Update on Me

[Guest guest]

First let me start this by saying Happy Thanksgiving to you all! I hope Each and

everyone has a beautiful day! I have so much to be thankful for!

I had the CT scans as ordered,the six minute walk,and the lung function,blood

workup and the sleep apnea testing. I seen my Pulmodude

yesterday and hes what I know so far:

For 12 years I have been told I have COPD/asthma THIS IS NOT TRUE. I have

restrictive air. (I can get it out,but hard to get it in). I do have

Interstitial Lung Disease. My Pulmodude believes he knows what type it is but

does not want to guess, he wants me to see a renowned specialist in the field

who is also a professor as well as Dr in Iowa City. I do not remember his name

LOL but I will let You all know his name next week.

My 6 min walk ended with me needing 6 liters of oxygen to walk instead of the 3

liters I am on for rest and being up. That has been changed now to 3 liters when

resting and 4 when up. I had the lung function only 44% lung function and only

44% of oxygen getting into blood. (Hope that made sense)...

My Pulmodude told me what I have is rare and He only gets maybe 4-5 people a

year in his office hence the reason to send me to Iowa City to see this renowned

Dr as the Pulmodude put it! The Pulmodude said he did not want me to take any

tests that were unnecessary another reason he is sending me to Iowa City.

My Pulmodude believes I need a lung biopsy and if so he told me it would be done

on my side. He also told me if what they are seeing is scar tissue they cannot

reverse that but they could try and give me meds that may keep it from getting

worse. If it turns out to be inflammation it could be reversed.

The Pulmodude told me these are some BIG DECISIONS! I am very afraid of needing

the lung biopsy I have heard most talk about it on here. I do not tolerate

anesthesia well, I do not wake up from it too well...and I end up with a severe

sore throat and a very very bad cough after things like this. There is a part of

me that just does not think my body can really handle any more stress than its

already going through.

Ohh My sleep apnea test came back as SEVERE APNEA! I had 62 episodes an

hour,,,my oxygen dropped by 4%. My lowest oxygen was at 44. So Next week I get

fitted for the mask to wear at bed and they will be bleeding in my oxygen to it

when I sleep.

So this is my update thus far! It makes me tired to think about it! HAHA!

Again -Happy Thanksgiving!!

Donna

(Iowa)

[Guest guest]

Donna

You are the easiest kind of patient they ever study. was like you

with 89 an hour and 120 an hour on her back. Tells them immediately a

CPAP is needed and will help. Having been through somewhat inconclusive

studies myself, I was so happy when they told her the number of

interruptions because I knew that her doctor had found the problem and

now it could be treated. She had reached the point of maintaining a

headache for months. Her GP was just giving her headache meds but the

neurologist immediately attributed them to sleep and he was right.

The problem patients to decide on are those who fall in the 10-30 or so

range of interruptions per hour. They are left with two questions with

them. First is their apnea bad enough the CPAP will be beneficial.

Second, is there another cause for their sleep difficulties and needs to

be addressed.

>

> I am correcting something I typed here! It says I had 62 episodes when

tested for sleep apnea..That is wrong...I had 92 episodes an hour.

>

> Donna

> (Iowa)

>

>

>

>

> ________________________________

> From: mischievouskitten mischievouskitten@...

> To: Breathe-Support

> Sent: Thu, November 26, 2009 7:12:21 AM

> Subject: Update on Me

>

>

> First let me start this by saying Happy Thanksgiving to you all! I

hope Each and everyone has a beautiful day! I have so much to be

thankful for!

>

> I had the CT scans as ordered,the six minute walk,and the lung

function,blood workup and the sleep apnea testing. I seen my Pulmodude

> yesterday and hes what I know so far:

>

> For 12 years I have been told I have COPD/asthma THIS IS NOT TRUE. I

have restrictive air. (I can get it out,but hard to get it in). I do

have Interstitial Lung Disease. My Pulmodude believes he knows what type

it is but does not want to guess, he wants me to see a renowned

specialist in the field who is also a professor as well as Dr in Iowa

City. I do not remember his name LOL but I will let You all know his

name next week.

>

> My 6 min walk ended with me needing 6 liters of oxygen to walk instead

of the 3 liters I am on for rest and being up. That has been changed now

to 3 liters when resting and 4 when up. I had the lung function only 44%

lung function and only 44% of oxygen getting into blood. (Hope that made

sense)...

>

> My Pulmodude told me what I have is rare and He only gets maybe 4-5

people a year in his office hence the reason to send me to Iowa City to

see this renowned Dr as the Pulmodude put it! The Pulmodude said he did

not want me to take any tests that were unnecessary another reason he is

sending me to Iowa City.

>

> My Pulmodude believes I need a lung biopsy and if so he told me it

would be done on my side. He also told me if what they are seeing is

scar tissue they cannot reverse that but they could try and give me meds

that may keep it from getting worse. If it turns out to be inflammation

it could be reversed.

>

> The Pulmodude told me these are some BIG DECISIONS! I am very afraid

of needing the lung biopsy I have heard most talk about it on here. I do

not tolerate anesthesia well, I do not wake up from it too well...and I

end up with a severe sore throat and a very very bad cough after things

like this. There is a part of me that just does not think my body can

really handle any more stress than its already going through.

>

> Ohh My sleep apnea test came back as SEVERE APNEA! I had 62 episodes

an hour,,,my oxygen dropped by 4%. My lowest oxygen was at 44. So Next

week I get fitted for the mask to wear at bed and they will be bleeding

in my oxygen to it when I sleep.

>

> So this is my update thus far! It makes me tired to think about it!

HAHA!

>

> Again -Happy Thanksgiving! !

> Donna

> (Iowa)

>

[Guest guest]

Bruce,Thank You commenting on my post. I was wondering if You read my whole post before the correction? The reason I ask is because if they should decide for me to have a lung biopsy I am pretty scared because of the effects I have had with anesthesia before and now with my lung function being so low. I was wondering what your input is on this please and literally on my whole post..Thank you for your time! Happy Thanksgiving!!Donna (Iowa)From:

Bruce To: Breathe-Support Sent: Thu, November 26, 2009 11:23:22 AMSubject: Re: Update on Me

Donna

You are the easiest kind of patient they ever study. was like you

with 89 an hour and 120 an hour on her back. Tells them immediately a

CPAP is needed and will help. Having been through somewhat inconclusive

studies myself, I was so happy when they told her the number of

interruptions because I knew that her doctor had found the problem and

now it could be treated. She had reached the point of maintaining a

headache for months. Her GP was just giving her headache meds but the

neurologist immediately attributed them to sleep and he was right.

The problem patients to decide on are those who fall in the 10-30 or so

range of interruptions per hour. They are left with two questions with

them. First is their apnea bad enough the CPAP will be beneficial.

Second, is there another cause for their sleep difficulties and needs to

be addressed.

>

> I am correcting something I typed here! It says I had 62 episodes when

tested for sleep apnea..That is wrong...I had 92 episodes an hour.

>

> Donna

> (Iowa)

>

>

>

>

> ____________ _________ _________ __

> From: mischievouskitten mischievouskitten@ ...

> To: Breathe-Support@ yahoogroups. com

> Sent: Thu, November 26, 2009 7:12:21 AM

> Subject: Update on Me

>

>

> First let me start this by saying Happy Thanksgiving to you all! I

hope Each and everyone has a beautiful day! I have so much to be

thankful for!

>

> I had the CT scans as ordered,the six minute walk,and the lung

function,blood workup and the sleep apnea testing. I seen my Pulmodude

> yesterday and hes what I know so far:

>

> For 12 years I have been told I have COPD/asthma THIS IS NOT TRUE. I

have restrictive air. (I can get it out,but hard to get it in). I do

have Interstitial Lung Disease. My Pulmodude believes he knows what type

it is but does not want to guess, he wants me to see a renowned

specialist in the field who is also a professor as well as Dr in Iowa

City. I do not remember his name LOL but I will let You all know his

name next week.

>

> My 6 min walk ended with me needing 6 liters of oxygen to walk instead

of the 3 liters I am on for rest and being up. That has been changed now

to 3 liters when resting and 4 when up. I had the lung function only 44%

lung function and only 44% of oxygen getting into blood. (Hope that made

sense)...

>

> My Pulmodude told me what I have is rare and He only gets maybe 4-5

people a year in his office hence the reason to send me to Iowa City to

see this renowned Dr as the Pulmodude put it! The Pulmodude said he did

not want me to take any tests that were unnecessary another reason he is

sending me to Iowa City.

>

> My Pulmodude believes I need a lung biopsy and if so he told me it

would be done on my side. He also told me if what they are seeing is

scar tissue they cannot reverse that but they could try and give me meds

that may keep it from getting worse. If it turns out to be inflammation

it could be reversed.

>

> The Pulmodude told me these are some BIG DECISIONS! I am very afraid

of needing the lung biopsy I have heard most talk about it on here. I do

not tolerate anesthesia well, I do not wake up from it too well...and I

end up with a severe sore throat and a very very bad cough after things

like this. There is a part of me that just does not think my body can

really handle any more stress than its already going through.

>

> Ohh My sleep apnea test came back as SEVERE APNEA! I had 62 episodes

an hour,,,my oxygen dropped by 4%. My lowest oxygen was at 44. So Next

week I get fitted for the mask to wear at bed and they will be bleeding

in my oxygen to it when I sleep.

>

> So this is my update thus far! It makes me tired to think about it!

HAHA!

>

> Again -Happy Thanksgiving! !

> Donna

> (Iowa)

>

[Guest guest]

Donna,Where in Iowa do you live? We are probably moving to the Council Bluffs/Omaha area after the first of the year.(long story) Happy Thanksgiving!Kathy IPF 10/09 Type 2 diabetes forever agoSubject: Re: Update on MeTo: Breathe-Support Date: Thursday, November 26, 2009, 8:10 AM

I am correcting something I typed here! It says I had 62 episodes when tested for sleep apnea..That is wrong...I had 92 episodes an hour.Donna(Iowa)From: mischievouskitten <mischievouskitten@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Thu, November 26, 2009 7:12:21 AMSubject:

Update on Me

First let me start this by saying Happy Thanksgiving to you all! I hope Each and everyone has a beautiful day! I have so much to be thankful for!

I had the CT scans as ordered,the six minute walk,and the lung function,blood workup and the sleep apnea testing. I seen my Pulmodude

yesterday and hes what I know so far:

For 12 years I have been told I have COPD/asthma THIS IS NOT TRUE. I have restrictive air. (I can get it out,but hard to get it in). I do have Interstitial Lung Disease. My Pulmodude believes he knows what type it is but does not want to guess, he wants me to see a renowned specialist in the field who is also a professor as well as Dr in Iowa City. I do not remember his name LOL but I will let You all know his name next week.

My 6 min walk ended with me needing 6 liters of oxygen to walk instead of the 3 liters I am on for rest and being up. That has been changed now to 3 liters when resting and 4 when up. I had the lung function only 44% lung function and only 44% of oxygen getting into blood. (Hope that made sense)...

My Pulmodude told me what I have is rare and He only gets maybe 4-5 people a year in his office hence the reason to send me to Iowa City to see this renowned Dr as the Pulmodude put it! The Pulmodude said he did not want me to take any tests that were unnecessary another reason he is sending me to Iowa City.

My Pulmodude believes I need a lung biopsy and if so he told me it would be done on my side. He also told me if what they are seeing is scar tissue they cannot reverse that but they could try and give me meds that may keep it from getting worse. If it turns out to be inflammation it could be reversed.

The Pulmodude told me these are some BIG DECISIONS! I am very afraid of needing the lung biopsy I have heard most talk about it on here. I do not tolerate anesthesia well, I do not wake up from it too well...and I end up with a severe sore throat and a very very bad cough after things like this. There is a part of me that just does not think my body can really handle any more stress than its already going through.

Ohh My sleep apnea test came back as SEVERE APNEA! I had 62 episodes an hour,,,my oxygen dropped by 4%. My lowest oxygen was at 44. So Next week I get fitted for the mask to wear at bed and they will be bleeding in my oxygen to it when I sleep.

So this is my update thus far! It makes me tired to think about it! HAHA!

Again -Happy Thanksgiving! !

