Re: Upper GI

July 1, 2008

Bruce... I read often here that acid reflux is common among us but...WHY? What causes the reflux in the first place to be such a common thing?

Since I had the endoscopy I'm still having the stomach pain after eating. A scan of my belly will probably be next. I apparently am producing a LOT of acid. I'm now on 3 meds for it and have increased one of them about double.

MamaSher, age 69. IPF 3-06, OR./ NasturtiumsDon't fret about tomorrow, God is already there!

Re: Upper GI

KathyI'd be more inclined to believe an upper endoscopy is what will comenext than an upper GI, although they may do the upper GI first. Theupper GI is just another of the drink sickening stuff, let them xraythings and nothing invasive or painful. The upper endoscopy is actuallysedating you and using a small camera to look down through youresophagus and to your stomach. It's a very essential test as it can helpdetermine why the slow flow and what the level of acid reflux is as wellas any damage caused by it. As common as these issues are with PFpatients I would think it would be pretty standard. I've had it 5 times.I can tell you that while it sounds bad there is nothing to it at all.It's painless. I've never had any after effects. There is no preparationfor it.>> Well, I had the bloodwork and the GSE done and the last came back> unsatisfactory.........the results are going in to Shands Evaluation> Team this morning and my doctor told me to expect further testing.>>> Did anyone here ever have an Upper Gi? can you tell me what it islike,> please. The Gastric Stomach Emptying Study was strange. Actually> eating the scrambled eggs was the worst...they were terrible!!! and it> turns out that I only have 29% of the 60% expected for someone myage..> in emptying speed over 60 minutes (that is how long it is supposed to> take)...Iam supposed tp empty my stomach much faster than I am,> evidently. I was put on reglan years ago for problems and have> absolutely no symptoms or problems since, but I am wondering about my> next step - a friend told me that the Upper Gi would probably be it.>> Thanks,> Kathy fl> pf.4/07>

July 1, 2008

Sher

Not sure anyone can answer the " why " . There are theories. In fact, some

have even suggested the reflux could be a cause. I think all they know

for sure is its very common and they want very aggressively to treat it

so nothing possible backing into lungs. Now, there is also no concrete

evidence it worsens PF but still its a precaution and the reflux can do

enough damage on its on. Its a very serious but controllable issue.

> >

> > Well, I had the bloodwork and the GSE done and the last came back

> > unsatisfactory.........the results are going in to Shands Evaluation

> > Team this morning and my doctor told me to expect further testing.

> >

> > Did anyone here ever have an Upper Gi? can you tell me what it is

> like,

> > please. The Gastric Stomach Emptying Study was strange. Actually

> > eating the scrambled eggs was the worst...they were terrible!!! and

it

> > turns out that I only have 29% of the 60% expected for someone my

> age..

> > in emptying speed over 60 minutes (that is how long it is supposed

to

> > take)...Iam supposed tp empty my stomach much faster than I am,

> > evidently. I was put on reglan years ago for problems and have

> > absolutely no symptoms or problems since, but I am wondering about

my

> > next step - a friend told me that the Upper Gi would probably be it.

> >

> > Thanks,

> > Kathy fl

> > pf.4/07

> >

>

July 1, 2008

Yes, thanks Bruce, I do know it is indeed a very serious but controllable issue. I was on 4 particular pills a day and now on 8...I'm waitin' for the controllable to happen. lol

Are you feeling ok? Are Dr. appts and whatever staying stable?

MamaSher, age 69. IPF 3-06, OR./ NasturtiumsDon't fret about tomorrow, God is already there!

Re: Upper GI

SherNot sure anyone can answer the "why". There are theories. In fact, somehave even suggested the reflux could be a cause. I think all they knowfor sure is its very common and they want very aggressively to treat itso nothing possible backing into lungs. Now, there is also no concreteevidence it worsens PF but still its a precaution and the reflux can doenough damage on its on. Its a very serious but controllable issue.> >> > Well, I had the bloodwork and the GSE done and the last came back> > unsatisfactory.........the results are going in to Shands Evaluation> > Team this morning and my doctor told me to expect further testing.> >> >> > Did anyone here ever have an Upper Gi? can you tell me what it is> like,> > please. The Gastric Stomach Emptying Study was strange. Actually> > eating the scrambled eggs was the worst...they were terrible!!! andit> > turns out that I only have 29% of the 60% expected for someone my> age..> > in emptying speed over 60 minutes (that is how long it is supposedto> > take)...Iam supposed tp empty my stomach much faster than I am,> > evidently. I was put on reglan years ago for problems and have> > absolutely no symptoms or problems since, but I am wondering aboutmy> > next step - a friend told me that the Upper Gi would probably be it.> >> > Thanks,> > Kathy fl> > pf.4/07> >>

July 1, 2008

Hi gang,

Let me but in about the acid reflux. I had an ulcer9hemmoraged and was close to passing out) and was treated for it. I had acid reflux prior. After recovering the acid reflux was worse. I was then checked for the H-pylori virus which I had. (so did my sister and father as it is hereditary). I was put on 1 m0nth of 300 mg of bactrim and another antibiotic which I can not remember. I am on Prevacid for maintenance purposes now. I would recommend asking to be checked for this as I was so much better after the treatment.

