Re: just a few questions for anyone who would like to answer

November 28, 2009

Hi nicnurs01,I have heard of Dr. Katzenstein. My biopsy was sent to her for a 2nd opinion after the path at my local hospital was unsure of the diagnosis. My doctor at UCLA said he valued her opinion immensely. He respected her and had worked with her a lot of times before. I hope that makes you feel more comfortable about the awful road we all travel with this disease.Kathy IPF 10/09 Type 2 diabetes forever agoSubject: just a few questions for anyone who would like to answerTo: Breathe-Support Date: Saturday, November 28, 2009, 9:35 PM

So I have been looking at the posts here and doing a lot of research on the net since I found out last week that I am thought to have UIP and now I have a few questions.

First I am suppose to meet with the pulomologist here in omaha on tuesday and I know he is going to want to start me on steriod therapy but i want to go to either denver or UCLA for a second opinion and think that the meds would interfer with the testing and results ANY THOUGHTS?

Second does anyone know how long it takes to get into one of the centers of excellence primarily UCLA or Denver. I am leaning towards these ones because Denver is closest to Omaha and would not be to hard to travel back and forth to. UCLA because my husbands Aunt was the coordinator for the heart lung transplant center until a few years ago when she retired so she knows all the guys involved with the lung transplant team the chief surgeon and so on. I am a firm believer that in healthcare you are better off if you know someone somewhere.

Third do any of you know anythin about a Dr. Anne-Louise Katzenstein with SUNY Syracuse? Is she associated with a center of excellence or a ILD center? she is the one who read my biopys as being UIP with large areas of inflammation. Just wondering if she is known in this field thanks for listening and helping me as I stumble down and very scary unfamilier road. I can tell you this has given me a much greater appreciaption for what the parents of my little patients go through as they watch their precious child lay in their incubators and listen to me tell them "We have no way of telling every baby is so different" those words have such a huge meaning to me know. This is definately one of the lessons I belive that my Lord wants me to take away from this struggle. Thank goodness I am listening. LOL Good night all and please advise!!!!

November 29, 2009

I don't know about steroids and how it might affect a second opinion. Have you

thought about going to the Mayo Clinic in Rochester, MN? The doctor I saw at

National Jewish in Denver did his residency at the Mayo and the Mayo is one of

the centers of excellence. I think it is closer to Omaha. It kinda depends on

your insurance and available time. I was able to get into Denver quite quickly,

but that isn't always the case. Don't know about the doctor. Yeah, all I can

do is wish you the best of luck. I had my biopsies read by 3 different

pathologists. The one I chose to believe is the one done in Denver because they

consulted with the doctor that actually saw me and interviewed me as well as was

aware of all of my other test results, which the other pathologists did not have

access to. Bruce is right... there are nuances to interpreting the scans.

Kinda " dicey " as it can and will be read differently. The local doctors almost

don't want to be involved with terminal patients and lack a lot of patient

skills (except for my thoracic surgeon who did the VATS... he was positively

wonderful).

Stefani 61 year old Utahn (transplant from Minnesota)

ILD 2/2006, NSIP (fibrotic) 10/2009, Diabetes II 2/2006, Sleep Apnea 4/2009

>

> Subject: just a few questions for anyone who would like to

answer

> To: Breathe-Support

> Date: Saturday, November 28, 2009, 9:35 PM

>

> Â

>

> So I have been looking at the posts here and doing a lot of research on

the net since I found out last week that I am thought to have UIP and now I have

a few questions.

>

> First I am suppose to meet with the pulomologist here in omaha on tuesday and

I know he is going to want to start me on steriod therapy but i want to go to

either denver or UCLA for a second opinion and think that the meds would

interfer with the testing and results ANY THOUGHTS?

>

> Second does anyone know how long it takes to get into one of the centers of

excellence primarily UCLA or Denver. I am leaning towards these ones because

Denver is closest to Omaha and would not be to hard to travel back and forth to.

UCLA because my husbands Aunt was the coordinator for the heart lung

transplant center until a few years ago when she retired so she knows all the

guys involved with the lung transplant team the chief surgeon and so on. I am a

firm believer that in healthcare you are better off if you know someone

somewhere.

>

> Third do any of you know anythin about a Dr. Anne-Louise Katzenstein with SUNY

Syracuse? Is she associated with a center of excellence or a ILD center? she is

the one who read my biopys as being UIP with large areas of inflammation. Just

wondering if she is known in this field thanks for listening and helping me as I

stumble down and very scary unfamilier road. I can tell you this has given me a

much greater appreciaption for what the parents of my little patients go through

as they watch their precious child lay in their incubators and listen to me tell

them " We have no way of telling every baby is so different " those words have

such a huge meaning to me know. This is definately one of the lessons I belive

that my Lord wants me to take away from this struggle. Thank goodness I am

listening. LOL Good night all and please advise!!!!

