Re: Lung biopsy questions

[Guest guest]

Jim ... I want to acknowledge your post...

You don't say what the tests you have had show.

There are many here who have had lung bios and many who do not. I am an older member (70) and age figured in to my decision against a lung bio. I was dx (diagnosed) 3-2006 and remained fairly stable for a couple of years. The past few months I have had some progression of my IPF.

For me, the way it is is the way it is and "knowing what kind" still leaves very limited treatment. Prednisone is the most common and I choose not to take that because of the side effects...one being extreme weight gain!

Others will respond to you. Get all the information before you have a bio, Jim. It is not unusual to go through that very invasive surgery and still not know.

Lots of information here on the board for you.

Welcome.

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

Lung biopsy questions

I am new to the group so a little background:

I am a 61 year-old male living in Midland Texas. I was diagnosed with IPF November 30th, 2007. I had been seeing a pulmonary doctor in Midland (there are two) in whom, for reasons I won’t go into, I have lost confidence. I went to and White Clinic in Temple Texas and saw a Dr. Dekeratry. The doctor told me he took an aggressive approach to treating IPF and recommended a lung biopsy so we would better know how to treat my condition. I have had two CT scans, one PET scan, and 3 PFT’s. I would like to hear from anyone out there that has had a lung biopsy (Thoracoscopy) and were there any actual benefits to having this done. Also would like to know the approximate cost of this procedure. – Thanks – Jim

[Guest guest]

Jim

First, I would want to know what he means by "aggressive approach". Second, I would say that the approach to be taken is your choice based on his advice and other education.

At this point the key questions are:

1-What has he concluded from the tests done and how sure is he.

2-What does he hope to learn from the biopsy and how does he suggest you use that information.

Sometimes, biopsies are necessary to determine if you have PF. Most of the time they are not. Most of the time they are used to find out or to verify what form of Interstitial Lung Disease you have. That information then may be used to determine treatment or to qualify you for clinical trials.

You need to not only think about the biopsy decision but the treatment decision. I had my biopsy to determine my form of ILD as I had decided in advance that if I had UIP I would not try prednisone and if I had NSIP or other variations I would use imuran and prednisone.

Now, some are going to try Imuran and Prednisone regardless and others are not going to try them under any circumstances. For them, my reasoning would not seem valid.

I am glad I had my VATS. However, the doctors in no way fully advised me of it in advance. It is a very invasive procedure. I had it a year ago and still have pain around the incisions and as a result of it. However, I had no serious problems. Some never have any pain or problem. Some have serious problems after.

As to the cost:

The amount billed by the providers was around $38,000.

The amount paid at the insurance negotiated rates was around $15,000.

>> I am new to the group so a little background:> > > > I am a 61 year-old male living in Midland Texas. I was diagnosed with IPF> November 30th, 2007. I had been seeing a pulmonary doctor in Midland (there> are two) in whom, for reasons I won't go into, I have lost confidence. I> went to and White Clinic in Temple Texas and saw a Dr. Dekeratry. The> doctor told me he took an aggressive approach to treating IPF and> recommended a lung biopsy so we would better know how to treat my condition.> I have had two CT scans, one PET scan, and 3 PFT's. I would like to hear> from anyone out there that has had a lung biopsy (Thoracoscopy) and were> there any actual benefits to having this done. Also would like to know the> approximate cost of this procedure. - Thanks - Jim>

[Guest guest]

Jim, I had a biopsy just to satisfy my curiosity about what type of PF I had. My pulmo didn't know.

The surgeon made a hole in my side, stuck in a tube to drain blood away from the lungs, cut two smaller slits in my back and snipped out tiny pieces of my lung. I was in the hospital two days, recovered quickly. The most painfull part was removing the big square piece of duct tape that had been placed over the hole.

What did I get from that? The report came back Usual Interstial Phemonia (UIP), which is another name for Idiopathic Pulmonry Fibrosis. Was it worth it? Well, I no longer have to worry whether I'm getting the proper treatment for my type of fibrosis. The truth is I don't get any treatment because so far I don't have any need. And I'm in my fourth year.

So, it's a highly personal decision. There are many others who have had entirely different experiences with their biopsies. I'm sure you will hear from them.

