Introduction

September 13, 2001

Welcome back , I am *permanently* no-mail but it doesn't stop me

for being a talkative member on here!

Ruthie (ANT and BFC, NW London)

> or should I say re-introduction. I was on coffee when it first

started, and

> have been no-mail for a long time. I have just come back and been

lurking,

> so thought it was time to stick my head up.

>

> I am , Mum of 6.5 and 3.75. I am an NCT BFC, and

have

> held down a variety of other roles in my time. I was an English

teacher

> before children and now work part time as a tutor, as I can fit it

round DH

> being at home for the children. I live in South East London,

although I'm

> originally from Ireland.

>

> It's good to see some names I recognise from coffee from ages ago,

and even

> a few faces. I met Caroline at a coffee get together at her house.

>

> I don't know what else you want to know about me, but if you want to

know

> just ask. I've yet to see if I can cope with the volume of mail,

along with

> everything else in my life so please bear with me if I'm quiet!

> Rabin-

September 14, 2001

Introduction

Hi lisa, I'm Liz and have 2 kids & , nos.3 on its way (Nov),

I,m new to the list so thought I,d introduce myself to you and anyoneelse

who missed it 1st time around.

I, 30 and live with DH, Ian who works in the steel industry (Yes, we still

have a steel industry in Sheffield!!)

DD & DS were both born and home, hopefully babe will be too.

I' m chair of my local branch + PNSGL & co-coordinator + mag editor,so I,'m

quite busy usually.

I'm thinking about ante-natal TT next year but may see how new babe fares

1st

welcome back Liz Nicholls

SAHM 4, 2, new babe Nov

Sheff Chair, PNSGL, Editor

September 26, 2001

> Hi,

>

> just thought I would introduce myself. I am a new member of the NCT

> and a new first-time mum. My little boy is 10 weeks old and so far so

> good. We live in Norfolk and belong to the Norwich branch. I work in

> computing (when I am not on maternity leave) so this seemed a natural

> place to gravitate to.

>

> I look forward to making friends and picking up useful tips.

>

Hi ,

Welcome to the list. I'm not that far from you, in north Cambridgeshire,

near Wisbech.

Hannah, 27

Mum to Bethany 7, Lawrence 5 1/2, Verity 3, Alfie 7 months

Visit me on the web at :-

http://hannahshome.20m.com

September 27, 2001

> Small world. I grew up just over the border in Lincolnshire -

Wisbech

> was our local town, altouhgh I went to school in Spalding. Mum

still

> lives there.

>

LOL my Dad's family are from the Wisbech area and DP is also from

Norfolk funny really that we should meet each other and live in North

Wales!!!!!!

Anyone know any Granger's or Attree's?

Sonjia

September 27, 2001

Hi ad welcome ;o)

Lonnie Phoebe & Eloisa's mama

& expecting a Christmas delivery...

My therapist told me the way to achieve true inner peace is to finish what you

start.

So far today, I have finished 2 bags of chips and a Chocolate cake.

I feel better already.

October 14, 2005

Thank you Deb and I hope that your husband continues feel ok during

the radiation. Good luck!

> Hi -

> My name is and my sister, , was diagnosed with Stage III

> (two lymph nodes, no obvious mets) colorectal cancer in June of

this

> year. She is 46 years old and is probably the healthiest people I

> know, so it was quite a shock for us to learn that she has this

> disease. She had surgery to remove the tumor and some

colon/rectum in

> July and she just completed her 4th chemo session (5-FU,

Leucovorin,

> and Oxaliplatin every two weeks.) She has a few weeks off of chemo

> before she starts her 5 week radiation and 5-FU treatment. I was

> wondering what experience people have had during the radiation

> treatment. I know everyone experiences these things little

> differently, but I was hoping to get a handle on what to expect

for

> her. This group offers such great support, and I'm thankful that

> you're here!

>

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

> Yahoo! Music Unlimited - Access over 1 million songs. Try it free.

