Discussions

Recently we were told by our daughter's geneticist, that she was almost positive she had Opitz G/BBB disease. She said Bronchiectasis, as well as laryngeal cleft and autism are symptoms of the rare genetic disease. We are currently awaiting her test results. Has anyone else heard of this disease or been diagnosed with Opitz G/BBB disease and Bronchiectasis?

I know I asked this a while back, but has anyone heard anything about 3rd World Bronchiectasis Conference in DC July 12-14th? We are planning to drive from TX with all 3 kiddos and both my parents in their rv and need to make our reservations for our stops. As well as a hotel room in DC for the conference. Basically trying to turn the conference into a reason for a fun but educational road trip for our 2 older children.

In reference to the conference, are you required to registered to attend? Is there a maximum attendance allowed? Is there a syllabus or outline of the conference anywhere online for us to view? Where can we register and get any and all information in regards to this year's World Bronchiectasis Conference?

Sorry to be a broken record, and continuing to ask these questions.....we have just been try to plan this trip to DC for over a year. We would hate to miss anything. Thank you in advance for any information!!!

Had to add a picture just to make everyone smile!

Adverse effects of the 3 major NTM antibiotics.

My physician orders high doses of Prednisone when I have an exacerbation Is this recommended?

How should GERD be diagnosed especially if it may be silent? And what kind of treatment is there? i.e. how aggressive should one be in persuing treatment in an effort to eradicate chronic NTM not eliminated by multiple courses of antibiotics

I have been prescribed cough pills by my pulmonologist, but I don't take them, thinking that it's better to get the mucous up and out than let it be a breeding ground for infection. But I pretty much cough all day long now, and would like some relief. What is your experience with cough pills?

My most frequent exacerbations show up as pleuritic pain, sometimes accompanied by extra lung congestion, sometimes accompanied by fever. Usually 1 or 2 days of extra tiredness. I generally rest, apply heat, take Advil, maybe extra Mucinex. But I just wonder if this is typical or more unusual to get pleurisy in this situation.

I'm not sure if this is caused by bronchiectasis or NTM, or maybe both have the potential to cause it. I finished treatment for NTM last summer, but I realize it can return.

Thanks for any feedback.

Does anyone know the where, when and how to register for the 2018 conference? I did see it was going to be in Washington, D.C. in July 2018, but have not been able to confirm dates. I also cannot find how to register? My family is really wanting to attend, and do not want to miss the registration details. We are also needing to save up for the trip from TX to D.C. and the sooner the better. If anyone has any information in regards to this please let me know!!! How your day is treating you well, God bless.

I was diagnosed in the 80's, and have been in the hospital for flare ups, more times than I can count. I almost never feel well, but continue to carry on as tho I am . I think my question might be: How do others with this disease deal with the copious amounts of phlegm they constantly cough up, in public? Like... at the gym?? My pulmonologist feels that exercise is vital.

Hi!!!

First, Merry Christmas and Happy New year!

Does anyone with bronchiectasis use supplements and/or essential oils? If so, why, how and when?

I've used supplements for many years and have used essential oils sporadically, and am using EOs more now. I know supplements help boost my health and am beginning to use EOs more as they seem to help my body fight various issues.

Blessings!

Hi. I'm posting my very first question on this blog.

My family member has been just diagnosed with Mycobacterium "Abscessus" Complex by a pulmonologist. From what I've read, I understand that it is extremely important to find an experienced NTM expert who can create an individualized treatment plan.

Can anyone recommend any experienced NTM expert in Lexington, Kentucky? If necessary, I would not mind taking my family member to a good NTM expert in a different state, so any recommendation of a doctor would be appreciated.

Thank you.

My 30 year daughter has had a positive acid stain test. The culture is now growing to determine the species. She's had asthma since she was 2 years old. She's a newly graduated pharmacist and is so scared. I really don't know what to expect next ..?

Does anyone have any information on the 2018 World Conference? Like location, dates, when registration will open up, and where we might go to register(website)? We really would like to attend but need details now so we can save up for the trip.

How do you find it it easiest for you to set and make progress toward your goals? Do you write them down? Where do you post them to remind yourself? Would love to learn from your approaches.

I am considering getting the Afflovest. Anyone using it and does it make any difference? It is not cheap.

So far for me the most effective way to clear the mucus is the saline solution 7% and biking on a bike trainer indoors for 30/40 minutes.

Patients as Partners: Using the "My COPD Action Plan” for Effective COPD Management

A webinar for health care professionals and those who have been diagnosed with COPD

Free of charge

Tuesday, November 7, 2017 4:00pm – 5:00pm EST

The “My COPD Action Plan” empowers individuals with COPD to be active participants in their COPD management, helping them be more likely to:

• Receive prompt treatment
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• Avoid hospital admissions

• COPD Action Plans Really Work! How to Get Physicians to Use Them
• Features of the “My COPD Action Plan” and How to get the Most Out of It
• How a COPD Action Plan Helps me Stay Healthy

Dr. Byron Thomashow, Pulmonary Disease Medicine, New York-Presbyterian Hospital

Jane Martin, BA, LRT, CRT, Assistant Director of Education, COPD Foundation

Caroline Gainer, individual with COPD

Register for the “Patients as Partners: Using the My COPD Action Plan” webinar

Hi, all--

Has anyone else experienced delayed side effects from Daliresp? After 4 months on Daliresp I experienced a new and most egregious side effect, and my doctor took me off the med. I had some side effects at the beginning, but they either subsided or I could live with them. I had been wondering if Daliresp had "done its job" and if it was time to stop it since I am doing much better (and I'm not thrilled about taking a biologic med). I guess I will see. Fortunately, my bronchiectasis was caught much earlier than most and I don't have NTM.

Has anyone gone through pulmonary rehab and did it help? I am wondering if I should ask about this treatment.

Hi! Has anyone with a history of mastectomy with gel implant reconstruction been using a percussion vest, or know anything about the safety to the implants of such use? Any idea where to find case reports of problems or studies showing safety? Thank you!!!

Is it possible to get Disability assistance through the government due to NTM and /or Bronchiectasis?

Has anyone gone through this process?

I'm newly diagnosed with Bronchiectasis and MAI. Apparently I have only two brands of nebulizers available in my area that my insurance will cover: Drive (compact or MedNeb I think) and Phillips Respironics Innospire Mini. Does anyone know which is the best?

I will appreciate any advice. Thanks!

Dana

Does your respiratory diagnosis create challenges in your daily tasks? Have you found helpful solutions that you can share?

Do any of you use Health Apps to manage your disease? Here is an interesting article from the Wall Street Journal about how certain apps help in the connection between health care professionals and patients. Any thoughts on this?

https://www.wsj.com/articles/how-apps-can-help-man...

I was diagnosed with pseudomonas a few months ago & had a hard time getting it resolved. They had to change antibiotics a few times.

Wonder what foods may or may not affect my condition. Others with experience? Thanks for your responses.

I was diagnosed with this NTM in 2014, and recently my pulmonary doctor has told me he sees progression of growth in my CT's of suspect new activity of the disease. I thought we had beat it back. Now do I start all over? Doing the three tests AFB again. But the first round of treatment nearly killed me. I'm scared. Is this what others face?