Re: lung biopsy

[Guest guest]

Thanks: I am not a positive thinking guy. If the glass is near empty--it is my job is to deal that glass. In one year have had some difficult setbacks. Large parts of my Day are controlled by spitting up white stuff. I learned from my brother one important lesson--this disease can be very depressive and it can take you through terrible lows and very high highs. I use determination and mood pills. So far I have avoided the lows and highs. Unfortunately I try hire each day folks to do what my handicapped wife and I could do alone. She was my memory backup.

I look at the dates that folks in this group with IPF have survived. This brings optimism and the I read about the 28 + or - months and feel I must be prepared to turn over my mess to my children. I am not there yet by a long shot. I even hire help to get there.

I have a question about how you calculate the odds. The test of how long one might live with disease seems to be the six minute walk. One would think that exercise would do much to help with success on the walk. However, I can very find very little on the web or from MDP's comments that support exercize as a way to extend ones life with IPF.

How much are you folks exercising each week. Burns

..

Subject: Re: lung biopsyTo: Breathe-Support Date: Tuesday, December 15, 2009, 6:57 PM

Bruce,I am so awed by what you wrote and how you wrote it. I am trying to live the same way though not always successful every day. If I am honest, I would need to say that I believe this is so much harder for my husband Jim than it is for me. I put everything in order for whenever it is needed (which would have been a good thing to do regardless) and since then, have been doing myh best to live each day to the fullest with my friends, family and my faith, thnk you so much...what you put here meant a great deal to me.Kathy......FlPF.......4/07Wtg for the TX call> >> > Beth,> > How come every time I read a post about IPF/UIP it is so frightening. > I feel like I'm just waiting until the day I

die. I know that I am> suppose to fight this feeling but I don't see anything positive coming> out of this.> > > >> >> >> >> > ____________ _________ _________ __> > From: Beth mbmurtha@> > To: Breathe-Support@ yahoogroups. com> > Sent: Tue, December 15, 2009 10:48:10 AM> > Subject: Re: lung biopsy> >> >> > Patti,> > I would not call it a general consensus by any means. There is a wide> variety of experiences and opinions here and very little in the way of> agreement or consensus. That's what makes this decision so very> difficult.> > I had an open lung biopsy in June of 2006.

The surgery itself was> uneventful. My reaction to the pre-op sedation and the anesthesia was> anything but. I recovered fairly easily from the biopsy and once the> stiches were out I've never had so much as a twinge. If I had it to do> over again, I would because I gained useful information. It's not just a> matter of obsessively having to know what the label is. It's learning> and understanding what I have in order to know what my options are.> Perhaps if the biopsy just said UIP I would feel differently, I'll never> know. But because I was diagnosed with NSIP we knew that prednisone was> a reasonable option for me and proceeded accordingly. My biopsy results> still have bearing on my treatment all this time later. If I had not had> the biopsy and was treated as though I had IPF/UIP I probably wouldn't> be here since the steroids halted the progression and

eventually> stablized me. So I have no regrets.> >> > I would not however tell anyone to do the same thing. You have to> weigh the pros and cons for yourself. Take into consideration things> like your current condition and stability, how certain is your current> diagnosis, your surgeons experience, your anethesiologists experience> with pf patients.... all these things factor in to a solid decision.> >> > Beth> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis 11/08> >> >> >> >> >> >> > ____________ _________ _________ __> > From: Patti Bruckman napa73 (AT) comcast (DOT) net>> > To: Breathe-Support@ yahoogroups. com> > Sent: Mon, December 14, 2009 10:47:07 PM> > Subject: Re: lung biopsy> >> >> > I thank

everyone for all your comments concerning a surgical biopsy. > It appears that the general consensus is that it often does not give any> more information than the bronchoscope and perhaps not worth the risk. > If they suggest this I certainly will voice my concerns.> >> > .......that is just terrible about your brother....I am so sorry.> >> >> > Patti....IPF. ...2007> >>

[Guest guest]

,

My six minute walk improved 25% after my month long pulmonary rehab program. I've continued exercising in the graduate program 5 days a week. I've lost weight, I'm significantly stronger and my endurance has improved.

