Newly diagnosed and can’t get a handle on my anxiety

Hi Lynda, it's taken me so long to get my thoughts together and reply that hopefully you're feeling much less anxious now. I was formally diagnosed with Bronchiectasis (BE) and MAC about a year ago, although MAC first appeared on a CT scan about 2 years prior to that. The pulmonologist, who was not a BE/MAC specialist, didn't know what it was. Once identified, he referred me to UNC which is a recognized care center for this disease.

I've learned a tremendous amount in that time, from groups like this as well as my own research. My hope is that my journey so far will bring you some comfort and hope.

What's changed in my life since my diagnosis:
1) Twice a day I nebulize 7% NaCl, use an Aerobika 3x in a row, and finish by using the Autogenic Drainage app for 4 1/2 minutes. Because I have acid reflux, I don't practice Postural Drainage. The times I've done it "accidentally," it seems to have really helped get mucus up and out, so it's something to consider.
2) I still garden and mow the lawn when my husband can't, but I wear a tight-fitting N95 mask. I did pick up MAI (Intracellulare) somewhere along the way, and as it's commonly found in soil....darn!
3) I'm more conscious of what I eat in terms of a clean diet and managing my acid reflux. I still drink coffee in the morning and eat some foods that I shouldn't from time to time because of reflux (tomatoes, garlic, etc.).
4) I've consulted with a Functional doc a couple of times to supplement my knowledge of lung health. I take a Boswellia supplement (anti-inflammatory), and a Daily Lung Formula from Gaia Herbs. No idea whether these are helping or not, but worth trying. I used to have a glass of wine - just one - every night, but he convinced me that I should reserve that for special occassions only, which I've done. Admittedly, some times Friday night is a special occasion!
5) I use a Life Straw pitcher for drinking water. We have not put filters on our tap water or shower head, but I plan to do so in the near future. I do clean the shower head atleast once a month.
6) Our hot water heater now sits at 135 degrees.
7) I've always exercised, but I'm more intent about doing it now, and I try to move as much as possible, with sufficient rest in between.
8) I submit monthly sputum samples to the UNC lab. In fact, using the word "sputum" multiple times in conversation is also new!

During my first visit with my UNC doc, she described my disease as "fairly mild." I was too uninformed at the time to clarify whether she meant the BE, MAC, or both. Regardless, she agreed that a "watch and wait" protocol was appropriate, which I am now doing.

My last 3 sputum samples showed no bacterial growth. I understand that this doesn't mean I'm MAC/MAI-free, but it's a trend in the right direction. I'd like to avoid antibiotics, but I would certainly try to take them if warranted in the future.

I belong to a very nice gym where I play pickleball indoors 4-5 times/week, do strength training, use the vibration plate and dry sauna, all with my doctor's agreement. I ride my bike outdoors, swim in an outdoor pool, and kayak in the Sound (high salinity so all good there). I wear an Oura ring and measure my sleep, daily activity level, and O2 saturation. At the start of my BE/MAC journey, my ring told me I was getting sick. I ignored it and kept pushing myself and ended up having my one and, so far, only exacerbation. That was not fun!

The point I'm trying to make in this long post, is that your life doesn't necessarily need to drastically change to ensure a positive outcome.

My most important learnings:
1) Daily airway clearance! Getting mucus out every day is critical. For me, nebulizing first helps thin it out, making it easier to expel, so the airway clearance is more effective.
2) Work with a Pulmonologist who specializes in BE/MAC, etc. Write out your questions ahead of time and ask the doc if s/he is ok with you recording the session. But of course, be your own best advocate.
3) Move every day, drink lots of good fluids, eat well...
4) Stay positive. I found a lot of scary information out there, and at times, it was hard not to go down the worse-case scenario rabbit hole. Support groups like this one, with its wonderful Mentors and Members are a godsend.

I sincerely hope that you and possibly others, find this helpful. I don't usually share so much about myself, but your post really got to me. Wishing you all the best. You're not alone in this! Carolyn

@chch1
Wow….what a wonderful message with such great info! Thank you so much Carolyn. I really appreciate you taking the time to share the details of your journey with BE/MAC and for sharing all the things you are doing to stay healthy. I am still adjusting to my diagnosis and the information you shared is very useful. I am working hard to incorporate many (if not all) of the things you mentioned in order to keep my lungs as healthy as possible. I still have a ways to go to feel “normal” but I’ll get there!
Also- I live in NC and will be visiting the BE clinic at UNC in a couple weeks. I’d love to chat with you if possible. I’ll send you a private message with contact info and hopefully we can connect.
Thank you so much for your help! I appreciate it so much. Lynda

@chch1 Thank you from a newbie to this platform. I’ve found a “Instagram” exercises to help drain your lymphatic system which seems to be helping me with staying active and draining my lymph nodes. I don’t need to go to a gym and its sporadic body movements without weights. I did not know that your lungs are major source for draining your lymph nodes, deep breathing.

Hi Lynda, it's taken me so long to get my thoughts together and reply that hopefully you're feeling much less anxious now. I was formally diagnosed with Bronchiectasis (BE) and MAC about a year ago, although MAC first appeared on a CT scan about 2 years prior to that. The pulmonologist, who was not a BE/MAC specialist, didn't know what it was. Once identified, he referred me to UNC which is a recognized care center for this disease.

