Delia

Delia

 Hi all! We are working closely with an industry partner to learn more about patient and caregiver perspectives on and experiences with vest therapy. As most of you likely know, vest therapy involves the use of a respiratory vest that delivers rapidly repeating pulses of air to the vest, which gently squeezes and releases the chest wall to create an oscillation of air that works to clear mucus from the lungs. Below is a link to a short survey for those of you interested in sharing your perspectives and experiences. Thanks in advance!

https://www.surveymonkey.com/r/BYW68KL

1 month ago

Brandon

Brandon voted on My Journey with Lung Disease: Initial Diagnosis

Gave a thumbs up for a blog post!

8 minutes ago

Gretchen

Gretchenadded a new article My Journey with Lung Disease: Initial Diagnosis

Written by patient and advocate John Torrence

We very much appreciate that a fellow BronchandNTM360social community member and NTM patient is willing to share his journey with us. He will take us through his initial symptoms, diagnosis, identification of a clear family connection, his experience at a well-known health center and what the future may hold. This is the first blog in a series where John will take us through his experiences with lung disease.

I...

1 hour ago

Gretchen

Gretchenvoted on My Journey with Lung Disease: Initial Diagnosis

Gave a thumbs up for a blog post!

1 hour ago

ksuzanne

ksuzanneanswered the question Anyone treated with augmentin antibiotic?

Thanks Ksmiles123, I have asked before and it is like talking to a brick wall. I will probably have to get a referral with infectious disease doc. :/
Ksmiles123Kandy also answered the question Ksmiles123and 1 other also answered the question

13 hours ago

Ksmiles123

Ksmiles123answered the question treatments

Lv o, Hello! The pamphlet below may assist you with some answers re: meds. Katie https://www.ntminfo.org/insight-patient-pamphlet/
Lvo also answered the question Lvo also answered the question

16 hours ago

Ksmiles123

Ksmiles123answered the question Top Centers for MAI Treatment?

Hello! Dr Addrizzio or Dr Kamelhar at NYU are well experienced w NTM. The staff at NJC are all equipped to deal w NTM; they work as a team to figure out the more challenging cases
suzeDelia also answered the question suzeand 1 other also answered the question

16 hours ago

jj

jj

I am sick again for the 6th time in one year.  My exacerbations last from 8 days to 1 month to 5 months.  I was an avid pickle ball player and gardener and gradually my ability to participate in aerobic activity has diminished to a point that I am just walking.  If I do participate in an activity I cough so badly that I frighten everyone to death or make them afraid I am contagious.  So I have decided to do aerobic activity at home where I won't disturb anyone else.  Parties have become very difficult for me.  Talking and breathing exhausts me.  I was initially diagnosed at the Mayo Clinic in 2012.  I have just become symptomatic the last three years.  My last CT scan indicated the infection and bronchiectasis has spread to the lower lobe of my right lung.  Now the entire right lung is involved.  I am awaiting the results of new sputum tests and when the Dr. knows what bugs I have now, he will refer me to Jewish Hospital.   I also have gerd and it happens at night with the bed elevated and even as I walk across a room.  I'm not sure what to expect from Jewish because previously my bacteria were extremely antibiotic resistant.  I do 4 nebulizer treatments 2 with ipatropium/albuterol and 2 with acetylcystine and I use a Breo Elliptica once daily.   I also use the aerobic.  I am discourged at my loss of function and the ease that I get sick.

1 day ago

  • NewestOldestClick to View All Comments9 comment(s)
  • Ksmiles123JJ,
    Hello! Do you have a timeframe for National Jewish at this point in time?16 hours ago
  • Ksmiles123Linda,
    Hello!   I am so sorry to read about your reoccurrences.  Are you practicing good Infection Control measures?  It is so very important this time of the year.  
    Are you taking probiotics?
    I have had many pneumonia’s and mac ; fortunately, I am doing a much better job these days to avoid reoccurrences.16 hours ago
  • ksuzanneYes, I can feel short of breath even with normal levels. I've learned that it is due to air trapping and co2 levels. My lung function test showed this as well.14 hours ago
Tracer

Tracerasked the question: treatments

Just received message from pulmonologist that they want to start treatment for MAI as it MAY be dominant cause of radiographic findings. Says treatment will not affect ability to later treat chelonae abscessus.......anyone else have this happen?