Welcome to the group. As we say, we're glad to have you, but we're sorry you have the disease that puts you here. You will this a friendly, helpful group. Collectively, they tremendous knowledge of fibrosis and a great many years of experience dealing with it. Listen to them. You'll get more and better info from them than from you doctor. Jack79/IPF - UIP/dx06/05 Maine

Lung biopsy questions

I am new to the group so a little background:

I am a 61 year-old male living in Midland Texas. I was diagnosed with IPF November 30th, 2007. I had been seeing a pulmonary doctor in Midland

(there are two) in whom, for reasons I won’t go into, I have lost confidence. I went to and White Clinic in Temple Texas and saw a Dr. Dekeratry. The doctor told me he took an aggressive approach to treating IPF and recommended a lung biopsy so we would better know how to treat my condition. I have had two CT scans, one PET scan, and 3 PFT’s. I would like to hear from anyone out there that has had a lung biopsy (Thoracoscopy) and were there any actual benefits to having this done. Also would like to know the approximate cost of this procedure. – Thanks –

Jim

[Guest guest]

Thanks for your response

Sher. As far as Dx the CT scans are consistent with IPF. The report

uses language like “evidence of interstitial lung disease” and “evidence

of honeycombing particularly at the lung bases” and “areas of

bronchiectasis”, etc. PFT test I don’t remember exactly what

the numbers were but they are not too bad but have been a little worse each

time. I am not on O2. The worst thing right now for me is the

coughing. Thanks for sharing with me.

Re:

Lung biopsy questions

Jim ... I

want to acknowledge your post...

You don't say

what the tests you have had show.

There are

many here who have had lung bios and many who do not. I am an older member (70)

and age figured in to my decision against a lung bio. I was dx (diagnosed)

3-2006 and remained fairly stable for a couple of years. The past few

months I have had some progression of my IPF.

For me, the

way it is is the way it is and " knowing what kind " still leaves very

limited treatment. Prednisone is the most common and I choose not to take that

because of the side effects...one being extreme weight gain!

Others will

respond to you. Get all the information before you have a bio, Jim. It is not

unusual to go through that very invasive surgery and still not know.

Lots of

information here on the board for you.

Welcome.

MamaSher, age 70. IPF 3-06,

OR.

Nasturtiums

Don't fret about tomorrow, God is already there!

Lung biopsy questions

I am new to the group so a little

background:

I am a 61 year-old male living in

Midland Texas. I was diagnosed with IPF November 30th,

2007. I had been seeing a pulmonary doctor in Midland (there are two) in

whom, for reasons I won’t go into, I have lost confidence. I went

to and White Clinic in Temple Texas and saw a Dr. Dekeratry. The

doctor told me he took an aggressive approach to treating IPF and recommended a

lung biopsy so we would better know how to treat my condition. I have had

two CT scans, one PET scan, and 3 PFT’s. I would like to hear from

anyone out there that has had a lung biopsy (Thoracoscopy) and were there any

actual benefits to having this done. Also would like to know the

approximate cost of this procedure. – Thanks – Jim

[Guest guest]

Thanks for

the info Jack.

Lung biopsy questions

I am new to the group so a little

background:

I am a 61 year-old male living in

Midland Texas. I was diagnosed with IPF November 30th,

2007. I had been seeing a pulmonary doctor in Midland (there are two) in

whom, for reasons I won’t go into, I have lost confidence. I went to

and White Clinic in Temple Texas and saw a Dr. Dekeratry. The doctor

told me he took an aggressive approach to treating IPF and recommended a lung

biopsy so we would better know how to treat my condition. I have had two

CT scans, one PET scan, and 3 PFT’s. I would like to hear from anyone out

there that has had a lung biopsy (Thoracoscopy) and were there any actual

benefits to having this done. Also would like to know the approximate

cost of this procedure. – Thanks – Jim

[Guest guest]

Thanks

Bruce. I’m getting lots of good advice from the Group.

Re:

Lung biopsy questions

Jim

First, I would want to know what he means by

" aggressive approach " . Second, I would say that the approach to be

taken is your choice based on his advice and other education.

At this point the key questions are:

1-What has he concluded from the tests done and how

sure is he.

2-What does he hope to learn from the biopsy and how

does he suggest you use that information.

Sometimes, biopsies are necessary to determine if you

have PF. Most of the time they are not. Most of the time they are used to find

out or to verify what form of Interstitial Lung Disease you have. That

information then may be used to determine treatment or to qualify you for

clinical trials.

