Discussions

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

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• 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?

Hi everyone,

Has anyone tried using masks when they travel to minimize risk of exposure to illness? What have you tried -- and have they worked for you?

Thanks!

I do hypertonic saline 7% and it sure has helped me. Also NAC a supplement pulmo do recommend be sure to ask your dr first. My pulmo told me to double my dose I was doing 600 mg for the antitoxin affect till I got bronchiectasis.

http://www.webmd.com/vitamins-supplements/ingredie...

After being told I have bronchiectasis, my pulmonologist informed me that my eosinophil levels were extremely high, 179 was the count, and that it was the main cause of my asthma. Has anyone else experienced this?

This is a question from participant Elaine.

After having severe H1N1 swine flu in 2009, followed by another chest infection within 10 days - my health and lifestyle changed. My main continuing issues are -

persistent throat clearing and occasional cough

SOB on exertion

constant extra tiredness

humidity is unbearable - mucus cough, feel like I can't breathe

cough around irritants - ie smoke

After years of treatment for asthma like symptoms [with no effect]and other conditions [with no effect], only through my persistence I have been diagnosed with Adult aquired tracheomalasia [mild]after bronchoscopy and NCF Bronchiectasis [mild] after scans.

My question is - Is there anyone in the world like me with ongoing symptoms post influenza?????

Thankyou

Elaine from Australia

But

As most of you know our now almost 19 month old has non-cf cystic Bronchiectasis. We have been trying to allow her to experience as many "Normal" activities as possible. One of these being swimming. See, we live in Texas and basically to survive a summer down here means being in the water. Sailor absolutely loves the water, which I love but also scares the crap out of me because she has zero fear of it. If she sees water she will take off full speed and try and jump in. We have tried floats(She is like the hulk and can pull herself out), floaties(She just puts her face directly into the water and tries to drink it). Our problem is her severe dysphagia and chronic aspiration.

So in light of her love of the water and pur concerns for her health, we contacted one of those baby water survival companies. These companies teach infants ranging in age from 6 months to 4 years of age, how to survive if they fall into water fully clothed. I was really hoping they could help her. I received a very blunt message back saying," Your daughter needs to stay away from water and as a parent I should know that. And they could not and would not help her"! I was so hurt and angry by their response that I broke down in tears. Has anyone else had to deal with something like this?

Hi all -- how do you approach expressing your needs re: your illness with friends and family? For example, if you need them to stay home when they have a cold so you can avoid infection or you would prefer to stay inside rather than engage in an outdoor activity. What seems to work in communicating what is best for you?

I sent samples of the bio film in my showerhead to the university study conducted a couple of years ago. Did anyone here participate? Did you get your results? I've never heard back and now cannot even remember who did the study to follow up. Any information would be appreciaited. I'd love to know what bacteria they found. They said they would tell us. Thanks!