > > > 877-NYU-DOCS ()> > > > >  > > > > > You can sign up for a free 7-day trial if you are interested in hearing the interview:> >

> > > http://www.sirius. com/freetrial/ register> > > > >  > > > > > We hope you will be able to tune into the Doctor Radio show....> > > > >  > > > > > > > > > > > > > > >  > > > > > Leanne Storch> > > > > Executive Director> > > > > Pulmonary Fibrosis Foundation> > > > > 1332 N.. Halsted, Suite 201> > > > > Chicago, IL 60642-2642> > > > > www.pulmonaryfibros is.org> > > > > Join our Facebook Community> > > > > http://www.facebook ..com/PulmonaryF ibrosisFoundatio n> > > > >

P> > > > > F> > > > >  > > > > >  A cure is just a breath away > > > > >   > > > > > > > > > > ÂÂ

[Guest guest]

Dave

I wasn't saying your way was wrong but I was explaining in response to

your posts why others do look. For many, preparing for a transplant is a

long process. The worst thing would be to get to the stage of needing

one but to not meet the weight requirements and be too immobile at that

point to lose. As to your choice, thats what makes you comfortable so

its fine.

> > > > > > >

> > > > > > >

> > > > > > > Hello all

> > > > > > > Â

> > > > > > > Just wanted to let you know that tomorrow morning Dr. Dan

> > Rose, President of the Pulmonary Fibrosis Foundation and Krysten

Knievel

> > will be on the Doctor Radio Show being interviewed by Dr. Fred Feit

on

> > Sirius and XM Satellite Radio -

> > > > > > > Â

> > > > > > > Wednesday November 25 6AM EST - 7AM EST

> > > > > > > The show will air live on Sirius channel 114 and XM

channel

> > 119. The show will repeat at 4PM EST that same day

> > > > > > > Â

> > > > > > > Please call in with questions:

> > > > > > > 877-NYU-DOCS ()

> > > > > > > Â

> > > > > > > You can sign up for a free 7-day trial if you are

interested

> > in hearing the interview:

> > > > > > > http://www.sirius. com/freetrial/ register

> > > > > > > Â

> > > > > > > We hope you will be able to tune into the Doctor Radio

> > show....

> > > > > > > Â

> > > > > > >

> > > > > > >

> > > > > > > Â

> > > > > > > Leanne Storch

> > > > > > > Executive Director

> > > > > > > Pulmonary Fibrosis Foundation

> > > > > > > 1332 N.. Halsted, Suite 201

> > > > > > > Chicago, IL 60642-2642

> > > > > > > www.pulmonaryfibros is.org

> > > > > > > Join our Facebook Community

> > > > > > > http://www.facebook..com/PulmonaryFibrosisFoundation

> > > > > > > P

> > > > > > > F

> > > > > > > Â

> > > > > > > Â A cure is just a breath away

> > > > > > > Â Â

> > > > > > >

> > > > > > > Â

[Guest guest]

Pink..Temple is not on the centers

for Excellence list!

Z fibriotic NSIP/05

Z 65, fibriotic NSIP/05/PA

And

“mild†PH/10/07

No,

NSIP was not self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to Darah and Sara 

    

“I’m

gonna be iron like a lion in Zionâ€Â  Bob Marley

Vinca

Minor-periwinkle is my flower

 

 

Joyce T Rosenberg wrote:

 

Temple University in Philadelphia is

another excellent center for ILD's and lung transplants

Pink Joyce R (IPF 3/06)  IFA 5/09

Pennsylvania

Donate Life

Listed 1/09 Inactive

4/09

www.transplantfund.org

From: davegreg11 <davegreg11 (AT) yahoo (DOT) com>

Subject: Re: Hey Terre - Update on my status

To: Breathe-Support

Date: Thursday, November 26, 2009, 10:54 AM

 

Hi,

You have 3 places in your area, University of Rochester (Rochester, NY)

, Cornell University (Manhattan), University of Penn. (Philadelphia) -

they all have special departments for ILD.

You should know your scores, ect. You need to take control of your

care, because as soon as you leave the Dr.'s office they are already

onto the next patient. Your need to keep records of every Dr. visit and

what was said, keep copies of all your test results and know how to

read them, ask questions about anything and everything, explore the

internet, and use this group as a resource.

