Questions on COVID and Bronchiectasis

Posted by Beth Kiefer @mrf5629, Aug 29 2:17am

I received a CT confirmed diagnosis of Bronchiectasis two days before Mayo shut down for COVID in March. Although I had the results, my appointment with the consultant and additional follow up tests were canceled. They sent me an Aerobika in the mail. (Nobody told me I needed to sterilize it or my nebulizer, so that’s a new worry.) Months went by while I laid low in my house afraid I would certainly contract COVID the minute it sensed my lungs in the vicinity. My anxiety level has been over the moon and I became a recluse, crying at every turn and feeling lonely and terrified. In June, I finally worked up the courage to reschedule my follow up tests and pulmonologist appointment. Interestingly, Mayo requires a COVID test before pulm function tests and when they tested me, I was positive for COVID! Completely asymptotic. But I worry about getting it again. I was so careful and still got it. Are others out there feeling this way and how are you coping? I am falling ill enough about every 5 weeks to have to do a ZPak and now my doctor wants sputum cultures, which brings me back to my unsterile cleaning technique worries. We’ll see I guess. He also suggested sending me to Mayo’s Mayo’s Bronchiectasis Clinic. Any thoughts on that? I’m being seen by a resident whose being followed by a Staff pulmonologist, but I kind of think I should ask for an expert in the Bronchiectasis clinic. I seem to be trending worse. I also had the genetic testing completed and phone conferred with the resident because I am an Alpha antitrypsin MZ carrier and that is what they are attributing my disease to. So new to this with so many questions!

Hi @mrf5629, and welcome to Mayo Clinic Connect. You've got questions and this group has members who are ready to talk. While we wait for others like @sueinmn @windwalker @poodledoc @kathyhg @irene5 @alleycatkate to join in, you might be interested in some of the discussions in the COVID-19 group (https://connect.mayoclinic.org/group/covid-19/), in particular these 2 discussions:

– COVID-19 and MAC: What are you doing differently to protect yourself? https://connect.mayoclinic.org/discussion/covid-19/
– Tips: Traveling to Mayo to get medical care safely during COVID-19 https://connect.mayoclinic.org/discussion/your-tips-traveling-and-getting-medical-care-safely-during-covid-19/

Thanks goodness you were asymptomatic given your diagnosis of bronchiectasis. How long ago did you test positive for COVID? How are you feeling now?

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@mrf5629 Hello Beth,
First, I am glad to hear you came through Covid-19 without a lot of symptoms.

Second, based on your descriptions of "trending worse" and needing a Z-pak frequently, it is definitely time for a sputum culture to see what you have. MAC is everywhere – air, soil, water… , is very slow-growing, by the time you are symptomatic it quite probably has been making a home in your lungs for many months if not years. What makes MAC challenging for those of us with bronchiectasis is that our lungs do not clear bugs out like normal lungs would. Please don't blame your use of the neb & Aerobika – it infections probably already there. Just be sure to clean them thoroughly going forward.

Third, if I was already a Mayo patient, I would definitely seek care in the Bronchiectasis Clinic – why not see the best?

Finally, when they do the culture, it can take 2 weeks (pseudomonas) to 2 months (MAC & sensitivity tests) to get definitive results. Patience is needed.

Check back with us if you have more questions
Sue

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Thx for the information links! I only tested positive that one time. Because it delayed my appointments, I had to be retested 2x before being seen and was negative for both, 2 weeks later. Due to some scheduling snafus, I actually wound up having a third follow up test which was also negative. I feel that I dodged a bullet on this one. Disappointingly, I requested a serum antibody test to check immunity and it came back with negative for antibodies, so I believe I may not gained any protection unless the theories on T cells is true. The recent news that people can become reinfected, possibly with a different strain, is alarming as it makes the likelihood of an effective vaccine seem very remote.
About how I have felt since COVID, I’m despondent because although I sailed through that, my symptoms seem to be getting worse by the week and despite faithfully abiding by every treatment and technique my doctor has recommended, nothing helps for more than a couple of days.
I actually think I might have had COVID originally in late November as I was so ill with respiratory issues I thought I might die. First time in my life I ever remember having what they diagnosed as bronchitis. I know they don’t think it was in the US at that time, but I live in Rochester and know for a fact that multiple Mayo physicians and professionals were traveling to all parts of China 2 weeks out of every month for business reasons and/or patient consults/scientific lectures, etc., so I think it’s reasonable to question whether it was on a slow simmer here in Rochester very early. I honestly have never fully recovered from that bout last November. It marked the end of a normal lifestyle for me and began the world of Nebulizers, inhalers, and ultimately to the Bronchiectasis diagnosis in March. The doctor did say that with my Alpha MZ allele, the bronchitis in November may have been enough to cause the Bronchiectasis. I will never know if it was COVID or just a bad infection because there was no awareness or testing at that point in time.
I probably sound like I’m obsessing about COVID but I think I’m still in that early denial stage where I’m just trying to figure out why and how I ended up with this lung condition I had never even heard of before March and what it means for my future.

