Discussions

I found a you tube video by Dr. Robert Bastian. He talks about a type of cough that is exactly what I have. His presentation is called Coughing That Won't Go Away. Has anyone seen this Doctor (near Chicago) or tried the medications he suggests?

Women with NTM and high level jobs . ( CEO, Managing director , etc ) . How do you get through your long stressful days coping with your disease?

I am wondering if they took a sputum sample to check what bus she may have? I was diagnosed 2014 but have asthma and emphysema.I am sure my bronchiectasis was caised from many lung infections. Xopenex neb followed by 7% hypertonic saline then go to the vest airway clearing system did really work for me. I do the vest set st 14 for 20 min. I then do brovana followed by spiriva then budensonide with Flovent inhaler ending this regiment. I love the saline mucinex doesn't Mywork for me but ppl do good with it. I hope this helps. Mine is good for a few then back to more again. My pulmo started me on zithromax 250 mg 3 times a week.

I've been told that distilled water is best to use with NeilMed, which I do at home. But how do I manage that when traveling in Europe? What type of water do you use at home and when traveling?

Good afternoon All!

I havent seen mentioned lobe reduction surgery as a possible way to aggressively intervene to remove the BE area of the lung where fluids and bacteria accumulate and bring on exacerbations.

Has anyone had this done and does it help?

Thanks much!

Greg

The patients and physicians at the recent Bronchiectasis and NTM conference in Texas implored all patients to exercise-saying it is a Critical Necessity!! What do you do on a daily or weekly basis to move your body and help your condition?

I was diagnosed last week with bronchiectasis. I am a physical education middle school teacher and am 49. I used to work out fairly regularly until I had to have a parathyroidectomy/thyroidectomy in the summer of 2017. It took half the year to get my life back together! I gradually began to work out again and was looking forward to a summer of health but the last day of school in 2018 I came down with an upper respiratory bug that then turned into bronchitis. I was so very sick. I found a pulmonologist in july and he put me on a barrage of meds (symbicort , spriiva, zrytec, singular, flonase,...the list goes on). I began to improve but it was slow. I made it through the winter even though I work in a petri-dish! But then in March I felt the same way I did the previous summer! I was super sick. The pulmonologist put me on prednisone and antibiotics but it took over 4 weeks. Needless to say, working out wasn't happening and hadn't been happening all school year. Two weeks ago I caught my husbands cold and it ended up starting to go to my chest. This time I didn't wait to see if things would clear up. I went back to the pulmonologist. That's when he tells me that the CT scan he had ran on my over a month ago shows I have bronchiectasis. He also said to find a new job! Shocking. So here's my thoughts...I've seen on this panel many comments about the benefits of exercise. After over a year of not really working out (yoga and spinning were my thing and I was very consistent for most of my adult life) did that keep this bronchiectasis diagnosis at bay. The doctor said it's kinda like the chicken and the egg thing. Which came first; the bronchiectasis that brings on the infections or the infection that brought on the bronchiectais! I'm just wondering if I hadn't stopped working out would I have not gotten to where I am? Not that I can change things but it might help me navigate my thoughts about working out again. I have to have surgery in 2 weeks and I'm wondering how concerned should I be about things. My doctor said not at all. I know this was super lengthy....I apologize. And I thank everyone that was willing to read to the end!

Recently diagnosed after ten years of “chronic bronchitis.” Prednisone and antibiotics knocked it out until last two years. My recent blood work shows compromised immune system, probably from me taking too much prednisone over last two years. Sputum being cultured now so we can see what we are dealing with...and hopefully get right antibiotic. On Symbicort twice daily, albuterol neb twice daily, Ibuprofen 800 mgs 4x daily, and trying to clear lungs...techniques that work much appreciated. Hard to sleep and breathless much of time with no fever and fairly good lung function tests. Had been fairly active till recently walking three miles per day and some weights till recently...too much coughing and hacking at gym.

Any suggestions would be appreciated and good luck to all in your fight with this condition!!

Greg

Recently diagnosed with BE and live in Cincinnati and Phoenix areas. Looking for the right physician who specializes in BE treatment and can let me know how to fight and manage this disease. Your help is much appreciated!

Thanks

Greg

I have hil rom mine i set on 14 for 20 min 2 times a day. Do not know if they have settings the same. I was told by a copd rep at the hospital in Sept for me to do levelalbuterol is generic xopenex then hypertonic 7% saline then do the vest. It does work. Before was just doing brovana but now I do that after the vest followed by spiriva then budesonide and Flovent is my schedule. Yup alot of meds.

Tis the season of travel. Do you have any tips that have made traveling easier while dealing with a chronic lung condition? Please share!

Because I have bronchiectasis I know I will always cough but this is tooooo much. I use nebulized 7% saline twice daily, use Symbicort twice a day and use albuterol inhaler several times a day. I take ranitidine twice daily for acid reflux. HELP, any ideas?

Hello Trusted Friends,

My lungs are colonized with MAC Avium, HIB, m. Abscessus has shown up a couple times, a little Aspergillus, and now my most recent culture grew out a fungus called Mucor. I have m. abscessus in my sinuses, too. The ID doctor explained it is a fungus that frequents airways, but it can also cause disease, so to be on the safe side, he ordered scans of my lungs & sinuses even though I just had them 3 mo. ago. I wondered if anyone else has/had mucormyocetes infection? Thanks, Keep the Faith!

I am going to be starting treatment for NTM and bronchiectasis very soon and I am very concerned about the side effects of the meds, particularly rifampin. Can anyone let me know how you dealt with the effects of discoloration of body fluids and how they might stain clothing? I don't want to ruin good clothing from perspiration. I've read plenty on the side effects of all the meds but nothing about how to avoid, if possible, the staining effects. Thanks so much

I have had Bronchiectasis for about 2 years. I started a prescription of Lexofloxacin for 7 days.