Donna

(Iowa)

[Guest guest]

I live in a little town named Centerville.DonnaTo: Breathe-Support Sent: Thu, November 26, 2009 12:29:45 PMSubject: Re: Update on Me

Donna,Where in Iowa do you live? We are probably moving to the Council Bluffs/Omaha area after the first of the year.(long story) Happy Thanksgiving!Kathy IPF 10/09 Type 2 diabetes forever agoFrom: Mischievous Kitten <mischievouskitten@ yahoo.com>Subject: Re: Update on MeTo: Breathe-Support@ yahoogroups. comDate: Thursday, November 26, 2009, 8:10 AM

I am correcting something I typed here! It says I had 62 episodes when tested for sleep apnea..That is wrong...I had 92 episodes an hour.Donna(Iowa)From: mischievouskitten <mischievouskitten@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Thu, November 26, 2009 7:12:21 AMSubject:

Update on Me

First let me start this by saying Happy Thanksgiving to you all! I hope Each and everyone has a beautiful day! I have so much to be thankful for!

I had the CT scans as ordered,the six minute walk,and the lung function,blood workup and the sleep apnea testing. I seen my Pulmodude

yesterday and hes what I know so far:

For 12 years I have been told I have COPD/asthma THIS IS NOT TRUE. I have restrictive air. (I can get it out,but hard to get it in). I do have Interstitial Lung Disease. My Pulmodude believes he knows what type it is but does not want to guess, he wants me to see a renowned specialist in the field who is also a professor as well as Dr in Iowa City. I do not remember his name LOL but I will let You all know his name next week.

My 6 min walk ended with me needing 6 liters of oxygen to walk instead of the 3 liters I am on for rest and being up. That has been changed now to 3 liters when resting and 4 when up. I had the lung function only 44% lung function and only 44% of oxygen getting into blood. (Hope that made sense)...

My Pulmodude told me what I have is rare and He only gets maybe 4-5 people a year in his office hence the reason to send me to Iowa City to see this renowned Dr as the Pulmodude put it! The Pulmodude said he did not want me to take any tests that were unnecessary another reason he is sending me to Iowa City.

My Pulmodude believes I need a lung biopsy and if so he told me it would be done on my side. He also told me if what they are seeing is scar tissue they cannot reverse that but they could try and give me meds that may keep it from getting worse. If it turns out to be inflammation it could be reversed.

The Pulmodude told me these are some BIG DECISIONS! I am very afraid of needing the lung biopsy I have heard most talk about it on here. I do not tolerate anesthesia well, I do not wake up from it too well...and I end up with a severe sore throat and a very very bad cough after things like this. There is a part of me that just does not think my body can really handle any more stress than its already going through.

Ohh My sleep apnea test came back as SEVERE APNEA! I had 62 episodes an hour,,,my oxygen dropped by 4%. My lowest oxygen was at 44. So Next week I get fitted for the mask to wear at bed and they will be bleeding in my oxygen to it when I sleep.

So this is my update thus far! It makes me tired to think about it! HAHA!

Again -Happy Thanksgiving! !

Donna

(Iowa)

[Guest guest]

Donna, I was born and raised in Nebr. Lived in Omaha when I taught there.....love it and the people but just too damn cold.

I also found a better art marked in the South

<FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif"></FONT>

To: Breathe-Support Sent: Thu, November 26, 2009 1:33:45 PMSubject: Re: Update on Me

I live in a little town named Centerville.Donna

From: Kathy Lindquist <psychnursekathy@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Thu, November 26, 2009 12:29:45 PMSubject: Re: Update on Me

Donna,Where in Iowa do you live? We are probably moving to the Council Bluffs/Omaha area after the first of the year.(long story) Happy Thanksgiving!Kathy IPF 10/09 Type 2 diabetes forever ago

From: Mischievous Kitten <mischievouskitten@ yahoo.com>Subject: Re: Update on MeTo: Breathe-Support@ yahoogroups. comDate: Thursday, November 26, 2009, 8:10 AM

I am correcting something I typed here! It says I had 62 episodes when tested for sleep apnea..That is wrong...I had 92 episodes an hour.Donna(Iowa)

From: mischievouskitten <mischievouskitten@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Thu, November 26, 2009 7:12:21 AMSubject: Update on Me

First let me start this by saying Happy Thanksgiving to you all! I hope Each and everyone has a beautiful day! I have so much to be thankful for!I had the CT scans as ordered,the six minute walk,and the lung function,blood workup and the sleep apnea testing. I seen my Pulmodudeyesterday and hes what I know so far:For 12 years I have been told I have COPD/asthma THIS IS NOT TRUE. I have restrictive air. (I can get it out,but hard to get it in). I do have Interstitial Lung Disease. My Pulmodude believes he knows what type it is but does not want to guess, he wants me to see a renowned specialist in the field who is also a professor as well as Dr in Iowa City. I do not remember his name LOL but I will let You all know his name next week.My 6 min walk ended with me needing 6 liters of oxygen to walk instead of the 3 liters I am on for rest and being up. That has been changed now to 3 liters when resting and 4 when up. I had the

lung function only 44% lung function and only 44% of oxygen getting into blood. (Hope that made sense)...My Pulmodude told me what I have is rare and He only gets maybe 4-5 people a year in his office hence the reason to send me to Iowa City to see this renowned Dr as the Pulmodude put it! The Pulmodude said he did not want me to take any tests that were unnecessary another reason he is sending me to Iowa City.My Pulmodude believes I need a lung biopsy and if so he told me it would be done on my side. He also told me if what they are seeing is scar tissue they cannot reverse that but they could try and give me meds that may keep it from getting worse. If it turns out to be inflammation it could be reversed.The Pulmodude told me these are some BIG DECISIONS! I am very afraid of needing the lung biopsy I have heard most talk about it on here. I do not tolerate anesthesia well, I do not wake up from it too well...and I end up with a

severe sore throat and a very very bad cough after things like this. There is a part of me that just does not think my body can really handle any more stress than its already going through.Ohh My sleep apnea test came back as SEVERE APNEA! I had 62 episodes an hour,,,my oxygen dropped by 4%. My lowest oxygen was at 44. So Next week I get fitted for the mask to wear at bed and they will be bleeding in my oxygen to it when I sleep.So this is my update thus far! It makes me tired to think about it! HAHA!Again -Happy Thanksgiving! !Donna(Iowa)

[Guest guest]

HAHA!!It is too damn cold here! I lived out in Cali for 19 years before moving to Iowa! What a change but I loved the cold and snow the forst couple of yers! I still love looking at the snow But Im house bound in the winter now cause Im not gettin out in it!!LOL!!!I am originally from Missouri but have been like a gypsy most of my life! Ive been here in Iowa almost 5 years!! Yes I love it here also!! I have family in SC and Ga. Of course I've lived there too!! hehe!!DonnaWhere r U now?To: Breathe-Support Sent: Thu, November 26, 2009 12:48:13 PMSubject: Re: Update on Me

Donna, I was born and raised in Nebr. Lived in Omaha when I taught there.....love it and the people but just too damn cold.

I also found a better art marked in the South

<FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http:// us.i1.yimg. com/us.yimg. com/i/mesg/ tsmileys2/ 50.gif"></FONT>

From: Mischievous Kitten <mischievouskitten@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Thu, November 26, 2009 1:33:45 PMSubject: Re: Update on Me

I live in a little town named Centerville.Donna

From: Kathy Lindquist <psychnursekathy@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Thu, November 26, 2009 12:29:45 PMSubject: Re: Update on Me

Donna,Where in Iowa do you live? We are probably moving to the Council Bluffs/Omaha area after the first of the year.(long story) Happy Thanksgiving!Kathy IPF 10/09 Type 2 diabetes forever ago

From: Mischievous Kitten <mischievouskitten@ yahoo.com>Subject: Re: Update on MeTo: Breathe-Support@ yahoogroups. comDate: Thursday, November 26, 2009, 8:10 AM

I am correcting something I typed here! It says I had 62 episodes when tested for sleep apnea..That is wrong...I had 92 episodes an hour.Donna(Iowa)

From: mischievouskitten <mischievouskitten@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Thu, November 26, 2009 7:12:21 AMSubject: Update on Me

First let me start this by saying Happy Thanksgiving to you all! I hope Each and everyone has a beautiful day! I have so much to be thankful for!I had the CT scans as ordered,the six minute walk,and the lung function,blood workup and the sleep apnea testing. I seen my Pulmodudeyesterday and hes what I know so far:For 12 years I have been told I have COPD/asthma THIS IS NOT TRUE. I have restrictive air. (I can get it out,but hard to get it in). I do have Interstitial Lung Disease. My Pulmodude believes he knows what type it is but does not want to guess, he wants me to see a renowned specialist in the field who is also a professor as well as Dr in Iowa City. I do not remember his name LOL but I will let You all know his name next week.My 6 min walk ended with me needing 6 liters of oxygen to walk instead of the 3 liters I am on for rest and being up. That has been changed now to 3 liters when resting and 4 when up. I had the

lung function only 44% lung function and only 44% of oxygen getting into blood. (Hope that made sense)...My Pulmodude told me what I have is rare and He only gets maybe 4-5 people a year in his office hence the reason to send me to Iowa City to see this renowned Dr as the Pulmodude put it! The Pulmodude said he did not want me to take any tests that were unnecessary another reason he is sending me to Iowa City.My Pulmodude believes I need a lung biopsy and if so he told me it would be done on my side. He also told me if what they are seeing is scar tissue they cannot reverse that but they could try and give me meds that may keep it from getting worse. If it turns out to be inflammation it could be reversed.The Pulmodude told me these are some BIG DECISIONS! I am very afraid of needing the lung biopsy I have heard most talk about it on here. I do not tolerate anesthesia well, I do not wake up from it too well...and I end up with a

severe sore throat and a very very bad cough after things like this. There is a part of me that just does not think my body can really handle any more stress than its already going through.Ohh My sleep apnea test came back as SEVERE APNEA! I had 62 episodes an hour,,,my oxygen dropped by 4%. My lowest oxygen was at 44. So Next week I get fitted for the mask to wear at bed and they will be bleeding in my oxygen to it when I sleep.So this is my update thus far! It makes me tired to think about it! HAHA!Again -Happy Thanksgiving! !Donna(Iowa)

[Guest guest]

donna

i didn't read your post yet

but i am very happy that the docs where i go avoid lung biopsy (i think because of the complications)

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Re: Update on MeTo: Breathe-Support Date: Thursday, November 26, 2009, 12:29 PM

Bruce,Thank You commenting on my post. I was wondering if You read my whole post before the correction? The reason I ask is because if they should decide for me to have a lung biopsy I am pretty scared because of the effects I have had with anesthesia before and now with my lung function being so low. I was wondering what your input is on this please and literally on my whole post..Thank you for your time! Happy Thanksgiving! !Donna (Iowa)

From: Bruce <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Thu, November 26, 2009 11:23:22 AMSubject: Re: Update on Me

DonnaYou are the easiest kind of patient they ever study. was like youwith 89 an hour and 120 an hour on her back. Tells them immediately aCPAP is needed and will help. Having been through somewhat inconclusivestudies myself, I was so happy when they told her the number ofinterruptions because I knew that her doctor had found the problem andnow it could be treated. She had reached the point of maintaining aheadache for months. Her GP was just giving her headache meds but theneurologist immediately attributed them to sleep and he was right.The problem patients to decide on are those who fall in the 10-30 or sorange of interruptions per hour. They are left with two questions withthem. First is their apnea bad enough the CPAP will be beneficial.Second, is there another cause for their sleep difficulties and needs tobe addressed.>> I am correcting something I typed here! It says I had 62 episodes whentested for sleep apnea..That is wrong...I had 92 episodes an hour.>> Donna> (Iowa)>>>>> ____________ _________ _________ __> From: mischievouskitten mischievouskitten@ ...> To: Breathe-Support@ yahoogroups. com> Sent: Thu, November 26, 2009 7:12:21 AM> Subject: Update on Me>>> First let me start this by saying Happy