1 day ago

Myrnie

Myrnie

Sick today....flulike.  Using nebulizer and in courage machine and vwst

1 day ago

  • NewestOldest
  • Ksmiles123Hello! I hope that your symptoms pass quickly.   Bad flu floating around.16 hours ago
  • GretchenI hope you start feeling better Myrnie! Yes, I know a lot of people that have been down with the flu. I hope you can rest and the nebulizer is helping to relieve some of the discomfort. 1 hour ago
Kandy

Kandyanswered the question Who uses Mucomyst? Please share experiences, thanks.

Mucinex does nothing for me The mucomyst was used many years ago and this year was prescribed it again. Take NAC supplements when remember to.
ksuzanneKsmiles123 also answered the question ksuzanneand 1 other also answered the question

2 days ago

ksuzanne

ksuzanne

Hi to all the Zebra's here! It is late so I am just posting a quickie to say thanks for the responses to my questions.I'm going back to the posts individually to reply but don't expect to "see" anyone til morning.
I didn't feel too bad today, which is a good thing, because suddenly I became very busy. I have been selling some things online, and as some of you may know, this requires sitting around a lot staring at the computer or phone until, BAM! suddenly the messenger window and emails light up. This means I'm doing 20 things at once so I can meet one person with their item, then get to the post office to mail the other items before they close--and I am not good at multi-tasking like I once was.  During this sudden flurry of activity, I had to be mindful of my lungs and my tendency toward exercise induced asthma so I really had to pace myself and not give in to the adrenalin rush on this prednisone. I think I did a pretty good job as there were only a few wheezes here and there, and standing in line at the post office and drug store gave me some time to recover.


With that, hope everyone had an equally good day and you are all breathing easy tonight⛺
Kerie

2 days ago

  • GretchenHey Zebra! You are very welcome! Mindfulness is important-if things can wait, let them wait! Make sure you are taking care of you first! Hope you had a great weekend!1 hour ago
Gretchen

Gretchenanswered the question Anyone using PALL Med filters on shower or taps?

Loopy, here is some information that may be helpful with the filters: When considering the use of a Pall QPoint point-of-use filter (this is the 62 day version) please note that following: The shower filter is easiest to install at the end of a hose. …
Ksmiles123KKLoopy also answered the question Ksmiles123and 2 others also answered the question

3 days ago

Kandy

Kandyanswered the question anyone on nebulized mucomyst?

I have been the 20% 1 or 2 times a day. I do alternate with 7% sodium chloride. Both are good.

3 days ago

ksuzanne

ksuzanneasked the question: Anyone treated with augmentin antibiotic?

Anyone found it to be helpful? I'm done with it but really didn't seem to help other than mucus is clear now. Shortly after taking my dose I seemed to get more throat and sinus inflammation. My doc prescribed this along with pred for a sinus infection …

3 days ago

ksuzanne

ksuzanneasked the question: anyone on nebulized mucomyst?

Wondering if anyone nebs mucomyst and if you think it helps. I feel it makes me more sob. Dehydration?

3 days ago

ksuzanne

ksuzanne

Hi all, Third time I've tried to post an intro.--guess I have fat fingers.  been meaning to come over from copd 360 for a while.  Bronchiectasis was reported on my ct scan this past spring. I've been in continuous"COPD" exacerbation since may 2018.  I see pcp, pulmo, allergist, and gastro.  Had a endoscopy and dx gerd, esophagitis.  A bout of relfux may have triggered this whole scenero.  I've been treated for lung infections at least every month to every other month.  When I mention sputum cultures to rule out mac, pseudo m's aspergillosis i'm told to not look for zebras and that I will have to have a broncoscopy to rule out.  last appt with pcp i had lingering sinus pain and pressure and wheezing in my upper airway after a round of pred and antibiotics for pnuemonia.  The doc said I didnt look sick but reminded me I have COPD and that I'm depressed and have anxiety. He wasn't going to further treat the respitory problems with another antibiotic then wrote me a scrip for an antidepressant.  I took it as it may come in handy, but being on pred all the time im sure has caused a lot of drug induced anxiety.  I would like to not be depressed about my situation, but adding a med that takes a while to work and will complicate the diagnostic picture with side effects--especially dehydration, is not the route I want to take for the moment.  Oh, yes, I have high eosinophils from time to time depending on whether im on pred or not
I know from all the information available from the 360 sites that dx and a good treatemnt plan for this condition can be hard to come by. I live in a small rural town but the docs are under the umbrella of the cleveland clinic. Geez, give me a break, lol,  very frustrating as I know my lungs are being damaged the more this goes on! Anyway thanks for reading

3 days ago

  • NewestOldestClick to View All Comments4 comment(s)
  • KristenSo glad you came here from COPD360social, ksuzanne! Yes, I wonder given how advanced Cleveland Clinic is if they have a telemedicine arm so if you can't make it to their location, you can still be seen by a pulmonologist there via video or phone. 


