Re: Hi, I'm new.... got just tons of questions...

[Guest guest]

Stefani,

Welcome to Breathe Support. We always tell new members that we're sorry you had reason to look for a group like this but since you did we're glad you found us. I am so sorry that you've had to face this horrendous illness. We all understand here. We've all been down the road you're on and in lots of different ways and to varying degrees we've learned to cope and go on with our lives.

It sounds like you've done alot of running around chasing information. It's so frustrating isn't it? You didn't say precisely where you live but you might want to take a look at the map here: www.ipfnet.org It lists 16 different teaching hospitals that have joined forces to provide coordinated care to pulmonary fibrosis patients. They all adhere to similar standards and cooperate with each other, sharing information and research. If you live in Utah it looks as though the closest one to you would be National Jewish in Denver. We have someone here on the board who was seen there recently and reports a very good experience.

I'm curious about the "exploratory surgery" that one doctor wanted to do. Was it a lung biopsy? Many of us have had one done and I can't imagine what other kind of surgery they would have wanted to do. Also when the doctor orders a ct scan it's best to request he order a high resolution ct scan as they get much much more information from and HRCT than from an ordinary ct scan. Have you had a full pulmonary function test? That will also give you alot of information.

I would suggest you read some of the archived messages. There's so much information in there. Feel free to ask any questions you want or vent anything you want to. I hope that you can find the support and friendship here that I have!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Thursday, April 16, 2009 6:00:16 PMSubject: Hi, I'm new.... got just tons of questions...

I was diagnosed with Ideopathic Interstitial Lung Disease in February of 2006 and the Pulmonary Specialist wanted to crack my chest and do exploratory surgery. I opted out and have been looking for options and places to go for a second opinion. My husband's company recently added a benefit that included a (no cost to us) second opinion option through Boston's Best Doctors. Upshot was that it was not an ACTIVE Interstitial Lung Disease, No-I should not let the Pulmonary Specialist do the exploratory surgery. To establish a good diagnosis, it was recommended that I see an academic pulmonary specialist and request a CPAP titration (never had a CPAP test though they put me on 2L of O2 at night when I came into the Dr.'s office with Shortness of Breath)., get a blood gas test, and a full batch of lung volume tests as well as another CT scan (the original was in January of 2006). My regular GP ordered the CT and called me in less than a week to tell me she

was sorry I had Pulmonary Fibrosis and if I needed anything, to giver her a call! I haven't even finished the CPAP stuff and have not had any of the other tests run. The Best Doctors would not give me a referral to the University of Utah Pulmonary Rehabilitation program because there was not enough information to warrant the referral.... So that is the level of frustration I am at today. I have contacted our insurance company to see what they will cover and where... it has been 2 weeks since I talked to them and they are not answering my emails. I just had to vent. Sorry. If anyone has a comment, please feel free to add to this post.Stefani

[Guest guest]

Welcome Stefani... from Australia here... Beth has given you sound advice... one thing I'll add to help staright off is that PF stands for 'Pulmonary Fibrosis' while 'IPF' stands for 'Idiopathic Pulmonary Fibrosis'... the word 'Idiopathic' indicating that it's a form pf PF for which no cause has been found. There are over 200 forms of PF so figuring out where yours 'fits' is a huge part of the initial diagnostic process. Treatment options will be determined by knowing where you 'fit'!

It's a very little understood disease & to make it all the more confusing worldwide terminology is insonsistent. There are lots of terms used that basically mean the same thing OR may in fact refer to one of the different TYPES of PF.

You've got a lot of reading to do.....Mr Google is also very helpful!

Good Luck & keep us posted on your journey... there's lots of wiling support here.

Regards,

in Oz

IPF: Fibrotic NSIP/UIP????

Raynauds'

may 2007

Ro52

May 2008

>> Stefani,> Welcome to Breathe Support. We always tell new members that we're sorry you had reason to look for a group like this but since you did we're glad you found us. I am so sorry that you've had to face this horrendous illness. We all understand here. We've all been down the road you're on and in lots of different ways and to varying degrees we've learned to cope and go on with our lives. > > It sounds like you've done alot of running around chasing information. It's so frustrating isn't it? You didn't say precisely where you live but you might want to take a look at the map here: www.ipfnet.org It lists 16 different teaching hospitals that have joined forces to provide coordinated care to pulmonary fibrosis patients. They all adhere to similar standards and cooperate with each other, sharing information and research. If you live in Utah it looks as though the closest one to you would be National Jewish in Denver. We have someone here on the board who was seen there recently and reports a very good experience.> > I'm curious about the "exploratory surgery" that one doctor wanted to do. Was it a lung biopsy? Many of us have had one done and I can't imagine what other kind of surgery they would have wanted to do. Also when the doctor orders a ct scan it's best to request he order a high resolution ct scan as they get much much more information from and HRCT than from an ordinary ct scan. Have you had a full pulmonary function test? That will also give you alot of information. > > I would suggest you read some of the archived messages. There's so much information in there. Feel free to ask any questions you want or vent anything you want to. I hope that you can find the support and friendship here that I have!> > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > > > ________________________________> To: Breathe-Support > Sent: Thursday, April 16, 2009 6:00:16 PM> Subject: Hi, I'm new.... got just tons of questions...> > > > > > I was diagnosed with Ideopathic Interstitial Lung Disease in February of 2006 and the Pulmonary Specialist wanted to crack my chest and do exploratory surgery. I opted out and have been looking for options and places to go for a second opinion. My husband's company recently added a benefit that included a (no cost to us) second opinion option through Boston's Best Doctors. Upshot was that it was not an ACTIVE Interstitial Lung Disease, No-I should not let the Pulmonary Specialist do the exploratory surgery. To establish a good diagnosis, it was recommended that I see an academic pulmonary specialist and request a CPAP titration (never had a CPAP test though they put me on 2L of O2 at night when I came into the Dr.'s office with Shortness of Breath)., get a blood gas test, and a full batch of lung volume tests as well as another CT scan (the original was in January of 2006). My regular GP ordered the CT and called me in less than a week to tell me she was> sorry I had Pulmonary Fibrosis and if I needed anything, to giver her a call! I haven't even finished the CPAP stuff and have not had any of the other tests run. The Best Doctors would not give me a referral to the University of Utah Pulmonary Rehabilitation program because there was not enough information to warrant the referral.... So that is the level of frustration I am at today. I have contacted our insurance company to see what they will cover and where... it has been 2 weeks since I talked to them and they are not answering my emails. > > I just had to vent. Sorry. If anyone has a comment, please feel free to add to this post.> > Stefani>

[Guest guest]

Welcome Stefani... from Australia here... Beth has given you sound advice... one thing I'll add to help staright off is that PF stands for 'Pulmonary Fibrosis' while 'IPF' stands for 'Idiopathic Pulmonary Fibrosis'... the word 'Idiopathic' indicating that it's a form pf PF for which no cause has been found. There are over 200 forms of PF so figuring out where yours 'fits' is a huge part of the initial diagnostic process. Treatment options will be determined by knowing where you 'fit'!

It's a very little understood disease & to make it all the more confusing worldwide terminology is insonsistent. There are lots of terms used that basically mean the same thing OR may in fact refer to one of the different TYPES of PF.

You've got a lot of reading to do.....Mr Google is also very helpful!

Good Luck & keep us posted on your journey... there's lots of wiling support here.

Regards,

in Oz

IPF: Fibrotic NSIP/UIP????

Raynauds'

may 2007

Ro52

May 2008

>> Stefani,> Welcome to Breathe Support. We always tell new members that we're sorry you had reason to look for a group like this but since you did we're glad you found us. I am so sorry that you've had to face this horrendous illness. We all understand here. We've all been down the road you're on and in lots of different ways and to varying degrees we've learned to cope and go on with our lives. > > It sounds like you've done alot of running around chasing information. It's so frustrating isn't it? You didn't say precisely where you live but you might want to take a look at the map here: www.ipfnet.org It lists 16 different teaching hospitals that have joined forces to provide coordinated care to pulmonary fibrosis patients. They all adhere to similar standards and cooperate with each other, sharing information and research. If you live in Utah it looks as though the closest one to you would be National Jewish in Denver. We have someone here on the board who was seen there recently and reports a very good experience.> > I'm curious about the "exploratory surgery" that one doctor wanted to do. Was it a lung biopsy? Many of us have had one done and I can't imagine what other kind of surgery they would have wanted to do. Also when the doctor orders a ct scan it's best to request he order a high resolution ct scan as they get much much more information from and HRCT than from an ordinary ct scan. Have you had a full pulmonary function test? That will also give you alot of information. > > I would suggest you read some of the archived messages. There's so much information in there. Feel free to ask any questions you want or vent anything you want to. I hope that you can find the support and friendship here that I have!> > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > > > ________________________________> To: Breathe-Support > Sent: Thursday, April 16, 2009 6:00:16 PM> Subject: Hi, I'm new.... got just tons of questions...> > > > > > I was diagnosed with Ideopathic Interstitial Lung Disease in February of 2006 and the Pulmonary Specialist wanted to crack my chest and do exploratory surgery. I opted out and have been looking for options and places to go for a second opinion. My husband's company recently added a benefit that included a (no cost to us) second opinion option through Boston's Best Doctors. Upshot was that it was not an ACTIVE Interstitial Lung Disease, No-I should not let the Pulmonary Specialist do the exploratory surgery. To establish a good diagnosis, it was recommended that I see an academic pulmonary specialist and request a CPAP titration (never had a CPAP test though they put me on 2L of O2 at night when I came into the Dr.'s office with Shortness of Breath)., get a blood gas test, and a full batch of lung volume tests as well as another CT scan (the original was in January of 2006). My regular GP ordered the CT and called me in less than a week to tell me she was> sorry I had Pulmonary Fibrosis and if I needed anything, to giver her a call! I haven't even finished the CPAP stuff and have not had any of the other tests run. The Best Doctors would not give me a referral to the University of Utah Pulmonary Rehabilitation program because there was not enough information to warrant the referral.... So that is the level of frustration I am at today. I have contacted our insurance company to see what they will cover and where... it has been 2 weeks since I talked to them and they are not answering my emails. > > I just had to vent. Sorry. If anyone has a comment, please feel free to add to this post.> > Stefani>

[Guest guest]

Welcome Stefani... from Australia here... Beth has given you sound advice... one thing I'll add to help staright off is that PF stands for 'Pulmonary Fibrosis' while 'IPF' stands for 'Idiopathic Pulmonary Fibrosis'... the word 'Idiopathic' indicating that it's a form pf PF for which no cause has been found. There are over 200 forms of PF so figuring out where yours 'fits' is a huge part of the initial diagnostic process. Treatment options will be determined by knowing where you 'fit'!