Thanksgiving to you all! Ihope Each and everyone has a beautiful day! I have so much to bethankful for!>> I had the CT scans as ordered,the six minute walk,and the lungfunction,blood workup and the sleep apnea testing. I seen my Pulmodude> yesterday and hes what I know so far:>> For 12 years I have been told I have COPD/asthma THIS IS NOT TRUE. Ihave restrictive air. (I can get it out,but hard to get it in). I dohave Interstitial Lung Disease. My Pulmodude believes he knows what typeit is but does not want to guess, he wants me to see a renownedspecialist in the field who is also a professor as well as Dr in IowaCity. I do not remember his name LOL but I will let You all know hisname next week.>> My 6 min walk ended with me needing 6 liters of oxygen to walk insteadof the 3 liters I am on for rest and being up. That has been changed nowto 3 liters when resting

and 4 when up. I had the lung function only 44%lung function and only 44% of oxygen getting into blood. (Hope that madesense)...>> My Pulmodude told me what I have is rare and He only gets maybe 4-5people a year in his office hence the reason to send me to Iowa City tosee this renowned Dr as the Pulmodude put it! The Pulmodude said he didnot want me to take any tests that were unnecessary another reason he issending me to Iowa City.>> My Pulmodude believes I need a lung biopsy and if so he told me itwould be done on my side. He also told me if what they are seeing isscar tissue they cannot reverse that but they could try and give me medsthat may keep it from getting worse. If it turns out to be inflammationit could be reversed.>> The Pulmodude told me these are some BIG DECISIONS! I am very afraidof needing the lung biopsy I have heard most talk about it on here. I

donot tolerate anesthesia well, I do not wake up from it too well...and Iend up with a severe sore throat and a very very bad cough after thingslike this. There is a part of me that just does not think my body canreally handle any more stress than its already going through.>> Ohh My sleep apnea test came back as SEVERE APNEA! I had 62 episodesan hour,,,my oxygen dropped by 4%. My lowest oxygen was at 44. So Nextweek I get fitted for the mask to wear at bed and they will be bleedingin my oxygen to it when I sleep.>> So this is my update thus far! It makes me tired to think about it!HAHA!>> Again -Happy Thanksgiving! !> Donna> (Iowa)>

[Guest guest]

Pink

Doctors tend to say automatically in many areas they want the biopsy

because they want to determine the form of ILD. To a doctor that may be

enough.

However, the questions I always come back with are (1) the CT's weren't

clear enough to tell? and (2) what am I going to do differently based on

determining the specific form.

I had a VATS. Glad I did. But, I wouldn't have another one if suddenly

someone said they wanted to look again (don't laugh-thats not beyond my

rheumatologist to say). And, I do not like that many doctors don't treat

it as a patients choice and inform them of the pros and cons. I see

people here who have been led to believe its going to be like a walk in

the park. Well, it is for some. For most though its a bit more of an

ordeal. And, for others it is quite problematic. And, in her case, once

you've had issues with anesthesia you have real concern about any

procedures. I know I do. Beth's doctors didn't even want to risk a

colonoscopy.

Problem is we face difficult choices, but they are our choices. We are

not just tools for doctors to explore or decide for. Also, I was lucky

that I read about VATS here before having it and many warned me about it

so I knew that it wasn't as simple as the pulmonologist or surgeon made

it sound and I made an informed choice thanks to the forum. Thanks to

those who said they did, those who said they didn't, those who said they

would, and those who said they wouldn't. Unfortunately my doctors only

gave me one of those four views. I got all four here.

> >

> > I am correcting something I typed here! It says I had 62 episodes

when

> tested for sleep apnea..That is wrong...I had 92 episodes an hour.

> >

> > Donna

> > (Iowa)

> >

> >

> >

> >

> > ____________ _________ _________ __

> > From: mischievouskitten mischievouskitten@ ...

> > To: Breathe-Support@ yahoogroups. com

> > Sent: Thu, November 26, 2009 7:12:21 AM

> > Subject: Update on Me

> >

> >

> > First let me start this by saying Happy Thanksgiving to you all! I

> hope Each and everyone has a beautiful day! I have so much to be

> thankful for!

> >

> > I had the CT scans as ordered,the six minute walk,and the lung

> function,blood workup and the sleep apnea testing. I seen my Pulmodude

> > yesterday and hes what I know so far:

> >

> > For 12 years I have been told I have COPD/asthma THIS IS NOT TRUE. I

> have restrictive air. (I can get it out,but hard to get it in). I do

> have Interstitial Lung Disease. My Pulmodude believes he knows what

type

> it is but does not want to guess, he wants me to see a renowned

> specialist in the field who is also a professor as well as Dr in Iowa

> City. I do not remember his name LOL but I will let You all know his

> name next week.

> >

> > My 6 min walk ended with me needing 6 liters of oxygen to walk

instead

> of the 3 liters I am on for rest and being up. That has been changed

now

> to 3 liters when resting and 4 when up. I had the lung function only

44%

> lung function and only 44% of oxygen getting into blood. (Hope that

made

> sense)...

> >

> > My Pulmodude told me what I have is rare and He only gets maybe 4-5

> people a year in his office hence the reason to send me to Iowa City

to

> see this renowned Dr as the Pulmodude put it! The Pulmodude said he

did

> not want me to take any tests that were unnecessary another reason he

is

> sending me to Iowa City.

> >

> > My Pulmodude believes I need a lung biopsy and if so he told me it

> would be done on my side. He also told me if what they are seeing is

> scar tissue they cannot reverse that but they could try and give me

meds

> that may keep it from getting worse. If it turns out to be

inflammation

> it could be reversed.

> >

> > The Pulmodude told me these are some BIG DECISIONS! I am very afraid

> of needing the lung biopsy I have heard most talk about it on here. I

do

> not tolerate anesthesia well, I do not wake up from it too well...and

I

> end up with a severe sore throat and a very very bad cough after

things

> like this. There is a part of me that just does not think my body can

> really handle any more stress than its already going through.

> >

> > Ohh My sleep apnea test came back as SEVERE APNEA! I had 62 episodes

> an hour,,,my oxygen dropped by 4%. My lowest oxygen was at 44. So Next

> week I get fitted for the mask to wear at bed and they will be

bleeding

> in my oxygen to it when I sleep.

> >

> > So this is my update thus far! It makes me tired to think about it!

> HAHA!

> >

> > Again -Happy Thanksgiving! !

> > Donna

> > (Iowa)

> >

>

[Guest guest]

Bruce,These are great questions that I will be asking when I get the appointment. Now if I was to decided NOT to have the biopsy- Would the Pulmonologist still treat me? Distinguishing whether it is inflammation or scarring and how to treat it- I would think treating the inflammation would show changes if it were working and would not hurt me in the process- where in scarring it would not there would be no change. Your thoughts Please. (smiles)DonnaTo: Breathe-Support Sent: Thu, November 26, 2009 2:30:41 PMSubject: Re: Update on Me

Pink

Doctors tend to say automatically in many areas they want the biopsy

because they want to determine the form of ILD. To a doctor that may be

enough.

However, the questions I always come back with are (1) the CT's weren't

clear enough to tell? and (2) what am I going to do differently based on

determining the specific form.

I had a VATS. Glad I did. But, I wouldn't have another one if suddenly

someone said they wanted to look again (don't laugh-thats not beyond my

rheumatologist to say). And, I do not like that many doctors don't treat

it as a patients choice and inform them of the pros and cons. I see

people here who have been led to believe its going to be like a walk in

the park. Well, it is for some. For most though its a bit more of an

ordeal. And, for others it is quite problematic. And, in her case, once

you've had issues with anesthesia you have real concern about any

procedures. I know I do. Beth's doctors didn't even want to risk a

colonoscopy.

Problem is we face difficult choices, but they are our choices. We are

not just tools for doctors to explore or decide for. Also, I was lucky

that I read about VATS here before having it and many warned me about it

so I knew that it wasn't as simple as the pulmonologist or surgeon made

it sound and I made an informed choice thanks to the forum. Thanks to

those who said they did, those who said they didn't, those who said they

would, and those who said they wouldn't. Unfortunately my doctors only

gave me one of those four views. I got all four here.

> >

> > I am correcting something I typed here! It says I had 62 episodes

when

> tested for sleep apnea..That is wrong...I had 92 episodes an hour.

> >

> > Donna

> > (Iowa)

> >

> >

> >

> >

> > ____________ _________ _________ __

> > From: mischievouskitten mischievouskitten@ ...

> > To: Breathe-Support@ yahoogroups. com

> > Sent: Thu, November 26, 2009 7:12:21 AM

> > Subject: Update on Me

> >

> >

> > First let me start this by saying Happy Thanksgiving to you all! I

> hope Each and everyone has a beautiful day! I have so much to be

> thankful for!

> >

> > I had the CT scans as ordered,the six minute walk,and the lung

> function,blood workup and the sleep apnea testing. I seen my Pulmodude

> > yesterday and hes what I know so far:

> >

> > For 12 years I have been told I have COPD/asthma THIS IS NOT TRUE. I

> have restrictive air. (I can get it out,but hard to get it in). I do

> have Interstitial Lung Disease. My Pulmodude believes he knows what

type

> it is but does not want to guess, he wants me to see a renowned

> specialist in the field who is also a professor as well as Dr in Iowa

> City. I do not remember his name LOL but I will let You all know his

> name next week.

> >

> > My 6 min walk ended with me needing 6 liters of oxygen to walk

instead

> of the 3 liters I am on for rest and being up. That has been changed

now

> to 3 liters when resting and 4 when up. I had the lung function only

44%

> lung function and only 44% of oxygen getting into blood. (Hope that

made

> sense)...

> >

> > My Pulmodude told me what I have is rare and He only gets maybe 4-5

> people a year in his office hence the reason to send me to Iowa City

to

> see this renowned Dr as the Pulmodude put it! The Pulmodude said he

did

> not want me to take any tests that were unnecessary another reason he

is

> sending me to Iowa City.

> >

> > My Pulmodude believes I need a lung biopsy and if so he told me it

> would be done on my side. He also told me if what they are seeing is

> scar tissue they cannot reverse that but they could try and give me

meds

> that may keep it from getting worse. If it turns out to be

inflammation

> it could be reversed.

> >

> > The Pulmodude told me these are some BIG DECISIONS! I am very afraid

> of needing the lung biopsy I have heard most talk about it on here. I

do

> not tolerate anesthesia well, I do not wake up from it too well...and

I

> end up with a severe sore throat and a very very bad cough after

things

> like this. There is a part of me that just does not think my body can

> really handle any more stress than its already going through.

> >

> > Ohh My sleep apnea test came back as SEVERE APNEA! I had 62 episodes

> an hour,,,my oxygen dropped by 4%. My lowest oxygen was at 44. So Next

> week I get fitted for the mask to wear at bed and they will be

bleeding

> in my oxygen to it when I sleep.

> >

> > So this is my update thus far! It makes me tired to think about it!

> HAHA!

> >

> > Again -Happy Thanksgiving! !

> > Donna

> > (Iowa)

> >

>

[Guest guest]

Donna

The doctors will work with whatever information they have and whatever

choices you make or you just get different doctors. As to treatment it

certainly is different if they find connective tissue diseases. Also,

the form of ILD can play a role. Prednisone is known to help some forms,

does treat inflammation. Prednisone is believed by many not to help UIP

but then there are doctors who believe in prescribing it anyway.

In general the ability or accuracy in determining which ILD you have

from HRCT's is about 60%. Yours might be better or worse than that. The

ability from VATS is about 95%. But people proceed without VATS all the

time. Nothing at all wrong with that choice.

As to removing scarring, nothing does that. However, depending on the

cause the treatments may slow the progression.

Right now your pulmonologist apparently has an opinion that he's not

shared with you. I know I'm repeating myself but if I were his patient

he would share it and would share all tests and labs and would share

notes he's made regarding my condition. Then you can get someone else to

form an independent opinion and see if they concur.

As to treating the inflammation showing change if it works and not hurt

in the process, thats the problem. There are many like Dr. Raghu (at

least he did in a previous article) who believe you should treat all PF

with Prednisone and if it is effective continue it and assume its a form

of PF that Prednisone helps. It its not effective then discontinue it

and assume its UIP. If not getting hurt in the process was the case,

then that would be great. However, Prednisone does have side effects.

Thats why it becomes a personal choice.

If you knew prednisone would help, you'd nearly always choose to use it.

If you knew it would not help, you'd obviously never try it. Now, when

you don't know whether it will help or not, what do you do? Well, takes

a lot of information and thought to decide. Have to know what the

doctors think from the available tests and information. Then what are

the odds in your mind it might help, how much do you fear the side

effects, what are your other conditions, and how much do you feel the

need to try something, even if the odds are against it and it has side

effects.

