Re: Sher's tests are in

[Guest guest]

Hi Sher,

When I had my lung bio, last April, I was supposed to have the VATS done. Well, when I woke up ( in the ost pain I have ever had in my life) I whispered to my husband, what did she ( the dr) do to me. He said I have to talk to you about that. I ended up having the full open lung biospy done. I guess my lymph nodes were so enlarged she couldn't get to them any other way. Now I'mn o wimp, I've had surgery for a blocked artery in my neck, 2 c sections, cancer surgery on my face but nothing compared to what I went thru with the lung one. I'm not trying to scare you, everyone reacts differently and handles it differently. I wasn't on a ventilator when I woke up but I did have a chest tube in which didn't hurt or bother me at all. It just hurt to breathe period. I was in the hosp 4 days and she took out the chest tube before i left. 5 days later it started to drain like mad, I had hand towels I was taping over the spot and soaking them in an hour but when I went to see her, she said it was normal. 3 weeks later I ended up back in the hosp with pneumonia. Would I do it again? Nope. Its also taken about 7 months for the pain to let up, I still have it occasionally but not as bad. My dr said it takes 6 months to 2 yrs to heal from lung surgery. I wish you the best........

Vicky81856

[Guest guest]

the bip really isn't all that bad. the only thing i didn't like about

mine was the fact no one informed us that the lung could and most

probably would collapse. so when i came out of recovery with a chest

tube my husband thought the worst had happened. and when i was

coherent enough to realize it was there, it scared the hell out of me

because i too did not know of that possibility. the tube actually

hurts worse than anything else. i only had mine a few days. most have

it only a few hours up to a day. depending on how long it takes to

get the lung reinflated.

now if i had to do a 2nd one, i wouldn't do it. as distressed as my

lungs already are, i don't think it would be worth it to put them in

any more distress.

EG 10-05

>

> Hey everyone.

> I need some input...my tests are all in (the ones taken by the Dr.

for a second opinion) they show no auto-immune problems, no

allergies, nothing I'm breathing. Not this and not that. Which is all

GOOD! However, Dr. still does not know what sort of pf I have. He

remains undecided on the 'idiopathic'.....

> My walking test shows sats of 94-96. Really good. He showed me the

Cat-scan that confirms pf. More in left lung.

> He wants to do a thoracic lung bio. That's the biggie I'm so scared

of. He wants to find out 'what' I have for certain and that is the

best way. I'm in fairly good health now to do it. He wants to rule

out I--pf so he can make a true dx.

> Those of you that have had this procedure please share with me your

opinion..... I know we are all different and I know there has been

previous posts about this but I can't remember who/what now.

> My pft shows some improvement in a couple areas and some decline in

another.

> Thanks. Sher

>

> " Don't worry about tomorrow, God is already there "

>

[Guest guest]

Sher,

It sounds like overall you got some good news today. Your walk test is particularly wonderful! I'm so happy for you! Is your doctor proposing a VATS biopsy?

I had an "open lung biopsy". I don't think this is what you're doctor is proposing so my experience probably isn't much help.

I had a very hard time with the surgery and anesthesia and the immediate post op period. Once I got past that my recovery was uneventful. I had my stiches out about 10 days after and haven't had any discomfort since. I think I had such a hard time initially partly because I was so very sick. You have the advantage of being in much better health than I was at the time. I did spend 5 days in the surgical ICU and was on a ventilator for 2 days. It was unpleasant, I won't kid you but.... The biopsy did provide the doctors with the information they needed to get a specific diagnosis of fibrotic NSIP. I'm glad I had it done and if I had it to do over, I would.

Love,

Beth Fibrotic NSIP 06/06

Don't try to explain it, just nod your head.

Breathe in, breathe out. Move on. J. Buffett

Sher's tests are in

Hey everyone.

I need some input...my tests are all in (the ones taken by the Dr. for a second opinion) they show no auto-immune problems, no allergies, nothing I'm breathing. Not this and not that. Which is all GOOD! However, Dr. still does not know what sort of pf I have. He remains undecided on the 'idiopathic' .....

My walking test shows sats of 94-96. Really good. He showed me the Cat-scan that confirms pf. More in left lung.

He wants to do a thoracic lung bio. That's the biggie I'm so scared of. He wants to find out 'what' I have for certain and that is the best way. I'm in fairly good health now to do it. He wants to rule out I--pf so he can make a true dx.

Those of you that have had this procedure please share with me your opinion..... I know we are all different and I know there has been previous posts about this but I can't remember who/what now.

My pft shows some improvement in a couple areas and some decline in another.

Thanks. Sher

"Don't worry about tomorrow, God is already there"

[Guest guest]

...if it's "expected" that a lung can/will collapse...what happens? Can you still breathe? Dr. said there would be a hole in the lung from tube and that's sewed up but will 'leak' for awhile.

How do you breathe after surgery? Are you attached to some breathing machine if there are holes in the chest? Do they go in from the back or side?

Dr. wants to do it now because I'm in pretty good condition for surgery.