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@sueinmn

@mrf5629 Hello Beth,
First, I am glad to hear you came through Covid-19 without a lot of symptoms.

Second, based on your descriptions of "trending worse" and needing a Z-pak frequently, it is definitely time for a sputum culture to see what you have. MAC is everywhere – air, soil, water… , is very slow-growing, by the time you are symptomatic it quite probably has been making a home in your lungs for many months if not years. What makes MAC challenging for those of us with bronchiectasis is that our lungs do not clear bugs out like normal lungs would. Please don't blame your use of the neb & Aerobika – it infections probably already there. Just be sure to clean them thoroughly going forward.

Third, if I was already a Mayo patient, I would definitely seek care in the Bronchiectasis Clinic – why not see the best?

Finally, when they do the culture, it can take 2 weeks (pseudomonas) to 2 months (MAC & sensitivity tests) to get definitive results. Patience is needed.

Check back with us if you have more questions
Sue

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@migizii May I ask, what is the bronchiectasis clinic vs the Pulmonology department?

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@migizii

@migizii May I ask, what is the bronchiectasis clinic vs the Pulmonology department?

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My understanding is that it is a multidisciplinary team lead by a pulmonolgist with expertise in bronchiectasis/MAC. All the pulmonologists at Mayo are very good but each of them has a particular area of expertise.

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@sueinmn

@mrf5629 Hello Beth,
First, I am glad to hear you came through Covid-19 without a lot of symptoms.

Second, based on your descriptions of "trending worse" and needing a Z-pak frequently, it is definitely time for a sputum culture to see what you have. MAC is everywhere – air, soil, water… , is very slow-growing, by the time you are symptomatic it quite probably has been making a home in your lungs for many months if not years. What makes MAC challenging for those of us with bronchiectasis is that our lungs do not clear bugs out like normal lungs would. Please don't blame your use of the neb & Aerobika – it infections probably already there. Just be sure to clean them thoroughly going forward.

Third, if I was already a Mayo patient, I would definitely seek care in the Bronchiectasis Clinic – why not see the best?

Finally, when they do the culture, it can take 2 weeks (pseudomonas) to 2 months (MAC & sensitivity tests) to get definitive results. Patience is needed.

Check back with us if you have more questions
Sue

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Sue, I have a question. Regarding both the Aerobika and Albuterol inhalers, do you feel we should clean them after every use? Also, when you say clean, how? Soap and water? Sterliizing? Can you elaborate, please. Thank you, Toni

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@toni1132

Sue, I have a question. Regarding both the Aerobika and Albuterol inhalers, do you feel we should clean them after every use? Also, when you say clean, how? Soap and water? Sterliizing? Can you elaborate, please. Thank you, Toni

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I follow the advice of my pulmonary nurse. Soap and water soak for 10 minutes or more once a day for neb and Aerobika, air dry on clean paper towel, alcohol bath 15 minutes every week or so. Carry a small covered container and supplies to do when traveling.

Inhaler cases and extender weekly soap and water soak. If I remember I grab the inhalers from my purse and backpack too. I figure they need cleaning from bouncing around in there even if not used much.

My daughter has her students wash their inhalers or neb cups out with soap and water if used in her office.

We also are diligent about scrubbing reusable water bottles lids and straws with HOT soapy water and brushes. Haven't found any I like that survive the dishwasher for very long.
Sue

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@sueinmn

I follow the advice of my pulmonary nurse. Soap and water soak for 10 minutes or more once a day for neb and Aerobika, air dry on clean paper towel, alcohol bath 15 minutes every week or so. Carry a small covered container and supplies to do when traveling.

Inhaler cases and extender weekly soap and water soak. If I remember I grab the inhalers from my purse and backpack too. I figure they need cleaning from bouncing around in there even if not used much.

My daughter has her students wash their inhalers or neb cups out with soap and water if used in her office.

We also are diligent about scrubbing reusable water bottles lids and straws with HOT soapy water and brushes. Haven't found any I like that survive the dishwasher for very long.
Sue

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I must be courting disaster. I’ve never done more than a hot water and bar soap clean-up after each use of the mouthpiece and leave them to air dry. I find the lengths some report going daunting. Don

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@thumperguy mine is a bit daunting! Yours sounds much better.Heather

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@thumperguy

I must be courting disaster. I’ve never done more than a hot water and bar soap clean-up after each use of the mouthpiece and leave them to air dry. I find the lengths some report going daunting. Don

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It's doesn't take as much time to do it as it took me to type it!
I have a plastic storage tub just the right size, a drop of soap, hot water & walk away – come back later, rinse & set out to dry. The alcohol routine is just as quick & easy. We have "nebbed" at our house for almost 40 years using this routine, and as far as I know have never acquired a "bug" from dirty equipment.
Sue

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Well Sue, I must admit your routine doesn’t seem as “daunting” as it has morphed into in my memory.

