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?

@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

@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
@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

@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.

REPLY
@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 “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!

REPLY

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

REPLY
@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

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
@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

REPLY
@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

Pfists…I also will ask my GI Dr about them though he tends to be a minimalist. Tdrell

REPLY
@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
@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

Liked by Jen_b

REPLY
@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

REPLY
@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

Oh that wasn’t me. That was me quoting someone else and saying I loved it. I believe it was @hopeful33250 .

Liked by tdrell

REPLY
@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

@tdrell Ditto re: claustrophobic in MRI. Good thing he went with you. I think if I ever have another one I’ll be breaking out the Xanax.

Liked by tdrell, Carolyn

REPLY
@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 – Thanks for your feedback. It is just very frustrating at times. When I tried the CPAP I used it for about 5 weeks and sometimes felt worse in the morning than before I used it. I have just mild sleep apnea. I have been through pulmonary rehab which helped some and I exercise every day – but not enough aerobic I believe. Yes, all the doctors have their biases. Most local pulmonary doctors do not know much about bronchiectasis. I had the breathing tests done recently after two years and my lung capacity is about the same. At least it has not gotten worse. I do continually cough up a lot of mucous when I use the 7% solution. If I don’t use it I am coughing all day and people think I am contagious – so that is better. I sure have learned we have to be our own advocate. I remember is my 20’s my primary doctor doing the basic breathing test and I did terrible then. I wonder if I have never had full capacity in my lungs since birth. I have read that when first born those first yells of breathe are what starts the lungs working and if not strong then they may never be. My pulmonary doctor says that is possible – but I will never know. He believes I have had bronchiectasis for along time. I have been diagnosed with asthma about 25 years ago and have had many, many flare-ups over the years which have probably all slowly damaged my lungs.Thanks.

Liked by Jen_b, Carolyn

REPLY
@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

Hi Barbie, luckily my pulmonary doctor is also an NTM specialist so he is familiar with bronchiectasis. That’s too bad about your breathing capacity always being very low. I wonder why? Maybe from the asthma? Even when they said I had asthma (which they then said I didn’t have at National Jewish) my breathing capacity was up in the high 90’s so I guess I am lucky. I just always wheezed but I think that was probably from the undiagnosed bronchiectasis although I had had xrays that showed nothing until the cavitary lesion showed up beginning of last year during a pneumonia check. Then the fun began and I joined the group of damaged lungs folks (sarcasm here).

REPLY
@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

Hello All, your comments & experiences continue to help me try to find my way along this path!

After going to a local pulmonologist & ID dr’s, I went to Mayo (Rochester) where I was put on the “Big Three”, supposedly for 14 months. I did fine with Zithromax and Rifampin, but reacted dramatically to Ethambutol. (Intermittent stabbing pains in skull, wavy & unfocused vision) on my 2nd dose. My new local ID Dr. at the University of KY sent me to an opthalmologist, who told me about one of his patients (whom he thought was overdosed) going permanent blind.

The ID doc at the university has subsequently taken me off ALL MAC meds for the next 2 months until I see her again. She says that many folks find the treatment to be more damaging than the disease. (BTW, I’ve been told I have mild bronchiecstasis.)

Pretty much have decided I will decline taking Ethambutol unless someone can convince me it’s truly necessary!
SO confusing bouncing from doctor to doctor this summer, all of whom have differing opinions.

I am an active 59 year old who exercises regularly. I don’t cough very much (& cannot produce much mucous), have mild fatigue & Mayo doc says my immune system is good. Bronchoscopy showed MAC in lower right lung (confirmed by lab at Jewish National) & various nodules in both lungs. Only other fungus that tested positive is histoplasmosis, which is very common in the Southeast.

It is so hard whether to treat or simply monitor this!! Any tips appreciated.

REPLY
Please login or register to post a reply.