Thanks . Sher

"Don't worry about tomorrow, God is already there"

Re: Sher's tests are in

the bip really isn't all that bad. the only thing i didn't like about mine was the fact no one informed us that the lung could and most probably would collapse. so when i came out of recovery with a chest tube my husband thought the worst had happened. and when i was coherent enough to realize it was there, it scared the hell out of me because i too did not know of that possibility. the tube actually hurts worse than anything else. i only had mine a few days. most have it only a few hours up to a day. depending on how long it takes to get the lung reinflated.now if i had to do a 2nd one, i wouldn't do it. as distressed as my lungs already are, i don't think it would be worth it to put them in any more distress. EG 10-05>> Hey everyone.> I need some input...my tests are all in (the ones taken by the Dr. for a second opinion) they show no auto-immune problems, no allergies, nothing I'm breathing. Not this and not that. Which is all GOOD! However, Dr. still does not know what sort of pf I have. He remains undecided on the 'idiopathic'.....> My walking test shows sats of 94-96. Really good. He showed me the Cat-scan that confirms pf. More in left lung.> He wants to do a thoracic lung bio. That's the biggie I'm so scared of. He wants to find out 'what' I have for certain and that is the best way. I'm in fairly good health now to do it. He wants to rule out I--pf so he can make a true dx.> Those of you that have had this procedure please share with me your opinion..... I know we are all different and I know there has been previous posts about this but I can't remember who/what now.> My pft shows some improvement in a couple areas and some decline in another.> Thanks. Sher> > "Don't worry about tomorrow, God is already there">

[Guest guest]

Beth...yes, he is planning on an open lung bio. The one where a lung can collapse and I guess usually does and has to reinflate.

What is being on a ventilator like? Does is breathe for you? Do you feel like you are being smothered?

Yes, he wants to do this because I am in good health now.

Thanks MB. I'm sure there will be more questions.

I just read online what the procedure is and the 'how' and stuff.

Sher

"Don't worry about tomorrow, God is already there"

Sher's tests are in

Hey everyone.

I need some input...my tests are all in (the ones taken by the Dr. for a second opinion) they show no auto-immune problems, no allergies, nothing I'm breathing. Not this and not that. Which is all GOOD! However, Dr. still does not know what sort of pf I have. He remains undecided on the 'idiopathic' .....

My walking test shows sats of 94-96. Really good. He showed me the Cat-scan that confirms pf. More in left lung.

He wants to do a thoracic lung bio. That's the biggie I'm so scared of. He wants to find out 'what' I have for certain and that is the best way. I'm in fairly good health now to do it. He wants to rule out I--pf so he can make a true dx.

Those of you that have had this procedure please share with me your opinion..... I know we are all different and I know there has been previous posts about this but I can't remember who/what now.

My pft shows some improvement in a couple areas and some decline in another.

Thanks. Sher

"Don't worry about tomorrow, God is already there"

[Guest guest]

Sher,

My biopsy was not easy. I was in CCU on Morphine for 9 days. But, I was extremely sick when they did it and there was some scraping procedure that was done so the recovery was painful. You seem to be doing pretty good so now could be a good time. It is the only way that they can get a definate diagnosis. As you know from our group, there are various form of PF. Some more treatable than others. I would not begin to give you advice about such a thing. But, for me, as rough as it was....I would do it again. I feel better knowing for sure. You will have to follow your heart and make your decision with your doc.

Hugs, Joyce PF 1997 Bronchiectasis 2004 INDIANA >> Hey everyone.> I need some input...my tests are all in (the ones taken by the Dr. for a second opinion) they show no auto-immune problems, no allergies, nothing I'm breathing. Not this and not that. Which is all GOOD! However, Dr. still does not know what sort of pf I have. He remains undecided on the 'idiopathic'.....> My walking test shows sats of 94-96. Really good. He showed me the Cat-scan that confirms pf. More in left lung.> He wants to do a thoracic lung bio. That's the biggie I'm so scared of. He wants to find out 'what' I have for certain and that is the best way. I'm in fairly good health now to do it. He wants to rule out I--pf so he can make a true dx.> Those of you that have had this procedure please share with me your opinion..... I know we are all different and I know there has been previous posts about this but I can't remember who/what now.> My pft shows some improvement in a couple areas and some decline in another.> Thanks. Sher> > "Don't worry about tomorrow, God is already there">

[Guest guest]

Sher, overall things sound pretty good. If the Open Lung biopsy is the ONLY process that rules out Idiopathic PF, then it might be worth the relief of knowing one way or another. I am still just learning how differently each kind of PF is treated. I'm assuming you already had the bronchoscopy done?

My biggest advice on the surgery is make sure you have family there pretty much 24/7, or at least dropping by at odd hours (including after "vising" hours) to insure you are getting attention around the clock.

My lung collapse happened weeks after I got out of the hospital. I was never told of the possability of a lung collapse and how important it was to do the breathing exercises. Please have a family member insist on a pulmonary rehab therapist consult BEFORE you leave the hospital. I didnt find out ( until a month later), what my o2 was suppose to be set at, that I should have been going to pulmo rehab before I left the hospital. LynnA

>> Hey everyone.> I need some input...my tests are all in (the ones taken by the Dr. for a second opinion) they show no auto-immune problems, no allergies, nothing I'm breathing. Not this and not that. Which is all GOOD! However, Dr. still does not know what sort of pf I have. He remains undecided on the 'idiopathic'.....> My walking test shows sats of 94-96. Really good. He showed me the Cat-scan that confirms pf. More in left lung.> He wants to do a thoracic lung bio. That's the biggie I'm so scared of. He wants to find out 'what' I have for certain and that is the best way. I'm in fairly good health now to do it. He wants to rule out I--pf so he can make a true dx.> Those of you that have had this procedure please share with me your opinion..... I know we are all different and I know there has been previous posts about this but I can't remember who/what now.> My pft shows some improvement in a couple areas and some decline in another.> Thanks. Sher> > "Don't worry about tomorrow, God is already there">

[Guest guest]

Sher;

I had what is called a vats ( video assisted thorasic surgery). This procedure is far less invasive. I had it done at 5:30 on a friday evening, was out at 7:30 the next morning and was back to work the following weds.. There was a minimal amount of pain that was easily handled by alleve. I know many people would advise against any procedure but it is the best way to get a definitive diagnosis.

