Avoiding pneumonia after Bronchiectasis diagnosis

Posted by kjellis @kjellis, Tue, Mar 5 10:55am

I was diagnosed with Bronchiectasis in February of 2018 after a third hospital stay with pneumonia. I have read all that i can find. Knowledge is power, right? However, it seems that each case is different. i find it difficult to not be somewhat of a germaphob and paranoid about trying to stay out of the hospital with pneumonia. How does everyone else handle this? do you ever want to wear a mask everywhere you go? I am on a rotation of primarily 3 different antibiotics each month for about 10 days each month. I also use an acapella, incentive spirometer, and postural drainage. I use NAC and Mucinex as well as a nebulizer twice daily. I look forward to hearing from others and how this is handled by others.

@kjellis…Welcome to the group. Many others will have suggestions, but I know waiting for a response is difficult, so I'll tell you what I've been doing. My Bronciectasis is caused primarily by acid reflux. I sleep in an upright position and that has made a world of difference. I schedule all medical appointments from April through November, never in the winter. My husband picks up groceries and my monthly medications and the rest I order by mail. I don't allow grand children visits in winter. Thanksgiving is my holiday, and we make Christmas a flexible quick visit, so they are the only exceptions unless they are sick. We have a couple made-up holidays in spring and summer. I use hand sanitizer every time I leave the house and a mask if I have to wait in waiting room.
I also use nasal lavage every other day. These things have worked for me after the 14 month big three regimen and several bronchoscopies showed that MAC was absent.I take Dr. Tobias's Lung Meister daily plus Candida Cleanse after tests showed my lungs were full of it. I've been healthy since.

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big three regimen How did they make you feel everyday?

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@kjellis I may be in the minority, but I have tried to limit how much change I make in my life because of bronchiectasis and MAC -perhaps because I have spent my life with other challenges, surrounded by people with health issues, and we have all tried to live "normal" lives. I realize every case is different, but here is how I manage:
I DO NOT isolate myself at home – am out and about every day – shopping, socializing, going to church, volunteering in my community… I spend time with my daughters & grandchildren, even sometimes caring for an ill little one. I stay away from sick people as much as possible, but I don't panic if someone coughs or sneezes near me. We travel, often staying in motels or with friends and family, occasionally flying.
What I DO: I take my meds as prescribed and sanitize my devices faithfully. I eat a very healthy diet with lots of fruits & vegetables. I keep moving, mainly walking & dancing to keep my body strong. I WASH, Wash, wash my hands with soap and water incessantly. I keep my hands away from my face & mouth & wash them before eating or drinking anything. I take an immune booster if I have been exposed to a lot of people in close quarters, or if I feel a cold trying to break through. I stop and rest for a day or two if I feel like my body is fighting an illness. I use hand sanitizer if real handwashing is not possible. I keep my home, car, electronic devices, other surroundings as sanitary as possible. I keep water bottles, cups, drinking glasses, etc scrupulously clean. I know MAC is harbored big-time in the soil where we winter, so when mowing or other yard work is going on, I stay indoors with the filter running, and the patio and furniture are washed before I use them.
For the 2 years before diagnosis, I was very sick and fatigued, and coughed non-stop. So far, almost a year after diagnosis, on many meds including the "big 3" antibiotics, I have not caught any viruses or bugs. I tire easily, so I try to get extra rest. My worst remaining issue is trying to maintain adequate body weight, so I eat extra nutrient-dense food, smoothies, protein powder shakes, and take a good probiotic.
Good luck as you start this journey. Remember, it is a "life sentence" not a "death sentence," keep going and don't give up.

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@egayle187

@kjellis…Welcome to the group. Many others will have suggestions, but I know waiting for a response is difficult, so I'll tell you what I've been doing. My Bronciectasis is caused primarily by acid reflux. I sleep in an upright position and that has made a world of difference. I schedule all medical appointments from April through November, never in the winter. My husband picks up groceries and my monthly medications and the rest I order by mail. I don't allow grand children visits in winter. Thanksgiving is my holiday, and we make Christmas a flexible quick visit, so they are the only exceptions unless they are sick. We have a couple made-up holidays in spring and summer. I use hand sanitizer every time I leave the house and a mask if I have to wait in waiting room.
I also use nasal lavage every other day. These things have worked for me after the 14 month big three regimen and several bronchoscopies showed that MAC was absent.I take Dr. Tobias's Lung Meister daily plus Candida Cleanse after tests showed my lungs were full of it. I've been healthy since.

