lung biopsy

[Guest guest]

Many of you have been talking about all the different forms of pf and

the quandry of whether or not to have the biopsy. I am right in

assuming that the only real way to tell what kind of pf you have is by

biopsy, right? My question to you is this, why does it make a

difference? Don has not had the biopsy so I can't testify to much

about it, except that Mayo said that they are finding out that people

don't recover from the biopsy very well. Is the treatment different

if you know what kind you have?

It is my understanding that there isn't much of a treatment anyway.

Correct? This question just wandered through my brain.

K

Central Illinois

[Guest guest]

Hi

I haven't had a biospy. As far as my chest physician is concerned, at the moment there is no real reason to find out the type of PF I have, so she doesn't see the point of an invasive proceedure. We already know that I respond to steroids, and that my PF is secondary to a connective tissue disease, so a biopsy wouldn't give us anything new.

Possibly in the early stages it might be useful for the docs to know exactly what type of PF you have.

Love Ze xx>> Many of you have been talking about all the different forms of pf and > the quandry of whether or not to have the biopsy. I am right in > assuming that the only real way to tell what kind of pf you have is by > biopsy, right? My question to you is this, why does it make a > difference? Don has not had the biopsy so I can't testify to much > about it, except that Mayo said that they are finding out that people > don't recover from the biopsy very well. Is the treatment different > if you know what kind you have?> It is my understanding that there isn't much of a treatment anyway. > Correct? This question just wandered through my brain. > K> Central Illinois>

[Guest guest]

thanks Zena, I just was wondering. K IllinoisZena wrote: Hi I haven't had a biospy. As far as my chest physician is concerned, at the moment there is no real reason to find out the type of PF I have, so she doesn't see the point of an invasive proceedure. We

already know that I respond to steroids, and that my PF is secondary to a connective tissue disease, so a biopsy wouldn't give us anything new. Possibly in the early stages it might be useful for the docs to know exactly what type of PF you have. Love Ze xx>> Many of you have been talking about all the different forms of pf and > the quandry of whether or not to have the biopsy. I am right in > assuming that the only real way to tell what kind of pf you have is by > biopsy, right? My question to you is this, why does it make a > difference? Don has not had the biopsy so I can't testify to much > about it, except that Mayo said that they are finding out that people > don't recover from

the biopsy very well. Is the treatment different > if you know what kind you have?> It is my understanding that there isn't much of a treatment anyway. > Correct? This question just wandered through my brain. > K> Central Illinois> K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14

between 0000-00-00 and 9999-99-99

[Guest guest]

Having a VATS is a very personal decision and you're right in asking

what you would do with the information once you had it. It might be

needed for clinical trials or transplant consideration or you might use

it to determine whether or not to take Imuran and Prednisone. That is

because many believe them to be more likely to have benefit with forms

of PF other than UIP.

Also, you have to consider general health and ability to handle the

biopsy and personal need to know. But, understand that even having a

VATS does not assure knowing.

VATS is a very invasive procedure even if relatively easy to perform.

They remove three pieces of your lung. People have reactions from very

mild to them having to switch midstream to an open biopsy to life

threatening. Most people have some pain after that typically may run up

to a year. Some have pain for three years or so. Pneumonia is a very

common problem after.

Also, many believe that they have immediately seen a jump in their

oxygen requirements after VATS and it hasn't rebounded from that. He is

doing smart by not just doing it because someone said he should. There

are many issues to consider. I'd suggest doing a search at the top of

this page and entering the term, VATS, and going back to see some

experiences.

Personally, I'm glad I did because I'm a need to know type and it made

my decision not to try prednisone easier. However, I did see a need for

more oxygen. I do believe that was short term and while I need more now

its the natural progression. I also got pneumonia later but caught it

quickly and was fine. Last, I do have pain if I twist wrong or hit the

wrong spot. So, its not like a trip to the doctor for a flu vaccine or

something. It's a significant surgery.