It's a very little understood disease & to make it all the more confusing worldwide terminology is insonsistent. There are lots of terms used that basically mean the same thing OR may in fact refer to one of the different TYPES of PF.

You've got a lot of reading to do.....Mr Google is also very helpful!

Good Luck & keep us posted on your journey... there's lots of wiling support here.

Regards,

in Oz

IPF: Fibrotic NSIP/UIP????

Raynauds'

may 2007

Ro52

May 2008

>> Stefani,> Welcome to Breathe Support. We always tell new members that we're sorry you had reason to look for a group like this but since you did we're glad you found us. I am so sorry that you've had to face this horrendous illness. We all understand here. We've all been down the road you're on and in lots of different ways and to varying degrees we've learned to cope and go on with our lives. > > It sounds like you've done alot of running around chasing information. It's so frustrating isn't it? You didn't say precisely where you live but you might want to take a look at the map here: www.ipfnet.org It lists 16 different teaching hospitals that have joined forces to provide coordinated care to pulmonary fibrosis patients. They all adhere to similar standards and cooperate with each other, sharing information and research. If you live in Utah it looks as though the closest one to you would be National Jewish in Denver. We have someone here on the board who was seen there recently and reports a very good experience.> > I'm curious about the "exploratory surgery" that one doctor wanted to do. Was it a lung biopsy? Many of us have had one done and I can't imagine what other kind of surgery they would have wanted to do. Also when the doctor orders a ct scan it's best to request he order a high resolution ct scan as they get much much more information from and HRCT than from an ordinary ct scan. Have you had a full pulmonary function test? That will also give you alot of information. > > I would suggest you read some of the archived messages. There's so much information in there. Feel free to ask any questions you want or vent anything you want to. I hope that you can find the support and friendship here that I have!> > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > > > ________________________________> To: Breathe-Support > Sent: Thursday, April 16, 2009 6:00:16 PM> Subject: Hi, I'm new.... got just tons of questions...> > > > > > I was diagnosed with Ideopathic Interstitial Lung Disease in February of 2006 and the Pulmonary Specialist wanted to crack my chest and do exploratory surgery. I opted out and have been looking for options and places to go for a second opinion. My husband's company recently added a benefit that included a (no cost to us) second opinion option through Boston's Best Doctors. Upshot was that it was not an ACTIVE Interstitial Lung Disease, No-I should not let the Pulmonary Specialist do the exploratory surgery. To establish a good diagnosis, it was recommended that I see an academic pulmonary specialist and request a CPAP titration (never had a CPAP test though they put me on 2L of O2 at night when I came into the Dr.'s office with Shortness of Breath)., get a blood gas test, and a full batch of lung volume tests as well as another CT scan (the original was in January of 2006). My regular GP ordered the CT and called me in less than a week to tell me she was> sorry I had Pulmonary Fibrosis and if I needed anything, to giver her a call! I haven't even finished the CPAP stuff and have not had any of the other tests run. The Best Doctors would not give me a referral to the University of Utah Pulmonary Rehabilitation program because there was not enough information to warrant the referral.... So that is the level of frustration I am at today. I have contacted our insurance company to see what they will cover and where... it has been 2 weeks since I talked to them and they are not answering my emails. > > I just had to vent. Sorry. If anyone has a comment, please feel free to add to this post.> > Stefani>

[Guest guest]

Beth -

Thanks for responding. Yes, I live in Utah. They did one kind of biopsy with

the tube down my nose (took 7 snippets of lung tissue) and those slide results

were sent to Best Doctors also. The next step was the 'exploratory' to get

larger tissue samples. Yes, I live in Utah and I will indeed check out the link

you provided. I have not yet had a lung function test other than spirometry.

This was also in the list of recommendations out of Best Doctors. I just feel

like no one has done their homework but me because I have spent 3 years just

getting this information on my own. Thanks ever so much for your support.

Stefani

[Guest guest]

Beth -

Thanks for responding. Yes, I live in Utah. They did one kind of biopsy with

the tube down my nose (took 7 snippets of lung tissue) and those slide results

were sent to Best Doctors also. The next step was the 'exploratory' to get

larger tissue samples. Yes, I live in Utah and I will indeed check out the link

you provided. I have not yet had a lung function test other than spirometry.

This was also in the list of recommendations out of Best Doctors. I just feel

like no one has done their homework but me because I have spent 3 years just

getting this information on my own. Thanks ever so much for your support.

Stefani

[Guest guest]

-

Yeah, I have the ideopathic down. They have not been able to tell me what has

caused it. My doctor (GP) said PF. The Pulmonologist said Ideopathic

Interstitial Lung Disease (yeah, 150 different kinds). And the heart specialist

got upset with me when I told him that being told you have Ideopathic ANYTHING

is like saying to someone that yest they are sick, but not quite sure what they

have. My heart function tests came back real good, or at least that is what my

GP says. I get so frustrated because I am not getting consistent reports. I

read the results from the heart doctor and took something completely different.

My right ventrical is slightly enlarged (probably due to the sleep apnea that I

know I have had most of my adult life, but never been tested for). Went for my

first sleep apnea test last night... again, have to wait for results. I love

this site because I get the impression that most everyone has been down this

here has been down this lonely road. And yes, I have been googling my little

heart out because NONE of my doctors so far have taken any time to explain

anything to me. Didn't realize the gravity of the diagnoses until I started

gooogling. My family (husband and two mid-20 children) thinks that the doctors

are wrong and that it is " something else " . Another good reason to go to this

support group. Thanks again for the input.

Stefani

[Guest guest]

Stefani

welcome to the group, sorry you need to be here

did you ask your GP for a referral to a teaching hospital that specializes in IDLs?

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09 inactive 4/09

www.transplantfund.org---

Subject: Hi, I'm new.... got just tons of questions...To: Breathe-Support Date: Thursday, April 16, 2009, 6:00 PM

I was diagnosed with Ideopathic Interstitial Lung Disease in February of 2006 and the Pulmonary Specialist wanted to crack my chest and do exploratory surgery. I opted out and have been looking for options and places to go for a second opinion. My husband's company recently added a benefit that included a (no cost to us) second opinion option through Boston's Best Doctors. Upshot was that it was not an ACTIVE Interstitial Lung Disease, No-I should not let the Pulmonary Specialist do the exploratory surgery. To establish a good diagnosis, it was recommended that I see an academic pulmonary specialist and request a CPAP titration (never had a CPAP test though they put me on 2L of O2 at night when I came into the Dr.'s office with Shortness of Breath)., get a blood gas test, and a full batch of lung volume tests as well as another CT scan (the original was in January of 2006). My regular GP ordered the CT and called me in less than a week to tell me

she was sorry I had Pulmonary Fibrosis and if I needed anything, to giver her a call! I haven't even finished the CPAP stuff and have not had any of the other tests run. The Best Doctors would not give me a referral to the University of Utah Pulmonary Rehabilitation program because there was not enough information to warrant the referral.... So that is the level of frustration I am at today. I have contacted our insurance company to see what they will cover and where... it has been 2 weeks since I talked to them and they are not answering my emails. I just had to vent. Sorry. If anyone has a comment, please feel free to add to this post.Stefani

[Guest guest]

My GP said that she could not set up the Pulmonary Function tests and she asked

me for a list of insurance approved doctors. That doctor said he could

not/would not see me because he specialized in pulmonary hypertension and that

wasn't my 'diagnosis'. Go figure. He then recommended another academic

physician that, unfortunately was not approved by my insurance. We have a new

enrollment period coming up in July and are seriously considering changing. We

were also looking at going to the Mayo Clinic in Arizona, but our insurance does

not cover them either. I contacted the insurance company two weeks ago for a

case review and a list of approved recommended specialists that I could see

under their plan.... still waiting to hear back. I told them I would consider

Colorado or California as optional places to go. I forwarded the list of

recommended procedures and the suggested academic associated pulmonologist so

that they could see this was not my idea that I am only trying to work this out

reasonably and look at my options.

>

> From: sfshaner

> Subject: Hi, I'm new.... got just tons of questions...

