(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Hi all. I was wondering if anyone has bought a portable nebulizer that would be suitable for travel. Mine is very bulky and noisy. Thx fondly, Mary Jo

@cbest, welcome to Connect and to the MAC group. I moved your message to the main discussion forum so that you can be introduced to many members. People like you who have been surprised to be diagnosed with MAC, and frightened about what is to come. I encourage you to read through the past messages of this forum to get know the people who have willingly shared their journey to help people who are just starting out. You will get plenty of support here, and an incredible wealth of knowledge and experience to get you through this journey.

You'll read that many health care professionals are under-informed about MAC. So even with your 45 years experience as a respiratory therapist it doesn't come as a surprise for many here that this is your first encounter with the condition.

There are many members who will answer any questions you might have. Allow me to introduce you to a few. Please meet @tdrell, @chinasmom, @Paula_MAC2007, @jillnc and @kaystrand. Just to name a few.

Cbest, what concerns you the most at this moment? How can we give you assurance and help calm the nerves?

Great suggestion.

I am noticing older posts as in years, are there updates from patients who have had MAC and have been treated for over a year? I was diagnosed a year and a half ago and treated for approximately 8 months however, due to liver counts had to quit treatment. My MAC is now registering positive again and I have been referred to CDC for treatment. Is there anyone who has completed the treatment and not had to go back on the medication?

Mary Jo - I have a Drive Compressor Nebulizer Model PB42367R. It's somewhat compact. I found a case (not originally made for that) that it fits nicely in along with the nebulizer parts and I carry it separate (with a letter from my doctor) along with my carry on when I fly. It is noisy but I haven't figured out if there's a way around that yet. You can also find sterilizer bags on Amazon to sterilize your nebulizer parts in that is also helpful when traveling as they fold up. Linda

Welcome to the group cbest. You will find this group very supportive and loving. I joined the group last December, when I was diagnosed. I have bronchiectasis, atypical cystic fibrosis and MAC. I'm 65 yrs old. I started meds for MAC mid-December and am already finding that I can do things now that I had trouble doing a few months ago. I'm still restricted and get short of breath easily, but I'm noticeably improved. The best thing you can do for yourself is read through the many pages of posts from the start. It took me 3 days to get through it all, but I gained more information from this group than I could have ever hoped to get from any medical professionals. I have "filed" away links that are useful and started a Word document where I pasted posts that I wanted to refer back to and that I found helpful. It's not all going to be stuff you want to retain, but there is some very helpful information. It would be great to have a name so that we can address you by your name. Makes it more personal if you are willing. We will stick with you! You are not alone! Warmly, Linda

I introduced myself and problem a few weeks ago. I don't think I had reached the ocurrence yet that I am writing about today. I had a six month visit with my pulmanologist an he ordered a sputum test because I complained of coughing more. Sadly the results was pseudomonas with only tobramycin and furzas recommended. Half way through the tobramycin I thought it was going to kill me. Doctor went immediately to 10 day program with furzas. I have finished that and they are leaving the picu line in case of needed repeat. Help

Thank you. I will look into it. Someone else had suggested a Phillips Resperonic. It would be great if it could be a little quieter wouldn't it? Mary Jo

Hi @maryjo2sell I use an eFlow by Pari, it is very small and you cannot hear it at all, a fantastic machine. It also does not have any tubes for the MAC bugs to breed in, and is easy to wash. it has its own rechargable batteries or you can plug it in, I got it though a trial for Amakacin I think it could be expensive, but worth a look.

Dear All, Just brought my husband home from the hospital .. doing much better. I can't thank you all enough for jumping in to care for each other and newcomers .. it just shows what a great community we have .. I am proud to be a part of it. Hugs to all! Katherine