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Wed, Aug 21 1:59pm · In shock after MAC diagnosis in MAC & Bronchiectasis

So glad the procedure as easy for you. There is so much to absorb with this diagnosis that fear of procedures shouldn’t be added to your worries.

Sat, Aug 17 3:28pm · In shock after MAC diagnosis in MAC & Bronchiectasis

The bronchoscope can be easy if you have a good anesthesiologist. I let them know how scared I was and they gave me enough medication that I didn’t remember any of it. Good luck!

Wed, May 22 1:29pm · Negative sputum results without treatment in MAC & Bronchiectasis

Hi Terri. The conference was excellent! I am so grateful my husband and I were able to attend. There was so much information given that it was difficult to take it all in. I am anxious for the presentations to be posted on YouTube for all of us to see. I encourage others to attend future conferences if possible.

One of the overriding thoughts that we picked up on was how much the experts don’t know. No solid consensus on treatment strategies, who to treat, when to treat, and the overall risks of treatment. But there are a couple of treatments on the horizon which show promise, including nitric oxide inhalation and phage therapy. Hopefully both will continue in development so we have better options for care.

One observation I made is that the experts in the room were the most humble and sincere health care professionals I have encountered. I spent my entire career in this arena and was extremely impressed by the sincerity and honesty in their communication and approach. They are working hard to provide the best care possible and to find better strategies to help us manage our diseases.

And I have to give kudos to this Mayo Connect online forum. The mentors as well as patients are so knowledgeable and willing to share. Nearly everything discussed at the conference has been addressed in various threads on this site. Thank you to all who provide input and guidance, especially to you Terri!

Sun, May 5 9:43am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Wish I could be there too. Looking forward to seeing you friends when I am back in July!

Thu, Apr 11 5:13pm · Anyone going to 2019 NTM Physician/Patient Conference in Texas? in MAC & Bronchiectasis

Hi Mary. My name is Debbi and I am planning to attend the conference. I look forward to meeting you and others who have MAC!

Thu, Mar 28 10:23am · Meeting Members in MAC & Bronchiectasis

@windwalker and @nannette, so happy to spend yesterday with these two beautiful ladies. Who knew great friendships would develop from this unwelcome disease? I am blessed to have new friends who truly understand this journey we have in common!

Fri, Mar 15 1:14pm · Meeting Members in MAC & Bronchiectasis

Aww, @america thank you. So sweet of you to say that.

Fri, Mar 15 1:11pm · Meeting Members in MAC & Bronchiectasis

@nannette, @windwalker and I are making a trip to Beaufort week after next. Maybe you can meet up with us!