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@egayle187 Thank you so much for your response. I appreciate the helpful hints when it comes to family time and knowing I am not just being paanoid

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@poppins

big three regimen How did they make you feel everyday?

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Recently I have had issues with dizziness. I should have mentioned in my original post that my lungs have an accumulation of mucus and phlegm, which are both proteins. Germs and bugs thrive on protein. They will then cause an infection which goes into pneumonia. I was diagosed with asthma as a child. I was on inhalers and steroids quite often.

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@sueinmn

@kjellis I may be in the minority, but I have tried to limit how much change I make in my life because of bronchiectasis and MAC -perhaps because I have spent my life with other challenges, surrounded by people with health issues, and we have all tried to live "normal" lives. I realize every case is different, but here is how I manage:
I DO NOT isolate myself at home – am out and about every day – shopping, socializing, going to church, volunteering in my community… I spend time with my daughters & grandchildren, even sometimes caring for an ill little one. I stay away from sick people as much as possible, but I don't panic if someone coughs or sneezes near me. We travel, often staying in motels or with friends and family, occasionally flying.
What I DO: I take my meds as prescribed and sanitize my devices faithfully. I eat a very healthy diet with lots of fruits & vegetables. I keep moving, mainly walking & dancing to keep my body strong. I WASH, Wash, wash my hands with soap and water incessantly. I keep my hands away from my face & mouth & wash them before eating or drinking anything. I take an immune booster if I have been exposed to a lot of people in close quarters, or if I feel a cold trying to break through. I stop and rest for a day or two if I feel like my body is fighting an illness. I use hand sanitizer if real handwashing is not possible. I keep my home, car, electronic devices, other surroundings as sanitary as possible. I keep water bottles, cups, drinking glasses, etc scrupulously clean. I know MAC is harbored big-time in the soil where we winter, so when mowing or other yard work is going on, I stay indoors with the filter running, and the patio and furniture are washed before I use them.
For the 2 years before diagnosis, I was very sick and fatigued, and coughed non-stop. So far, almost a year after diagnosis, on many meds including the "big 3" antibiotics, I have not caught any viruses or bugs. I tire easily, so I try to get extra rest. My worst remaining issue is trying to maintain adequate body weight, so I eat extra nutrient-dense food, smoothies, protein powder shakes, and take a good probiotic.
Good luck as you start this journey. Remember, it is a "life sentence" not a "death sentence," keep going and don't give up.

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@sueinmn Thank you for the encouraging words. I was able to stay out of the hospital for a year. I celebrated each milestone. I was on antibiotics quite often it seemed. It is with those setbacks with the pneumonia and hospital stays that I seem to want to stay isolated more. Especially with all the sicknesses going around right now. Thankfully i do have hobbies to keep me busy. I am trying to be more active to exercise my lungs. I also struggle with my body weight. I drink lots of water, protein shakes, and eat non processed food, as well as a good probiotic. I appreciate your kind words and sharing your journey with me.

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Hi @kjellis you may have noticed I changed the title of your discussion to "Avoiding pneumonia after Bronchiectasis diagnosis" in order for other users with the same concerns can take part in the conversation.

I want to thank @egayle187 @poppins and @sueinmn for responding to your initial post. Has your doctor provided any additional guidance with this?

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@ethanmcconkey

Hi @kjellis you may have noticed I changed the title of your discussion to "Avoiding pneumonia after Bronchiectasis diagnosis" in order for other users with the same concerns can take part in the conversation.

I want to thank @egayle187 @poppins and @sueinmn for responding to your initial post. Has your doctor provided any additional guidance with this?

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Thank you for making that change for me. My Doctors stress the need to perform the postural drainage more to help drain mucus from my lungs. I am also on an antibiotic rotation. The last bout of pneumonia actually occurred when I was taking an antibiotic and a steroid.