> To: Breathe-Support

> Date: Thursday, April 16, 2009, 6:00 PM

>

>

>

>

>

>

>

>

> I was diagnosed with Ideopathic Interstitial Lung Disease in February of 2006

and the Pulmonary Specialist wanted to crack my chest and do exploratory

surgery. I opted out and have been looking for options and places to go for a

second opinion. My husband's company recently added a benefit that included a

(no cost to us) second opinion option through Boston's Best Doctors. Upshot was

that it was not an ACTIVE Interstitial Lung Disease, No-I should not let the

Pulmonary Specialist do the exploratory surgery. To establish a good diagnosis,

it was recommended that I see an academic pulmonary specialist and request a

CPAP titration (never had a CPAP test though they put me on 2L of O2 at night

when I came into the Dr.'s office with Shortness of Breath)., get a blood gas

test, and a full batch of lung volume tests as well as another CT scan (the

original was in January of 2006). My regular GP ordered the CT and called me in

less than a week to tell me she was

> sorry I had Pulmonary Fibrosis and if I needed anything, to giver her a call!

I haven't even finished the CPAP stuff and have not had any of the other tests

run. The Best Doctors would not give me a referral to the University of Utah

Pulmonary Rehabilitation program because there was not enough information to

warrant the referral.... So that is the level of frustration I am at today. I

have contacted our insurance company to see what they will cover and where... it

has been 2 weeks since I talked to them and they are not answering my emails.

>

> I just had to vent. Sorry. If anyone has a comment, please feel free to add to

this post.

>

> Stefani

>

[Guest guest]

The only pulmonologist I have seen was the one that said the only other thing he

could do was crack open my chest and do the biopsies. He has already done the

biopsies going in through my nasal cavity and too 7 samples. That info was sent

to Boston and the Best Doctors organization. The original pulmonologist dx'd

ILD. Best Doctors sent me a letter back saying it was inconclusive from all of

the information they received from the pulmonologist and recommended the CPAP,

another CT scan, a full series of Pulmonary Function tests (I have only had

spirometry done), and a blood gases test. All of this info was sent back to my

GP and she received a copy of the letter as well. She ordered the CT scan and

called me to tell me I have PF. She said she could not order the pulmonary

function test. She asked me for a list of doctors approved by my insurance...

and that doctor said he wouldn't take me because it was not his specialty of

pulmonary hypertension. Go figure. He recommended another specialist, one that

is not covered by my insurance. I contacted my insurance company and they said

they would have someone review my case. That person called me two weeks ago

last Thursday. I sent an email Thursday morning asking if there was additional

information they needed and why did they not get back to me. Today I sent a

list of clinics that may be able to help me and asked if they covered any of

them... I listed the Jewish Medical Center in Denver as that would be my first

preference. I have little or no confidence here in Salt Lake as I feel like I

have been hung out to dry. I will not go down without a fight. The first

chance to change covereage is July 1. I have been on everyone's case and do not

trust the original pulmonologist as he put me on the 60 mg of prednisone without

checking my stats to know I was borderline diabetic. He then left the country

(went home to India) for a month and I was advised by his office to see my GP if

I was having any problems.... that is tantamount to mal-practice in my book, but

I am trying to be nice. These are the reasons I am looking outside of my state.

This group has been a god-send because you are all wonderful founts of good

information.... Thanks for sharing and caring!!

Stef

>

> I was diagnosed with Ideopathic Interstitial Lung Disease in February of 2006

and the Pulmonary Specialist wanted to crack my chest and do exploratory

surgery. I opted out and have been looking for options and places to go for a

second opinion. My husband's company recently added a benefit that included a

(no cost to us) second opinion option through Boston's Best Doctors. Upshot was

that it was not an ACTIVE Interstitial Lung Disease, No-I should not let the

Pulmonary Specialist do the exploratory surgery. To establish a good diagnosis,

it was recommended that I see an academic pulmonary specialist and request a

CPAP titration (never had a CPAP test though they put me on 2L of O2 at night

when I came into the Dr.'s office with Shortness of Breath)., get a blood gas

test, and a full batch of lung volume tests as well as another CT scan (the

original was in January of 2006). My regular GP ordered the CT and called me in

less than a week to tell me she was sorry I had Pulmonary Fibrosis and if I

needed anything, to giver her a call! I haven't even finished the CPAP stuff

and have not had any of the other tests run. The Best Doctors would not give me

a referral to the University of Utah Pulmonary Rehabilitation program because

there was not enough information to warrant the referral.... So that is the

level of frustration I am at today. I have contacted our insurance company to

see what they will cover and where... it has been 2 weeks since I talked to them

and they are not answering my emails.

>

> I just had to vent. Sorry. If anyone has a comment, please feel free to add

to this post.

>

> Stefani

>

[Guest guest]

This is a lot of info...takes me some time to absorb it.

Can you look for another pulmodude

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

Re: Hi, I'm new.... got just tons of questions...

The only pulmonologist I have seen was the one that said the only other thing he could do was crack open my chest and do the biopsies. He has already done the biopsies going in through my nasal cavity and too 7 samples. That info was sent to Boston and the Best Doctors organization. The original pulmonologist dx'd ILD. Best Doctors sent me a letter back saying it was inconclusive from all of the information they received from the pulmonologist and recommended the CPAP, another CT scan, a full series of Pulmonary Function tests (I have only had spirometry done), and a blood gases test. All of this info was sent back to my GP and she received a copy of the letter as well. She ordered the CT scan and called me to tell me I have PF. She said she could not order the pulmonary function test. She asked me for a list of doctors approved by my insurance... and that doctor said he wouldn't take me because it was not his specialty of pulmonary hypertension. Go figure. He recommended another specialist, one that is not covered by my insurance. I contacted my insurance company and they said they would have someone review my case. That person called me two weeks ago last Thursday. I sent an email Thursday morning asking if there was additional information they needed and why did they not get back to me. Today I sent a list of clinics that may be able to help me and asked if they covered any of them... I listed the Jewish Medical Center in Denver as that would be my first preference. I have little or no confidence here in Salt Lake as I feel like I have been hung out to dry. I will not go down without a fight. The first chance to change covereage is July 1. I have been on everyone's case and do not trust the original pulmonologist as he put me on the 60 mg of prednisone without checking my stats to know I was borderline diabetic. He then left the country (went home to India) for a month and I was advised by his office to see my GP if I was having any problems.... that is tantamount to mal-practice in my book, but I am trying to be nice. These are the reasons I am looking outside of my state. This group has been a god-send because you are all wonderful founts of good information.... Thanks for sharing and caring!!Stef>> I was diagnosed with Ideopathic Interstitial Lung Disease in February of 2006 and the Pulmonary Specialist wanted to crack my chest and do exploratory surgery. I opted out and have been looking for options and places to go for a second opinion. My husband's company recently added a benefit that included a (no cost to us) second opinion option through Boston's Best Doctors. Upshot was that it was not an ACTIVE Interstitial Lung Disease, No-I should not let the Pulmonary Specialist do the exploratory surgery. To establish a good diagnosis, it was recommended that I see an academic pulmonary specialist and request a CPAP titration (never had a CPAP test though they put me on 2L of O2 at night when I came into the Dr.'s office with Shortness of Breath)., get a blood gas test, and a full batch of lung volume tests as well as another CT scan (the original was in January of 2006). My regular GP ordered the CT and called me in less than a week to tell me she was sorry I had Pulmonary Fibrosis and if I needed anything, to giver her a call! I haven't even finished the CPAP stuff and have not had any of the other tests run. The Best Doctors would not give me a referral to the University of Utah Pulmonary Rehabilitation program because there was not enough information to warrant the referral.... So that is the level of frustration I am at today. I have contacted our insurance company to see what they will cover and where... it has been 2 weeks since I talked to them and they are not answering my emails. > > I just had to vent. Sorry. If anyone has a comment, please feel free to add to this post.> > Stefani>

[Guest guest]

This is a lot of info...takes me some time to absorb it.

Can you look for another pulmodude

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

Re: Hi, I'm new.... got just tons of questions...