Gordon ipf/uip 12/03

Sher's tests are in

Hey everyone.

I need some input...my tests are all in (the ones taken by the Dr. for a second opinion) they show no auto-immune problems, no allergies, nothing I'm breathing. Not this and not that. Which is all GOOD! However, Dr. still does not know what sort of pf I have. He remains undecided on the 'idiopathic'.....

My walking test shows sats of 94-96. Really good. He showed me the Cat-scan that confirms pf. More in left lung.

He wants to do a thoracic lung bio. That's the biggie I'm so scared of. He wants to find out 'what' I have for certain and that is the best way. I'm in fairly good health now to do it. He wants to rule out I--pf so he can make a true dx.

Those of you that have had this procedure please share with me your opinion..... I know we are all different and I know there has been previous posts about this but I can't remember who/what now.

My pft shows some improvement in a couple areas and some decline in another.

Thanks. Sher

"Don't worry about tomorrow, God is already there"

No virus found in this incoming message.Checked by AVG Free Edition.Version: 7.5.432 / Virus Database: 268.15.16/582 - Release Date: 12/11/2006 4:32 PM

[Guest guest]

http://mmcts.ctsnetjournals.org/cgi/content/full/2005/0121/mmcts.2004.000356 http://www.postgradmed.com/issues/1999/10_01_99/shrager.htm http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1234472 Hi Sher Here is a interesting read on a bio PSher K Bauman wrote: Hey everyone. I need some input...my tests are all in (the ones taken by the Dr. for a second opinion) they show no auto-immune problems, no allergies, nothing I'm breathing. Not this and not that. Which is all GOOD! However, Dr. still does not know what sort of pf I have. He remains undecided on the 'idiopathic'..... My walking test shows sats of 94-96. Really good. He showed me the Cat-scan that confirms pf. More in left lung. He wants to do a thoracic lung bio. That's the biggie I'm so scared of. He wants to find out 'what' I have for certain and that is the best way. I'm in fairly good health now to do it. He wants to rule out I--pf so he

can make a true dx. Those of you that have had this procedure please share with me your opinion..... I know we are all different and I know there has been previous posts about this but I can't remember who/what now. My pft shows some improvement in a couple areas and some decline in another. Thanks. Sher "Don't worry about tomorrow, God is already there"

Want to start your own business? Learn how on Yahoo! Small Business.

[Guest guest]

Hi Sher Is it a open lung or a VAT that has 3 tubes. Sent you stuff on Vat thoracic surgery I has a VAT 8/00. Lung did NOT collapse. On a tube up my nose the first day after Had a drainage tube in for three days. The Dr pulled it out in on swift pull ( about a foot long) Hurt a tad we hard core men can take it Got out on forth day the drainage keep me in hospital. When back to work that afternoon but couldn't lift anything for about 3 more days JOHN PSher K Bauman wrote: Beth...yes, he is planning on an open lung bio. The one where a lung can collapse and I guess usually does and has to reinflate. What is being on a ventilator like? Does is breathe for you? Do you feel like you are being smothered? Yes, he wants to do this because I am in good health now. Thanks MB. I'm sure there will be more questions. I just read online what the procedure is and the 'how' and stuff. Sher "Don't worry about tomorrow, God is already there" Sher's tests are in Hey everyone. I need some input...my tests are all in (the ones taken by the Dr. for a second opinion) they show no auto-immune problems, no allergies, nothing I'm breathing. Not this and not that. Which is all GOOD! However, Dr. still does not know what sort of pf I have. He remains undecided on the 'idiopathic' ..... My walking test shows sats of 94-96. Really good. He showed me the Cat-scan that confirms pf. More in left lung. He wants to do a thoracic lung bio. That's the biggie I'm so scared of. He wants to find out 'what' I have for certain and that is the best way. I'm in fairly good health now to do it. He wants to rule out I--pf so he can make a true dx.

Those of you that have had this procedure please share with me your opinion..... I know we are all different and I know there has been previous posts about this but I can't remember who/what now. My pft shows some improvement in a couple areas and some decline in another. Thanks. Sher "Don't worry about tomorrow, God is already there"

Have a burning question? Go to Yahoo! Answers and get answers from real people who know.

[Guest guest]

I had my lung bio at Duke University Hospital. No one told me about chest tubes or what to expect. Looking back, I guess I should have asked more questions. Anyway, the only real pain was from the chest tube. I was in the hospital for 4 days. Hospital would not release me until my O2 sats were above 90. Otherwise I think I could have gone home sooner. They went in through my side. The doctors needed a confirmation on what kind of fibrosing I had. Turned out to be Intersitial,non-specific. Would I do if again if necessary?

Yes....I wish you peace with whatever decision you make.

God bless you.

Re: Sher's tests are in

http://mmcts.ctsnetjournals.org/cgi/content/full/2005/0121/mmcts.2004.000356

http://www.postgradmed.com/issues/1999/10_01_99/shrager.htm

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1234472

Hi Sher Here is a interesting read on a bio PSher K Bauman <bofuswbcable (DOT) net> wrote:

Hey everyone.

I need some input...my tests are all in (the ones taken by the Dr. for a second opinion) they show no auto-immune problems, no allergies, nothing I'm breathing. Not this and not that. Which is all GOOD! However, Dr. still does not know what sort of pf I have. He remains undecided on the 'idiopathic'.....

