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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Apr 14 3:02pm | Replies (9325)Comment receiving replies
Thank you to everyone for the advice earlier on my "fluttering" in my lower abdomen. It has pretty much stopped for the last part of the day, so hopefully it will stay that way. 🙂
We are a military family and we currently live in Montana, but we are moving to Illinois in June. We hope to be there for the rest of our lives because my husband will retire most likely in 2 years. (And, my pulmonary doctor is in St. Louis which is 25 minutes away.) Yay!!
We are leaving tomorrow to fly to St. Louis to go house hunting. WE ARE MOST LIKELY GOING TO BUILD A HOUSE, SO......
1) DOES ANYONE HAVE ANY RECOMMENDATIONS ON ITEMS THEY WOULD BUY TO INSTALL IN A NEW HOUSE THAT WOULD HELP PREVENT MAC/MAI AS MUCH AS POSSIBLE?....Like a special water treatment system, bath shower heads, etc. What have you all done to increase prevention at your houses?
2) WHEN YOU ALL FLY, DO YOU WEAR A SURGICAL MASK TO PREVENT YOURSELF FROM CATCHING GERMS? I really don't "want" to, but I am curious what most of you do.
Replies to "Thank you to everyone for the advice earlier on my "fluttering" in my lower abdomen. It..."
@ijustdontbreathewell, I also installed what I was told was the highest level air cleaning equipment on our furnace/CA because of all my coughing .. I also added room air cleaners .. I feel that has really helped my coughing. Coughing is IMPORTANT to get the sputum up so that it does not become a breeding ground for the mycobacterium .. BUT NOT 24/7 as it felt like it was becoming! I still practice my "lung hygiene" twice a day making sure I get up as much sputum as I can but not the continuous coughing I was doing! Good for you!
It terms of "If you fly wearing a mask you will need a doctor's note, that you are not contagious but are preventing breathing in germs from others potentially or they can refuse to let you board." That was interesting .. I have never had that issue .. BUT I usually don't put on my mask until I am in my seat .. just for convenience sake. Think I will get one just in case .. good idea! Thanks for your ideas! Katherine
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We installed an air cleaning system to filter out any extra dust or pollen, it really helped my Mom, as the air conditioning made her uncomfortable sometimes, she liked it warmer than before,but it did help clean the air. We also had all the air vents etc. thoroughly cleaned as well as fireplaces. We installed outside doors over all doors so that we could close the door to the house before opening the outside, sort of lots of foyers. We also had a self supporting energy system, I don't remember what they are called, so that if the electric went out it would not effect the air cleaning system or the oxygen she eventually needed, or the heating or air to make her uncomfortable. We also closed off the laundry rooms so that lint dust etc. did not enter the house. The doctor recommended these things. If you fly wearing a mask you will need a doctor's note, that you are not contagious but are preventing breathing in germs from others potentially or they can refuse to let you board. Not a good thing. Also we used all natural products for cleaning as a lot of commercial cleaning agents are toxic when breathed even in small amounts by someone with lung issues, they can cause coughing and inflammation etc... We already had water filtration just the type on the faucet that everyone has, but she always bathed never showered, so that might be a good idea, we have had patients with aspirated aspergillus which grows in showers. Hope you find a wonderful new home. And good luck and Happy Easter!