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@gaylewroc

@windwalker Hi Terri! Good question...AKA Hot tub lung!! I haven't been in a hot tub since the 70's!! I live in Alabama, and I moved here from Florida and I know Florida is a hot spot. I have a familial history of Bronchiectasis...my mother and her twin sister both had it...and I believe they had a MAC infection also by the way they wasted away. Both died in their early 80"s and had Doc's that didn't know what they had. We all could have gotten in in Florida from a shower..we lived in the same town. I do garden here in Alabama. I wear a mask now, and try to remember to soak my shower head in vinegar. I had a flare a year ago when I joined a Rec/Rehab facility and spent about 45 minutes in a therapy pool. It was like heaven and I didn't want to get out.(it was like a hot tub).after that I flared pretty bad. I learned I can't even go near the lap pool!!! I have some other problems that make it hard. I also have Lupus which includes Fibro etc. and some heart valve issues..Fatigue is huge problem, and sometimes I don't know if Lupus is flaring or my infection. The Doc's don't know either.

I've basically been in bed since Christmas. I had my immediate family, 4 kids, 5 grand kids and spouses and fell into bed the minute they left. I was taking prednisone to get through the holiday. My Doctor's do not know how to treat this disease and I am over it!! That's when I checked into Mayo clinic because were not that far. After joining this group I found a recommendation for a Doc in Atlanta at Emory. That's only 2.5 hours away and my Daughter lives in Atlanta...so win-win.. Thankfully they are getting me in next month and I am really hoping for a better outcome. I will go wherever I need to go to get a life!!

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Replies to "@windwalker Hi Terri! Good question...AKA Hot tub lung!! I haven't been in a hot tub since..."

@gaylewroc, Gosh girl, you've got the 1,2,3 punch - Lupus, fibro, and MAC. I feel for you, I know that is rough. Having no energy SUCKS!! I am right there with you on that. I am on prednisone right now to see if I can pump myself up. I was doing pretty good for awhile there. The pines are sending out lots of pollen right now, so I am hoping it is allergies that have me so tired and short-winded. I have quit and packed up my two favorite hobbies (painting and jewelry design) Seeing my supplies and not having energy to do them just made me feel worse. We are completing/building a one story apartment to move into (a major downsize) because I am overwhelmed trying to take care of our house. It is two story, and I know I must do at least 50 trips up & down the stairs per day.I have to sit and rest with each trip to catch my breath. I can't tell if it is good exercise, or if it is killing me! LOL! All I know is, I am ready for an easier life.

@gaylewroc I have a strong feeling that my mother had mac also. She had Alpha-1, which is a life-threatening disease along with emphysema. She passed away at the age of 58 in 1991. Back then, the medical professions didn't know much about Alpha-1 or mac. So she was never properly treated. She coughed non-stop and was not put on any kind of long term antibiotics, or very many short-term ones either. I do believe our bronchiectasis is very inheritable. pretty sure I got my crappy lungs from her. Did your mom and her sister live out a natural life span? Did your mom constantly get lung infections with her bronchiectasis?