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Posts (61)

Jan 8, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Katherine, please excuse me for using this address – I know there is another which I can’t find right now. Could I be taken out of the forum l until a later date? I can’t keep up. I am focusing on getting a French Academic Team ready for a competition in March. I have to watch my diet and energy level closely – I recoup on weekends. I know I will be back in contact as my lungs continue to keep me at less than 80% of my energy level but the alternative seems harder to face if I want to keep working. So I want you to know and all the other contributors to this forum how much their experiences have helped me but now I am unable to keep up with the Thank you all for your understanding. I will be back! Kathryn

Dec 30, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

I, too, have a cavitary nodule in my right upper lobe but it has decreased in size. So I keep waiting. I don’t know if I have MAC but continue with cscans every three months. Your testimony is encouraging. The bronchiecticus (the spelling defies me!) is something I can live with, but I am concerned about being able to work while taking meds if I do have a bronchoscopy and am diagnosed with MAC. I just celebrated half a year of working with a holiday party for over thirty people. Your story and others’ experiences have truly helped me from panicking. When and if I do begin taking medication I certainly will be back for advice!

Happy New Year 2017 to us all! Kathryn

Dec 20, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

All you are doing is wondering, Katherine and others – but I need to get off this forum temporarily as I find it hard to find other e-mails I need to read. So, could you do that for me? And, I know I will be checking back in this summer. Very best, thank you for being my anchor through hard times. Kathryn

Dec 12, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

You are right about the scans – I get a CD and written report every time I have one done – about every three months now. What really surprised me was the I was admitted to the hospital for a biopsy of a nodule in my upper right lobe and the radiologist who was to do the biopsy hadn’t even seen my scan before I was admitted. So the information had not been exchanged between doctor and hospital before I was admitted, prepared, and hooked up ready to go in for the biopsy. The radiologist took another scan, as I’ve written before, and sent me home as the nodule had shrunk and the chance of a collapsed lung was too great.

Good news. I do know now that my A/C dusty-filled duct system was contributing a lot to my cough and weakness. Since I have had that changed out, I feel much better. Still have to keep up with the pulmonologist but I do feel better. I can not tolerate dust.

While I’m here, just a word of advice – not to just concentrate on the lungs. I let my other doctors take second place and nearly missed two pre-cancerous (Basal Cell Carcinoma) skin lesions on my face. I’ve had these cancers twice before on my nose requiring full radiation treatment (33 times each) and felt lucky I caught these in time.

Well, lets enjoy the holiday lights and hoping everyone has joy to hold on to. Kathryn

Dec 5, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

I’m at the same stage as you are Janet. I have felt better since I had my A/C unit with ducts replaced and I stay away from dust and chemicals which cause me to go into coughing fits. May have to get a cleaning lady! It’s worth it. My pulmonologist is waiting until a cscan shows that he will be definitely able to get a sample of my bacteria. I have nodes in my upper right lode that are hard to reach apparently and I can not give a sputum sample. So, I am feeling someone stronger and the season – whatever religion you are – brings joy to my soul as I hope it does for you. Wishing you the best. Kathryn

Nov 29, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Thank you for all your kind thoughts. I do have days of coughing up sputum which I do by lying down for about 1/2 hour and just cough, cough, cough. I tell visitors I am taking a nap. But a day I don’t have to do that is a good day – more energy. It’s up and down.

You are so kind. Thank you.

Nov 28, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Thank you so much for caring enough to forward me this valuable information. Kathryn