    I find it frustrating when HCPs blame symptoms they cannot explain on depression or anxiety. Certainly they could be related, but often they are not and attributing these to our mental health is used as a substitute for getting to a core physical issue.3 days ago
  • LvoKsuzanne, just read your intro!  It is really scary going through what we are going through.  I Wanted to respond to a couple things:
    1) as I believe you saw in my intro, like you, I have repeated lung issues ever couple of months, seeming now to be almost continuous. 
    2) regarding looking for zebras - like me, you ARE a zebra.  You have symptoms that doctors don’t see and don’t know what to do about.  They should be investigating every possible thing that might be causing you to be a zebra, test for it and diagnose or rule out.  I’d recommend getting a second opinion if you haven’t already done that and change drs to someone who cares and will work with you.  Or if you believe your current dr will work with you, then push him for what you need.
    3) I have a pulmonologist that I really trust now.  He was my second opinion and so much more compassionate and responsive than the first guy who was arrogant, condescending and unresponsive.  Once the first guy diagnosed me with Mac, he wanted to send me to infectious disease dept and wash his hands of me. 
    4) my first dr performed a bronchoscopy which resulted in Mac diagnosis.  But my new dr prefers to do less invasive things first.  A few months ago he had me do a sputum culture and it worked fine to show I have Mac. I don’t understand why your doctor says it has to be done with a bronchoscopy?
    5)  As a note, 2 days after the first guy did my bronchoscopy, I ended up in the Er with severe chest pains on my left side - turned out the bronchoscopy caused pneumonia in my left lung (the good lung).  All procedures pose risk, but what made me really mad and ask for a 2nd opinion is that the doctor didn’t respond to my emails or calls to the office for a whole week... and even then, he just had an assistant call me.  That’s what drove me to get a second opinion.
    6) I’m really mad that your doctor gave you depression medicine.  I a ...2 days ago
  • ksuzanneThanks so much for the suggestions and support. It really helps with things to put on my to do list and stick with it.  It has taken me a while to get all the ducks in a row as I'm constantly getting hit with acute symptoms which need immediate attention.  I probably shoot myself in the foot by not going to the er. I was there twice last year and they just gave me neb treatments and steroids and sent me home. xrays then were normal other than inflated lungs some emphysema and my lung nodule. I was hoping this summer to get a lot done as far as ruling out mac etc.  But they found some liver nodules on ct scan so the pulmonologist had me running around with mri's gastroenterology and such.


    Lvo​ funny you should mention the bronchoscopy, I was feeling a little better, almost no symptoms for a week up until my endoscopy. The day after I got the worst sore throat, couldn't swallow right for a week, and all my other symptoms came back full force, plus I had been taking nystatin for thrush from the inhaler, so after the endoscopy it came back with a vengence. So, I understand about your experience with the bronchoscopy.  I'm so sorry that that happened to you, and that is what I want to avoid, an invasive procedure when other tests are available.  In the morning I'll compare notes with you on the other things as I have been reading some interesting things about imaging studies and the differing natures of certain lung infiltrates.

    At this point,  you guys have given me incentive to call the ask a nurse and yes, we do have a telemedicine line,  at least I could get some suggestions from a doc on there on where I could go for a second opinion that is in my plan.2 days ago
Lvo

Lvo

Hi everyone - new to this site!  For the last 8 years when I get cold symptoms, they turn into pneumonia.  I  was diagnosed with “minor” Bronchiectasis and MAC 2 years ago, but my doctor feels that isnt causing the pneumonia.  My pneumonia is hard to diagnose as it is never audible, it shows up early in a ct scan, but doesn’t show up in a chest X-ray until pretty advanced.   In 2015,  I had pneumonia that got so advanced before anyone could diagnose it that I ended up in the hospital for 3 days.  I’ve been in emergency 3 times since then with pneumonia.  I have alpha-1-Antitrypsin deficiency (carrier), but doctors don’t think that is a factor; other immunology tests don’t show anything alarming.  Instances of pneumonia were once a year early on, but have increased in frequency to every 3 or 4 months this past year.   I had asthma as a kid (got allergy shots for 10 years) and had frequent colds with sinus infections and swollen glands.  I have also been on allergy shots for the last 25 years... my allergist made me take a break from the shots every 8 years or so, but as soon as I stopped the shots, I would start getting sick frequently.  This September, I had a follow up ct scan, and was shocked to hear that the scan indicated pneumonia even though I had no cold symptoms at that time.   My doctor has been reluctant (as have I) to put me on the year of antibiotics so far as he has felt the MAC is too minor to warrant the potential negative side effects of the antibiotics...  I have a severe cold with sinus infection and lung tightness this week - waiting to see if the chest X-ray shows pneumonia.  Will see my doctor next week to discuss further.
if any of you have similar issues with recurring pneumonia, I would sure like to hear from you!  