My walking test shows sats of 94-96. Really good. He showed me the Cat-scan that confirms pf. More in left lung.

He wants to do a thoracic lung bio. That's the biggie I'm so scared of. He wants to find out 'what' I have for certain and that is the best way. I'm in fairly good health now to do it. He wants to rule out I--pf so he can make a true dx.

Those of you that have had this procedure please share with me your opinion..... I know we are all different and I know there has been previous posts about this but I can't remember who/what now.

My pft shows some improvement in a couple areas and some decline in another.

Thanks. Sher

"Don't worry about tomorrow, God is already there"

Want to start your own business? Learn how on Yahoo! Small Business.

[Guest guest]

Sher, I had the open lung biopsy and I had no problems after the doc came and found out that they had not opened up the drainage tube. Man he got highly ticked off with the nurse and her excuse was well she didn't know that he wanted it open since she wasn't the one that brought me up from Recovery. My daughter said that when he got her out in the hall way he let her have it about how I could have gotten pneumonia or possibly drown because that tube wasn't opened. He told my daughter that it was amazing that I was doing so good. That had he not done the procedure himself he would not have known I had had anything done. I give the praise to God because there were a lot of prayers going up for me that morning. I know that we all are different but I just beleive in my heart that you will be fine. Just hold off until after the Christmas Holiday. Please keep us posted on what you deside to do. You will be in my prayers and I know that you will make the best decision for you.

Hugs and Prayers!

Barbara R IPF 1/2003

> Hey everyone.> I need some input...my tests are all in (the ones taken by the Dr. for a second opinion) they show no auto-immune problems, no allergies, nothing I'm breathing. Not this and not that. Which is all GOOD! However, Dr. still does not know what sort of pf I have. He remains undecided on the 'idiopathic'.....> My walking test shows sats of 94-96. Really good. He showed me the Cat-scan that confirms pf. More in left lung.> He wants to do a thoracic lung bio. That's the biggie I'm so scared of. He wants to find out 'what' I have for certain and that is the best way. I'm in fairly good health now to do it. He wants to rule out I--pf so he can make a true dx.> Those of you that have had this procedure please share with me your opinion..... I know we are all different and I know there has been previous posts about this but I can't remember who/what now.> My pft shows some improvement in a couple areas and some decline in another.> Thanks. Sher> > "Don't worry about tomorrow, God is already there"> > > > > ------------------------------------------------------------------------------> Want to start your own business? Learn how on Yahoo! Small Business.>

[Guest guest]

My lung biopsy was in August of 2005 at the Abington Hospital in a

Philadelphia suburb..It was supposed to be laproscopic...it turned out

to be an open lung biopsy instead.

(Something about my airway being a problem) Anyway...the worst was the

chest tube that I had been warned about. The pain lessened remarkably

after it was removed on the fourth day. Recovering from the surgery was

uneventful.. painful but managable,.and I did at least get a diagnosis

NSIP. and was then referred to the University of Pennsylvania Lung

Center. I also wish you luck. I also wish that I had known about this

group a long time ago...you have all been so welcoming and helpful

already.

lentz wrote:

> I had my lung bio at Duke University Hospital. No one told me about

> chest tubes or what to expect. Looking back, I guess I should have

> asked more questions. Anyway, the only real pain was from the chest

> tube. I was in the hospital for 4 days. Hospital would not release

> me until my O2 sats were above 90. Otherwise I think I could have

> gone home sooner. They went in through my side. The doctors needed a

> confirmation on what kind of fibrosing I had. Turned out to be

> Intersitial,non-specific. Would I do if again if necessary?

> Yes....I wish you peace with whatever decision you make.

> God bless you.

>

>

> * Re: Sher's tests are in

>

>

http://mmcts.ctsnetjournals.org/cgi/content/full/2005/0121/mmcts.2004.000356

>

<http://mmcts.ctsnetjournals.org/cgi/content/full/2005/0121/mmcts.2004.000356>

>

> http://www.postgradmed.com/issues/1999/10_01_99/shrager.htm

> <http://www.postgradmed.com/issues/1999/10_01_99/shrager.htm>

>

> http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1234472

> <http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1234472>

>

> Hi Sher Here is a interesting read on a bio P

>

> */Sher K Bauman >/*

> wrote:

>

> /Hey everyone./

> /I need some input...my tests are all in (the ones taken by

> the Dr. for a second opinion) they show no auto-immune

> problems, no allergies, nothing I'm breathing. Not this and

> not that. Which is all GOOD! However, Dr. still does not know

> what sort of pf I have. He remains undecided on the

> 'idiopathic'...../

> /My walking test shows sats of 94-96. Really good. He showed

> me the Cat-scan that confirms pf. More in left lung./

> /He wants to do a thoracic lung bio. That's the biggie I'm so

> scared of. He wants to find out 'what' I have for certain and

> that is the best way. I'm in fairly good health now to do it.

> He wants to rule out I--pf so he can make a true dx./

> /Those of you that have had this procedure please share with

> me your opinion..... I know we are all different and I know

> there has been previous posts about this but I can't remember

> who/what now./

> /My pft shows some improvement in a couple areas and some

> decline in another./

> /Thanks. Sher/

> //

> / " Don't worry about tomorrow, God is already there " /

>

>

> ------------------------------------------------------------------------

> Want to start your own business? Learn how on Yahoo! Small

> Business.

> <http://us.rd.yahoo.com/evt=41244/*http://smallbusiness.yahoo.com/r-index>

>

>

>

>

>------------------------------------------------------------------------

>

>No virus found in this incoming message.

