Delia

DeliaThe NTM Info & Research NTM & Bronchiectasis Annual Conference is coming to you! 


Learn about the latest advances in research, treatment, and care from leaders in the field of NTM lung disease and bronchiectasis. Program includes: Airway Clearance/ Reducing Exposure and Reinfection/ Medication Management/ Fight Back with Food/ Coping with Chronic illness. 


The Conference will be convened in a webinar format taking place on several different days with the first session taking place on Friday, October 2nd. Click the link below to register!

https://events.r20.constantcontact.com/register/eventReg?oeidk=a07ehatcamn217906c4&oseq=&c=&ch=

3 hours ago

Ktntm

Ktntm

Just recently started treatment for cavitary MAI disease .  I was diagnosed with Bronchiectasis about 4 years ago.  I have been put on Azithromycin 500 mg, Ethambutol 1200 mg 3 times a week.  We are waiting for an approval for inhaled Arikacye.  Has anyone been on these medications and If so can you tell me how you have tolerated them.  Wondering about cough getting worse? ( I really don't have one now), weight loss? Fatique? 

6 hours ago

  • Ksmiles123Hello! Hopefully, your cough and the fatigue will lessen once the meds kick in. Many patients who are concerned with weight loss take supplement shakes to maintain their weight.
    Page 14 of Insight, The NTM Patient Manual reviews they medications and the most common side effects. Hopefully, patients who have been on arikayce will chime in.
    You are not alone on the journey- we are here for you if you have questions, just need to vent or want some support.  Katie3 hours ago
LindyLou

LindyLou

I just found out on Monday that I have Bronchiectasis. I have an appointment with my pulmonologist this Tuesday to go over my treatment plan. I have many questions. Not sure where to start

18 hours ago

Gretchen

Gretchenadded a new article Being a Patient with NTM/Bronchiectasis Can Seem like a Fulltime Job - Tips on Navigating Doctor Office Visits

For many patients, having NTM can turn into a fulltime job—and then some. Outsiders cannot comprehend some of the tasks we deal with unless they have walked in our shoes. Many of us must continue the tasks, week after week for an extended period of time. Not only do we not get paid a penny for this work, we also are left to deal with diminished earnings from our previous jobs and careers, time lost with our friends and families, and an overall lower level of social life and recreational...

1 day ago

Ksmiles123

Ksmiles123

Hello! Do you need some good news to brighten your day? https://www.readersdigest.ca/culture/good-news-stories-world/

1 day ago

Ksmiles123

Ksmiles123

Hello! Below is a list of foods for better lung health; many of us cannot tolerate some of the foods on the list due to reflux: https://www.healthline.com/nutrition/lung-cleansing-foods?slot_pos=article_1&utm_source=Sailthru%20Email&utm_medium=Email&utm_campaign=copd&utm_content=2020-09-22&apid=25246343#16.-Swiss-chard

2 days ago

  • NewestOldest
  • LindyLouI’m new to this wonderful group as of about five minutes ago.  I was just diagnosed on Monday and I have many questions. Is reflux tied to this disease? Do we call it a disease or a condition?18 hours ago
  • Ksmiles123Lindy Lou?
    Disorder sounds lighter.... different people label it w different terms.  Yes, reflux can be associated with many lung conditions.7 hours ago
Sumter

Sumter

Still a bit new at this.  Something I've experienced lately is shortness of breath when cooking.  I have a gas stove/oven.  Trying to determine if I need to switch to electric.  

2 days ago

  • NewestOldestClick to View All Comments5 comment(s)
  • SumterHave another question, maybe you can help with.  I have been communicating with my doctor regarding symptoms.  He's prescribed Advir and order flu and pneumonia shots.  Got my flu shot but have a order for pneumonia.  I issue is that I don't think my doctor is concerned/interested in what's going on with me.  His answers are short and doesn't address concerns in a way I'm expecting.  I go to him because of the insurance I have, but wanted to know if there were other options, like talking to a specialist that deals specifically with this disease?   I will check out of network to see if my insurance will cover.   Trying to find the best approach to this. 1 day ago
  • Ksmiles123Sumter,
    You deserve a MD who will listen to you, your concerns.
    The shots are fine. Let him know whether or not you notice a difference with the advair.
    Is he a Pulmonologist  Check out other Pulmonologist  in your area who are covered by your insurance.
    1 day ago
  • KandySome years ago was seeing an allergist and had a gas stove.  He said I had to get rid of it and also the humidifier   I have had electric since.  21 hours ago
Ksmiles123

Ksmiles123

Hello! Have you ever reached out for a 2nd, 3rd opinion? If so, was there is huge difference in their thoughts? ://health.clevelandclinic.org/why-you-should-consider-a-second-medical-opinion/?mkt_tok=eyJpIjoiTmpaak9ERmxaVFZtWkRBNSIsInQiOiIyeFwvTEhOdm4zVkE0eWk2MDBRZXI2M0ZPbHRURGhCWWVjSXA2enBDNklENm9XWDFLTFJKY3UraXJuZU1LTU5VcVgrUGNyYkJWY1l0bjBnNzJOTFwvWGxCNDREWTRmZ2FDSGZYTzFiem5lOFZ4WVJITTNEbEJDdytCT2lSbVwvVlwvUVcifQ%3D%3D

4 days ago

Sumter

Sumter

Lately I have been feeling dust and debris in my throat and sometimes I have discomfort in my chest.  I want to know if anyone has ever used the O2 Nose Filter and did is help?

5 days ago

Jb

Jb

Hi im a MAC patient that gas been treated for over a year now. Started Arikayce a few months ago and it has made my fatigue and breathing worse. Trying to stick it out since the drug has promising results. Anyone experiencing the same thing?

