24 Hr PH test for GERD - question for those who have had this done

Jenablalock....I find your observations about the possibility of stereotyping about GERD at NJH very very interesting...I will be very very cautious about it....l did have a swallow test there by Speech therapy....that l think did not show anything...will check report when l unbury it from notes.
If l get brave at the NJH NTM workshop in Denver on OCtober 21st l might gently ask the question...." Is GERD being the automatic answer for causation in females?"
tdrell

@ling123, I was diagnosed with MAC this past June. I have been taking Famotidine (Pepcid) for 7 or 8 years for GERD. I have rarely to never had heartburn or any symptoms I associated with it. However, I started having intermittent difficulty swallowing food around the time I was diagnosed with GERD, especially if I was eating fast or fairly big pieces of foods like meat. It was like the food got hung up part way down & was VERY painful. Fluids made it worse. The only thing that helped was going to the restroom & gagging myself until I belched or threw up. Turns out I had what is called an Esophageal Stricture, or a narrowing of the esophagus (tube) due to scarring from acid being washed up into the esophagus. This was found during an endoscopy & while there, the Gastroenterologist dilated the esophagus. I recently had another endoscopy & he dilated it again after finding the scarring was building up again & narrowing my esophagus. Sooo, I'd say yes, you can have GERD without knowing it. I have never had any of the tests discussed here, though.
Carolyn

@ling123, Ling, there is silent gerd as well where it presents no symptoms. I had symptoms galore because mine was so bad and chronic for years before it was caught. My esophagus burned so bad that I could hardly walk. When I would walk, it would burn more. I do not know the correlation between moving and my esophagus hurting more. After I had the nuclear scan done, it showed severe erosion at the bottom of my esophagus from years of stomach acid coming up. Probably due to hiatal hynia. I doubt you would need the 24 hr swallow test to prove gerd, they have other ways to check for that. An endoscope is one way, a scan is another.

@windwalker Terri, thanks a million for the explanation. I have read so much about GERD from this group. It seems to be a prevalent issue with people with MAC. I never thought I had GERD because I don't have the symptoms. But reading your post, I think I should talk to my pulmonary doctor about it when I see him next Thursday.

Hi Carolyn, @cld120

Your experience offers some insight into the phenomena of "silent reflux" which many people have but without the traditional symptoms of heartburn, etc. they are not aware of the problem. Thanks for sharing this experience! I'm glad that you are getting some relief from the dilating of the esophagus.

Are there other measures you use, like elevating the head of your bed, etc.?

Teresa

Terri - this is Pam in Boston. I am reading all the posts about GERD - it never occured to me that I might have it - no symptoms... but then you say it often goes hand in hand with MAC and bronciectasis.... you mentioned gerd guidelines - where might I find those? Pam

This is Pam again... have a question for the group: I flew from Boston to SF last week and - direct flight - 6 hours in the air. The plane was empty so I had 3 seats to myself and lay down and went to sleep for about 4 hours - almost fully flat, not sitting up. When I got up to use the restroom I noticed I was very breathless when I walked back to my seat. I took out my oximeter and my level was between 79 and 82 - the stayed that way until the plane began to descend for landing. They went back to 97 then. I never felt like I could not breathe, but it did take me by surprise. I do have sleep apnea and use a cpap and maybe because I was lying down without the cpap my oxygen dropped? Has anyone in the group had this happen while flying? Pam

@pamelasc1 Hi Pam. Yes! I have that happen every time I fly. It happens at the peak altitude in the flight pattern. The air pressure is greatest at the higher altitudes and it compresses your lungs. I have had to fly with oxygen for years. My most recent altitude test showed I could fly without it. So, I tried it, and sure enough my oxygen levels dropped severely and I was on my way to a panic attack. I will not fly without it again. I have an Eclipse personal oxygen concentrator that I use for travel. I have it for travel because I need oxygen at night too. This model is the size of a carry on piece of luggage and has wheels. The smaller models will not work for sleeping because they do not have the forced air flow. It is good for flying and sleeping with.

@pamelasc1, Hi Pam, (I know you are Pam from Boston) You can google 'acid reflux' on the Mayo Clinic.com or just about anywhere. The guidelines are the same. Take an anti-acid capsule 40 mg. 1 hour before your main meal, avoid acidic foods like tomatoe sauce, alcohol, orange juice, etc. (or consume them occassionally) do not eat or drink 3 hours prior to bedtime (that prevents backwash from your stomach into your esophagus), raise head of the bed 6" so that gravity keeps acid lower than your esophagus. You can also purchase a wedge that goes under your pillows to elevate your head if you do not wish to raise the actual bed. Google GERD and acid reflux and many sites will pop up to give you info. I hope you are doing good Pam. Many hugs!

@jenblalock , not sure if you have seen all of these, but they may be helpful.
VIDEOs of the NTM & Bronchiectasis Conference at Georgetown University on May 19, 2017 can now be found on YouTube, in four parts. Here are the links.

AGENDA: https://www.ntminfo.org/images/media/News/ODonnellWelcome.pdf
WELCOME: https://www.ntminfo.org/images/media/News/ODonnellWelcome.pdf

PART 01: https://www.youtube.com/watch?v=THHMhcpl5ww
PART 02: https://www.youtube.com/watch?v=u6AUbVso-zs
PART 03: https://www.youtube.com/watch?v=XmZhfJORfVA
PART 04: https://www.youtube.com/watch?v=tfpou1HAmtk