Whether I'll live longer because of this is anybody's guess. What I know for sure is that my quality of life will be better while I'm alive.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Tue, December 15, 2009 7:55:08 PMSubject: Re: Re: lung biopsy

Thanks: I am not a positive thinking guy. If the glass is near empty--it is my job is to deal that glass. In one year have had some difficult setbacks. Large parts of my Day are controlled by spitting up white stuff. I learned from my brother one important lesson--this disease can be very depressive and it can take you through terrible lows and very high highs. I use determination and mood pills. So far I have avoided the lows and highs. Unfortunately I try hire each day folks to do what my handicapped wife and I could do alone. She was my memory backup.

I look at the dates that folks in this group with IPF have survived. This brings optimism and the I read about the 28 + or - months and feel I must be prepared to turn over my mess to my children. I am not there yet by a long shot. I even hire help to get there.

I have a question about how you calculate the odds. The test of how long one might live with disease seems to be the six minute walk. One would think that exercise would do much to help with success on the walk. However, I can very find very little on the web or from MDP's comments that support exercize as a way to extend ones life with IPF.

How much are you folks exercising each week. Burns

..

From: patrickkathleen <patrickkathleen@ yahoo.com>Subject: Re: lung biopsyTo: Breathe-Support@ yahoogroups. comDate: Tuesday, December 15, 2009, 6:57 PM

Bruce,I am so awed by what you wrote and how you wrote it. I am trying to live the same way though not always successful every day. If I am honest, I would need to say that I believe this is so much harder for my husband Jim than it is for me. I put everything in order for whenever it is needed (which would have been a good thing to do regardless) and since then, have been doing myh best to live each day to the fullest with my friends, family and my faith, thnk you so much...what you put here meant a great deal to me.Kathy......FlPF.......4/07Wtg for the TX call> >> > Beth,> > How come every time I read a post about IPF/UIP it is so frightening. > I feel like I'm just waiting until the day I die. I know that I am> suppose to fight this feeling but I don't see anything positive coming> out of

this.> > > >> >> >> >> > ____________ _________ _________ __> > From: Beth mbmurtha@> > To: Breathe-Support@ yahoogroups. com> > Sent: Tue, December 15, 2009 10:48:10 AM> > Subject: Re: lung biopsy> >> >> > Patti,> > I would not call it a general consensus by any means. There is a wide> variety of experiences and opinions here and very little in the way of> agreement or consensus. That's what makes this decision so very> difficult.> > I had an open lung biopsy in June of 2006. The surgery itself was> uneventful. My reaction to the pre-op sedation and the anesthesia was> anything but. I recovered fairly easily from the biopsy

and once the> stiches were out I've never had so much as a twinge. If I had it to do> over again, I would because I gained useful information. It's not just a> matter of obsessively having to know what the label is. It's learning> and understanding what I have in order to know what my options are.> Perhaps if the biopsy just said UIP I would feel differently, I'll never> know. But because I was diagnosed with NSIP we knew that prednisone was> a reasonable option for me and proceeded accordingly. My biopsy results> still have bearing on my treatment all this time later. If I had not had> the biopsy and was treated as though I had IPF/UIP I probably wouldn't> be here since the steroids halted the progression and eventually> stablized me. So I have no regrets.> >> > I would not however tell anyone to do the same thing. You have to> weigh the pros and

cons for yourself. Take into consideration things> like your current condition and stability, how certain is your current> diagnosis, your surgeons experience, your anethesiologists experience> with pf patients.... all these things factor in to a solid decision.> >> > Beth> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis 11/08> >> >> >> >> >> >> > ____________ _________ _________ __> > From: Patti Bruckman napa73 (AT) comcast (DOT) net>> > To: Breathe-Support@ yahoogroups. com> > Sent: Mon, December 14, 2009 10:47:07 PM> > Subject: Re: lung biopsy> >> >> > I thank everyone for all your comments concerning a surgical biopsy. > It appears that the general consensus is that it often does not give any> more information than the

bronchoscope and perhaps not worth the risk. > If they suggest this I certainly will voice my concerns.> >> > .......that is just terrible about your brother....I am so sorry.> >> >> > Patti....IPF. ...2007> >>

