Discussions

This is my daily routine. What is yours?

Upon waking.......... Coughing and expelling mucous/phlegm for 40 minutes (average) in order to clear my airway passages. On bad days I can go for 60 minutes and my wife will help me by doing persuasion treatments on my back to help loosen the build up. I take 10 ml of gaufenesin liquid each morning to help loosen the build up.

During the day........... Constant clearing of the throat and expelling mucous on tissues. I have to have tissues near me or with me at all times so that I do not suppress the mucous. I use about 50 to 75 tissues each day. I buy tissue that is very cheap and by the case. I find that the more expensive ones simply have a whole lot more paper dust in them to make them soft and breathing that dust is no good for anyone.

At bed time......... Another dose of gaufenesin and then while reading or watching TV I usually cough up mucous for at least 20 minutes. I think it has something to do with what is referred to as postural drainage, meaning for me the change to a laying position from standing causes the coughing to begin. I usually go through about 10 to 15 tissues while settling down to go to sleep.

While there is a whole bunch more I could add, I think you get the picture. I've had bronchiectasis diagnosed since 1979 and as the years have gone by it has indeed got worse. I am retired now (67 years old), but it never cramped my style during my working years. (Other than having so many people ask if I have a cold so often.)

I wonder what others days/nights are like? I hope some of you will share.

Thanks, and God Bless.

My doctor at National Jewish prescribed a daily routine of inhaling a 7% saline solution using an aerobika flutter device and a nebulizer in order to clear my lungs of mucus. I was wondering if anyone else was doing this and how it was affecting them.

After taking Nexium (PPI that blocks all acid) for over 3 years, due to problems with the antibiotics for NTM, I read that PPI's cause bacteria to go into the lungs. Don't need more of that! So now I am going cold turkey, with no Nexium for the past 3 weeks. It is not easy. I have always taken probiotics, but the indigestion is still severe without the Nexium. I take generic antacids that help a little, but nothing like the PPI. Anyone have any experience with this or recommendation? I will ask my pulmo doc and infectious disease doc for advice. PPI's are for short term use and could cause other harmful side effects, also, but they really help with GERD. I no longer take antibiotics at all because of side effects and lack of improvement in my NTM infection. Any ideas would be appreciated.

Good morning to all - I am very interested in learning about where people are living at time of diagnosis of MYCOBACTERIA infection and what type of NTM - This ? stems from trying to decide a possible better location to live - I myself live in Sebastian, Fl. and was told by my Dr. that NTM is very high in this area, also through internet articles (Medicare tracking) I have read the same about Fl. - Thanks for any input anyone would like to share

Norma

If you click on What is Bronchiectasis, you will see our first educational material created for you!

Next on the agenda is to develop a 1s, 2s and 3s of Bronchiectasis. This will be a booklet modeled after the 1s, 2s and 3s of COPD. It will be available to patients at no cost and comes in a dual sided booklet. English on one side and Spanish on the other side.

This new booklet on bronchiectasis should be completed by the end of 2016.

What would you love to see more of on BronchandNTM360social? As far as resources, blog posts, information-are you more interested in Quality of Life information or medical knowledge? A blend of both? Let us know! This site is for you and we want it to be everything you want it to be.

I've read that some probiotics are better than others for dealing with side effects from antibiotics. What have your doctors recommended?

Have you noticed much improvement in side effects when you take a probiotic?

Tomorrow's the day I see my doc to discuss NTM treatment.

On Thursday my colleague Kristen and I had the opportunity to speak with some legislative staff regarding access to health care services. We were there to represent the voice of the patient and family perspective. We discussed the importance of Durable Medical Equipment (DME) services and how they truly impact the patients’ lives and the negative impact additional reductions in DME reimbursement would have on those with COPD and other lung diseases, especially in rural areas. We attempted to expose the link between the reduction of access and negative health outcomes. We know that to those of you who require DME’s, it is not just a matter of frustration or a source of contention, but it could be the nexus to a healthier existence.

We were grateful for this opportunity and fortunate to have other knowledgeable individuals with us that were able to speak to the broader reaches of this bill.

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?

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!

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

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!

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.

I have had asthma most my life then in 97 I was termed copd. So its emphysema, chronic bronchitis, bronchiectasis and mild PH. I was diagnosed with bronchiectasis in 2015 by ct scan. I never coughed or had mucus unless infection till this happened. Last year March ended up in hospital with a exacerbation and never been the same since. In Oct 15 thru February one infection after another. Antibiotic and pred burst every month. Missing half of my pulmonary rehab each of those months. Asking my pulmo who is over 100 miles away about taking zpak 3 days a week he said no. Well after having so much trouble he finally agreed to it. So I take zpak 3 days a week so far so good off pred totally. I do 7% saline in neb or mycomyst 20 in neb if that dont work but the saline usually does it. Also he doubled my daily vials of pulmicort rather I have steroids that way than pred all the time. I am doing ok I have trouble its not easy but keep plugging along. I go to pulmonary rehab 3 days a week some days are good some are not. Been 4yrs this May since I started. I was wondering about tobramycin for bronchiectasis. Its used for CF but can be used for bronchiectasis. Do you have to prove the bacteria before the pulmo does ok this to use? I also seen a study on the floxin made into a inhaler for bronchiectasis. Its in the works yet. Had to add a nodule we are watching not caner yet just watching. Most of the nodules are not cancer.