New Poster and just got help after 10 months!

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Stormienite
Regular Member


Date Joined Dec 2009
Total Posts : 186
   Posted 12/15/2009 10:17 AM (GMT -6)   
Hi everyone!  Boy, do I have a story for you!  And do you know how long it took me to find an active forum on heartburn???
 
Trying to make a very long story short here. Last Feb I got pneumonia that landed me in the hospital for 3 days. Strange thing was I had no symptoms of being sick other than I was delirious with a fever of 104 and couldn't wake up. After I was released I quit smoking because well, after that long without a cig I would be an idiot not to quit.

As I was healing I began to get shortness of breath and chest pain to the point where I was sure I was going to suffocate. I would leave a note for my husband to make sure he woke me up before he went to work to make sure I wasn't dead.

I went through a volley of nuclear and invasive tests from 2 pulmonologists, cardiologists, ENTs, Gastros, regular Dr and plenty of ER tests. A pint (at least) of blood showed absolutely nothing. VQ scans, cat scans on lungs and stomach, upper GI, endoscopy, video strobe, 24 hr pulse ox, sleep study (because my oxygen sat went down to 80 several times I was on oxygen at night all summer and sleeping on the couch), echo, heart cath so let's see.. 5 Drs I think. 4 hospitals in 2 cities and 10 months. I was referred to Pittsburgh (2 hrs away from me) because my pulmonologist here was very worried about me. I FINALLY got a diagnosis.

First let me say I've had acid reflux for years and I take 2 30mg Prevacid a day plus rolaids. Sometimes when I lay down acid comes up in my throat.  And I only get heartburn at night when I lay down.  I wake up at night choking on bile/acid. I'm 100% sure this is how I got my pneumonia. I aspirated the bile into my lungs while I slept.

OKAY!  Here we go!  I got back from Pittsburgh Friday to see Dr Lega (pulmonologist) after all the zillion tests he made me have.  Now, to tell you exactly what's going on I need a picture.  So I took the picture on my phone from his chart.  Behold!  My vocal chords!
 
Okay the flaps in the center are my actual vocal chords.  Looks like something else doesn't it?  ::cough::  Anyway!  See how it's a nice fleshy color until up at the top it gets red?  Okay, keep that in mind.  Let's move on.  To the right you see like a stick thing..sort of like a little bone.  Sharp corners.  It should be like that up top and on the other side as well.  It's not.  It's flat mush.  And finally above the chords is like an arch.  If you look closely you can see that it's jagged.  Most of what you see has been burned by the acid coming up from my stomach when I sleep.  Gastritus or whatever.
The Dr. said it would be like you've been out in the sun and got a really bad sunburn on your back and someone comes up and pats you on the back.  That's what's happening with my vocal chords.  Heat, cold, food, moisture, scents, any irritants at all is like someone hitting my sunburned back.  It closes up to protect itself and thus my breathing difficulties.
So this has all been caused by stomach acid coming up into my throat when I lay down.  I've been on prevacid for a few years.  95% of the time it works well, but this damage has been done over years and years and years.  I have a hiatal hernia in my stomach as well as Schatzki rings, which my Gastro Dr had stretched out and took a biopsy of when he did my endoscopy. 
I have 3 months to try and reverse this damage with meds and with a speech therapist.  If it's not getting any bettert then I go back to Pittsburgh and get an um.. I think it's a 24 hr ph test?  They stick a tube down your throat into your stomach for 24 hrs to monitor the acid.  Umm.. I said that would be find if he puts me in a coma first.  lol  Anyway, if it doesn't improve then it's stomach surgery.
 

Post Edited (Stormienite) : 12/15/2009 8:20:08 AM (GMT-7)


couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 12/15/2009 6:30 PM (GMT -6)   
Okay, there is a better method for the PH test. It's called the Bravo. You're sedated and they attach it to your esophagus about mid-way, you wear a receiver for two days and the capsule falls off after a few days. I barely felt mine, only when I turned my head to the extreme. Ask for that!

Have they done the manometry test yet on you? Where they feed a tube, with special sensors on it, through your nose down to your stomach? You'll want sedation, but you'll get none. :(

I'm having the surgery next Tuesday.

I also went through three doctors and a battery of tests. My main symptom was coughing all the time and losing my voice. I had those doctors scratching their heads for over three years.

Joy

Stormienite
Regular Member


Date Joined Dec 2009
Total Posts : 186
   Posted 12/15/2009 7:58 PM (GMT -6)   
I'll ask about the Bravo the next time I see my Dr.  I had no idea what the  manometry test was so I just googled it.  OMG I would have a panic attack.  I'd rather they rip open my chest. lol
Rapid Cycling Bipolar Disorder (and about a dozen other things)
300mg Lamictal
90mg Pamalor
60mg Prevacid
2mg Niravam (Xanax)


couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 12/15/2009 9:50 PM (GMT -6)   
I did panic. My doctor didn't tell me what was going to happen. He just said "I'm going to send you to another doctor who does this test. You'll met her for the first time at the hospital for the test".
The first words out of the testing doctor was "Don't hate me. Hate your GI." :)

I managed to get through the test by "going to my happy place". It was tough, but I survived.
The test is extremely important to determine if the the surgery will help or hinder you.

Joy

Stormienite
Regular Member


Date Joined Dec 2009
Total Posts : 186
   Posted 12/15/2009 10:17 PM (GMT -6)   
Bless your heart!  It sounds like agony.  So what did they find?
Rapid Cycling Bipolar Disorder (and about a dozen other things)
300mg Lamictal
90mg Pamalor
60mg Prevacid
2mg Niravam (Xanax)


opnwhl4
Veteran Member


Date Joined Dec 2008
Total Posts : 4961
   Posted 12/15/2009 11:11 PM (GMT -6)   
If they do the wired 24 hr PH study they inset the "wire" the same as a manometry. They usually do it after a manometry to be sure they have the wire exactly positioned above the LES. I believe it is 5 inches. If it isn't there they may get false readings, could be neg. or pos. depending how far away it is. That is the problem with the bravo. They can't accurately place the capsule because everyone is different and they have no way on knowing exactly where the LES is by sight. Has to be done by a pressure reading from the manometry. I've had both a few times and the discomfort of the wired outweighs the inaccuracy of the bravo if you really want to know whats going on in there.
I had the bravo done first and it came back normal. The GI thought that was weird because of my symptoms and how bad my esophagus looked. The next week they did the manometry and wired Ph study to find I had the highest level they had ever seen.

Take care,
Bill

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 12/16/2009 9:50 PM (GMT -6)   
I have a high acid level almost all the time. The manometry test said I had a partially open LES and a third muscle movement in my esophagus.

Joy
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