>

November 29, 2009

Tammy,

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sun, November 29, 2009 12:35:41 AMSubject: just a few questions for anyone who would like to answer

So I have been looking at the posts here and doing a lot of research on the net since I found out last week that I am thought to have UIP and now I have a few questions. First I am suppose to meet with the pulomologist here in omaha on tuesday and I know he is going to want to start me on steriod therapy but i want to go to either denver or UCLA for a second opinion and think that the meds would interfer with the testing and results ANY THOUGHTS?Second does anyone know how long it takes to get into one of the centers of excellence primarily UCLA or Denver. I am leaning towards these ones because Denver is closest to Omaha and would not be to hard to travel back and forth to. UCLA because my husbands Aunt was the coordinator for the heart lung transplant center until a few years ago when she retired so she knows all the guys involved with the lung transplant team the chief surgeon and so on. I am a firm believer that in healthcare you are

better off if you know someone somewhere. Third do any of you know anythin about a Dr. Anne-Louise Katzenstein with SUNY Syracuse? Is she associated with a center of excellence or a ILD center? she is the one who read my biopys as being UIP with large areas of inflammation. Just wondering if she is known in this field thanks for listening and helping me as I stumble down and very scary unfamilier road. I can tell you this has given me a much greater appreciaption for what the parents of my little patients go through as they watch their precious child lay in their incubators and listen to me tell them "We have no way of telling every baby is so different" those words have such a huge meaning to me know. This is definately one of the lessons I belive that my Lord wants me to take away from this struggle. Thank goodness I am listening. LOL Good night all and please advise!!!!

November 29, 2009

Tammy,

Sorry for the blank post. I'm still working on my first cup of coffee this morning and probably shouldn't type till the caffeine has had a chance to work on my brain.

I don't have any knowledge of Dr. Katzsenstein but it appears Kathy has. Honestly I would go ahead with it. The more knowledgeable people who weigh in, the better off you are at this point.

As far as where to go next my personal bias would be National Jewish in Denver but because we've had several members in the last year who have been extremely pleased with the care they've received there. I do understand your inclination towards UCLA and the tie in you have because of your husbands aunt. I ended up at Duke originally because my sister is a perinatologist and an associate professor at Duke medical school. Now I'm convinced it's the right place for me for many reasons but she was the main reason I ended up here initially.

Your question about steroids hits home with me. When I was diagnosed back in 2006 I was in the hospital acutely ill. I was a mess. Sats in the 70's upon the slightest exertion (like lifting my fanny onto a bedpan), congestive heart failure, rampant inflammation in my lungs, you get the picture. They started me on high doses of solumedrol and when I was discharged I went home on 100mg daily prednisone. I have no regrets about this. ly it saved my life. What it did in addition however was mask the dermatomyositis that went undiagnosed for another 2 and a half years. I was finally diagnosed and the mystery of why I have nsip was solved just about a year ago. I'm now being treated with Imuran for the DM with the hope that it may also slow any progress of the fibrosis.Obviously you have to make your own decisions about treatment. It might be worth thinking about delaying steroids at

least until you consult with the experts that you choose. Steroids can and will change lab values, reduce inflammation and make it difficult to see the full picture of what's going on in your body.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sun, November 29, 2009 12:35:41 AMSubject: just a few questions for anyone who would like to answer

So I have been looking at the posts here and doing a lot of research on the net since I found out last week that I am thought to have UIP and now I have a few questions. First I am suppose to meet with the pulomologist here in omaha on tuesday and I know he is going to want to start me on steriod therapy but i want to go to either denver or UCLA for a second opinion and think that the meds would interfer with the testing and results ANY THOUGHTS?Second does anyone know how long it takes to get into one of the centers of excellence primarily UCLA or Denver. I am leaning towards these ones because Denver is closest to Omaha and would not be to hard to travel back and forth to. UCLA because my husbands Aunt was the coordinator for the heart lung transplant center until a few years ago when she retired so she knows all the guys involved with the lung transplant team the chief surgeon and so on. I am a firm believer that in healthcare you are

better off if you know someone somewhere. Third do any of you know anythin about a Dr. Anne-Louise Katzenstein with SUNY Syracuse? Is she associated with a center of excellence or a ILD center? she is the one who read my biopys as being UIP with large areas of inflammation. Just wondering if she is known in this field thanks for listening and helping me as I stumble down and very scary unfamilier road. I can tell you this has given me a much greater appreciaption for what the parents of my little patients go through as they watch their precious child lay in their incubators and listen to me tell them "We have no way of telling every baby is so different" those words have such a huge meaning to me know. This is definately one of the lessons I belive that my Lord wants me to take away from this struggle. Thank goodness I am listening. LOL Good night all and please advise!!!!

