Re: Introduction

[Guest guest]

>

> I'm KerryAnn , and I live in NC. I joined the group because I

begin

> oral chelation this week for mercury toxicity.

Most doctors use protocols that are extremely harmful. Before you

start on anything check with this group or adult metal chelation.

This group is for support for people who have already decided to use

Andy Cutler's protocol (see his two books in links section, and much

information in the files and links sections). If you are not

following Andy's protocol, then it would be best to post to the adult

metal chelation yahoo group or some other group.

I'm doing it under the

> guidance of a holistic MD.

Don't let that give you a false sense of security. Many MDs have

prescribed harmful treatments for mercury poisoned people.

I joined the group to learn more.

>

> The chelation we're doing is new and not on the market yet.

Sounds dangerous. You don't really want to be the guinea pig do you?

when there is a safe protocol that has cured hundreds of people

already? and can be followed without an MD.

My doctor

> trials different protocols and medications. So I wanted to learn

more about

> the other options, as he told me that this protocol won't get rid of all

> metals, just mercury, and just from the CNS. So we'll have to do a

round of

> a different chelator later in order to deal with whatever the other

tests

> turn up for other metals, and to get the mercury out of the rest of

my body.

>

Sounds like he doesn't know what he is doing and is running human

experiments without the proper approval. If you want to discuss his

protocols, join adult metal because the messages would be off topic in

this group.

J

(moderator)

> Thanks, and I look forward to joining in.

>

> KerryAnn

>

[Guest guest]

P Ellis

instead of alzheimer's, we call it OD -- oxygen deprivation -- lol

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: introductionTo: Breathe-Support Date: Tuesday, June 9, 2009, 10:13 PM

Hi Pink Joyce,I should have started my post with my name - Peggy Ellis (I'll use my last name since I noticed already there is a Peggy in the group). Sorry, everyone. I just read about the other 2 people who just joined (and I admit the names escape me - maybe I should be in the Alzheimer's group as well - LOL) and feel exactly as they so eloquently wrote. I will say that at one point my O2 levels were in the low 80's with exercise but are in the 90's now. I am not sure if the year of inhaled steroids (Flo Vent 220mg 4x daily) did the trick or if I had an acute inflammation that somewhat resolved. The whole diagnosis coming out of the blue is a shock for everyone I am sure. It sure took me for a loop and I have worked in the health care world. I'll keep you all posted about the GERD tests and my results of Echo and Chest CT later in the week. I too wonder how long I'll have this level of functionality and is it a gradual decline or

does it just drop one day. I imagine everyone is different and that other illnesses (like getting a bad cold or something) could play a huge role in that. There are so many different things to consider that it is overwhelming. I'll try to remember names better and reply to your posts. I did not know that I had GERD so I would suggest to everyone to ask their doctor to check them out for this as it does seem to be a bad thing for our precious lungs to get gastric juices in them. Ughhh.In this with you all,Peggy Ellis> > > From: artquilterpeg <artquilterpeg@ ...>> Subject: introduction> To: Breathe-Support@ yahoogroups. com> Date: Tuesday, June 9, 2009, 7:26 PM> > > > > > > > > Hi Everyone. I was diagnosed with ILD a year ago but basically thought the doctor was wrong so I stayed in denial until recently. I might still be in denial on some level. I am seeing a great pulmonologist at University of Washington in Seattle who is researching GERD and ILD. I had a

series of unusual events that occurred that led him to think my ILD might be exacerbated by GERD or maybe caused? He won't be specific. I get the impression that they don't really know if GERD can cause ILD or not. So, this week I am undergoing a host of tests for my lungs, heart and GERD. For the most part I am doing really well and the only medication I am on is omraprazole for the GERD and my hormone replacements. I am able to play tennis but if I run for a few balls in a row my heart rate jumps up really high. It comes back down again quickly so I have decided for now to only play with people who have an understanding of how important it is for me to take my time> between points even though that is breaking the rules of tennis. I am suspecting that I should probably switch to another form of exercise that is less 'fast start'. Every thing I read about this disease is pretty depressing. I'd love to talk to someone else out there who is doing

well who and is stable. I wonder how long I can stay stable and also if anyone has had any success getting their ILD arrested in development by managing their GERD.>

[Guest guest]

Hi Peggy E

Welcome aboard a group host of people with alot of info.. Laughed when i read you play tennis.. Me, as i get told to thick headed. but i say go for all you can do now and ENJOY it. i loved playing tennis and bowling and hiking.. well, 3 weeks ago i went to watch my daughter and grand daughter play.. couldnt take it any longer.. so i got up and served and hit the ball and hit it back. but my brat still can't control the ball and hit it to the other side of the court.. needless to say i did try and then i was done.. but i got to try and hit it.. we laughed as she kept asking if need to call EMTs.. tried to bowl and when feeling better i do alittle not alot .. but i have found i need to try other things... i bowl on the Wi and golf forget it not for me anymore even on a screen... Patti CH,NJ, ipf 7'06, pulm HTN 2'07, raynauds, scleroderma, etc..

Hi Pink Joyce,I should have started my post with my name - Peggy Ellis (I'll use my last name since I noticed already there is a Peggy in the group). Sorry, everyone. I just read about the other 2 people who just joined (and I admit the names escape me - maybe I should be in the Alzheimer's group as well - LOL) and feel exactly as they so eloquently wrote. I will say that at one point my O2 levels were in the low 80's with exercise but are in the 90's now. I am not sure if the year of inhaled steroids (Flo Vent 220mg 4x daily) did the trick or if I had an acute inflammation that somewhat resolved. The whole diagnosis coming out of the blue is a shock for everyone I am sure. It sure took me for a loop and I have worked in the health care world. I'll keep you all posted about the GERD tests and my results of Echo and Chest CT later in the week. I too wonder how long I'll have this level of functionality and is it a gradual decline or

does it just drop one day. I imagine everyone is different and that other illnesses (like getting a bad cold or something) could play a huge role in that. There are so many different things to consider that it is overwhelming. I'll try to remember names better and reply to your posts. I did not know that I had GERD so I would suggest to everyone to ask their doctor to check them out for this as it does seem to be a bad thing for our precious lungs to get gastric juices in them. Ughhh.In this with you all,Peggy Ellis> > > From: artquilterpeg <artquilterpeg@ ...>> Subject: introduction> To: Breathe-Support@ yahoogroups. com> Date: Tuesday, June 9, 2009, 7:26 PM> > > > > > > > > Hi Everyone. I was diagnosed with ILD a year ago but basically thought the doctor was wrong so I stayed in denial until recently. I might still be in denial on some level. I am seeing a

great pulmonologist at University of Washington in Seattle who is researching GERD and ILD. I had a series of unusual events that occurred that led him to think my ILD might be exacerbated by GERD or maybe caused? He won't be specific. I get the impression that they don't really know if GERD can cause ILD or not. So, this week I am undergoing a host of tests for my lungs, heart and GERD. For the most part I am doing really well and the only medication I am on is omraprazole for the GERD and my hormone replacements. I am able to play tennis but if I run for a few balls in a row my heart rate jumps up really high. It comes back down again quickly so I have decided for now to only play with people who have an understanding of how important it is for me to take my time> between points even though that is breaking the rules of tennis. I am suspecting that I should probably switch to another form of exercise that is less 'fast start'. Every thing I

read about this disease is pretty depressing. I'd love to talk to someone else out there who is doing well who and is stable. I wonder how long I can stay stable and also if anyone has had any success getting their ILD arrested in development by managing their GERD.>

[Guest guest]

Hi Patti,

I totally understand what you mean about someone hitting the ball away from you.