>

October 14, 2005

Hi Ingrid -

Thank you for the prayers! is feeling ok and seems to be

tolerating the chemo but she's having a hard time knowing what to

expect from her bowels. She has a lot of pressure seems to be

constipated a lot except right after the chemo treatments. She just

can't be productive and it's driving her bonkers. She has tried

laxatives and eats fiber rich food but just seems to get a lot of

painful gas from that. I think she's going to try Beano and Gas-x.

I have a feeling that the radition is going to cause more problems

for her too.....

Thanks for asking and again, for the prayers!

> >

> > Hi -

> > My name is and my sister, , was diagnosed with Stage

III

> > (two lymph nodes, no obvious mets) colorectal cancer in June of

> this

> > year. She is 46 years old and is probably the healthiest people

I

> > know, so it was quite a shock for us to learn that she has this

> > disease. She had surgery to remove the tumor and some

colon/rectum

> in

> > July and she just completed her 4th chemo session (5-FU,

> Leucovorin,

> > and Oxaliplatin every two weeks.) She has a few weeks off of

chemo

> > before she starts her 5 week radiation and 5-FU treatment. I

was

> > wondering what experience people have had during the radiation

> > treatment. I know everyone experiences these things little

> > differently, but I was hoping to get a handle on what to expect

for

> > her. This group offers such great support, and I'm thankful

that

> > you're here!

> >

>

October 14, 2005

Hi Jan -

I'm sorry that your husband is feeling so sick from his radiation

and chem treatment. Will the oncs keep him on his radiation

schedule or back off a little now that he's having side effects like

this or do they continue and try to manage the side effects?

There are so many ways to treat this disease depending upon the

location and stage and there are so many different side effects.

I hope your husband feels better soon and gets his appetite back.

>

> >>>>>every two weeks.) She has a few weeks off of chemo

> > before she starts her 5 week radiation and 5-FU treatment. I was

> > wondering what experience people have had during the radiation

> > treatment. >>>>>

>

> Hi ,

> Welcome to the group. I am a relative newcomer, caretaker to

husband with

> stage III rectal cancer. Bill just had the 15th of 28 radiation

treatments

> today. He also takes Xeloda (oral chemo) twice daily. In his

words the

> first two weeks were a piece of cake. He has had very minor

nausea one time

> and mild fatigue until this week. He says now he just

feels 'knocked out'

> by the treatment and today he came home and went to bed! This is

a man who

> has never ever went to bed in the daytime so I know how exhausted

he is. He

> has also began losing his appetite the past two days. His weight

loss has

> been four pounds a week and he has been eating huge amounts until

yesterday.

> I also make big shakes of protein power, half & half, fruit, and

sometimes

> peanut butter. Today he tried to eat but just didn't manage much

at all.

> He also drinks the commercial 'shakes' but they are now making him

> nauseated. He has some hair thinning but not much. His main

discomfort is

> the feeling of burning inside the rectal area and now has

cramping which he

> says is quite painful with each bowel movement which is many many

times day

> and night. Last night he started sweating heavily. So as he

completes the

> third week, the side effects of radiation are beginning to show

up. This

> may be entirely different from what someone else will experience

but so far

> he has followed right along the time-frame and symptoms we were

told to

> expect.

>

> Jan

>

October 14, 2005

,

Seems like my experience was right on track with Jans husbands side effects.

Initially first 2-3 wks was piece of cake but then extreme exhaustion came.

I was sleeping from 18-20 hrs a day-some days I could not even pick my head up

off the bed then when I was at the end of 3rd wk beginning of 4th wk of

radiation I developed an ileus causing me to throw up everything I tried to put

down-even sips of water. Also watery diarrhea constantly-finally after trying my

hardest to fight this " bug " at home for 12 days on my own I developed a fever

of over 104, I was admitted to hosp where I spent another 5 days continuing

with the same side affects before I fianlly made the turn towards better. (I

did take an injection for the diarrhea called Sandestatin) It was a SQ injection

like an insulin shot.Anyways, Well Wishes for you,take care and know that

better days are coming.Also Jan the same for your hubby, too. Better Days Lie

Ahead!!!Stay Positive and keep your eyes focused on the Lord.