[Guest guest]

There is no means of estimating when you're going to die based on six

minute walk or anything else. Exercise helps the quality of life more

than necessarily the length of life. You surely aren't a positive

thinker and seem quite angry at this point. I've been there and its not

a very pleasant way to live. I'm sorry for your set backs and difficult

days. I hope you can find a way to come to peace with your disease. I'm

not suggesting that you don't deal with reality but don't throw out what

is left in the glass just because it's not as much as you wish it was.

I don't know what you're referring to in 28 months. The mean life after

diagnosis with IPF (and this only applies to IPF specifically) is 3.2

years with most going 2-5 years but that really means nothing to any of

us individually. We're all diagnosed at different times. The averages

are impacted by those not diagnosed until they're on their death beds.

Some live much longer. Mostly if we live longer they change the

diagnosis.

You mention mood pills. If you're taking psychiatric meds I do hope also

you're receiving counseling as it multiplies any benefit greatly.

> > >

> > > Beth,

> > > How come every time I read a post about IPF/UIP it is so

frightening.

> > I feel like I'm just waiting until the day I die. I know that I am

> > suppose to fight this feeling but I don't see anything positive

coming

> > out of this.

> > >

> > >

> > >

> > >

> > >

> > > ____________ _________ _________ __

> > > From: Beth mbmurtha@

> > > To: Breathe-Support@ yahoogroups. com

> > > Sent: Tue, December 15, 2009 10:48:10 AM

> > > Subject: Re: lung biopsy

> > >

> > >

> > > Patti,

> > > I would not call it a general consensus by any means. There is a

wide

> > variety of experiences and opinions here and very little in the way

of

> > agreement or consensus. That's what makes this decision so very

> > difficult.

> > > I had an open lung biopsy in June of 2006. The surgery itself was

> > uneventful. My reaction to the pre-op sedation and the anesthesia

was

> > anything but. I recovered fairly easily from the biopsy and once the

> > stiches were out I've never had so much as a twinge. If I had it to

do

> > over again, I would because I gained useful information. It's not

just a

> > matter of obsessively having to know what the label is. It's

learning

> > and understanding what I have in order to know what my options are.

> > Perhaps if the biopsy just said UIP I would feel differently, I'll

never

> > know. But because I was diagnosed with NSIP we knew that prednisone

was

> > a reasonable option for me and proceeded accordingly. My biopsy

results

> > still have bearing on my treatment all this time later. If I had not

had

> > the biopsy and was treated as though I had IPF/UIP I probably

wouldn't

> > be here since the steroids halted the progression and eventually

> > stablized me. So I have no regrets.

> > >

> > > I would not however tell anyone to do the same thing. You have to

> > weigh the pros and cons for yourself. Take into consideration things

> > like your current condition and stability, how certain is your

current

> > diagnosis, your surgeons experience, your anethesiologists

experience

> > with pf patients.... all these things factor in to a solid decision.

> > >

> > > Beth

> > > Moderator

> > > Fibrotic NSIP 06/06 Dermatomyositis 11/08

> > >

> > >

> > >

> > >

> > >

> > >

> > > ____________ _________ _________ __

> > > From: Patti Bruckman napa73 (AT) comcast (DOT) net>

> > > To: Breathe-Support@ yahoogroups. com

> > > Sent: Mon, December 14, 2009 10:47:07 PM

> > > Subject: Re: lung biopsy

> > >

> > >

> > > I thank everyone for all your comments concerning a surgical

biopsy.

> > It appears that the general consensus is that it often does not give

any

> > more information than the bronchoscope and perhaps not worth the

risk.

> > If they suggest this I certainly will voice my concerns.

> > >

> > > .......that is just terrible about your brother....I am so

sorry.