You have to get past the intial shock and fight this. It sucks for all

of us, and I am still upset, but I have no other choice. Dave

> > > > >

> > > > >

> > > > > Hello all

> > > > >  

> > > > > Just wanted to let you know that tomorrow

morning Dr. Dan Rose, President of the Pulmonary Fibrosis Foundation

and Krysten Knievel will be on the Doctor Radio Show being interviewed

by Dr. Fred Feit on Sirius and XM Satellite Radio -

> > > > >  

> > > > > Wednesday November 25 6AM EST - 7AM EST

> > > > > The show will air live on Sirius channel 114

and XM channel 119. The show will repeat at 4PM EST that same day

> > > > >  

> > > > > Please call in with questions:

> > > > > 877-NYU-DOCS ()

> > > > >  

> > > > > You can sign up for a free 7-day trial if you

are interested in hearing the interview:

> > > > > http://www.sirius.

com/freetrial/ register

> > > > >  

> > > > > We hope you will be able to tune into the

Doctor Radio show....

> > > > >  

> > > > >

> > > > >

> > > > >  

> > > > > Leanne Storch

> > > > > Executive Director

> > > > > Pulmonary Fibrosis Foundation

> > > > > 1332 N.. Halsted, Suite 201

> > > > > Chicago, IL 60642-2642

> > > > > www.pulmonaryfibros is.org

> > > > > Join our Facebook Community

> > > > > http://www.facebook ..com/PulmonaryF

ibrosisFoundatio n

> > > > > P

> > > > > F

> > > > >  

> > > > >  A cure is just a breath away

> > > > >   

> > > > >

> > > > >  

[Guest guest]

don't forget, some people need other types of procedures before they can become a candidate for the "list to be listed"

or they might find something else that is a treatable condition

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Hey Terre - Update on my statusTo: Breathe-Support Date: Thursday, November 26, 2009, 12:26 PM

DaveI wasn't saying your way was wrong but I was explaining in response toyour posts why others do look. For many, preparing for a transplant is along process. The worst thing would be to get to the stage of needingone but to not meet the weight requirements and be too immobile at thatpoint to lose. As to your choice, thats what makes you comfortable soits fine.> > > > > > >> > > > > > >> > > > > > > Hello all> > > > > > > Â> > > > > > > Just wanted to let you know that tomorrow morning Dr. Dan> > Rose, President of the Pulmonary Fibrosis Foundation and KrystenKnievel> > will be on the Doctor Radio Show being interviewed by Dr. Fred Feiton> > Sirius and XM Satellite Radio -> > > > > > > Â> > > > > > >

Wednesday November 25 6AM EST - 7AM EST> > > > > > > The show will air live on Sirius channel 114 and XMchannel> > 119. The show will repeat at 4PM EST that same day> > > > > > > Â> > > > > > > Please call in with questions:> > > > > > > 877-NYU-DOCS ()> > > > > > > Â> > > > > > > You can sign up for a free 7-day trial if you areinterested> > in hearing the interview:> > > > > > > http://www.sirius. com/freetrial/ register> > > > > > > Â> > > > > > > We hope you will be able to tune into the Doctor Radio> > show....> > > > > > > Â> > > > > > >> > > > >

> >> > > > > > > Â> > > > > > > Leanne Storch> > > > > > > Executive Director> > > > > > > Pulmonary Fibrosis Foundation> > > > > > > 1332 N.. Halsted, Suite 201> > > > > > > Chicago, IL 60642-2642> > > > > > > www.pulmonaryfibros is.org> > > > > > > Join our Facebook Community> > > > > > > http://www.facebook ..com/PulmonaryF ibrosisFoundatio n> > > > > > > P> > > > > > > F> > > > > > > Â> > > > > > > Â A cure is just a breath away> > > > > > > Â Â> > > > > >

>> > > > > > > Â

[Guest guest]

Hi Joyce,

I haven't seen Temple listed as a center of excellence, but I know several of the doctors are quite informed about ILD's and transplants. What is your info?

