Tell us how you "Live Life Fully" with Bronchiectasis and MAC

Posted by Sue, Volunteer Mentor @sueinmn, Apr 20 9:38am

Trying to start a positive, upbeat discussion, please.

When first diagnosed with Bronchiectasis, many of us have never heard of it. We get little info from the doctor, and turn to the internet for information. Bronchiectasis, with or without accompanying infections, creates many challenges in managing the disease and its symptoms. Sometimes the diagnosis comes after a long journey through the health care system. And sometimes it comes on top of other chronic health issues or diseases. It can be downright scary.

Years ago my PCP, pulmonologist, and ID Doc each told me "This is a disease you will always live with, but are unlikely to die from, take reasonable precautions and go out and live your life. " Recently Dr Jennifer Honda said the roughly same thing in her Webinar:

Many new members come to Connect asking, essentially, how can I live with this disease?

You can help! I invite those who have managed to stay active with family, job, hobbies, exercise, volunteer work, travel, etc to tell us how you overcame the initial shock and are managing an active life day-to-day while handling airway clearance and health precautions. Y'all hear enough from me - I'll share my story after you share yours.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

frankie160 | @frankie160 | 4 days ago

Hi Sue,
The question you are asking of us hit the spot with me as it will allow me to come to terms with my condition and move forward and truly enjoy my retirement. The challenges I have faced have been complicated, and the BE/NTM, COPD/severe Emphysema diagnosis in 2022 followed by Stage 1A IDC Breast Cancer caused enormous stress just as I was retiring after 50 years of employment. At The Weil Cornell Pulmonary Practice I have received decent care with vert smart Pulmonologist and NP and ID Doc, who were able to come up to speed quickly with my situation. However I've had many challenges along the way such as delayed GE diagnosis that really was the root causing 80% of chronic coughing . So for someone who has been around for a few years or more with BE/NTM and all around breathing issues, I've decided to see myself as "stabilized" doing the best that I can with the treatments and information that we have available to us at this time. The key for me has been finding this group in late 2022 plus decent pulmonary care and CONSISTANT AWC. So far I have been able to remain active but have had to leave the world of competitive tennis for fun ladies doubles. Onward and Forward!
Flo