I've learned a tremendous amount in that time, from groups like this as well as my own research. My hope is that my journey so far will bring you some comfort and hope.

What's changed in my life since my diagnosis:
1) Twice a day I nebulize 7% NaCl, use an Aerobika 3x in a row, and finish by using the Autogenic Drainage app for 4 1/2 minutes. Because I have acid reflux, I don't practice Postural Drainage. The times I've done it "accidentally," it seems to have really helped get mucus up and out, so it's something to consider.
2) I still garden and mow the lawn when my husband can't, but I wear a tight-fitting N95 mask. I did pick up MAI (Intracellulare) somewhere along the way, and as it's commonly found in soil....darn!
3) I'm more conscious of what I eat in terms of a clean diet and managing my acid reflux. I still drink coffee in the morning and eat some foods that I shouldn't from time to time because of reflux (tomatoes, garlic, etc.).
4) I've consulted with a Functional doc a couple of times to supplement my knowledge of lung health. I take a Boswellia supplement (anti-inflammatory), and a Daily Lung Formula from Gaia Herbs. No idea whether these are helping or not, but worth trying. I used to have a glass of wine - just one - every night, but he convinced me that I should reserve that for special occassions only, which I've done. Admittedly, some times Friday night is a special occasion!
5) I use a Life Straw pitcher for drinking water. We have not put filters on our tap water or shower head, but I plan to do so in the near future. I do clean the shower head atleast once a month.
6) Our hot water heater now sits at 135 degrees.
7) I've always exercised, but I'm more intent about doing it now, and I try to move as much as possible, with sufficient rest in between.
8) I submit monthly sputum samples to the UNC lab. In fact, using the word "sputum" multiple times in conversation is also new!

During my first visit with my UNC doc, she described my disease as "fairly mild." I was too uninformed at the time to clarify whether she meant the BE, MAC, or both. Regardless, she agreed that a "watch and wait" protocol was appropriate, which I am now doing.

My last 3 sputum samples showed no bacterial growth. I understand that this doesn't mean I'm MAC/MAI-free, but it's a trend in the right direction. I'd like to avoid antibiotics, but I would certainly try to take them if warranted in the future.

I belong to a very nice gym where I play pickleball indoors 4-5 times/week, do strength training, use the vibration plate and dry sauna, all with my doctor's agreement. I ride my bike outdoors, swim in an outdoor pool, and kayak in the Sound (high salinity so all good there). I wear an Oura ring and measure my sleep, daily activity level, and O2 saturation. At the start of my BE/MAC journey, my ring told me I was getting sick. I ignored it and kept pushing myself and ended up having my one and, so far, only exacerbation. That was not fun!

The point I'm trying to make in this long post, is that your life doesn't necessarily need to drastically change to ensure a positive outcome.

My most important learnings:
1) Daily airway clearance! Getting mucus out every day is critical. For me, nebulizing first helps thin it out, making it easier to expel, so the airway clearance is more effective.
2) Work with a Pulmonologist who specializes in BE/MAC, etc. Write out your questions ahead of time and ask the doc if s/he is ok with you recording the session. But of course, be your own best advocate.
3) Move every day, drink lots of good fluids, eat well...
4) Stay positive. I found a lot of scary information out there, and at times, it was hard not to go down the worse-case scenario rabbit hole. Support groups like this one, with its wonderful Mentors and Members are a godsend.

I sincerely hope that you and possibly others, find this helpful. I don't usually share so much about myself, but your post really got to me. Wishing you all the best. You're not alone in this! Carolyn

@jeannempm A company called Safe Water Products makes them and I think there are others. I have one from them on my sink faucet and one on my shower. They will filter out MAC as well as legionella. I replace the sink faucet filter about every two months and the shower about ever 6 months. You can tell they need replacing when the water starts to run slowly. I was so happy to find them because I can now relax when showering and also when using water in my kitchen for anything from cleaning to washing fruits and vegtables, cooking, etc. The peace of mind was well worth it for me. They post test certificates on their website. If you want to get them, they are also available on Amazon.

@chch1 Thank you for laying out your life with BE and MAC! I am overwhelmed as Lynda is, as I have been recently diagnosed and am just starting the Big 3. I was diagnosed with asthma about 2 years ago and turns out my issues are really more related to bronchiectasis.
I feel constrained with all these added responsibilities but hope the nebulizing and antibiotic regimen becomes easier to deal with. I guess my question is why do you limit alcohol? It will be hard for me to not want to enjoy a few drinks when in social settings.

@linda1334
I have a SafeWater filter for my kitchen sink but haven’t been able to place it on faucet. The adaptors included don’t fit. Also we have a pull down faucet head and I think I would have to replace and have a non pull down.
How did you install yours? Could you send a picture if possible?

@chch1 Thank you for laying out your life with BE and MAC! I am overwhelmed as Lynda is, as I have been recently diagnosed and am just starting the Big 3. I was diagnosed with asthma about 2 years ago and turns out my issues are really more related to bronchiectasis.
I feel constrained with all these added responsibilities but hope the nebulizing and antibiotic regimen becomes easier to deal with. I guess my question is why do you limit alcohol? It will be hard for me to not want to enjoy a few drinks when in social settings.