> > >

> > >

> > > Patti....IPF. ...2007

> > >

> >

>

[Guest guest]

, I was diagnosed in June of 2004 and am very happy with my life.. I don't look at it like I am surviving but living with a monster of a disease. I would of course like to be able to do more but it is what it is and I am grateful for all I am blessed with. And even more grateful for my husband that has totally changed his life for me. He takes me anywhere I want to go even though he has to work a day to get my 02 together. My point is don't look at the end of your life look at the day. Then at tomorrow. That is far enough. Even though I am going to start planning a Spring Fling after the first of the year.. YEAHHH.We'll see how that goes. Love & PrayersPeggy, IPF 2004

Thanks: I am not a positive thinking guy. If the glass is near empty--it is my job is to deal that glass. In one year have had some difficult setbacks. Large parts of my Day are controlled by spitting up white stuff. I learned from my brother one important lesson--this disease can be very depressive and it can take you through terrible lows and very high highs. I use determination and mood pills. So far I have avoided the lows and highs. Unfortunately I try hire each day folks to do what my handicapped wife and I could do alone. She was my memory backup.

I look at the dates that folks in this group with IPF have survived. This brings optimism and the I read about the 28 + or - months and feel I must be prepared to turn over my mess to my children. I am not there yet by a long shot. I even hire help to get there.

I have a question about how you calculate the odds. The test of how long one might live with disease seems to be the six minute walk. One would think that exercise would do much to help with success on the walk. However, I can very find very little on the web or from MDP's comments that support exercize as a way to extend ones life with IPF.

How much are you folks exercising each week. Burns

..

From: patrickkathleen <patrickkathleen (AT) yahoo (DOT) com>Subject: Re: lung biopsyTo: Breathe-Support Date: Tuesday, December 15, 2009, 6:57 PM

Bruce,I am so awed by what you wrote and how you wrote it. I am trying to live the same way though not always successful every day. If I am honest, I would need to say that I believe this is so much harder for my husband Jim than it is for me. I put everything in order for whenever it is needed (which would have been a good thing to do regardless) and since then, have been doing myh best to live each day to the fullest with my friends, family and my faith, thnk you so much...what you put here meant a great deal to me.Kathy......FlPF.......4/07Wtg for the TX call> >> > Beth,> > How come every time I read a post about IPF/UIP it is so frightening. > I feel like I'm just waiting until the day I

die. I know that I am> suppose to fight this feeling but I don't see anything positive coming> out of this.> > > >> >> >> >> > ____________ _________ _________ __> > From: Beth mbmurtha@> > To: Breathe-Support@ yahoogroups. com> > Sent: Tue, December 15, 2009 10:48:10 AM> > Subject: Re: lung biopsy> >> >> > Patti,> > I would not call it a general consensus by any means. There is a wide> variety of experiences and opinions here and very little in the way of> agreement or consensus. That's what makes this decision so very> difficult.> > I had an open lung biopsy in June of 2006.

The surgery itself was> uneventful. My reaction to the pre-op sedation and the anesthesia was> anything but. I recovered fairly easily from the biopsy and once the> stiches were out I've never had so much as a twinge. If I had it to do> over again, I would because I gained useful information. It's not just a> matter of obsessively having to know what the label is. It's learning> and understanding what I have in order to know what my options are.> Perhaps if the biopsy just said UIP I would feel differently, I'll never> know. But because I was diagnosed with NSIP we knew that prednisone was> a reasonable option for me and proceeded accordingly. My biopsy results> still have bearing on my treatment all this time later. If I had not had> the biopsy and was treated as though I had IPF/UIP I probably wouldn't> be here since the steroids halted the progression and

eventually> stablized me. So I have no regrets.> >> > I would not however tell anyone to do the same thing. You have to> weigh the pros and cons for yourself. Take into consideration things> like your current condition and stability, how certain is your current> diagnosis, your surgeons experience, your anethesiologists experience> with pf patients.... all these things factor in to a solid decision.> >> > Beth> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis 11/08> >> >> >> >> >> >> > ____________ _________ _________ __> > From: Patti Bruckman napa73 (AT) comcast (DOT) net>> > To: Breathe-Support@ yahoogroups. com> > Sent: Mon, December 14, 2009 10:47:07 PM> > Subject: Re: lung biopsy> >> >> > I thank

everyone for all your comments concerning a surgical biopsy. > It appears that the general consensus is that it often does not give any> more information than the bronchoscope and perhaps not worth the risk. > If they suggest this I certainly will voice my concerns.> >> > .......that is just terrible about your brother....I am so sorry.> >> >> > Patti....IPF. ...2007> >>