You need to not only think about the biopsy decision

but the treatment decision. I had my biopsy to determine my form of ILD as I

had decided in advance that if I had UIP I would not try prednisone and if I

had NSIP or other variations I would use imuran and prednisone.

Now, some are going to try Imuran and Prednisone

regardless and others are not going to try them under any circumstances. For

them, my reasoning would not seem valid.

I am glad I had my VATS. However, the doctors in no

way fully advised me of it in advance. It is a very invasive procedure. I had it

a year ago and still have pain around the incisions and as a result of it.

However, I had no serious problems. Some never have any pain or problem. Some

have serious problems after.

As to the cost:

·

The amount billed by the providers was around

$38,000.

·

The amount paid at the insurance negotiated rates

was around $15,000.

>

> I am new to the group so a little background:

>

>

>

> I am a 61 year-old male living in Midland Texas. I was diagnosed with IPF

> November 30th, 2007. I had been seeing a pulmonary doctor in Midland

(there

> are two) in whom, for reasons I won't go into, I have lost confidence. I

> went to and White Clinic in Temple Texas and saw a Dr. Dekeratry.

The

> doctor told me he took an aggressive approach to treating IPF and

> recommended a lung biopsy so we would better know how to treat my

condition.

> I have had two CT scans, one PET scan, and 3 PFT's. I would like to hear

> from anyone out there that has had a lung biopsy (Thoracoscopy) and were

> there any actual benefits to having this done. Also would like to know the

> approximate cost of this procedure. - Thanks - Jim

>

[Guest guest]

Hi Jim,

I had a right lung biopsy in January 2008 which diagnosed me with UIP (usual interstitial pneumonia). The procedure was approximately $35,000 (just for the hospital), the doctor cost was around $5000 to $6000, then you have the anesthesiologist cost which are another few thousand and I guess all total it cost me around $40 to $45000. Luckily I have insurance, but still am stuck with about $8000 to $10000 still owed. If I had to do it over again, I probably would. I had a horrible experience with it, though, and I am not trying to scare you, but my diagnosis only proved what the CT scans had already shown and the PFTs, which was that I had pulmonary fibrosis. The only difference in the diagnosis was that with idiopathic pulmonary fibrosis, you can get on clinical trials because idiopathic means they don't know what caused it, so you can trial pretty much anything to see if it works to slow disease progression. My

pulmo told me with UIP, there is no treatment and there is no cure and all they know to give is Imuran and prednisone (which he had told me before the biopsy), and it may slow it down and it may not. That was in January at which time I had 68% lung function. In June 2008, I had repeat PFTs and it showed 56% lung function, so obviously the meds were not working to that point. I just had another set of repeat PFTs last week and will find out next week what they showed to see if I am any better since they increased the Imuran in June from 100 mg a day to 150 mg. Hopefully I will get better news. The wait is horrible!! As far as the actual biopsy itself, some people here have had no problems at all and breezed right through it. For me, it was the most painful thing I have ever gone through and was 4 days of living hell for me. The night after surgery I got this awful headache and started throwing up to the

point of dehydration. Finally got that controlled, went home on the fourth day after surgery, got home and 2 days later had to go back to the ER only to find I had pneumonia in both lungs. Was not a fun procedure for me at all. BUT -- not to scare you from doing it, because as I said, some people on this group have had no problems at all with it and would do it again in a heartbeat, too. I would not want to go through the pain again, but on a good note, at least I do know which type of PF I have and I guess that is of some comfort. I hope this helps you in your decision. I am here to listen!!CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08Mississippi

Subject: RE: Lung biopsy questionsTo: Breathe-Support Date: Friday, September 19, 2008, 3:03 PM

Thanks for your response Sher. As far as Dx the CT scans are consistent with IPF. The report uses language like “evidence of interstitial lung disease” and “evidence of honeycombing particularly at the lung bases” and “areas of bronchiectasis”, etc. PFT test I don’t remember exactly what the numbers were but they are not too bad but have been a little worse each time. I am not on O2. The worst thing right now for me is the coughing. Thanks for sharing with me.

Re: Lung biopsy questions

Jim ... I want to acknowledge your post...

You don't say what the tests you have had show.

There are many here who have had lung bios and many who do not. I am an older member (70) and age figured in to my decision against a lung bio. I was dx (diagnosed) 3-2006 and remained fairly stable for a couple of years. The past few months I have had some progression of my IPF.

