1. < MAC & Bronchiectasis
Profile picture for letsjustbreathe

What to do in life before the Big 3?

Posted by letsjustbreathe @letsjustbreathe, Jul 20 11:07am

Hindsight is 20/20, so I'm asking for your advice, perhaps from your hindsight. I don't really understand the impacts the Big 3 will have on my life, so please clue me in:

What impacts will the Big 3 have on my life, and what should I hurry up and do in life before starting the Big 3?

I'm 61, if that influences your answer.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Profile picture for Nonnie
Nonnie | @cpolich | Jul 23 8:28pm
In reply to @letsjustbreathe "@cpolich I know that I am allergic to aspergillus, and it was found during a bronchoscopy,..." + (show)
Profile picture for letsjustbreathe @letsjustbreathe

@cpolich
I know that I am allergic to aspergillus, and it was found during a bronchoscopy, but not in my sputum samples (same with MAC.) What were your "symptoms of fungal infection?" I'm wondering if aspergillus is creating my cavities.

Jump to this post

@letsjustbreathe I had a weird looking pneumonia in my left upper lung as well as multiple nodules throughout on my CT. I went to ER with a significant lung hemorrhage. My bronchoscopy showed Aspergillosis and MAC. The pneumonia and mass in my upper left lobe resolved after treatment with antifungal but the nodules and BE stayed. No cavities yet. So, they determined that was from the MAC. My MAC treatment has gone better than expected. It’s just a long commitment.

REPLY
Profile picture for Nonnie
Nonnie | @cpolich | Jul 23 8:45pm

It’s possible that the cavities are from aspergellus but I think it’s probably more likely from the MAC. I would ask your doctor.

REPLY
Profile picture for deanna14
deanna14 | @deanna14 | Jul 24 8:55am
In reply to @letsjustbreathe "@deanna14 You'll get a preliminary schedule in the mail beforehand. The schedule will likely change though,..." + (show)
Profile picture for letsjustbreathe @letsjustbreathe

@deanna14
You'll get a preliminary schedule in the mail beforehand. The schedule will likely change though, as they add/delete tests along the way. The first few days are exhausting, but you get a weekend off to relax. The last 2 days weren't full for me-- maybe they reserved that time in case I needed more tests. Regarding the tests, yikes, I had a lot of radiation!

The first 3 days I had a private room assigned to me, which was very helpful since I needed to lie down to produce a sputum sample. I also brought back Chick-Fil-A lunch (right across the street) and ate in my room.

The weirdest thing was that they needed you to stay hydrated for tests (and for lung health) but quite often I wasn't allowed to eat or drink anything because of tests. My nurse was exceptionally good at penning on my schedule exactly when I had to quit eating and drinking and when I could start up again. I also didn't have time to do airway clearance after the first 3 days, so I ended up coughing up a bunch of sputum at my tests. Thankfully, everywhere you go, they have an endless supply of tissues and trash cans, LOL.

All the tests aren't complete when you leave, so you don't necessarily have the full picture when you leave. I have to follow up with a couple of specialists at home now.

Not sure what else to tell you. Get a hotel that's relatively close-- mine was about 15 mins away with an easy drive. There's no need to stay right there at the (expensive) very close hotels.

Jump to this post

@letsjustbreathe thank you for sharing. The schedule they sent looks overwhelming!

REPLY
Profile picture for crystalena
crystalena | @crystalena | Jul 25 8:51am
In reply to @letsjustbreathe "@sueinmn Do you know why we start with antibiotics for pseudomonas first? It's been around a..." + (show)
Profile picture for letsjustbreathe @letsjustbreathe

@sueinmn
Do you know why we start with antibiotics for pseudomonas first? It's been around a long time (1st seen in 2024), so there's no eradicating it. The sputum loads for it have been (in order of samples):
1. 2+
2. <1+
3. "Rare" (at NJH)
4. "Rare" (at NJH)
I'm really scared of antibiotics because of the gut-to-brain connection. My parents have parkinsonism symptoms, and I sure don't want to get Parkinson's Disease because I've destroyed my gut microbiome with antibiotics.

".... to catch any side effects early."
What side effects? Am I going to lose my vision and/or hearing? All kinds of things come to mind-- retinal tears, glaucoma, etc etc. I am very near-sighted so I'm at risk for retinal problems to begin with.

"Above all, know that you can do this..."
Here's the thing-- I'm not sure that I can. That's why I'm trying to find out what life will be like for those 18+ months. Prepare for the worst and hope for the best.

Thanks for your help!

Jump to this post

@letsjustbreathe I read about the antibiotics. It is a worry to me . I have a history of C Diff. It is the 027 strain . It is a fast moving violent strain. I had hand surgery 10 days ago. I did stipulate no antibiotics . But ?? I am going to order the hospital records to see what meds they used on me at surgery . I am having symptoms now . It is always the start of the weekend it seems, when I need tests and prescriptions . I am trying to hold out until Monday . I have severe emphysema. These two things do not go together well . Blessed Be All of You. Crystalena

REPLY
Please sign in or register to post a reply.