Re: Biopsy

[Guest guest]

Leanne...thanks so much for your post and also the conversation we just had. Good to talk to you 'in person'.

I'm beginning to waver on this OLbio. Since there is no cure for pf what is accomplished by knowing "what" there is no cure for?

If Prednisone is the typical treatment, I'm not receptive to that either! I've listened and listened well to those of you here who do not recommend this treatment and why.

For those of you who responded to my request for info. re: OLbio....what treatment followed the OLbio you had and is it helping?

MB, you said you would do it again but what information/treatment was so revealing that you would, do it again?

I'm stuck. Even if we know what we have but there is no treatment what good is the knowledge?????

Love to all. Sher ipf 5-06

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

Biopsy

Hi Sher, Did you ask your Dr. What he is looking for exactly?? and HOW willit change your treatment??I did, the biopsy was to tell what kind of pf and the treatment wouldn't beany different. I am not into being a guinea pig for nothing. We already knowthere is no treatment to kill this monster. So Please pray long and hardbefore you make this decision. Also know I will be praying for you.I sure do miss all this action. Who was booted and WHY ??? ya know it'seatin at me..Love to each and every one.Lord be with Nick and today..Peggy

[Guest guest]

Peggy...I think there are people who are noble and want to 'further the cause'. I am not one of them. Perhaps if I did not have so many existing chronic conditions I may be more receptive. I 'm beginning to NOT wanting to be a guinea-pig to give information to the medical field and not be of much help to me.

Looks like I've made my decision here...I don't think I will do this OLbio. The odds do not appear to be in my favor and I refuse to take a chance on having any lingering problems to add to what I have.

So. There now!

Hear me talk!

lol. Sher ipf 5-06

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

Biopsy

Hi Sher, Did you ask your Dr. What he is looking for exactly?? and HOW willit change your treatment??I did, the biopsy was to tell what kind of pf and the treatment wouldn't beany different. I am not into being a guinea pig for nothing. We already knowthere is no treatment to kill this monster. So Please pray long and hardbefore you make this decision. Also know I will be praying for you.I sure do miss all this action. Who was booted and WHY ??? ya know it'seatin at me..Love to each and every one.Lord be with Nick and today..Peggy

[Guest guest]

Sher,

Due to the information from the biopsy and the HRCT my diagnosis was changed from IPF to Fibrotic NSIP. My life expectancy went from 2-4 years to 5-8 years. That had a significant psychological effect on me. It means with a lung transplant I could conceivably live to be nearly 60. That's huge for me. Don't misunderstand. I know that God is ultimately in charge of my time here and I could get hit by a bus tomorrow morning and be in heaven by noon. (Well I can hope, can't I??? )

It gave me the hope that I have some time. Time to lose the weight I need to lose to qualify for a lung transplant. More importantly time to spend with my family and friends. Time to hopefully see my son get his act together and his life on track. Maybe even time for me to see a grandchild...how amazing would that be?

Maybe I'm just the kind of person that wants information. It's always been easier for me to live with an unpleasant answer than a threatening unknown. It's like I used to tell my son, nothing scares me more than what you won't tell me. Just tell me the truth, I'll put on my big girl panties and cope.

Has my treatment changed....? Well, yes it has. Because steroids only seem to help my disease stablize initially, I'm being weaned off the prednisone since I've already received any benefit that I will. The doctors also decided to start me on Advair 250/50 to see if it helps the cough as I'm being weaned off the pred.

That's my story girl and I'm stickin to it. Only you know what will work for Sher. Ask some pointed questions of you doctor, pray and then listen to your heart.

Love and hugs!

Beth Fibrotic NSIP 06/06

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

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

Biopsy

Hi Sher, Did you ask your Dr. What he is looking for exactly?? and HOW willit change your treatment??I did, the biopsy was to tell what kind of pf and the treatment wouldn't beany different. I am not into being a guinea pig for nothing. We already knowthere is no treatment to kill this monster. So Please pray long and hardbefore you make this decision. Also know I will be praying for you.I sure do miss all this action. Who was booted and WHY ??? ya know it'seatin at me..Love to each and every one.Lord be with Nick and today..Peggy

[Guest guest]