AB

To: Breathe-Support Sent: Thu, November 26, 2009 11:36:54 AMSubject: Re: Re: Hey Terre - Update on my status

Temple University in Philadelphia is another excellent center for ILD's and lung transplants

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: davegreg11 <davegreg11 (AT) yahoo (DOT) com>Subject: Re: Hey Terre - Update on my statusTo: Breathe-Support@ yahoogroups. comDate: Thursday, November 26, 2009, 10:54 AM

Hi,You have 3 places in your area, University of Rochester (Rochester, NY) , Cornell University (Manhattan), University of Penn. (Philadelphia) - they all have special departments for ILD.You should know your scores, ect. You need to take control of your care, because as soon as you leave the Dr.'s office they are already onto the next patient. Your need to keep records of every Dr. visit and what was said, keep copies of all your test results and know how to read them, ask questions about anything and everything, explore the internet, and use this group as a resource.You have to get past the intial shock and fight this. It sucks for all of us, and I am still upset, but I have no other choice. Dave> > > > >> > > > > > > > > > Hello all>

> > > >  > > > > > Just wanted to let you know that tomorrow morning Dr. Dan Rose, President of the Pulmonary Fibrosis Foundation and Krysten Knievel will be on the Doctor Radio Show being interviewed by Dr. Fred Feit on Sirius and XM Satellite Radio - > > > > >  > > > > > Wednesday November 25 6AM EST - 7AM EST> > > > > The show will air live on Sirius channel 114 and XM channel 119. The show will repeat at 4PM EST that same day> > > > >  > > > > > Please call in with questions:> > > > > 877-NYU-DOCS ()> > > > >  > > > > > You can sign up for a free 7-day trial if you are interested in hearing the interview:> > > > > http://www.sirius./ com/freetrial/ register> > > > >

 > > > > > We hope you will be able to tune into the Doctor Radio show....> > > > >  > > > > > > > > > > > > > > >  > > > > > Leanne Storch> > > > > Executive Director> > > > > Pulmonary Fibrosis Foundation> > > > > 1332 N.. Halsted, Suite 201> > > > > Chicago, IL 60642-2642> > > > > www.pulmonaryfibros is.org> > > > > Join our Facebook Community> > > > > http://www.facebook..com/PulmonaryFibrosisFoundation> > > > > P> > > > > F> > > > >  > > > > >  A cure is just a breath away > > > > >

  > > > > > > > > > > ÂÂ

[Guest guest]

the pulmonary who made the diagnosis in 2006 recommended Temple or Penn

my personal opinion is that there is a political component to the "centers of excellence"

the important this is that the site specializes in ILD's

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Re: Hey Terre - Update on my statusTo: Breathe-Support Date: Thursday, November 26, 2009, 10:39 PM

Hi Joyce,

I haven't seen Temple listed as a center of excellence, but I know several of the doctors are quite informed about ILD's and transplants. What is your info?

AB

From: Joyce T Rosenberg <pinkrockybeach@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Thu, November 26, 2009 11:36:54 AMSubject: Re: Re: Hey Terre - Update on my status

Temple University in Philadelphia is another excellent center for ILD's and lung transplants

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: davegreg11 <davegreg11 (AT) yahoo (DOT) com>Subject: Re: Hey Terre - Update on my statusTo: Breathe-Support@ yahoogroups. comDate: Thursday, November 26, 2009, 10:54 AM

Hi,You have 3 places in your area, University of Rochester (Rochester, NY) , Cornell University (Manhattan), University of Penn. (Philadelphia) - they all have special departments for ILD.You should know your scores, ect. You need to take control of your care, because as soon as you leave the Dr.'s office they are already onto the next patient. Your need to keep records of every Dr. visit and what was said, keep copies of all your test results and know how to read them, ask questions about anything and everything, explore the internet, and use this group as a resource.You have to get past the intial shock and fight this. It sucks for all of us, and I am still upset, but I have no other choice. Dave> > > > >> > > > > > > > > > Hello all>

> > > >  > > > > > Just wanted to let you know that tomorrow morning Dr. Dan Rose, President of the Pulmonary Fibrosis Foundation and Krysten Knievel will be on the Doctor Radio Show being interviewed by Dr. Fred Feit on Sirius and XM Satellite Radio - > > > > >  > > > > > Wednesday November 25 6AM EST - 7AM EST> > > > > The show will air live on Sirius channel 114 and XM channel 119. The show will repeat at 4PM EST that same day> > > > >  > > > > > Please call in with questions:> > > > > 877-NYU-DOCS ()> > > > >  > > > > > You can sign up for a free 7-day trial if you are interested in hearing the interview:> > > > > http://www.sirius. / com/freetrial/ register> > > > >