I injured my back once because my 'so called' partner kept windshield washering

me (my terms) during warm up and since I wasn't 'warmed up' I ended up at the

chiropractor. Suited her right. Glad you didn't have to go to E.R. I think

when I can't do it any more it'll be fine. I've played since I was 40 and I am

53 so I made it to 3.5 USTA rating and that was my goal all along. Thanks for

the support. This is a tough road. My husband is in denial. He has always

thought of me as the 'healthy' one and he was supposed to be the one to die

young. His family history and his particular body mass index etc. vs mine. I

also did not get this from anything self-induced unless living with parents who

smoked around you from birth to age 18 counts as self-induced. I'm not even

sure that had anything to do with it but you never know. In any case I am glad

I found this group as I do want to talk to others who have been through what I

am going through and also others who might be at the same point as I am.

More tests tomorrow and Friday. I think a lot of these tests are designed by

would be torturers as it is the only legal way to torment people is through

medical tests. Today I get to spend time with my quilt group board (I'm VP) so

that will be fun.

I'm going to have to try to figure out a way to keep all the people in this

group straight. I'm really good with faces and names but not so good with just

text and names so any suggestions for that?

Cheers - Peggy E (53, ILD 1 year ago)

> >

> >

> > From: artquilterpeg <artquilterpeg@ ...>

> > Subject: introduction

> > To: Breathe-Support@ yahoogroups. com

> > Date: Tuesday, June 9, 2009, 7:26 PM

> >

> >

> >

> >

> >

> >

> >

> >

> > Hi Everyone. I was diagnosed with ILD a year ago but basically thought the

doctor was wrong so I stayed in denial until recently. I might still be in

denial on some level. I am seeing a great pulmonologist at University of

Washington in Seattle who is researching GERD and ILD. I had a series of unusual

events that occurred that led him to think my ILD might be exacerbated by GERD

or maybe caused? He won't be specific. I get the impression that they don't

really know if GERD can cause ILD or not. So, this week I am undergoing a host

of tests for my lungs, heart and GERD. For the most part I am doing really well

and the only medication I am on is omraprazole for the GERD and my hormone

replacements. I am able to play tennis but if I run for a few balls in a row my

heart rate jumps up really high. It comes back down again quickly so I have

decided for now to only play with people who have an understanding of how

important it is for me to take my time

> > between points even though that is breaking the rules of tennis. I am

suspecting that I should probably switch to another form of exercise that is

less 'fast start'. Every thing I read about this disease is pretty depressing.

I'd love to talk to someone else out there who is doing well who and is stable.

I wonder how long I can stay stable and also if anyone has had any success

getting their ILD arrested in development by managing their GERD.

> >

>

[Guest guest]

Cool - good to have another excuse when I forget the score or where my car is

parked!

> >

> >

> > From: artquilterpeg <artquilterpeg@ ...>

> > Subject: introduction

> > To: Breathe-Support@ yahoogroups. com

> > Date: Tuesday, June 9, 2009, 7:26 PM

> >

> >

> >

> >

> >

> >

> >

> >

> > Hi Everyone. I was diagnosed with ILD a year ago but basically thought the

doctor was wrong so I stayed in denial until recently. I might still be in

denial on some level. I am seeing a great pulmonologist at University of

Washington in Seattle who is researching GERD and ILD. I had a series of unusual

events that occurred that led him to think my ILD might be exacerbated by GERD

or maybe caused? He won't be specific. I get the impression that they don't

really know if GERD can cause ILD or not. So, this week I am undergoing a host

of tests for my lungs, heart and GERD. For the most part I am doing really well

and the only medication I am on is omraprazole for the GERD and my hormone

replacements. I am able to play tennis but if I run for a few balls in a row my

heart rate jumps up really high. It comes back down again quickly so I have

decided for now to only play with people who have an understanding of how

important it is for me to take my time

> > between points even though that is breaking the rules of tennis. I am

suspecting that I should probably switch to another form of exercise that is

less 'fast start'. Every thing I read about this disease is pretty depressing.

I'd love to talk to someone else out there who is doing well who and is stable.

I wonder how long I can stay stable and also if anyone has had any success

getting their ILD arrested in development by managing their GERD.

> >

>

[Guest guest]

Beverly

can you live with your children while you wait for your house to sell?

i think that would also get you closer to a teaching hospital

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Re: introductionTo: Breathe-Support Date: Wednesday, June 10, 2009, 3:22 PM

Peggy, My grandson lives in Bellevue. He would like me to move there but as you said, it is expensive. Besides that he would soon get tired of hanging out with his old grandmother. We have always been very close and he is all broken up over this disease but he is 25 and has his own life with younger people. I am hoping to move to Gig Harbor where my daughter is. I have sons in Port Orchard and Lynnwood. I am not very active. I am too far from any shopping centers to walk there for exercise. Where my house is I would have to walk on a state highway or a dirt road. I have neuropathy so walking on dirt is too hard and I wouldn't want to walk along that highway. My grandson wants me to go see the mall nears where he lives. I'm not sure of the name but maybe it is the Bellevue Mall. I am going over there to visit my daughter in July. I plan on looking at apartments. I am worried about my house selling though.

My pulmonary doctor told me in January that I have 1 to 2 years to live so I definitely feel like I have been given a death sentence. I would love to meet you when I get over there. Beverley Joy, 71, IPF 1-09, Sjogren's, Fibromyalgia, diabetes, Idaho

From: artquilterpeg <artquilterpeg@ yahoo.com>Subject: Re: introductionTo: Breathe-Support@ yahoogroups. comDate: Wednesday, June 10, 2009, 10:16 AM

Hi Beverly,I am 53 years old and had an acute illness in 2007 that precipitated all the appointments that eventually yielded this diagnosis. I live in Bellevue as my husband's job is in the city and we didn't want him to have to deal with traffic. It is a beautiful area although it is expensive.Let me know when you come and I'll get you a direct # for an appointment at UW. They're good there.How have you been doing since diagnosis? I think the worst part is the initial research of the disease - makes it feel like you've been given a death sentence doesn't it? It would be nice if they could be a little more hopeful.If you get this way, let's get together. :)Warmly,Peggy Ellis> > > > > > > > > From: artquilterpeg <artquilterpeg@ ...>> > > Subject: introduction> > > To: Breathe-Support@ yahoogroups. com> > > Date: Tuesday, June 9, 2009, 7:26 PM> > > > > > > > > > > > > > > > > > > > > > > > > > > Hi Everyone. I was diagnosed with ILD a year

ago but basically thought the doctor was wrong so I stayed in denial until recently. I might still be in denial on some level. I am seeing a great pulmonologist at University of Washington in Seattle who is researching GERD and ILD. I had a series of unusual events that occurred that led him to think my ILD might be exacerbated by GERD or maybe caused? He won't be specific. I get the impression that they don't really know if GERD can cause ILD or not. So, this week I am undergoing a host of tests for my lungs, heart and GERD. For the most part I am doing really well and the only medication I am on is omraprazole for the GERD and my hormone replacements. I am able to play tennis but if I run for a few balls in a row my heart rate jumps up really high. It comes back down again quickly so I have decided for now to only play with people who have an understanding of how important it is for me to take my time> > > between points even though

that is breaking the rules of tennis. I am suspecting that I should probably switch to another form of exercise that is less 'fast start'. Every thing I read about this disease is pretty depressing. I'd love to talk to someone else out there who is doing well who and is stable. I wonder how long I can stay stable and also if anyone has had any success getting their ILD arrested in development by managing their GERD.> > >>

[Guest guest]

Joyce, My daughter has said that I can live with her but it would be difficult. Her house isn't very large and she has the two little girls. I did tell her that I was moving into her motor home this winter but I'm not sure that that would work either. I'll just wait and see if the house sells and then decide. I'm willing to drop the price even more if it would sell it.Beverley Joy, 71, IPF 1-09, Sjogren's, Fibromyalgia, diabetes, Idaho

From: artquilterpeg <artquilterpeg@ yahoo.com>Subject: Re: introductionTo: Breathe-Support@ yahoogroups. comDate: Wednesday, June 10, 2009, 10:16 AM

