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6 days ago · Starting Arikayce - nervous in MAC & Bronchiectasis

Hi again Terry! Despite being a germophobe (we probably all are now), I picked up a virus and am waiting to hear from my dr about whether I should come in tomorrow. I apparently have NO resistance.

I'm so sorry that you have been dealing with these horrible bugs for so long. I'm glad you have found a protocol to keep it all under control. While discussing snorkeling, you said you have low lung function. Is that from fighting the bacteria, bronchiectasis or some other condition? I apologize if I am being too inquisitive. Rita

6 days ago · Starting Arikayce - nervous in MAC & Bronchiectasis

Hi Terri, Yes, I picked up the bacteria in the hospital. Last December, a sore throat turned into an exacerbation of my lung diseases and, when I couldn't get off the chair due to the inability to breathe, I called 911 and was in the hospital for 17 days. I've had a lot of serious medical problems requiring hospitalization over the years, but nothing like this! I reported my November 2018 MAC dx and their testing showed no other bacteria, just a rhinovirus. In May, a few pseudomonas appeared and in June the klebsiella, many pseudomonas and a fungus showed up. Very frustrating!

6 days ago · Water at freshwater lake in MAC & Bronchiectasis

Sounds wonderful. Jealous!

Mon, Oct 7 6:22am · Starting Arikayce - nervous in MAC & Bronchiectasis

Candy, it was the 5th treatment that set off my really bad shortness of breath and someone else posted that it was during the first week that she lost her voice. I think if you make it through the first week you should be fine throughout the treatment. Frankly, I'm jealous that you can do the treatment in the morning and go on about your day. I cough so much that I do the treatment around 5:30 p.m. so I will stop before bedtime. Rita

Mon, Oct 7 6:14am · Water at freshwater lake in MAC & Bronchiectasis

Good luck, gaylewrok! I posted on the topic Nervous Arikayce because this topic is on MAC in lakes.

Sun, Oct 6 2:40pm · Water at freshwater lake in MAC & Bronchiectasis

Thanks for asking, Sounder. I just posted an update on the original post "Arikayce – nervous to start". I hope that posting there will bring it up to the front.

Sun, Oct 6 2:36pm · Starting Arikayce - nervous in MAC & Bronchiectasis

Hi Sounder, i hope you find this. I'm glad you were finally able to start Arikayce and I hope it works for you. I wrote a very long update on this thread Sept 3.. My last appointment was on August 14 and my wonderful doctor told me that my June sputum sample (I was bringing them in monthly) showed NO MAC GROWTH! Yay!!!! I had not started Arikayce yet so Azithromycin and Ethambutol killed it. However, that same sample showed many Pseudomonas, kleibsella and a fungus. I am doing Arikayce to kill them.

My lungs do not like anything nebulized and I couldn't do 3% and Arikayce. I stopped the 3% and do Arikayce 3x a week. I cough during the treatment and for an hour or more after so I'm sure I'm coughing up some of the Arikayce. It was going so well that I tried adding a 4th day but I had terrible breathing for several days and had to skip everything. I was told to bring a sample in two months and my appointment is this week. I hope I have a good report!.

Mon, Sep 23 11:36am · Lung nodules and MAC in MAC & Bronchiectasis

I've had nodules off and on for a long time. One doctor told me they call any unusual lump, mass, etc. that shows up on a ct scan a nodule.

My first bronchoscopy was in 2011 shortly after I was diagnosed with chronic bronchitis and bronchiectasis. It was horrible. The scope was inserted through my nose and I think I may have been awake for the whole thing. The purpose was a "lavage" which is a saline wash to obtain mucus. I don't know why we needed this to obtain mucus because the main reason the diseases were found was because of excess mucus.

There was no bacteria in the lavage result or in the sample I brought in a year later.

Over the years, nodules which appeared in my lungs from time to time were followed with ct scans but my pulmonologist did not do regular sputum sampling. In November 2018, my new pulmonologist had me bring in a sputum sample and I tested positive for MAC. I began treatment in March. I brought in monthly sputum samples and the June sample showed a fungus along with other new bacteria. A nodule in the upper right lobe was suspicious for the fungus. (Btw I learned in August that no MAC had grown from the June sample).

Sorry for the length but we're finally at my second bronchoscopy which I had on July 1, 2019. This time, the scope went through my mouth ane I was given the same drugs as for a colonoscopy. I slept through the whole thing. I was intubated and the scope went through the intubation tube. Five biopsies and a lavage were done while I snoozed.

I think because you are having the bronchoscppy to look at your nodules, your dr is planning on doing biopsies and you will sleep through the procedure.

I hope you have good results.