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

[Guest guest]

Stefani,

Just one thing I wanted to point out. The bloodwork that you've had done is mostly the typical routine bloodwork that many of us above 45 or 50 has done on a semi-regular basis. It's not anything that's going to shed light on your lung disease, it's type, or it's origin. This is where going to a specialist in interstitial lung disease is enlightening. You will have loads of bloodwork done that you've never had before. Tests for hypersensitivity pneumonitis, antibody profiles for various auto-immune diseases etc. etc.

I'm so happy that you are making progress towards being seen somewhere like National Jewish. Don't give up. You are the captain of the ship!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Monday, April 20, 2009 11:44:34 AMSubject: Re: Hi, I'm new.... got just tons of questions...

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/CreatinineCV RiskhsCRP for CVriskComprehensive Metabolic PanelLipid

PanelThyroid Stim HormoneCBC without DiffI 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]

Stefani,

Just one thing I wanted to point out. The bloodwork that you've had done is mostly the typical routine bloodwork that many of us above 45 or 50 has done on a semi-regular basis. It's not anything that's going to shed light on your lung disease, it's type, or it's origin. This is where going to a specialist in interstitial lung disease is enlightening. You will have loads of bloodwork done that you've never had before. Tests for hypersensitivity pneumonitis, antibody profiles for various auto-immune diseases etc. etc.

I'm so happy that you are making progress towards being seen somewhere like National Jewish. Don't give up. You are the captain of the ship!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Monday, April 20, 2009 11:44:34 AMSubject: Re: Hi, I'm new.... got just tons of questions...

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/CreatinineCV RiskhsCRP for CVriskComprehensive Metabolic PanelLipid

PanelThyroid Stim HormoneCBC without DiffI 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]

Beth

My 'routine' blood test were all out of whack. Getting those back in line can't

have hurt. I also went online to my medical site with my GP and read over the

radiologists report of the last HRCT scan. It read

Impressions: Chronic interstitial lung disease with findings

suggesting NSIP with a predominantly fibrous component.

Differential diagnosis would include end-stage hypersensitivity

pneumonitis, collagen vascular diseases or other causes of

interstitial fibrosis. Further clinical correlation is requested.

Carrasco, M.D.

Radiologist

This information is what my GP based her phone call to me that started out " I'm

sorry. You have Pulmonary Fibrosis " . This is exactly why I want to go out of

state because I want someone who is WELL versed. Aetna sounds like they will

pay for the Jewish Medical or UCLA medical centers, awaiting a go ahead. I have

all of the info on CD to take with me wherever I go and can access all of my

records on heart and lungs via a computer wherever I go as well. I am ready, it

is the age old " hurry up and wait " stuff I have to deal with. Yeah, you might

say I am a little anxious.

Thanks for 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

My 'routine' blood test were all out of whack. Getting those back in line can't

have hurt. I also went online to my medical site with my GP and read over the

radiologists report of the last HRCT scan. It read

Impressions: Chronic interstitial lung disease with findings

suggesting NSIP with a predominantly fibrous component.

Differential diagnosis would include end-stage hypersensitivity

pneumonitis, collagen vascular diseases or other causes of

interstitial fibrosis. Further clinical correlation is requested.

Carrasco, M.D.

Radiologist

This information is what my GP based her phone call to me that started out " I'm

sorry. You have Pulmonary Fibrosis " . This is exactly why I want to go out of

state because I want someone who is WELL versed. Aetna sounds like they will

pay for the Jewish Medical or UCLA medical centers, awaiting a go ahead. I have

all of the info on CD to take with me wherever I go and can access all of my

records on heart and lungs via a computer wherever I go as well. I am ready, it

is the age old " hurry up and wait " stuff I have to deal with. Yeah, you might

say I am a little anxious.

Thanks for 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]

Stef

There are some huge details there which merit being reviewed by experts

in interstitial lung diseases. Most significantly perhaps is the

indication you may have fibrotic NSIP. Others will determine how certain

or uncertain they feel about that diagnosis. Often that is also

associated with an autoimmune disease. But the main thing is that the

prognosis with NSIP is somewhat better than with UIP.

Then we get to the hypersensitivity pneumonitis. That quickly brings up

the question of what you've been exposed to.

The good news (and I know right now nothing seems like good news) is

that nothing was mentioned of honeycombing.

Now, you talk about your lung and heart history. I can assure you that

if you get to Jewish, they'll go into far more of your history than you

can imagine including jobs, hobbies, and all things you might have been

exposed to. In addition, things other than lungs and hearts might give

clues. They'll want to know about all your body and conditions and

history. It's a very very complicated puzzle and thats why there are so

few facilities in the country with the expertise of even making a good

educated guess. They will repeat their own CT's but they will definitely

want to look at the history, especially the before prednisone and after

prednisone.

The sad reality is that the radiologist pointed out some good clues, but

you haven't seen the doctors capable of following them yet. I know that

once you do, you'll feel so much more in control of your destiny and

life. It doesn't mean there's a cure out there, but you'll be amazed at

what the knowledge will do for you.

> > > > > >

> > > > > > 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

There are some huge details there which merit being reviewed by experts

in interstitial lung diseases. Most significantly perhaps is the

indication you may have fibrotic NSIP. Others will determine how certain

or uncertain they feel about that diagnosis. Often that is also

associated with an autoimmune disease. But the main thing is that the

prognosis with NSIP is somewhat better than with UIP.