After three days feeling much better I quit coughing up mucous. My question is WHY?

I am happy about it, but I can't keep taking an antibiotic to feel good. I am on a 10 day vacation and didn't want to be sick the whole time.

All insight appreciated.

Thanks john

The COPD Foundation is excited to announce that we are hosting a discussion with Dr. Addrizzo-Harris, a pulmonologist and professor of medicine at NYU Langone Health, and Dariel, an NTM lung disease patient, to talk about living with NTM. Be sure to tune in to the COPD Foundation’s Facebook page on Thursday, February 28th at 1pm ET. This event is sponsored by Insmed Inc.

I think the drug called INS1007 to treat Bronchiectasis not linked to Cystic fibrosis,

Love to know anyone heard or is participating in the test?

Newbie here. Diagnosed last month with Bronchiectasis and severe Obstructive Sleep Apnea. I want to learn and I think many of you have already walked where I’m likely headed. First night last night on my CPAP machine. My Bronchiectasis not riled up right now but that could quickly change. I’d like to know how anyone coughing uncontrollably for a month or a few months due to Bronchiectasis can possibly wear a CPAP machine at night?

Eventually I’ll ask my pulmonologist’s advice on this. But the Pulmonologist told me a couple weeks ago that during my sleep study 148x per hour my airways closed or partially closed. He’s concerned my lungs are small....(note: didn’t know lungs came in small, medium and large). So, when I do see him next, he is not going to recommend I discontinue the CPAP, I’m quite sure.

Any of you have both of these conditions? What are you doing about your daily CPAP when the nonstop bad coughing comes to visit?

Hi - after treating MAI for a year with the big 3 (azithromycin, rifampin, ethambutol) with no improvement, we essentially doubled the dosage + used Amikacin via nebulizer (after a visit to National Jewish Health). Over a year later, the MAI was gone - hooray - and I went off the meds. Then, last year, I contracted pneumonia twice and, in December, the MAI reappeared. I'm back on the big 3 (not yet Amikacin) and will continue for a year. HOWEVER, at this point, I'm looking at alternatives (in addition to healthy eating, exercise, etc.). Any suggestions? People have recommended: vitamin D supplements, Bacteril, even colloidal silver! I would really welcome opinions as to whether any alternative approaches are useful. Thanks so much?

Hi, I am very newly diagnosed with Bronchiectatis, Mycobacterium Abscessus, and Aspergillus. I am feeling a little overwhelmed to say the least. I will be going to National Jewish Hospital in Denver for a second opinion sometime in the near future. My infectious disease dr has started me on Voriconazole. And I had a question about it. Has anyone had a negative reaction to this after taking it for several weeks? I am mainly experiencing nausea that will not go away I could also use some encouraging words. This is not the way I planned to start 2019!

My first culture results came back from December bronchoscopy. M. Fortuitum is growing. It is one of the so-called "fast growing" NTMs. Anyone else diagnosed with this one? Were you treated for it? I'm searching my references and don't find much specifically on treatment, except it is mentioned in this video from Dr. Huitt at National Jewish Health. https://youtu.be/Dw8hVJp1sJU

I'm 2 weeks out from a bronchoscopy and I know I have more weeks to wait until the NTM culture is done/read, but I think aspergillus doesn't take that long. I was thinking the last time I had it done it was about 2-3 weeks. Does anybody know? Thanks!

Hi, everyone --

Just joined today!

I've read this thread HTTPS://WWW.BRONCHIECTASISANDNTMINITIATIVE.ORG/BRO...

and would love to know how things are going with Kim. I would also love any input that members can offer for my situation.

My lung cancer is subsequent to my NTM (MAC). I've never been treated for the NTM, and don't yet know what treatment will be proposed for the cancer.

Here's what I distributed today to an NTM support group that I joined last year after attending a New York University (NYU) patient education program.

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I have significant NTM infection/damage, and have just been diagnosed with squamous cell carcinoma in a small lung mass, plus metastatic SCC in same-side hilar lymph nodes. It has not been staged yet.

David Kamelhar is my NYU pulmonologist, and Gaetane Michaud did the NYU bronchoscopy/biopsies.

I have an oncology team at Memorial Sloan Kettering (from a 2016 anal cancer), who will be comparing the current pathology slides with those from 2016 to determine whether the new tumor is primary or metastatic.

Has anyone else dealt with a lung tumor and NTM simultaneously? At NYU and/or MSK?

Thanks for any input!

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Katie Keating (KSmiles123) responded by referring me to this 360 site.

I'd be grateful for any relevant input.

Happy New Year to everyone!

I just learned I have sleep apnea and am being fitted with a CPAP. What do I need to know about using CPAP as it relates to my MAC and bronchiectasis?

It seems like disinfecting may be a problem. I don't think CPAP mask, tubing, etc can be boiled like my nebulizer and Aerobika. How do bronchiectasis patients sterilize their CPAP?

The CPAP has a humidifier which creates a mist. Will I have to buy Sterile Water from a Medical Supply so I don't introduce more bacteria into my lungs?

Thanks, Dana

I'm supposed to fly from SC to Denver on 12/20 for a week.

My ritual is to go to bed around 10PM. As soon as I lay down I cough up phlem for a few minutes and then I can sleep for a while-usually.

Then up at 7 and do my inhalers

Then yogurt and coffee.

At noon after lunch, I lay down and cough up more phlem and then sleep for an hour or two.

Then I get up and have a beer around 3. At 4 I have a bourbon and then one more.

I feel a little better-but not much.

I'm really worried about going to Denver in this condition!

Is this the best I can hope for??