[Guest guest]

Thanks Bruce, I needed that! I love my family and that's what keeps me going. I will hold on to this e-mail and remind myself how important things are right now.To: Breathe-Support Sent: Tue, December 15, 2009 3:45:22 PMSubject: Re: lung biopsy

Positive: You're alive. You can enjoy life with UIP/IPF. It can be the

best years you've had if you make it so. You don't have Alzheimer's. You

don't have cancer. You don't have ALS. You weren't just in an accident

and laying paralyzed in a hospital bed being kept alive by artificial

means.

If what you want is to be told you're going to live forever and be

healthy its not there. In fact the prognosis isn't good. But you are

alive and life can be whatever you make it for as long as you have it.

Death is a moment in time. It happens on its own and doesn't require a

lot of time or effort or work ahead of time. Life is every moment until

that one and each can be treasured. Most also believe that what comes

after death is good. That's subject to individual belief.

But today is about living. I have UIP/IPF and I'm making this the best

time of my life. It's natural you are struggling with it. I strongly

suggest counseling if dealing with the disease is overwhelming you. You

aren't suppose to fight anything. But ultimately there is radical

acceptance and then making the most of it.

What have you really learned? That you'll ultimately die sometime? You

knew that. That it may be sooner than you hoped? Wasn't that always

possible? That it may be from UIP/IPF? It may not and as causes of death

go this certainly is not one of the worst ones..

Whether transplant is something you might pursue, I don't know.

It's hard but I am thankful for what I do have. I do feel lucky when I

see many others. Visit some forums of diseases where every day is filled

with pain beyond our imagination. I've done so when other possible

conditions have been mentioned. I think of Brett Bowser and what he and

his family would have given for a diagnosis of just IPF/UIP.

I know I'm more focused on living and on making the most of life than I

ever was before. I know I strengthened relationships with family and

visited those I hadn't seen for so long. In fact, I'll be making another

trip in January or February and see them in the process (and you,

Beth). I've done things since diagnosis that without this disease I

would have put off forever, one year at a time. I always said "next

year" but now I live each year as if it's my last. I wish I'd always

lived this way.

I know my personal odds because I'm too much a person seeking

information and who has laid them out to help make some decisions in

life. I've calculated odds of making it to various dates but I know I

don't have a stamp on my derriere with an expiration date.

My glass is 97% empty if I choose to look at it that way. Instead, I'm

going to look at the 3% still in the glass and think of it as the finest

champagne ever poured and savor it one sip at a time. And instead of

thinking as a normal glass, I'm picturing a glass that is about a mile

tall and so the amount still in it is still quite a bit to savor.

This is just how I'm personally approached life with UIP/IPF. I'm not

trying to minimize it but taking this kind of attitude is how I do live

with it, how I do find the positive. I even laugh about my mortality and

joke about the harsh realities with those closest to me because while I

can't beat the disease physically, I can beat it mentally and

emotionally and I intend to. Does it win some days? Oh yes it wins

battles. But I'm winning the war. I can control that part. I control how

I spend each day and how much pleasure I derive from it. I do have the

world's best counselor and I lean on her and will do so when I need to.

Some don't need one but I do. She's more valuable to me than my

pulmonologist, rheumatologist, nephrologist, neurologist, pulmonary

hypertension specialist, cardiologist, gastroenterologist, primary,

opthalmologist, ontorologist, and dermatologist all combined.

Life is good. It will end. But today it is good. And tomorrow it will

be. I'll deal with Friday later.

>

> Beth,

> How come every time I read a post about IPF/UIP it is so frightening.

I feel like I'm just waiting until the day I die. I know that I am

suppose to fight this feeling but I don't see anything positive coming

out of this.