Hi Beverly,I am 53 years old and had an acute illness in 2007 that precipitated all the appointments that eventually yielded this diagnosis. I live in Bellevue as my husband's job is in the city and we didn't want him to have to deal with traffic. It is a beautiful area although it is expensive.Let me know when you come and I'll get you a direct # for an appointment at UW. They're good there.How have you been doing since diagnosis? I think the worst part is the initial research of the disease - makes it feel like you've been given a death sentence doesn't it? It would be nice if they could be a little more hopeful.If you get this way, let's get together. :)Warmly,Peggy Ellis> > > > > > > > > From: artquilterpeg <artquilterpeg@ ...>> > > Subject: introduction> > > To: Breathe-Support@ yahoogroups. com> > > Date: Tuesday, June 9, 2009, 7:26 PM> > > > > > > > > > > > > > > > > > > > > > > > > > > Hi Everyone. I was diagnosed with ILD a year

ago but basically thought the doctor was wrong so I stayed in denial until recently. I might still be in denial on some level. I am seeing a great pulmonologist at University of Washington in Seattle who is researching GERD and ILD. I had a series of unusual events that occurred that led him to think my ILD might be exacerbated by GERD or maybe caused? He won't be specific. I get the impression that they don't really know if GERD can cause ILD or not. So, this week I am undergoing a host of tests for my lungs, heart and GERD. For the most part I am doing really well and the only medication I am on is omraprazole for the GERD and my hormone replacements. I am able to play tennis but if I run for a few balls in a row my heart rate jumps up really high. It comes back down again quickly so I have decided for now to only play with people who have an understanding of how important it is for me to take my time> > > between points even though

that is breaking the rules of tennis. I am suspecting that I should probably switch to another form of exercise that is less 'fast start'. Every thing I read about this disease is pretty depressing. I'd love to talk to someone else out there who is doing well who and is stable. I wonder how long I can stay stable and also if anyone has had any success getting their ILD arrested in development by managing their GERD.> > >>

[Guest guest]

Hi Beverly,

I don't think you'd like walking in the Bellevue Mall unless you like expensive

stores. It is pretty crowded with self absorbed people and walking there would

be tough for exercise. I know of another place that is unique and fun and you

can play chess for exercise. It has a huge chess board where you move the

pieces physically from one spot to another (they are light weight). It's very

diverse and has a great reasonable priced food court - maybe we can go there

once you get this way.

I sold two homes in down markets. If you want to e-mail me at my e-mail address

I can send you my phone # and we can chat about my approach to it. Both sold

within 45 days and the price was good on both too. Obviously you can't sell

above market but there are things that help a home show nicer than others in the

same price range. I'd love to chat about that next week if you want. I have

nation wide long distance and can call you or I can e-mail you my # and you can

call me if you feel more comfortable with that.

I think you should show your doctor that he is wrong. I don't know where

doctors get off telling people things like that. At any point you could

stabilize right? Maybe next week they'll come up with a cure. We all need hope

and to take someone's hope away is a crime if you ask me. I think all human

beings know when it is time and they are not willing to fight any longer. For

my Dad who died of emphysema (self induced huge smoker - not me though) he was

totally ready and had enough of it by the end. He enjoyed the last days and

still had everyone laughing and lived to be 83 inspite of 40 years of smoking 4

packs a day.

E-mail me at artquilterpeg@... if you want to talk. I've thought about

starting a business to do this but will give you my secrets for free because I

want to help others who are helping me with their support.

Love,

Peggy Ellis (wife, mother, quilter, tennis player, amateur comedienne and ILD

2007, 53 yo) I want to be defined by more than my disease and age!

>

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> > > From: artquilterpeg <artquilterpeg@ ...>

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> > > Subject: introduction

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

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> > > Date: Tuesday, June 9, 2009, 7:26 PM

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> > > Hi Everyone. I was diagnosed with ILD a year ago but basically thought the

doctor was wrong so I stayed in denial until recently. I might still be in

denial on some level. I am seeing a great pulmonologist at University of

Washington in Seattle who is researching GERD and ILD. I had a series of unusual

events that occurred that led him to think my ILD might be exacerbated by GERD

or maybe caused? He won't be specific. I get the impression that they don't

really know if GERD can cause ILD or not. So, this week I am undergoing a host

of tests for my lungs, heart and GERD. For the most part I am doing really well

and the only medication I am on is omraprazole for the GERD and my hormone

replacements. I am able to play tennis but if I run for a few balls in a row my

heart rate jumps up really high. It comes back down again quickly so I have

decided for now to only play with people who have an understanding of how

important it is for me to take my time

>

> >

>

> > > between points even though that is breaking the rules of tennis. I am

suspecting that I should probably switch to another form of exercise that is

less 'fast start'. Every thing I read about this disease is pretty depressing.

I'd love to talk to someone else out there who is doing well who and is stable.

I wonder how long I can stay stable and also if anyone has had any success

getting their ILD arrested in development by managing their GERD.

>

> >

>

> > >

>

> >

>

[Guest guest]

I just searched the trash for this post after seeing it on Beth's answer. I don't know why I got it so late but i already posted an answer. I forgot to print it out though so now i have another chance. Beverley Joy, 71, IPF 1-09, Sjogren's, Fibromyalgia, diabetes, IdahoSubject: Re: introductionTo: Breathe-Support Date: Wednesday, June 10, 2009, 10:28 PM

Hi Beverly,

I don't think you'd like walking in the Bellevue Mall unless you like expensive stores. It is pretty crowded with self absorbed people and walking there would be tough for exercise. I know of another place that is unique and fun and you can play chess for exercise. It has a huge chess board where you move the pieces physically from one spot to another (they are light weight). It's very diverse and has a great reasonable priced food court - maybe we can go there once you get this way.

I sold two homes in down markets. If you want to e-mail me at my e-mail address I can send you my phone # and we can chat about my approach to it. Both sold within 45 days and the price was good on both too. Obviously you can't sell above market but there are things that help a home show nicer than others in the same price range. I'd love to chat about that next week if you want. I have nation wide long distance and can call you or I can e-mail you my # and you can call me if you feel more comfortable with that.

I think you should show your doctor that he is wrong. I don't know where doctors get off telling people things like that. At any point you could stabilize right? Maybe next week they'll come up with a cure. We all need hope and to take someone's hope away is a crime if you ask me. I think all human beings know when it is time and they are not willing to fight any longer. For my Dad who died of emphysema (self induced huge smoker - not me though) he was totally ready and had enough of it by the end. He enjoyed the last days and still had everyone laughing and lived to be 83 inspite of 40 years of smoking 4 packs a day.

E-mail me at artquilterpeg@ yahoo.com if you want to talk. I've thought about starting a business to do this but will give you my secrets for free because I want to help others who are helping me with their support.

Love,

Peggy Ellis (wife, mother, quilter, tennis player, amateur comedienne and ILD 2007, 53 yo) I want to be defined by more than my disease and age!

>

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> > > Subject: introduction

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

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> > > Date: Tuesday, June 9, 2009, 7:26 PM

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> > > Hi Everyone. I was diagnosed with ILD a year ago but basically thought the doctor was wrong so I stayed in denial until recently. I might still be in denial on some level. I am seeing a great pulmonologist at University of Washington in Seattle who is researching GERD and ILD. I had a series of unusual events that occurred that led him to think my ILD might be exacerbated by GERD or maybe caused? He won't be specific. I get the impression that they don't really know if GERD can cause ILD or not. So, this week I am undergoing a host of tests for my lungs, heart and GERD. For the most part I am doing really well and the only medication I am on is omraprazole for the GERD and my hormone replacements. I am able to play tennis but if I run for a few balls in a row my heart rate jumps up really high. It comes back down again quickly so I have decided for now to only play with people who have an understanding of how important it is for me to take

my time

>

> >

>

> > > between points even though that is breaking the rules of tennis. I am suspecting that I should probably switch to another form of exercise that is less 'fast start'. Every thing I read about this disease is pretty depressing. I'd love to talk to someone else out there who is doing well who and is stable. I wonder how long I can stay stable and also if anyone has had any success getting their ILD arrested in development by managing their GERD.

