Balancing Safety and Social LIfe

Posted by monaj @monaj, Apr 19, 2023

Have your doctors given you guidelines regarding how to manage staying safe with NTM and also have some social life?
Prior to COVID, I was quite involved in various activities and social life.

A year ago, I became quite ill and after months of visits to various doctors, I was diagnosed with a recurrence of MAI and Bronchiectasis/Asthma flare. (I had reacted to breathing very cold Winter air while continuing daily outdoor walks.) I am currently taking the Big 3 and nebulizing Arikayce daily plus using an airway clearance vest and nebulizing Albuterol and 7% Saline 3x/daily.

I have been diligent about restricting/avoiding social activities, interactions and wear a mask everywhere. Mask mandates have been removed where I live and nearly all people no longer wear them. I have asked my doctors about what restrictions/precautions I should take. My PCP told me I must continue all; my pulmonology team tells me to follow CDC guidelines.

I continue to mask and am pretty isolated, but would like to travel, go to restaurants and gather with friends I have not seen for a long time.

Please share how your doctors advise balancing safety and social life.

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

I have the exact same questions and concerns about balancing safety and social life. I was diagnosed with bronchiectasis one month ago by Mayo. I have been masking up since beginning of Covid pandemic in March 2020 and continue masking to this day. I see everyone moving on from the masks and enjoying normal lives again. I feel so "stuck" and NOT living a normal life. I am very isolated as have been avoiding normal daily living and events etc. I am still living in a "bubble" and fearful of getting sick. I am more anxious because no one is wearing masks anymore. I am tired of wearing the mask and would like to be mask free too and enjoy life to the fullest.
Prior to the pandemic masks were not worn - so how did people with lung conditions manage their lung conditions?

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Thanks for your reply. I hope we get some information/advice from others that will be helpful and hopeful.

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I would continue to wear a mask, but I would start going out. I have multiple lung conditions to deal with; however, I cannot live in a bubble.

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In the end it is not up to others to protect us (sad but true). My solution is to wear an N95 or KN95 when I go out and avoid stores and crowds. My friends visit on the patio and we eat there with company also or go to other's outdoor space without masks. Our cleaning lady tests weekly before she comes to clean. I consider this my problem so I just try to deal with it as best I can without taking risks. I do telemedicine when I can otherwise I wait in the car for my appointment and then wear a mask. The dentist is of course an issue so I brave it! I don't think I live in a bubble but I don't feel free to do everything I used to do but others have limitations also - some people require 02 to go out others wheel chairs and so forth so I enjoy what I feel safe to do.

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I think it totally depends on where you are at in your progression of Bronchiectasis and if it is mild, medium or severe. Obviously more advanced Bronchiectasis and older age should take more precautions. On the other hand if you have a recent diagnosis and mild Bronchiectasis you can relax more but it is still best to avoid getting chest colds or COVID since any infection or virus will make your Bronchiectasis worse over time. So exercising at least some caution is just something you need to adjust to. Prior to COVD I would wear a mask if I went anywhere during flu season (like the grocery store etc). Now I wear a mask if I go anywhere at any time of year and I avoid going places as much as possible. But my Bronchiectasis is more advanced and I have chronic Pseudomonas. So it just depends on your situation and lifestyle. Staying in a bubble is for me the best choice at this point and I am grateful for time with my husband and two dogs.

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We all have to make our own choices as how we choose to live our lives. I am at a point that I look at my taking 3 meds for a infection I will never be cured of but is affecting my quality of life. My sight has taken a slight hit due to one of the big 3 while my hearing has taken a huge hit from one of the other big three. One side effect given for all three meds is severe dizziness. After my new lung specialist denied the meds were causing my dizziness I stopped taking all three for two weeks just to see if the dizziness improved. It definitely did and less than a week back on them I can barely walk due to the room spinning. As for masks my daughter was a 32 year RN and told us at the beginning of the pandemic the ‘only’ masks that will stop COVID are N95s. My breathing has gotten worse over time to where any kind of mask seriously hinders my breathing but especially an N95. I have decided not to wear a mask unless required where I am going. I go to the grocery store as soon as they open M-F - never on Sat or Sun when those who work are grocery shopping. I avoid crowds whenever possible. We belong to a very large church and I really miss attending in person but choose to watch via zoom now. Even taking these precautions my sputum cultures and CT scans show MAC to be twice as bad as one year ago.

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Thank you for all your responses. It seems we all have different levels of treatment tolerance and are trying to figure out what works for each. I am so sorry for those who do not tolerate the meds and hope solutions can be found that address needs. I hope each of us finds much improvement and learn better ways to manage all. My doctor has told me I can enjoy interaction outdoors with social distancing. I live in the Northwest and much of the year cold air exacerbates my symptoms, so outdoor activity is prohibited for me, but with warm temperatures on the way, I intend to take advantage of seeing friends outside during the Summer months.
I have learned a lot in this forum and look forward to future posts that are helpful to all of us as we navigate this journey we are on.
Best Regards .... and Blessings to all

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I had conversation with doc last week about this.
Btw, I’m pretty new at this journey-CT’s have been suggestive of NTM since last summer, but cultures done at Mayo in March surprised everyone since only Penicillium grew and it’s not thought to be cause of CT findings and cough. I have chronic sinusitis and mild asthma and CT now shows bronchiectasis.

When Mayo pulmonologist called with results last week, I asked about precautions and travel. She said we need to balance precautions with living. She gave the usual advise: use high quality mask if inside crowded places, especially airplanes and airports, try to socialize outside when possible, etc. She did say with better treatment and boosters, she thought it was safer to engage in public more. I asked about international travel and she advised getting a booster closer to trip in case it gets updated, but to get one at least 2 weeks ahead.

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