Sincerely,

Averi

October 17, 2005

Hi , I am Praying for . Have you tryed to talk to her about

joining our group. She might enjoy herself here with all the positive

survivors here. And she can also talk about how she is feeling. She

is very lucky to have you for a sister. You sound like you have been

an excellent caregiver. Praying for you too. Ingrid

> > >

> > > Hi -

> > > My name is and my sister, , was diagnosed with Stage

> III

> > > (two lymph nodes, no obvious mets) colorectal cancer in June of

> > this

> > > year. She is 46 years old and is probably the healthiest

people

> I

> > > know, so it was quite a shock for us to learn that she has this

> > > disease. She had surgery to remove the tumor and some

> colon/rectum

> > in

> > > July and she just completed her 4th chemo session (5-FU,

> > Leucovorin,

> > > and Oxaliplatin every two weeks.) She has a few weeks off of

> chemo

> > > before she starts her 5 week radiation and 5-FU treatment. I

> was

> > > wondering what experience people have had during the radiation

> > > treatment. I know everyone experiences these things little

> > > differently, but I was hoping to get a handle on what to expect

> for

> > > her. This group offers such great support, and I'm thankful

> that

> > > you're here!

> > >

> >

>

October 17, 2005

Averi, I really wanted to thank you for your positive post!! Ingrid

>

> ,

> I still deal with the diarrhea nearly every day. I am 34 yrs old,

a mother

> of 3 ages 15 1/2,14, and 10,and have had to even resort to the

depends! But am

> so thankful I am alive!!!!!

> I am a survivor of stage 4 colon cancer with mets to the liver and

if

> statistics were the rule, I would not be alive today. I am

approaching my 1 yr

> anniv. of cancer free Oct 30. I am not sure what your sisters

story is but let her

> know this IS a beatable disease and to stay as positive as she can.

God will

> lead the way. I know you will be a big help to her when you get

there, have a

> safe trip.

> Averi

>

June 9, 2009

Hi and welcome!

I'm going to guess from your email address that your name is Peg. Is that right? I'm Beth and I just want to welcome you to our little community. I hope that you find the support, information and friendship here that I and many others have.

I'm happy to hear that you are getting your care at the University of Washington. It's always best to see specialists in interstitial lung disease if at all possible. It does seem that GERD and ILD's often go hand in hand. It's a bit of a chicken vs egg puzzle....they've not really sorted that out. I also control my gerd with omeprazole, 20mg twice a day.

I'm assuming since you play tennis that you are not on oxygen. Is that correct? Have you monitored your oxygen sats when you play at all? The main thing to concern yourself with is maintaining oxygen levels above 90 at all times. This protects your heart and all your other organs from oxygen deprivation. When you fall below 90 for more than a few minutes organ damage begins. So that's the thing to be most on the lookout for. If you don't need oxygen now, you might want to purchase an oximeter so that you can keep an eye on the situation and report changes to your doctor.

I know that others will welcome you also. I'm sorry that you had reason to look for us but since you did I'm happy you found us!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Tuesday, June 9, 2009 7:26:51 PMSubject: 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.

June 9, 2009

hello artquilter peg, welcome, sorry you need us, but glad you found us

sounds like you already go to a teaching hospital with a dept that specialized in ILD

at pulmonary rehab a couple of years ago, there was a lady who used a small liquid portable when she played tennis -- not a helios, but i don't know what kind

there is a lady in my neighborhood who had a problem with either GERD or a hernia causing the gerd, she had surgery and her coughing decreased tremendously, this was last year and i don't remember the details

do you have an oximeter? the thing you put on your finger to measure your o2 saturation and heart beat-- if not we recommend that you get one and use it while playing tennis to keep an eye on your o2 levels, you want to keep them above 90

someone else in the group will give you an address for an oximeter

and someone else in the group will explain why you need to keep an eye on your o2 levels

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: introductionTo: Breathe-Support 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.

