Life while being treated

FYI I had MAC in boy lungs did the year of very strong meds and never tested negative. I had a Double Lung Transplant last March and feel so much better as given a 2nd chance at life. I was told by 2 doctors a pulmonologist and internal medicine doctor I was not a candidate and now living my best life. Good luck

I just talked with my pulmonologist and he does not recommend nebulizing with hypertonic saline because he says it dries out the lungs and the practice has fallen out of favor. But he isn't against my trying it, just doesn't endorse it. I'll have a bronchoscopy in 2 or 3 weeks to see if the gunk in my lungs needs culturing to produce the bacteria or if they're detectable immediately. The latter, he says, indicates worsening infection. If that's the case, I guess I'll have to chose some treatment. Some people here seem to have begun treatment before they had symptoms; I've been told as long as I'm not coughing up blood, losing weight, having night sweats, feeling crappy, then I'm not sick enough to treat. So frustrating; this disease affects post-menopausal women primarily. Perhaps one day the medical establishment will take it more seriously.

FYI - I can only get one nebulizing session out of the Pari trek battery. Luckily we have a camp that has a solar powered charger. I have to charge it after every session.

That's why I switched to the DeVillbiss Traveler.

Out of the usual suggestion - if you or someone close is handy with basic electronics, you can test the cells in the power pack. If any are bad, replace them all (find right size/power online.) Way cheaper than a new pack. I can't tell you how many devices we have reconditioned that way.

Hi, I was being watched for 6 years before I started treatment. I had coughed up blood twice in that time early on. They still waited as I had no night sweats, wasn’t losing weight but did cough a bit, especially when reclined. My samples were always positive for MAC. My CT scans were the reason they started treatment as they could see it spreading. I was very reluctant to start treatment but at the same time I wondered if it would be better to treat immediately instead of waiting for the spread. Perhaps 🤔 we might not have so many relapses if caught earlier but in saying that, I’m not a doctor just my thoughts. I find it interesting your pulmonologist doesn’t believe in saline nebulising anymore!
Other people swear by it. Before starting meds 2 months ago I could easily bring sputum up for testing, now I never do. I’m not wanting bronchoscopies to get samples. At first I was on ethambutol with 2 others, the coughing stopped but we had to change it to Clofizamine and now I’m coughing more but without sputum. It’s frustrating to know what’s going on. Everyone talks about their pulmanologist, are these separate to the treatment you receive from the hospital or in your country do they treat you?

Does anyone else have annoying cough at night...hard to get my 8 hour z's in...have elevated bed and pillows. Nothing helps.
Don't cough at all during day.

Who approved you for the Double Lung Transplant if the pulmonologist and internal medicine doctor said "not a candidate". Very interesting. Just goes to show you, don't give up in getting answers and results.
Glad you are 'now living my best life". Wonderful, one year since the operation.
Let us know every so often how you are doing.
Barbara

"Everyone talks about their pulmanologist, are these separate to the treatment you receive from the hospital or in your country do they treat you?"

I'm not sure I understand your question. . .

Thank you. I started watching some u-tube videos after my RT advised I probably need a LT. I then asked my MD if there was a Transplant unit, I insisted on a referral. That doctor at Kaiser (different location) was the best. She took an hour going through all my old scans and showed me how I progressed throughout and was disappointed I did not have a biopsy or referred sooner. If I had waited any longer I would not be here as she gave me 1 year to live. I was up to 15 liters of o2, using a w/c and wrote out my last wishes and left all in order for my family. Our Lord is Great and right now that you can advocate for yourself ask to see a transplant specialist and let them tell you yes or no. All transplant patients have other issues we face, but nothing compares to what I have gained. I am very grateful and blessed to be involved in my donors family life as we connected and visit each other🙏🙏❤️❤️

Glad the RT spoke up and advised you, as well as what you did in research, and then your MD giving you the referral. As we must do, you did, speak up.
How nice to be involved with the donors family.
Barbara