The only pulmonologist I have seen was the one that said the only other thing he could do was crack open my chest and do the biopsies. He has already done the biopsies going in through my nasal cavity and too 7 samples. That info was sent to Boston and the Best Doctors organization. The original pulmonologist dx'd ILD. Best Doctors sent me a letter back saying it was inconclusive from all of the information they received from the pulmonologist and recommended the CPAP, another CT scan, a full series of Pulmonary Function tests (I have only had spirometry done), and a blood gases test. All of this info was sent back to my GP and she received a copy of the letter as well. She ordered the CT scan and called me to tell me I have PF. She said she could not order the pulmonary function test. She asked me for a list of doctors approved by my insurance... and that doctor said he wouldn't take me because it was not his specialty of pulmonary hypertension. Go figure. He recommended another specialist, one that is not covered by my insurance. I contacted my insurance company and they said they would have someone review my case. That person called me two weeks ago last Thursday. I sent an email Thursday morning asking if there was additional information they needed and why did they not get back to me. Today I sent a list of clinics that may be able to help me and asked if they covered any of them... I listed the Jewish Medical Center in Denver as that would be my first preference. I have little or no confidence here in Salt Lake as I feel like I have been hung out to dry. I will not go down without a fight. The first chance to change covereage is July 1. I have been on everyone's case and do not trust the original pulmonologist as he put me on the 60 mg of prednisone without checking my stats to know I was borderline diabetic. He then left the country (went home to India) for a month and I was advised by his office to see my GP if I was having any problems.... that is tantamount to mal-practice in my book, but I am trying to be nice. These are the reasons I am looking outside of my state. This group has been a god-send because you are all wonderful founts of good information.... Thanks for sharing and caring!!Stef>> I was diagnosed with Ideopathic Interstitial Lung Disease in February of 2006 and the Pulmonary Specialist wanted to crack my chest and do exploratory surgery. I opted out and have been looking for options and places to go for a second opinion. My husband's company recently added a benefit that included a (no cost to us) second opinion option through Boston's Best Doctors. Upshot was that it was not an ACTIVE Interstitial Lung Disease, No-I should not let the Pulmonary Specialist do the exploratory surgery. To establish a good diagnosis, it was recommended that I see an academic pulmonary specialist and request a CPAP titration (never had a CPAP test though they put me on 2L of O2 at night when I came into the Dr.'s office with Shortness of Breath)., get a blood gas test, and a full batch of lung volume tests as well as another CT scan (the original was in January of 2006). My regular GP ordered the CT and called me in less than a week to tell me she was sorry I had Pulmonary Fibrosis and if I needed anything, to giver her a call! I haven't even finished the CPAP stuff and have not had any of the other tests run. The Best Doctors would not give me a referral to the University of Utah Pulmonary Rehabilitation program because there was not enough information to warrant the referral.... So that is the level of frustration I am at today. I have contacted our insurance company to see what they will cover and where... it has been 2 weeks since I talked to them and they are not answering my emails. > > I just had to vent. Sorry. If anyone has a comment, please feel free to add to this post.> > Stefani>

[Guest guest]

Whoops...didn't mean to 'send' this.... I'm doing another post to you. I'm trying to understand the info you sent me.

I'm pretty certain Bruce will help you. He's so knowledgeable...ask him your questions that are more technical....

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

Re: Hi, I'm new.... got just tons of questions...

The only pulmonologist I have seen was the one that said the only other thing he could do was crack open my chest and do the biopsies. He has already done the biopsies going in through my nasal cavity and too 7 samples. That info was sent to Boston and the Best Doctors organization. The original pulmonologist dx'd ILD. Best Doctors sent me a letter back saying it was inconclusive from all of the information they received from the pulmonologist and recommended the CPAP, another CT scan, a full series of Pulmonary Function tests (I have only had spirometry done), and a blood gases test. All of this info was sent back to my GP and she received a copy of the letter as well. She ordered the CT scan and called me to tell me I have PF. She said she could not order the pulmonary function test. She asked me for a list of doctors approved by my insurance... and that doctor said he wouldn't take me because it was not his specialty of pulmonary hypertension. Go figure. He recommended another specialist, one that is not covered by my insurance. I contacted my insurance company and they said they would have someone review my case. That person called me two weeks ago last Thursday. I sent an email Thursday morning asking if there was additional information they needed and why did they not get back to me. Today I sent a list of clinics that may be able to help me and asked if they covered any of them... I listed the Jewish Medical Center in Denver as that would be my first preference. I have little or no confidence here in Salt Lake as I feel like I have been hung out to dry. I will not go down without a fight. The first chance to change covereage is July 1. I have been on everyone's case and do not trust the original pulmonologist as he put me on the 60 mg of prednisone without checking my stats to know I was borderline diabetic. He then left the country (went home to India) for a month and I was advised by his office to see my GP if I was having any problems.... that is tantamount to mal-practice in my book, but I am trying to be nice. These are the reasons I am looking outside of my state. This group has been a god-send because you are all wonderful founts of good information.... Thanks for sharing and caring!!Stef>> I was diagnosed with Ideopathic Interstitial Lung Disease in February of 2006 and the Pulmonary Specialist wanted to crack my chest and do exploratory surgery. I opted out and have been looking for options and places to go for a second opinion. My husband's company recently added a benefit that included a (no cost to us) second opinion option through Boston's Best Doctors. Upshot was that it was not an ACTIVE Interstitial Lung Disease, No-I should not let the Pulmonary Specialist do the exploratory surgery. To establish a good diagnosis, it was recommended that I see an academic pulmonary specialist and request a CPAP titration (never had a CPAP test though they put me on 2L of O2 at night when I came into the Dr.'s office with Shortness of Breath)., get a blood gas test, and a full batch of lung volume tests as well as another CT scan (the original was in January of 2006). My regular GP ordered the CT and called me in less than a week to tell me she was sorry I had Pulmonary Fibrosis and if I needed anything, to giver her a call! I haven't even finished the CPAP stuff and have not had any of the other tests run. The Best Doctors would not give me a referral to the University of Utah Pulmonary Rehabilitation program because there was not enough information to warrant the referral.... So that is the level of frustration I am at today. I have contacted our insurance company to see what they will cover and where... it has been 2 weeks since I talked to them and they are not answering my emails. > > I just had to vent. Sorry. If anyone has a comment, please feel free to add to this post.> > Stefani>

[Guest guest]

Whoops...didn't mean to 'send' this.... I'm doing another post to you. I'm trying to understand the info you sent me.

I'm pretty certain Bruce will help you. He's so knowledgeable...ask him your questions that are more technical....

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

Re: Hi, I'm new.... got just tons of questions...

The only pulmonologist I have seen was the one that said the only other thing he could do was crack open my chest and do the biopsies. He has already done the biopsies going in through my nasal cavity and too 7 samples. That info was sent to Boston and the Best Doctors organization. The original pulmonologist dx'd ILD. Best Doctors sent me a letter back saying it was inconclusive from all of the information they received from the pulmonologist and recommended the CPAP, another CT scan, a full series of Pulmonary Function tests (I have only had spirometry done), and a blood gases test. All of this info was sent back to my GP and she received a copy of the letter as well. She ordered the CT scan and called me to tell me I have PF. She said she could not order the pulmonary function test. She asked me for a list of doctors approved by my insurance... and that doctor said he wouldn't take me because it was not his specialty of pulmonary hypertension. Go figure. He recommended another specialist, one that is not covered by my insurance. I contacted my insurance company and they said they would have someone review my case. That person called me two weeks ago last Thursday. I sent an email Thursday morning asking if there was additional information they needed and why did they not get back to me. Today I sent a list of clinics that may be able to help me and asked if they covered any of them... I listed the Jewish Medical Center in Denver as that would be my first preference. I have little or no confidence here in Salt Lake as I feel like I have been hung out to dry. I will not go down without a fight. The first chance to change covereage is July 1. I have been on everyone's case and do not trust the original pulmonologist as he put me on the 60 mg of prednisone without checking my stats to know I was borderline diabetic. He then left the country (went home to India) for a month and I was advised by his office to see my GP if I was having any problems.... that is tantamount to mal-practice in my book, but I am trying to be nice. These are the reasons I am looking outside of my state. This group has been a god-send because you are all wonderful founts of good information.... Thanks for sharing and caring!!Stef>> I was diagnosed with Ideopathic Interstitial Lung Disease in February of 2006 and the Pulmonary Specialist wanted to crack my chest and do exploratory surgery. I opted out and have been looking for options and places to go for a second opinion. My husband's company recently added a benefit that included a (no cost to us) second opinion option through Boston's Best Doctors. Upshot was that it was not an ACTIVE Interstitial Lung Disease, No-I should not let the Pulmonary Specialist do the exploratory surgery. To establish a good diagnosis, it was recommended that I see an academic pulmonary specialist and request a CPAP titration (never had a CPAP test though they put me on 2L of O2 at night when I came into the Dr.'s office with Shortness of Breath)., get a blood gas test, and a full batch of lung volume tests as well as another CT scan (the original was in January of 2006). My regular GP ordered the CT and called me in less than a week to tell me she was sorry I had Pulmonary Fibrosis and if I needed anything, to giver her a call! I haven't even finished the CPAP stuff and have not had any of the other tests run. The Best Doctors would not give me a referral to the University of Utah Pulmonary Rehabilitation program because there was not enough information to warrant the referral.... So that is the level of frustration I am at today. I have contacted our insurance company to see what they will cover and where... it has been 2 weeks since I talked to them and they are not answering my emails. > > I just had to vent. Sorry. If anyone has a comment, please feel free to add to this post.> > Stefani>

[Guest guest]

Stefani,

The type of biopsy you had is called a transbronchial biopsy. The pieces of lung tissue that are removed during during a transbronchial biopsy are very very tiny, the size of the head of a pin. These samples are so tiny that some doctors feel they are not adequate to be able to give an accurate diagnosis of pulmonary fibrosis. Some even feel that a high resolution ct scan gives more information than the transbronchial biopsy.

That said in your position I would not consent to any type of biopsy at all until you have had the basic tests that you've talked about, an HRCT, a full pulmonary function test etc. You need and deserve much much more information than you've been given thus far. I feel your frustration. Keep after them. You deserve better!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sunday, April 19, 2009 7:43:54 PMSubject: Re: Hi, I'm new.... got just tons of questions...

