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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Oct 29 5:15pm | Replies (9350)Comment receiving replies
@tfritschy Teresa and @lindaaz Linda and @afcardieri Fillis Hello and Welcome to our Connect Forum! We are so glad you found us! You will find our group a support on our shared journey with an exchange of our experiences and the information we have gathered. We are NOT doctors but if you read past pages of our post you will learn a LOT about MAC and Bronchiectasis .. unfortunately sometimes more than many doctors are aware of. As you educate yourself .. you MUST become your own best advocate! Remember .. if you will read a 300 page book for pleasure .. isn't it wise to read 25 or 50 pages of this Forum to help learn about our shared MAC disease? Hope you make the effort to read those pages .. it will pay off!
I am answering you on our main discussion page:
– MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/ ..( that is page 1 .. you can go to "Last" or wherever) . In this thread, you’ll find a wealth of information from an incredible group of knowledgeable and supportive members.
I am answering you there so you will perhaps get more responses. Come on over. Introduce yourselves and ask anything after you have read through the past pages and educated yourself to our shared disease. Hope you find these pages helpful! Hugs to all! Katherine
Replies to "@tfritschy Teresa and @lindaaz Linda and @afcardieri Fillis Hello and Welcome to our Connect Forum! We..."
I just read it so haven't even thought that far. Now that I do, I would make them from spring water NOT the refrigerator water. Another thought: I want to look into getting a shower head gizmo (don't know what to call it) for my bathtub in order to wash and rinse my hair. Anyone have a recommendation? I have been taking showers and might as well go "all in" (well there is no such thing in fighting MAC) and return to the old days of using a tub. When traveling, I will use showers-- don't trust the tub to be clean! No such thing as a dumb question if there were, I would be Queen of asking them. Terry
Wouldn't she though? (Katherine)
Guess there was a reason our forefathers in Europe only drank spirits, and
to this day do not use ice cubes, and ate and drank from sterling silver (silver
is natural antibacterial).
So, can we have a glass of wine or a small bloody mary once in awhile? I am hoping that my new refrigerator doesn't get the MAC infection too soon. Another question, how many of the nebulizer mouth pieces should I have? I have only one. Thank you - Barb
I have so many questions, try to ask them one or two at a time even if they sound dumb to me. But, I have to say, a lot of the questions that I had, they have been answered here. So much good info, so many helpful people.
By the way, I heard back from Mayo Clinic in Jacksonville -- they are booked up for at least a year with their pulm and ID physicians so they cannot take me.
Thank you -- Barb
Barb, The Rifampin, is hard on the liver and kidneys - probably all of them are. I had a glass of wine about 3 months after starting the drugs. Then had two more glasses of wine the following month on separate occasions. These glasses were small and 1/2 filled. My blood work showed that my liver values shot up last month from the alcohol, I believe. They recommend no alcohol while taking the drugs. I'm hoping that my blood work next time shows it back to normal. No more alcohol for me!
Will they let you book an appt a year out?
Yes, although some of us may have enjoyed a drink or two or three in the past, it is very counterproductive at this point because in addition to elevating liver enzymes while on the meds, it contributes to GERD, and we all know the effect of that!
Barb, I have an occasional adult beverage. Ask a doctor about the alcohol
and they all say no, hardly any of them condones it.You should
have extra neb mouthpieces. What if one breaks? I have one that is deteriorating
now, it is old and getting brittle. Plus, sometimes the piece inside the cup
ceases to work. It is good to have back-ups. Insurance covers it. I have four,
that way I am not having to clean them every day.
Connect
Terry - what about ice cubes, do you make them from spring water? I know that might be a dumb thing to ask, but I use a lot of ice cubes. Thanks - Barb