June 9, 2009

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

>

> Subject: introduction

> To: Breathe-Support

> 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.

>

June 9, 2009

I live in Oregon, about 25 miles south of Portland. I'll be going to UWMC too when my name comes up for appt. I'm on the 'waiting list'.

I was dx over 3 years ago and have remained fairly stable. Whatever form of PF I have it is slow progressing. I'm anxious to find out the strain.

For me and for others on the board who may be like me but can't/don't go to a teaching hospital.

What is your name and in what state do you live?

Welcome to our board. We'll get acquainted as time goes by. You're in the best place you can be as we share our common disease.

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.

June 9, 2009

Hello Peggy, Where do you live in Washington? Are you in Seattle? I moved here to Idaho 5 years ago. I have my house for sale and I want to move back to that area. Either Gig Harbor or Port Orchard. When I get there I plan to go to UWMC. So far there is no luck selling the house though. I found out I had PF in January. It is a very big shock. I'm so sorry that it happened to you. How old are you?Beverley Joy, 71, IPF 1-09, Sjogren's, Fibromyalgia, diabetes, IdahoSubject: Re: introductionTo: Breathe-Support Date: Tuesday, June 9, 2009, 7:13

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.

>

June 9, 2009

Hi Peggy E., Welcome. I am so sorry you had the need to find us. I have been on the board for quite a while and it nevergets easier to know another has been diagnosed with ILD.. miserable monster disease. I hope you do take care of yourself.Be sure to watch your saturation. Ask anything you want. You will get an answer before long. This is a wonderful group. Best information anywhere.Dr.s included. We live with this. Our Dr's know about the disease but we know about living with it. So ask away.Again Welcome. And God Bless. Love and Prayers, Peggy IPF 2004, FloridaWorry looks around, Sorry looks back, Faith looks up. 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.

June 9, 2009

Peggy E...I just want to add my

"Welcome to the Air Family"

We've all been where you are and know the feelings of shock at the DX!

We are a group of very smart and caring people who try to share our

information,

laughs and even anger when needed.

Just know that we are here!!!!

Welcome again and keep playing that tennis

...

..I tried that about 25 years ago!

..

My large muscle coordination is so bad!!! I tried golf too and could

not hit a stationery ball

let alone a moving one. I couldn't hit a base ball either!!!

However I'm really good at hand work..needlepoint, knitting, crocheting

and pottery!

You know the stuff that involves sitting!!!

All nice small eye -hand coordination things!

We all have out talents.

If you quilt and play tennis you must really be coordinated!!!

Z fibriotic NSIP/05

Z 65, fibriotic NSIP/05/PA

And

“mild” PH/10/07 and Reynaud’s too!!

No,

NSIP was not self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to Darah and Sara

“I’m

gonna be iron like a lion in Zion” Bob Marley

Vinca

Minor-periwinkle is my flower

artquilterpeg wrote:

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

>

> Subject: introduction

> To: Breathe-Support

> 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.

>

June 10, 2009

Hi ,

I started quilting in 2004 but had sewed all my clothes in middle and high

school then quit that until 2004 when I decided I wanted to make some art quilts

for my walls. Unfortunately since then I have moved 4 times and am in the

middle of a house construction project that continues to keep me from doing my

passion. I am not that fabulous at tennis and it is getting worse. I can play

well if someone doesn't make me hit more than 6 or so balls in a point. After

that I am O2 deprived (I think) and have confused thinking for awhile and during

that time will lose a lot of points. I will get a heart rate monitor and an

O2 monitor and use them when I play.