 > > > > > We hope you will be able to tune into the Doctor Radio show....> > > > >  > > > > > > > > > > > > > > >  > > > > > Leanne Storch> > > > > Executive Director> > > > > Pulmonary Fibrosis Foundation> > > > > 1332 N.. Halsted, Suite 201> > > > > Chicago, IL 60642-2642> > > > > www.pulmonaryfibros is.org> > > > > Join our Facebook Community> > > > > http://www.facebook ..com/PulmonaryF ibrosisFoundatio n> > > > > P> > > > > F> > > > >  > > > > >  A cure is just a breath away > >

> > >   > > > > > > > > > > ÂÂ

[Guest guest]

linda

i know its not on the list

however it does have a department specializing in ild's

as i said to Adreinne earlier

i think there might be a political component to being on the centers for excellence list

it was a long time after joining this site that anyone even mentioned centers of excellence

the first time i looked at the Centers of excellence, there were only about 10 -15 listed and Penn wasn't on it at that time

so i personally don't give much credence to it

we are very fortunate that we live in a city that has 2 hospitals with departments specializing in ild's

the main thing is that people see pulmonologists who specialize in ILD's and have a lung transplant department

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Re: Hey Terre - Update on my statusTo: Breathe-Support Date: Thursday, November 26, 2009, 2:22 PM

Pink..Temple is not on the centers for Excellence list!

Z 65, fibriotic NSIP/05/PA

And “mild†PH/10/07

No, NSIP was not self-inflicted…I never smoked!

Potter, reader,carousel lover and MomMom to Darah and Sara

“I’m gonna be iron like a lion in Zion†Bob Marley

Vinca Minor-periwinkle is my flower

Joyce T Rosenberg wrote:

Temple University in Philadelphia is another excellent center for ILD's and lung transplants

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: davegreg11 <davegreg11 (AT) yahoo (DOT) com>Subject: Re: Hey Terre - Update on my statusTo: Breathe-Support@ yahoogroups. comDate: Thursday, November 26, 2009, 10:54 AM

Hi,You have 3 places in your area, University of Rochester (Rochester, NY) , Cornell University (Manhattan), University of Penn. (Philadelphia) - they all have special departments for ILD.You should know your scores, ect. You need to take control of your care, because as soon as you leave the Dr.'s office they are already onto the next patient. Your need to keep records of every Dr. visit and what was said, keep copies of all your test results and know how to read them, ask questions about anything and everything, explore the internet, and use this group as a resource.You have to get past the intial shock and fight this. It sucks for all of us, and I am still upset, but I have no other choice. Dave> > > > >> > > > > > > > > > Hello all> > > > >  > > > > > Just wanted to let you know that tomorrow morning Dr. Dan Rose, President of the Pulmonary Fibrosis Foundation and Krysten Knievel will be on the Doctor Radio Show being interviewed by Dr. Fred Feit on Sirius and XM Satellite Radio - > > > > >  > > > > > Wednesday November 25 6AM EST - 7AM EST> > > > > The show will air live on Sirius channel 114 and XM channel 119. The show will repeat at 4PM EST that same day> > > > >  > > > > > Please call in with questions:> > > > > 877-NYU-DOCS ()> > > > >  > > > > > You can sign up for a

free 7-day trial if you are interested in hearing the interview:> > > > > http://www.sirius. com/freetrial/ register> > > > >  > > > > > We hope you will be able to tune into the Doctor Radio show....> > > > >  > > > > > > > > > > > > > > >  > > > > > Leanne Storch> > > > > Executive Director> > > > > Pulmonary Fibrosis Foundation> > > > > 1332 N.. Halsted, Suite 201> > > > > Chicago, IL 60642-2642> > > > > www.pulmonaryfibros is.org> > > > > Join our Facebook Community> > > > >

http://www.facebook ..com/PulmonaryF ibrosisFoundatio n> > > > > P> > > > > F> > > > >  > > > > >  A cure is just a breath away > > > > >   > > > > > > > > > > ÂÂ

[Guest guest]

Joyce

I think when it comes to the Centers of Excellence they are simply a

group that it is easy for us to identify and know their general quality.

It does not mean that there aren't other excellent ILD centers and

Temple is one many are pleased with. Some of the teaching hospitals with

ILD centers that weren't part of the Centers of Excellence a year ago

were still good. It would be quite useful to hear of more non-Centers of

Excellence with quality ILD units.

