1. < MAC & Bronchiectasis

Oxygen and dryness

Posted by irenea8 @irenea8, Feb 3 8:31am

I just returned from 12 days in the hospital on Meropenem. They have me on Oxygen now. Hope it will be temporary but that remains to be seen. I need to keep the air that the home Oxygen Concentrator uses moist. Otherwise your nose dries and out and can bleed etc. You attach a device to it filled with distilled water. To play it safe, I thought I should put the distilled water through my LifeStraw pitcher first. I hope that will make the water safe because I do not think the dryness is a good idea.

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blm1007blm1007 | @blm1007blm1007 | Feb 5 5:31pm
In reply to @bayarea58 "@blm1007blm1007 @irenea8 I masked the entire 7 weeks I was in pulmonary rehab. Some other patients..." + (show)
@bayarea58

@blm1007blm1007 @irenea8 I masked the entire 7 weeks I was in pulmonary rehab. Some other patients did, some did not. All the rehab nurses did but I don’t think it was required. I mask indoors when in public, period. I started with the onset of Covid, long before I was diagnosed with BE/NTM, and never stopped. I have never had Covid (knock on wood) and have not had a single respiratory illness (other than recent BE/NTM diagnosis) since I started masking. I suspect that is why I am largely asymptomatic. I also work out at a gym regularly, again masked the entire time. No one is masked anywhere, but I have stayed healthy wearing my mask (KN-95 or N-95). My rehab nurses taught me about this great product that goes inside the mask to keep it off your face which I find really helpful when working out at the gym in my mask. Without it, when the intensity level goes high it can feel challenging to breath in the mask, but I am working pretty hard at this point, not sure that is an issue for everyone. Bottom line: masking has kept me incredibly healthy and because of this I could care less what anyone says about it or whether others are doing it. I mask, period.

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Wondering what the product is that you place inside your KN 95 or N95?

Yes I truly believe the mask wearing does help us greatly in avoiding another problem on top of our BE/MAC/NTM.
Agree with you: "care less about what anyone says about it, the mask, or whether others are doing it. "
Thank goodness I only had two bad days, in total, with a diagnosis of Covid.
Barbara

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irenea8 | @irenea8 | Apr 25 4:01pm
In reply to @irenea8 "The Pseudomonas is knocked back and infection symptoms are gone for now. My Pseudomonas was discovered..." + (show)
@irenea8

The Pseudomonas is knocked back and infection symptoms are gone for now. My Pseudomonas was discovered some years back but we do not know for sure how long I have had it. At least I have had it since around 2022? The infection from it and perhaps other bacterias had gotten very bad. It is chronic mucoid strain and they tell me I will always have it. I can only hope it stays knocked back for a long period of time. One must remain very vigilant with routines etc. I have great support at home! U of IA is Iowa. It is a teaching hospital.

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An update on this in case anyone is interested. I wrote this on Feb 4th, 2 days after being released from the hospital. By Feb 9th or so my infection had built back up to it's almost the usual amount and look. The Meropenem IV worked while on it and for about a week but the infection came back in only ONE WEEK! Now it is as bad as ever. Discouraging for sure.

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1 reply
scoop | @scoop | Apr 26 1:21pm
In reply to @irenea8 "An update on this in case anyone is interested. I wrote this on Feb 4th, 2..." + (show)
@irenea8

An update on this in case anyone is interested. I wrote this on Feb 4th, 2 days after being released from the hospital. By Feb 9th or so my infection had built back up to it's almost the usual amount and look. The Meropenem IV worked while on it and for about a week but the infection came back in only ONE WEEK! Now it is as bad as ever. Discouraging for sure.

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@irenea8 Have you looked into phage therapy? Easier said than done, I know, especially, when you are ill. Are you continuing to submit sputum samples? And ramping up extra vials of hypertonic saline each session? Wishing you better days.

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1 reply
irenea8 | @irenea8 | Apr 26 2:34pm
In reply to @scoop "@irenea8 Have you looked into phage therapy? Easier said than done, I know, especially, when you..." + (show)
@scoop

@irenea8 Have you looked into phage therapy? Easier said than done, I know, especially, when you are ill. Are you continuing to submit sputum samples? And ramping up extra vials of hypertonic saline each session? Wishing you better days.

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Thanks Scoop. Yes I actually did try Phage Therapy! Long story short it made me feel too sick. Not supposed to have side effects but it certainly can/does. It was not an easy process and took a long time dealing with them. The follow through on their part was very iffy and unsupervised and not as promised. Whereas the IV in the hospital had little side effects and worked quickly but just did not last. Regarding sputum, they did a test at the end of my hospital treatment in Feb with sensitivity testing. Normally my pulmo no longer orders sputum sample for me unless I request it. He says if you have Pseudomonas it tends to dominate and is territorial so to speak so other pathogens are less likely. It seems to be true since every sample in the past few years shows nothing but Pseudomonas. I do use extra saline in my morning clearance. Two vials.

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