>

>

>

>

>

> ____________ _________ _________ __

> From: Beth mbmurtha@...

> To: Breathe-Support@ yahoogroups. com

> Sent: Tue, December 15, 2009 10:48:10 AM

> Subject: Re: lung biopsy

>

>

> Patti,

> I would not call it a general consensus by any means. There is a wide

variety of experiences and opinions here and very little in the way of

agreement or consensus. That's what makes this decision so very

difficult.

> I had an open lung biopsy in June of 2006. The surgery itself was

uneventful. My reaction to the pre-op sedation and the anesthesia was

anything but. I recovered fairly easily from the biopsy and once the

stiches were out I've never had so much as a twinge. If I had it to do

over again, I would because I gained useful information. It's not just a

matter of obsessively having to know what the label is. It's learning

and understanding what I have in order to know what my options are.

Perhaps if the biopsy just said UIP I would feel differently, I'll never

know. But because I was diagnosed with NSIP we knew that prednisone was

a reasonable option for me and proceeded accordingly. My biopsy results

still have bearing on my treatment all this time later. If I had not had

the biopsy and was treated as though I had IPF/UIP I probably wouldn't

be here since the steroids halted the progression and eventually

stablized me. So I have no regrets.

>

> I would not however tell anyone to do the same thing. You have to

weigh the pros and cons for yourself. Take into consideration things

like your current condition and stability, how certain is your current

diagnosis, your surgeons experience, your anethesiologists experience

with pf patients.... all these things factor in to a solid decision.

>

> Beth

> Moderator

> Fibrotic NSIP 06/06 Dermatomyositis 11/08

>

>

>

>

>

>

> ____________ _________ _________ __

> From: Patti Bruckman napa73 (AT) comcast (DOT) net>

> To: Breathe-Support@ yahoogroups. com

> Sent: Mon, December 14, 2009 10:47:07 PM

> Subject: Re: lung biopsy

>

>

> I thank everyone for all your comments concerning a surgical biopsy.

It appears that the general consensus is that it often does not give any

more information than the bronchoscope and perhaps not worth the risk.

If they suggest this I certainly will voice my concerns.

>

> .......that is just terrible about your brother....I am so sorry.

>

>

> Patti....IPF. ...2007

>

[Guest guest]

Peggy

Spring fling! Wo! Wo! You are my inspiration!

Bob, 70, IPF 1/09,5 Bypasses 7/01

From: patrickkathleen <patrickkathleen (AT) yahoo (DOT) com>Subject: Re: lung biopsyTo: Breathe-Support@ yahoogroups. comDate: Tuesday, December 15, 2009, 6:57 PM

Bruce,I am so awed by what you wrote and how you wrote it. I am trying to live the same way though not always successful every day. If I am honest, I would need to say that I believe this is so much harder for my husband Jim than it is for me. I put everything in order for whenever it is needed (which would have been a good thing to do regardless) and since then, have been doing myh best to live each day to the fullest with my friends, family and my faith, thnk you so much...what you put here meant a great deal to me.Kathy......FlPF.......4/07Wtg for the TX call> >> > Beth,> > How come every time I read a post about IPF/UIP it is so frightening. > I feel like I'm just waiting until the day I die. I know that I am> suppose to fight this feeling but I don't see anything positive coming> out of

this.> > > >> >> >> >> > ____________ _________ _________ __> > From: Beth mbmurtha@> > To: Breathe-Support@ yahoogroups. com> > Sent: Tue, December 15, 2009 10:48:10 AM> > Subject: Re: lung biopsy> >> >> > Patti,> > I would not call it a general consensus by any means. There is a wide> variety of experiences and opinions here and very little in the way of> agreement or consensus. That's what makes this decision so very> difficult.> > I had an open lung biopsy in June of 2006. The surgery itself was> uneventful. My reaction to the pre-op sedation and the anesthesia was> anything but. I recovered fairly easily from the biopsy