The only pulmonologist I have seen was the one that said the only other thing he could do was crack open my chest and do the biopsies. He has already done the biopsies going in through my nasal cavity and too 7 samples. That info was sent to Boston and the Best Doctors organization. The original pulmonologist dx'd ILD. Best Doctors sent me a letter back saying it was inconclusive from all of the information they received from the pulmonologist and recommended the CPAP, another CT scan, a full series of Pulmonary Function tests (I have only had spirometry done), and a blood gases test. All of this info was sent back to my GP and she received a copy of the letter as well. She ordered the CT scan and called me to tell me I have PF. She said she could not order the pulmonary function test. She asked me for a list of doctors approved by my insurance... and that doctor said he wouldn't take me because it was not his specialty of pulmonary hypertension. Go

figure. He recommended another specialist, one that is not covered by my insurance. I contacted my insurance company and they said they would have someone review my case. That person called me two weeks ago last Thursday. I sent an email Thursday morning asking if there was additional information they needed and why did they not get back to me. Today I sent a list of clinics that may be able to help me and asked if they covered any of them... I listed the Jewish Medical Center in Denver as that would be my first preference. I have little or no confidence here in Salt Lake as I feel like I have been hung out to dry. I will not go down without a fight. The first chance to change covereage is July 1. I have been on everyone's case and do not trust the original pulmonologist as he put me on the 60 mg of prednisone without checking my stats to know I was borderline diabetic. He then left the country (went home to India) for a month and I was advised by his

office to see my GP if I was having any problems.... that is tantamount to mal-practice in my book, but I am trying to be nice. These are the reasons I am looking outside of my state. This group has been a god-send because you are all wonderful founts of good information. ... Thanks for sharing and caring!!Stef>> I was diagnosed with Ideopathic Interstitial Lung Disease in February of 2006 and the Pulmonary Specialist wanted to crack my chest and do exploratory surgery. I opted out and have been looking for options and places to go for a second opinion. My husband's company recently added a benefit that included a (no cost to us) second opinion option through Boston's Best Doctors. Upshot was that it was not an

ACTIVE Interstitial Lung Disease, No-I should not let the Pulmonary Specialist do the exploratory surgery. To establish a good diagnosis, it was recommended that I see an academic pulmonary specialist and request a CPAP titration (never had a CPAP test though they put me on 2L of O2 at night when I came into the Dr.'s office with Shortness of Breath)., get a blood gas test, and a full batch of lung volume tests as well as another CT scan (the original was in January of 2006). My regular GP ordered the CT and called me in less than a week to tell me she was sorry I had Pulmonary Fibrosis and if I needed anything, to giver her a call! I haven't even finished the CPAP stuff and have not had any of the other tests run. The Best Doctors would not give me a referral to the University of Utah Pulmonary Rehabilitation program because there was not enough information to warrant the referral.... So that is the level of frustration I am at today. I have contacted

our insurance company to see what they will cover and where... it has been 2 weeks since I talked to them and they are not answering my emails. > > I just had to vent. Sorry. If anyone has a comment, please feel free to add to this post.> > Stefani>

[Guest guest]

Stefani,

The type of biopsy you had is called a transbronchial biopsy. The pieces of lung tissue that are removed during during a transbronchial biopsy are very very tiny, the size of the head of a pin. These samples are so tiny that some doctors feel they are not adequate to be able to give an accurate diagnosis of pulmonary fibrosis. Some even feel that a high resolution ct scan gives more information than the transbronchial biopsy.

That said in your position I would not consent to any type of biopsy at all until you have had the basic tests that you've talked about, an HRCT, a full pulmonary function test etc. You need and deserve much much more information than you've been given thus far. I feel your frustration. Keep after them. You deserve better!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sunday, April 19, 2009 7:43:54 PMSubject: Re: Hi, I'm new.... got just tons of questions...

The only pulmonologist I have seen was the one that said the only other thing he could do was crack open my chest and do the biopsies. He has already done the biopsies going in through my nasal cavity and too 7 samples. That info was sent to Boston and the Best Doctors organization. The original pulmonologist dx'd ILD. Best Doctors sent me a letter back saying it was inconclusive from all of the information they received from the pulmonologist and recommended the CPAP, another CT scan, a full series of Pulmonary Function tests (I have only had spirometry done), and a blood gases test. All of this info was sent back to my GP and she received a copy of the letter as well. She ordered the CT scan and called me to tell me I have PF. She said she could not order the pulmonary function test. She asked me for a list of doctors approved by my insurance... and that doctor said he wouldn't take me because it was not his specialty of pulmonary hypertension. Go

figure. He recommended another specialist, one that is not covered by my insurance. I contacted my insurance company and they said they would have someone review my case. That person called me two weeks ago last Thursday. I sent an email Thursday morning asking if there was additional information they needed and why did they not get back to me. Today I sent a list of clinics that may be able to help me and asked if they covered any of them... I listed the Jewish Medical Center in Denver as that would be my first preference. I have little or no confidence here in Salt Lake as I feel like I have been hung out to dry. I will not go down without a fight. The first chance to change covereage is July 1. I have been on everyone's case and do not trust the original pulmonologist as he put me on the 60 mg of prednisone without checking my stats to know I was borderline diabetic. He then left the country (went home to India) for a month and I was advised by his

office to see my GP if I was having any problems.... that is tantamount to mal-practice in my book, but I am trying to be nice. These are the reasons I am looking outside of my state. This group has been a god-send because you are all wonderful founts of good information. ... Thanks for sharing and caring!!Stef>> I was diagnosed with Ideopathic Interstitial Lung Disease in February of 2006 and the Pulmonary Specialist wanted to crack my chest and do exploratory surgery. I opted out and have been looking for options and places to go for a second opinion. My husband's company recently added a benefit that included a (no cost to us) second opinion option through Boston's Best Doctors. Upshot was that it was not an

ACTIVE Interstitial Lung Disease, No-I should not let the Pulmonary Specialist do the exploratory surgery. To establish a good diagnosis, it was recommended that I see an academic pulmonary specialist and request a CPAP titration (never had a CPAP test though they put me on 2L of O2 at night when I came into the Dr.'s office with Shortness of Breath)., get a blood gas test, and a full batch of lung volume tests as well as another CT scan (the original was in January of 2006). My regular GP ordered the CT and called me in less than a week to tell me she was sorry I had Pulmonary Fibrosis and if I needed anything, to giver her a call! I haven't even finished the CPAP stuff and have not had any of the other tests run. The Best Doctors would not give me a referral to the University of Utah Pulmonary Rehabilitation program because there was not enough information to warrant the referral.... So that is the level of frustration I am at today. I have contacted

our insurance company to see what they will cover and where... it has been 2 weeks since I talked to them and they are not answering my emails. > > I just had to vent. Sorry. If anyone has a comment, please feel free to add to this post.> > Stefani>

[Guest guest]

Same info I gave her MB. Hey Stef, you'll find everything you need with MB and Bruce and checking out the Files section.

Get a fresh start in the morning. Right now it's so overwhelming.

Start making lists. ;o)

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

Re: Hi, I'm new.... got just tons of questions...

The only pulmonologist I have seen was the one that said the only other thing he could do was crack open my chest and do the biopsies. He has already done the biopsies going in through my nasal cavity and too 7 samples. That info was sent to Boston and the Best Doctors organization. The original pulmonologist dx'd ILD. Best Doctors sent me a letter back saying it was inconclusive from all of the information they received from the pulmonologist and recommended the CPAP, another CT scan, a full series of Pulmonary Function tests (I have only had spirometry done), and a blood gases test. All of this info was sent back to my GP and she received a copy of the letter as well. She ordered the CT scan and called me to tell me I have PF. She said she could not order the pulmonary function test. She asked me for a list of doctors approved by my insurance... and that doctor said he wouldn't take me because it was not his specialty of pulmonary hypertension. Go figure. He recommended another specialist, one that is not covered by my insurance. I contacted my insurance company and they said they would have someone review my case. That person called me two weeks ago last Thursday. I sent an email Thursday morning asking if there was additional information they needed and why did they not get back to me. Today I sent a list of clinics that may be able to help me and asked if they covered any of them... I listed the Jewish Medical Center in Denver as that would be my first preference. I have little or no confidence here in Salt Lake as I feel like I have been hung out to dry. I will not go down without a fight. The first chance to change covereage is July 1. I have been on everyone's case and do not trust the original pulmonologist as he put me on the 60 mg of prednisone without checking my stats to know I was borderline diabetic. He then left the country (went home to India) for a month and I was advised by his office to see my GP if I was having any problems.... that is tantamount to mal-practice in my book, but I am trying to be nice. These are the reasons I am looking outside of my state. This group has been a god-send because you are all wonderful founts of good information. ... Thanks for sharing and caring!!Stef>> I was diagnosed with Ideopathic Interstitial Lung Disease in February of 2006 and the Pulmonary Specialist wanted to crack my chest and do exploratory surgery. I opted out and have been looking for options and places to go for a second opinion. My husband's company recently added a benefit that included a (no cost to us) second opinion option through Boston's Best Doctors. Upshot was that it was not an ACTIVE Interstitial Lung Disease, No-I should not let the Pulmonary Specialist do the exploratory surgery. To establish a good diagnosis, it was recommended that I see an academic pulmonary specialist and request a CPAP titration (never had a CPAP test though they put me on 2L of O2 at night when I came into the Dr.'s office with Shortness of Breath)., get a blood gas test, and a full batch of lung volume tests as well as another CT scan (the original was in January of 2006). My regular GP ordered the CT and called me in less than a week to tell me she was sorry I had Pulmonary Fibrosis and if I needed anything, to giver her a call! I haven't even finished the CPAP stuff and have not had any of the other tests run. The Best Doctors would not give me a referral to the University of Utah Pulmonary Rehabilitation program because there was not enough information to warrant the referral.... So that is the level of frustration I am at today. I have contacted our insurance company to see what they will cover and where... it has been 2 weeks since I talked to them and they are not answering my emails. > > I just had to vent. Sorry. If anyone has a comment, please feel free to add to this post.> > Stefani>

[Guest guest]

Beth & Bruce -

I originally requested a different pulmonologist that my husband had gone to.