Sher, Let me throw in my two cents about the biopsy. I was diagnosed with IPF in March,06 and after a HRcat scan my pulmonologist told me it wasn't clear enough as to the type I had and I needed to have a lung b iopsy to see what kind of fibrosis I had and to see if I should be treated with prednisone. I didn't know quite how major a surgery it was and since I didn't and don't want to take prednisone for NO reason so I had a biopsy in mid April. I am like you and still in pretty good health and I got along fine. The tube was pretty uncomfortable as long as it was in and when they pulled it out I felt sure they were taking my lung, too, but that was over in less than a minute. I was in the hospital three days and since I am already retired didn't have to hurry back to work. They told me that I had the type of fibrosis that prednisone would NOT help. My full recovery took 3-4 months which surprised me. I remember thinking in mid May and June that i didn't feel really good and that since I had this disease I probably would never be better, but I continued to gain strength and lung power for awhile. It was worth it for me to not take prednisone and I am on no medicine except for acid reflux medicine. It didn't completely clairify everything though as the pulmonologist at the U of Chicago says that I am "atypical". He is pretty sure that I have IPF but I don't think that he is 100% sure yet. Time will tell. Would I do it again? Probably. I had lots of people praying for me and still have for which I am very grateful. Glola Sher K Bauman wrote: Peggy...I think there are people who are noble and want to 'further the cause'. I am not one of them. Perhaps if I did not have so many existing chronic conditions I may be more receptive. I 'm beginning to NOT wanting to be a guinea-pig to give information to the medical field and not be of much help to me. Looks like I've made my decision here...I don't think I will do this OLbio. The odds do not appear to be in my favor and I refuse to take a chance on having any lingering problems to add to what I

have. So. There now! Hear me

talk! lol. Sher ipf 5-06 "Don't worry about tomorrow, God is already there" Biopsy Hi Sher, Did you ask your Dr. What he is looking for exactly?? and HOW willit change

your treatment??I did, the biopsy was to tell what kind of pf and the treatment wouldn't beany different. I am not into being a guinea pig for nothing. We already knowthere is no treatment to kill this monster. So Please pray long and hardbefore you make this decision. Also know I will be praying for you.I sure do miss all this action. Who was booted and WHY ??? ya know it'seatin at me..Love to each and every one.Lord be with Nick and today..Peggy

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[Guest guest]

Leanne...Just to put my 2cents in.I had the open lung bio, and was in the hospital for 2 days. I had very little pain, and no chest tube. I recovered fast.I was surprised to hear how much trouble other people on the board had.I don't know what to advise you to do.God bless youMark L.Odegard

To: Breathe-Support From: bofus@...Date: Wed, 13 Dec 2006 13:22:31 -0800Subject: Re: Biopsy

Leanne...thanks so much for your post and also the conversation we just had. Good to talk to you 'in person'.

I'm beginning to waver on this OLbio. Since there is no cure for pf what is accomplished by knowing "what" there is no cure for?

If Prednisone is the typical treatment, I'm not receptive to that either! I've listened and listened well to those of you here who do not recommend this treatment and why.

For those of you who responded to my request for info. re: OLbio....what treatment followed the OLbio you had and is it helping?

MB, you said you would do it again but what information/treatment was so revealing that you would, do it again?

I'm stuck. Even if we know what we have but there is no treatment what good is the knowledge?????

Love to all. Sher ipf 5-06

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

Biopsy

Hi Sher, Did you ask your Dr. What he is looking for exactly?? and HOW willit change your treatment??I did, the biopsy was to tell what kind of pf and the treatment wouldn't beany different. I am not into being a guinea pig for nothing. We already knowthere is no treatment to kill this monster. So Please pray long and hardbefore you make this decision. Also know I will be praying for you.I sure do miss all this action. Who was booted and WHY ??? ya know it'seatin at me..Love to each and every one.Lord be with Nick and today..Peggy

[Guest guest]

Glola..thanks for your post on this subject. I was diagnosed the same month/year as you. I too, will not take prednisone. So since that seems to be the treatment, if there is any, no point.

So do you know what you have since the OLbio? You say you are on no meds but would do it again. Why?

I have decided not to have this procedure.

Thanks for what you say.

Sher ipf 5-06

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

Biopsy

Hi Sher, Did you ask your Dr. What he is looking for exactly?? and HOW will! it change your treatment??I did, the biopsy was to tell what kind of pf and the treatment wouldn't beany different. I am not into being a guinea pig for nothing. We already knowthere is no treatment to kill this monster. So Please pray long and hardbefore you make this decision. Also know I will be praying for you.I sure do miss all this action. Who was booted and WHY ??? ya know it'seatin at me..Love to each and every one.Lord be with Nick and today..Peggy

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[Guest guest]

Mark...what did your OLbio reveal and what med are you now taking as a result?