For me, the way it is is the way it is and "knowing what kind" still leaves very limited treatment. Prednisone is the most common and I choose not to take that because of the side effects...one being extreme weight gain!

Others will respond to you. Get all the information before you have a bio, Jim. It is not unusual to go through that very invasive surgery and still not know.

Lots of information here on the board for you.

Welcome.

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

Lung biopsy questions

I am new to the group so a little background:

I am a 61 year-old male living in Midland Texas. I was diagnosed with IPF November 30th, 2007. I had been seeing a pulmonary doctor in Midland (there are two) in whom, for reasons I won’t go into, I have lost confidence. I went to and White Clinic in Temple Texas and saw a Dr. Dekeratry. The doctor told me he took an aggressive approach to treating IPF and recommended a lung biopsy so we would better know how to treat my condition. I have had two CT scans, one PET scan, and 3 PFT’s. I would like to hear from anyone out there that has had a lung biopsy (Thoracoscopy) and were there any actual benefits to having this done. Also would like to know the approximate cost of this procedure. – Thanks – Jim

[Guest guest]

Thanks

Carolyn. I’ve gone back and forth on this but need to decide pretty

quick as my surgery is set up for the 25th of this month.

Putting two and two together with what you have told me since my doctor says he

takes an aggressive approach to treating the disease he probably wants the

biopsy for the diagnosis if that is what it takes to get on the clinical trials

medications. Thanks again. - Jim

Re:

Lung biopsy questions

Jim ... I want to acknowledge your

post...

You don't say what the tests you have

had show.

There are many here who have had lung

bios and many who do not. I am an older member (70) and age figured in to my

decision against a lung bio. I was dx (diagnosed) 3-2006 and remained fairly

stable for a couple of years. The past few months I have had some

progression of my IPF.

For me, the way it is is the way it is

and " knowing what kind " still leaves very limited treatment.

Prednisone is the most common and I choose not to take that because of

the side effects...one being extreme weight gain!

Others will respond to you. Get all the

information before you have a bio, Jim. It is not unusual to go through that

very invasive surgery and still not know.

Lots of information here on the board

for you.

Welcome.

MamaSher, age 70. IPF 3-06, OR.

Nasturtiums

Don't fret about tomorrow, God is already there!

Lung biopsy questions

I am new to the group so a little background:

I am a 61 year-old male living in Midland Texas. I

was diagnosed with IPF November 30th, 2007. I had been

seeing a pulmonary doctor in Midland (there are two) in whom, for reasons I

won’t go into, I have lost confidence. I went to and White

Clinic in Temple Texas and saw a Dr. Dekeratry. The doctor told me he

took an aggressive approach to treating IPF and recommended a lung biopsy so

we would better know how to treat my condition. I have had two CT

scans, one PET scan, and 3 PFT’s. I would like to hear from

anyone out there that has had a lung biopsy (Thoracoscopy) and were there any

actual benefits to having this done. Also would like to know the

approximate cost of this procedure. – Thanks – Jim

[Guest guest]

Jim,.. drats that your numbers don't hold steady. Worsening we don't want! My tests reported pretty much the same thing.

I'll be anxious to see what the next PFTs reveal...in Dec.

Keep on keepin' on.

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

Lung biopsy questions

I am new to the group so a little background:

I am a 61 year-old male living in Midland Texas. I was diagnosed with IPF November 30th, 2007. I had been seeing a pulmonary doctor in Midland (there are two) in whom, for reasons I won’t go into, I have lost confidence. I went to and White Clinic in Temple Texas and saw a Dr. Dekeratry. The doctor told me he took an aggressive approach to treating IPF and recommended a lung biopsy so we would better know how to treat my condition. I have had two CT scans, one PET scan, and 3 PFT’s. I would like to hear from anyone out there that has had a lung biopsy (Thoracoscopy) and were there any actual benefits to having this done. Also would like to know the approximate cost of this procedure. – Thanks – Jim

[Guest guest]

I wish you all the best of luck!!CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08Mississippi

From: J. C. Fox <jcfox2335@sbcglobal .net>Subject: RE: Lung biopsy questionsTo: Breathe-Support@ yahoogroups. comDate: Friday, September 19, 2008, 3:03 PM

Thanks for your response Sher. As far as Dx the CT scans are consistent with IPF. The report uses language like “evidence of interstitial lung disease” and “evidence of honeycombing particularly at the lung bases” and “areas of bronchiectasis” , etc. PFT test I don’t remember exactly what the numbers were but they are not too bad but have been a little worse each time. I am not on O2. The worst thing right now for me is the coughing. Thanks for sharing with me.

