Re: Surgical Lung Biopsy

[Guest guest]

,

Honestly as we talked about yesterday I would get a referral to UWMC and be evaluated. Your situation is so complex, you have multiple risk factors....it just cries out for someone who sees people with interstitial lung disease all the time, patient after patient and has the knowledge and resources to sort out what's going on with you.

Unfortunately your estimation of what your current doctor is doing is probably more accurate than you want it to be. Very few community based pulmos see enough pulmonary fibrosis to know anything beyond the basics. I'm sure he/she is trying to help but you will be much better off when you see someone at UWMC.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breath Support <Breathe-Support >Sent: Wednesday, July 22, 2009 10:31:51 AMSubject: Surgical Lung Biopsy

Is the surgical lung biopsy the only means of determining what my ILD is? After hearing from all of you yesterday and from the studies I've read on this site, and my genetic factor (brother w/ IPF), it sounds like I need to have the surgical lung biopsy performed to determine exactly what my disease is? I feel like my PS doctor just threw all these medicines at me and said take these and we'll see what works...like I'm a guinea pig?C_IPF_5/09

[Guest guest]

Pink

There are several doctors who endorse just the philosophy you used. They

say take imuran and prednisone and if it appears to work then its

probably NSIP or another form, but, if not, it's probably UIP. Now, the

exception, is that if it works to relieve symptoms short term only, then

it may still be UIP. When there is also inflammation, the meds will

clear the inflammation and improve symptoms, even if not doing anything

for the underlying disease.

The other factor that they emphasize is they have nothing else so this

is the only thing they know to try so why not.

Now, I am not mentally equipped to handle that approach so I did have a

biopsy to confirm the form.

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> From: worth hope2thend@...

> Subject: Surgical Lung Biopsy

> To: " Breath Support " Breathe-Support

> Date: Wednesday, July 22, 2009, 10:31 AM

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> Is the surgical lung biopsy the only means of determining what my ILD

is?

> After hearing from all of you yesterday and from the studies I've read

on this site, and my genetic factor (brother w/ IPF), it sounds like I

need to have the surgical lung biopsy performed to determine exactly

what my disease is?

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> I feel like my PS doctor just threw all these medicines at me and said

take these and we'll see what works...like I'm a guinea pig?

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> C_IPF_5/09

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[Guest guest]

,

Although I did have a problem with my lung biopsy, the one study that keeps coming to mind found that greater than 50% of those who chose to undergo biopsy also had changes in treatment due directly to what the biopsy revealed about their disease. A biopsy is also a prerequisite for any medical trials, as far as I have seen. Without complications, which are rare, you should be back to your robust self in two to 4 weeks at most.

Jerry/Mississippi/54/IPF/April 05

Who believes hard times help us appreciate the good times even more.

Subject: Surgical Lung BiopsyTo: "Breath Support" <Breathe-Support >Date: Wednesday, July 22, 2009, 2:31 PM

Is the surgical lung biopsy the only means of determining what my ILD is? After hearing from all of you yesterday and from the studies I've read on this site, and my genetic factor (brother w/ IPF), it sounds like I need to have the surgical lung biopsy performed to determine exactly what my disease is? I feel like my PS doctor just threw all these medicines at me and said take these and we'll see what works...like I'm a guinea pig?C_IPF_5/09