Then we get to the hypersensitivity pneumonitis. That quickly brings up

the question of what you've been exposed to.

The good news (and I know right now nothing seems like good news) is

that nothing was mentioned of honeycombing.

Now, you talk about your lung and heart history. I can assure you that

if you get to Jewish, they'll go into far more of your history than you

can imagine including jobs, hobbies, and all things you might have been

exposed to. In addition, things other than lungs and hearts might give

clues. They'll want to know about all your body and conditions and

history. It's a very very complicated puzzle and thats why there are so

few facilities in the country with the expertise of even making a good

educated guess. They will repeat their own CT's but they will definitely

want to look at the history, especially the before prednisone and after

prednisone.

The sad reality is that the radiologist pointed out some good clues, but

you haven't seen the doctors capable of following them yet. I know that

once you do, you'll feel so much more in control of your destiny and

life. It doesn't mean there's a cure out there, but you'll be amazed at

what the knowledge will do for you.

> > > > > >

> > > > > > 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 -

Actually, you made me feel better about your comments. I have access here in

Utah to all of my blood work (so far) and radiologist's reports and there is no

mentioning of honeycombing. I am ready for the full battery... personally I

think my problem may be due more to the total knee replacement. I have a slight

sensitivity to metals and mentioned it to the doctor doing the replacement. The

anesthesiologist was the only one that tipped me off the day of surgery when he

was asking me of known allergies and I mentioned the sensitivity to metals. He

asked me if the doctor knew about it and I told him yes... Then 20 days after

the surgery, I wake up with marked shortness of breath. I thought it might be

because I finished off my cumidin or that some kind of anti-rejection drug may

have worn off. I had a violent reaction to the percoset they gave me in the

hospital. I told them I did not need pain meds as I have a high tolerance to

pain. I was up and walking the day of surgery. I wish I could have taped the

whole surgery so I could know what went on.

I am ready for whatever. The Mayo Clinic would be nice. I am originally from

MN and have family back there. My husband would prefer I go down to Arizona,

but I think he just wants an excuse to go someplace warmer in January and

February (LOL).

Just waiting for confirmation from the insurance company. Have downloaded the

pulmonary physiology request form for National Jewish Hospital in Denver. I am

hoping that my GP can do the referral and test requests. She has a copy of the

letter from Best Doctors that calls for the complete PFT, gas exchange tests and

pulmonary exercise tests. That is the plan I have requested with my doctor and

we will see what they (Jewish clinic or UCLA) come up with.

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]

Bruce -

Actually, you made me feel better about your comments. I have access here in

Utah to all of my blood work (so far) and radiologist's reports and there is no

mentioning of honeycombing. I am ready for the full battery... personally I

think my problem may be due more to the total knee replacement. I have a slight

sensitivity to metals and mentioned it to the doctor doing the replacement. The

anesthesiologist was the only one that tipped me off the day of surgery when he

was asking me of known allergies and I mentioned the sensitivity to metals. He

asked me if the doctor knew about it and I told him yes... Then 20 days after

the surgery, I wake up with marked shortness of breath. I thought it might be

because I finished off my cumidin or that some kind of anti-rejection drug may

have worn off. I had a violent reaction to the percoset they gave me in the

hospital. I told them I did not need pain meds as I have a high tolerance to

pain. I was up and walking the day of surgery. I wish I could have taped the

whole surgery so I could know what went on.

I am ready for whatever. The Mayo Clinic would be nice. I am originally from

MN and have family back there. My husband would prefer I go down to Arizona,

but I think he just wants an excuse to go someplace warmer in January and

February (LOL).

Just waiting for confirmation from the insurance company. Have downloaded the

pulmonary physiology request form for National Jewish Hospital in Denver. I am

hoping that my GP can do the referral and test requests. She has a copy of the

letter from Best Doctors that calls for the complete PFT, gas exchange tests and

pulmonary exercise tests. That is the plan I have requested with my doctor and

we will see what they (Jewish clinic or UCLA) come up with.

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]

Bruce -

Actually, you made me feel better about your comments. I have access here in

Utah to all of my blood work (so far) and radiologist's reports and there is no

mentioning of honeycombing. I am ready for the full battery... personally I

think my problem may be due more to the total knee replacement. I have a slight

sensitivity to metals and mentioned it to the doctor doing the replacement. The

anesthesiologist was the only one that tipped me off the day of surgery when he

was asking me of known allergies and I mentioned the sensitivity to metals. He

asked me if the doctor knew about it and I told him yes... Then 20 days after

the surgery, I wake up with marked shortness of breath. I thought it might be

because I finished off my cumidin or that some kind of anti-rejection drug may

have worn off. I had a violent reaction to the percoset they gave me in the

hospital. I told them I did not need pain meds as I have a high tolerance to

pain. I was up and walking the day of surgery. I wish I could have taped the

whole surgery so I could know what went on.

I am ready for whatever. The Mayo Clinic would be nice. I am originally from

MN and have family back there. My husband would prefer I go down to Arizona,

but I think he just wants an excuse to go someplace warmer in January and

February (LOL).

Just waiting for confirmation from the insurance company. Have downloaded the

pulmonary physiology request form for National Jewish Hospital in Denver. I am

hoping that my GP can do the referral and test requests. She has a copy of the

letter from Best Doctors that calls for the complete PFT, gas exchange tests and

pulmonary exercise tests. That is the plan I have requested with my doctor and

we will see what they (Jewish clinic or UCLA) come up with.

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

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>