>

> Many of you have been talking about all the different forms of pf and

> the quandry of whether or not to have the biopsy. I am right in

> assuming that the only real way to tell what kind of pf you have is by

> biopsy, right? My question to you is this, why does it make a

> difference? Don has not had the biopsy so I can't testify to much

> about it, except that Mayo said that they are finding out that people

> don't recover from the biopsy very well. Is the treatment different

> if you know what kind you have?

> It is my understanding that there isn't much of a treatment anyway.

> Correct? This question just wandered through my brain.

> K

> Central Illinois

>

[Guest guest]

K... I'm going to jump in here one more time and repeat, what does DON want?

Fortunately the caregivers side is mostly about YOU and YOUR opinions/needs.

Here on this board we are more focused on DON...what questions is he asking? Are the two of you talking about this bio?

It's a tough decision........

Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there!

Re: lung biopsy

Having a VATS is a very personal decision and you're right in askingwhat you would do with the information once you had it. It might beneeded for clinical trials or transplant consideration or you might useit to determine whether or not to take Imuran and Prednisone. That isbecause many believe them to be more likely to have benefit with formsof PF other than UIP.Also, you have to consider general health and ability to handle thebiopsy and personal need to know. But, understand that even having aVATS does not assure knowing.VATS is a very invasive procedure even if relatively easy to perform.They remove three pieces of your lung. People have reactions from verymild to them having to switch midstream to an open biopsy to lifethreatening. Most people have some pain after that typically may run upto a year. Some have pain for three years or so. Pneumonia is a verycommon problem after.Also, many believe that they have immediately seen a jump in theiroxygen requirements after VATS and it hasn't rebounded from that. He isdoing smart by not just doing it because someone said he should. Thereare many issues to consider. I'd suggest doing a search at the top ofthis page and entering the term, VATS, and going back to see someexperiences.Personally, I'm glad I did because I'm a need to know type and it mademy decision not to try prednisone easier. However, I did see a need formore oxygen. I do believe that was short term and while I need more nowits the natural progression. I also got pneumonia later but caught itquickly and was fine. Last, I do have pain if I twist wrong or hit thewrong spot. So, its not like a trip to the doctor for a flu vaccine orsomething. It's a significant surgery.>> Many of you have been talking about all the different forms of pf and> the quandry of whether or not to have the biopsy. I am right in> assuming that the only real way to tell what kind of pf you have is by> biopsy, right? My question to you is this, why does it make a> difference? Don has not had the biopsy so I can't testify to much> about it, except that Mayo said that they are finding out that people> don't recover from the biopsy very well. Is the treatment different> if you know what kind you have?> It is my understanding that there isn't much of a treatment anyway.> Correct? This question just wandered through my brain.> K> Central Illinois>

[Guest guest]

Hi , I am not a nurse or doctor. At Don's age I would never have a Lung Biopsy. I was diagnosed with IPF in 2006. I had my lung biopsy in February. It confirmed IPF. I am 59 years old and for 5 more years still qualify for transplant. Also qualify for trials. But not if I hadn't had the Biopsy. At this point I'm not certain if I would have the biopsy knowing the results and pain and money associated with it.

I have very cold feet and legs also. Check Don's socks to make sure they are not to tight. If you see indentations in ankles or calves buy him bigger socks or better yet compression socks you see for diabetics and hospital use. We are very cold and damp here in the NW today and the only thing that guarantees relief for me is sunshine and 70's. Oh I do use a electric lap throw. I think Vickie gets them from JC Penny.