I'm so grateful to find this group. It's nice to know that there are others

(almost wish there weren't though as it is a terrible thing to wish this on

others) going through this. The lack of knowledge about what causes this and

what can be done to prevent it, cure it etc. is awful. I wonder why there isn't

more exposure? I'm still being hopeful that the GERD has a big role in mine but

maybe I am still toying around with denial.

I wish you lived close as it would be fun to get together - I could use a mentor

for my knitting!

Personally I think golf is harder so don't beat yourself up. I used to tell

people (I guess I still would) that if you want to play tennis you have to give

it a good go for at least a full year several times per week. So, there you

have it - you could have been good but maybe it is a blessing that you didn't as

that way you didn't have to give it up! LOL

Cheers - Peggy E

> > >

> > > From: artquilterpeg <artquilterpeg@>

> > > Subject: introduction

> > > To: Breathe-Support

> > <mailto:Breathe-Support%40yahoogroups.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.

> > >

> >

>

June 10, 2009

Hi Peggy,

It's nice to have another Peggy too! I'm sorry that you too are in this

boat however.

Thanks for the nice welcome. I will take care of myself. I am a pretty healthy

person for the most part and have never smoked. Actually it started rather

acutely after a trip to the desert but wasn't Valley Fever or any of a host of

other things. I'm going to get this GERD under control and see how that

contributes to the overall progression. I am hoping that it is a big factor in

my particular ILD. I am not keen about the biopsy. The doctor wants me to have

it but I am just not feeling all that badly so why risk a bunch of stuff that

might actually exacerbate the problem?

Am I to understand that you were diagnosed in 2004? If so, how has your

experience been? Are you stable? Is stable a state we can achieve? Everything

I read is so gloomy but my doctor seems more positive. I want to know because

if I am going to get way worse in a few years I want to do what I can in terms

of traveling etc. now but if I can stay stable for a decade or more I'd probably

wait as $$$ is rather tight at the moment too.

There seems to be so much to contemplate and also to prioritize. Until recently

I really didn't think like this at all. I just lived like it would go on

forever and now I feel like I should make more choices about what I really want

to do with my time. I guess I should always have lived that way but it takes

something like this to focus me I guess.

I'm rambling - sorry. I might start a blog for this. I need to eat as my ride

is coming in 30 minutes and then off to the quilt board meeting I go!

Thanks again - Peggy Ellis

>

> 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.

>

June 10, 2009

Hi MamaSher,

I see Dr. Ganesh Raghu who is an ILD specialist and not a student but a

professor there. He is blunt but honest. He takes time and doesn't seem rushed

with me. I have worked in health care so I was lucky to have gotten a personal

referral to him by a doctor friend of mine in Denver who seemed to understand

better than I did at the time the seriousness of my condition. The desk # for

him is and his nurses are Carolyn and . Maybe you could

call directly and get an appointment. Tell them I recommended him. If you have

Pulmonary Hypertension there is another doctor there that specializes in that

and his name is Ralph I believe. You could use the same number and ask

who you should see.

I'm glad you are stable. I guess that is the most any of us can hope for

although I did recover quite a bit of my diffusion from the acute episode I had

in 2007.

Let me know when you come to Seattle - maybe I can meet you for lunch there at

the hospital since you'll probably have a full day. It would be nice to visit

in person.

Good luck,

Peggy Ellis

>

> I live in Oregon, about 25 miles south of Portland. I'll be going to UWMC too

when my name comes up for appt. I'm on the 'waiting list'.

> I was dx over 3 years ago and have remained fairly stable. Whatever form of PF

I have it is slow progressing. I'm anxious to find out the strain.

> For me and for others on the board who may be like me but can't/don't go to a

teaching hospital.

> What is your name and in what state do you live?

> Welcome to our board. We'll get acquainted as time goes by. You're in the best

place you can be as we share our common disease.

> MamaSher; 70, IPF 3-06, OR.

> Nasturtiums

> Don't fret about tomorrow, God is already there!

>

> introduction