Good pulmonologists find the choices as complex and personal as I

describe. They know the decisions are not clear cut. Not on biopsy. Not

on prednisone. They accept they don't know it all and what they would do

might not be right for you.

> > >

> > > I am correcting something I typed here! It says I had 62 episodes

> when

> > tested for sleep apnea..That is wrong...I had 92 episodes an hour.

> > >

> > > Donna

> > > (Iowa)

> > >

> > >

> > >

> > >

> > > ____________ _________ _________ __

> > > From: mischievouskitten mischievouskitten@ ...

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

> > > Sent: Thu, November 26, 2009 7:12:21 AM

> > > Subject: Update on Me

> > >

> > >

> > > First let me start this by saying Happy Thanksgiving to you all! I

> > hope Each and everyone has a beautiful day! I have so much to be

> > thankful for!

> > >

> > > I had the CT scans as ordered,the six minute walk,and the lung

> > function,blood workup and the sleep apnea testing. I seen my

Pulmodude

> > > yesterday and hes what I know so far:

> > >

> > > For 12 years I have been told I have COPD/asthma THIS IS NOT TRUE.

I

> > have restrictive air. (I can get it out,but hard to get it in). I do

> > have Interstitial Lung Disease. My Pulmodude believes he knows what

> type

> > it is but does not want to guess, he wants me to see a renowned

> > specialist in the field who is also a professor as well as Dr in

Iowa

> > City. I do not remember his name LOL but I will let You all know his

> > name next week.

> > >

> > > My 6 min walk ended with me needing 6 liters of oxygen to walk

> instead

> > of the 3 liters I am on for rest and being up. That has been changed

> now

> > to 3 liters when resting and 4 when up. I had the lung function only

> 44%

> > lung function and only 44% of oxygen getting into blood. (Hope that

> made

> > sense)...

> > >

> > > My Pulmodude told me what I have is rare and He only gets maybe

4-5

> > people a year in his office hence the reason to send me to Iowa City

> to

> > see this renowned Dr as the Pulmodude put it! The Pulmodude said he

> did

> > not want me to take any tests that were unnecessary another reason

he

> is

> > sending me to Iowa City.

> > >

> > > My Pulmodude believes I need a lung biopsy and if so he told me it

> > would be done on my side. He also told me if what they are seeing is

> > scar tissue they cannot reverse that but they could try and give me

> meds

> > that may keep it from getting worse. If it turns out to be

> inflammation

> > it could be reversed.

> > >

> > > The Pulmodude told me these are some BIG DECISIONS! I am very

afraid

> > of needing the lung biopsy I have heard most talk about it on here.

I

> do

> > not tolerate anesthesia well, I do not wake up from it too

well...and

> I

> > end up with a severe sore throat and a very very bad cough after

> things

> > like this. There is a part of me that just does not think my body

can

> > really handle any more stress than its already going through.

> > >

> > > Ohh My sleep apnea test came back as SEVERE APNEA! I had 62

episodes

> > an hour,,,my oxygen dropped by 4%. My lowest oxygen was at 44. So

Next

> > week I get fitted for the mask to wear at bed and they will be

> bleeding

> > in my oxygen to it when I sleep.

> > >

> > > So this is my update thus far! It makes me tired to think about

it!

> > HAHA!

> > >

> > > Again -Happy Thanksgiving! !

> > > Donna

> > > (Iowa)

> > >

> >

>

[Guest guest]

Donna<I'm good...crazy but getting better

<FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif"></FONT>

To: Breathe-Support Sent: Thu, November 26, 2009 1:58:44 PMSubject: Re: Update on Me

HAHA!!It is too damn cold here! I lived out in Cali for 19 years before moving to Iowa! What a change but I loved the cold and snow the forst couple of yers! I still love looking at the snow But Im house bound in the winter now cause Im not gettin out in it!!LOL!!!I am originally from Missouri but have been like a gypsy most of my life! Ive been here in Iowa almost 5 years!! Yes I love it here also!! I have family in SC and Ga. Of course I've lived there too!! hehe!!DonnaWhere r U now?

From: Soulliere <johnsbatik (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Thu, November 26, 2009 12:48:13 PMSubject: Re: Update on Me

Donna, I was born and raised in Nebr. Lived in Omaha when I taught there.....love it and the people but just too damn cold.

I also found a better art marked in the South

<FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http:// us.i1.yimg. com/us.yimg. com/i/mesg/ tsmileys2/ 50.gif"></FONT>

From: Mischievous Kitten <mischievouskitten@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Thu, November 26, 2009 1:33:45 PMSubject: Re: Update on Me

I live in a little town named Centerville.Donna

From: Kathy Lindquist <psychnursekathy@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Thu, November 26, 2009 12:29:45 PMSubject: Re: Update on Me

Donna,Where in Iowa do you live? We are probably moving to the Council Bluffs/Omaha area after the first of the year.(long story) Happy Thanksgiving!Kathy IPF 10/09 Type 2 diabetes forever ago

From: Mischievous Kitten <mischievouskitten@ yahoo.com>Subject: Re: Update on MeTo: Breathe-Support@ yahoogroups. comDate: Thursday, November 26, 2009, 8:10 AM

I am correcting something I typed here! It says I had 62 episodes when tested for sleep apnea..That is wrong...I had 92 episodes an hour.Donna(Iowa)

From: mischievouskitten <mischievouskitten@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Thu, November 26, 2009 7:12:21 AMSubject: Update on Me

First let me start this by saying Happy Thanksgiving to you all! I hope Each and everyone has a beautiful day! I have so much to be thankful for!I had the CT scans as ordered,the six minute walk,and the lung function,blood workup and the sleep apnea testing. I seen my Pulmodudeyesterday and hes what I know so far:For 12 years I have been told I have COPD/asthma THIS IS NOT TRUE. I have restrictive air. (I can get it out,but hard to get it in). I do have Interstitial Lung Disease. My Pulmodude believes he knows what type it is but does not want to guess, he wants me to see a renowned specialist in the field who is also a professor as well as Dr in Iowa City. I do not remember his name LOL but I will let You all know his name next week.My 6 min walk ended with me needing 6 liters of oxygen to walk instead of the 3 liters I am on for rest and being up. That has been changed now to 3 liters when resting and 4 when up. I had the

lung function only 44% lung function and only 44% of oxygen getting into blood. (Hope that made sense)...My Pulmodude told me what I have is rare and He only gets maybe 4-5 people a year in his office hence the reason to send me to Iowa City to see this renowned Dr as the Pulmodude put it! The Pulmodude said he did not want me to take any tests that were unnecessary another reason he is sending me to Iowa City.My Pulmodude believes I need a lung biopsy and if so he told me it would be done on my side. He also told me if what they are seeing is scar tissue they cannot reverse that but they could try and give me meds that may keep it from getting worse. If it turns out to be inflammation it could be reversed.The Pulmodude told me these are some BIG DECISIONS! I am very afraid of needing the lung biopsy I have heard most talk about it on here. I do not tolerate anesthesia well, I do not wake up from it too well...and I end up with a

severe sore throat and a very very bad cough after things like this. There is a part of me that just does not think my body can really handle any more stress than its already going through.Ohh My sleep apnea test came back as SEVERE APNEA! I had 62 episodes an hour,,,my oxygen dropped by 4%. My lowest oxygen was at 44. So Next week I get fitted for the mask to wear at bed and they will be bleeding in my oxygen to it when I sleep.So this is my update thus far! It makes me tired to think about it! HAHA!Again -Happy Thanksgiving! !Donna(Iowa)

[Guest guest]

I a, on prednizone......I love it..I can breath better, pain is almost gone. I swear by it.......side effects are all physical I,m 68 I don,t get out much and don,t care what i look like now..............Not like when I was younger

I need to follow Bruce and learn much more about this disease...........

<FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif"></FONT>

To: Breathe-Support Sent: Thu, November 26, 2009 4:15:58 PMSubject: Re: Update on Me

DonnaThe doctors will work with whatever information they have and whateverchoices you make or you just get different doctors. As to treatment itcertainly is different if they find connective tissue diseases. Also,the form of ILD can play a role. Prednisone is known to help some forms,does treat inflammation. Prednisone is believed by many not to help UIPbut then there are doctors who believe in prescribing it anyway.In general the ability or accuracy in determining which ILD you havefrom HRCT's is about 60%. Yours might be better or worse than that. Theability from VATS is about 95%. But people proceed without VATS all thetime. Nothing at all wrong with that choice.As to removing scarring, nothing does that. However, depending on thecause the treatments may slow the progression.Right now your pulmonologist apparently has an opinion that he's notshared with you. I know I'm

repeating myself but if I were his patienthe would share it and would share all tests and labs and would sharenotes he's made regarding my condition. Then you can get someone else toform an independent opinion and see if they concur.As to treating the inflammation showing change if it works and not hurtin the process, thats the problem. There are many like Dr. Raghu (atleast he did in a previous article) who believe you should treat all PFwith Prednisone and if it is effective continue it and assume its a formof PF that Prednisone helps. It its not effective then discontinue itand assume its UIP. If not getting hurt in the process was the case,then that would be great. However, Prednisone does have side effects.Thats why it becomes a personal choice.If you knew prednisone would help, you'd nearly always choose to use it.If you knew it would not help, you'd obviously never try it. Now,

whenyou don't know whether it will help or not, what do you do? Well, takesa lot of information and thought to decide. Have to know what thedoctors think from the available tests and information. Then what arethe odds in your mind it might help, how much do you fear the sideeffects, what are your other conditions, and how much do you feel theneed to try something, even if the odds are against it and it has sideeffects.Good pulmonologists find the choices as complex and personal as Idescribe. They know the decisions are not clear cut. Not on biopsy. Noton prednisone. They accept they don't know it all and what they would domight not be right for you.> > >> > > I am correcting something I typed here! It says I had 62 episodes> when> > tested for sleep apnea..That is wrong...I had 92 episodes an hour.> > >> > > Donna> > > (Iowa)> > >> > >> > >> > >> > > ____________ _________ _________ __> > > From: mischievouskitten mischievouskitten@ ...> > > To: Breathe-Support@ yahoogroups. com> > > Sent: Thu, November 26, 2009 7:12:21 AM> > > Subject: Update on Me> > >> > >> > > First let me start this by saying Happy Thanksgiving to you all! I> > hope Each and everyone has a beautiful day! I have so much to be> > thankful for!>

> >> > > I had the CT scans as ordered,the six minute walk,and the lung> > function,blood workup and the sleep apnea testing. I seen myPulmodude> > > yesterday and hes what I know so far:> > >> > > For 12 years I have been told I have COPD/asthma THIS IS NOT TRUE.I> > have restrictive air. (I can get it out,but hard to get it in). I do> > have Interstitial Lung Disease. My Pulmodude believes he knows what> type> > it is but does not want to guess, he wants me to see a renowned> > specialist in the field who is also a professor as well as Dr inIowa> > City. I do not remember his name LOL but I will let You all know his> > name next week.> > >> > > My 6 min walk ended with me needing 6 liters of oxygen to walk> instead> > of the 3 liters I am on for rest and being up.

That has been changed> now> > to 3 liters when resting and 4 when up. I had the lung function only> 44%> > lung function and only 44% of oxygen getting into blood. (Hope that> made> > sense)...> > >> > > My Pulmodude told me what I have is rare and He only gets maybe4-5> > people a year in his office hence the reason to send me to Iowa City> to> > see this renowned Dr as the Pulmodude put it! The Pulmodude said he> did> > not want me to take any tests that were unnecessary another reasonhe> is> > sending me to Iowa City.> > >> > > My Pulmodude believes I need a lung biopsy and if so he told me it> > would be done on my side. He also told me if what they are seeing is> > scar tissue they cannot reverse that but they could try and give me> meds> >

that may keep it from getting worse. If it turns out to be> inflammation> > it could be reversed.> > >> > > The Pulmodude told me these are some BIG DECISIONS! I am veryafraid> > of needing the lung biopsy I have heard most talk about it on here.I> do> > not tolerate anesthesia well, I do not wake up from it toowell...and> I> > end up with a severe sore throat and a very very bad cough after> things> > like this. There is a part of me that just does not think my bodycan> > really handle any more stress than its already going through.> > >> > > Ohh My sleep apnea test came back as SEVERE APNEA! I had 62episodes> > an hour,,,my oxygen dropped by 4%. My lowest oxygen was at 44. SoNext> > week I get fitted for the mask to wear at bed and they will be> bleeding>

> in my oxygen to it when I sleep.> > >> > > So this is my update thus far! It makes me tired to think aboutit!> > HAHA!> > >> > > Again -Happy Thanksgiving! !> > > Donna> > > (Iowa)> > >> >>

[Guest guest]

another side effect is NOT being able to spell or type well...LOL

<FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif"></FONT>

To: Breathe-Support Sent: Thu, November 26, 2009 4:27:31 PMSubject: Re: Re: Update on Me

I a, on prednizone.. ....I love it..I can breath better, pain is almost gone. I swear by it.......side effects are all physical I,m 68 I don,t get out much and don,t care what i look like now......... .....Not like when I was younger

I need to follow Bruce and learn much more about this disease..... ......

<FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http:// us.i1.yimg. com/us.yimg. com/i/mesg/ tsmileys2/ 50.gif"></FONT>

From: Bruce <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Thu, November 26, 2009 4:15:58 PMSubject: Re: Update on Me

DonnaThe doctors will work with whatever information they have and whateverchoices you make or you just get different doctors. As to treatment itcertainly is different if they find connective tissue diseases. Also,the form of ILD can play a role. Prednisone is known to help some forms,does treat inflammation. Prednisone is believed by many not to help UIPbut then there are doctors who believe in prescribing it anyway.In general the ability or accuracy in determining which ILD you havefrom HRCT's is about 60%. Yours might be better or worse than that. Theability from VATS is about 95%. But people proceed without VATS all thetime. Nothing at all wrong with that choice.As to removing scarring, nothing does that. However, depending on thecause the treatments may slow the progression.Right now your pulmonologist apparently has an opinion that he's notshared with you. I know I'm

repeating myself but if I were his patienthe would share it and would share all tests and labs and would sharenotes he's made regarding my condition. Then you can get someone else toform an independent opinion and see if they concur.As to treating the inflammation showing change if it works and not hurtin the process, thats the problem. There are many like Dr. Raghu (atleast he did in a previous article) who believe you should treat all PFwith Prednisone and if it is effective continue it and assume its a formof PF that Prednisone helps. It its not effective then discontinue itand assume its UIP. If not getting hurt in the process was the case,then that would be great. However, Prednisone does have side effects.Thats why it becomes a personal choice.If you knew prednisone would help, you'd nearly always choose to use it.If you knew it would not help, you'd obviously never try it. Now,

whenyou don't know whether it will help or not, what do you do? Well, takesa lot of information and thought to decide. Have to know what thedoctors think from the available tests and information. Then what arethe odds in your mind it might help, how much do you fear the sideeffects, what are your other conditions, and how much do you feel theneed to try something, even if the odds are against it and it has sideeffects.Good pulmonologists find the choices as complex and personal as Idescribe. They know the decisions are not clear cut. Not on biopsy. Noton prednisone. They accept they don't know it all and what they would domight not be right for you.> > >> > > I am correcting something I typed here! It says I had 62 episodes> when> > tested for sleep apnea..That is wrong...I had 92 episodes an hour.> > >> > > Donna> > > (Iowa)> > >> > >> > >> > >> > > ____________ _________ _________ __> > > From: mischievouskitten mischievouskitten@ ...> > > To: Breathe-Support@ yahoogroups. com> > > Sent: Thu, November 26, 2009 7:12:21 AM> > > Subject: Update on Me> > >> > >> > > First let me start this by saying Happy Thanksgiving to you all! I> > hope Each and everyone has a beautiful day! I have so much to be> > thankful

for!> > >> > > I had the CT scans as ordered,the six minute walk,and the lung> > function,blood workup and the sleep apnea testing. I seen myPulmodude> > > yesterday and hes what I know so far:> > >> > > For 12 years I have been told I have COPD/asthma THIS IS NOT TRUE.I> > have restrictive air. (I can get it out,but hard to get it in). I do> > have Interstitial Lung Disease. My Pulmodude believes he knows what> type> > it is but does not want to guess, he wants me to see a renowned> > specialist in the field who is also a professor as well as Dr inIowa> > City. I do not remember his name LOL but I will let You all know his> > name next week.> > >> > > My 6 min walk ended with me needing 6 liters of oxygen to walk> instead> > of the 3 liters I am on for rest

and being up. That has been changed> now> > to 3 liters when resting and 4 when up. I had the lung function only> 44%> > lung function and only 44% of oxygen getting into blood. (Hope that> made> > sense)...> > >> > > My Pulmodude told me what I have is rare and He only gets maybe4-5> > people a year in his office hence the reason to send me to Iowa City> to> > see this renowned Dr as the Pulmodude put it! The Pulmodude said he> did> > not want me to take any tests that were unnecessary another reasonhe> is> > sending me to Iowa City.> > >> > > My Pulmodude believes I need a lung biopsy and if so he told me it> > would be done on my side. He also told me if what they are seeing is> > scar tissue they cannot reverse that but they could try and give me>

meds> > that may keep it from getting worse. If it turns out to be> inflammation> > it could be reversed.> > >> > > The Pulmodude told me these are some BIG DECISIONS! I am veryafraid> > of needing the lung biopsy I have heard most talk about it on here.I> do> > not tolerate anesthesia well, I do not wake up from it toowell...and> I> > end up with a severe sore throat and a very very bad cough after> things> > like this. There is a part of me that just does not think my bodycan> > really handle any more stress than its already going through.> > >> > > Ohh My sleep apnea test came back as SEVERE APNEA! I had 62episodes> > an hour,,,my oxygen dropped by 4%. My lowest oxygen was at 44. SoNext> > week I get fitted for the mask to wear at bed and they will be>

bleeding> > in my oxygen to it when I sleep.> > >> > > So this is my update thus far! It makes me tired to think aboutit!> > HAHA!> > >> > > Again -Happy Thanksgiving! !> > > Donna> > > (Iowa)> > >> >>

[Guest guest]

Hi Donna,

My sister in law is a pulmonmary nurse at the U of Iowa. So when I was in Iowa

last spring we stopped in and saw her and a couple of doctors. Dr.

Hunnenhake in that department is one of, if not the best, expert at diagnosing

IPF with a HRCT scan. Dr. Lakshmi Durairaj is also a very knowledgable doctor.

She is perhaps one of the nicest most helpful doctors you will ever meet. My

pulmo doctor at the U of Miami knows them both, converses with them often, and

they are all on the same page. Although the U of Iowa is not a designated center

of excellence for IPF they are probably just as good. They even have their own

IPF drug cocktail that they are trying out.

I wouldn't hesitate to go there.

They recently did a lung transplant on a woman that was 71 years old.

Tell them I said Hi.

Good luck in what ever you decide.

Terre, IPF, 6-08, FL

>

>

> Subject: Re: Update on Me

> To: Breathe-Support

> Date: Thursday, November 26, 2009, 8:10 AM

>

>

>

>

>

>

>

>  

>

>

>

>

>

>

>

>

>

> I am correcting something I typed here! It says I had 62 episodes when

tested for sleep apnea..That is wrong...I had 92 episodes an hour.

>

> Donna

> (Iowa)

>

> From: mischievouskitten <mischievouskitten@ yahoo.com>

> To: Breathe-Support@ yahoogroups. com

> Sent: Thu, November 26, 2009 7:12:21 AM

> Subject:

> Update on Me

>

>

>

>

>

>

>

>

>

>  

>

>

>

>

>

>

> First let me start this by saying Happy Thanksgiving to you all! I hope

Each and everyone has a beautiful day! I have so much to be thankful for!

>

>

>

> I had the CT scans as ordered,the six minute walk,and the lung function,blood

workup and the sleep apnea testing. I seen my Pulmodude

>

> yesterday and hes what I know so far:

>

>

>

> For 12 years I have been told I have COPD/asthma THIS IS NOT TRUE. I have

restrictive air. (I can get it out,but hard to get it in). I do have

Interstitial Lung Disease. My Pulmodude believes he knows what type it is but

does not want to guess, he wants me to see a renowned specialist in the field

who is also a professor as well as Dr in Iowa City. I do not remember his name

LOL but I will let You all know his name next week.

>

>

>

> My 6 min walk ended with me needing 6 liters of oxygen to walk instead of the

3 liters I am on for rest and being up. That has been changed now to 3 liters

when resting and 4 when up. I had the lung function only 44% lung function and

only 44% of oxygen getting into blood. (Hope that made sense)...

>

>

>

> My Pulmodude told me what I have is rare and He only gets maybe 4-5 people a

year in his office hence the reason to send me to Iowa City to see this renowned

Dr as the Pulmodude put it! The Pulmodude said he did not want me to take any

tests that were unnecessary another reason he is sending me to Iowa City.

>

>

>

> My Pulmodude believes I need a lung biopsy and if so he told me it would be

done on my side. He also told me if what they are seeing is scar tissue they

cannot reverse that but they could try and give me meds that may keep it from

getting worse. If it turns out to be inflammation it could be reversed.

>

>

>

> The Pulmodude told me these are some BIG DECISIONS! I am very afraid of

needing the lung biopsy I have heard most talk about it on here. I do not

tolerate anesthesia well, I do not wake up from it too well...and I end up with

a severe sore throat and a very very bad cough after things like this. There is

a part of me that just does not think my body can really handle any more stress

than its already going through.

>

>

>

> Ohh My sleep apnea test came back as SEVERE APNEA! I had 62 episodes an

hour,,,my oxygen dropped by 4%. My lowest oxygen was at 44. So Next week I get

fitted for the mask to wear at bed and they will be bleeding in my oxygen to it

when I sleep.

>

>

>

> So this is my update thus far! It makes me tired to think about it! HAHA!

>

>

>

> Again -Happy Thanksgiving! !

>

> Donna

>

> (Iowa)

>

[Guest guest]

Donna,

You may want to think ahead a little and consider if you may want to be a part of a medical trial. In that case, the requirements for positive diagnosis would normally include either a VATS or a less invasive proceedure for getting a biopsy. Also I recently came across a study which reported a 50% change in medical treatment due to biopsy, however I haven't found a study which indicated that one could live longer. As Bruce says, it is your decision to make with your doctors. Personally, knowing what problems I had with my VATS, I might reconsider. Others may go through the proceedure without problem. I donj't think any of us would judge too harshly either way.

Jerry/Mississippi/54/IPF/dx April 05Who believes that hard times help us appreciate the good times even more.