This is within 15 days of first experiencing shortness of breath. That

pulmonologist could not see me for 6 months and sent me to the other one that

saw me a month and a half later. He immediately put me on 60 mg of prednisone

saying it would help with any inflammation I might have. He did spirometry and

had me come in for appointments every week for a month where he would again run

the spirometry and do a chest xray. Then he cam up with the broncholevage.

After that I went to his office and he gave me a list of things I DID NOT

HAVE... The findings from the biopsies showed there was no evidence of cancer,

fibrosis, sarcoidosis, COPD, BOOP, viral or bacterial infection, or

tuberculosis. He said there simply was some kind of Ideopathic Lung Disease. I

understand what he said but really dragged my feet at the suggestion of opening

me up. I asked for another pulmonary specialist and was told that no one had

any idea who should see me so I have been on this quest ever since. Then my

husband's company offered the Best Doctors and I felt at this point I have

nothing to lose. Best Doctors came back with specific tests that need to be

run. My GP said she could order the CT scan and CPAP test. Right after the CT

scan came back she called me and said " I am so sorry. You have Pulmonary

Fibrosis. " I was angry because she is not a specialist and I haven't had a lung

function test performed, no a blood gas test either. The CPAP had not been run

at that time either. I have been looking for another place to go and AETNA said

they would not cover the Mayo Clinic. My husband said he has a chance to change

carriers in July and said that my situation would not be considered a

pre-existing as we have been covered by the company's insurance all of this

time... the carrier is simply the option. I don't know. I am doing everything I

can think of short of just going to Denver and eating the cost myself ... by the

way what does all of this stuff cost (an arm and a leg and a lung or two LOL)?

I really do appreciate all of the help because up until the time I have

contacted you guys I just didn't have a clue where to go next. I really

appreciate all of the help. I did make it to the Pulmonary Fibrosis site and

got their handbook downloaded... scary data on prognosis. I understand the

gravity and have already versed my children on it. My husband is in denial

(thinks it may just be an allergy as that is his biggest problem). I want to

know for sure and how to live (and die) with it no matter what. That is why I

have been pushing to get into the University of Utah Pulmonary Rehabilitation

Program ($2500 for a 2 month course). I have been doing my homework, my

insurance company is just dragging their feet. I need a referral for the

rehab... GP doesn't want to give it and keeps asking me for a list of doctors to

go to. I called AETNA and they haven't gotten back. If I don't hear by this

next Thursday, their home office is getting one angry call. AND I won't quit

until I get some movement. I may end up calling the local TV personality who

specializes in making public news of health care/cost and other injustices.

I do have a plan. Just remind me once in awhile that I am my ship's captain.

Stef

> >

> > I was diagnosed with Ideopathic Interstitial Lung Disease in February of

2006 and the Pulmonary Specialist wanted to crack my chest and do exploratory

surgery. I opted out and have been looking for options and places to go for a

second opinion. My husband's company recently added a benefit that included a

(no cost to us) second opinion option through Boston's Best Doctors. Upshot was

that it was not an ACTIVE Interstitial Lung Disease, No-I should not let the

Pulmonary Specialist do the exploratory surgery. To establish a good diagnosis,

it was recommended that I see an academic pulmonary specialist and request a

CPAP titration (never had a CPAP test though they put me on 2L of O2 at night

when I came into the Dr.'s office with Shortness of Breath)., get a blood gas

test, and a full batch of lung volume tests as well as another CT scan (the

original was in January of 2006). My regular GP ordered the CT and called me in

less than a week to tell me she

> was sorry I had Pulmonary Fibrosis and if I needed anything, to giver her a

call! I haven't even finished the CPAP stuff and have not had any of the other

tests run. The Best Doctors would not give me a referral to the University of

Utah Pulmonary Rehabilitation program because there was not enough information

to warrant the referral.... So that is the level of frustration I am at today. I

have contacted our insurance company to see what they will cover and where... it

has been 2 weeks since I talked to them and they are not answering my emails.

> >

> > I just had to vent. Sorry. If anyone has a comment, please feel free to add

to this post.

> >

> > Stefani

> >

>

[Guest guest]

Beth & Bruce -

I originally requested a different pulmonologist that my husband had gone to.

This is within 15 days of first experiencing shortness of breath. That

pulmonologist could not see me for 6 months and sent me to the other one that

saw me a month and a half later. He immediately put me on 60 mg of prednisone

saying it would help with any inflammation I might have. He did spirometry and

had me come in for appointments every week for a month where he would again run

the spirometry and do a chest xray. Then he cam up with the broncholevage.

After that I went to his office and he gave me a list of things I DID NOT

HAVE... The findings from the biopsies showed there was no evidence of cancer,

fibrosis, sarcoidosis, COPD, BOOP, viral or bacterial infection, or

tuberculosis. He said there simply was some kind of Ideopathic Lung Disease. I

understand what he said but really dragged my feet at the suggestion of opening

me up. I asked for another pulmonary specialist and was told that no one had

any idea who should see me so I have been on this quest ever since. Then my

husband's company offered the Best Doctors and I felt at this point I have

nothing to lose. Best Doctors came back with specific tests that need to be

run. My GP said she could order the CT scan and CPAP test. Right after the CT

scan came back she called me and said " I am so sorry. You have Pulmonary

Fibrosis. " I was angry because she is not a specialist and I haven't had a lung

function test performed, no a blood gas test either. The CPAP had not been run

at that time either. I have been looking for another place to go and AETNA said

they would not cover the Mayo Clinic. My husband said he has a chance to change

carriers in July and said that my situation would not be considered a

pre-existing as we have been covered by the company's insurance all of this

time... the carrier is simply the option. I don't know. I am doing everything I

can think of short of just going to Denver and eating the cost myself ... by the

way what does all of this stuff cost (an arm and a leg and a lung or two LOL)?

I really do appreciate all of the help because up until the time I have

contacted you guys I just didn't have a clue where to go next. I really

appreciate all of the help. I did make it to the Pulmonary Fibrosis site and

got their handbook downloaded... scary data on prognosis. I understand the

gravity and have already versed my children on it. My husband is in denial

(thinks it may just be an allergy as that is his biggest problem). I want to

know for sure and how to live (and die) with it no matter what. That is why I

have been pushing to get into the University of Utah Pulmonary Rehabilitation

Program ($2500 for a 2 month course). I have been doing my homework, my

insurance company is just dragging their feet. I need a referral for the

rehab... GP doesn't want to give it and keeps asking me for a list of doctors to

go to. I called AETNA and they haven't gotten back. If I don't hear by this

next Thursday, their home office is getting one angry call. AND I won't quit

until I get some movement. I may end up calling the local TV personality who

specializes in making public news of health care/cost and other injustices.

I do have a plan. Just remind me once in awhile that I am my ship's captain.

Stef

> >

> > I was diagnosed with Ideopathic Interstitial Lung Disease in February of

2006 and the Pulmonary Specialist wanted to crack my chest and do exploratory

surgery. I opted out and have been looking for options and places to go for a

second opinion. My husband's company recently added a benefit that included a

(no cost to us) second opinion option through Boston's Best Doctors. Upshot was

that it was not an ACTIVE Interstitial Lung Disease, No-I should not let the

Pulmonary Specialist do the exploratory surgery. To establish a good diagnosis,

it was recommended that I see an academic pulmonary specialist and request a

CPAP titration (never had a CPAP test though they put me on 2L of O2 at night

when I came into the Dr.'s office with Shortness of Breath)., get a blood gas

test, and a full batch of lung volume tests as well as another CT scan (the

original was in January of 2006). My regular GP ordered the CT and called me in

less than a week to tell me she

> was sorry I had Pulmonary Fibrosis and if I needed anything, to giver her a

call! I haven't even finished the CPAP stuff and have not had any of the other

tests run. The Best Doctors would not give me a referral to the University of

Utah Pulmonary Rehabilitation program because there was not enough information

to warrant the referral.... So that is the level of frustration I am at today. I

have contacted our insurance company to see what they will cover and where... it

has been 2 weeks since I talked to them and they are not answering my emails.

> >

> > I just had to vent. Sorry. If anyone has a comment, please feel free to add

to this post.

> >

> > Stefani

> >

>

[Guest guest]

Let's focus then on specifics.

1-You must get to a pulmonologist specializing in Interstitial Lung

Diseases. Most have little experience with them.

2-You do need full PFT's and testing accompanied by lots of labs to find

out about other conditions such as autoimmune diseases. This will

include the facility you go to probably wanting to run their own CT's.

3-You need to delay any decision on a biopsy until after 1 and 2 are

completed.

4-For the July open enrollment your husband has, you need to look very

carefully at the choices.

5-You need copies of all your medical records and reports and must

become your own advocate.

6-You should ultimately have pulmonary rehab but diagnosis is first

emphasis.

There should be one of the hospitals with expertise on your insurance.

From Utah, National Jewish in Denver and University of California in San

Francisco are two possibilities. Now is the time to take all the

frustration, anger, confusion and other emotions and channel them toward

finding answers. You will be amazed that once you get information from

those with expertise, you'll feel so much more in control.

