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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Jen_b | @jenblalock | Sep 4, 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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@barbie46 You sound like a good many people on this forum. It sounds like you've had most of the same tests we've all had and I'm glad that your MAC is cured. I do the 7% saline also although I really don't cough much anymore unless I get pneumonia or bronchitis. I took MAC drugs for 15 months and it got rid of the MAC for me too. My lungs are damaged with some bronchiectasis and a couple of cavitary lesions but my oxygen level is still very high as if they weren't damaged at all. I used to run (and plan on getting back to it) so I credit that for my good lung capacity even though they are damaged.

I'm sorry that you lung capacity is so low. Has the doctors given you any exercises to do to increase the capacity? I'm not really sure how that works or if it is possible but just wondering? I do know that I am supposed to work out so that my heart rate gets up and I am breathing heavily. It helps clear the lungs.

My understanding is that the CPAP is to help with sleep apnea if you've been diagnosed with that. My sis-in-law uses it and although she doesn't notice any immediate results she said after a few weeks that she feels less tired and more energetic.

Best to you.

REPLY
Jen_b | @jenblalock | Sep 4, 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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@barbie46 As far as who or what do I believe. I can only speak for myself but I take what the local specialists recommends and also what the National Jewish specialist recommends. Then take into account what I consider their biases. I also do my own research and try to make the best decision based on that. I also have requested to be referred to other doctors, such as the GI doctor to get the 24 hour PH test to help me confirm diagnosis.

The way I see it, no one cares about my health as much as I do. To the doctors, I am just another patient. So it's up to me to get the best care I think I need.

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Jen_b | @jenblalock | Sep 4, 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

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@hopeful33250 "Once I made an excel chart of changes in my echocardiogram from one year to the next and the cardiologist complimented me on it. "

NICE!

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tdrell | @tdrell | Sep 4, 2017

Jenblalock...tomorrow is your stomach test....good luck...we will await how it went. What is your decision as to going alone or?? Tdrell

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3 replies
Jen_b | @jenblalock | Sep 4, 2017
In reply to @tdrell "Jenblalock...tomorrow is your stomach test....good luck...we will await how it went. What is your decision as..." + (show)
@tdrell

Jenblalock...tomorrow is your stomach test....good luck...we will await how it went. What is your decision as to going alone or?? Tdrell

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Thank you! Hopefully I'll say it was easy peasy. My husband made the decision and he canceled his trip and is going with me. He said he wasn't comfortable otherwise. So, no need for me to brave and go it alone. 🙂

REPLY
tdrell | @tdrell | Sep 4, 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

Hopeful33250...what kind words you offer!!!! What is /was your career if I may ask?tdrell

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tdrell | @tdrell | Sep 4, 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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Pfists...I also will ask my GI Dr about them though he tends to be a minimalist. Tdrell

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tdrell | @tdrell | Sep 4, 2017
In reply to @tdrell "Jenblalock...tomorrow is your stomach test....good luck...we will await how it went. What is your decision as..." + (show)
@tdrell

Jenblalock...tomorrow is your stomach test....good luck...we will await how it went. What is your decision as to going alone or?? Tdrell

Jump to this post

Jenblalock...how sweet of your hubby...I had to have a hip MRI last Thursday....a 45 minute drive, and hubby announced he would drive (he had had a routine cardiac stress test 1 hour distance earlier in day) I initially said no reason to take me since he had had such a busy time...he insisted.

As I prepared to leave for the Trip/MRI, I found myself doing weird forgetful things. I am very claustrophobic in MRI's...and
My subconscious was reminding me!
It was good he was driving me , I realized....sometimes dependence is better ....safer and drains less energy.tdrell

REPLY
tdrell | @tdrell | Sep 4, 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

Jenablalock....am same way...very questioning and detailed oriented. Always have a list of questions for any Dr I am seeing.tdrell

REPLY
tdrell | @tdrell | Sep 4, 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

Jenblalock....Love it...excel spread sheet of echocardiograms! Sounds like you are with a good cardiologist...that he /she was comfy with your ingenuity! By the way...did it show any changes??? I get them every 2 years.tdrell

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