Thinking of Don Daily

Steve59 from WA IPF 2006

Reply-To: Breathe-Support To: Breathe-Support Subject: lung biopsyDate: Tue, 15 Apr 2008 20:29:24 -0000

Many of you have been talking about all the different forms of pf and the quandry of whether or not to have the biopsy. I am right in assuming that the only real way to tell what kind of pf you have is by biopsy, right? My question to you is this, why does it make a difference? Don has not had the biopsy so I can't testify to much about it, except that Mayo said that they are finding out that people don't recover from the biopsy very well. Is the treatment different if you know what kind you have?It is my understanding that there isn't much of a treatment anyway. Correct? This question just wandered through my brain. KCentral Illinois

[Guest guest]

thanks Steve. He has had 6 very bad days and is very depressed. K IllinoisSTEPHEN R WILSON wrote: Hi , I am not a nurse or doctor. At Don's age I would never have a Lung Biopsy. I was diagnosed with IPF in 2006. I had my lung biopsy in February. It confirmed IPF. I am 59 years old and for 5 more years still qualify for transplant. Also qualify for trials. But not if I hadn't had the Biopsy. At this point I'm not certain if I would have the biopsy

knowing the results and pain and money associated with it. I have very cold feet and legs also. Check Don's socks to make sure they are not to tight. If you see indentations in ankles or calves buy him bigger socks or better yet compression socks you see for diabetics and hospital use. We are very cold and damp here in the NW today and the only thing that guarantees relief for me is sunshine and 70's. Oh I do use a electric lap throw. I think Vickie gets them from JC Penny. Thinking of Don Daily Steve59 from WA IPF 2006 From: "l_kennelly" <l_kennelly>Reply-To: Breathe-Support To: Breathe-Support Subject: lung biopsyDate: Tue, 15 Apr 2008 20:29:24

-0000 Many of you have been talking about all the different forms of pf and the quandry of whether or not to have the biopsy. I am right in assuming that the only real way to tell what kind of pf you have is by biopsy, right? My question to you is this, why does it make a difference? Don has not had the biopsy so I can't testify to much about it, except that Mayo said that they are finding out that people don't recover from the biopsy very well. Is the treatment different if you know what kind you have?It is my understanding that there isn't much of a treatment anyway. Correct? This question just wandered through my brain. KCentral Illinois K Central Il Hubby ipf- 2006 As for me and my

house, we will serve the Lord 14

between 0000-00-00 and 9999-99-99

[Guest guest]

thanks Steve. He has had 6 very bad days and is very depressed. K IllinoisSTEPHEN R WILSON wrote: Hi , I am not a nurse or doctor. At Don's age I would never have a Lung Biopsy. I was diagnosed with IPF in 2006. I had my lung biopsy in February. It confirmed IPF. I am 59 years old and for 5 more years still qualify for transplant. Also qualify for trials. But not if I hadn't had the Biopsy. At this point I'm not certain if I would have the biopsy

knowing the results and pain and money associated with it. I have very cold feet and legs also. Check Don's socks to make sure they are not to tight. If you see indentations in ankles or calves buy him bigger socks or better yet compression socks you see for diabetics and hospital use. We are very cold and damp here in the NW today and the only thing that guarantees relief for me is sunshine and 70's. Oh I do use a electric lap throw. I think Vickie gets them from JC Penny. Thinking of Don Daily Steve59 from WA IPF 2006 From: "l_kennelly" <l_kennelly>Reply-To: Breathe-Support To: Breathe-Support Subject: lung biopsyDate: Tue, 15 Apr 2008 20:29:24

-0000 Many of you have been talking about all the different forms of pf and the quandry of whether or not to have the biopsy. I am right in assuming that the only real way to tell what kind of pf you have is by biopsy, right? My question to you is this, why does it make a difference? Don has not had the biopsy so I can't testify to much about it, except that Mayo said that they are finding out that people don't recover from the biopsy very well. Is the treatment different if you know what kind you have?It is my understanding that there isn't much of a treatment anyway. Correct? This question just wandered through my brain. KCentral Illinois K Central Il Hubby ipf- 2006 As for me and my

house, we will serve the Lord 14

between 0000-00-00 and 9999-99-99