Re: Lung biopsy questions

Jim ... I want to acknowledge your post...

You don't say what the tests you have had show.

There are many here who have had lung bios and many who do not. I am an older member (70) and age figured in to my decision against a lung bio. I was dx (diagnosed) 3-2006 and remained fairly stable for a couple of years. The past few months I have had some progression of my IPF.

For me, the way it is is the way it is and "knowing what kind" still leaves very limited treatment. Prednisone is the most common and I choose not to take that because of the side effects...one being extreme weight gain!

Others will respond to you. Get all the information before you have a bio, Jim. It is not unusual to go through that very invasive surgery and still not know.

Lots of information here on the board for you.

Welcome.

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

Lung biopsy questions

I am new to the group so a little background:

I am a 61 year-old male living in Midland Texas. I was diagnosed with IPF November 30th, 2007. I had been seeing a pulmonary doctor in Midland (there are two) in whom, for reasons I won’t go into, I have lost confidence. I went to and White Clinic in Temple Texas and saw a Dr. Dekeratry. The doctor told me he took an aggressive approach to treating IPF and recommended a lung biopsy so we would better know how to treat my condition. I have had two CT scans, one PET scan, and 3 PFT’s. I would like to hear from anyone out there that has had a lung biopsy (Thoracoscopy) and were there any actual benefits to having this done. Also would like to know the approximate cost of this procedure. – Thanks – Jim

[Guest guest]

Jim,

I'll just put my 2 cents in here. I had my biopsy in June of 06. Initially the intent was to do a VATS but I ended up with an open lung biopsy because of complications with the anesthesia. (I did not react well to the general anesthesia. My respirations were severely depressed by the drugs. I think I took several years off the lives of my doctors.)

The biopsy showed a definite diagosis of Fibrotic NSIP (non-specific interstitial pneumonitis) which has been confirmed by pathologists at Columbia Presbyterian in NYC and at Duke here in NC.

I'm the kind of person who has a need to know. I want to understand as best I can what is going on inside my body. The biopsy helped to satisfy that need. Though it was not fun. Post-op I was on a ventilator for 2 days and had a chest tube for I think 4 days. I had my stiches out about 10 days after the surgery and since then I've not had any further problems.

If I had it to do over again, I would definitely do it. This is a very personal subjective decision and you have to take in many factors not the least of which is your own overall health and how well you judge you can withstand surgery. General anesthesia for someone with active lung disease is not something anyone should take lightly.

I'm glad you're finding information and support here. Aren't these folks the best?!!

Beth

Age 48 Fibrotic NSIP 06/06 UCTD 07/08

Change everything. Love and Forgive

Lung biopsy questions

I am new to the group so a little background:

I am a 61 year-old male living in Midland Texas. I was diagnosed with IPF November 30th, 2007. I had been seeing a pulmonary doctor in Midland (there are two) in whom, for reasons I won’t go into, I have lost confidence. I went to and White Clinic in Temple Texas and saw a Dr. Dekeratry. The doctor told me he took an aggressive approach to treating IPF and recommended a lung biopsy so we would better know how to treat my condition. I have had two CT scans, one PET scan, and 3 PFT’s. I would like to hear from anyone out there that has had a lung biopsy (Thoracoscopy) and were there any actual benefits to having this done. Also would like to know the approximate cost of this procedure. – Thanks – Jim

[Guest guest]

Hi Jim,

Let me add my welcome. I'm fairly new here as well - I was diagnosed

one year ago this week. After seeing a pulmonary specialist in a

nearby city (Concord, NH), I was referred to a specialist in

pulmonary fibrosis at Beth Israel Hospital in Boston, MA. Like you,

I had numerous CT scans and PFT's and finally it was suggested that I

have a biopsy - mostly to definitively determine that it was IPF and

not hypersensitivity pnuemonitis, caused by mold or some other agent

in the air.

I had the VATS - Video Assisted Thoracic Surgery - and was only in

the hospital overnight. I went home the next day (in the middle of a

major snow storm!) and never suffered any major discomfort or pain.

The results of the biopsy confirmed that it was IPF and I have been

on prednisone and emuran since then. I am currently weaning off of

the prednisone. I am fortunate in that I have not had any of the

weight gain that many people experience while on prednisone, in fact,

over the past 6 weeks, I have managed to lose 8 pounds!