Subject: Re: Re: Update on MeTo: Breathe-Support Date: Thursday, November 26, 2009, 8:54 PM

Bruce,These are great questions that I will be asking when I get the appointment. Now if I was to decided NOT to have the biopsy- Would the Pulmonologist still treat me? Distinguishing whether it is inflammation or scarring and how to treat it- I would think treating the inflammation would show changes if it were working and would not hurt me in the process- where in scarring it would not there would be no change. Your thoughts Please. (smiles)Donna

From: Bruce <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Thu, November 26, 2009 2:30:41 PMSubject: Re: Update on Me

PinkDoctors tend to say automatically in many areas they want the biopsybecause they want to determine the form of ILD. To a doctor that may beenough.However, the questions I always come back with are (1) the CT's weren'tclear enough to tell? and (2) what am I going to do differently based ondetermining the specific form.I had a VATS. Glad I did. But, I wouldn't have another one if suddenlysomeone said they wanted to look again (don't laugh-thats not beyond myrheumatologist to say). And, I do not like that many doctors don't treatit as a patients choice and inform them of the pros and cons. I seepeople here who have been led to believe its going to be like a walk inthe park. Well, it is for some. For most though its a bit more of anordeal. And, for others it is quite problematic. And, in her case, onceyou've had issues with anesthesia you have real concern about anyprocedures. I

know I do. Beth's doctors didn't even want to risk acolonoscopy.Problem is we face difficult choices, but they are our choices. We arenot just tools for doctors to explore or decide for. Also, I was luckythat I read about VATS here before having it and many warned me about itso I knew that it wasn't as simple as the pulmonologist or surgeon madeit sound and I made an informed choice thanks to the forum. Thanks tothose who said they did, those who said they didn't, those who said theywould, and those who said they wouldn't. Unfortunately my doctors onlygave me one of those four views. I got all four here.> >> > I am correcting something I typed here! It says I had 62

episodeswhen> tested for sleep apnea..That is wrong...I had 92 episodes an hour.> >> > Donna> > (Iowa)> >> >> >> >> > ____________ _________ _________ __> > From: mischievouskitten mischievouskitten@ ...> > To: Breathe-Support@ yahoogroups. com> > Sent: Thu, November 26, 2009 7:12:21 AM> > Subject: Update on Me> >> >> > First let me start this by saying Happy Thanksgiving to you all! I> hope Each and everyone has a beautiful day! I have so much to be> thankful for!> >> > I had the CT scans as ordered,the six minute walk,and the lung> function,blood workup and the sleep apnea testing. I seen my Pulmodude> > yesterday and hes what I know so far:> >> > For 12 years I have been told I have COPD/asthma THIS IS

NOT TRUE. I> have restrictive air. (I can get it out,but hard to get it in). I do> have Interstitial Lung Disease. My Pulmodude believes he knows whattype> it is but does not want to guess, he wants me to see a renowned> specialist in the field who is also a professor as well as Dr in Iowa> City. I do not remember his name LOL but I will let You all know his> name next week.> >> > My 6 min walk ended with me needing 6 liters of oxygen to walkinstead> of the 3 liters I am on for rest and being up. That has been changednow> to 3 liters when resting and 4 when up. I had the lung function only44%> lung function and only 44% of oxygen getting into blood. (Hope thatmade> sense)...> >> > My Pulmodude told me what I have is rare and He only gets maybe 4-5> people a year in his office hence the reason to send me to Iowa

Cityto> see this renowned Dr as the Pulmodude put it! The Pulmodude said hedid> not want me to take any tests that were unnecessary another reason heis> sending me to Iowa City.> >> > My Pulmodude believes I need a lung biopsy and if so he told me it> would be done on my side. He also told me if what they are seeing is> scar tissue they cannot reverse that but they could try and give memeds> that may keep it from getting worse. If it turns out to beinflammation> it could be reversed.> >> > The Pulmodude told me these are some BIG DECISIONS! I am very afraid> of needing the lung biopsy I have heard most talk about it on here. Ido> not tolerate anesthesia well, I do not wake up from it too well...andI> end up with a severe sore throat and a very very bad cough afterthings> like this. There is a part of me

that just does not think my body can> really handle any more stress than its already going through.> >> > Ohh My sleep apnea test came back as SEVERE APNEA! I had 62 episodes> an hour,,,my oxygen dropped by 4%. My lowest oxygen was at 44. So Next> week I get fitted for the mask to wear at bed and they will bebleeding> in my oxygen to it when I sleep.> >> > So this is my update thus far! It makes me tired to think about it!> HAHA!> >> > Again -Happy Thanksgiving! !> > Donna> > (Iowa)> >>

[Guest guest]

LOLOL!!! TOO Funny!!! Hugs from DonnaTo: Breathe-Support Sent: Thu, November 26, 2009 3:28:42 PMSubject: Re: Re: Update on Me

another side effect is NOT being able to spell or type well...LOL

<FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http:// us.i1.yimg. com/us.yimg. com/i/mesg/ tsmileys2/ 50.gif"></FONT>

From: Soulliere <johnsbatik (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Thu, November 26, 2009 4:27:31 PMSubject: Re: Re: Update on Me

I a, on prednizone.. ....I love it..I can breath better, pain is almost gone. I swear by it.......side effects are all physical I,m 68 I don,t get out much and don,t care what i look like now......... .....Not like when I was younger

I need to follow Bruce and learn much more about this disease..... ......

<FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http:// us.i1.yimg. com/us.yimg. com/i/mesg/ tsmileys2/ 50.gif"></FONT>

From: Bruce <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Thu, November 26, 2009 4:15:58 PMSubject: Re: Update on Me

DonnaThe doctors will work with whatever information they have and whateverchoices you make or you just get different doctors. As to treatment itcertainly is different if they find connective tissue diseases. Also,the form of ILD can play a role. Prednisone is known to help some forms,does treat inflammation. Prednisone is believed by many not to help UIPbut then there are doctors who believe in prescribing it anyway.In general the ability or accuracy in determining which ILD you havefrom HRCT's is about 60%. Yours might be better or worse than that. Theability from VATS is about 95%. But people proceed without VATS all thetime. Nothing at all wrong with that choice.As to removing scarring, nothing does that. However, depending on thecause the treatments may slow the progression.Right now your pulmonologist apparently has an opinion that he's notshared with you. I know I'm

repeating myself but if I were his patienthe would share it and would share all tests and labs and would sharenotes he's made regarding my condition. Then you can get someone else toform an independent opinion and see if they concur.As to treating the inflammation showing change if it works and not hurtin the process, thats the problem. There are many like Dr. Raghu (atleast he did in a previous article) who believe you should treat all PFwith Prednisone and if it is effective continue it and assume its a formof PF that Prednisone helps. It its not effective then discontinue itand assume its UIP. If not getting hurt in the process was the case,then that would be great. However, Prednisone does have side effects.Thats why it becomes a personal choice.If you knew prednisone would help, you'd nearly always choose to use it.If you knew it would not help, you'd obviously never try it. Now,

whenyou don't know whether it will help or not, what do you do? Well, takesa lot of information and thought to decide. Have to know what thedoctors think from the available tests and information. Then what arethe odds in your mind it might help, how much do you fear the sideeffects, what are your other conditions, and how much do you feel theneed to try something, even if the odds are against it and it has sideeffects.Good pulmonologists find the choices as complex and personal as Idescribe. They know the decisions are not clear cut. Not on biopsy. Noton prednisone. They accept they don't know it all and what they would domight not be right for you.> > >> > > I am correcting something I typed here! It says I had 62 episodes> when> > tested for sleep apnea..That is wrong...I had 92 episodes an hour.> > >> > > Donna> > > (Iowa)> > >> > >> > >> > >> > > ____________ _________ _________ __> > > From: mischievouskitten mischievouskitten@ ...> > > To: Breathe-Support@ yahoogroups. com> > > Sent: Thu, November 26, 2009 7:12:21 AM> > > Subject: Update on Me> > >> > >> > > First let me start this by saying Happy Thanksgiving to you all! I> > hope Each and everyone has a beautiful day! I have so much to be> > thankful

for!> > >> > > I had the CT scans as ordered,the six minute walk,and the lung> > function,blood workup and the sleep apnea testing. I seen myPulmodude> > > yesterday and hes what I know so far:> > >> > > For 12 years I have been told I have COPD/asthma THIS IS NOT TRUE.I> > have restrictive air. (I can get it out,but hard to get it in). I do> > have Interstitial Lung Disease. My Pulmodude believes he knows what> type> > it is but does not want to guess, he wants me to see a renowned> > specialist in the field who is also a professor as well as Dr inIowa> > City. I do not remember his name LOL but I will let You all know his> > name next week.> > >> > > My 6 min walk ended with me needing 6 liters of oxygen to walk> instead> > of the 3 liters I am on for rest

and being up. That has been changed> now> > to 3 liters when resting and 4 when up. I had the lung function only> 44%> > lung function and only 44% of oxygen getting into blood. (Hope that> made> > sense)...> > >> > > My Pulmodude told me what I have is rare and He only gets maybe4-5> > people a year in his office hence the reason to send me to Iowa City> to> > see this renowned Dr as the Pulmodude put it! The Pulmodude said he> did> > not want me to take any tests that were unnecessary another reasonhe> is> > sending me to Iowa City.> > >> > > My Pulmodude believes I need a lung biopsy and if so he told me it> > would be done on my side. He also told me if what they are seeing is> > scar tissue they cannot reverse that but they could try and give me>

meds> > that may keep it from getting worse. If it turns out to be> inflammation> > it could be reversed.> > >> > > The Pulmodude told me these are some BIG DECISIONS! I am veryafraid> > of needing the lung biopsy I have heard most talk about it on here.I> do> > not tolerate anesthesia well, I do not wake up from it toowell...and> I> > end up with a severe sore throat and a very very bad cough after> things> > like this. There is a part of me that just does not think my bodycan> > really handle any more stress than its already going through.> > >> > > Ohh My sleep apnea test came back as SEVERE APNEA! I had 62episodes> > an hour,,,my oxygen dropped by 4%. My lowest oxygen was at 44. SoNext> > week I get fitted for the mask to wear at bed and they will be>

bleeding> > in my oxygen to it when I sleep.> > >> > > So this is my update thus far! It makes me tired to think aboutit!> > HAHA!> > >> > > Again -Happy Thanksgiving! !> > > Donna> > > (Iowa)> > >> >>

[Guest guest]

Hello Donna,I am Tammy and I have just been diagnosis with UIP but i am not really sure what all this means because the pathologist also said i have large areas of inflammation consistant with a connective tissue disorder. Anyhow the reason i am writting is because I was going through all these post and I see that you live in Iowa somewhere and that Kathy is moving to council bluffs after the first of the year. well I live in omaha and thought it would be nice to have someone close by that understands what I am going through. Please let me know where you are. Happy Turkey day Tammy 35 UIP 11/09

To: Breathe-Support Sent: Thu, November 26, 2009 5:25:01 PMSubject: Re: Update on Me

Hi Donna,My sister in law is a pulmonmary nurse at the U of Iowa. So when I was in Iowa last spring we stopped in and saw her and a couple of doctors. Dr. Hunnenhake in that department is one of, if not the best, expert at diagnosing IPF with a HRCT scan. Dr. Lakshmi Durairaj is also a very knowledgable doctor. She is perhaps one of the nicest most helpful doctors you will ever meet. My pulmo doctor at the U of Miami knows them both, converses with them often, and they are all on the same page. Although the U of Iowa is not a designated center of excellence for IPF they are probably just as good. They even have their own IPF drug cocktail that they are trying out.I wouldn't hesitate to go there.They recently did a lung transplant on a woman that was 71 years old.Tell them I said Hi.Good luck in what ever you decide.Terre, IPF, 6-08, FL> > From: Mischievous Kitten <mischievouskitten@ ...>> Subject: Re: Update on Me> To: Breathe-Support@ yahoogroups. com> Date: Thursday, November 26, 2009, 8:10 AM> > > > > > > > Â > > > >

> > > > > > I am correcting something I typed here! It says I had 62 episodes when tested for sleep apnea..That is wrong...I had 92 episodes an hour.> > Donna> (Iowa)> > From: mischievouskitten <mischievouskitten@ yahoo.com>> To: Breathe-Support@ yahoogroups. com> Sent: Thu, November 26, 2009 7:12:21 AM> Subject:> Update on Me> > > > > > > > > > Â > > > > > > > First let me start this by saying Happy Thanksgiving to you all! I hope Each and everyone has a beautiful day! I have so much to be thankful for!> > > > I had the CT scans as ordered,the six minute walk,and the lung function,blood workup and the sleep apnea testing. I seen

my Pulmodude> > yesterday and hes what I know so far:> > > > For 12 years I have been told I have COPD/asthma THIS IS NOT TRUE. I have restrictive air. (I can get it out,but hard to get it in). I do have Interstitial Lung Disease. My Pulmodude believes he knows what type it is but does not want to guess, he wants me to see a renowned specialist in the field who is also a professor as well as Dr in Iowa City. I do not remember his name LOL but I will let You all know his name next week.> > > > My 6 min walk ended with me needing 6 liters of oxygen to walk instead of the 3 liters I am on for rest and being up. That has been changed now to 3 liters when resting and 4 when up. I had the lung function only 44% lung function and only 44% of oxygen getting into blood. (Hope that made sense)...> > > > My Pulmodude told me what I have is rare and He only gets maybe