>Checked by AVG Free Edition.

>Version: 7.1.409 / Virus Database: 268.15.16/582 - Release Date: 12/11/2006

>

>

>

[Guest guest]

Sher, I wasn't attached to anything except the drainage bag for the chest tube. Like I said earlier I did great but, I have heard a lot of horror stories. I was in the hospital for 3 days and I haven't had any problems during the last 4 years. Just do what you feel is best for you.

Hugs and Prayers!

Barbara R IPF 1/2003> >> > Hey everyone.> > I need some input...my tests are all in (the ones taken by the Dr. > for a second opinion) they show no auto-immune problems, no > allergies, nothing I'm breathing. Not this and not that. Which is all > GOOD! However, Dr. still does not know what sort of pf I have. He > remains undecided on the 'idiopathic'.....> > My walking test shows sats of 94-96. Really good. He showed me the > Cat-scan that confirms pf. More in left lung.> > He wants to do a thoracic lung bio. That's the biggie I'm so scared > of. He wants to find out 'what' I have for certain and that is the > best way. I'm in fairly good health now to do it. He wants to rule > out I--pf so he can make a true dx.> > Those of you that have had this procedure please share with me your > opinion..... I know we are all different and I know there has been > previous posts about this but I can't remember who/what now.> > My pft shows some improvement in a couple areas and some decline in > another.> > Thanks. Sher> > > > "Don't worry about tomorrow, God is already there"> >>

[Guest guest]

I had the VATs procedure where they put two tubes down your throat. One is to keep the non-biopsied lung open and full of oxygen, the other tube is to deflate the other lung so they can take biopsy specimens from it and then reinflate it. They took several samples from different areas and put two chest tubes in. The only problem I had was I am on large morphine doses anyway for chronic pain problems and so was not given my regular pain medication the first day so suffered with a lot of pain. Had I been given my regular morphine dose, I would have had much less pain. It hurt a lot to move the first day, was less uncomfortable the second day and on the third day they took out the tubes and I was up walking. I did not even feel the chest tubes come out. I went home on the fourth day. Would I do it again. Yes, it brought me a better diagnosis than I thought I was going to get. Carolyn

lentz wrote: I had my lung bio at Duke University Hospital. No one told me about chest tubes or what to expect. Looking back, I guess I should have asked more questions. Anyway, the only real pain was from the chest tube. I was in the hospital for 4 days. Hospital would not release me until my O2 sats were above 90. Otherwise I think I could have gone home sooner. They went in through my side. The doctors needed a confirmation on what kind of fibrosing I had. Turned out to be Intersitial,non-specific. Would I do if again if necessary? Yes....I wish you peace with whatever decision you make. God bless you. Re: Sher's tests are in http://mmcts.ctsnetjournals.org/cgi/content/full/2005/0121/mmcts.2004.000356 http://www.postgradmed.com/issues/1999/10_01_99/shrager.htm http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1234472 Hi Sher Here is a interesting read on a bio PSher K Bauman <bofuswbcable (DOT) net> wrote: Hey everyone. I need some input...my tests are all in (the ones taken by the Dr. for a second opinion) they show no auto-immune problems, no allergies, nothing I'm breathing. Not this and not that. Which is all GOOD! However, Dr. still does not know what sort of pf I have. He remains undecided on the 'idiopathic'..... My walking test shows sats of 94-96. Really good. He showed me the Cat-scan that confirms pf. More in left lung. He wants to do a thoracic lung bio. That's the biggie I'm so scared of. He wants to find out 'what' I have for certain and that is the best way. I'm in fairly good health now to do it. He wants to rule out I--pf so he can make a true dx. Those of you that have had this procedure please share with me your opinion..... I know we are all different and I know

there has been previous posts about this but I can't remember who/what now. My pft shows some improvement in a couple areas and some decline in another. Thanks. Sher "Don't worry about tomorrow, God is already there" Want to start your own business? Learn how on Yahoo! Small Business.

[Guest guest]

Sher,

Sorry I didn't answer last night. We lost our internet for awhile.

When I was rolled into surgery I had expected that I was having the VATS biopsy, it turned out however that they did the open lung biopsy when the lung collapsed and then the anesthesiologist had a hard time intubating me. According to what my mom and sister said afterwards the doctors were looking a little pale when they came out to talk to my family. My sister says I made them work for their money.

I was told in advance that I would have a chest tube for several days so that was no surprise. The surgery virtually always causes a pneumothorax (lung collapse) and they need the tube there to remove fluid and air from the space between the lung and chest wall to give the lung the space it needs to "reinflate". Once that happens they remove the tube.

I have little memory of most of my time on the ventilator. I guess because of the effects of the anesthesia. They've since told me that one of the drugs they gave me was an "amnesiac" meaning it would cause me to not remember anything. This is probably a blessing. I do remember the day they took me off the vent. It was an odd sensation having the machine "assist" me in breathing but not painful or unpleasant, just odd. I was able to take breaths on my own but the vent would every so often "help" me. I remember those breaths being bigger and deeper.

They had me on an iv of course and had one of those pain med pumps where all I had to do was push the button and I got a small dose of pain med. I used that some for a day or so and after that they gave me percocet. Honestly the percocet worked better for me. I don't remember taking anything for pain after the 4th day or so. I do know however that most people have pain for much longer than I did.

Like I said, if I had it to do over again, I would. That probaby sounds crazy. It wasn't fun but I feel like the information that came out of it was worth it for me.

It's a tough decision and not one I could make for anyone else. You never know how another persons body is going to react to surgery and anesthesia. I'll be praying no matter what!!! God bless you Sher!