Hope this information is useful. As has been said before, there are

many of us here and we have all had different experiences, but the

one thing that we do have in common is that we are willing to share

our experiences, in order to help others make better informed

decisions.

Best of luck to you, whatever you decide!

Steve aka...Knip Dx 9/07 confirmed via VATS 12/07

56 NH

>

> I am new to the group so a little background:

>

>

>

> I am a 61 year-old male living in Midland Texas. I was diagnosed

with IPF

> November 30th, 2007. I had been seeing a pulmonary doctor in

Midland (there

> are two) in whom, for reasons I won't go into, I have lost

confidence. I

> went to and White Clinic in Temple Texas and saw a Dr.

Dekeratry. The

> doctor told me he took an aggressive approach to treating IPF and

> recommended a lung biopsy so we would better know how to treat my

condition.

> I have had two CT scans, one PET scan, and 3 PFT's. I would like

to hear

> from anyone out there that has had a lung biopsy (Thoracoscopy) and

were

> there any actual benefits to having this done. Also would like to

know the

> approximate cost of this procedure. - Thanks - Jim

>

[Guest guest]

Thanks

for the share Steve. I have actually learned more from the Group in just

a couple of hours than I found out from three doctors in 9 months. Thanks

again – Jim

Re:

Lung biopsy questions

Hi Jim,

Let me add my welcome. I'm fairly new here as well - I was diagnosed

one year ago this week. After seeing a pulmonary specialist in a

nearby city (Concord, NH), I was referred to a specialist in

pulmonary fibrosis at Beth Israel Hospital in Boston, MA. Like you,

I had numerous CT scans and PFT's and finally it was suggested that I

have a biopsy - mostly to definitively determine that it was IPF and

not hypersensitivity pnuemonitis, caused by mold or some other agent

in the air.

I had the VATS - Video Assisted Thoracic Surgery - and was only in

the hospital overnight. I went home the next day (in the middle of a

major snow storm!) and never suffered any major discomfort or pain.

The results of the biopsy confirmed that it was IPF and I have been

on prednisone and emuran since then. I am currently weaning off of

the prednisone. I am fortunate in that I have not had any of the

weight gain that many people experience while on prednisone, in fact,

over the past 6 weeks, I have managed to lose 8 pounds!

Hope this information is useful. As has been said before, there are

many of us here and we have all had different experiences, but the

one thing that we do have in common is that we are willing to share

our experiences, in order to help others make better informed

decisions.

Best of luck to you, whatever you decide!

Steve aka...Knip Dx 9/07 confirmed via VATS 12/07

56 NH

>

> I am new to the group so a little background:

>

>

>

> I am a 61 year-old male living in Midland Texas. I was diagnosed

with IPF

> November 30th, 2007. I had been seeing a pulmonary doctor in

Midland (there

> are two) in whom, for reasons I won't go into, I have lost

confidence. I

> went to and White Clinic in Temple Texas and saw a Dr.

Dekeratry. The

> doctor told me he took an aggressive approach to treating IPF and

> recommended a lung biopsy so we would better know how to treat my

condition.

> I have had two CT scans, one PET scan, and 3 PFT's. I would like

to hear

> from anyone out there that has had a lung biopsy (Thoracoscopy) and

were

> there any actual benefits to having this done. Also would like to

know the

> approximate cost of this procedure. - Thanks - Jim

>

[Guest guest]

Jim,

I am relatively new here also. I live in the Dallas area, so welcome

neighbor! I am 40 years old and had the VATS one year ago, Sept 18,

2007. I am glad I did because the biopsy went to the Mayo Clinic in

sdale, Az. The Pathologist said it was ILD-NSIP and it would not

surprise him if this patient would develop Polymyositis or

Dermatomyositis. At the time I had no signs or symptoms pointing to

Dermatomyositis but over the course of this last year I have been

diagnosed with it. I have been frustrated with doctors this past year

and a half but I have to " tip my cap " to Dr Colby at Mayo

Clinic for " nailing it on the head " . I am taking 10mg of Prednisone

and 100mg of Imuran. Coincidently this is the same treatment for

Dermatomyositis and NSIP. I am also being told that since it is NSIP

characterized more by inflammation than fibrosis then my prognosis

would be better.

You can read more at brianbreese.com when you are bored and have

nothing better to do!

God bless,