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@kjellis

Recently I have had issues with dizziness. I should have mentioned in my original post that my lungs have an accumulation of mucus and phlegm, which are both proteins. Germs and bugs thrive on protein. They will then cause an infection which goes into pneumonia. I was diagosed with asthma as a child. I was on inhalers and steroids quite often.

Jump to this post

@kjellis, Hi there, do you have a first name? It is ok if you prefer not to share that. I find it more personal than just going by an @name. Welcome to our group, I am so glad that you found us. There is a wealth of information in our older conversations as well as the new ones. I hope you will take the time to read over as much as you can. There are various ways to navigate around this site. Please let me know if you need help with that because there are many ways to gather the info here. I see you are trying to stay germ free as much as possible, and that is wise. I find that it pays to be more careful. For example, if I go into a store, I always grab the door handle at the bottom where others rarely do. When I eat in a restaurant, I wipe down the drinking class with a sanitizer wipe and sometimes the silverware. I have caught most of my colds after eating in a restaurant. During flu season, I send my hubby out to get the groceries. (he loves doing it) Before people come over for a visit, I always ask if they have the sniffles or a cough before I agree to company. Avoiding contagious illnesses is the biggie for us. I do not make myself crazy with trying to avoid mac in the environment. I gave up gardening for the most part. When I do dabble in the yard, I am very cautious. Mostly, I wash my hands often throughout the day and don't dig in the dirt or mess with potting soil. I see that you nebulize daily. Do you do the nebulized saline (sodium chloride)? That is a good one for staying out of the hospital. For awhile there, I had annual visits to the hospital as well. I set a goal on New Year's Eve of 2018 to stay out of the hospital. Mission accomplished for 2018! I have the same goal for 2019.

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@windwalker

@kjellis, Hi there, do you have a first name? It is ok if you prefer not to share that. I find it more personal than just going by an @name. Welcome to our group, I am so glad that you found us. There is a wealth of information in our older conversations as well as the new ones. I hope you will take the time to read over as much as you can. There are various ways to navigate around this site. Please let me know if you need help with that because there are many ways to gather the info here. I see you are trying to stay germ free as much as possible, and that is wise. I find that it pays to be more careful. For example, if I go into a store, I always grab the door handle at the bottom where others rarely do. When I eat in a restaurant, I wipe down the drinking class with a sanitizer wipe and sometimes the silverware. I have caught most of my colds after eating in a restaurant. During flu season, I send my hubby out to get the groceries. (he loves doing it) Before people come over for a visit, I always ask if they have the sniffles or a cough before I agree to company. Avoiding contagious illnesses is the biggie for us. I do not make myself crazy with trying to avoid mac in the environment. I gave up gardening for the most part. When I do dabble in the yard, I am very cautious. Mostly, I wash my hands often throughout the day and don't dig in the dirt or mess with potting soil. I see that you nebulize daily. Do you do the nebulized saline (sodium chloride)? That is a good one for staying out of the hospital. For awhile there, I had annual visits to the hospital as well. I set a goal on New Year's Eve of 2018 to stay out of the hospital. Mission accomplished for 2018! I have the same goal for 2019.

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Hi Terri. My name is Karla. I am glad I found this group too There seems to be so much guess work with this diagnosis which can really frustrate me. I gave up the garden last year as the previous year my husband had to finish everything since I was so sick at the end of the season in 2017. Thankfully we started making all the flower beds smaller the year before the diagnosis. I have always enjoyed being outside even with the environment allergies that I deal with as well as asthma. I use Albuterol Sulfate in the nebulizer twice a day. sometimes three times a day. Then I use the Acapella, postural drainage, and incentive spirometer at least 4 times a day. I have a goal of staying out of the hospital for another year now. I do plan to read through a lot of the information provided. i will definitely be in touch with you as I look through all of the information with questions I may have. One question that I do have is about antibiotics. I am making a point to wash my hands more regardless of anything else. I don't like the idea of being isolated at all, so I will have to be more aware of my habits now. Thank you for all of your help.

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@kjellis Hi Karla. What question do you have about antibiotics? Also, Kudos for staying out of the hospital last year.

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