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

4 weeks ago

ksuzanne

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

I know this is old but I found this after I asked a new question about mucomyst. I'm prescribed the generic in bottles and have to syringe it along with albuterol in the nebulizer. I have not used it much at all as I didn't feel it helped to bring up the …
KandyKsmiles123 also answered the question Kandyand 1 other also answered the question

10 hours 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.

11 hours ago

Kandy

Kandyanswered the question Anyone treated with augmentin antibiotic?

That is penicillin ? I have no faith in that. I take zpak 3 times a week.So far its helping to stop infections also helps inflammation of which is more my trouble.

11 hours 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 …

11 hours 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?

11 hours 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

13 hours 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!  

1 day ago

  • NewestOldestClick to View All Comments11 comment(s)
  • LvoEveryone - thank you for your thoughts and info.  I had severe chest pain again this morning and emailed my doctor again.  He called me right away, had me come in for ct scan, blood tests  and another sputum test.  The ct scan showed pneumonia in both lungs!  He changed my antibiotic from augmentin to levaquin.  He says he can see that my pneumonia’s aren’t audible or seen in xrays because the infection is not concentrated in one place like most people get - instead it is spread in small infections in multiple places throughout the lungs.  So glad I kept emailing my doctor with new symptoms instead of trying to ride it out.  Dr. thinks we should treat the Mac... he says pneumonia is not a regular symptom of Mac, but he thinks in my case it could be opening the door to pneumonia’s, and frankly he can’t think of anything else to do given all my positive test results with ent, immunology, gastrointestinal, etc.  I’ve had all the pneumonia vaccines, but they have clearly not worked.  I have always tried to stay away from medicines because of the side effects... so it is hard for me to accept that I can’t think of anything else to do but try treating the Mac.6 hours ago
  • LvoIn answer to Ksmiles  - yes; I do nasal washes. 😊6 hours ago
  • Made PramanaHi! I just got out of hospital and my x-rat showed pneumonia. I got antibiotics for that. I hope the antibiotic could help your pneumonia.
    Then if you have MAC infection I hope your doctor will help to treat it.2 hours ago
Ksmiles123

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

1 day ago

Delia

Deliaanswered the question Top Centers for MAI Treatment?

Hi Suze, the link below leads to NTMir's Physician Referral List. The docs on this list have indicated that they are familiar with NTM lung disease and diagnostic and treatment statement/guidelines. It may be beneficial for you to start by searching the …
Ksmiles123 also answered the question Ksmiles123 also answered the question

2 days ago

Kandy

Kandy

2 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 …

3 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?

3 days 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

5 days 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

6 days 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

1 week 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



1 week 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

Ksmiles123

Ksmiles123

2 weeks ago

  • NewestOldest
  • KristenOn the topic of sleep: I have found my Fitbit to be very helpful in tracking both the duration and quality of my sleep. I love that it has this feature. I am learning many smartphones have apps or basic (read: free) functionality that can help you to track sleep time, send you bedtime reminders, help you to fall asleep if you wake in the night ... I find this type of technology so helpful and it usually correlates quite well to how I feel the following day. 2 weeks ago
  • Ksmiles123Kristen,
    Great tips, reminders.  I think that many people with chronic issues have sleep challenges.   Patients are exhausted from the infection when first diagnosed.  Quality of sleep is so important for the healing process.2 weeks ago
Kandy

Kandyvoted on Avoiding Environmental Exposure to NTM

Gave a thumbs up for a blog post!

2 weeks ago

Island Girl

Island Girl

Hello Everyone,
This is my first post so giving a little background. I’m a 71 yrs old female and had Bronchiectasis for about 11 years now. This year I’ve had three major infections, pseudomonas, Achromobacter Xylosoxidans, and now MAC. I was in Cleveland Clinic FL for 4 days and on IV antibiotics at home for 2 weeks for the Achromobacter. I will start the big 3 drugs daily for at least a year as soon as my drugstore gets them in. I had my baseline lab this AM. I’m recovering from rotator cuff surgery now which I think the mega doses of Cipro early this year caused tendon weakness. I’m happy to have found this forum to learn and discuss our common illness. I pray that the side effects are mild and I can tolerate them for the prescribed period of time.

2 weeks ago

Tracer

Tracerasked the question: How cautious must you be with water?

Diagnosed with bronchiectasis & NTM abscessus/boletti. So confused as to what part water plays in this disease. I've read different things and not sure what's being too cautious or not cautious enough. One article recommended "whole house water …

2 weeks ago

Delia

Deliavoted on Avoiding Environmental Exposure to NTM

Gave a thumbs up for a blog post!

2 weeks ago

Ksmiles123

Ksmiles123Hello! I am posting the link below on Dollar Tree and OTC medications; I know that patients buy generic mucinex and other cold/ flu remedies at these stores:
https://www.medicinenet.com/script/main/art.asp?articlekey=225950&ecd=mnl_day_111519

2 weeks ago

Kristen

KristenThe COPD Foundation has recently posted a new blog post to inform and raise awareness about NTM lung disease. We hope you will take a look!

https://www.copdfoundation.org/COPD360social/Community/COPD-Digest/Article/1511/NTM-Lung-Disease-What-it-is-and-What-you-Need-to-Know.aspx

2 weeks ago

GaryL

GaryLanswered the question Travel tips with a chronic condition?

When I have traveled by plane in the last 8 or 10 years, I use a portable compressor (I try not to fly anymore because of environmental issues.) . One has to contact the airline and get a form to be completed by your pulmonologist, and then submit the …
Ksmiles123CheriMKandyand 1 other also answered the question Ksmiles123and 3 others also answered the question

3 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.