1. < MAC & Bronchiectasis

Water after 6pm?

Posted by sheila7a @sheila7a, 4 days ago

Hello.
I watched a patient of National Jewish Hospital give a short presentation about MAC.
She said no water after 6 pm
No reason why.
I have started my medicine and take the R&E about 9pm.
2R and 3E.
Just started last week.
Does anyone else take in evening?

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tconz | @tconz | 1 day ago
In reply to @rmoore901 "6 months of treatment for the Aspergillus, that must have been tough for you. Did you..." + (show)
@rmoore901

6 months of treatment for the Aspergillus, that must have been tough for you. Did you need to monitor with labs during the treatment or were you able to provide sputum samples? My last two labs didn’t show Aspergillus so will discontinue the antifungal however as it was discovered during my bronchoscopy I don’t know if it hasn’t spread to my blood or was never present there/resolved by the meds.

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The treatment for Aspergillus (Voriconazole) was tough and I had bloodwork done often for monitoring. All along my sputum samples never shower Aspergillus but the Bronchoscopy did. The doctors say a Bronchoscopy is 99% accurate and sputum samples don't always detect infection.

REPLY
1 reply
jill6063 | @jill6063 | 22 hours ago

I was just diagnosed with silent GERD at NJH a couple of weeks ago. Doctors said no food or drink for 2-3 hours before bedtime, "except for small sips of water." Same was said for before doing airway clearance (2 hours). Even before they confirmed I have GERD, they recommended the same for everyone with BE-NTM "because everyone refluxes sometimes."

REPLY
1 reply
rmoore901 | @rmoore901 | 20 hours ago
In reply to @tconz "The treatment for Aspergillus (Voriconazole) was tough and I had bloodwork done often for monitoring. All..." + (show)
@tconz

The treatment for Aspergillus (Voriconazole) was tough and I had bloodwork done often for monitoring. All along my sputum samples never shower Aspergillus but the Bronchoscopy did. The doctors say a Bronchoscopy is 99% accurate and sputum samples don't always detect infection.

Jump to this post

Thank you for sharing. Interesting about the samples vs bronchoscopy for identifying the Aspergillus. There are so many variables and so much to learn which makes this forum such a great resource.

REPLY
1 reply
cd33 | @cd33 | 20 hours ago
In reply to @jill6063 "I was just diagnosed with silent GERD at NJH a couple of weeks ago. Doctors said..." + (show)
@jill6063

I was just diagnosed with silent GERD at NJH a couple of weeks ago. Doctors said no food or drink for 2-3 hours before bedtime, "except for small sips of water." Same was said for before doing airway clearance (2 hours). Even before they confirmed I have GERD, they recommended the same for everyone with BE-NTM "because everyone refluxes sometimes."

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Hi what was the test to find out you had GERD?

REPLY
tconz | @tconz | 18 hours ago
In reply to @rmoore901 "Thank you for sharing. Interesting about the samples vs bronchoscopy for identifying the Aspergillus. There are..." + (show)
@rmoore901

Thank you for sharing. Interesting about the samples vs bronchoscopy for identifying the Aspergillus. There are so many variables and so much to learn which makes this forum such a great resource.

Jump to this post

I was totally shocked with both the Aspergillus and Abscessus results from the Bronchoscopy because neither showed up in the sputum samples only Bronchoscopy. There are so many people that don't get a Bronchoscopy and their infections go untreated because their sputum samples are negative. It is such a hard call because no one wants to get a Bronchoscopy very often.

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