Re: introduction / Peggy E

[Guest guest]

Hi Peggy,

I'll do that - look at the photos. I also have a photo on my main page (just

learning this Yahoo thing but I also have blogs too). So, if the phone call is

Thursday I will call in. I will have a spaghetti sticking out of my nose so

being on the phone will be better than talking to someone in person as I don't

want to be seen like this. Tomorrow I get a 24 hour stomach acid test done -

lovely, just lovely! ugh

thanks again,

Peggy E . . . you know the rest.

> > >

> > >

> > > 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]

Peggy E

eager to hear about the 24 hour stomach acid test

never heard of it

your emails really make me wonder about GERD

i had two upper GI's, that ruled out acid reflux

but as we have learned with the o2 SATs, levels can change constantly with activity and change in position, awake and asleep

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: introduction / Peggy ETo: Breathe-Support Date: Thursday, June 11, 2009, 1:45 AM

Hi Peggy,I'll do that - look at the photos. I also have a photo on my main page (just learning this Yahoo thing but I also have blogs too). So, if the phone call is Thursday I will call in. I will have a spaghetti sticking out of my nose so being on the phone will be better than talking to someone in person as I don't want to be seen like this. Tomorrow I get a 24 hour stomach acid test done - lovely, just lovely! ughthanks again,Peggy E . . . you know the rest.> > >> > >> > > 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]

Peggy E,

How are they doing your 24 acid test.

I had an acid test done 2 years ago where a transmitter capsule (Bravo PH) was

implanted in my esophagus. Every time I coughed I had to press a button on a

transmitter reciever I kept hooked on my pants. The capsule evetually came loose

and " digested " naturally.

3 days later I took the reciever back to the doctor to have read. They compared

my coughing with my PH levels to see if my coughing attacks were happening

during times of high PH recorded.

I had little reflux and my cough was unrelated.

I'll be interested to read about how your test goes. I'll be thinking of you.

33 FL

IPF dx 1/06

> > > >

> > > >

> > > > 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.

> > > >

> > >

> >

>