1. < MAC & Bronchiectasis

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

Posted by Jen_b @jenblalock, Sep 2, 2017

Tuesday morning I'm going to have a tube inserted for 24 hours to test for GERD. I went to National Jewish who diagnosed GERD as the cause of my bronchiectasis and cavitary lesions. I'm getting this test to confirm this diagnosis. Anyway, I am wondering if I should take someone to drive me home afterward. There is no anesthesia used so I should be able to drive myself, right?

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tdrell | @tdrell | Sep 2, 2017
In reply to @auntnanny "Yes, I had that in Tulsa. It's a little bit more difficult than just the normal..." + (show)
@auntnanny

Yes, I had that in Tulsa. It's a little bit more difficult than just the normal impedence. They did it first -- and then followed it with the 24 hour tubing. At Mayo's they just did the regular impedence but they did have my results of the manometry and they didn't consider doing it over. You will be fine. Where I was in Tulsa the tubing for the manometry was a little larger and felt a little bit harder to do but the nurse doing it had it done to herself every year just so she could remember each thing to tell the patient and she was very good. It is a smaller hospital than where you will be going and probably the equipment where you'll be will be newer. So...... be sure and let me know how you felt after you do it. You'll at least be glad you did and I hope they are able to do as Mayo's did with the overnight impedence and will be able to correlate any problem with reflux. I'll be anxious to know.

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auntnanny and jenablock....your conversations re GERD and the testing and its treatments are fascinating. Since l have been told ...for decades...that l have GERD...did have an esophagram locally that showed slowing ...but none of the other tests....and NJH accepted my diagnosis and the esophagram results....and said my cough was from Gerd silent aspiration and aimed all the treatment...no antibiotics toward the GERD.
they did do a sleep study....l do have sleep obstruction and am on CPAP now.
tdrell

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 3, 2017

@tdrell @jenblalock @auntnanny

I just read all of your posts and it's good to see how persistent you have all been in your search for answers. The fact that you have questioned opinions and followed through with other doctors and tests is a credit to you all. I really appreciate how you have all supported each other through these discussions!

Teresa

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14 replies
auntnanny | @auntnanny | Sep 3, 2017

It is always great to find someone who has already been through what you are facing. When I was ill...... I struggled for 5 years before finally getting smart enough to realize no one around here was familiar with bronchiectasis. I had seen 7 doctors in a 100-mile radius -- pulmonologist (believe it or not), cardiologist, allergists, primary care ....... I had pounds to lose but...... I was so ill I lost 70 pounds. Couldn't eat and I truly thought I was going to die. That was two years ago next month. Mayo's diagnosed within the hour and I've been home -- working with them through their portal with Dr. Moua --- and live a fairly normal life. Have flares and have to go on antibiotics every month or so, but aside from that, I live on a farm/ranch...... with lots of cattle and crops, I cook lunch for the hired guys, I breed and show labradors, I have a real estate business in town...... I'm only saying, I've been able to get back in charge of what I've always done. It was surely questionable for a while. I'm 76 years old in case that makes any difference (I hope not). Ha! I hope this is help to others who might wonder what's ahead for them.

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4 replies
Jen_b | @jenblalock | Sep 3, 2017
In reply to @auntnanny "Yes, I had that in Tulsa. It's a little bit more difficult than just the normal..." + (show)
@auntnanny

Yes, I had that in Tulsa. It's a little bit more difficult than just the normal impedence. They did it first -- and then followed it with the 24 hour tubing. At Mayo's they just did the regular impedence but they did have my results of the manometry and they didn't consider doing it over. You will be fine. Where I was in Tulsa the tubing for the manometry was a little larger and felt a little bit harder to do but the nurse doing it had it done to herself every year just so she could remember each thing to tell the patient and she was very good. It is a smaller hospital than where you will be going and probably the equipment where you'll be will be newer. So...... be sure and let me know how you felt after you do it. You'll at least be glad you did and I hope they are able to do as Mayo's did with the overnight impedence and will be able to correlate any problem with reflux. I'll be anxious to know.

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@tdrell It seems all treatments are focused toward GERD at NJH which makes me a bit skeptical. Although they are the professionals and I do notice certain traits of GERD in myself now yet I never really did before (self fulfilling prophecy?). Being me, I have to go those extra steps and get it as confirmed as possible hence the tests I'm doing Tuesday. I did have an esophagram (I think that's what it was called) at NJH. Is that the one where you drink the liquids and they tip you on the table? It showed very slow motility. That gave me some assurance but not quite enough.

Anyway, it's really great that they did not put you on the meds! That's one inconvenience you can forgo. I can't remember. Have you been diagnosed with NTM? Did they attribute the sleep disturbances to your issues?

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 3, 2017

@auntnanny

Those are very encouraging words for others!

