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Tell us how you "Live Life Fully" with Bronchiectasis and MAC
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.
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Hi everyone, I have recently joined this group and would like to start by thanking you all for the information you share and amazing support. This is already helping me a lot ❤️. I was diagnosed with BE with MAC and Staph Aureus about two years ago, while I was living in Switzerland. Having survived cancer (NHL) 30 years ago, at first I was just relieved that the diagnoses was not cancer. The pneumologist and infectiologist decided we would treat the staph aureus and observe if MAC or staph were causing the symptoms. I also started nebulizing with saline and was taught the ACBT technique. At the time I was busy supporting my husband after a heart attack, my children had just entered university and I had a full time job. One year ago I retired and moved with my husband to Portugal and my new pneumologist is currently doing all the studies (samples, CTScan, etc.) to see if it is time to start MAC treatment. We started physioterapy which is very helpful and I am now consistently doing lung clearance 2x day. One thing that surprised me is that she told me that she does not recommend nebulizing simply due to the risk of contamination of the equipment. I always followed the instructions to wash and sterilize the cup and mouth piece of the nebulizer but per the instructions the connecting tube could not be washed or sterilized and this always worried me. So now I stopped nebulizing and actually don’t notice much difference. Instead I follow the advice to maintain well hydrated, exercise as much as I can and never skip lung clearance (even when I feel well). I am terrified about both starting treatment and not starting treatment and having disease progression. I am also terrified about not being able to escape MAC in the environment and am trying to learn as much as I can and see what I can realistically incorporate in my daily life to minimize the risk. I don’t want to live in a bubble and isolate from my loved ones so I am trying to stay positive. I started learning to play the piano just to keep my mind busy with something else and this is also helping a lot. Although I am still terrible at playing, I love the time I spend playing. and pushing myself to improve 🎶
Thank you again for the great support ❤️
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6 ReactionsI hope you don’t mind the fact that I am not living in the US. I did live in Cincinnati, Ohio for 10 years and both my children were born there. It was a very happy time.
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3 Reactions@paulastevens
The fact that you do not live in the US does not make a bit of difference and I am sorry that current differences and attitudes have made it so that would be questioned. You are welcome here on this forum.
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5 Reactions@cwal Thank you for the warm welcome
@narelled23
Thanks....I will try anything that might help this SOB.
@snoei
Hi! I use the 3M Aura Particulate N95 Respirator 9205 flat fold with no valve. I get them on Amazon. I like these because they have 2 straps - one to go over the top of my head and one to go behind my neck - which feels tight enough once I pinch the nose part and pull the other parts as tight on my face as I can.
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3 Reactions@sarahlynn1960 Thank you!