> > >

> > > I was diagnosed with Ideopathic Interstitial Lung Disease in

February of 2006 and the Pulmonary Specialist wanted to crack my chest

and do exploratory surgery. I opted out and have been looking for

options and places to go for a second opinion. My husband's company

recently added a benefit that included a (no cost to us) second opinion

option through Boston's Best Doctors. Upshot was that it was not an

ACTIVE Interstitial Lung Disease, No-I should not let the Pulmonary

Specialist do the exploratory surgery. To establish a good diagnosis, it

was recommended that I see an academic pulmonary specialist and request

a CPAP titration (never had a CPAP test though they put me on 2L of O2

at night when I came into the Dr.'s office with Shortness of Breath).,

get a blood gas test, and a full batch of lung volume tests as well as

another CT scan (the original was in January of 2006). My regular GP

ordered the CT and called me in less than a week to tell me she

> > was sorry I had Pulmonary Fibrosis and if I needed anything, to

giver her a call! I haven't even finished the CPAP stuff and have not

had any of the other tests run. The Best Doctors would not give me a

referral to the University of Utah Pulmonary Rehabilitation program

because there was not enough information to warrant the referral.... So

that is the level of frustration I am at today. I have contacted our

insurance company to see what they will cover and where... it has been 2

weeks since I talked to them and they are not answering my emails.

> > >

> > > I just had to vent. Sorry. If anyone has a comment, please feel

free to add to this post.

> > >

> > > Stefani

> > >

> >

>

[Guest guest]

Let's focus then on specifics.

1-You must get to a pulmonologist specializing in Interstitial Lung

Diseases. Most have little experience with them.

2-You do need full PFT's and testing accompanied by lots of labs to find

out about other conditions such as autoimmune diseases. This will

include the facility you go to probably wanting to run their own CT's.

3-You need to delay any decision on a biopsy until after 1 and 2 are

completed.

4-For the July open enrollment your husband has, you need to look very

carefully at the choices.

5-You need copies of all your medical records and reports and must

become your own advocate.

6-You should ultimately have pulmonary rehab but diagnosis is first

emphasis.

There should be one of the hospitals with expertise on your insurance.

From Utah, National Jewish in Denver and University of California in San

Francisco are two possibilities. Now is the time to take all the

frustration, anger, confusion and other emotions and channel them toward

finding answers. You will be amazed that once you get information from

those with expertise, you'll feel so much more in control.

> > >

> > > I was diagnosed with Ideopathic Interstitial Lung Disease in

February of 2006 and the Pulmonary Specialist wanted to crack my chest

and do exploratory surgery. I opted out and have been looking for

options and places to go for a second opinion. My husband's company

recently added a benefit that included a (no cost to us) second opinion

option through Boston's Best Doctors. Upshot was that it was not an

ACTIVE Interstitial Lung Disease, No-I should not let the Pulmonary

Specialist do the exploratory surgery. To establish a good diagnosis, it

was recommended that I see an academic pulmonary specialist and request

a CPAP titration (never had a CPAP test though they put me on 2L of O2

at night when I came into the Dr.'s office with Shortness of Breath).,

get a blood gas test, and a full batch of lung volume tests as well as

another CT scan (the original was in January of 2006). My regular GP

ordered the CT and called me in less than a week to tell me she

> > was sorry I had Pulmonary Fibrosis and if I needed anything, to

giver her a call! I haven't even finished the CPAP stuff and have not

had any of the other tests run. The Best Doctors would not give me a

referral to the University of Utah Pulmonary Rehabilitation program

because there was not enough information to warrant the referral.... So

that is the level of frustration I am at today. I have contacted our

insurance company to see what they will cover and where... it has been 2

weeks since I talked to them and they are not answering my emails.

> > >

> > > I just had to vent. Sorry. If anyone has a comment, please feel

free to add to this post.

> > >

> > > Stefani

> > >

> >

>

[Guest guest]

Bruce -

Thanks for the road map.

I was so angry when my GP took the interpretation of the new CT scan that she

ordered and determined that I had PF. I went to her with the list of

requirements from Best Doctors and she was impressed. She ordered the CT and

sent me out for the CPAP titration that they recommended. We were supposedly

going to get a doctor associated with the University of Utah that would help me

with the pulmonary stuff. Then I got the call from her and it is like

everything else has been dropped! I am working on getting approval from AETNA

for one of the facilities listed on the IPF.org site. I tried to get into the

University of Utah and that was a bust. If I have to I will find another pulmo

guy just to get the PFT and blood gases test required.

I just went through a full battery of blood tests that include;

Albumin/Creatinine

CV Risk

hsCRP for CVrisk

Comprehensive Metabolic Panel

Lipid Panel

Thyroid Stim Hormone

CBC without Diff

I have been having these test since 2006 every 6 months just trying to get

everything back to 'normal' after the prednisone. This last battery everything

was at pre-shortness of breath levels and within normal range except for the

liver AST and ALT levels. They were first elevated after taking prednisone.

I have had an abdominal ultrasound but they were unable to come back with

anything concrete as I am overweight and 'have a fatty liver'. I have had a

stress echocardiogram and the last chest CT was WO Cnt (is that without

contrast?). I previously had the iodine which I am figuring is the contrast.

I have been taking list to my doctors and since being prescribed the prednisone

by a doctor that failed to look at my previous blood tests that showed a

borderline diabetic chemistry, I now carry a notebook with a summation of

previous doctor visits, current vitamin and medications being taken and a list

of questions and desired plan of action as the doctors seem to be too busy to do

any homework. I bring it all with me and have since April 2006. That is how I

know what has been ruled out by a pulmonologist, who I have seen and when as

well as a running history of all meds since December 2005.

Yes. I want a solid diagnosis. I am not sure I have received one yet. I am

going to ping AETNA again this week. I am going in to see my GP again next week

and see if we can't at least find a pulmonologist I can see to get the PFTs and

blood gases test. I am still waiting to hear back from the CPAP doctor. My

next appointment with her is her first available on June 30. That seems to be

my biggest problem. First available appointments (other than my GP) are 2 plus

months out.

My husband has not received the info for the upcoming enrollment. The plan

options will not be available until sometime in May. In the meantime I am

continuing pressure on AETNA. I feel more in control since the info I received

from Best Doctors, but I agree with your assessment. They said they could

continue advising me, but I would have to re-initiate my case with them each

time. Sounds like a chance to get more monies from the insurance companies paid

for by large corporations.

Thanks again,

Stef

> > > >

> > > > I was diagnosed with Ideopathic Interstitial Lung Disease in

> February of 2006 and the Pulmonary Specialist wanted to crack my chest

> and do exploratory surgery. I opted out and have been looking for

> options and places to go for a second opinion. My husband's company

> recently added a benefit that included a (no cost to us) second opinion

> option through Boston's Best Doctors. Upshot was that it was not an

> ACTIVE Interstitial Lung Disease, No-I should not let the Pulmonary

> Specialist do the exploratory surgery. To establish a good diagnosis, it

> was recommended that I see an academic pulmonary specialist and request

> a CPAP titration (never had a CPAP test though they put me on 2L of O2

> at night when I came into the Dr.'s office with Shortness of Breath).,

> get a blood gas test, and a full batch of lung volume tests as well as

> another CT scan (the original was in January of 2006). My regular GP

> ordered the CT and called me in less than a week to tell me she

> > > was sorry I had Pulmonary Fibrosis and if I needed anything, to

> giver her a call! I haven't even finished the CPAP stuff and have not

> had any of the other tests run. The Best Doctors would not give me a

> referral to the University of Utah Pulmonary Rehabilitation program

> because there was not enough information to warrant the referral.... So

> that is the level of frustration I am at today. I have contacted our

> insurance company to see what they will cover and where... it has been 2

> weeks since I talked to them and they are not answering my emails.

> > > >

> > > > I just had to vent. Sorry. If anyone has a comment, please feel

> free to add to this post.

> > > >

> > > > Stefani

> > > >

> > >

> >

>

[Guest guest]

Hi Stef... I'm glad to see you post to MB/Bruce/board what we've been posting to each other privately. Most of this is so over my head but my eye caught something as I re-read

this post....

>>>"Right after the CT scan came back she called me and said "I am so sorry. You have Pulmonary Fibrosis."

(I was dx with less testing)

and with the other tests the dr had already ordered for you, I get a clearer understanding of your dx.

First pulmodude not available.

Second pulmodude did testing/bronc and dx of ILD and Rx prednisone.

BDrs required more testing...

GP ordered CTscan (and cpap...but that's a breathing test not always done w/PF.)

GP called you w/dx of PF: the results of ALL testing done...

As I said, I was dx with less testing. I and many of us here found our dx online.

Surely the second pulmodude who ordered the testing that was a part of the final dx has records that will be available to the first pulmodude and he will now order pfts and a 6 min walk based on testing!

I still have not had a blood gas.

(Additional testing is frequently done depending on each of our personal dx and test results.)

I've found we do not all have the same testing done all the time.

Dr who Rx prednisone (now out of the country) and this Rx angered you. He gave you a lot of info also....

Isn't the first dr who had been unavailable back when, now be available again and HE can now order any additional testing based on second Dr and GP findings?

We've been talking about your frustration and anger and so on and I think I'm understanding now.