Beth Fibrotic NSIP 06/06

Don't try to explain it, just nod your head.

Breathe in, breathe out. Move on. J. Buffett

Sher's tests are in

Hey everyone.

I need some input...my tests are all in (the ones taken by the Dr. for a second opinion) they show no auto-immune problems, no allergies, nothing I'm breathing. Not this and not that. Which is all GOOD! However, Dr. still does not know what sort of pf I have. He remains undecided on the 'idiopathic' .....

My walking test shows sats of 94-96. Really good. He showed me the Cat-scan that confirms pf. More in left lung.

He wants to do a thoracic lung bio. That's the biggie I'm so scared of. He wants to find out 'what' I have for certain and that is the best way. I'm in fairly good health now to do it. He wants to rule out I--pf so he can make a true dx.

Those of you that have had this procedure please share with me your opinion..... I know we are all different and I know there has been previous posts about this but I can't remember who/what now.

My pft shows some improvement in a couple areas and some decline in another.

Thanks. Sher

"Don't worry about tomorrow, God is already there"

[Guest guest]

Joyce...thanks for the info. Yes, it's a tough decision for me because this is the one thing I've been especially fearful of...why, I don't know. Well, other than what it is!

Yes, right now, I'm doing quite well. Even a bit of an improvement...I'm not on any oxygen currently and my sats were at 94-96 after a 6 min. walk. Maybe God is keeping me strong for this....???....

Without it, there is NO treatment. Hence the name idiopathic I suppose...no cause...no treatment.

Dr. wants to know what we are dealing with. Bless his little pointed head. lol

Sher

"Don't worry about tomorrow, God is already there"

Re: Sher's tests are in

Sher,

My biopsy was not easy. I was in CCU on Morphine for 9 days. But, I was extremely sick when they did it and there was some scraping procedure that was done so the recovery was painful. You seem to be doing pretty good so now could be a good time. It is the only way that they can get a definate diagnosis. As you know from our group, there are various form of PF. Some more treatable than others. I would not begin to give you advice about such a thing. But, for me, as rough as it was....I would do it again. I feel better knowing for sure. You will have to follow your heart and make your decision with your doc.

Hugs, Joyce PF 1997 Bronchiectasis 2004 INDIANA >> Hey everyone.> I need some input...my tests are all in (the ones taken by the Dr. for a second opinion) they show no auto-immune problems, no allergies, nothing I'm breathing. Not this and not that. Which is all GOOD! However, Dr. still does not know what sort of pf I have. He remains undecided on the 'idiopathic'.....> My walking test shows sats of 94-96. Really good. He showed me the Cat-scan that confirms pf. More in left lung.> He wants to do a thoracic lung bio. That's the biggie I'm so scared of. He wants to find out 'what' I have for certain and that is the best way. I'm in fairly good health now to do it. He wants to rule out I--pf so he can make a true dx.> Those of you that have had this procedure please share w! ith me your opinion..... I know we are all different and I know there has been previous posts about this but I can't remember who/what now.> My pft shows some improvement in a couple areas and some decline in another.> Thanks. Sher> > "Don't worry about tomorrow, God is already there">

[Guest guest]

Armede...No, I have not had the bronchoscopy. Since the blood work Dr. did ruled OUT so many variables, he wants to be certain-sure now. My C-scans show clearly PF.

Are you telling me you had this trouble from the Bronc or did you also have the open lung procedure?

Thanks for the heads up on the other things. Was your Dr. negligent in informing you of what you needed to know????

Thanks. Sher

"Don't worry about tomorrow, God is already there"

Re: Sher's tests are in

Sher, overall things sound pretty good. If the Open Lung biopsy is the ONLY process that rules out Idiopathic PF, then it might be worth the relief of knowing one way or another. I am still just learning how differently each kind of PF is treated. I'm assuming you already had the bronchoscopy done?

My biggest advice on the surgery is make sure you have family there pretty much 24/7, or at least dropping by at odd hours (including after "vising" hours) to insure you are getting attention around the clock.

My lung collapse happened weeks after I got out of the hospital. I was never told of the possability of a lung collapse and how important it was to do the breathing exercises. Please have a family member insist on a pulmonary rehab therapist consult BEFORE you leave the hospital. I didnt find out ( until a month later), what my o2 was suppose to be set at, that I should have been going to pulmo rehab before I left the hospital. LynnA

>> Hey everyone.> I need some input...my tests are all in (the ones taken by the Dr. for a second opinion) they show no auto-immune problems, no allergies, nothing I'm breathing. Not this and not that. Which is all GOOD! However, Dr. still does not know what sort of pf I have. He remains undecided on the 'idiopathic'.....> My walking test shows sats of 94-96. Really good. He showed me the Cat-scan that confirms pf. More in left lung.> He wants to do a thoracic lung bio. That's the biggie I'm so scared of. He wants to find out 'what' I have for certain and that is the best way. I'm in fairly good health now to do it. He wants to rule out I--pf so he can make a true dx.> Those of you that have had this procedure please share with me your opinion..... I know we are all different and I know there has been previous posts about this but I ca! n't remember who/what now.> My pft shows some improvement in a couple areas and some decline in another.> Thanks. Sher> > "Don't worry about tomorrow, God is already there">

[Guest guest]

Thanks Gordon...lots for me to think about. I'm soooooo grateful for the board. Where else can we get such candid information?

My Dr. is good to answer questions but I can see by the recent posts re: olbio that I don't know the questions!

Hope all is well in your corner today.

