Discussions

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?

Bob I tried to get my pulmo to give me the Tobramycin but all he said its expensive and your insurance wont pay for it so he gave me zpak to take 3 times a week.

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.

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.