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[Guest guest]

Hi Sher,Let me know. I would love to meet you and chat, enjoy the view and tea there. I think you'd find Dr. Raghu to be extremely honest with you, a good listener and willing to compromise. I'm not the best patient in that I sometimes don't agree to different tests but he still works with me. Good luck - tell them you can have my next appt if they will just call me with the results!PeggySubject: Re: Re: introductionTo: Breathe-Support Date: Thursday, June 11, 2009, 10:25 AM

Peggy...ok, I called and left a msg...we'll see what we will see.

Thanks.

Tea room sounds nice.

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

introduction> > > > > > > > > > > > Hi Everyone. I was diagnosed with ILD a year ago but basically thought the doctor was wrong so I stayed in denial until recently. I might still be in denial on some level. I am seeing a great pulmonologist at University of Washington in Seattle who is researching GERD and ILD. I had a series of unusual events that occurred that led him to think my ILD might be exacerbated by GERD or maybe caused? He won't be specific. I get the impression that they don't really know if GERD can cause ILD or not. So, this week I am undergoing a host of tests for my lungs, heart and GERD. For the most part I am doing really well and the only medication I am on is omraprazole for the GERD and my hormone replacements. I am able to play tennis but if I run for a few balls in a row my heart rate jumps up really high. It comes back down again quickly so I have decided for now to only play with people who have an understanding of how important it is for me to take my time between points even though that is breaking the rules of tennis. I am suspecting that I should probably switch to another form of exercise that is less 'fast start'. Every thing I read about this disease is pretty depressing. I'd love to talk to someone else out there who is doing well who and is stable. I wonder how long I can stay stable and also if anyone has had any success getting their ILD arrested in development by managing their GERD.> >>

[Guest guest]

Hi MamaSher,Your place sounds wonderful - gardens that someone else keeps - sound wonderful to me. You'll love going to see your daughter and having an easier lifestyle will be nice as well. I'm sure you'll be happy once it is all done. I'll see you when you get here.Peggy

From: Sher Bauman <bofus (AT) wbcable (DOT) net>Subject: Re: Re: introductionTo: Breathe-Support@ yahoogroups. comDate: Thursday, June 11, 2009, 10:25 AM

Peggy...ok, I called and left a msg...we'll see what we will see.

Thanks.

Tea room sounds nice.

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

introduction> > > > > > > > > > > > Hi Everyone. I was diagnosed with ILD a year ago but basically thought the doctor was wrong so I stayed in denial until recently. I might still be in denial on some level. I am seeing a great pulmonologist at University of Washington in Seattle who is researching GERD and ILD. I had a series of unusual events that occurred that led him to think my ILD might be exacerbated by GERD or maybe caused? He won't be specific. I get the impression that they don't really know if GERD can cause ILD or not. So, this week I am undergoing a host of tests for my lungs, heart and GERD. For the most part I am doing really well and the only medication I am on is omraprazole for the GERD and my hormone replacements. I am able to play tennis but if I run for a few balls in a row my heart rate jumps up really high. It comes back down again quickly so I have decided for now to only play with people who have an understanding of how important it is for me to take my time between points even though that is breaking the rules of tennis. I am suspecting that I should probably switch to another form of exercise that is less 'fast start'. Every thing I read about this disease is pretty depressing. I'd love to talk to someone else out there who is doing well who and is stable. I wonder how long I can stay stable and also if anyone has had any success getting their ILD arrested in development by managing their GERD.> >>

[Guest guest]

Your test sure sounds mighty uncomfortable!

I'll be watching for your results.

The more I think about the "new" place the better it feels.

They have cards, luncheons, parties, etc for us old farts...you get the scene. Never thought I would be there but I'm really grateful to have an opening. The apts are truly very nice and as clean as a pin. Pleasant light blue carpeting...

It will be ok.

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

introduction> > > > > > > > > > > > Hi Everyone. I was diagnosed with ILD a year ago but basically thought the doctor was wrong so I stayed in denial until recently. I might still be in denial on some level. I am seeing a great pulmonologist at University of Washington in Seattle who is researching GERD and ILD. I had a series of unusual events that occurred that led him to think my ILD might be exacerbated by GERD or maybe caused? He won't be specific. I get the impression that they don't really know if GERD can cause ILD or not. So, this week I am undergoing a host of tests for my lungs, heart and GERD. For the most part I am doing really well and the only medication I am on is omraprazole for the GERD and my hormone replacements. I am able to play tennis but if I run for a few balls in a row my heart rate jumps up really high. It comes back down again quickly so I have decided for now to only play with people who have an understanding of how important it is for me to take my time between points even though that is breaking the rules of tennis. I am suspecting that I should probably switch to another form of exercise that is less 'fast start'. Every thing I read about this disease is pretty depressing. I'd love to talk to someone else out there who is doing well who and is stable. I wonder how long I can stay stable and also if anyone has had any success getting their ILD arrested in development by managing their GERD.> >>

[Guest guest]

WOw Janie...what a story you have to tell. Are you on oxygen? My dad was diagnosed in 2005, but had signs many years before and was misdiagnosed. He was even dx with alzheimers at one time...CRAZY. Glad you joined this group it is very helpfulCyndi (dad pf 12/05)Subject: IntroductionTo: Breathe-Support Date: Sunday, July 19, 2009, 4:06 PM

Hi All,I recently joined the group and have found it to be very helpful. My name is Jane (Janie), I am 55 years old and live in northern Wisconsin. I was diagnosed with IPF in October of 2004--the year I turned 50. What a wake up call that was! The first pulmonologist I saw diagnosed it immediately but said there was nothing they could do for me at their facility and referred me to Mayo Clinic in MN. Luckily, I had a friend that was able to pull some strings and I was

seen at Mayo in 12/04. At that time, I was put on massive doses of prednisone (60 mg at first) and Imuran. I was not able to tolerate Imuran--it made me violently ill--so I was put on CellCept

(2 grams/day). Doctors there thought I was a good transplant candidate since I was healthy except, of course, for my lungs. After going through the evaluation in August of 2005, I was accepted as a candidate and continued with my 3 month evaluations and signed up for every study group that wanted me. In June of 2006, in a routine CT scan for one of the research groups, they discovered a lump in my thyroid. A biopsy revealed that it was "suspicious" so I had part of my thyroid removed in 7/06.. It turned out to be malignant but had not spread so I needed no further treatment. I was inactivated on the list for 6 months to be sure I remained cancer free. After the 6 months, I was #1 on the list and told to have transportation arrangements in order and my bags packed for when I "got the call". Then in Spring of 2008, I started feeling very fatigued, weak and the shortness of breath increased to the point that

I could hardly get out of bed. Blood tests revealed that I was anemic so I again was inactivated on the list and scheduled for an endoscopy and colonoscopy. The colonoscopy revealed a baseball-sized tumor and surgery was scheduled in 5/08. The tumor was malignant but encapsulated so, once again, I needed no chemo or radiation. Best case scenario if you have to have cancer. The bad news is I was taken off the list for 5 years (4 years now) to be sure the cancer doesn't reoccur.Whew. .. . are you still with me? So now I am taking the best possible care I can of myself with wonderful support and love of family and friends. This disease has been a blessing to me in many ways, as strange as that sounds. I've learned to take one day at a time, look for the beauty and good in each day, and to count my blessings.Thanks for listening and I look forward to chatting with all of

you.Janie

[Guest guest]

Janie ..... well I'm glad you missed the bullet instead of having to bite it.