Thanks, Sher

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

Biopsy

Hi Sher, Did you ask your Dr. What he is looking for exactly?? and HOW willit change your treatment??I did, the biopsy was to tell what kind of pf and the treatment wouldn't beany different. I am not into being a guinea pig for nothing. We already knowthere is no treatment to kill this monster. So Please pray long and hardbefore you make this decision. Also know I will be praying for you.I sure do miss all this action. Who was booted and WHY ??? ya know it'seatin at me..Love to each and every one.Lord be with Nick and today..Peggy

[Guest guest]

Beth...thanks another time for your input. I get a lot out of your posts.

I'm sure you have already read that I've decided not to have this procedure. I think the odds are not in my favor and if there is no cure, there is no cure. Before or after OLbio.

Thanks for the card! How sweet.

Sher

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

Biopsy

Hi Sher, Did you ask your Dr. What he is looking for exactly?? and HOW willit change your treatment??I did, the biopsy was to tell what kind of pf and the treatment wouldn't beany different. I am not into being a guinea pig for nothing. We already knowthere is no treatment to kill this monster. So Please pray long and hardbefore you make this decision. Also know I will be praying for you.I sure do miss all this action. Who was booted and WHY ??? ya know it'seatin at me..Love to each and every one.Lord be with Nick and today..Peggy

[Guest guest]

I have IPF for sure ,and the only med I am on is for acid reflux.Oh, I am taking Morphine Sulfate for shortness of breath.Mark L.Odegard

To: Breathe-Support From: bofus@...Date: Wed, 13 Dec 2006 15:42:14 -0800Subject: Re: Biopsy

Mark...what did your OLbio reveal and what med are you now taking as a result?

Thanks, Sher

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

Biopsy

Hi Sher, Did you ask your Dr. What he is looking for exactly?? and HOW willit change your treatment??I did, the biopsy was to tell what kind of pf and the treatment wouldn't beany different. I am not into being a guinea pig for nothing. We already knowthere is no treatment to kill this monster. So Please pray long and hardbefore you make this decision. Also know I will be praying for you.I sure do miss all this action. Who was booted and WHY ??? ya know it'seatin at me..Love to each and every one.Lord be with Nick and today..Peggy

[Guest guest]

Thanks Mark...I bought a "Mattress Genie" for the head of my bed and it is wonderful! Raises the head of the bed to different heights. Dr. says it will help the acid reflux.

Sher

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

Biopsy

Hi Sher, Did you ask your Dr. What he is looking for exactly?? and HOW willit change your treatment??I did, the biopsy was to tell what kind of pf and the treatment wouldn't beany different. I am not into being a guinea pig for nothing. We already knowthere is no treatment to kill this monster. So Please pray long and hardbefore you make this decision. Also know I will be praying for you.I sure do miss all this action. Who was booted and WHY ??? ya know it'seatin at me..Love to each and every one.Lord be with Nick and today..Peggy

[Guest guest]

Sher, I guess I would do it again because if I hadn't the Drs. would probably have wanted me to try prednisone and I would be always second guessing myself if I didn't take it. Now I can say I was tested and told it wouldn't help me and it has toooooo many side effects to take unless you know it is going to help. As I said before I didn't know how major the surgery was when I went into it either. I wasn't part of this group yet then and had only done a little reading on this disease. My Dr. wants me to try a clinical trial and I have been resisting for the same reason--too many side effects for no known help. Maybe later when I feel myself getting worse I will do it. But right now I am functioning too well and living my normal life mostly--a little bit more slowly. If you are at peace not doing it that is fine. The more I read from

this group the more I realize how much the Drs.don't know about it. As you and so many others have mentioned our lives are in God's hands and it is His timing. We pray and make the best decisions that we can. Glola Sher K Bauman wrote: Glola..thanks for your post on this subject. I was diagnosed the same month/year as you. I too, will not take prednisone. So

since that seems to be the treatment, if there is any, no point. So do you know what you have since the OLbio? You say you are on no meds but would do it again. Why? I have decided not to have this procedure. Thanks for what you say. Sher ipf 5-06 "Don't worry about tomorrow, God is already there" Biopsy Hi Sher, Did you ask your Dr. What he is looking for exactly?? and HOW will! it change

your treatment??I did, the biopsy was to tell what kind of pf and the treatment wouldn't beany different. I am not into being a guinea pig for nothing. We already knowthere is no treatment to kill this monster. So Please pray long and hardbefore you make this decision. Also know I will be praying for you.I sure do miss all this action. Who was booted and WHY ??? ya know it'seatin at me..Love to each and every one.Lord be with Nick and today..Peggy Cheap Talk? Check out Yahoo! Messenger's low PC-to-Phone call rates.