I know Temple comes up occasionally and Shands. I think in the past

we've had members pleased with Jewish in Missouri. I have heard

good things too about the University of Minnesota and Loyola and I'm

sure there are many others. However, there are not a lot of facilities

with committed and dedicated ILD centers. ly, there are some of the

IPF centers I would not personally choose, but some of that is strictly

a personal impression or a feeling toward that facilities Lead

Investigator. Some of the recent additions were high on the list before

they became Centers of Excellence. It's easy to refer to the list of

Centers of Excellence and I've known people who have gone to most of

those. Outside that list its simply a matter of researching them and

finding others who have been.

Sometimes the choice is skewed by a very small sampling too. For

instance there is one Center of Excellence at a school that is among the

most highly ranked in the country. But its hard for me personally to get

beyond that the only member I know who went there didn't survive her

transplant and that their one year success rate is under 70%.

> > > > > >

> > > > > >

> > > > > > Hello all

> > > > > > ÂÂÂ

> > > > > > Just wanted to let you know that tomorrow morning Dr. Dan

Rose, President of the Pulmonary Fibrosis Foundation and Krysten Knievel

will be on the Doctor Radio Show being interviewed by Dr. Fred Feit on

Sirius and XM Satellite Radio -

> > > > > > ÂÂÂ

> > > > > > Wednesday November 25 6AM EST - 7AM EST

> > > > > > The show will air live on Sirius channel 114 and XM channel

119. The show will repeat at 4PM EST that same day

> > > > > > ÂÂÂ

> > > > > > Please call in with questions:

> > > > > > 877-NYU-DOCS ()

> > > > > > ÂÂÂ

> > > > > > You can sign up for a free 7-day trial if you are interested

in hearing the interview:

> > > > > > http://www.sirius. / com/freetrial/ register

> > > > > > ÂÂÂ

> > > > > > We hope you will be able to tune into the Doctor Radio

show....

> > > > > > ÂÂÂ

> > > > > >

> > > > > >

> > > > > > ÂÂÂ

> > > > > > Leanne Storch

> > > > > > Executive Director

> > > > > > Pulmonary Fibrosis Foundation

> > > > > > 1332 N.. Halsted, Suite 201

> > > > > > Chicago, IL 60642-2642

> > > > > > www.pulmonaryfibros is.org

> > > > > > Join our Facebook Community

> > > > > > http://www.facebook ..com/PulmonaryF ibrosisFoundatio n

> > > > > > P

> > > > > > F

> > > > > > ÂÂÂ

> > > > > >  A cure is just a breath away

> > > > > >  ÂÂÂ

> > > > > >

> > > > > > ÂÂÂ

[Guest guest]

Joyce,

I'm not certain what kind of politics you are referring to in connection with the ipfnet.org "centers of excellence" but I agree in general that the most important thing is to get to a university medical center that has specialists in interstitial lung disease. Temple is an excellent choice as is the center Peggy goes to in Florida, Shands.

The most important thing about the ipfnet.org centers in my opinion is the coordination of research efforts. Research will go farther, faster with cooperation between as many centers as possible. That's why the growth of the "centers of excellence" from 13 to 22 is exciting to me. Sharing knowledge is critical for us if we are ever to find truly effective treatments.

When I or someone else refer someone to www.ipfnet.org I try always to say 'or another university medical center with specialists in ILD". It's not enough just to go to a pulmonologist or even a university based pulmo who sees mostly emphysema or COPD or lung cancer. We are vastly different from those folks and we get the best care from our own specialists.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Fri, November 27, 2009 10:02:03 AMSubject: Re: Re: Hey Terre - Update on my status

the pulmonary who made the diagnosis in 2006 recommended Temple or Penn

my personal opinion is that there is a political component to the "centers of excellence"

the important this is that the site specializes in ILD's

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: davegreg11 <davegreg11 (AT) yahoo (DOT) com>Subject: Re: Hey Terre - Update on my statusTo: Breathe-Support@ yahoogroups. comDate: Thursday, November 26, 2009, 10:54 AM

