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To start or not to start the antibiotics?
Hello,
I’m a 50 year old female, I was diagnosed with Bronchiectasis last year and MAC a month ago. For about 3 years I haven’t been able to really lay down in certain positions without coughing for 10 minutes. I finally went to have my lungs checked out last year and was diagnosed with Bronchiectasis. My current doc is not at Mayo, but I found this forum because I wanted to hear about others’ experience with the disease.
I’m trying to decide if I should start the antibiotic treatment now. I’m not coughing much these days, I’m eating well and the disease isn’t really interfering with my daily life. My doc said it was fine if I wanted to wait and have another CT in 6 months to see how things are.
I read one of the side effects of one of the drugs is losing color vision and blurred vision. I’ve been profoundly deaf since I was 4.5 years old and it scares me that I might have vision problems from the drugs. Has anyone experienced this? If you stop taking the drugs, does vision return to normal??
I also have acid reflux so I’m worried about how the drugs will affect my gut.
Thanks for any feedback you can give!
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Yeah, I noticed my insurance didn’t cover the saline. It wasn’t that expensive anyway. Does this mean we will have to use the saline nebs for the rest of our lives or only when the MAC is acting up?
When I asked Dr. Winthrop at OHSU about avoiding MAC he said that's what the nebulizing and other airway clearance is for—prevention. The more mucus we keep out of our airways the less chance of ANY bugs having the opportunity to grow. Unless they come up with a miracle I expect to do this for the rest of my life.
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3 ReactionsI agree - better to prevent than have mucous build-up in our lungs!
I just opened the box for the nebulizer and just became overwhelmed how much work it is. I have to clean it after each use? My doc recommended that I use it every 2-3 hours. That’s crazy. I work full time. Do you bring it with you on vacation? Just kind of depressed how much work it is going to be 🙁
Wow! Every 2-3 hours and a full time job! That is a lot! I nebulize first thing in the morning, usually 7am, and then about 5pm*, before dinner. I do wash equipment in soap and water after each time, rinse with hot sterile water and put on clean towel to dry. I soak in vinegar and water at recommended ratios every couple weeks and try to sterilize by boiling once a week (which my doctor recommends). I am often grateful that I'm not trying to work, raise kids and all that. I do take it when away from home and do the best I can, but often once a day is what happens. Same with when we have guests here. I am not nearly as strict as many people, nor as sick. I'm hoping to avoid the antibiotics, as well as further deterioration of my lungs, so the effort is worth it to me, but I don't stress when I don't manage to do the max. *Often that 5pm airway clearance is a little rushed and not quite as thorough, but better than nothing.
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3 ReactionsEvery step when first dealing with MAC and bronchiectasis seems like a lot, taken together they are overwhelming. First, lets' take a little step back and a deep breath, then talk about what is really important to staying healthy and off antibiotics.
What medication has the doctor recommended you neb every 2-3 hours? Most of us, unless we are in an exacerbation, neb saline either once or twice a day.
Nebbing - Some of us find we can use an albuterol or levalbuterol inhaler (2 puffs) 10 or 15 minutes before nebbing instead of a full albuterol neb. (Saves another 15-30 minutes.)
Airway Clearance - Using huff coughing, Aerobika, whatever technique works for you. If you don't have a lot of mucus, this can take as little as 5-10 minutes. If you are sick and plugged with mucus, longer. The object isn't to get every last bit of mucus out every time - it is to keep it loose and moving, minimize coughing, and observe the color and thickness - a change to green, greenish brown or cloudy signals a worsening infection and time to consult the doc.
Cleaning & Sterilizing - After nebbing, wash the neb cup & mouthpiece (not the tubing) thoroughly in hot soapy water and set it to dry on a clean towel. If you are using an Aerobika or Acapella device to help with airway clearance, do the same. Once a week, sterilize them - microwave sterilizer bag, baby bottle sterilizer or saucepan of boiling water on the stove.
What do I do? My bronchiectasis and lung images are "stable", my asthma controlled. I have very "sticky" mucus that has plagued me all my life. So in addition to nebbing & airway clearance, I use guaifenesin 600 mg time release and NAC 600 mg twice a day to thin it.