What experiences you have had.

I like your attitude.

Welcome

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Introduction

Hi All,I recently joined the group and have found it to be very helpful. My name is Jane (Janie), I am 55 years old and live in northern Wisconsin. I was diagnosed with IPF in October of 2004--the year I turned 50. What a wake up call that was! The first pulmonologist I saw diagnosed it immediately but said there was nothing they could do for me at their facility and referred me to Mayo Clinic in MN. Luckily, I had a friend that was able to pull some strings and I was seen at Mayo in 12/04. At that time, I was put on massive doses of prednisone (60 mg at first) and Imuran. I was not able to tolerate Imuran--it made me violently ill--so I was put on CellCept (2 grams/day). Doctors there thought I was a good transplant candidate since I was healthy except, of course, for my lungs. After going through the evaluation in August of 2005, I was accepted as a candidate and continued with my 3 month evaluations and signed up for every study group that wanted me. In June of 2006, in a routine CT scan for one of the research groups, they discovered a lump in my thyroid. A biopsy revealed that it was "suspicious" so I had part of my thyroid removed in 7/06.. It turned out to be malignant but had not spread so I needed no further treatment. I was inactivated on the list for 6 months to be sure I remained cancer free. After the 6 months, I was #1 on the list and told to have transportation arrangements in order and my bags packed for when I "got the call". Then in Spring of 2008, I started feeling very fatigued, weak and the shortness of breath increased to the point that I could hardly get out of bed. Blood tests revealed that I was anemic so I again was inactivated on the list and scheduled for an endoscopy and colonoscopy. The colonoscopy revealed a baseball-sized tumor and surgery was scheduled in 5/08. The tumor was malignant but encapsulated so, once again, I needed no chemo or radiation. Best case scenario if you have to have cancer. The bad news is I was taken off the list for 5 years (4 years now) to be sure the cancer doesn't reoccur.Whew. .. . are you still with me? So now I am taking the best possible care I can of myself with wonderful support and love of family and friends. This disease has been a blessing to me in many ways, as strange as that sounds. I've learned to take one day at a time, look for the beauty and good in each day, and to count my blessings.Thanks for listening and I look forward to chatting with all of you.Janie

[Guest guest]

Hi Janie,

Welcome!! My name is Beth. We're so glad you've found the group though I know we're all sorry that you have the need for a group like this.

You've been through a little bit of everything haven't you? The love and support of family and friends is so important and I'm happy that you have had yours stand by you.

I do understand what you mean about this disease being a 'blessing'. It has turned my life upside down and inside out but not all of that is negative. It has changed my perspective and shifted my priorities to the things that matter and that can only be a good thing.

Welcome once again. I hope you find the friendship and support among all these wonderful people that I have.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sunday, July 19, 2009 12:06:48 PMSubject: Introduction

Hi All,I recently joined the group and have found it to be very helpful. My name is Jane (Janie), I am 55 years old and live in northern Wisconsin. I was diagnosed with IPF in October of 2004--the year I turned 50. What a wake up call that was! The first pulmonologist I saw diagnosed it immediately but said there was nothing they could do for me at their facility and referred me to Mayo Clinic in MN. Luckily, I had a friend that was able to pull some strings and I was seen at Mayo in 12/04. At that time, I was put on massive doses of prednisone (60 mg at first) and Imuran. I was not able to tolerate Imuran--it made me violently ill--so I was put on CellCept (2 grams/day). Doctors there thought I was a good transplant candidate since I was healthy except, of

course, for my lungs. After going through the evaluation in August of 2005, I was accepted as a candidate and continued with my 3 month evaluations and signed up for every study group that wanted me. In June of 2006, in a routine CT scan for one of the research groups, they discovered a lump in my thyroid. A biopsy revealed that it was "suspicious" so I had part of my thyroid removed in 7/06.. It turned out to be malignant but had not spread so I needed no further treatment. I was inactivated on the list for 6 months to be sure I remained cancer free. After the 6 months, I was #1 on the list and told to have transportation arrangements in order and my bags packed for when I "got the call". Then in Spring of 2008, I started feeling very fatigued, weak and the shortness of breath increased to the point that I could hardly get out of bed. Blood tests revealed that I was anemic so I again was inactivated on the

list and scheduled for an endoscopy and colonoscopy. The colonoscopy revealed a baseball-sized tumor and surgery was scheduled in 5/08. The tumor was malignant but encapsulated so, once again, I needed no chemo or radiation. Best case scenario if you have to have cancer. The bad news is I was taken off the list for 5 years (4 years now) to be sure the cancer doesn't reoccur.Whew. .. . are you still with me? So now I am taking the best possible care I can of myself with wonderful support and love of family and friends. This disease has been a blessing to me in many ways, as strange as that sounds. I've learned to take one day at a time, look for the beauty and good in each day, and to count my blessings.Thanks for listening and I look forward to chatting with all of you.Janie

[Guest guest]

Oh, good point--I forgot to mention the O2. At rest, I'm at 2.5 and with activity, 5 lpm although lately my sats go down even on 5. Not sure what the next step will be. How is your dad doing? Thanks for the warm welcome. I was kind of shy about joining in. Janie (ipf 10/04)From: Jane Roush <janieann54 (AT) yahoo (DOT) com>Subject: IntroductionTo: Breathe-Support@ yahoogroups. comDate: Sunday, July 19, 2009, 4:06 PM

Hi All,I recently joined the group and have found it to be very helpful. My name is Jane (Janie), I am 55 years old and live in northern Wisconsin. I was diagnosed with IPF in October of 2004--the year I turned 50. What a wake up call that was! The first pulmonologist I saw diagnosed it immediately but said there was nothing they could do for me at their facility and referred me to Mayo Clinic in MN. Luckily, I had a friend that was able to pull some strings and I was

seen at Mayo in 12/04. At that time, I was put on massive doses of prednisone (60 mg at first) and Imuran. I was not able to tolerate Imuran--it made me violently ill--so I was put on CellCept

(2 grams/day). Doctors there thought I was a good transplant candidate since I was healthy except, of course, for my lungs. After going through the evaluation in August of 2005, I was accepted as a candidate and continued with my 3 month evaluations and signed up for every study group that wanted me. In June of 2006, in a routine CT scan for one of the research groups, they discovered a lump in my thyroid. A biopsy revealed that it was "suspicious" so I had part of my thyroid removed in 7/06.. It turned out to be malignant but had not spread so I needed no further treatment. I was inactivated on the list for 6 months to be sure I remained cancer free. After the 6 months, I was #1 on the list and told to have transportation arrangements in order and my bags packed for when I "got the call". Then in Spring of 2008, I started feeling very fatigued, weak and the shortness of breath increased to the point that

I could hardly get out of bed. Blood tests revealed that I was anemic so I again was inactivated on the list and scheduled for an endoscopy and colonoscopy. The colonoscopy revealed a baseball-sized tumor and surgery was scheduled in 5/08. The tumor was malignant but encapsulated so, once again, I needed no chemo or radiation. Best case scenario if you have to have cancer. The bad news is I was taken off the list for 5 years (4 years now) to be sure the cancer doesn't reoccur.Whew. .. . are you still with me? So now I am taking the best possible care I can of myself with wonderful support and love of family and friends. This disease has been a blessing to me in many ways, as strange as that sounds. I've learned to take one day at a time, look for the beauty and good in each day, and to count my blessings.Thanks for listening and I look forward to chatting with all of

you.Janie

[Guest guest]

Hi Beth,Thank you! I live in a remote area of northwest WI so there are no support groups. This is perfect for me! Thanks for being here.Janie (IPF 10/04)Subject: Re: IntroductionTo: Breathe-Support Date: Sunday, July 19, 2009, 4:51 PM

Hi Janie,

Welcome!! My name is Beth. We're so glad you've found the group though I know we're all sorry that you have the need for a group like this.