November 29, 2009

Tammy

A regimen of steroids prior to National Jewish or UCLA has the potential

of suppressing some of the labs as well as clinical signs on connective

tissue diseases and/or on certain forms of PF. Now the fact you might be

better is a positive but again they wouldn't really have their own

baseline to compare against. I would get there as soon as possible and

unless there was a pressing need to being treatment I'd strongly

consider delaying until you saw them. Now, if you had a feel you needed

to jump on into treatment I would discuss it with National Jewish or

UCLA. At the minimum there might be some labs or tests they would want

you to have even at home first.

>

> Tammy,

> Sorry for the blank post. I'm still working on my first cup of coffee

this morning and probably shouldn't type till the caffeine has had a

chance to work on my brain.

>

> I don't have any knowledge of Dr. Katzsenstein but it appearsÂ

Kathy has. Honestly I would go ahead with it. The more knowledgeableÂ

people who weigh in, the better off you are at this point.

> As far as where to go next my personal bias would be National Jewish

in Denver but because we've had several members in the last yearÂ who

have been extremely pleased with the care they've received there. I do

understand your inclination towards UCLAÂ and the tie in you have

because of your husbands aunt. I ended up at Duke originally because my

sister is a perinatologist and an associate professorÂ at Duke

medical school. Now I'm convinced it's the right place for me forÂ

many reasons but she wasÂ the main reason I ended up here initially.

>

> Your question about steroids hits home with me. When I was diagnosed

back in 2006 I was inÂ the hospital acutely ill.Â I was a mess.

Sats in the 70's upon theÂ slightest exertion (like lifting my fanny

onto a bedpan), congestive heart failure, rampant inflammation in my

lungs, you get the picture.Â They started me on high doses ofÂ

solumedrol and when I was discharged I went home on 100mg dailyÂ

prednisone.Â I have no regrets about this.Â ly it saved my

life. What it did in addition however was mask the dermatomyositis that

went undiagnosed for another 2 and a half years.Â I was finally

diagnosed and the mystery of why I haveÂ nsip was solved just about a

year ago. I'm now being treated with Imuran for the DM with the hope

that it may also slow any progress of theÂ fibrosis.

> Obviously you have to make yourÂ own decisions about treatment. It

might be worth thinking about delaying steroids at least until you

consult with the experts that you choose.Â Steroids can andÂ Â

will change lab values, reduce inflammation andÂ makeÂ it

difficultÂ to see the full picture of what's going on inÂ your

body.

>

> Beth

> Moderator

> Fibrotic NSIP 06/06 Dermatomyositis 11/08

> Â

>

> ________________________________

> From: nicunrs01 nicunrs01@...

> To: Breathe-Support

> Sent: Sun, November 29, 2009 12:35:41 AM

> Subject: just a few questions for anyone who would

like to answer

>

> Â

> So I have been looking at the posts here and doing a lot of research

on the net since I found out last week that I am thought to have UIP and

now I have a few questions.

> First I am suppose to meet with the pulomologist here in omaha on

tuesday and I know he is going to want to start me on steriod therapy

but i want to go to either denver or UCLA for a second opinion and think

that the meds would interfer with the testing and results ANY THOUGHTS?

> Second does anyone know how long it takes to get into one of the

centers of excellence primarily UCLA or Denver. I am leaning towards

these ones because Denver is closest to Omaha and would not be to hard

to travel back and forth to. UCLA because my husbands Aunt was the

coordinator for the heart lung transplant center until a few years ago

when she retired so she knows all the guys involved with the lung

transplant team the chief surgeon and so on. I am a firm believer that

in healthcare you are better off if you know someone somewhere.

> Third do any of you know anythin about a Dr. Anne-Louise Katzenstein

with SUNY Syracuse? Is she associated with a center of excellence or a

ILD center? she is the one who read my biopys as being UIP with large

areas of inflammation. Just wondering if she is known in this field

thanks for listening and helping me as I stumble down and very scary

unfamilier road. I can tell you this has given me a much greater

appreciaption for what the parents of my little patients go through as

they watch their precious child lay in their incubators and listen to me

tell them " We have no way of telling every baby is so different " those

words have such a huge meaning to me know. This is definately one of the

lessons I belive that my Lord wants me to take away from this struggle.

Thank goodness I am listening. LOL Good night all and please advise!!!!

>

November 29, 2009

Hi there,

I was at National Jewish Hospital in Denver in October. I got an appointment in

less than six weeks by applying online. It took them about two weeks to call me

to make it.

http://www.nationaljewish.org/

After your evaluation you will feel as if no stone was left unturned. They are

friendly, supportive and at no time do you feel lost as it is not a huge area

where all testing is done. Very convenient. They send you a list of places to

stay and tell you what to bring. I hope this helps. If you would like more just

ask as there are many of us who have been there. It is my understanding there

are others with the same quality of care.

ann

>

> So I have been looking at the posts here and doing a lot of research on the

net since I found out last week that I am thought to have UIP and now I have a

few questions.