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[Guest guest]

Peggy

>

> Hi Sher, Did you ask your Dr. What he is looking for exactly?? and HOW

will

> it change your treatment??

> I did, the biopsy was to tell what kind of pf and the treatment

wouldn't be

> any different. I am not into being a guinea pig for nothing. We

already know

> there is no treatment to kill this monster. So Please pray long and

hard

> before you make this decision. Also know I will be praying for you.

>

> I sure do miss all this action. Who was booted and WHY ??? ya know

it's

> eatin at me..

> Love to each and every one.

>

> Lord be with Nick and today..

> Peggy

>

[Guest guest]

Sher;

You are right there is no cure for pf, whatever damage has been done can not be reversed but.. Depending on what type of pf you have they may be able to slow down the progression of the disease if not stop it. It IS important that you try to find out what type of pf you have and what caused it. All of that information has a definite bearing on the prognosis of the disease. I know you said you've made up your mind but I hope you will reconsider, it's your future at stake.

Gordon ipf/uip 12/03

Biopsy

Hi Sher, Did you ask your Dr. What he is looking for exactly?? and HOW willit change your treatment??I did, the biopsy was to tell what kind of pf and the treatment wouldn't beany different. I am not into being a guinea pig for nothing. We already knowthere is no treatment to kill this monster. So Please pray long and hardbefore you make this decision. Also know I will be praying for you.I sure do miss all this action. Who was booted and WHY ??? ya know it'seatin at me..Love to each and every one.Lord be with Nick and today..Peggy

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[Guest guest]

Peggy said ".....What he is looking for exactly?? and HOW willit change your treatment?? I did, the biopsy was to tell what kind of pf and the treatment wouldn't be any different. I am not into being a guinea pig for nothing. We already know there is no treatment to kill this monster." Lynn says - Peggy, you put that beautifully, I am glad you and your wisdom are back on board. "Why me?" I asked. And a little voice answered, "It's nothing personal." "Names were called and yours came up". Sometimes it's just

that random. Oh, Well.

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[Guest guest]

Hi Beth, you said " My life expectancy went from 2-4 years to 5-8 years. That had a significant psychological effect on me. It means with a lung transplant I could conceivably live to be nearly 60. " #1, I'm soooooo glad they found out it is NSIP. And I was wondering, is the OLbio nessecary in order to get on the transplant waiting list? Thank you, LynnA "Why me?" I asked. And a little voice answered, "It's nothing personal." "Names were called and yours came up". Sometimes it's just that random. Oh, Well.

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[Guest guest]

Glola...yes, we pray and make the best decisions we can.

I do not want to be in a blind study. 18 months long...on and on. I've found an easier softer way. Trust God.

Sher

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

Biopsy

Hi Sher, Did you ask your Dr. What he is looking for exactly?? and HOW will! ! it change your treatment??I did, the biopsy was to tell what kind of pf and the treatment wouldn't beany different. I am not into being a guinea pig for nothing. We already knowthere is no treatment to kill this monster. So Please pray long and hardbefore you make this decision. Also know I will be praying for you.I sure do miss all this action. Who was booted and WHY ??? ya know it'seatin at me..Love to each and every one.Lord be with Nick and today..Peggy

Cheap Talk? Check out Yahoo! Messenger's low PC-to-Phone call rates.

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[Guest guest]

Gordon...well, something more to consider.