You've been through a little bit of everything haven't you? The love and support of family and friends is so important and I'm happy that you have had yours stand by you.

I do understand what you mean about this disease being a 'blessing'. It has turned my life upside down and inside out but not all of that is negative. It has changed my perspective and shifted my priorities to the things that matter and that can only be a good thing.

Welcome once again. I hope you find the friendship and support among all these wonderful people that I have.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Jane Roush <janieann54 (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sunday, July 19, 2009 12:06:48 PMSubject: Introduction

Hi All,I recently joined the group and have found it to be very helpful. My name is Jane (Janie), I am 55 years old and live in northern Wisconsin. I was diagnosed with IPF in October of 2004--the year I turned 50. What a wake up call that was! The first pulmonologist I saw diagnosed it immediately but said there was nothing they could do for me at their facility and referred me to Mayo Clinic in MN. Luckily, I had a friend that was able to pull some strings and I was seen at Mayo in 12/04. At that time, I was put on massive doses of prednisone (60 mg at first) and Imuran. I was not able to tolerate Imuran--it made me violently ill--so I was put on CellCept (2 grams/day). Doctors there thought I was a good transplant candidate since I was healthy

except, of

course, for my lungs. After going through the evaluation in August of 2005, I was accepted as a candidate and continued with my 3 month evaluations and signed up for every study group that wanted me. In June of 2006, in a routine CT scan for one of the research groups, they discovered a lump in my thyroid. A biopsy revealed that it was "suspicious" so I had part of my thyroid removed in 7/06.. It turned out to be malignant but had not spread so I needed no further treatment. I was inactivated on the list for 6 months to be sure I remained cancer free. After the 6 months, I was #1 on the list and told to have transportation arrangements in order and my bags packed for when I "got the call". Then in Spring of 2008, I started feeling very fatigued, weak and the shortness of breath increased to the point that I could hardly get out of bed. Blood tests revealed that I was anemic so I again was inactivated on the

list and scheduled for an endoscopy and colonoscopy. The colonoscopy revealed a baseball-sized tumor and surgery was scheduled in 5/08.. The tumor was malignant but encapsulated so, once again, I needed no chemo or radiation. Best case scenario if you have to have cancer. The bad news is I was taken off the list for 5 years (4 years now) to be sure the cancer doesn't reoccur.Whew. .. . are you still with me? So now I am taking the best possible care I can of myself with wonderful support and love of family and friends. This disease has been a blessing to me in many ways, as strange as that sounds. I've learned to take one day at a time, look for the beauty and good in each day, and to count my blessings.Thanks for listening and I look forward to chatting with all of you.Janie

[Guest guest]

Thank you, Sher. . . I look forward to chatting with you.Janie (55; IPF 10/04; WI)Subject: Re: IntroductionTo: Breathe-Support Date: Sunday, July 19, 2009, 4:49 PM

Janie ..... well I'm glad you missed the bullet instead of having to bite it.

What experiences you have had.

I like your attitude.

Welcome

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Introduction

Hi All,I recently joined the group and have found it to be very helpful. My name is Jane (Janie), I am 55 years old and live in northern Wisconsin. I was diagnosed with IPF in October of 2004--the year I turned 50. What a wake up call that was! The first pulmonologist I saw diagnosed it immediately but said there was nothing they could do for me at their facility and referred me to Mayo Clinic in MN. Luckily, I had a friend that was able to pull some strings and I was seen at Mayo in 12/04. At that time, I was put on massive doses of prednisone (60 mg at first) and Imuran. I was not able to tolerate Imuran--it made me violently ill--so I was put on CellCept (2 grams/day). Doctors there thought I was a good transplant candidate since I was healthy except, of course, for my lungs. After going through the evaluation in August of 2005, I was accepted as a candidate and continued with my 3 month evaluations and signed up for every study group that wanted me. In June of 2006, in a routine CT scan for one of the research groups, they discovered a lump in my thyroid. A biopsy revealed that it was "suspicious" so I had part of my thyroid removed in 7/06.. It turned out to be malignant but had not spread so I needed no further treatment. I was inactivated on the list for 6 months to be sure I remained cancer free. After the 6 months, I was #1 on the list and told to have transportation arrangements in order and my bags packed for when I "got the call". Then in Spring of 2008, I started feeling very fatigued, weak and the shortness of breath increased to the point that I could hardly get out of bed. Blood tests revealed that I was anemic so I again was inactivated on the list and scheduled for an endoscopy and colonoscopy. The colonoscopy revealed a baseball-sized tumor and surgery was scheduled in 5/08. The tumor was malignant but encapsulated so, once again, I needed no chemo or radiation. Best case scenario if you have to have cancer. The bad news is I was taken off the list for 5 years (4 years now) to be sure the cancer doesn't reoccur.Whew. .. . are you still with me? So now I am taking the best possible care I can of myself with wonderful support and love of family and friends. This disease has been a blessing to me in many ways, as strange as that sounds. I've learned to take one day at a time, look for the beauty and good in each day, and to count my blessings.Thanks for listening and I look forward to chatting with all of you.Janie

[Guest guest]

Cyndi,

It's so good to see you pop in now and then. How is your Dad doing these days? Please tell him we were asking about him.

And how about you and your family? How are you all?

Hugs,

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sunday, July 19, 2009 12:41:55 PMSubject: Re: Introduction

WOw Janie...what a story you have to tell. Are you on oxygen? My dad was diagnosed in 2005, but had signs many years before and was misdiagnosed. He was even dx with alzheimers at one time...CRAZY. Glad you joined this group it is very helpfulCyndi (dad pf 12/05)

From: Jane Roush <janieann54 (AT) yahoo (DOT) com>Subject: IntroductionTo: Breathe-Support@ yahoogroups. comDate: Sunday, July 19, 2009, 4:06 PM

Hi All,I recently joined the group and have found it to be very helpful. My name is Jane (Janie), I am 55 years old and live in northern Wisconsin. I was diagnosed with IPF in October of 2004--the year I turned 50. What a wake up call that was! The first pulmonologist I saw diagnosed it immediately but said there was nothing they could do for me at their facility and referred me to Mayo Clinic in MN. Luckily, I had a friend that was able to pull some strings and I was seen at Mayo in 12/04. At that time, I was put on massive doses of prednisone (60 mg at first) and Imuran. I was not able to tolerate Imuran--it made me violently ill--so I was put on CellCept (2 grams/day). Doctors there thought I was a good transplant candidate since I was healthy except, of

course, for my lungs. After going through the evaluation in August of 2005, I was accepted as a candidate and continued with my 3 month evaluations and signed up for every study group that wanted me. In June of 2006, in a routine CT scan for one of the research groups, they discovered a lump in my thyroid. A biopsy revealed that it was "suspicious" so I had part of my thyroid removed in 7/06.. It turned out to be malignant but had not spread so I needed no further treatment. I was inactivated on the list for 6 months to be sure I remained cancer free. After the 6 months, I was #1 on the list and told to have transportation arrangements in order and my bags packed for when I "got the call". Then in Spring of 2008, I started feeling very fatigued, weak and the shortness of breath increased to the point that I could hardly get out of bed. Blood tests revealed that I was anemic so I again was inactivated on the

list and scheduled for an endoscopy and colonoscopy. The colonoscopy revealed a baseball-sized tumor and surgery was scheduled in 5/08. The tumor was malignant but encapsulated so, once again, I needed no chemo or radiation. Best case scenario if you have to have cancer. The bad news is I was taken off the list for 5 years (4 years now) to be sure the cancer doesn't reoccur.Whew. .. . are you still with me? So now I am taking the best possible care I can of myself with wonderful support and love of family and friends. This disease has been a blessing to me in many ways, as strange as that sounds. I've learned to take one day at a time, look for the beauty and good in each day, and to count my blessings.Thanks for listening and I look forward to chatting with all of

you.Janie

[Guest guest]

Janie,

I am sorry for your misfortunate reasons for being in this group, but so glad you are with us. I do understand what you said about the many blessings of life that come our way due to IPF. Odd as it seems Janie, these have been the best 4 years of my life. I would never have spent so many wonderrful days with my family and loving friends. As you say, these are days to be cherished and lived one breath at a time.