Sher

"Don't worry about tomorrow, God is already there"

Sher's tests are in

Hey everyone.

I need some input...my tests are all in (the ones taken by the Dr. for a second opinion) they show no auto-immune problems, no allergies, nothing I'm breathing. Not this and not that. Which is all GOOD! However, Dr. still does not know what sort of pf I have. He remains undecided on the 'idiopathic'.....

My walking test shows sats of 94-96. Really good. He showed me the Cat-scan that confirms pf. More in left lung.

He wants to do a thoracic lung bio. That's the biggie I'm so scared of. He wants to find out 'what' I have for certain and that is the best way. I'm in fairly good health now to do it. He wants to rule out I--pf so he can make a true dx.

Those of you that have had this procedure please share with me your opinion..... I know we are all different and I know there has been previous posts about this but I can't remember who/what now.

My pft shows some improvement in a couple areas and some decline in another.

Thanks. Sher

"Don't worry about tomorrow, God is already there"

No virus found in this incoming message.Checked by AVG Free Edition.Version: 7.5.432 / Virus Database: 268.15.16/582 - Release Date: 12/11/2006 4:32 PM

[Guest guest]

Vicky...I've heard "Be careful what you ask for, you might get it." Wow. I'm so sorry you had such a hard time, but I did ask...............

I will take all this info to my Dr. and have a further discussion.

If I decide "NO" then I'm gaining nothing however. The one thing in my favor is that I am in pretty good condition now.

Thanks Vicky. Sher ipf 5-06

"Don't worry about tomorrow, God is already there"

Re: Sher's tests are in

Hi Sher,

When I had my lung bio, last April, I was supposed to have the VATS done. Well, when I woke up ( in the ost pain I have ever had in my life) I whispered to my husband, what did she ( the dr) do to me. He said I have to talk to you about that. I ended up having the full open lung biospy done. I guess my lymph nodes were so enlarged she couldn't get to them any other way. Now I'mn o wimp, I've had surgery for a blocked artery in my neck, 2 c sections, cancer surgery on my face but nothing compared to what I went thru with the lung one. I'm not trying to scare you, everyone reacts differently and handles it differently. I wasn't on a ventilator when I woke up but I did have a chest tube in which didn't hurt or bother me at all. It just hurt to breathe period. I was in the hosp 4 days and she took out the chest tube before i left. 5 days later it started to drain like mad, I had hand towels I was taping over the spot and soaking them in an hour but when I went to see her, she said it was normal. 3 weeks later I ended up back in the hosp with pneumonia. Would I do it again? Nope. Its also taken about 7 months for the pain to let up, I still have it occasionally but not as bad. My dr said it takes 6 months to 2 yrs to heal from lung surgery. I wish you the best........

Vicky81856

[Guest guest]

Dr. did speak of "three tubes"...

Thanks for your post. I will read the web sites a little later.

Seems everyone has a different experience.

Take care. Sher ipf 5-06

"Don't worry about tomorrow, God is already there"

Sher's tests are in

Hey everyone.

I need some input...my tests are all in (the ones taken by the Dr. for a second opinion) they show no auto-immune problems, no allergies, nothing I'm breathing. Not this and not that. Which is all GOOD! However, Dr. still does not know what sort of pf I have. He remains undecided on the 'idiopathic' .....

My walking test shows sats of 94-96. Really good. He showed me the Cat-scan that confirms pf. More in left lung.

He wants to do a thoracic lung bio. That's the biggie I'm so scared of. He wants to find out 'what' I have for certain and that is the best way. I'm in fairly good health now to do it. He wants to rule out I--pf so he can make a true dx.

Those of you that have had this procedure please share with me your opinion..... I know we are all different and I know there has been previous posts about this but I can't remember who/what now.

My pft shows some improvement in a couple areas and some decline in another.

Thanks. Sher

"Don't worry about tomorrow, God is already there"

Have a burning question? Go to Yahoo! Answers and get answers from real people who know.

[Guest guest]

Thanks ...all you good folks out there pray for me....I will know what to do when the time comes.

Love, Sher ipf 5-06

"Don't worry about tomorrow, God is already there"

Re: Sher's tests are in

http://mmcts.ctsnetjournals.org/cgi/content/full/2005/0121/mmcts.2004.000356

http://www.postgradmed.com/issues/1999/10_01_99/shrager.htm

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1234472

Hi Sher Here is a interesting read on a bio PSher K Bauman <bofuswbcable (DOT) net> wrote:

Hey everyone.

I need some input...my tests are all in (the ones taken by the Dr. for a second opinion) they show no auto-immune problems, no allergies, nothing I'm breathing. Not this and not that. Which is all GOOD! However, Dr. still does not know what sort of pf I have. He remains undecided on the 'idiopathic'.....

My walking test shows sats of 94-96. Really good. He showed me the Cat-scan that confirms pf. More in left lung.

He wants to do a thoracic lung bio. That's the biggie I'm so scared of. He wants to find out 'what' I have for certain and that is the best way. I'm in fairly good health now to do it. He wants to rule out I--pf so he can make a true dx.

Those of you that have had this procedure please share with me your opinion..... I know we are all different and I know there has been previous posts about this but I can't remember who/what now.

My pft shows some improvement in a couple areas and some decline in another.

Thanks. Sher

"Don't worry about tomorrow, God is already there"

Want to start your own business? Learn how on Yahoo! Small Business.

[Guest guest]

Thanks to you too Barbara...yes, I will wait until after the holidays if I do this. I'm also changing from HealthNet to Regence BCBS and I want that to be in place also.