Thanks. Sher

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

Biopsy

Hi Sher, Did you ask your Dr. What he is looking for exactly?? and HOW willit change your treatment??I did, the biopsy was to tell what kind of pf and the treatment wouldn't beany different. I am not into being a guinea pig for nothing. We already knowthere is no treatment to kill this monster. So Please pray long and hardbefore you make this decision. Also know I will be praying for you.I sure do miss all this action. Who was booted and WHY ??? ya know it'seatin at me..Love to each and every one.Lord be with Nick and today..Peggy

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[Guest guest]

Thanks Lynn. All I know is it was the right thing for me to do and I would do it again in a heartbeat. Honestly at the time I was just "going with the flow" of what was happening. I was way to sick to question much. My sister the physician was pretty much in charge and I trusted her judgement.

As for the question.... I honestly don't know. Some type of biopsy might be part of the protocol. I doubt that they'd require an open lung biopsy but..... I've heard of stranger things.

Beth Fibrotic NSIP 06/06

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

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

Re: Biopsy

Hi Beth, you said " My life expectancy went from 2-4 years to 5-8 years. That had a significant psychological effect on me. It means with a lung transplant I could conceivably live to be nearly 60. " #1, I'm soooooo glad they found out it is NSIP. And I was wondering, is the OLbio nessecary in order to get on the transplant waiting list?

Thank you, LynnA

"Why me?" I asked. And a little voice answered, "It's nothing personal." "Names were called and yours came up". Sometimes it's just that random. Oh, Well.

Everyone is raving about the all-new Yahoo! Mail beta.

[Guest guest]

Hi Sher and everyone, First of all I'm back home and miss my grandbabies already! Second, to save money I got dialup instead of dsl AND!!!! it is sooo slow! I think this means I will not be such a prolific (lol) contributor to our site. I have to add my two cents in on the OLbiopsy though. I had mine in May and I am just this past month feeling normal again. The area where I had the 3 incisions is always numb and tender and it might be my imagination but the top right side of my lung where the staples are (the very large and numerous staples by evidence of my xrays) is always hurting-almost like a permanent arthritis of the lung. All three pulmonists I saw insisted it had to be done for proper diagnosis even though my cat scan, mri and xrays showed that I had extensive scarring in both lungs and advanced PF. Te biopsy did confirm that the fibrosis was caused by

sarcoidosis-but since there is nothing that can be done for advanced PF, for the life of me I don't understand how the biopsy helped. If I had beginning PF, or even if it was in one lung I agree that finding the cause would help slow down the progresion, but I agree with you that I can see absolutely no reason to further damage your lungs when there is no cure for PF regardless of what caused it. On the plus side this website was an incredible support to me throughout the surgery and the infection that followed. Ginger, Peggy, and Joyce wrote such beautiful prayers and on the worst day when I literally felt I wouldn't make it, I dreamed I had a "host"of praying voices around me and was suddenly filled with strength and peace. In the midst of all of this God is so good! Sher K Bauman wrote: Gordon...well, something more to consider. Thanks. Sher "Don't worry about tomorrow, God is already there" Biopsy Hi Sher, Did you ask your Dr. What he is looking for exactly?? and HOW willit change your treatment??I did, the biopsy was to tell what kind of pf and the treatment wouldn't beany different. I am not into being a guinea pig for nothing. We already knowthere is no treatment to kill this monster. So Please pray long and hardbefore you make this decision. Also know I will be praying for you.I sure do miss all this action. Who was booted and WHY ??? ya know it'seatin at me..Love to each and every one.Lord be with Nick and today..Peggy No virus found in this incoming message.Checked by AVG Free Edition.Version: 7.5.432 / Virus Database: 268.15.18/585 - Release Date: 12/13/2006 11:49 AM

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[Guest guest]

Gordon,

I agree. If I had not had the biopsy, the docs would not have known the type that I have and been able to slow the progression. Here I am nearly ten years after biopsy. Up until biopsy, not one doctor had even said the word 'fibrosis' to me. I am a fighter and whatever tool is available, regardless of how painful and disabling it is, I am going to use it. Life is good!