4 days ago

  • NewestOldestClick to View All Comments18 comment(s)
  • KandyAs of a few weeks ago with upper GI i show signs Barrets esophagus he wants to see me every 6 months to a  year for checkup.21 hours ago
  • KandyMy lung dr is very aware of aspiration and is fanatic about it as can cause pneumonia. He did have me to a simple swallowing test.  21 hours ago
  • ksuzanneVery interesting Kandy​. My reflux is not as bad as it was as I'm on protonix and have eliminated trigger foods. I was dx with gerd, and some other "itisis" via endoscopy. There was mention in the biopsy to monitor for possible Barrett's like you.  For me there was a perfect storm of allergies, sinus infection and some minor gerd until I awoke one night choking from reflux--and it was all down hill from there. I probably developed Pneumonia eventually, but all that showed up on x-ray was a lung nodule at the time. There is the silent gerd too which could explain the nature of frequent pneumonias, so you should bring that up with the doc, Lvo.
    Kerie19 hours ago
Ksmiles123

Ksmiles123Hello! Below is a link on pseudomonas :https://www.webmd.com/a-to-z-guides/pseudomonas-infection

5 days ago

Kandy

Kandy

6 days ago

suze

suzeasked the question: Top Centers for MAI Treatment?

Hi I was recently diagnosed with MAI And live in a rural area...Two Pulmonologist’s that I’ve traveled to have said not to seek treatment because of side effects...Now a third says that I should get treatment....Where are the top places to go for …

6 days ago

Ksmiles123

Ksmiles123

Hello! How are you doing today after a long holiday weekend?   Cold weather is upon .  Do you have any diversional hobbies that you do while indoors?

1 week ago

sut

sutanswered the question Has anyone tried N-A-C or Quercetin (two different OTC supplement) to reduce mucus production?

Hi Jay I just started using NAC a week ago. I'm hoping it will cut down on the sputum. It seems if I lay down and clear the sputum out at noon, I am ok for about 6 hrs. I also will report back in a month with results.
Brandon Made PramanaKsmiles123 also answered the question Brandon and 2 others also answered the question

1 week ago

Gumby

Gumbyanswered the question Hypervolt instead of a Vest or chest PT?

So cool! When I was a child they would use something similar on me for my CPT at Children's Hospital. :)
KandyKsmiles123 also answered the question Kandyand 1 other also answered the question

1 week ago

Ksmiles123

Ksmiles123

Hello! I hope that you are attempting to make the best of this day, despite the medical challenges we face.  I am grateful for this site and all of you.  None of us are alone on this journey, one day at a time. 

1 week ago

Myrnie

Myrnie

Glad to find this group. Happy thanksgiving. I use an air clearance machine and a nebulizer twice daily, avoiding the tough antibiotic treatment but not for sure how long.  We have an outdoor hot tub.  Has anyone heard of a hot tub being problematic?  Myrnie

1 week ago

Tightlines1

Tightlines1

😀
Hello, I am wondering if you all can help me out on more information on bronchiectasis ? I have severe persistent chronic allergy asthma type II and mild COPD. I need to get factual information that my allergy asthma or COPD is the cause of my bronchiectasis? Can anyone please help me where I can get the research information please? I have EOSINOPHILS and my allergy test was super high! (0-100), and my results were 711 , I’m allergic to mold, dust mites, grass and pretty much everything that is green! Lol.  Tress, grass etc..  I really appreciate and thank you.  Ed 

1 week ago

Tightlines1

Tightlines1

😁
Going fishing in a couple hours, don’t sleep to well.  

1 week ago

michebre

michebre

Hi I am looking for a support group in Tucson, AZ. My wife has MAC and Bronchiectasis and is enduring the 1.5 year treatment. At the moment we have little emotional support and I am looking for a support group we both can attend.


Any suggestions would be greatly appreciated.


Thank you,
Michaebre

1 week ago

Island Girl

Island Girlanswered the question How cautious must you be with water?

