Discussions

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!

Yes, so many with chronic disorders face these challenges. I feel that you learn over time how to face saying "no" when you are truly unable to function and attend an event. True friends, family will get better insight of what you are dealing with over time.

In the interim, try to find diversion all activities to do while stuck at home that match your energy levels. I will write more very soon.

Rich the acapella can be cleaned. Its in this video a ways..

https://www.google.com/search?rlz=1C1NDCM_enUS783U...

When you got your aerobika there was a booklet with it and that show how to hook aerobika and the neb together if that is what you want to do. Here is some information for you.

https://www.nationaljewish.org/treatment-programs/...

Ok guys we are going back to pulmonologist Monday for a follow up for our LO'S pneumonia. When we were told she had Bronchiectasis a few months back our pulmonologist never told us the severity, lung involvement(both or one lobe on specific), or if it was cylindrical, varicose or cystic. Basically just said she had it and ordered bronchial lavage, sweat test, ciliary testing and now, only because I insisted, a CFTR and full pulmonary genetic panel. So I guess what I am asking is, is there a check list or questionnaire anyone has or knows where I can get one for Monday? I just don't know what all I should be asking or needing to be informed of. I know this may seem dumb to ask, but with my LO being so young and none of the pulmonologist we have spoken to seem to have seen anyone her age with bronchiectasis I want to be as thorough as possible!!!! Please help! TIA!

https://www.statnews.com/2016/02/08/fda-crackdown-stem-cell-clinics/

There cracking down on so called stem cell clinics. All they do is take your money and you get no help and possible death. We did have a lady in our e-mail support group that went to Florida for stem cell she spent alot of money and received no help and passed away.

My 16 month old daughter was recently diagnosed with bronchiectasis, and I am kind of at a loss as to what this disease looks like? And if anyone else has a child, or was themselves, diagnosed at such a young age. Thank you in advance for any and all comments!

My bronchiectasis and MAC was diagnosed in Oct 2015. for 20 years prior, and ever since, I have had a strenuous, every day and night cough that I take numerous medicines and inhalers to try to control. Does anyone else have this much trouble with constant coughing?

Hi All, I have had bronciatais all my life and I am full time working, I am finding it difficult in work to clear my lungs so I am suppressing my cough cause it sounds horrendous. I am very self conscious of going into the toilet I ususlly wait until everyone is gone so I can clear my lungs. Can anyone relate to this? Or have anyone suggestions on managing this condition while working?

Many thanks

It is with utmost sadness that we must share with you that COPD Foundation Founder, John W. Walsh, passed away surrounded by his loving family.

We owe John a tremendous debt for his enduring commitment to curing COPD and bettering the lives of those affected. Please visit: https://www.copdfoundation.org/About-Us/Press-Room/Press-Releases.aspx for our formal announcement.

Hi everyone. I found this question on an online bronchiectasis forum that I follow and I would like to know your experience about "when to start antibiotic".

When do you start antibiotics? How do you know if you have exacerbation? What is the antibiotic that you use during exacerbation?

Have a good day today :)