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

Subject: IntroductionTo: Breathe-Support Date: Sunday, July 19, 2009, 4:06 PM

Hi All,I recently joined the group and have found it to be very helpful. My name is Jane (Janie), I am 55 years old and live in northern Wisconsin. I was diagnosed with IPF in October of 2004--the year I turned 50. What a wake up call that was! The first pulmonologist I saw diagnosed it immediately but said there was nothing they could do for me at their facility and referred me to Mayo Clinic in MN. Luckily, I had a friend that was able to pull some strings and I was seen at Mayo in 12/04. At that time, I was put on massive doses of prednisone (60 mg at first) and Imuran. I was not able to tolerate Imuran--it made me violently ill--so I was put on CellCept (2 grams/day). Doctors there thought I was a good transplant candidate since I was healthy except, of

course, for my lungs. After going through the evaluation in August of 2005, I was accepted as a candidate and continued with my 3 month evaluations and signed up for every study group that wanted me. In June of 2006, in a routine CT scan for one of the research groups, they discovered a lump in my thyroid. A biopsy revealed that it was "suspicious" so I had part of my thyroid removed in 7/06.. It turned out to be malignant but had not spread so I needed no further treatment. I was inactivated on the list for 6 months to be sure I remained cancer free. After the 6 months, I was #1 on the list and told to have transportation arrangements in order and my bags packed for when I "got the call". Then in Spring of 2008, I started feeling very fatigued, weak and the shortness of breath increased to the point that I could hardly get out of bed. Blood tests revealed that I was anemic so I again was inactivated on the

list and scheduled for an endoscopy and colonoscopy. The colonoscopy revealed a baseball-sized tumor and surgery was scheduled in 5/08. The tumor was malignant but encapsulated so, once again, I needed no chemo or radiation. Best case scenario if you have to have cancer. The bad news is I was taken off the list for 5 years (4 years now) to be sure the cancer doesn't reoccur.Whew. .. . are you still with me? So now I am taking the best possible care I can of myself with wonderful support and love of family and friends. This disease has been a blessing to me in many ways, as strange as that sounds. I've learned to take one day at a time, look for the beauty and good in each day, and to count my blessings.Thanks for listening and I look forward to chatting with all of you.Janie

[Guest guest]

Thanks, Jerry. I have to agree with you. . . these last 5 years have been the best of my life also. Our empty nest years are not turning out to be what my husband and I had expected but I wouldn't change them for anything.Take care,Janie (55; IPF 10/04; WI)

From: Jane Roush <janieann54 (AT) yahoo (DOT) com>Subject: IntroductionTo: Breathe-Support@ yahoogroups. comDate: Sunday, July 19, 2009, 4:06 PM

Hi All,I recently joined the group and have found it to be very helpful. My name is Jane (Janie), I am 55 years old and live in northern Wisconsin. I was diagnosed with IPF in October of 2004--the year I turned 50. What a wake up call that was! The first pulmonologist I saw diagnosed it immediately but said there was nothing they could do for me at their facility and referred me to Mayo Clinic in MN. Luckily, I had a friend that was able to pull some strings and I was seen at Mayo in 12/04. At that time, I was put on massive doses of prednisone (60 mg at first) and Imuran. I was not able to tolerate Imuran--it made me violently ill--so I was put on CellCept (2 grams/day). Doctors there thought I was a good transplant candidate since I was healthy

except, of

course, for my lungs. After going through the evaluation in August of 2005, I was accepted as a candidate and continued with my 3 month evaluations and signed up for every study group that wanted me. In June of 2006, in a routine CT scan for one of the research groups, they discovered a lump in my thyroid. A biopsy revealed that it was "suspicious" so I had part of my thyroid removed in 7/06.. It turned out to be malignant but had not spread so I needed no further treatment. I was inactivated on the list for 6 months to be sure I remained cancer free. After the 6 months, I was #1 on the list and told to have transportation arrangements in order and my bags packed for when I "got the call". Then in Spring of 2008, I started feeling very fatigued, weak and the shortness of breath increased to the point that I could hardly get out of bed. Blood tests revealed that I was anemic so I again was inactivated on the

list and scheduled for an endoscopy and colonoscopy. The colonoscopy revealed a baseball-sized tumor and surgery was scheduled in 5/08. The tumor was malignant but encapsulated so, once again, I needed no chemo or radiation. Best case scenario if you have to have cancer. The bad news is I was taken off the list for 5 years (4 years now) to be sure the cancer doesn't reoccur.Whew. .. . are you still with me? So now I am taking the best possible care I can of myself with wonderful support and love of family and friends. This disease has been a blessing to me in many ways, as strange as that sounds. I've learned to take one day at a time, look for the beauty and good in each day, and to count my blessings.Thanks for listening and I look forward to chatting with all of you.Janie

[Guest guest]

HI Beth,I read all the posts, but at times feel overwhelmed with this monster. My dad is doing good, but very tired. He is on 3 - 3.5 Liters now and is still using Liquid. He loves the liquid oxygen, but we need to see how long he can use it...his machine only goes to 4 so we need to see if they have one that goes higher. How are you doing?Does anyone know how is...did she get a transplant. What about Kerri? I haven't heard anything about them lately.I'm going to try and talk my dad into attending a West Coast get together if we have one.Take Care,Cyndi (DAD PF 12.05)

From: Jane Roush <janieann54 (AT) yahoo (DOT) com>Subject: IntroductionTo: Breathe-Support@ yahoogroups. comDate: Sunday, July 19, 2009, 4:06 PM

Hi All,I recently joined the group and have found it to be very helpful. My name is Jane (Janie), I am 55 years old and live in northern Wisconsin. I was diagnosed with IPF in October of 2004--the year I turned 50. What a wake up call that was! The first pulmonologist I saw diagnosed it immediately but said there was nothing they could do for me at their facility and referred me to Mayo Clinic in MN. Luckily, I had a friend that was able to pull some strings and I was seen at Mayo in 12/04. At that time, I was put on massive doses of prednisone (60 mg at first) and Imuran. I was not able to tolerate Imuran--it made me violently ill--so I was put on CellCept (2 grams/day). Doctors there thought I was a good transplant candidate since I was healthy

except, of

course, for my lungs. After going through the evaluation in August of 2005, I was accepted as a candidate and continued with my 3 month evaluations and signed up for every study group that wanted me. In June of 2006, in a routine CT scan for one of the research groups, they discovered a lump in my thyroid. A biopsy revealed that it was "suspicious" so I had part of my thyroid removed in 7/06.. It turned out to be malignant but had not spread so I needed no further treatment. I was inactivated on the list for 6 months to be sure I remained cancer free. After the 6 months, I was #1 on the list and told to have transportation arrangements in order and my bags packed for when I "got the call". Then in Spring of 2008, I started feeling very fatigued, weak and the shortness of breath increased to the point that I could hardly get out of bed. Blood tests revealed that I was anemic so I again was inactivated on the

list and scheduled for an endoscopy and colonoscopy. The colonoscopy revealed a baseball-sized tumor and surgery was scheduled in 5/08. The tumor was malignant but encapsulated so, once again, I needed no chemo or radiation. Best case scenario if you have to have cancer. The bad news is I was taken off the list for 5 years (4 years now) to be sure the cancer doesn't reoccur.Whew. .. . are you still with me? So now I am taking the best possible care I can of myself with wonderful support and love of family and friends. This disease has been a blessing to me in many ways, as strange as that sounds. I've learned to take one day at a time, look for the beauty and good in each day, and to count my blessings.Thanks for listening and I look forward to chatting with all of

you.Janie

[Guest guest]