I have been off antibiotics nearly 4 years, and I nebbed saline & levalbuterol & did airway clearance twice a day after going off antibiotics (still was MAC positive) for over a year. Then I switched to a levalbuterol inhaler before neb - works just as well for me - and nebbed saline every morning. Still did airway clearance twice a day. For the past 6 months, I have used my inhaler and done airway clearance twice a day, but I have only been using the saline 3-4 times a week.
BUT---if I get a cold, stuffy nose, sore throat - any hint of respiratory illness - I go back to twice a day nebs, and if I get sick I go up to 3-4 times a day with my duoneb, and twice a day with saline. I had my last exacerbation (bronchitis) in February and got through it with a course of steroids and no antibiotics.
Everyone here will have a different story to tell, but the "magic" is learning how to keep your own body healthy with the least disruption.
So my morning routine takes about 20 minutes, and I do it while I read my email, in the evening 4-5 minutes, before I go to bed. Sterilizing once a week takes 20 minutes while I clean my kitchen. MAC bacteria is "slow to grow" so my ID doc agrees that once a week sterilization is adequate unless I have pneumonia or another infection.
Yes, my nebulizer does go with me on vacation (just like it used to go on business trips when I was working.) I keep a supply of disposable neb cups for traveling on long trips - use & wash for 7 days, then replace instead of sterilizing.
Can anyone else share how they have fitted their routine into their life?
Sue
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2 ReactionsThank you! I think 2-3 times a week is a lot, too. I’m going call my doctor tomorrow and ask if it’s ok if I do it in the morning and evening. My goal is to stay off the antibiotics so I need to be proactive. It is always overwhelming to start a new routine and I’m sure once I get into it, I’ll feel better about it.
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1 ReactionYou are correct, it is important to stay healthy and off the antibiotics. I haven’t even started them and my goal is not to have to start.
My doc didn’t prescribe any medication, just the 3% saline nebs. It sounds like I can nebs twice a day, I’m going to call my doctor tomorrow and ask if that is ok. It would make my life easier.
I appreciate you explaining in detail what you do, and sharing your experiences. I’m sure once I start the saline nebs and learning to clean it, it won’t seem so bad. I have just keep reminding myself it’s important to stay healthy!
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3 ReactionsI found 7% definitely more effective in the morning but found 3% better later in the day - generally around 5PM. I had nebulized with 3% for 3 years until I read about 7% on this site. I’m bringing up more green mucous with 7% almost immediately after nebulizing.
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2 ReactionsSue, as always, your advice and guidance are helpful and reassuring. I wish that I had had and known about this site when first diagnosed. The experience of others is invaluable when navigating all of this.
My doctor told me that she tells all patients to do the nebulizing and airway clearance with device for the rest of their lives. I, too felt so overwhelmed at first, but it makes me feel better, and my count of bacteria was drastically reduced after less than 3 months by taking 2 meds along with the nebulizing and airway clearance.
I am so determined to finish the course of meds successfully, that I am following all of the recommendations made by experts. Raised the water heater temp, avoid ice in public establishments, mask in most public spaces, use Guaifenesin and NAC, and keep my airway treatment supplies sterile.
I rinse and then boil my equipment twice a day, right after use. It is so easy. First, I nebulize. Then, I do the Aerobika. While I wash the Aerobika, I turn on the heat under my small pot to boil the water. While it is boiling, I do things in the kitchen. I use metal rings to remove the items after boiling and place them on layers of paper towels on my tray table in the corner of my bedroom where I do my nebulizer. They dry almost instantly after boiling.
Other than feeling extremely tired from the meds, I feel well and breathe well. I don’t cough, expect when doing airway clearance to get things out. The clearance is very effective and helps keep bacteria counts down.
The hardest thing after getting the diagnosis was acceptance. Next was finding a good doctor. Once I started the airway clearance, I felt that I had control over this disease and that my precautions could influence my future health. The clearance empowers you to be proactive and stay well.
Yes, it is a pain to have to do it all, but it becomes just another chore after a while, just like laundry or dishes- and you can do it while reading, watching tv, checking e mails (like Sue does), etc…
It is harder when you work, but use the time as a time for yourself. It is doable!
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