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

@windwalker Hi Terri, Australia is beautiful! Thanks for the suggestion, I did look at the reviews and everyone says how great it is and that it’s improved their breathing and lung clearance. I’m just always a little skeptical about reviews sometimes. I also looked to see if I could order it on line but I can only find it on an Australian website that says ships to Australia only. I think I’ll buy it and give it a try.

@ginak, Very good. I did find out the brand that @megan123 (Jennifer) uses. It is by Pari and it is called the VIOS model. I own a small travel size pari that I love, but it is not as fast as hers. I still need to look into whether 'faster' may not be better for the inhalable antibiotics. @tdrell, Terri, is this something you have knowledge about?

Terri...no I am sorry...I have no info on this...terri

The respratory therapist at my clinic told mt the Vios Pari (not the small travel version) is the portable unit of choice for their team because it is reliable, fairly fast so people will finish the whole treatment, reasonably priced, parts & supplies are easily available. Downside is I find it noisy, but they last for YEARS. He also said speed of delivery isn't as critical as making sure you are inhaling deeply. He also said to shut off the neb and catch my breath completely if I get a coughing fit during a treatment, otherwise I'm just expelling the meds. First time I ever heard that, and my kids and I have nebbed for at least 30 years.

@windwalker I also have a portable nebulizer, it’s by Omron. Battery operated. It’s very light, small and quiet. But the Aerosure Medic is more like an Aerobika to use for lung clearance and to increase lung capacity. It was a bit expensive, ($229 Australian dollars), but I bought it anyway. I’ll try it when I get home in two weeks. I’ll keep you posted on how it works.
Gina

@ginak Sounds good! Gina, please tell me you held a koala bear.

I was diagnosed by a community pulmonologist in AZ a couple of months ago, but decided to get a second opinion at Mayo. There's been an interesting turn of events regarding my diagnosis because my AZ Mayo pulmo consulted with a pathologist colleague at Mayo Rochester who reviewed my culture slides and did not see any MAC, but did see fungi, so now they think the infection and cavity is due to fungal growth. Not sure why the fungi weren't seen the first time around by the AZ state pathologists. He believes there could have been MAC in the culture, but that it was secondary to the fungal infection and that there may have been culture contamination. If there was contamination, still don't understand why the Mayo pathologist isn't seeing MAC on the slides though. Anyway, still need to get more testing to find out if I have a gene that puts me on the 'mild' CF spectrum (also being sent to Rochester). Apparently, 3 to 4 percent of the population have a CF gene, but are asymptomatic or have very mild symptoms. All this to emphasize the importance of seeking second opinions from experts in the field.

Since a bronchoscopy on Tuesday, I have been told that the cultures are clear, but the fungi check which takes many weeks is for the MAC/MCI. However, bronchiectasis with chronic infection (MCI) was noted by 3 different physicians on an abdominal CT scan, an abdominal MRI and a HRCT lung scan, so I figure it is going to be there on the path report. Never knew I had a problem until a couple weeks ago when it was noted on a routine abdominal scan following my breast cancer. So, added another doctor (pulmonologist) to my list and looks like an ID doc in my future. My breast cancer was an ATM gene mutation, so who knows if the bronch was a gene-thing also?

@lnduh66, not sure what you mean by "fungi check for MAC'. MAC infections are caused by mycobacterium which are killed by antibiotics. Fungal infections are caused by fungi and are treated by anti-fungals.

If you had your bronchoscopy on Tuesday, it would take 6 weeks minimum to grow enough culture and speciate MAC bacteria (unless you're going through NJH). Not sure exactly how long the fungal cultures take, but certainly no more than 8 weeks.

@windwalker yes I did. And fed a kangaroo.