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@sueinmn

I follow the advice of my pulmonary nurse. Soap and water soak for 10 minutes or more once a day for neb and Aerobika, air dry on clean paper towel, alcohol bath 15 minutes every week or so. Carry a small covered container and supplies to do when traveling.

Inhaler cases and extender weekly soap and water soak. If I remember I grab the inhalers from my purse and backpack too. I figure they need cleaning from bouncing around in there even if not used much.

My daughter has her students wash their inhalers or neb cups out with soap and water if used in her office.

We also are diligent about scrubbing reusable water bottles lids and straws with HOT soapy water and brushes. Haven't found any I like that survive the dishwasher for very long.
Sue

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Sue, thank you very much for this info. I think I had better step up my cleaning schedule ~ I do appreciate your input !!

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@mrf5629 Hi Beth. I too am an Alpha-1 carrier and have had bad lung issues my entire adult life. My mother was full blown Alpha-1 and passed away at the age of 58. I was always terrified that I too would not live beyond that age as I had been very ill since 2005. I am now 61 yrs old and doing pretty good except for low lung function and shortness of breath. But I ROCK ON! I hope you will read back over older posts on this site as there is a treasure trove of info here. You can scroll down the Discussion Board and click on a topic to learn about. i.e. water testing, swimming pools and hot tubs, shower heads, pseudomonas, etc. I encourage you to learn all that you can about your lung disease(s) so that you can be your best health advocate. Have you visited the Alpha-1 Foundation site as well? May I ask how you found this group?

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@mrf5629

My understanding is that it is a multidisciplinary team lead by a pulmonolgist with expertise in bronchiectasis/MAC. All the pulmonologists at Mayo are very good but each of them has a particular area of expertise.

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Beth, the Mayo Clinic absolutely saved my life. I was in very bad shape when I started going there in 2013. In 2016, I was pre-qualified for a double lung transplant, I was able to avoid it by eliminating the massive infections I had going on. In 2013, I could not walk 10 feet without having to stop and sit and catch my breath. Going to a mall was out of the question, as was hiking and biking. Now, I walk and ride a bike indefinitely; provided the heat and humidity level isn't too bad. It was a long road to recovery, and it still takes diligence to stay well, but I did it. You can too!

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@mrf5629

Thx for the information links! I only tested positive that one time. Because it delayed my appointments, I had to be retested 2x before being seen and was negative for both, 2 weeks later. Due to some scheduling snafus, I actually wound up having a third follow up test which was also negative. I feel that I dodged a bullet on this one. Disappointingly, I requested a serum antibody test to check immunity and it came back with negative for antibodies, so I believe I may not gained any protection unless the theories on T cells is true. The recent news that people can become reinfected, possibly with a different strain, is alarming as it makes the likelihood of an effective vaccine seem very remote.
About how I have felt since COVID, I’m despondent because although I sailed through that, my symptoms seem to be getting worse by the week and despite faithfully abiding by every treatment and technique my doctor has recommended, nothing helps for more than a couple of days.
I actually think I might have had COVID originally in late November as I was so ill with respiratory issues I thought I might die. First time in my life I ever remember having what they diagnosed as bronchitis. I know they don’t think it was in the US at that time, but I live in Rochester and know for a fact that multiple Mayo physicians and professionals were traveling to all parts of China 2 weeks out of every month for business reasons and/or patient consults/scientific lectures, etc., so I think it’s reasonable to question whether it was on a slow simmer here in Rochester very early. I honestly have never fully recovered from that bout last November. It marked the end of a normal lifestyle for me and began the world of Nebulizers, inhalers, and ultimately to the Bronchiectasis diagnosis in March. The doctor did say that with my Alpha MZ allele, the bronchitis in November may have been enough to cause the Bronchiectasis. I will never know if it was COVID or just a bad infection because there was no awareness or testing at that point in time.
I probably sound like I’m obsessing about COVID but I think I’m still in that early denial stage where I’m just trying to figure out why and how I ended up with this lung condition I had never even heard of before March and what it means for my future.

Jump to this post

Beth, I too have a sneaking suspicion that covid was here earlier than Jan 2020. I got a flu shot last fall as I have for the last 20 yrs. The flu shots never made me sick, but that last one made me feel like I wanted to die! I could not move for three days, because if I did, my head felt like it would explode and every muscle in my body hurt. I mean it hurt bad! I even am suspicious that that was no ordinary flu vaccine. I don't mean to scare anybody about getting your flu shots, but honestly, I am afraid to get one now.

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