5 days ago

Sumter

Sumter

Hi, I think I was initially on the wrong site.  But anyways, I was recently diagnosed with Bronchiactesis. Had a small cough and felt the need to frequently clear my throat. I was diagnosed as a result of a CT scan. I've had increased symptoms since diagnosis. Most frightening was shortness of breath and pain in chest and back. From my understanding it is a mild case. I was thrown by this because I have never heard of this before and I don't have a cause or underlying condition, based on my blood work. I'm not sure what to expect going forward. I am currently on Advir twice per day. I don't want this to progress, but not sure how to keep it under control. Any advice for a newbie?

6 days ago

Ksmiles123

Ksmiles123Hello! Do you understand the Covid antibody procedure?testinghttps://www.webmd.com/lung/antibody-testing-covid-19

6 days ago

  • NewestOldest
  • KandyMy daughter was very sick Feb no Influenza A or B they didn't find anything.  So here last month her doctor ordered the antibody test but was negative she she did not have Covid before.  20 hours ago
  • Ksmiles123Glad to read that she did not have Covid.... ; we don’t want her nor you to get sick.20 hours ago
Kandy

Kandyanswered the question Fellow Laryngectomees & Treatment Program

Hi Danny welcome. Mucinex didn't do anything for me.
Ksmiles123Danny also answered the question Ksmiles123and 1 other also answered the question

6 days ago

Danny

Danny

Hi, this is in regards to the comment the other day about the gentleman who had taken Mucinex I just want to say Mucinex makes your heart race and that's why I said that about he shouldn't take but maybe I was wrong maybe I'm not a line I don't know but I know that that is the next does race your heart I can't have a good day

1 week ago

Delia

DeliaHi everyone!

Hope you're all doing well! The next installment of Insmed's Let's Talk Lung Health event series is scheduled to take place on Wednesday, September 23rd at 12pm ET. As a refresher, these events are designed to raise awareness and provide important information about NTM lung disease. Participants will have the opportunity to:
- Learn from a physician expert about the risk factors, signs, and symptoms of NTM lung disease
- Hear from people who are living with the condition
- Learn tips and tools to help manage NTM lung disease
- Ask questions at the end of the program

Click the link below to learn more/if you'd like to register.

https://www.aboutntm.com/event-registration/


1 week ago

Ksmiles123

Ksmiles123Hello! Below is a link to an audio presentation on Covid drug development:updates:https://www.nejm.org/doi/full/10.1056/NEJMe2029886

1 week ago

Two Guess

Two Guess

I am experiencing increase fatigue. I’m Covid free but at risk. I’m short of breath, sore throat, difficulty swallowing and coughing frequently. I have congestion type headaches and some occasional bad breath I believe I get when I have a flair up and this much fatigue. I am on no meds for this condition.  

1 week ago

Rush

Rushasked the question: Fellow Laryngectomees & Treatment Program

I was diagnosed with Bronchiectasis in March 2019 just after I completed 5 months of chemotherapy for MCL (mantle cell lymphoma). During the treatment I had a couple of bouts of running fever so the doctors thought it might be pneumonia. After two bouts …

1 week ago

Ksmiles123

Ksmiles123

Hello! Cooler , refreshing temperatures here in PGH.  How are you coping with the current challenges?  

1 week ago

Ksmiles123

Ksmiles123

Hello! How are you managing with the side effects of the most common NTM drugs? https://m.youtube.com/watch?v=mDMLCcT0FDc&t=17s

1 week ago

Ksmiles123

Ksmiles123Hello! Below is a review of the differences between a bacteria vs. a virus: https://www.mayoclinic.org/diseases-conditions/infectious-diseases/expert-answers/infectious-disease/faq-20058098
Key thing to remember is that a virus needs a host to keep going/ alive.

1 week ago

Ksmiles123

Ksmiles123

1 week ago

Danny

Danny

I've been diagnosed with bronchiectasis for 6 months now I'm having moments I guess they're called flare-ups I haven't seen the pulmonologist yet but I will soon this is all new to me I've been reading about everything about this disease

1 week ago

Peg

Peg

Hi, Sorry, just learning how to manuver on your post. I have seen my pulmonologist 2 times on telehealth for what she thought was "thrush." She had me on 2 types of antibiotics and since it has not gone away, she thinks it is probably not thrush but something else. 
She said I should go to my PCP in person to check the status of my tongue. I do not want to use telehealth for my PCP as I want her to see me in person. I am doing all I can to clear this. I am even staying away from blueberries and mouthwash without dyes ( like purple or red) , and brushing my tongue daily with a gentle toothbrush. It really doesn't hurt in the red raw areas so I can wait till Sept. 25 to see my PCP. My latest thought is that sucking on sugar free cough drops at night is causing the reddish raw area on my tongue, so I do not suck on the lozenges at night, or even during the day in the middle of my tongue. It is just a waiting game. It is actually funny, and I can handle the wait. - Peg 

1 week ago

Ksmiles123

Ksmiles123

Hello! Have you reviewed the NTM/ Bronchiectasis Patient Manual insight ntm patient manual recently? insight ntm patient manual

1 week ago

Ksmiles123

Ksmiles123

Hello! Below is the link for the 123s of Bronchiectasis; it is good to review the bronchiectasis handbook periodically.https://www.bronchiectasisandntminitiative.org/Portals/0/Files/123sBronchiectasis.pdf

1 week ago

Gretchen

GretchenJust remembering all that happened 19 years ago-keeping this country and the world in my thoughts and prayers.

1 week ago

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.



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