Help for my sister

I’m glad to hear that you can still travel. I’m hoping that for her as well. I will be sharing this information with her as well as this site. Thank you all so much for your responses.

You can send her to this web address for instructions how to join Mayo Connect.
https://connect.mayoclinic.org/help-center/
Once she has signed up, she can look at the support groups. I would encourage her to join us:
https://connect.mayoclinic.org/group/mac-bronchiectasis/
If you want to get to us more easily open this link:
https://connect.mayoclinic.org/
Bookmark it in whichever browser you use, then click the bookmark to come to Connect without needing to search through Google.

If you want to come only to this discussion, you may bookmark it and come to it directly when you come to Connect - you may be prompted to login. And starting here doesn't not prevent you from participating in other discussions that interest you.

Again, I am so thankful you are trying to help your sister. Don't be surprised if she isn't immediately ready to take on another task of communicating with us! And keep in mind that while Bronchiectasis and airway clearance can "chew up" a lot of time and energy, she will remain healthier for longer if she does so. We each grow into a routine that works for us, and find ways to fit it into life instead of the other way around.

If she is afraid to travel, it may be that she has many horror stories about catching things - we are more susceptible, but there are safe ways to do it. And many friendly folks who will coach her on how. For example, I now prefer to travel in our own camper, eat at patio restaurants when reasonable, go to mainly outdoor concerts and games, and I strenuously avoid indoor pools. But I can be flexible, and when I travel by air or train I always wear a mask.

Thank you so much. I’ve shared some of the responses on here with her.
I’m so thankful for everyone’s responses because I understand it better now.

I was on the Big 3 for 14 months and had to quit due to side effects but I had been told I was clear of MAC before that and was just trying to complete the required 12 months after of antibiotic treatment. The MAC came back and I couldn't tolerate the new antibiotic therapy. So I nebulize with saline twice a day using an Aerobika attached to the nebulizer cup. That takes about 20 - 25 minutes. Then I use an oscillating vest which also takes another 20 minutes. This is in an effort to keep my airways clear and expel any mucus plugs so as to prevent infection down the line with other bacteria. I have two sets of Aerobikas and cups so that I only have to sterilize them once in the evening. I also have to soak them in soapy water, then drain and I use a Bololo baby bottle sterilizer to finish off. It was and is still difficult to adjust to the time requirements to manage this disease. Between that and the required daily exercise, I go 40 - 45 minutes on a treadmill, it sure takes a big chunk out of your day. I admit I find it difficult to incorporate everything into each day's routine depending on what's on my schedule but I do my best. Aside from all that, I have a special shower head and I have a SteriPen which is a UV device to sterilize water with 99.9% MAC clearance and a LifeStraw Pitcher for use at home. The SteriPen is small and can be put in my purse and taken to restaurants or on trips. I don't really travel a lot though because of all it would involve for me. It's nice that you are looking to understand more about what your sister is dealing with and I'm glad you've found our group. There is so much helpful advice and information here. I have found it invaluable.

This is a chronic condition. As my doctor says, "It likely won't be the thing that kills you." My view is that you should not be afraid to live your life. I'm 65, still working full-time and raising a family. So, occasionally, I might take a break for a day or two from my nebulizer and vest therapies when there's something fun or family or a work trip to do (or I just need a break from the daily grind). When I travel for vacation for a week or two at time, I do what I can with a portable nebulizer (though it blew up day 1 in Europe last year), take brisk walks or do workouts, and take Mucinex daily - small, manageable things. Missing regular therapy for a week or two for many won't make a big difference in the long run. I do like this group for good advice and ideas , but I personally don't want to get caught up in being obsessive about this disease and stressing about doing every little thing right. My personal view and, of course!

I was very depressed at the start but with more education about bronchiectisis and continuing talking to others I am able to to more than I ever thought. It with my own determination that it worked. I guess continuing to love her on her terms is the best way. We are all on different paths of this disease so there is no right way for all. Kudos to you for learning and asking.
All the best
Ann P

Christine, its the fear of getting sick. She feels the most comfortable and safe at home. That’s how I felt for two years- I would not travel anywhere because of „ what if”. This year together with my cousins from Europe I , scared to death, went on a two week trip visiting g us national parks. I had all my equipment, meds, antibiotics just in case,and more with me. I did it with a lot of understanding from my cousins and my husband. I discussed how it works for me before we set off. They wanted me to go with them and were very understanding throughout the whole trip. I would wake up every day more than an hour earlier than others, did AC, washed my stuff and set the sterilizer when they already would have breakfast. It was not easy I must say and two weeks were too long. But I would go for a week after that experience. So please show your sister my post. If you would like to email me, email my personal email for more info. I hope your sister will break the wall at some point. Wish you my best.

Thank you I am learning so much. Definitely seems like it’s can be time-consuming.

Thank you for your response. I’m glad that you’re still able to do enjoyable things despite the illness. While I’m learning a lot more about this, I’m hoping my sister can find a better balance so she can enjoy the fun things of life again.

Thank you, Anne..
I love my sister very much and you’re right, I need to accept that she needs to handle this on her terms. She does enjoy exercising and spending time with her daughter and does some shopping and such, so she is getting out there a bit. I just wish I could spend more time with her. We live in two different states so that makes it hard. I did visit her in May in NC this year and had a really nice time with her. Now I want her to come visit me up here in PA, but she says it’s too hard for her.