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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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | 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

You mention "silently aspirating" in your last post. Does this mean that you don't cough when you aspirate?

Teresa

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

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Hopeful33250....thanks for positive feedback.am wondering if our scepticism etc is cause if I recall all 3 of us have healthcare backgrounds.tdrelll

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.

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Hopeful33250....I understand silent aspiration to mean fluids from stomach ...without me being aware....come up from stomach and or esophagus and enter into my lungs. I am unaware when this occurs....I am be leaning over....or lying on right side in bed. Tdrell

REPLY
tdrell | @tdrell | 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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Auntnanny...you are an inspiration!!! Thanks for sharing your history and current status!!! Tdrell

REPLY
barbie46 | @barbie46 | 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

jen aunt nanny - tdrell -- So much being talked about MAC, Bronchiectasis and GERD - Hearing one thing from Mayo and something else from NJH - it all gets very confusing to me - who and what do you believe?? I have been treated for asthma for almost 25 years and was treated for GERD early on because I could not get asthma under control Then a few years ago I got MAC and was taking the Big 3 for a year. After the Big 3 I still seemed to be still coughing up a Iot of mucous and thought I still had MAC but had sputum culture done and later bronchoscopy and did not have MAC then had breathing tests and was told I had bronchiectasis and probably had had it for a long time. My lungs are at about 45% of capacity. I chose to stop taking the GERD med as it can affect your liver. My primary doctor said it was okay. I told my pulmonary doctor I stopped and he just said if I start coughing more I should go back on the GERD med. So far I have not had my coughing get worse. The thing that has helped me the most is the 7% saline solution in my nebulizer along with the albuterol. I have been on Advair 50/500 for many years starting with the asthma. Recently I have tried samples of spiriva - and a few others along with Advair and it did not make my cough any better. The 7% saline solution has helped the most to get the crude up and out so I do not cough all day. I have used the CPAP for awhile too and it did not help either so stopped that too. I am tired most of the time and get winded easily. I did not do well on the 6 minute walk and most oxygen level was getting below 88. I am not on oxygen at night, when I exercise and when I need it. I am 71 years old and have no desire to go through all the tests you folks have had at Mayo and NJH. If I were younger and still raising young children it might be different. One pulmonary doctor I had many years ago thought I had COPD and never really had asthma. I don't know what to believe any more. I never smoked but inhaled a lot of second hand smoke when I was younger and working. I have learned a lot from the Mayo thread and Inspire and I thank you all for sharing. At first I thought I was alone with the MAC (had really bad night sweats with it) and the Bronchiectasis. It is nice to have a support system. People look at me and think I am fine, especially since I don't cough all day --- just after I use my nebulizer. Thanks for listening (reading)!

REPLY
barbie46 | @barbie46 | 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

Yes, I am hearing lately (I think on Inspire) that they are not treating with the Big 3 as much because it can come back easily. I was told because my immune system was so weak - that could have been why I got the MAC. Most people do have MAC in their lungs but if you have a weak immune system, it is easier for it to flare up. And once it is in your body (from air, soil or water) you will always have it but may not always be actively affecting you.

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | 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

@tdrell

If three of you have healthcare backgrounds, I'm supposing that you are all analytical as well as intuitive when it comes to your health. You have experienced a lot through your careers and you have probably developed a sense of when something just doesn't seem quite right.

I believe that "intuitive" might be a better word than "scepticism." In addition, to your own proactive approach to your health you are all very supportive people - great combination - you must have been great in your careers!

Teresa

REPLY
Jen_b | @jenblalock | 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.

Jump to this post

@auntnanny Wowza! That is a busy life! I am 62 and it's great to see so many active, vibrant women in their 70's and 80's. I was on meds for 15 months and although they didn't make me sick, besides stomach cramps, they did make me extremely fatigued. I am off them now and feeling much better. Now to hopefully figure out the cause of the lung issues and maybe be able to do something about it.

REPLY
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

Jump to this post

@tdrell Although I worked at the Medical University my background is in information technology so no healthcare here. I'm just skeptical by nature. My sis-in-law calls me the fact finder because I question everything. I guess it can be an irritating trait to others. 🙂

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | 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

Jen @jenblalock

I also question and research as well. It is probably part of the analytical nature of your work and just the way your mind works! I especially like doctors who are not repelled by my questioning nature. Once I made an excel chart of changes in my echocardiogram from one year to the next and the cardiologist complimented me on it. (He is one of my favorite doctors).

Teresa

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