Discussions

Has anyone purchased an under mattress wedge to help with nighttime acid reflux? It seems it might work better than a wedge pillow.

Hello everyone,

I'm new to the Bronchiectasis & NTM community and wanted to introduce myself. I have recently started learning more about bronchiectasis and NTM and I’m here to better understand the condition, treatment options and day to day management.

I’m especially interested in hearing about others’ experiences,what has helped you manage symptoms, any tips for maintaining lung health and how you navigate treatments or lifestyle changes.

It can feel overwhelming at first so I am really glad to have found a space like this where people share knowledge and support one another. I’m looking forward to learning from you all and contributing where I can.

Thank you in advance for any guidance or advice!

Best regards,
wajo23

Sleep is essential for healing and for functioning on a daily basis. Simple daily tasks, such as meal preparation, bathing and other activiites of daily living require menatl and physical energy. We do not have the energy if we are sleep deprived.The article below reviews specialists who assist individuals with sleep disorders You've Done Everything Right. So Why Are You Still Not Sleeping? - National Sleep Foundation

Multiple CTs have shown possible NTM MAI but every bronchoscopy and sputum labs have been negative. I have had the fundiplication Ctiff surgery, 4 sinus procedurbues and continue to have heavy thick sputum daily with non-stop coughing. I use 7% sodium to nebulize and when necessary Acetylcysteine with Albuterol. I also take Brinsupri (just started a few weeks ago). I was diagnosed with with Bronchiectasis in 2016 and have struggled for years. Any suggestions/ideas what/where I can find help/answers.

I am a newly diagnosed case of bronchiectasis. So far, no NTM present. Yesterday, all of a sudden, I had severe chills, body aches, fatigue, and fever. As the afternoon progressed, my chest and entire abdomen started to hurt, and it was somewhat painful to take a deep breath. It was incredibly painful to cough. I went to an urgent care, where they did an X-ray that did not indicate pneumonia or anything else abnormal. They also ran a urine test to check for UTI. A sputum sample from about two weeks ago had indicated haemophilus, which my pulmonary doctor chose not to treat because I was feeling okay. The attending PA at Urgent Care prescribed doxycycline, which I started to take last night. Today, the fever is mostly gone, and the pain has subsided. No issues breathing. The fatigue is still present but not as bad 24 hours ago. My question is, is abdominal and chest pain, radiating also to my back, typical of an exacerbation? I have never had that sort of pain before, it was intense, and I was rather scared. Any advice on your experiences is appreciated. Thank you.

BiomX just dropped a study for a drug to treat Pseudomonas, which was disappointing, but Clarametyx is now also working on clinical trials for a drug to treat Pseudomonas in the lung. Here is a link from a recent news release if you haven't seen it.

https://clarametyx.com/clarametyx-biosciences-anno...

Hi all, Just had a Bronchiectasis flare a couple of weeks ago. I am on Albuterol via nebulizer. Pulmonologist also said use Sodium Chloride 7% solution for nebulizer 1-2 times a day to help thin mucus. Medicare Part B rejected the Sodium Chloride. Pharmacist said she has only had one person get Part B to cover it when the patient is on a maintenance respiratory drug such as a steroid. Otherwise the doctor office said I just have to pay out of pocket for the Sodium Chloride. Medicare has been absolutely no help answering any questions. What has been your experience in getting this? Very frustrating for sure.

Sleep is an essential part of the healing process. Sleep provides restoration within our bodies. It impacts our ability to perform our daily tasks such as airway clearance, treatments, preparation of highly dense nutritious foods , energy to exercise and so much more. The blog article below reviews the basics of sleep, including the different phases of the sleep cycle. Please share your experiences and tips for a better night’s sleep with the community. https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Blog/Article/150/Sleep-and-Healing-for-NTMBronchiectasis-Patients

Apparently Toyota (in Europe) includes a Panasonic technology in the air conditioning system in some of its cars. Nanoe-X technology feeds trillions of nano-sized, atomized water particles into the ventilation airflow. These hydroxyl radicals have been proven in independent laboratory testing to have wide-ranging beneficial effects when used in enclosed spaces. Inside vehicles such as the Corolla (in Europe), these can include: -

• Inhibiting the activity of airborne bacteria and viruses
• Helping prevent the spread of mould
• Inhibiting pollen and other allergens, such as those linked to pets
• Breaking down hazardous substances found in particulates (PM2.5)
• Eliminating common, unpleasant odours

Since this puts water into the air, I wonder whether this type of technology is safe if you have NTM? I don't know if any cars in the US have this technology.

https://newsroom.toyota.eu/toyota-focuses-on-new-technologies-for-the-2024-corolla-range/

Hi,

Recently found out I have MAC again (successfully treated m.avium species 10 years ago) but now have intracellular species and seems to be macrolide resistant. I have been looking at some very negative outcomes online for this scenario and wondering is there is anyone else out these who is experiencing this and what to expect moving forward for treatment plan .

With BE is it safe to inhale doterra essential oil breathe in a cup of boiled water?

I have recently been diagnosed with mild bronchiectasis. I am reading what i can online about it, but there is just so much to take in.. When i'm well i don't have much of a cough, and then when i do cough its very dry, and difficult to bring anything up. I want to get into a good daily routine but just finding it hard to get into and understand whats best for me, feels like ACBT doesn't clear anything (i had a 30min chest physio app to show me this). With two young kids its so hard to find time for myself and I'm starting to realise with bronchiectasis its important to find time for yourself to be able to manage things well. Any reassurance that things will get easier to understand and how best to manage self care when feeling a bit lost at the start would be appreciated!