and once the> stiches were out I've never had so much as a twinge. If I had it to do> over again, I would because I gained useful information. It's not just a> matter of obsessively having to know what the label is. It's learning> and understanding what I have in order to know what my options are.> Perhaps if the biopsy just said UIP I would feel differently, I'll never> know. But because I was diagnosed with NSIP we knew that prednisone was> a reasonable option for me and proceeded accordingly. My biopsy results> still have bearing on my treatment all this time later. If I had not had> the biopsy and was treated as though I had IPF/UIP I probably wouldn't> be here since the steroids halted the progression and eventually> stablized me. So I have no regrets.> >> > I would not however tell anyone to do the same thing. You have to> weigh the pros and

cons for yourself. Take into consideration things> like your current condition and stability, how certain is your current> diagnosis, your surgeons experience, your anethesiologists experience> with pf patients.... all these things factor in to a solid decision.> >> > Beth> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis 11/08> >> >> >> >> >> >> > ____________ _________ _________ __> > From: Patti Bruckman napa73 (AT) comcast (DOT) net>> > To: Breathe-Support@ yahoogroups. com> > Sent: Mon, December 14, 2009 10:47:07 PM> > Subject: Re: lung biopsy> >> >> > I thank everyone for all your comments concerning a surgical biopsy. > It appears that the general consensus is that it often does not give any> more information than the

bronchoscope and perhaps not worth the risk. > If they suggest this I certainly will voice my concerns.> >> > .......that is just terrible about your brother....I am so sorry.> >> >> > Patti....IPF. ...2007> >>

[Guest guest]

Patti,

Another thing to keep in mind when reading people's posts about their positive or not experiences with having a lung biopsy is that there are two types. My brother had the open lung biopsy and I think his lung disease was just too far advanced to recover from such a surgery.

OPEN LUNG BIOPSY. Open biopsies are performed in a hospital operating room under general anesthesia. Once the anesthesia has taken effect, the surgeon makes an incision over the lung area, a procedure called a thoracotomy. Some lung tissue is removed and the incision is closed with sutures. Chest tubes are placed with one end inside the lung and the other end protruding through the closed incision. Chest tubes are used to drain fluid and blood, and re-expand the lungs. They are usually removed the day after the procedure. The entire procedure normally takes about an hour. A chest x ray is performed immediately after the procedure to check for potential complications.

VIDEO-ASSISTED THORACOSCOPIC SURGERY. A minimally invasive technique, video-assisted thoracoscopic surgery (VATS) can be used to biopsy lung and mediastinal lesions. VATS may be performed on selected patients in place of open lung biopsy. While the patient is under general anesthetia, the surgeon makes several small incisions in the his or her chest wall. A thorascope, a thin, hollow, lighted tube with a tiny video camera mounted on it, is inserted through one of the small incisions. The other incisions allow the surgeon to insert special instruments to retrieve tissue for biopsy.

C_53_Familial IPF_5/09, Washington

HOPE doesn't disappoint!

> > > >> > I thank everyone for all your comments concerning a surgical biopsy. > It appears that the general consensus is that it often does not give any> more information than the bronchoscope and perhaps not worth the risk. > If they suggest this I certainly will voice my concerns.> >> > .......that is just terrible about your brother....I am so sorry.> >> >> > Patti....IPF. ...2007> >>

[Guest guest]

very well said Bruce.

> >

> > Beth,

> > How come every time I read a post about IPF/UIP it is so frightening.

> I feel like I'm just waiting until the day I die. I know that I am

> suppose to fight this feeling but I don't see anything positive coming

> out of this.

> >

> >

> >

> >

> >

> > ________________________________

> > From: Beth mbmurtha@

> > To: Breathe-Support

> > Sent: Tue, December 15, 2009 10:48:10 AM

> > Subject: Re: lung biopsy

> >

> >

> > Patti,

> > I would not call it a general consensus by any means. There is a wide

> variety of experiences and opinions here and very little in the way of

> agreement or consensus. That's what makes this decision so very

> difficult.