Hi,You have 3 places in your area, University of Rochester (Rochester, NY) , Cornell University (Manhattan), University of Penn. (Philadelphia) - they all have special departments for ILD.You should know your scores, ect. You need to take control of your care, because as soon as you leave the Dr.'s office they are already onto the next patient. Your need to keep records of every Dr. visit and what was said, keep copies of all your test results and know how to read them, ask questions about anything and everything, explore the internet, and use this group as a resource.You have to get past the intial shock and fight this. It sucks for all of us, and I am still upset, but I have no other choice. Dave> > > > >> > > > > > > > > > Hello all>

> > > >  > > > > > Just wanted to let you know that tomorrow morning Dr. Dan Rose, President of the Pulmonary Fibrosis Foundation and Krysten Knievel will be on the Doctor Radio Show being interviewed by Dr. Fred Feit on Sirius and XM Satellite Radio - > > > > >  > > > > > Wednesday November 25 6AM EST - 7AM EST> > > > > The show will air live on Sirius channel 114 and XM channel 119. The show will repeat at 4PM EST that same day> > > > >  > > > > > Please call in with questions:> > > > > 877-NYU-DOCS 877-NYU-DOCS ( )> > > > >  > > > > > You can sign up for a free 7-day trial if you are interested in hearing the interview:>

> > > > http://www.sirius. / com/freetrial/ register> > > > >  > > > > > We hope you will be able to tune into the Doctor Radio show....> > > > >  > > > > > > > > > > > > > > >  > > > > > Leanne Storch> > > > > Executive Director> > > > > Pulmonary Fibrosis Foundation> > > > > 1332 N.. Halsted, Suite 201> > > > > Chicago, IL 60642-2642> > > > > www.pulmonaryfibros is.org> > > > > Join our Facebook Community> > > > > http://www.facebook ..com/PulmonaryF ibrosisFoundatio n> > > > > P> > > > > F> > > > >  > > > > >  A cure is just a breath away > > > > >   > > > > > > > > > > ÂÂ

[Guest guest]

Beth,I don't know if you know anything about the U of Iowa or Creighton University in Omaha, but my PCP recommended them to me since we are moving to Iowa in the beginning of next year.Kathy IPF 10/09 Type 2 diabetes forever ago

From: davegreg11 <davegreg11 (AT) yahoo (DOT) com>Subject: Re: Hey Terre - Update on my statusTo: Breathe-Support@ yahoogroups. comDate: Thursday, November 26, 2009, 10:54 AM

Hi,You have 3 places in your area, University of Rochester (Rochester, NY) , Cornell University (Manhattan), University of Penn. (Philadelphia) - they all have special departments for ILD.You should know your scores, ect. You need to take control of your care, because as soon as you leave the Dr.'s office they are already onto the next patient. Your need to keep records of every Dr. visit and what was said, keep copies of all your test results and know how to read them, ask questions about anything and everything, explore the internet, and use this group as a resource.You have to get past the intial shock and fight this. It sucks for all of us, and I am still upset, but I have no other choice. Dave> > > > >> > > > > > > > > > Hello all>

> > > >  > > > > > Just wanted to let you know that tomorrow morning Dr. Dan Rose, President of the Pulmonary Fibrosis Foundation and Krysten Knievel will be on the Doctor Radio Show being interviewed by Dr. Fred Feit on Sirius and XM Satellite Radio - > > > > >  > > > > > Wednesday November 25 6AM EST - 7AM EST> > > > > The show will air live on Sirius channel 114 and XM channel 119. The show will repeat at 4PM EST that same day> > > > >  > > > > > Please call in with questions:> > > > > 877-NYU-DOCS 877-NYU-DOCS ( )> > > > >  > > > > > You can sign up for a free 7-day trial if you are interested in hearing the interview:>

> > > > http://www.sirius. / com/freetrial/ register> > > > >  > > > > > We hope you will be able to tune into the Doctor Radio show....> > > > >  > > > > > > > > > > > > > > >  > > > > > Leanne Storch> > > > > Executive Director> > > > > Pulmonary Fibrosis Foundation> > > > > 1332 N.. Halsted, Suite 201> > > > > Chicago, IL 60642-2642> > > > > www.pulmonaryfibros is.org> > > > > Join our Facebook Community> > > > > http://www.facebook ..com/PulmonaryF ibrosisFoundatio n> > > > > P> > > > >

F> > > > >  > > > > >  A cure is just a breath away > > > > >   > > > > > > > > > > ÂÂ