Help for my sister

Doing all that one needs to do for oneself with Bronchiectasis is time consuming.
For me it is best to nebulize every day to clear the lungs. As one person said to me "you wouldn't go without brushing your teeth as needed so why would you not do what helps loosen the mucus to clear the lungs to hopefully avoid an infection or a worse infection." Some people nebulize three times a day in order to clear the mucus.
This disease, as the NJH lead doctor said to me, is the disease that requires the most work.
Yes this disease can be a life sentence, certainly not a death sentence, of what to do, how to do it, and when to do it all.....meaning your time schedule centers somewhat and greatly around the nebulizing lung clearing methods which can be at least an hour for each session. Each person, to a certain degree, has to figure out what schedule and how it works best for them.
I also am trying to figure out how I can travel considering my best efforts with keeping up with the nebulizing that truly helps me get the mucus up and out....which is a must in order to stay well and function fully.
I am sure you will have others here on Mayo who will explain, also, how it is for them and what they found their way to doing for themselves.
It is a learning process. It takes time to grasp all and figure out what is best for ourselves with what helps in keeping the lungs clear to avoid worse problems.
I did not start the antibiotics and so far the infection is not getting worse and I feel fine. I have a low count of MAI.
Barbara

There's a lot to unpack to fully answer your questions and concerns about your sister. If she currently is fighting a lung infection, she would most likely not have the stamina to take a trip. At least that would be my experience. Many people with bronchiectasis routinely nebulize twice a day, and the nebulizer machine is rather large and heavy and loud. They do make small portable units that are great for traveling. And then there is the cleaning and sterilizing of your nebulizer cups that must be done daily. I do travel a bit, but there is much more to think about now. Things like hot/boiling water, what kind of shower head does the hotel bathroom have, being in close quarters with people indoors, etc. It can feel overwhelming and isolating to live with this diagnosis, but with time and determination it is possible to adjust and create a good "new normal". I think it is wonderful that you wish to support your sister and this site contains a wealth of information and ideas that could be helpful for both of you. You've come to the right place!

@christine02 @blm1007blm1007 and @pled have given you some great things to think about.
If your sister was treated with antibiotics and thought she was cured, but is now nebulizing, it is possible she either experienced what we call an exacerbation, or a sort of relapse, and her doctors told her she needed to take more precautions. Or it is possible she finally got an appointment to see an expert, who explained the importance of this process to her continued health. Or she may have joined one of the on-line support groups, and learned about airway clearance.

If you are hoping to vacation together, you must be pretty close, can you ask her about the change and what precipitated the change to daily clearance? Maybe even observe her process, so you can see exactly what it takes to try to stay healthy?

If your sister has not joined us on Connect, maybe you can show her what you have found and encourage her to do so. Then she can ask her own questions about how others manage to fit their schedules into living life daily.

Thank you for taking the time to understand how life-changing this diagnosis can be. After over 7 years, I have made peace with it and found a routine that works for me, but even today I am struggling with the fact that I was out in the pollen and wind too much yesterday, got a lot of exercise but shortened my airway clearance, and am going to need to do more today - while entertaining to school-age grandsons with very different personalities!

It's a hassle but it doesn't stop me from travelling. This is my routine when on the road:
1. After I arrive, I buy spring water to drink (some use a straw cup) and distilled water for sterilization of nebulizer.
2. I nebulize using my aerobika and 7% saline. Takes me 20-25 minutes.
3. I rinse each piece under warm water and soak in sudsy water for 5 minutes, swishing it around in the soapy water. I then rinse again.
4. I then put the pieces in a medela micro-steam bag and microwave for 3-5 minutes, depending on wattage. Take pieces from the bag, shake off water, and store for next use.

Net net, this takes about 30-40 minutes morning and night.
Note: To save time on busy days, I use the aerobika in the morning, and a different nebulizer at night without the aeorobika flutter assemble and just microwave all at once in a bag. I do do the sudsy soak immediately after each use.

PS: I also boil in distilled water 1/week. Easy if staying in an airbnb or home with a kitchen. I haven't stayed in a hotel since I started nebulizing.

Thank you so much for commenting. I really appreciate your information. Sure does sound like there’s a lot involved as that’s kind of what she says too. She is worried she might have to go on another round of antibiotics. I worry cause she’s so thin now. I read that this disease can go away, but can come back.
I believe she got diagnosed with this about three or four years ago, we live in different states and she won’t come back to visit us because of this I have visited her a few times. I worry that it is consuming her whole world and I don’t think she’s happy. Otherwise she’s doing OK. She did move to a new home and is exercising and meeting new friends so I guess maybe it’s not that bad. I was just hoping she might go on a little short trip with me to get a break from it all. Bless your hearts for having to deal with this illness.

I appreciate your response Barbara thank you so much. It really does sound so involved and now I’m beginning to understand a little bit better what she’s going through. I’m so glad I found this website to help me get those answers. I hope one day they can find a cure that knocks this infection out for good.

@christine02 I second @sueinmn Sue’s suggestion about inviting your sister to join this online group (there is also one through NTMir). Being in contact with others on this journey is invaluable. We share a lot of tips, tricks, support, and resources. I could not image being on this journey without my BE/NTM peeps!

Thank you Sue for responding. I’ve read a few posts so far and yes it sure does sound Life-changing.
I am definitely going to share with her this website. Since I’m new to the site, can you tell me is there a an app to download-that I can quickly get into? I’ve just been going on Google to sign in.

Thank you I am definitely going to share this information with my sister so she can get support for herself. Still trying to figure out how to send all this to her.