> > I had an open lung biopsy in June of 2006. The surgery itself was

> uneventful. My reaction to the pre-op sedation and the anesthesia was

> anything but. I recovered fairly easily from the biopsy and once the

> stiches were out I've never had so much as a twinge. If I had it to do

> over again, I would because I gained useful information. It's not just a

> matter of obsessively having to know what the label is. It's learning

> and understanding what I have in order to know what my options are.

> Perhaps if the biopsy just said UIP I would feel differently, I'll never

> know. But because I was diagnosed with NSIP we knew that prednisone was

> a reasonable option for me and proceeded accordingly. My biopsy results

> still have bearing on my treatment all this time later. If I had not had

> the biopsy and was treated as though I had IPF/UIP I probably wouldn't

> be here since the steroids halted the progression and eventually

> stablized me. So I have no regrets.

> >

> > I would not however tell anyone to do the same thing. You have to

> weigh the pros and cons for yourself. Take into consideration things

> like your current condition and stability, how certain is your current

> diagnosis, your surgeons experience, your anethesiologists experience

> with pf patients.... all these things factor in to a solid decision.

> >

> > Beth

> > Moderator

> > Fibrotic NSIP 06/06 Dermatomyositis 11/08

> >

> >

> >

> >

> >

> >

> > ________________________________

> > From: Patti Bruckman napa73 (AT) comcast (DOT) net>

> > To: Breathe-Support@ yahoogroups. com

> > Sent: Mon, December 14, 2009 10:47:07 PM

> > Subject: Re: lung biopsy

> >

> >

> > I thank everyone for all your comments concerning a surgical biopsy.

> It appears that the general consensus is that it often does not give any

> more information than the bronchoscope and perhaps not worth the risk.

> If they suggest this I certainly will voice my concerns.

> >

> > .......that is just terrible about your brother....I am so sorry.

> >

> >

> > Patti....IPF. ...2007

> >

>

[Guest guest]

Bruce, You are an inspiration. You gave me a lot to think about. Thanks Marcia

[Guest guest]

,

Thanks for posting these descriptions. I would only add that though the VATS is somewhat less invasive than the OLB, it is by no means minor or non-invasive.

Sometimes the doctors start out to do the VATS as they did in my case but for a variety of reasons abandon that course and end up doing an OLB.

Both biopsies are invasive thoracic surgery and should both be approached with caution. As I've said before I had a biopsy and if I had it to do over I would but it's a very individual decision.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Tue, December 15, 2009 10:00:03 PMSubject: Re: Re: lung biopsy

Patti,

Another thing to keep in mind when reading people's posts about their positive or not experiences with having a lung biopsy is that there are two types. My brother had the open lung biopsy and I think his lung disease was just too far advanced to recover from such a surgery.

OPEN LUNG BIOPSY. Open biopsies are performed in a hospital operating room under general anesthesia. Once the anesthesia has taken effect, the surgeon makes an incision over the lung area, a procedure called a thoracotomy. Some lung tissue is removed and the incision is closed with sutures. Chest tubes are placed with one end inside the lung and the other end protruding through the closed incision. Chest tubes are used to drain fluid and blood, and re-expand the lungs. They are usually removed the day after the procedure. The entire procedure normally takes about an hour. A chest x ray is performed immediately after the procedure to check for potential complications.

VIDEO-ASSISTED THORACOSCOPIC SURGERY. A minimally invasive technique, video-assisted thoracoscopic surgery (VATS) can be used to biopsy lung and mediastinal lesions. VATS may be performed on selected patients in place of open lung biopsy. While the patient is under general anesthetia, the surgeon makes several small incisions in the his or her chest wall. A thorascope, a thin, hollow, lighted tube with a tiny video camera mounted on it, is inserted through one of the small incisions. The other incisions allow the surgeon to insert special instruments to retrieve tissue for biopsy.

C_53_Familial IPF_5/09, Washington

HOPE doesn't disappoint!

> > > >> > I thank everyone for all your comments concerning a surgical biopsy. > It appears that the general consensus is that it often does not give any> more information than the bronchoscope and perhaps not worth the risk. > If they suggest this I certainly will voice my concerns.> >> > .......that is just terrible about your brother....I am so sorry.> >> >> > Patti....IPF. ...2007> >>