Hugs, Joyce PF 1997 Bronchiectasis 2004 INDIANA >> Sher;> You are right there is no cure for pf, whatever damage has been done can not be reversed but.. Depending on what type of pf you have they may be able to slow down the progression of the disease if not stop it. It IS important that you try to find out what type of pf you have and what caused it. All of that information has a definite bearing on the prognosis of the disease. I know you said you've made up your mind but I hope you will reconsider, it's your future at stake.> Gordon ipf/uip 12/03 > Biopsy> > > Hi Sher, Did you ask your Dr. What he is looking for exactly?? and HOW will> it change your treatment??> I did, the biopsy was to tell what kind of pf and the treatment wouldn't be> any different. I am not into being a guinea pig for nothing. We already know> there is no treatment to kill this monster. So Please pray long and hard> before you make this decision. Also know I will be praying for you.> > I sure do miss all this action. Who was booted and WHY ??? ya know it's> eatin at me..> Love to each and every one.> > Lord be with Nick and today..> Peggy > > > > > > > > > > ------------------------------------------------------------------------------> > > No virus found in this incoming message.> Checked by AVG Free Edition.> Version: 7.5.432 / Virus Database: 268.15.18/585 - Release Date: 12/13/2006 11:49 AM>

[Guest guest]

Gordon...let's go back to what you posted for me...

It's my understanding there is no cure, not even any control to speak of. What type of pf do you refer to that can be 'slowed' or 'stopped'?

If what you say is accurate, then of course I need to reconsider. However, I think this warrants some good conversation from the board, don't you? I'm not the only one, nor will I be the last one to have to consider a OLbio. How do any of us know the bottom line of accuracy and not just opinions.

Don't misunderstand me Gordon...I'm not saying your opinion is not valid! But how do we really know what is factual??? It's damn scary.

Thanks again. Sher ipf 5-06

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

Biopsy

Hi Sher, Did you ask your Dr. What he is looking for exactly?? and HOW willit change your treatment??I did, the biopsy was to tell what kind of pf and the treatment wouldn't beany different. I am not into being a guinea pig for nothing. We already knowthere is no treatment to kill this monster. So Please pray long and hardbefore you make this decision. Also know I will be praying for you.I sure do miss all this action. Who was booted and WHY ??? ya know it'seatin at me..Love to each and every one.Lord be with Nick and today..Peggy

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[Guest guest]

I agree as well that we need to trust in God. I am a student of the bible as well as a nurse and prayer and trust in Jehovah God are what sustain me through each day. I also believe what is important is that we LISTEN to God. Some have said that "God helps those who help themselves". While this statement is not in the bible but originated in Aesop's Fables, it does have merit. A scripture that shows how we need to listen to God for our help is in Hebrews 4:16 where it states "Let us, therefore, approach with freeness of speech to the throne of undeserved kindness, that we may obtain mercy and find undeserved kindness for HELP AT THE RIGHT TIME" (capitals added by me) This scripture is telling us that helping ourselves means to listen to what instructions He is giving us and act on it for our own good. If we pray for help on what to do about this disease and a form of help comes our way

such as in a biopsy, lung transplant, or form of treatment, when we have prayed long and hard about it, we find in our hearts we are tending to lean a certain way in whether to accept that treatment or not. Then we have to decide is it God answering our prayers or are we going to make the decision based solely on our own opinion or those of others. I think in our hearts we know the answer, but not necessarily always in our minds. It is a constant matter of prayer for me that I be directed in the right course to take to help myself, that is why I had the biopsy. Now God may not direct another person to have it as He may not feel it is best for that person. Prayer is my communication with my Creator and I try hard to listen when He "speaks" to my heart. After all, He knows what is best for me and I dont. CarolynSher K Bauman wrote: Glola...yes, we pray and make the best decisions we can. I do not want to be in a blind study. 18 months long...on and on. I've found an easier softer way. Trust God. Sher "Don't worry about tomorrow, God is already there" Biopsy Hi Sher, Did you ask your Dr. What he is

looking for exactly?? and HOW will! ! it change your treatment??I did, the biopsy was to tell what kind of pf and the treatment wouldn't beany different. I am not into being a guinea pig for nothing. We already knowthere is no treatment to kill this monster. So Please pray long and hardbefore you make this decision. Also know I will be praying for you.I sure do miss all this action. Who was booted and WHY ??? ya know it'seatin at me..Love to each and every one.Lord be with Nick and today..Peggy Cheap Talk? Check out Yahoo! Messenger's low PC-to-Phone call rates. Access over 1 million songs - Yahoo! Music Unlimited.

[Guest guest]

Sher, If what I have seen and read is correct I beleive what Gordon is referring to is the type of PF that is secondary to Lupus, RA or some other connective tissue disorder. IPF has no known cause that can be pin pointed so therefore there is no treatment that they know of for sure that can slow it down. The medication that they use for the Lupus or the RA in some cases can slow down the progression of the PF. I got this info from my pulmo and from something that I read on line at the CPF web site I think.

