Discussions

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.

Every month I get a CBC, plus kidney and liver function checks, ordered by my infectious disease doc, and I assume you all do too. For those of you who have been treated for 2 or 3 or more years, did the monthly lab work continue throughout treatment?

I needed to quit my visual art high school teaching job of 33 years due to my Bronchiectasis. I would frequently have bronchospasm, coughing for several minutes with difficulty breathing, sweats while trying to teach 5 classes per day of 40 students per class. The physical difficulties of lifting, bending over, talking all day were just too much. My fatigue also lead to many exacerbations of infection, antibiotics, and a PIC line in my arm while I taught school for 3 weeks. I needed to quit. Now, I am on the second phase of applying for disability with an appointed attorney. Has anyone else done this? I appreciate any advice. Kel

I have a rare eye disease and found that I needed to be with a doctor who specialized in the disease and did lots of transplants a week. The website I was on provided a list of doctors and also the experience people had with them. Is the same true if one has been diagnosed with bronchiectasis? Can a regular pulmonologist handle treatment?

I may have been misdiagnosed by the scan doctor and two pulmonologists. I need to know if this is possible.

If anyone has any tips or recommendations, I would love to hear them!

I am looking into various types of Air Purifiers. Do you have a favorite? There are so many choices...I would love to hear your experiences, good and bad!

I am curious if any one affected by Bronchiectasis has lost their sense of smell or ability to taste? If so, was it temporary? ...

Does anyone have difficulty with sleep, both getting to sleep and staying asleep through the night, because of your Bronchiectasis and/or NTM? If so, do you have any tips to getting a better nights rest?

I'm just getting over a cold that had me home for a few days. (I think) I'm really observant about washing my hands, etc. but I seem to get a couple colds a year. What steps do you take to prevent colds and other resp infections?

I started NTM treatment with the "big 3" but had to stop the Ethambutol in the first month because my hands and feet started getting numb. I understand the damage is often temporary, but after 30+ days off the Ethambutol, they haven't gotten better. It's not painful, just annoying and uncomfortable. For example, when my hands get cold now, I get a burning sensation.

Has anyone else experience this and did the sensations go back to normal after some time off the Ethambutol? How long did it take?

What kind of Bronchiectasis/NTM educational efforts/programs would be useful to you?

Yesterday was Falls Prevention Awareness Day -- how do you prevent falls in your own life?

You may be interested in this post on COPD and falls posted this week: https://www.copdfoundation.org/Praxis/Community/Bl...

Hi - found out recently that there is a connection with NTM MAI and living with birds - has anyone been told this by a doctor, I saw a new pcp and he was stunned to learn that I was living in a house with a bird (amazon) - I was stunned that no one ever told me there was a connection - this is a very useful bit of info that should be explained to patients that are first diagnosed with a lung disease - I am also amazed that when diagnosed with bronchiectasis that doctors do not advise patients about all the future can hold, no one ever told me about NTM's until I had it.......There seems to be a big gap in Doctors relaying info about precautions to take in life while living with lung disease ........ norma......

ps. sounds like a project for a booklet for Doctors to hand out

my drs have differing options on how long to take the big 3 - i so want to stop the meds but am not sure who is giving me the best advice.....so i was wondering about everyone else and how long you took the meds before you were able to stop - norma

I was wondering what germs many of you have, if you happen to know? I was reviewing my medical records in preparation for a visit to my pulmonologist next Tuesday and was reminded that the last time I was sputum tested, I had these three germs. I think the 3rd one is normal, but the other two are culprits.

2+ Stenotrophomonas maltophilia
2+ Staphylococcus aureus
2+ Oral Flora

On one of my asthma support groups a 2 yr old was diagnosed I never heard of one that young.