Very interesting indeed. Once I finish these antibiotics, (just started) and deemed clear of MAC, I sure don’t want to do anything that would cause a reoccurrence. It is causing me a lot of anxiety. I moved to Southwest Florida about 6 yrs ago and now I …
Maureen SKandybuzzinand 2 others also answered the question Maureen Sand 4 others also answered the question

1 week ago

Gumby

Gumby

Hi there!  Newbie here.  I am 44 years old...DX with Bronchiectasis at age 16 years.   My limited knowledge throughout the years is my lungs are "damaged."  Excited to join a community as it is hard to find support or others with Bronchiectasis.  I do not know another single person with Bronchiectasis.😀

1 week ago

Gretchen

Gretchen

What are your Thanksgiving plans? We know with chronic illnesses it is not just burn out that you feel but possible true exhaustion. Protect your energy during this busy time of year. It is ok to say no thank you and take care of you. Gratitude all around this season.

1 week ago

Made Pramana

Made Pramana

Hello.. Sorry to inform you that I am currently being hospitalized. I went to the ER on last Friday because of high fever. My cough was getting worse too. Hard to describe it since I already went to a pulmonologist (private practice) twice previously but it were not effective I think.
Currently having antibiotics, antifungal, dexamethasone intravenously and also combivent through nebulizer.
The fever already subsided, it’s normal now. I am using oxygen 2 LPM. It is a little bit tiring for me when the doctor can’t give a clear explanation. I asked about hypertonic saline NaCl 3% nebulization but he will only give the isotonic one (0,9%). I’m being reluctant to ask my concern to him.
But at the moment I just need to take a rest and enjoy the hospital bed. Thank you so much for listening. I will keep informing my condition.

1 week ago

Dinah

Dinah

I would like to know if any of you with bronchiectasis have found certain foods that you should avoid?  For instance someone has told me I need to cut out all dairy and cheese products as they thicken mucous.  Any thoughts on diet for someone with bronchiectasis?
Dianh

2 weeks ago

Ksmiles123

Ksmiles123

Hello! Do you check drug interactions?  The link below is an easy way to double check that your meds don’t interact in a negative way.
Drugs.com/drug interactions.html



2 weeks ago

Tracer

Tracer

I have looked into  UV filtration with micron filtration unit placed at waterline point of entry. Has anyone done this? Has anyone else done this and does this in fact kill NTM bacteria?

2 weeks ago

Ksmiles123

Ksmiles123

Hello! Are you traveling for the holidays?https://www.ntminfo.org/traveling-tips/

2 weeks ago

Gretchen

Gretchen

You are invited to join Carl Stepnowsky of ASAA, along with the COPD Foundation's Elisha Malanga and Sergio Martinez, as they present their findings and lessons learned of the O2verlap study, which targeted people with both COPD and obstructive sleep apnea. On Thursday, November 21, 2019, at 1:00 pm EST.
Link for video and audio: https://meetings.ringcentral.com/j/1489631423

2 weeks ago

Dale O

Dale O

I have asthma and was diagnosed with bronchiectasis confirmed by CT scan in 2014. Since that time I have had one year without exacerbations but typically have 3-5 per year. When I am well I exercise every day and have maintained good residual lung function. I am 65 now and each episode takes me longer to recover. I want to get a percussor and an acapella but need some advice about which ones the group would suggest. 

2 weeks ago

Gretchen

Gretchen

Attending the Rare Disease Clinical Research Network (RDCRN) meeting in Bethesda, Maryland today. The goal is to advance the diagnosis, management and treatment of rare diseases. They ensure that patients are part of this process. I am excited to be part of the Patient Advocacy Group within this network.

2 weeks ago

Ksmiles123

Ksmiles123

Hello! Are you getting enough protein on a daily basis ? We need increased protein to assist us with healing . Below is a link which reviews different ways to up your protein intake.https://www.choosemyplate.gov/ten-tips-with-protein-foods-variety-is-key

2 weeks ago

Island Girl

Island Girl

Good morning everyone. Thanks so much for welcoming comments. I will be checking into all the helpful websites you all recommend.
Big day today. I start physical therapy for my post op rotator cuff surgery and I start my 3 drugs today, Azithromycin, Ethambutol, & Rifampin. Wish me luck. 🙂

2 weeks ago

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Medical Advice

It is not our intention to serve as a substitute for medical advice and any content posted should not be used for medical advice, diagnosis or treatment. While we encourage individuals to share their personal experiences with bronchiectasis and NTM, please consult a physician before making changes to your own disease management plan.