ï»¿ ï»¿ ï»¿ ï»¿ JOE/JOANIE JOE 60 IPF1/2008

GRIFFIN, GA.

-- Re: Re: Upper GI

Bruce... I read often here that acid reflux is common among us but...WHY? What causes the reflux in the first place to be such a common thing?

Since I had the endoscopy I'm still having the stomach pain after eating. A scan of my belly will probably be next. I apparently am producing a LOT of acid. I'm now on 3 meds for it and have increased one of them about double.

MamaSher, age 69. IPF 3-06, OR./ NasturtiumsDon't fret about tomorrow, God is already there!

Re: Upper GI

KathyI'd be more inclined to believe an upper endoscopy is what will comenext than an upper GI, although they may do the upper GI first. Theupper GI is just another of the drink sickening stuff, let them xraythings and nothing invasive or painful. The upper endoscopy is actuallysedating you and using a small camera to look down through youresophagus and to your stomach. It's a very essential test as it can helpdetermine why the slow flow and what the level of acid reflux is as wellas any damage caused by it. As common as these issues are with PFpatients I would think it would be pretty standard. I've had it 5 times.I can tell you that while it sounds bad there is nothing to it at all.It's painless. I've never had any after effects. There is no preparationfor it.>> Well, I had the bloodwork and the GSE done and the last came back> unsatisfactory.........the results are going in to Shands Evaluation> Team this morning and my doctor told me to expect further testing.>>> Did anyone here ever have an Upper Gi? can you tell me what it islike,> please. The Gastric Stomach Emptying Study was strange. Actually> eating the scrambled eggs was the worst...they were terrible!!! and it> turns out that I only have 29% of the 60% expected for someone myage..> in emptying speed over 60 minutes (that is how long it is supposed to> take)...Iam supposed tp empty my stomach much faster than I am,> evidently. I was put on reglan years ago for problems and have> absolutely no symptoms or problems since, but I am wondering about my> next step - a friend told me that the Upper Gi would probably be it.>> Thanks,> Kathy fl> pf.4/07>

July 1, 2008

I have been on prevacid for about 3 years for reflux. I sure know I need it with spicy food or laying down to soon after eating. The danger is food getting into our lungs and causing an infection. Nasty stuff. I am not going to do all those tests anymore. period... Love and Prayers, Peggy IPF 2004, Florida"Worry looks around, Sorry looks back, Faith looks up."

July 1, 2008

Hi all

My name is Jo. I've been reading the board for some time now.

It has been a great confort to me. I had no ideas about IPF, just

that I had it. The GP didn't tell me anything. I went to WebMD and

learned that it is life threating and terminal. WOW. In getting a

pulmonary clearance for surgery they discovered that I needed O2

24/7. Surprise, Surprise, Surprise. The surgery was to repair a

large hernia. All of my stomach and part of small intestine was in

my chest cavity and had been for some years. The VA said it didn't

hurt. When I went to a university they said with my GERD that it had

to be repaired. They think it might have something to do with the PF.

They said I was probably aspirating stomach acid in my sleep and not

knowing it. Let me tell you, I did that once after being put on

Fosamax. It is not something you do and not know it. Most of what I

have learned has been here and at pulmon rehab. That has helped a

lot. My Plumonologist isn't doing many test. I happy with that. I

had so many before the stomach surgery. From what I can tell the

tests results don't help a lot in the treatment process. Any way they

tell me GERD is a contributiong factor and the surgery may slow the

progression. Thanks to all of you for being my strength while

learning to accept this radical change in lifestyle.

Jo

> >

> > Well, I had the bloodwork and the GSE done and the last came

back

> > unsatisfactory.........the results are going in to Shands

Evaluation

> > Team this morning and my doctor told me to expect further

testing.

> >

> > Did anyone here ever have an Upper Gi? can you tell me what it

is

> like,

> > please. The Gastric Stomach Emptying Study was strange. Actually

> > eating the scrambled eggs was the worst...they were terrible!!!

and it

> > turns out that I only have 29% of the 60% expected for someone

my

> age..

> > in emptying speed over 60 minutes (that is how long it is

supposed to

> > take)...Iam supposed tp empty my stomach much faster than I am,

> > evidently. I was put on reglan years ago for problems and have

> > absolutely no symptoms or problems since, but I am wondering

about my

> > next step - a friend told me that the Upper Gi would probably

be it.

