I had many appointments yesterday at Mayo Rochester. PFT, Bloodwork, Sputum, CTScan and originally an appointment with my pulmonary doc and end of day with surgeon. Since I have cavitary MAC in my upper right lobe only, I was a candidate for surgery. Also, I am having some issues with the meds.
My CT showed the cavity had gotten really thin walled and the doc said it almost looks like brochecstasis is what’s left. She said I will always have something there, sort of scar lung tissue, dead for any function of any kind. She confers w Aksimet. She said the other part of my lungs looked much better, and mucous free. I’ve had 3 negative cultures since August, so in 6 months I could be done w the meds. 1 Year treatment after clear culture is there protocol. She is discussing moving me to 3 days per week in March – August.
I am very happy about this news, I had such a small are of infection, it was always a bit strange. But to get the drugs to that area, you have to put them thru your whole body. Inhaled drugs would be ideal, or something more targeted. They could do it, with the will and the money
Promised Katherine I’d report on travel. My doc said she conferred with te MAC team, and they are agreed that at this time, travel would not be a problem. I had been told in Oct no travel w cavities due to cabin pressure. The big problem is cysts, we don’t have cysts. So, I’m traveling and probably dropping off for a few month to do so. If I’m fortunate enough to have this behind me, I plan to still work the site to encouage,and advise where I can, with my own personal experience.
The drugs work. They can be hell to take, they can be adjusted and changed to make it easier. We should use them where we can, is my thought, and all advocate for something a whole lot better than dinosaur Tuberculosis drugs to fight a modern day illness!
Thank you, thank you to all of the nice friends I made on here. You all got me through a month of dark days, I was so scared at first. This forum saved me along with a few folks I got close to along the way. My MAC buddies. Heck of a way to meet really nice people!!!
Later, I’ll be back!