4-5 people a year in his office hence the reason to send me to Iowa City to see this renowned Dr as the Pulmodude put it! The Pulmodude said he did not want me to take any tests that were unnecessary another reason he is sending me to Iowa City.> > > > My Pulmodude believes I need a lung biopsy and if so he told me it would be done on my side. He also told me if what they are seeing is scar tissue they cannot reverse that but they could try and give me meds that may keep it from getting worse. If it turns out to be inflammation it could be reversed.> > > > The Pulmodude told me these are some BIG DECISIONS! I am very afraid of needing the lung biopsy I have heard most talk about it on here. I do not tolerate anesthesia well, I do not wake up from it too well...and I end up with a severe sore throat and a very very bad cough after things like this. There is a part of me that just does not think my

body can really handle any more stress than its already going through.> > > > Ohh My sleep apnea test came back as SEVERE APNEA! I had 62 episodes an hour,,,my oxygen dropped by 4%. My lowest oxygen was at 44. So Next week I get fitted for the mask to wear at bed and they will be bleeding in my oxygen to it when I sleep.> > > > So this is my update thus far! It makes me tired to think about it! HAHA!> > > > Again -Happy Thanksgiving! !> > Donna> > (Iowa)>

[Guest guest]

Tammy,I would love to meet up with you after we move. I'll let you know more details when I know them. Keep on posting. Yes it it scary. But like everyone says, there is no and I repeat NO expiration date tattooed anywhere on us. Live life one day at a time to the best of your ability.Kathy IPF 10/09 Type 2 diabetes forever agoSubject: Re: Re: Update on MeTo: Breathe-Support Date: Thursday, November 26, 2009, 7:43 PM

Hello Donna,I am Tammy and I have just been diagnosis with UIP but i am not really sure what all this means because the pathologist also said i have large areas of inflammation consistant with a connective tissue disorder. Anyhow the reason i am writting is because I was going through all these post and I see that you live in Iowa somewhere and that Kathy is moving to council bluffs after the first of the year. well I live in omaha and thought it would be nice to have someone close by that understands what I am going through. Please let me know where you are. Happy Turkey day Tammy 35 UIP 11/09

From: "higgstk (AT) bellsouth (DOT) net" <higgstk (AT) bellsouth (DOT) net>To: Breathe-Support@ yahoogroups. comSent: Thu, November 26, 2009 5:25:01 PMSubject: Re: Update on Me

Hi Donna,My sister in law is a pulmonmary nurse at the U of Iowa. So when I was in Iowa last spring we stopped in and saw her and a couple of doctors. Dr. Hunnenhake in that department is one of, if not the best, expert at diagnosing IPF with a HRCT scan. Dr. Lakshmi Durairaj is also a very knowledgable doctor. She is perhaps one of the nicest most helpful doctors you will ever meet. My pulmo doctor at the U of Miami knows them both, converses with them often, and they are all on the same page. Although the U of Iowa is not a designated center of excellence for IPF they are probably just as good. They even have their own IPF drug cocktail that they are trying out.I wouldn't hesitate to go there.They recently did a lung transplant on a woman that was 71 years old.Tell them I said Hi.Good luck in what ever you decide.Terre, IPF, 6-08, FL> > From: Mischievous Kitten <mischievouskitten@ ...>> Subject: Re: Update on Me> To: Breathe-Support@ yahoogroups. com> Date: Thursday, November 26, 2009, 8:10 AM> > > > > > > > Â > >

> >

> > > > > > I am correcting something I typed here! It says I had 62 episodes when tested for sleep apnea..That is wrong...I had 92 episodes an hour.> > Donna> (Iowa)> > From: mischievouskitten <mischievouskitten@ yahoo.com>> To: Breathe-Support@ yahoogroups. com> Sent: Thu, November 26, 2009 7:12:21 AM> Subject:> Update on Me> > > > > > > > > > Â > > > > > > > First let me start this by saying Happy Thanksgiving to you all! I hope Each and everyone has a beautiful day! I have so much to be thankful for!> > > > I had the CT scans as ordered,the six minute walk,and the lung function,blood workup and the sleep apnea

testing. I seen

my Pulmodude> > yesterday and hes what I know so far:> > > > For 12 years I have been told I have COPD/asthma THIS IS NOT TRUE. I have restrictive air. (I can get it out,but hard to get it in). I do have Interstitial Lung Disease. My Pulmodude believes he knows what type it is but does not want to guess, he wants me to see a renowned specialist in the field who is also a professor as well as Dr in Iowa City. I do not remember his name LOL but I will let You all know his name next week.> > > > My 6 min walk ended with me needing 6 liters of oxygen to walk instead of the 3 liters I am on for rest and being up. That has been changed now to 3 liters when resting and 4 when up. I had the lung function only 44% lung function and only 44% of oxygen getting into blood. (Hope that made sense)...> > > > My Pulmodude told me what I have is rare and He only gets maybe

4-5 people a year in his office hence the reason to send me to Iowa City to see this renowned Dr as the Pulmodude put it! The Pulmodude said he did not want me to take any tests that were unnecessary another reason he is sending me to Iowa City.> > > > My Pulmodude believes I need a lung biopsy and if so he told me it would be done on my side. He also told me if what they are seeing is scar tissue they cannot reverse that but they could try and give me meds that may keep it from getting worse. If it turns out to be inflammation it could be reversed.> > > > The Pulmodude told me these are some BIG DECISIONS! I am very afraid of needing the lung biopsy I have heard most talk about it on here. I do not tolerate anesthesia well, I do not wake up from it too well...and I end up with a severe sore throat and a very very bad cough after things like this. There is a part of me that just does not think my

body can really handle any more stress than its already going through.> > > > Ohh My sleep apnea test came back as SEVERE APNEA! I had 62 episodes an hour,,,my oxygen dropped by 4%. My lowest oxygen was at 44. So Next week I get fitted for the mask to wear at bed and they will be bleeding in my oxygen to it when I sleep.> > > > So this is my update thus far! It makes me tired to think about it! HAHA!> > > > Again -Happy Thanksgiving! !> > Donna> > (Iowa)>

[Guest guest]

I am in Centerville IowaTo: Breathe-Support Sent: Thu, November 26, 2009 9:43:11 PMSubject: Re: Re: Update on Me

Hello Donna,I am Tammy and I have just been diagnosis with UIP but i am not really sure what all this means because the pathologist also said i have large areas of inflammation consistant with a connective tissue disorder. Anyhow the reason i am writting is because I was going through all these post and I see that you live in Iowa somewhere and that Kathy is moving to council bluffs after the first of the year. well I live in omaha and thought it would be nice to have someone close by that understands what I am going through. Please let me know where you are. Happy Turkey day Tammy 35 UIP 11/09

From: "higgstk (AT) bellsouth (DOT) net" <higgstk (AT) bellsouth (DOT) net>To: Breathe-Support@ yahoogroups. comSent: Thu, November 26, 2009 5:25:01 PMSubject: Re: Update on Me

Hi Donna,My sister in law is a pulmonmary nurse at the U of Iowa. So when I was in Iowa last spring we stopped in and saw her and a couple of doctors. Dr. Hunnenhake in that department is one of, if not the best, expert at diagnosing IPF with a HRCT scan. Dr. Lakshmi Durairaj is also a very knowledgable doctor. She is perhaps one of the nicest most helpful doctors you will ever meet. My pulmo doctor at the U of Miami knows them both, converses with them often, and they are all on the same page. Although the U of Iowa is not a designated center of excellence for IPF they are probably just as good. They even have their own IPF drug cocktail that they are trying out.I wouldn't hesitate to go there.They recently did a lung transplant on a woman that was 71 years old.Tell them I said Hi.Good luck in what ever you decide.Terre, IPF, 6-08, FL> > From: Mischievous Kitten <mischievouskitten@ ...>> Subject: Re: Update on Me> To: Breathe-Support@ yahoogroups. com> Date: Thursday, November 26, 2009, 8:10 AM> > > > > > > > Â > > > >

> > > > > > I am correcting something I typed here! It says I had 62 episodes when tested for sleep apnea..That is wrong...I had 92 episodes an hour.> > Donna> (Iowa)> > From: mischievouskitten <mischievouskitten@ yahoo.com>> To: Breathe-Support@ yahoogroups. com> Sent: Thu, November 26, 2009 7:12:21 AM> Subject:> Update on Me> > > > > > > > > > Â > > > > > > > First let me start this by saying Happy Thanksgiving to you all! I hope Each and everyone has a beautiful day! I have so much to be thankful for!> > > > I had the CT scans as ordered,the six minute walk,and the lung function,blood workup and the sleep apnea

testing. I seen

my Pulmodude> > yesterday and hes what I know so far:> > > > For 12 years I have been told I have COPD/asthma THIS IS NOT TRUE. I have restrictive air. (I can get it out,but hard to get it in). I do have Interstitial Lung Disease. My Pulmodude believes he knows what type it is but does not want to guess, he wants me to see a renowned specialist in the field who is also a professor as well as Dr in Iowa City. I do not remember his name LOL but I will let You all know his name next week.> > > > My 6 min walk ended with me needing 6 liters of oxygen to walk instead of the 3 liters I am on for rest and being up. That has been changed now to 3 liters when resting and 4 when up. I had the lung function only 44% lung function and only 44% of oxygen getting into blood. (Hope that made sense)...> > > > My Pulmodude told me what I have is rare and He only gets maybe

4-5 people a year in his office hence the reason to send me to Iowa City to see this renowned Dr as the Pulmodude put it! The Pulmodude said he did not want me to take any tests that were unnecessary another reason he is sending me to Iowa City.> > > > My Pulmodude believes I need a lung biopsy and if so he told me it would be done on my side. He also told me if what they are seeing is scar tissue they cannot reverse that but they could try and give me meds that may keep it from getting worse. If it turns out to be inflammation it could be reversed.> > > > The Pulmodude told me these are some BIG DECISIONS! I am very afraid of needing the lung biopsy I have heard most talk about it on here. I do not tolerate anesthesia well, I do not wake up from it too well...and I end up with a severe sore throat and a very very bad cough after things like this. There is a part of me that just does not think my

body can really handle any more stress than its already going through.> > > > Ohh My sleep apnea test came back as SEVERE APNEA! I had 62 episodes an hour,,,my oxygen dropped by 4%. My lowest oxygen was at 44. So Next week I get fitted for the mask to wear at bed and they will be bleeding in my oxygen to it when I sleep.> > > > So this is my update thus far! It makes me tired to think about it! HAHA!> > > > Again -Happy Thanksgiving! !> > Donna> > (Iowa)>

[Guest guest]

TerreThats good to know. Dr. Hunninghake and Dr. Durairaj are excellent even though they aren't strictly dedicated to Interstitial Lung Diseases. For her perusal here is some info on them both: W. Hunninghake, M.D.

Sterba Professor of Medicine

Director, UI Institute for Clinical and Translational Science

Dr. Hunninghake's clinical and research interested

include the areas of sarcoidosis, asthma, occupational lung disease,

and interstitial lung disease. Dr. Hunninghake's basic studies

emphasize molecular and cellular biology, virology and second messenger

studies. Lakshmi Durairaj, M.B.B.S., M.S.