By the way about the pets. The only thing I have heard about that is those of us with birds need to get rid of them. I still have mine. Duh!!

Barbara R IPF 1/2003>> Gordon...let's go back to what you posted for me...> It's my understanding there is no cure, not even any control to speak of. What type of pf do you refer to that can be 'slowed' or 'stopped'?> If what you say is accurate, then of course I need to reconsider. However, I think this warrants some good conversation from the board, don't you? I'm not the only one, nor will I be the last one to have to consider a OLbio. How do any of us know the bottom line of accuracy and not just opinions.> Don't misunderstand me Gordon...I'm not saying your opinion is not valid! But how do we really know what is factual??? It's damn scary.> Thanks again. Sher ipf 5-06> "Don't worry about tomorrow, God is already there"> Biopsy> > > Hi Sher, Did you ask your Dr. What he is looking for exactly?? and HOW will> it change your treatment??> I did, the biopsy was to tell what kind of pf and the treatment wouldn't be> any different. I am not into being a guinea pig for nothing. We already know> there is no treatment to kill this monster. So Please pray long and hard> before you make this decision. Also know I will be praying for you.> > I sure do miss all this action. Who was booted and WHY ??? ya know it's> eatin at me..> Love to each and every one.> > Lord be with Nick and today..> Peggy > > > > > > > > > --------------------------------------------------------------------------> > > No virus found in this incoming message.> Checked by AVG Free Edition.> Version: 7.5.432 / Virus Database: 268.15.18/585 - Release Date: 12/13/2006 11:49 AM>

[Guest guest]

As per your post, I am thinking the same thing. I've already had extensive blood work and do not have Lupus/Ra/auto-immune or allergies. So I'm still thinking, there is no cure for pf.

Thanks. Sher

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

Biopsy> > > Hi Sher, Did you ask your Dr. What he is looking for exactly?? and HOW will> it change your treatment??> I did, the biopsy was to tell what kind of pf and the treatment wouldn't be> any different. I am not into being a guinea pig for nothing. We already know> there is no treatment to kill this monster. So Please pray long and hard> before you make this decision. Also know I will be praying for you.> > I sure do miss all this action. Who was booted and WHY ??? ya know it's> eatin at me..> Love to each and every one.> > Lord be with Nick and today..> Peggy > > > & g! t; > > > > > --------------------------------------------------------------------------> > > No virus found in this incoming message.> Checked by AVG Free Edition.> Version: 7.5.432 / Virus Database: 268.15.18/585 - Release Date: 12/13/2006 11:49 AM>

[Guest guest]

Sher;

There are over 250 different types of pf. Each one having a different source cause or reason for being. Most of those, the vast majority, can be controlled. One of the ladies mentioned her pf is from sarcoidosis, I have 2 brothers with sarcoid. There disease is being controlled by prednisone. When I say controlled I mean the progression of the disease has been stopped. Their disease, even though it is in the lungs, has not progressed to pf. Another form of pf HP is an "allergic " reaction. One the source has been identified and/ if you can remove the source the progression of the disease slows down or stops completely. I'm definetley no doctor but between doing research for the ipf and the sarcoid for my brothers I've learned alot. Many of those who say they wouldn't do it had no change in their diagnosis, therefore no change in the prognosis. Ergo it wasn't " worth it" for them. But those that had a better diagnosis and prognosis would do it again. I hope this helps. If not please feel free to call me at . If any others who are trying to make the same decision would like to call please do.

Happy Hanukkah

Gordon ipf/uip 12/03

Biopsy

Hi Sher, Did you ask your Dr. What he is looking for exactly?? and HOW willit change your treatment??I did, the biopsy was to tell what kind of pf and the treatment wouldn't beany different. I am not into being a guinea pig for nothing. We already knowthere is no treatment to kill this monster. So Please pray long and hardbefore you make this decision. Also know I will be praying for you.I sure do miss all this action. Who was booted and WHY ??? ya know it'seatin at me..Love to each and every one.Lord be with Nick and today..Peggy

No virus found in this incoming message.Checked by AVG Free Edition.Version: 7.5.432 / Virus Database: 268.15.18/585 - Release Date: 12/13/2006 11:49 AM

No virus found in this incoming message.Checked by AVG Free Edition.Version: 7.5.432 / Virus Database: 268.15.18/586 - Release Date: 12/13/2006 6:13 PM