Hello, I was recently diagnosed with bronchiectasis and potentially NTM (awaiting sputum sample results). We currently have a trip planned for out of the country (Spain and Greece) for mid-May. Right now I am coughing a great deal, despite religiously doing my airway clearance (sodium chloride 3% solution, Acapella device, huff coughing). I am getting very concerned about traveling, because if I have a coughing attack when trying to go through customs I am very concerned that they will not let me into the country. It will also be very difficult to sleep in the same room with my husband since the coughing flares at night. There doesn't seem to be any way to make myself stop coughing. I really don't know if I am in an exacerbation or if this is my new reality. Previously, I coughed a fair amount, but it was usually triggered by laying flat or reclining. Now it is more unpredictable and much more prevalent. Does anyone have any advice? I am going back to see the Pulmonary PA (doctor unavailable until June) tomorrow to discuss but am interested in others' experience, particularly when traveling. Thank you.

Hello, I was recently diagnosed with bronchiectasis and potentially NTM (awaiting sputum sample results). Based on everything I read, I requested a referral to the UNC Bronchiectasis & NTM Clinic, in order to take advantage of the expertise and integrated care available at a specialized clinic. However, I was not accepted into the clinic (reasons not provided). Has anyone else experienced this and do you have any advice for how to get accepted into the clinic? Thank you.

I'm sure I heard on a webinar something about HRT and NTM/BE. Does anyone know of any studies into the effect of HRT on post menopausal women who get NTM? I'm wondering if it might help prevent NTM in the first place, but then once you've got it, or had it, I'm then wondering if the HRT has a positive or negative effect on stable conditions or any medications when not stable.

Mucolytics are medications that thin or break up the sputum in your lungs, making it easier to cough up and out. These medications assist one to clear out the mucus as much as possible. Below is a link to the different medications. Please let us know if you have any specific questions. Medicines for Airway Clearance | Bronchiectasis and NTM Association

Have looked through the questions/answers on NAC. Saw this about 3 months ago. https://pmc.ncbi.nlm.nih.gov/articles/PMC12603500/

I have asthma/Bronchiectasis. People taking this were in threads a while ago. I don't want to take more supplements than I have to, and get sick with colds/exacerbations from Oct. -March, but healthy April-Oct. Do those of you who take 1200 of NAC daily, a) still do that and b) any recommendations on just taking it for me between Oct-March?

The Key Difference between the two:

Together, they give a complete picture of function and acid exposure, which is especially important when managing conditions such as BNTM.

If symptoms aren’t improving with standard reflux treatment, pH testing can provide the clarity needed to adjust the plan confidently.

Hi. My diagnosis is mild bronchiectasis. Typically I have to clear airways every 4 to 5 days. But it takes me up to 3 hours to clear airways start to finish. From what I read on this blog, I am slow! Currently steaming for 15 minutes, nebulizing with saline for 15 minutes, postural drainage on one side in 2 positions each about 15-30 minutes with huff coughing which clears that side of my lungs Then back to a little steam, 10-15 more minutes of nebulizing, and then the other side with 2 postures and huff coughs for another 15-30 minutes. There has to be a better way. I've had a lot of recent flares so I am doing this every day to every other day lately. Please advise.

KB

If anyone is on Brinsupri, I would love to hear your expeience

Currently undergoing allergy shots. Lately any exposure to outside air flares the bronchiectasis. Are these flares likely to increase the frequency of the need to clear lungs or will the frequency return to what it has been? When at maintenance with allergy shots, will the difficulty with outside air improve significantly or be gone?.

Nasal washes are solutions used to rinse out your nasal passages and sinuses using a saline(saltwater) mix. I find using these washes beneficial, especially throughout the winter months when we are dealing with dry heat in our homes. These washes moisturize our nasal passages, improving sinus and breathing comfort.

Always use safe water, such as boiled water for 10 minutes, and then cool the water before using.

There are many different brands, with Neil Med being the most advertised brand. Navage Saline Irrigation Starter Kit, Equate Comfort Flow Bottle Nasal Wash System, and Nasalfresh MD Dual Powered Nasal Irrigation System are a few other brands. You can order these on Amazon or purchase them at a local pharmacy.

Do you have any suggestions on nasal washes for our community?

I've been through all processing for the Airtivity clinical trial, and all good so far. Now the stumbling block for me is to produce a good sputum sample. Apparently I won't get on the trial if I cannot produce two good samples. I am not allowed to use hypertonic saline to induce one either. I'm not a good sputum producer, I even tried the Madison & Dale sputum collection method this morning. I'm drinking plenty as well. I can only get lots of little "good" bits, but I don't think collecting throughout the day into one pot is acceptable.

Any other suggestions please. What works for you?

I have had colonized Pseudomonas for 2 years. Recently I took a strong dose of Levaquin (after having no antibiotics for the past 2 years) for pneumonia and the last sputum culture indicated no presence of Pseudomonas.

I fear a reoccurrence and am asking others to comment on this smart and persistent bacteria.

As the cold weather begins to roll in, we must face the fact that flu season is around the corner.
Doing airway clearance regularly may assist you in lessening the chances of respiratory infections.

Hopefully, you were able to get the flu shot- whether it is the basic flu shot or the Fluzone

The link below reviews the different devices and medications for airway clearance.
https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Coping-with-Airway-Mucus

Please let us know if you have any questions.