GERD and PF???...long post...apologies :>(

[Guest guest]

Hello all -

I was diagnosed with PF in April of this year. I've been short of breath, coughing, having pneumonia/bronchitis multiple times yearly, etc. I have a number of other 'issues' and perhaps this prevented an earlier diagnosis. Coronary artery disease w/multiple 'small' heart attacks/97, TIAs/76-77, diabetes 2/97, GERD/96, loss of one kidney/85, other is in stage 3 CKD/04, glaucoma/07, cataracts/05 (R one removed in May), plus other assorted 'issues'. Needless-to-say, I have 6 doctors and take 'gobs' of meds...at least they keep me going :<)

However, the pulmonologist thinks that the PF is due to a large (apple sized) hernia that lies behind my heart and in front of my lungs. It apparently is filled with stomach fluids and acids that leach/seep into my lungs, causing infections and loss of function. He sent me to another dr. (Gastro at Duke) who sent me to another Gastro at Duke. I had a manometry test (tube through nose down throat to check for presence of acids) which didn't show much. I've had GERD for about 12 years and been on Prevacid and had 7 dilations (to stretch/break up strictures/scar tissue in esophaegus). Now I'm to seen still another Gastro at Duke after an yet another endoscopic test to check acids and look for Barrett's (a malignancy caused by GERD, which I don't think I have). Apparently after all these results are in, they will decide if surgery to repair the hernia will prevent acids from seeping into my lungs and halt or slow the

damage. If not, then they say it will just continue getting worse.

Has anyone else had this sort of thing...or know of someone who has? I'm frustrated that for over 4 mos. I've been from one dr. to another, had endless tests and still know nothing. I'm here in NC until early Aug. when I return to CA for about 6 mos. I had hoped that if surgery was indicated that it could be done before I had to leave..,but that's not in the cards.

Joan M., 70, Raleigh, NC

[Guest guest]

Joan

I've been through much of the nightmare you have on GERD, related

stomach issues, and, yes, the hiatal hernia. Oh and I shook just

thinking of the monometry, the worst test I've ever experienced. My

first CT's which showed PF resulted from my esophagus problems as I'd

had five upper endoscopies, several upper GI's, monomety, various other

clearance tests and swallows and such. It was my neurologist who pushed

for CT to look external to the esophagus and it was those CT's that

first showed swollen lymph nodes and interstitial lung disease although

no one read about the ILD at that time, just reacted to the lymph nodes.

I do need to correct one thing you said about Barrett's Esophagus. It is

not itself a malignancy. It is however a warning, a precursor, to higher

probability of esophagal cancer developing. Even then, the cancer

normally doesn't develop but one monitors so if it does it can be caught

early.

The endoscopies and repeating them is the only way to see how the

treatment is progressing on the acid and what damage is done. I am due a

repeat too.

As to the relationship of GERD to PF, all we know for sure is a

tremendous percentage of us have both. There is a belief by some that

GERD sometimes causes PF. There is a belief that PF sometimes causes

GERD. And, there's a belief that both are independently caused by the

same thing. Certainly this is a belief for many with autoimmune

diseases.

Gastroenterologists do seem to double talk sometimes, talk in vague

terms and move slowly. I know when it comes to the surgery they

definitely do. I know mine always mentions the surgery and always says

he doesn't think I'm a good candidate for it. I'm sure with your other

problems and being older that they would be more hesitant on you. I

think with me its a matter of them continuing to try to control the GERD

(I'm on 80 mg Nexium a day) and if they can do that, they'll stay away

from the surgery. In my case I think other issues of my esophagus also

make them uncertain how much the surgery would benefit me.

I think with any hernia the issue of when or whether to operate becomes

common. My ex wife has had two hernia surgeries (elsewhere in body) and

a third is going to be required. Who knows how fast her hernia will grow

or, if she has the surgery, another will follow.

Now, as to what you can do, all I can say is press the doctors with your

own sense of urgency. Don't let your case just be routine to them and

that means keep pressing to do things as quickly as possible and for

answers. If I scheduled another endoscopy I would schedule the follow up

appointment too and not accept just hearing the results in your drugged

state post endoscopy or a phone call later after any polyp removal or

biopsy. I want face to face. Funny they won't let you drive home after

endoscopy (here they won't perform unless you have a driver and can't be

a taxi or anything) but yet they think you will remember all they tell

you.

So, don't know I'm of any help other than to say I've been dealing with

similar since 2003 as well. The most frustrating part is that I'm

sitting here right now, taking my meds for it, thinking the acid should

be under control, not thinking things have worsened, but, in reality,

having no earthly idea what it looks like in there. So, another upper

endoscopy, here i come. Of course I'll take that any day over the

monometry.

Good luck in getting answers.

>

> Hello all -

>

> I was diagnosed with PF in April of this year. I've been short of

breath, coughing, having pneumonia/bronchitis multiple times yearly,

etc. I have a number of other 'issues' and perhaps this prevented an

earlier diagnosis. Coronary artery disease w/multiple 'small' heart

attacks/97, TIAs/76-77, diabetes 2/97, GERD/96, loss of one kidney/85,

other is in stage 3 CKD/04, glaucoma/07, cataracts/05 (R one removed in

May), plus other assorted 'issues'. Needless-to-say, I have 6 doctors

and take 'gobs' of meds...at least they keep me going :<)

>

> However, the pulmonologist thinks that the PF is due to a large (apple

sized) hernia that lies behind my heart and in front of my lungs. It

apparently is filled with stomach fluids and acids that leach/seep into

my lungs, causing infections and loss of function. He sent me to

another dr. (Gastro at Duke) who sent me to another Gastro at Duke. I

had a manometry test (tube through nose down throat to check for

presence of acids) which didn't show much. I've had GERD for about 12

years and been on Prevacid and had 7 dilations (to stretch/break up

strictures/scar tissue in esophaegus). Now I'm to seen still another

Gastro at Duke after an yet another endoscopic test to check acids and

look for Barrett's (a malignancy caused by GERD, which I don't think I

have). Apparently after all these results are in, they will decide if

surgery to repair the hernia will prevent acids from seeping into my

lungs and halt or slow the damage. If not, then they

> say it will just continue getting worse.