Teresa

REPLY
pfists | @pfists | Sep 3, 2017
In reply to @auntnanny "It is always great to find someone who has already been through what you are facing...." + (show)
@auntnanny

It is always great to find someone who has already been through what you are facing. When I was ill...... I struggled for 5 years before finally getting smart enough to realize no one around here was familiar with bronchiectasis. I had seen 7 doctors in a 100-mile radius -- pulmonologist (believe it or not), cardiologist, allergists, primary care ....... I had pounds to lose but...... I was so ill I lost 70 pounds. Couldn't eat and I truly thought I was going to die. That was two years ago next month. Mayo's diagnosed within the hour and I've been home -- working with them through their portal with Dr. Moua --- and live a fairly normal life. Have flares and have to go on antibiotics every month or so, but aside from that, I live on a farm/ranch...... with lots of cattle and crops, I cook lunch for the hired guys, I breed and show labradors, I have a real estate business in town...... I'm only saying, I've been able to get back in charge of what I've always done. It was surely questionable for a while. I'm 76 years old in case that makes any difference (I hope not). Ha! I hope this is help to others who might wonder what's ahead for them.

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Good to know about these acid reflux tests...I'm going to check of some of these with my Dr!
Shari

REPLY
tdrell | @tdrell | Sep 3, 2017
In reply to @auntnanny "Yes, I had that in Tulsa. It's a little bit more difficult than just the normal..." + (show)
@auntnanny

Yes, I had that in Tulsa. It's a little bit more difficult than just the normal impedence. They did it first -- and then followed it with the 24 hour tubing. At Mayo's they just did the regular impedence but they did have my results of the manometry and they didn't consider doing it over. You will be fine. Where I was in Tulsa the tubing for the manometry was a little larger and felt a little bit harder to do but the nurse doing it had it done to herself every year just so she could remember each thing to tell the patient and she was very good. It is a smaller hospital than where you will be going and probably the equipment where you'll be will be newer. So...... be sure and let me know how you felt after you do it. You'll at least be glad you did and I hope they are able to do as Mayo's did with the overnight impedence and will be able to correlate any problem with reflux. I'll be anxious to know.

Jump to this post

Jenblalock.... I reread what I wrote re my GERD issue.....I wrote NJH did not put me on meds for GERD....I meant to write did not put me on meds for MAC. I have been on Nexium for GERD for decades. They told me to wean myself off it .....which I am hesitant to do.....going to local GI doctor....will ask him re confirming GERD with tests you folks have mentioned.
Since I had had coughing and mucus for 2 years....amoungst other tests had bronchoscopy here locally in Wisconsin where I live.....in July 2016.,..it found MAC and obstructive sleep apnea. NJH 6 months later repeated CAT scan and sputums and concluded I did not have active infection in lungs..MAC was coming from water in our pipes and I was silently aspirating it....hence treatment aimed at weight loss and GERD guidelines...getting CPAP...had sleep study there. TDrell

REPLY
auntnanny | @auntnanny | Sep 3, 2017
In reply to @hopeful33250 "@tdrell @jenblalock @auntnanny I just read all of your posts and it's good to see how..." + (show)
@hopeful33250

@tdrell @jenblalock @auntnanny

I just read all of your posts and it's good to see how persistent you have all been in your search for answers. The fact that you have questioned opinions and followed through with other doctors and tests is a credit to you all. I really appreciate how you have all supported each other through these discussions!

Teresa

Jump to this post

I'm not positive of this, but have been told by more than one doctor that everyone has MAC in their lungs -- without symptoms you don't know. Also, that unless is colonizes, they usually choose to not treat it because the meds are long-term and that it usually comes back. Of course if it's bad enough, they have to go ahead and treat. I don't know the validity of this, but it's what I've been told.

REPLY
tdrell | @tdrell | Sep 3, 2017
In reply to @hopeful33250 "@tdrell @jenblalock @auntnanny I just read all of your posts and it's good to see how..." + (show)
@hopeful33250

@tdrell @jenblalock @auntnanny

I just read all of your posts and it's good to see how persistent you have all been in your search for answers. The fact that you have questioned opinions and followed through with other doctors and tests is a credit to you all. I really appreciate how you have all supported each other through these discussions!

Teresa

Jump to this post

Auntnanny....what you wrote re What Dr said about no treatment unless colonies make sense...add to that CAT scan results and patient symptoms

REPLY
auntnanny | @auntnanny | Sep 3, 2017
In reply to @hopeful33250 "@tdrell @jenblalock @auntnanny I just read all of your posts and it's good to see how..." + (show)
@hopeful33250

@tdrell @jenblalock @auntnanny

I just read all of your posts and it's good to see how persistent you have all been in your search for answers. The fact that you have questioned opinions and followed through with other doctors and tests is a credit to you all. I really appreciate how you have all supported each other through these discussions!

Teresa

Jump to this post

Let's hope that's correct info and that it works !!! I going with it !!

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