Apparently the first dr who was unavailable was ok w/your ins or you would not have called him.

I admit I'm confused along with you but it's clearer now if I figured it out right.

It's a real hassle to figure out ins/best premium/copays/Rx and on and on. Start shopping now online.

There is rehab available for less $$.

But only if it's part of your ins plan. A firm dx will help with any medical need.

It seems like there should be an answer to be shaken out between the first two pulmodudes and GP. Maybe not the FINAL answer but at least more understanding...

About here my brain gets tired....

The board will help....there are many of us where I'm only one.

Keep on keepin' on . You'll get through it a little at a time.

As I said to you before, why are YOU trying to be nice? You are entitled to answers.

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

Re: Hi, I'm new.... got just tons of questions...

Beth & Bruce -I originally requested a different pulmonologist that my husband had gone to. This is within 15 days of first experiencing shortness of breath. That pulmonologist could not see me for 6 months and sent me to the other one that saw me a month and a half later. He immediately put me on 60 mg of prednisone saying it would help with any inflammation I might have. He did spirometry and had me come in for appointments every week for a month where he would again run the spirometry and do a chest xray. Then he cam up with the broncholevage. After that I went to his office and he gave me a list of things I DID NOT HAVE... The findings from the biopsies showed there was no evidence of cancer, fibrosis, sarcoidosis, COPD, BOOP, viral or bacterial infection, or tuberculosis. He said there simply was some kind of Ideopathic Lung Disease. I understand what he said but really dragged my feet at the suggestion of opening me up. I asked for another pulmonary specialist and was told that no one had any idea who should see me so I have been on this quest ever since. Then my husband's company offered the Best Doctors and I felt at this point I have nothing to lose. Best Doctors came back with specific tests that need to be run. My GP said she could order the CT scan and CPAP test. Right after the CT scan came back she called me and said "I am so sorry. You have Pulmonary Fibrosis." I was angry because she is not a specialist and I haven't had a lung function test performed, no a blood gas test either. The CPAP had not been run at that time either. I have been looking for another place to go and AETNA said they would not cover the Mayo Clinic. My husband said he has a chance to change carriers in July and said that my situation would not be considered a pre-existing as we have been covered by the company's insurance all of this time... the carrier is simply the option. I don't know. I am doing everything I can think of short of just going to Denver and eating the cost myself ... by the way what does all of this stuff cost (an arm and a leg and a lung or two LOL)?I really do appreciate all of the help because up until the time I have contacted you guys I just didn't have a clue where to go next. I really appreciate all of the help. I did make it to the Pulmonary Fibrosis site and got their handbook downloaded... scary data on prognosis. I understand the gravity and have already versed my children on it. My husband is in denial (thinks it may just be an allergy as that is his biggest problem). I want to know for sure and how to live (and die) with it no matter what. That is why I have been pushing to get into the University of Utah Pulmonary Rehabilitation Program ($2500 for a 2 month course). I have been doing my homework, my insurance company is just dragging their feet. I need a referral for the rehab... GP doesn't want to give it and keeps asking me for a list of doctors to go to. I called AETNA and they haven't gotten back. If I don't hear by this next Thursday, their home office is getting one angry call. AND I won't quit until I get some movement. I may end up calling the local TV personality who specializes in making public news of health care/cost and other injustices.I do have a plan. Just remind me once in awhile that I am my ship's captain.Stef> >> > I was diagnosed with Ideopathic Interstitial Lung Disease in February of 2006 and the Pulmonary Specialist wanted to crack my chest and do exploratory surgery. I opted out and have been looking for options and places to go for a second opinion. My husband's company recently added a benefit that included a (no cost to us) second opinion option through Boston's Best Doctors. Upshot was that it was not an ACTIVE Interstitial Lung Disease, No-I should not let the Pulmonary Specialist do the exploratory surgery. To establish a good diagnosis, it was recommended that I see an academic pulmonary specialist and request a CPAP titration (never had a CPAP test though they put me on 2L of O2 at night when I came into the Dr.'s office with Shortness of Breath)., get a blood gas test, and a full batch of lung volume tests as well as another CT scan (the original was in January of 2006). My regular GP ordered the CT and called me in less than a week to tell me she> was sorry I had Pulmonary Fibrosis and if I needed anything, to giver her a call! I haven't even finished the CPAP stuff and have not had any of the other tests run. The Best Doctors would not give me a referral to the University of Utah Pulmonary Rehabilitation program because there was not enough information to warrant the referral.... So that is the level of frustration I am at today. I have contacted our insurance company to see what they will cover and where... it has been 2 weeks since I talked to them and they are not answering my emails. > > > > I just had to vent. Sorry. If anyone has a comment, please feel free to add to this post.> > > > Stefani> >>

[Guest guest]

Sher -

Only one pulmodude. The first was unavailable for 6 months. The one I did get

is the one who left the country. My GP at the time picked up most of the slack

when she caught me depressed, lithargic and feeling absolutely lousy. When my

one and only pulmodude came back to the US he did the biopsies with the tube

down my nose... not a fun procedure by the way. He told me what I did not have

and then said the only recourse in his book was to crack open my chest for

larger biopsies. I told him I wasn't ready for that and he asked me what I

would suggest!! That is when I left him. I need a doctor who knows what he is

doing and does all of the testing needed without being too invasive. That is

why I got the Best Doctors second opinion and the roadmap of what to do next

from Bruce. I got a response FINALLY from my insurance company and it looks

like I may go to the Jewish Medical Center in Denver or to UCLA... awaiting

final call and then I am off with my notebook and medical records CD in hand. I

hope this is a more concise rendition... you were pretty close.

Stefani

> > >

> > > I was diagnosed with Ideopathic Interstitial Lung Disease in February of

2006 and the Pulmonary Specialist wanted to crack my chest and do exploratory

surgery. I opted out and have been looking for options and places to go for a

second opinion. My husband's company recently added a benefit that included a

(no cost to us) second opinion option through Boston's Best Doctors. Upshot was

that it was not an ACTIVE Interstitial Lung Disease, No-I should not let the

Pulmonary Specialist do the exploratory surgery. To establish a good diagnosis,

it was recommended that I see an academic pulmonary specialist and request a

CPAP titration (never had a CPAP test though they put me on 2L of O2 at night

when I came into the Dr.'s office with Shortness of Breath)., get a blood gas

test, and a full batch of lung volume tests as well as another CT scan (the

original was in January of 2006). My regular GP ordered the CT and called me in

less than a week to tell me she

> > was sorry I had Pulmonary Fibrosis and if I needed anything, to giver her

a call! I haven't even finished the CPAP stuff and have not had any of the other

tests run. The Best Doctors would not give me a referral to the University of

Utah Pulmonary Rehabilitation program because there was not enough information

to warrant the referral.... So that is the level of frustration I am at today. I

have contacted our insurance company to see what they will cover and where... it

has been 2 weeks since I talked to them and they are not answering my emails.

> > >

> > > I just had to vent. Sorry. If anyone has a comment, please feel free to

add to this post.

> > >

> > > Stefani

> > >

> >

>

[Guest guest]

Stef... I know it's such a puzzle to put together...

Take care, I'll be watching for your updates.

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

Re: Hi, I'm new.... got just tons of questions...

Sher -Only one pulmodude. The first was unavailable for 6 months. The one I did get is the one who left the country. My GP at the time picked up most of the slack when she caught me depressed, lithargic and feeling absolutely lousy. When my one and only pulmodude came back to the US he did the biopsies with the tube down my nose... not a fun procedure by the way. He told me what I did not have and then said the only recourse in his book was to crack open my chest for larger biopsies. I told him I wasn't ready for that and he asked me what I would suggest!! That is when I left him. I need a doctor who knows what he is doing and does all of the testing needed without being too invasive. That is why I got the Best Doctors second opinion and the roadmap of what to do next from Bruce. I got a response FINALLY from my insurance company and it looks like I may go to the Jewish Medical Center in Denver or to UCLA... awaiting final call and then I am off with my notebook and medical records CD in hand. I hope this is a more concise rendition... you were pretty close.Stefani> > >> > > I was diagnosed with Ideopathic Interstitial Lung Disease in February of 2006 and the Pulmonary Specialist wanted to crack my chest and do exploratory surgery. I opted out and have been looking for options and places to go for a second opinion. My husband's company recently added a benefit that included a (no cost to us) second opinion option through Boston's Best Doctors. Upshot was that it was not an ACTIVE Interstitial Lung Disease, No-I should not let the Pulmonary Specialist do the exploratory surgery. To establish a good diagnosis, it was recommended that I see an academic pulmonary specialist and request a CPAP titration (never had a CPAP test though they put me on 2L of O2 at night when I came into the Dr.'s office with Shortness of Breath)., get a blood gas test, and a full batch of lung volume tests as well as another CT scan (the original was in January of 2006). My regular GP ordered the CT and called me in less than a week to tell me she> > was sorry I had Pulmonary Fibrosis and if I needed anything, to giver her a call! I haven't even finished the CPAP stuff and have not had any of the other tests run. The Best Doctors would not give me a referral to the University of Utah Pulmonary Rehabilitation program because there was not enough information to warrant the referral.... So that is the level of frustration I am at today. I have contacted our insurance company to see what they will cover and where... it has been 2 weeks since I talked to them and they are not answering my emails. > > > > > > I just had to vent. Sorry. If anyone has a comment, please feel free to add to this post.> > > > > > Stefani> > >> >>