>

> Has anyone else had this sort of thing...or know of someone who has?

I'm frustrated that for over 4 mos. I've been from one dr. to another,

had endless tests and still know nothing. I'm here in NC until early

Aug. when I return to CA for about 6 mos. I had hoped that if surgery

was indicated that it could be done before I had to leave..,but that's

not in the cards.

>

> Joan M., 70, Raleigh, NC

>

[Guest guest]

Oh my goodness Joan, as I said to Joyce one time, if it weren't for bad luck you'd have no luck at all.

I'm sorry you have so much to deal with and I can imagine your weariness from coping.

I don't have any insight for you but want to say I can pray for you. Hopefully the results will be something to 'fix' the problems.

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

GERD and PF???...long post...apologies :>(

Hello all -

I was diagnosed with PF in April of this year. I've been short of breath, coughing, having pneumonia/bronchitis multiple times yearly, etc. I have a number of other 'issues' and perhaps this prevented an earlier diagnosis. Coronary artery disease w/multiple 'small' heart attacks/97, TIAs/76-77, diabetes 2/97, GERD/96, loss of one kidney/85, other is in stage 3 CKD/04, glaucoma/07, cataracts/05 (R one removed in May), plus other assorted 'issues'. Needless-to-say, I have 6 doctors and take 'gobs' of meds...at least they keep me going :<)

However, the pulmonologist thinks that the PF is due to a large (apple sized) hernia that lies behind my heart and in front of my lungs. It apparently is filled with stomach fluids and acids that leach/seep into my lungs, causing infections and loss of function. He sent me to another dr. (Gastro at Duke) who sent me to another Gastro at Duke. I had a manometry test (tube through nose down throat to check for presence of acids) which didn't show much. I've had GERD for about 12 years and been on Prevacid and had 7 dilations (to stretch/break up strictures/scar tissue in esophaegus). Now I'm to seen still another Gastro at Duke after an yet another endoscopic test to check acids and look for Barrett's (a malignancy caused by GERD, which I don't think I have). Apparently after all these results are in, they will decide if surgery to repair the hernia will prevent acids from seeping into my lungs and halt or slow the damage. If not, then they say it will just continue getting worse.

Has anyone else had this sort of thing...or know of someone who has? I'm frustrated that for over 4 mos. I've been from one dr. to another, had endless tests and still know nothing. I'm here in NC until early Aug. when I return to CA for about 6 mos. I had hoped that if surgery was indicated that it could be done before I had to leave..,but that's not in the cards.

Joan M., 70, Raleigh, NC

[Guest guest]

I am so sorry you are feeling the frustration I believe all of us here have. Stick with the group

eventually you will find your situation within a post. Something, I find more true

every day is that, THEY (medical peeps)KNOW VERY LITTLE ABOUT US , THERE ISNT ENOUGH

RESEARCH OR FUNDS OR HELP TO GIVE US COMFORT. Yes, God is good, yes, prayer helps.(I know

as far as my own life with it goes, had I proper care and ON GOING CARE I may still have

been working and earning my own way.

With Warm Regards, Ali Klisser"Be who you are, & say what you feel, because those who mind don't matter, & those who matter don't mind." ~Dr. Suess ~

To: Breathe-Support From: racheljm@...Date: Thu, 10 Jul 2008 07:31:52 -0700Subject: GERD and PF???...long post...apologies :>(

Hello all -

I was diagnosed with PF in April of this year. I've been short of breath, coughing, having pneumonia/bronchitis multiple times yearly, etc. I have a number of other 'issues' and perhaps this prevented an earlier diagnosis. Coronary artery disease w/multiple 'small' heart attacks/97, TIAs/76-77, diabetes 2/97, GERD/96, loss of one kidney/85, other is in stage 3 CKD/04, glaucoma/07, cataracts/05 (R one removed in May), plus other assorted 'issues'. Needless-to-say, I have 6 doctors and take 'gobs' of meds...at least they keep me going :<)

However, the pulmonologist thinks that the PF is due to a large (apple sized) hernia that lies behind my heart and in front of my lungs. It apparently is filled with stomach fluids and acids that leach/seep into my lungs, causing infections and loss of function. He sent me to another dr. (Gastro at Duke) who sent me to another Gastro at Duke. I had a manometry test (tube through nose down throat to check for presence of acids) which didn't show much. I've had GERD for about 12 years and been on Prevacid and had 7 dilations (to stretch/break up strictures/scar tissue in esophaegus). Now I'm to seen still another Gastro at Duke after an yet another endoscopic test to check acids and look for Barrett's (a malignancy caused by GERD, which I don't think I have). Apparently after all these results are in, they will decide if surgery to repair the hernia will prevent acids from seeping into my lungs and halt or slow the damage. If not, then they say it will just continue getting worse.

Has anyone else had this sort of thing...or know of someone who has? I'm frustrated that for over 4 mos. I've been from one dr. to another, had endless tests and still know nothing. I'm here in NC until early Aug. when I return to CA for about 6 mos. I had hoped that if surgery was indicated that it could be done before I had to leave..,but that's not in the cards.

Joan M., 70, Raleigh, NC Need to know now? Get instant answers with Windows Live Messenger. IM on your terms.