Assistant Professor

Dr. Durairaj's main focus is outcomes research in the

critically ill. Her current interests are in preventing biofilm

formation in endotracheal tubes, and using aerosolized xylitol for

prevention of ventilator-associated pneumonia. Other projects include a

randomized controlled trial of long-term non-invasive ventilation for

stable COPD and assessment of tracheal colonization patterns in the

intensive care unit. > > > > From: Mischievous Kitten mischievouskitten@> > Subject: Re: Update on Me> > To: Breathe-Support > > Date: Thursday, November 26, 2009, 8:10 AM> > > > > > > > > > > > > > > > Â > > > > > > > > > > > > > > > > > > > > I am correcting something I typed here! It says I had 62 episodes when tested for sleep apnea..That is wrong...I had 92 episodes an hour.> > > > Donna> > (Iowa)> > > > From: mischievouskitten <mischievouskitten@ yahoo.com>> > To: Breathe-Support@ yahoogroups. com> > Sent: Thu, November 26, 2009 7:12:21 AM> > Subject:> > Update on Me> > > > > > > > > > > > > > > > > > > > Â > > > > > > > > > > > > > > First let me start this by saying Happy Thanksgiving to you all! I hope Each and everyone has a beautiful day! I have so much to be thankful for!> > > > > > > > I had the CT scans as ordered,the six minute walk,and the lung function,blood workup and the sleep apnea testing. I seen my Pulmodude> > > > yesterday and hes what I know so far:> > > > > > > > For 12 years I have been told I have COPD/asthma THIS IS NOT TRUE. I have restrictive air. (I can get it out,but hard to get it in). I do have Interstitial Lung Disease. My Pulmodude believes he knows what type it is but does not want to guess, he wants me to see a renowned specialist in the field who is also a professor as well as Dr in Iowa City. I do not remember his name LOL but I will let You all know his name next week.> > > > > > > > My 6 min walk ended with me needing 6 liters of oxygen to walk instead of the 3 liters I am on for rest and being up. That has been changed now to 3 liters when resting and 4 when up. I had the lung function only 44% lung function and only 44% of oxygen getting into blood. (Hope that made sense)...> > > > > > > > My Pulmodude told me what I have is rare and He only gets maybe 4-5 people a year in his office hence the reason to send me to Iowa City to see this renowned Dr as the Pulmodude put it! The Pulmodude said he did not want me to take any tests that were unnecessary another reason he is sending me to Iowa City.> > > > > > > > My Pulmodude believes I need a lung biopsy and if so he told me it would be done on my side. He also told me if what they are seeing is scar tissue they cannot reverse that but they could try and give me meds that may keep it from getting worse. If it turns out to be inflammation it could be reversed.> > > > > > > > The Pulmodude told me these are some BIG DECISIONS! I am very afraid of needing the lung biopsy I have heard most talk about it on here. I do not tolerate anesthesia well, I do not wake up from it too well...and I end up with a severe sore throat and a very very bad cough after things like this. There is a part of me that just does not think my body can really handle any more stress than its already going through.> > > > > > > > Ohh My sleep apnea test came back as SEVERE APNEA! I had 62 episodes an hour,,,my oxygen dropped by 4%. My lowest oxygen was at 44. So Next week I get fitted for the mask to wear at bed and they will be bleeding in my oxygen to it when I sleep.> > > > > > > > So this is my update thus far! It makes me tired to think about it! HAHA!> > > > > > > > Again -Happy Thanksgiving! !> > > > Donna> > > > (Iowa)> >>

[Guest guest]

Terre

Again, I personally would choose a Center of Excellence or ILD center

where they spent more of their time on ILD's but if she is comfortable

with the University of Iowa and the doctors you mention she should go

there. Hopefully she'll like them a great deal. If not she can change.

> > >

> > > From: Mischievous Kitten mischievouskitten@

> > > Subject: Re: Update on Me

> > > To: Breathe-Support

> > > Date: Thursday, November 26, 2009, 8:10 AM

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > > Â

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > > I am correcting something I typed here! It says I had 62

> episodes when tested for sleep apnea..That is wrong...I had 92

episodes

> an hour.

> > >

> > > Donna

> > > (Iowa)

> > >

> > > From: mischievouskitten <mischievouskitten@ yahoo.com>

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

> > > Sent: Thu, November 26, 2009 7:12:21 AM

> > > Subject:

> > > Update on Me

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > > Â

> > >

> > >

> > >

> > >

> > >

> > >

> > > First let me start this by saying Happy Thanksgiving to you

> all! I hope Each and everyone has a beautiful day! I have so much to

be

> thankful for!

> > >

> > >

> > >

> > > I had the CT scans as ordered,the six minute walk,and the lung

> function,blood workup and the sleep apnea testing. I seen my Pulmodude

> > >

> > > yesterday and hes what I know so far:

> > >

> > >

> > >

> > > For 12 years I have been told I have COPD/asthma THIS IS NOT TRUE.

I

> have restrictive air. (I can get it out,but hard to get it in). I do

> have Interstitial Lung Disease. My Pulmodude believes he knows what

type

> it is but does not want to guess, he wants me to see a renowned

> specialist in the field who is also a professor as well as Dr in Iowa

> City. I do not remember his name LOL but I will let You all know his

> name next week.

> > >

> > >

> > >

> > > My 6 min walk ended with me needing 6 liters of oxygen to walk

> instead of the 3 liters I am on for rest and being up. That has been

> changed now to 3 liters when resting and 4 when up. I had the lung

> function only 44% lung function and only 44% of oxygen getting into

> blood. (Hope that made sense)...

> > >

> > >

> > >

> > > My Pulmodude told me what I have is rare and He only gets maybe

4-5

> people a year in his office hence the reason to send me to Iowa City

to

> see this renowned Dr as the Pulmodude put it! The Pulmodude said he

did

> not want me to take any tests that were unnecessary another reason he

is

> sending me to Iowa City.

> > >

> > >

> > >

> > > My Pulmodude believes I need a lung biopsy and if so he told me it

> would be done on my side. He also told me if what they are seeing is

> scar tissue they cannot reverse that but they could try and give me

meds

> that may keep it from getting worse. If it turns out to be

inflammation

> it could be reversed.

> > >

> > >

> > >

> > > The Pulmodude told me these are some BIG DECISIONS! I am very

afraid

> of needing the lung biopsy I have heard most talk about it on here. I

do

> not tolerate anesthesia well, I do not wake up from it too well...and

I

> end up with a severe sore throat and a very very bad cough after

things

> like this. There is a part of me that just does not think my body can

> really handle any more stress than its already going through.

> > >

> > >

> > >

> > > Ohh My sleep apnea test came back as SEVERE APNEA! I had 62

episodes

> an hour,,,my oxygen dropped by 4%. My lowest oxygen was at 44. So Next

> week I get fitted for the mask to wear at bed and they will be

bleeding

> in my oxygen to it when I sleep.

> > >

> > >

> > >

> > > So this is my update thus far! It makes me tired to think about

it!

> HAHA!

> > >

> > >

> > >

> > > Again -Happy Thanksgiving! !

> > >

> > > Donna

> > >

> > > (Iowa)

> > >

> >

>

[Guest guest]

Donna,

The lung specialist Bruce is referring to in his e-mail is Dr. Ganesh Raghu at the University of Washington Medical Center. I am one of his patients and have Idiopathic Pulmonary Fibrosis (IPF). Idiopathic means unknown cause, they can find no autoimune disease or other known cause for my lung scarring. Bruce refers to Dr. Raghu's method of drug treatment as Prednisone but actually his treatment is a combination of medications working together: Prednisone, Azathioprine, and Acetylcysteine and he will tell his patients that its basically a trial, 20% of patients respond to

the medications. I agreed to take the medication treatment because...What if I am one of those 20%? How would I know if I don't try. After 3 months I had some improvement in my breathing tests, but my 6-min walk tests have not improved but remained the same. So, he wants me to remain on the medications for another 3 months. Though there have been some notable side effects, I have not had any severe reactions to the meds.

Unfortunately, the scarring is irreversible, there is no cure or treatment for that. Any treatment for IPF is to slow or try to stop any further scarring and to help treat our symptoms.

I agree with Bruce that your doctor needs to TELL YOU EVERYTHING. As with any chronic condition we, the patient, are ultimately responsible for managing our health. And what type of doctor is he sending you too and for what? You need to know. I would call him ASAP for a phone consult.

I have not had a surgical lung biopsy or VATS. Both Dr. Raghu and my pulmo doc don't think its necessary. What I did have is a lung bronchoscopy, which is a 30-min procedure that allows them to run a tube through your nose down into your lungs and check for inflammation, take a sample of the scarring and collect fluids for evaluation.

It's a lot to learn in the beginning, but I believe in order to get the best treatment we can, we, the patient" need to know as much as we can about our disease in order to mange it well. We are the ones who have to live with it and ultimately we just want to live as normal a life as possible.

C_53_Familial IPF_5/09Washington

To: Breathe-Support Sent: Thu, November 26, 2009 1:15:58 PMSubject: Re: Update on Me

DonnaThe doctors will work with whatever information they have and whateverchoices you make or you just get different doctors. As to treatment itcertainly is different if they find connective tissue diseases. Also,the form of ILD can play a role. Prednisone is known to help some forms,does treat inflammation. Prednisone is believed by many not to help UIPbut then there are doctors who believe in prescribing it anyway.In general the ability or accuracy in determining which ILD you havefrom HRCT's is about 60%. Yours might be better or worse than that. Theability from VATS is about 95%. But people proceed without VATS all thetime. Nothing at all wrong with that choice.As to removing scarring, nothing does that. However, depending on thecause the treatments may slow the progression.Right now your pulmonologist apparently has an opinion that he's notshared with you. I know I'm

repeating myself but if I were his patienthe would share it and would share all tests and labs and would sharenotes he's made regarding my condition. Then you can get someone else toform an independent opinion and see if they concur.As to treating the inflammation showing change if it works and not hurtin the process, thats the problem. There are many like Dr. Raghu (atleast he did in a previous article) who believe you should treat all PFwith Prednisone and if it is effective continue it and assume its a formof PF that Prednisone helps. It its not effective then discontinue itand assume its UIP. If not getting hurt in the process was the case,then that would be great. However, Prednisone does have side effects.Thats why it becomes a personal choice.If you knew prednisone would help, you'd nearly always choose to use it.If you knew it would not help, you'd obviously never try it. Now,

whenyou don't know whether it will help or not, what do you do? Well, takesa lot of information and thought to decide. Have to know what thedoctors think from the available tests and information. Then what arethe odds in your mind it might help, how much do you fear the sideeffects, what are your other conditions, and how much do you feel theneed to try something, even if the odds are against it and it has sideeffects..Good pulmonologists find the choices as complex and personal as Idescribe. They know the decisions are not clear cut. Not on biopsy. Noton prednisone. They accept they don't know it all and what they would domight not be right for you.> > >> > > I am correcting something I typed here! It says I had 62 episodes> when> > tested for sleep apnea..That is wrong...I had 92 episodes an hour.> > >> > > Donna> > > (Iowa)> > >> > >> > >> > >> > > ____________ _________ _________ __> > > From: mischievouskitten mischievouskitten@ ...> > > To: Breathe-Support@ yahoogroups. com> > > Sent: Thu, November 26, 2009 7:12:21 AM> > > Subject: Update on Me> > >> > >> > > First let me start this by saying Happy Thanksgiving to you all! I> > hope Each and everyone has a beautiful day! I have so much to be> > thankful for!>

> >> > > I had the CT scans as ordered,the six minute walk,and the lung> > function,blood workup and the sleep apnea testing. I seen myPulmodude> > > yesterday and hes what I know so far:> > >> > > For 12 years I have been told I have COPD/asthma THIS IS NOT TRUE.I> > have restrictive air. (I can get it out,but hard to get it in). I do> > have Interstitial Lung Disease. My Pulmodude believes he knows what> type> > it is but does not want to guess, he wants me to see a renowned> > specialist in the field who is also a professor as well as Dr inIowa> > City. I do not remember his name LOL but I will let You all know his> > name next week.> > >> > > My 6 min walk ended with me needing 6 liters of oxygen to walk> instead> > of the 3 liters I am on for rest and being up.

That has been changed> now> > to 3 liters when resting and 4 when up. I had the lung function only> 44%> > lung function and only 44% of oxygen getting into blood. (Hope that> made> > sense)...> > >> > > My Pulmodude told me what I have is rare and He only gets maybe4-5> > people a year in his office hence the reason to send me to Iowa City> to> > see this renowned Dr as the Pulmodude put it! The Pulmodude said he> did> > not want me to take any tests that were unnecessary another reasonhe> is> > sending me to Iowa City.> > >> > > My Pulmodude believes I need a lung biopsy and if so he told me it> > would be done on my side. He also told me if what they are seeing is> > scar tissue they cannot reverse that but they could try and give me> meds> >

that may keep it from getting worse. If it turns out to be> inflammation> > it could be reversed.> > >> > > The Pulmodude told me these are some BIG DECISIONS! I am veryafraid> > of needing the lung biopsy I have heard most talk about it on here.I> do> > not tolerate anesthesia well, I do not wake up from it toowell...and> I> > end up with a severe sore throat and a very very bad cough after> things> > like this. There is a part of me that just does not think my bodycan> > really handle any more stress than its already going through.> > >> > > Ohh My sleep apnea test came back as SEVERE APNEA! I had 62episodes> > an hour,,,my oxygen dropped by 4%.. My lowest oxygen was at 44. SoNext> > week I get fitted for the mask to wear at bed and they will be> bleeding>

> in my oxygen to it when I sleep.> > >> > > So this is my update thus far! It makes me tired to think aboutit!> > HAHA!> > >> > > Again -Happy Thanksgiving! !> > > Donna> > > (Iowa)> > >> >>