Don't be shy Janie..this group is great and so welcoming.My dad is on 3-3.5 Liters of oxygen. Do you use liquid?Have a good day!Cyndi (DAD PF12.05)From: Jane Roush <janieann54 (AT) yahoo (DOT) com>Subject: IntroductionTo: Breathe-Support@ yahoogroups. comDate: Sunday, July 19, 2009, 4:06 PM

Hi All,I recently joined the group and have found it to be very helpful. My name is Jane (Janie), I am 55 years old and live in northern Wisconsin. I was diagnosed with IPF in October of 2004--the year I turned 50. What a wake up call that was! The first pulmonologist I saw diagnosed it immediately but said there was nothing they could do for me at their facility and referred me to Mayo Clinic in MN. Luckily, I had a friend that was able to pull some strings and I was

seen at Mayo in 12/04. At that time, I was put on massive doses of prednisone (60 mg at first) and Imuran. I was not able to tolerate Imuran--it made me violently ill--so I was put on CellCept

(2 grams/day). Doctors there thought I was a good transplant candidate since I was healthy except, of course, for my lungs. After going through the evaluation in August of 2005, I was accepted as a candidate and continued with my 3 month evaluations and signed up for every study group that wanted me. In June of 2006, in a routine CT scan for one of the research groups, they discovered a lump in my thyroid. A biopsy revealed that it was "suspicious" so I had part of my thyroid removed in 7/06.. It turned out to be malignant but had not spread so I needed no further treatment. I was inactivated on the list for 6 months to be sure I remained cancer free. After the 6 months, I was #1 on the list and told to have transportation arrangements in order and my bags packed for when I "got the call". Then in Spring of 2008, I started feeling very fatigued, weak and the shortness of breath increased to the point that

I could hardly get out of bed. Blood tests revealed that I was anemic so I again was inactivated on the list and scheduled for an endoscopy and colonoscopy. The colonoscopy revealed a baseball-sized tumor and surgery was scheduled in 5/08. The tumor was malignant but encapsulated so, once again, I needed no chemo or radiation. Best case scenario if you have to have cancer. The bad news is I was taken off the list for 5 years (4 years now) to be sure the cancer doesn't reoccur.Whew. .. . are you still with me? So now I am taking the best possible care I can of myself with wonderful support and love of family and friends. This disease has been a blessing to me in many ways, as strange as that sounds. I've learned to take one day at a time, look for the beauty and good in each day, and to count my blessings.Thanks for listening and I look forward to chatting with all of

you.Janie

[Guest guest]

Cyndi-I use compressed O2, or whatever it's called. You'd think by now I'd know the terms. I have an Invacare with a Homfill II that works well for me. I'm able to fill portable tanks from the concentrator so I can be more mobile. I've already seen how kind and welcoming everyone is so no more being shy. Thanks.Janie (55; IPF 10/04; WI)From: Jane Roush <janieann54 (AT) yahoo (DOT) com>Subject: IntroductionTo: Breathe-Support@ yahoogroups. comDate: Sunday, July 19, 2009, 4:06 PM

Hi All,I recently joined the group and have found it to be very helpful. My name is Jane (Janie), I am 55 years old and live in northern Wisconsin. I was diagnosed with IPF in October of 2004--the year I turned 50. What a wake up call that was! The first pulmonologist I saw diagnosed it immediately but said there was nothing they could do for me at their facility and referred me to Mayo Clinic in MN. Luckily, I had a friend that was able to pull some strings and I was

seen at Mayo in 12/04. At that time, I was put on massive doses of prednisone (60 mg at first) and Imuran. I was not able to tolerate Imuran--it made me violently ill--so I was put on CellCept

(2 grams/day). Doctors there thought I was a good transplant candidate since I was healthy except, of course, for my lungs. After going through the evaluation in August of 2005, I was accepted as a candidate and continued with my 3 month evaluations and signed up for every study group that wanted me. In June of 2006, in a routine CT scan for one of the research groups, they discovered a lump in my thyroid. A biopsy revealed that it was "suspicious" so I had part of my thyroid removed in 7/06.. It turned out to be malignant but had not spread so I needed no further treatment. I was inactivated on the list for 6 months to be sure I remained cancer free. After the 6 months, I was #1 on the list and told to have transportation arrangements in order and my bags packed for when I "got the call". Then in Spring of 2008, I started feeling very fatigued, weak and the shortness of breath increased to the point that

I could hardly get out of bed. Blood tests revealed that I was anemic so I again was inactivated on the list and scheduled for an endoscopy and colonoscopy. The colonoscopy revealed a baseball-sized tumor and surgery was scheduled in 5/08. The tumor was malignant but encapsulated so, once again, I needed no chemo or radiation. Best case scenario if you have to have cancer. The bad news is I was taken off the list for 5 years (4 years now) to be sure the cancer doesn't reoccur.Whew. .. . are you still with me? So now I am taking the best possible care I can of myself with wonderful support and love of family and friends. This disease has been a blessing to me in many ways, as strange as that sounds. I've learned to take one day at a time, look for the beauty and good in each day, and to count my blessings.Thanks for listening and I look forward to chatting with all of

you.Janie

[Guest guest]

Cyndi

As you can get liquid portables to go as high as 15 lpm the liter flow

shouldn't be a problem with liquid.

>

>

> From: Jane Roush janieann54 (AT) yahoo (DOT) com>

> Subject: Introduction

> To: Breathe-Support@ yahoogroups. com

> Date: Sunday, July 19, 2009, 4:06 PM

>

>

>

>

>

>

>

>

>

> Hi All,

> I recently joined the group and have found it to be very helpful. My

name is Jane (Janie), I am 55 years old and live in northern Wisconsin.

I was diagnosed with IPF in October of 2004--the year I turned 50. What

a wake up call that was!

> The first pulmonologist I saw diagnosed it immediately but said there

was nothing they could do for me at their facility and referred me to

Mayo Clinic in MN. Luckily, I had a friend that was able to pull some

strings and I was seen at Mayo in 12/04. At that time, I was put on

massive doses of prednisone (60 mg at first) and Imuran. I was not able

to tolerate Imuran--it made me violently ill--so I was put on CellCept

(2 grams/day).

> Doctors there thought I was a good transplant candidate since I was

healthy except, of

> course, for my lungs. After going through the evaluation in August of

2005, I was accepted as a candidate and continued with my 3 month

evaluations and signed up for every study group that wanted me. In June

of 2006, in a routine CT scan for one of the research groups, they

discovered a lump in my thyroid. A biopsy revealed that it was

" suspicious " so I had part of my thyroid removed in 7/06.. It turned

out to be malignant but had not spread so I needed no further treatment.

I was inactivated on the list for 6 months to be sure I remained cancer

free. After the 6 months, I was #1 on the list and told to have

transportation arrangements in order and my bags packed for when I " got

the call " .

> Then in Spring of 2008, I started feeling very fatigued, weak and the

shortness of breath increased to the point that I could hardly get out

of bed. Blood tests revealed that I was anemic so I again was

inactivated on the

> list and scheduled for an endoscopy and colonoscopy. The colonoscopy

revealed a baseball-sized tumor and surgery was scheduled in 5/08. The

tumor was malignant but encapsulated so, once again, I needed no chemo

or radiation. Best case scenario if you have to have cancer. The bad

news is I was taken off the list for 5 years (4 years now) to be sure

the cancer doesn't reoccur.

> Whew. .. . are you still with me? So now I am taking the best

possible care I can of myself with wonderful support and love of family

and friends. This disease has been a blessing to me in many ways, as

strange as that sounds. I've learned to take one day at a time, look

for the beauty and good in each day, and to count my blessings.

> Thanks for listening and I look forward to chatting with all of

> you.

> Janie

>