> >

> > Thanks,

> > Kathy fl

> > pf.4/07

> >

>

July 2, 2008

Mum

Welcome but also sorry you had to be here. You've been through a lot

recently.

I just wanted to inject a couple of things into the dialogue.

First, you mention GP and other tests and surgery and pulmonologist not

wanting to do many tests but was curious as to on what basis they

diagnosed you as having IPF. Was it CT Scans? I would just want to be

sure, not as to the precise form, but sure it is IPF.

Second, as to the GERD, it is a common believe that it may contribute

but just as common the other way around and since so much is unknown

hard to really know. However, at any rate, controlling GERD is very

important.

Now, as to radical change in lifestyle, I guess it varies with each of

us. I am able so far to do most of what I could or at least what I

really did before, just with oxygen. Now that won't last but the

biggest change for me has been focusing on living and putting nothing

off. Glad you're doing pulmonary rehab.

As to treatments you're right, nothing great, but although I have not

chosen to try Imuran and Prednisone, many have been helped by it. Much

depends on what form of PF. Are you considering pursuing transplant at

all?

Now, I also agree in not spending your life with tests and everything

else, but if I had any doubts about the disease or underlying

possibilities or what to do then I'd definitely spend a little time

going to a top medical school or better to one of the 13 IPF Centers for

Excellence. One day can at least make you feel much better informed and

educated and sure of what is going on. For me it was more than worth it.

Hope you find this a pleasant community of friends who understand.

> > >

> > > Well, I had the bloodwork and the GSE done and the last came

> back

> > > unsatisfactory.........the results are going in to Shands

> Evaluation

> > > Team this morning and my doctor told me to expect further

> testing.

> > >

> > > Did anyone here ever have an Upper Gi? can you tell me what it

> is

> > like,

> > > please. The Gastric Stomach Emptying Study was strange. Actually

> > > eating the scrambled eggs was the worst...they were terrible!!!

> and it

> > > turns out that I only have 29% of the 60% expected for someone

> my

> > age..

> > > in emptying speed over 60 minutes (that is how long it is

> supposed to

> > > take)...Iam supposed tp empty my stomach much faster than I am,

> > > evidently. I was put on reglan years ago for problems and have

> > > absolutely no symptoms or problems since, but I am wondering

> about my

> > > next step - a friend told me that the Upper Gi would probably

> be it.

> > >

> > > Thanks,

> > > Kathy fl

> > > pf.4/07

> > >

> >

>

July 2, 2008

Bruce

Thank you for the welcome. My GP heard the crakles and thought I had

COPD. X-Rays showed scars and then he did a CAT scan the

pulmonoligst confirmed IPF. The biggest change I have to make is not

going back to Kenya. I had taught over there one term last year and

wanted to go back. The elevation is 8,000+ ft. When I came back both

times I was very tired and coughing up blood. The first time I went

to VA and they told me to take 2 preacid. That's when I started to

get medical care from Loma University Medical Center. They knew

the first day that I had a lung problem, but it took a while to Dx

IPF.

I can no longer swim and I doubt that I will be able to do much bike

riding now, but I haven't given up hope. The first 6 months were

very hard. I have been lurking on the board for several months and

have been helped greatly. Like you I consider what is important each

day and try to do that. Actually I think I'm going to enjoy life more

now. At least I can stay out of bed while I have O2 on. I'm going

to DC in Aug. I'm going to try and get a resperonics ever go to use

on plane and while there. The GP wrote Rx for a travel scooter

Monday. I should have that in a few days. Do you have any hints to

make travel easier?

Mum ( Jo)

> > > >

> > > > Well, I had the bloodwork and the GSE done and the last came

> > back

> > > > unsatisfactory.........the results are going in to Shands

> > Evaluation

> > > > Team this morning and my doctor told me to expect further

> > testing.

> > > >

> > > > Did anyone here ever have an Upper Gi? can you tell me what it

> > is

> > > like,

> > > > please. The Gastric Stomach Emptying Study was strange.

Actually

> > > > eating the scrambled eggs was the worst...they were

terrible!!!

> > and it

> > > > turns out that I only have 29% of the 60% expected for someone

> > my

> > > age..

> > > > in emptying speed over 60 minutes (that is how long it is

> > supposed to

> > > > take)...Iam supposed tp empty my stomach much faster than I

am,

> > > > evidently. I was put on reglan years ago for problems and have

> > > > absolutely no symptoms or problems since, but I am wondering

> > about my

> > > > next step - a friend told me that the Upper Gi would probably

> > be it.

> > > >

> > > > Thanks,

> > > > Kathy fl

> > > > pf.4/07

> > > >

> > >

> >

>

July 2, 2008