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What to do in life before the Big 3?
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.
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@letsjustbreathe sputum samples are typically what is run to check for infection or if the infection has cleared. Three positive results are usually the standard to confirm. Bronchoscopies are usually done only if indicated by symptoms and a CT scan findings if a sputum sample can’t be done or to look into other issues. If you do need one, they are relatively easy but not without some risk.
@letsjustbreathe if you are a patient at NJH, they should be advising you on all the potential risks/side effects with the medications. You can also look up the information for each drug via the internet. As others have said, everyone is different, and no one can predict what your journey will be like in terms of side effects. I am sure some have been pleasantly surprised that their drug journeys were relatively benign. I was a little surprised by the tough time I had with Arikayce. Again, each of us is different. The screening tests @sueinmn emphasized is because, as your doctors should have advised you, ethambutol has a risk of vision loss, azithromycin has a risk of hearing loss. These are relatively small risks but that is little consolation for those who experience them. These screening tests hopefully catches issues early, which hopefully helps reverse some or all of the damage. There are also EKG and blood work screening protocols. Those should be written out in the notes of your NJH doctor and if you are too far out from treatment that they haven’t included them yet in their notes, just ask your doctor for them. Certainly there are those who for various reasons decide not to treat. Some even with advanced disease. That is a decision only you and your doctors can make. But again, no one can predict your journey. Most of us who have made the decision to treat did so with much trepidation, knowing the risks, hoping for the best, but as you say, preparing for the worse. And for me, preparing for the worst meant staying vigilant with the screening protocols and my own “systems check” so when something seemed off, we caught it quickly and adjusted. If anyone has a better way of getting through this drug journey, I am all ears (or rather, eyes!) Good luck @letsjustbreathe! These choices are not easy as many of us know all too well.
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7 Reactions@letsjustbreathe Even long-term pseudomonas can respond to antibiotic therapy, but at low load like you show, docs may choose not to treat.
But what loads do your MAC cultures show? Not everyone needs treatment.
And what are you doing, aside from antibiotics, to fight off the mycobacteria?
@debw1017
Can you point me to the recent studies you mentioned? Rifampin seems to be main cause of my GI distress and would like to with my doctor possibility of dropping it.
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1 Reaction@letsjustbreathe I would try to keep an open mind about the antibiotics. I was also 61 when diagnosed with aspergillosis and MAC. Since I was having symptoms of fungal infection they treated me with an antifungal first, Voriconazole. I did watch and wait a few months then started the big 3 for MAC, azithromyacin, ethambutol and rafampin. I started following a high calorie diet prior to antibiotics since I knew that weight loss was an issue for most. As mentioned on this post I included a Greek yogurt daily and a probiotic. Due to rafampin’s interaction with one of my other meds I stopped that and started Arikayce, an inhaled antibiotic. GI side effects improved after about 3 weeks of taking the antibiotics. I still get some occasional nausea that resolves in a couple hours. I had my first negative MAC culture recently. So, hoping another 12 months of meds. If your side effects are more severe your doctor can make adjustments to find a plan that works for you. Best of luck with your journey. We are all here to help support!
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2 Reactions@ https://www.sciencedirect.com/science/article/pii/S1876034125000607
This is what I found. It also looks like there are clinical trials as well.
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1 Reaction@letsjustbreathe
Hi, I am scheduled to go to an NJH in August. Can you tell me what to expect? It seems like a lot of tests thanks so much.
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1 Reaction@sueinmn
MAC doesn't show up in my sputum cultures, so I don't know the load. The way we found it was doing a bronchoscopy.
No antibiotics yet. I'm nebulizing 7% saline and doing AC. That's all I'm doing to fight off the mycobacteria right now.
@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.
@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.