Discussions

I have bed toppers that look like flower pots that u put under the wheels of your bed. They look like upside down flower pots. It will bring the bed up about 6 inches. Bed looks funny at first but you get used to it.

I'm looking forward to Memorial Day/Weekend. I recently spent some time on an Air Force base in Las Vegas and it was an excellent reminder of the holiday and the wonderful country we live in. So grateful for the men and women who have (and continue to) put their lives at risk to serve our country. This weekend will be full of reflection for me. Also hoping to get some rest and enjoy the beautiful weather. Interested in hearing how everyone else will spend their weekend. Please share in the comments below!

There has been some chatter about energy level and exercise, as well as breathlessness either while exercising or it holding you back from doing so at all. Does anyone have tips about finding your edge and managing your breathlessness?

This is information for a bronchoscopy.

http://www.healthline.com/health/bronchoscopy#Over...

Is there a healthy eating plan one should maintain with Bronchiectasis? Does anyone have any food tips for preventing or getting rid of mucus?

Exercise is better for all of us weather a lung disease or not. Us with the lung disease need to keep moving for our lungs. Most can maintain the lung volume by keeping exercising and if you do get sick the length of being sick maybe shorter than usual if you had not been exercising. As they say, "if u don't use it you loose it!!" It is been said the best exercise is the treadmill. If you can't do that anything can help as long as your moving. There are several exercises online to help those that can't due treadmills for some reason or not the chair exercises help. Can goods using for arm lifts help also. There are a lot of things around the house you can use, you don't need to go out and buy things.

Some people find in-person support groups very helpful. Does anyone have information on starting a support group?

I have recently 3/2016 been diagnosed with a fungus in my lungs in addition to NTM ongoing infection. Do any of you have a diagnosis of Aspergillis flavus? I am attempting to gather some information or locate someone who has experience with this fungus.

That is is not going to get any better. I have ppl keep asking are you better do you feel better? There is no getting better. That is the hard part. I have never had this before even with my asthma and emphysema I had no mucus or cough only with an infection.

My family just don't understand it at all. They think I can keep doing what I used to do and its hard even for myself to not be able to do what i used to do. For example the grands had a field and track today. There mom kept asking me if I was coming. I never missed one ever. Even my own kids. No I can't do it. Its along walk to the bleachers and also the wind was bad today. I don't know if they don't want to accept it and can't accept that I have gotten worse. It does cause anxiety for myself not being able to do what they want and what I used to do.

With summer around the corner, wondering what tips you have for dealing with increased humidity and heat?

Environmental factors play a big part in Bronchiectasis and NTM. How do your activities change with the seasons? What are some new activities/hobbies you are doing with more daylight and warmer weather?

I've heard doctors say that some patients need surgery to remove part of a lung even though the patient is already on treatment. Why is that?

Has anyone heard of Phage therapy to cure bronchiectasis? I read that the do this in the Republic of Georgia

Norma

Are there international programs offered to those with Bronchiectasis? I'm definitely interested to know what other countries are doing in terms of research and patient support!

Hi - I have had a history of bronchiectasis since 2005. The thing the doctors told me was to be careful if you catch a cold or flu as that can turn into pneumonia. Fast forward to fall of 2014, I had been having night sweats for years but now I felt like I was getting a fever all the time, that kind of light headed feeling, than the mucus increased. I went to the Dr. and was just told I have a bug, take some mucus meds. The low grade fever stayed, along with the extra mucus, back to the dr., this time some prednisone. The fevers went a bit higher and I started just sleeping a lot between coughing fits. Dr. number 3 gave me a script for some super cough meds and ceftin antibiotics. I demanded a chest X-ray due to wanting to make sure pneumonia was not setting in, Dr. said if you are not better in a week than we will X-ray, I told him no we need to do it now!. So I got the X-ray and yes I had pneumonia in both lungs. I was sent for some blood work which said I tested positive for mycoplasma pneumonia. The ceftin seemed to be helping and I started feeling better. Even the cough lessened. I was telling people I have coughed for 10 years and now it is like a bad memory, why hadn't I taken ceftin before this, it is like a miracle. 7 days after I finished the ceftin all the symptoms returned. This was repeated 5 more times when I said this is crazy and found the most amazing ID doctor. Her first ? is why are you here, I told her I was tired of being so sick.....she took my history did an exam ordered some test and said " I believe you have MAC" - followed up with pulmonary Dr., had bronchoscopy and that confirmed the NTM MAI - Than it was the wait for what meds. to take. I continued to take the ceftin until the big 3 were chosen. This all took from Nov. 2014 till May 13th 2015 - "1 year ago today" - I have had 2 neg cultures for MAI, one did show aspergillus which i am not being treated for as It is probably colonized and not causing any further problems. - During this year of treatment I did have an episode of coughing up blood, but for the fast action of my pulmonary Dr. within a week I had another bronchoscopy and a PICC line to treat a very bad pseudomonas infection. This has been a roller coaster of a ride with leaning how to cope with this physically and mentally. I am still learning.......

Norma

I know a couple of patients interested in joining the Bronchiectasis and NTM Research Registry - How can they join?

How does someone know they are experiencing an exacerbation?

What is the Bronchiectasis and NTM Research Registry? Is it the same as this online community? Is it something I should be a part of?

As a novice to these diseases, I am curious about the connection, if any, between Bronchiectasis and NTM. Does anyone have information on this?

I been wondering about these two you can neb gentomicin and tobramycin I am asking my pulmo when I see him in June. Was told that you have to prove a bacteria by sputum is that true do you know for sure? There is a study out now that they are working on inhaled antibiotics for bronchiectasis. I keep watching for anything for this lung disease. I am taking zpak 3 times a week now but its not clearing up but keeping it stable I guess.

Does anyone know what causes Bronchiectasis? Also interested in hearing diagnosis experiences (i.e. did your doctor tell you how you got Bronchiectasis?) if anyone is willing to share.

Thanks!

What are the most common medications currently being used to treat NTM, and the side effects associated with each one.

Recently had to stop iv amikacin due to hearing loss. Still on rifampin and azythromycin. Waiting for bedaquilline which was approved by pharmaceutical co., Sirturo.

Any side effects, efficacy of drug?

I am interested in knowing how common Bronchiectasis is. Does anyone have any statistics associated with Bronchiectasis?

I have been diagnosed with Mycobacterium abcessus and Mycobacterium chelanae. Has anyone ever been cured from this? Does anyone know what life expectancy is? I am only 51 years old.