Kinda-sorta feels like hell if I do and hell if I don't. I do want to know what I have and it's natural to want also to know, how I got it and how do we treat it. Those answers are not available right now.

Love, Sher

"Don't worry about tomorrow, God is already there"

Re: Sher's tests are in

Sher, I had the open lung biopsy and I had no problems after the doc came and found out that they had not opened up the drainage tube. Man he got highly ticked off with the nurse and her excuse was well she didn't know that he wanted it open since she wasn't the one that brought me up from Recovery. My daughter said that when he got her out in the hall way he let her have it about how I could have gotten pneumonia or possibly drown because that tube wasn't opened. He told my daughter that it was amazing that I was doing so good. That had he not done the procedure himself he would not have known I had had anything done. I give the praise to God because there were a lot of prayers going up for me that morning. I know that we all are different but I just beleive in my heart that you will be fine. Just hold off until after the Christmas Holiday. Please keep us posted on what you deside to do. You will be in my prayers and! I know that you will make the best decision for you.

Hugs and Prayers!

Barbara R IPF 1/2003

> Hey everyone.> I need some input...my tests are all in (the ones taken by the Dr. for a second opinion) they show no auto-immune problems, no allergies, nothing I'm breathing. Not this and not that. Which is all GOOD! However, Dr. still does not know what sort of pf I have. He remains undecided on the 'idiopathic'.....> My walking test shows sats of 94-96. Really good. He showed me the Cat-scan that confirms pf. More in left lung.> He wants to do a thoracic lung bio. That's the biggie I'm so scared of. He wants! to find out 'what' I have for certain and that is the best way. I'm in fairly good health now to do it. He wants to rule out I--pf so he can make a true dx.> Those of you that have had this procedure please share with me your opinion..... I know we are all different and I know there has been previous posts about this but I can't remember who/what now.> My pft shows some improvement in a couple areas and some decline in another.> Thanks. Sher> > "Don't worry about tomorrow, God is already there"> > > > > ------------------------------------------------------------------------------> Want to start your own business? Learn how on Yahoo! Small Business.>

[Guest guest]

Barbara...that is why I'm asking for prayer...I will know what to do and I will do well if I do it.

Sher

"Don't worry about tomorrow, God is already there"

Re: Sher's tests are in

Sher, I wasn't attached to anything except the drainage bag for the chest tube. Like I said earlier I did great but, I have heard a lot of horror stories. I was in the hospital for 3 days and I haven't had any problems during the last 4 years. Just do what you feel is best for you.

Hugs and Prayers!

Barbara R IPF 1/2003> >> > Hey everyone.> > I need some! input...my tests are all in (the ones taken by the Dr. > for a second opinion) they show no auto-immune problems, no > allergies, nothing I'm breathing. Not this and not that. Which is all > GOOD! However, Dr. still does not know what sort of pf I have. He > remains undecided on the 'idiopathic'.....> > My walking test shows sats of 94-96. Really good. He showed me the > Cat-scan that confirms pf. More in left lung.> > He wants to do a thoracic lung bio. That's the biggie I'm so scared > of. He wants to find out 'what' I have for certain and that is the > best way. I'm in fairly good health now to do it. He wants to rule > out I--pf so he can make a true dx.> > Those of you that have had this procedure please share with me your > opinion..... I know we are all different and I know there has been > previous posts about this but I can't remember who/what now.> > My! pft shows some improvement in a couple areas and some decline in > another.> > Thanks. Sher> > > > "Don't worry about tomorrow, God is already there"> >>

[Guest guest]

Thanks for your reply too. All posts are helping me. Sher

"Don't worry about tomorrow, God is already there"

* Re: Sher's tests are in>> http://mmcts.ctsnetjournals.org/cgi/content/full/2005/0121/mmcts.2004.000356> <http://mmcts.ctsnetjournals.org/cgi/content/full/2005/0121/mmcts.2004.000356>> > http://www.postgradmed.com/issues/1999/10_01_99/shrager.htm> <http://www.postgradmed.com/issues/1999/10_01_99/shrager.htm>> > http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1234472> <http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1234472>> > Hi Sher Here is a interesting read on a bio P>> */Sher K Bauman <bofuswbcable (DOT) net <mailto:bofuswbcable (DOT) net>>/*> wrote:>> /Hey everyone./> /I need some input...my tests are all in (the ones taken by> the Dr. for a second opinion) they show no auto-immune> problems, no allergies, nothing I'm breathing. Not this and> not that. Which is all GOOD! However, Dr. still does not know> what sort of pf I have. He remains undecided on the> 'idiopathic'...../> /My walking test shows sats of 94-96. Really good. He showed> me the Cat-scan that confirms pf. More in left lung./> /He wants to do a thoracic lung bio. That's the biggie I'm so> scared of. He wants to find out 'what' I have for certain and> that is the best way. I'm in fairly good health now to do it.> He wants to rule out I--pf so he can make a true dx./> /Those of you that have had this procedure please share with> me your opinion..... I know we are all different and I know> there has been previous posts about this but I can't remember> who/what now./> /My pft shows some improvement in a couple areas and some> decline in another./> /Thanks. Sher/> // > /"Don't worry about tomorrow, God is already there"/>>> ----------------------------------------------------------> Want to start your own business? Learn how on Yahoo! Small> Business.> <http://us.rd.yahoo.com/evt=41244/*http://smallbusiness.yahoo.com/r-index>>>> >>---------------------------------------------------------->>No virus found in this incoming message.>Checked by AVG Free Edition.>Version: 7.1.409 / Virus Database: 268.15.16/582 - Release Date: 12/11/2006>> >