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Sue

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Minneapolis, Minnesota and McAllen, Texas

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Posts (190)

23 hours ago · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@toni1132 We have planted low-growing native groundcover in our yard and next door, and it is irrigated because it is under citrus trees, so there is little dust. The other side it a septic leach field covered with gravel and then native plants, again little dust. Our windows our usually closed and we run a house fan and air purifier. Since we started this, minimal dust inside. On windy days I try to stay in or wear a N95 mask (my brother and I look like twins on those days – he lives across the street and also has lung issues.) A friend handles my bird feeders for me or I mask and glove. I switched from open water for the birds to a chicken-waterer to keep out their droppings and feathers – then I wash hands after I clean i & sanitize it.
Birds in the house have been on our no-go list for years – we had parakeets with psittacosis many years ago and the MD from the state health department told us about the risks because we had ashtmatic kids and an immuno-compromised older adult in the house. Of course we used to make an exception when my daughter's rescue parrot needed care, but even that is past. If you decide to keep your feathered friends, do you have someone else to do cage cleaning? If you must, my ID doc says gloves and N95 mask, then toss the gloves.

1 day ago · Question regarding lung surgery in MAC & Bronchiectasis

@nnassiri Hello Nass – I am glad to hear that your wife is seeing improvement and tolerating the medications. The usual duration of treatment for the Big 3 antibiotics is somewhere between one and two years, but it is highly variable. I do not know if there is clinical evidence that 3-4 years of continuous treatment is effective, and I would be worried about the long-term effects on the body of so much medication and development of drug resistance. Has her team submitted the sputum culture to drug sensitivity testing to be sure the strain of NTM is susceptible to the drugs being used? One of our members, Terri @windwalker has used Tobramycin and another drug in alternate months to keep her infection under control – maybe she can tell you something about how that is working for her.
Sue

1 day ago · I.D. Photo in MAC & Bronchiectasis

Make sure you have a photo on your PC or tablet that you want to share with us and that you know its location. I put mine in a folder called "Photos" on my Windows10 Desktop.
Hint: Head Shots, well-zoomed in, are best because the image we see is so small.
At the top of each page, below the Mayo Clinic Connect banner is a circle (next to the envelop icon) with a drop-down arrow.
Click the arrow and select "My Profile"
On the Profile page, Click "Edit". There is a circle to the left of your bio, in Edit Mode it should either say "Change Photo" or "Add Photo" – click on it, and a list of your PC folders will appear. Select the location where you placed the photo. Select your photo. Click "Save Profile"
Ta-da – we will all be able to see your smiling face.
Sue

1 day ago · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@toni1132 Hi Tonni, Welcom to our group – as you already can see, there is a lot of information here, and a lot of links to other resources. I hope you find some answers that help you deal with your situation. Most of us here are trying to figure out how best to live with our diagnosis and still manage to have a life beyond it – we take varying levels of precautions depending on our level of illness and our circumstances.
I don't know about copper actually killing bacteria – at least mycobacteria (NTM). I believe studies show is that copper does not support the development of biofilm, where the NTM tend to colonize, the way plastic pipe does, but not it actually kills the NTM. That said, your cleaning and drying precautions, together with the copper itself, should help keep down the NTM growth to reduce your exposure.
Since NTM is EVERYWHERE, you cannot completely avoid it, simply minimize your exposure with reasonable precautions. For me that means no hot tubs, no long steamy showers, no digging in the dirt in my Texas yard that I share with chickens and wild birds (and avoiding the dust from it by keeping it covered with native plants) – all sources of aerosolized bacteria, which is the big risk. But I still travel, eat out, socialize (but not with sick people)…
Do you know the composition of the rest of the plumbing at your residence, whether it is copper, plastic or iron? Have you set your water heater to at least 140F to help prevent NTM from colonizing there?
Sue

1 day ago · 7% Saline Solution in MAC & Bronchiectasis

@kathyhg and @suenfl My Pulmonologist went beyond getting defensive when I asked to consult an Infectious Disease specialist when my MAC treatment wasn't working – HE fired ME! Possibly one of the best things that has happened to me with this stupid disease – I now have a much better Pulmo who actually listens to me, backed off my meds, and prescribed 7% saline (original guy also said No to this.) If you don't feel comfortable with any physician, it's time to find a different one, and one well-versed in your condition.
Come back to the group with your location, you're almost sure to get a recommendation…Sue

2 days ago · Great Information about physical activity to fight fatigue in MAC & Bronchiectasis

@thumperguy – Everybody has to go at their own pace. I am just giddy right now that the fog that was with me for years while I had a really bad case of (undiagnosed) MAC and then endured the Big 3 for 18 months has started to lift a little. I can now manage to do something every day, and sometimes, like yesterday, I can have a great day. I can already tell you that today will be MUCH slower, probably with a nap thrown in. Do you think I might have overdone?
I am also blessed to spend my winter in a community of compatible and empathetic seniors. We accept each person's abilities and limitations, accommodate them by modifying activities where possible, and planning alternatives that more can do. We also encourage one another through health challenges and other life events. Most days the weather allows us to be outdoors, at least to walk, without struggling with cold and my nemesis, ice. When we return here each fall/winter from out northern homes, it is like a joyful family reunion. My life would be very different, and a lot less rich, if I didn't have this community to support me, and my tiny home (400 sq ft) to live in.
Sue

2 days ago · Great Information about physical activity to fight fatigue in MAC & Bronchiectasis

Love the analogy!
Today's tally for me 4.75 miles and 75 min of sustained activity, including a walk and line dancing. Plus 10 minutes of stretching. I find at least 30 minutes more of restful sleep when really active over an hour compared to my lazier days. Trying to get to an average of 5 1/2 hours of good sleep out of my nightly 8 hours in bed, but my eyes often pop open at 6 or 6:30 am, and it's useless to lay there.
I use a Fitbit sent to sensitive to measure my sleep. On Mondays afterman active week (4 or more days over 30 minutes) my oxygen sats measure at least 2-3% better than lazy weeks.
Now I'm looking for a more flexible device because it only registers intervals of 10 min or longer. On bad days, I may only be able to mange 5-7 minutes moving before I need to pause, and if the pause is more than a minute the counter starts over.
What method do you all use to track activity or sleep?

2 days ago · Great Information about physical activity to fight fatigue in MAC & Bronchiectasis

Hello everyone, fatigue associated with MAC is a frequent complaint in many of our discussions. Today as I was browsing through the Daily Digest from Mayo Connect, I happened on this article. https://connect.mayoclinic.org/page/cancer-education-center/newsfeed-post/physical-activity-as-medicine/?utm_campaign=hub_email&utm_source=email&utm_medium=digest_view_more_link
Although the focus was on cancer survivors, I cannot help but to believe that it could help some of us as well. So, now I'm off to do my morning walk. And next time I go out to shop, I plan to find some resistance bands. Mine have been neglected so long that they are not good anymore.
Sue