Delia

Delia

Thanks to everyone who completed COVID-19 survey #2! The survey is now closed, and we are analyzing the data from all 776 respondents. We will post the results once analyses have been completed.

2 days ago

Ksmiles123

Ksmiles123answered the question How do you feel about states re-opening?

Elaine, Hello! What type of exercises are you doing? What type of airway clearance device do you use? Some patients use .3NS to assist in bringing up sputum. Do you think that the ups and downs of your condition are impacted by weather changes? Kati
Elaine F.L.KandyGumby also answered the question Elaine F.L.and 2 others also answered the question

11 hours ago

Delia

Delia Hi all, I wanted to let you know of an upcoming series you may be interested in: Insmed is launching a nw program called 'Let's Talk Lung Health', a live discussion designed to raise awareness and provide important information about NTM lung disease. During the series of 5 live events, participants will be able 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

The first event is scheduled to take place on Wednesday, June 24th. If you are interested in learning more and/or registering for these events, check out the link below.

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

1 day ago

Ksmiles123

Ksmiles123

Hello! Do you use the acapella for airway clearance? Below is information on use and cleaning instructions. https://www.nationaljewish.org/conditions/medications/airway-clearance-devices/acapella-choice

1 day ago

Ksmiles123

Ksmiles123answered the question Anyone taking Arikayce? At $13,000 a month, how do you pay for it?

Bmblebee, Hello! I hope that it works out for you. The cost of medications, supplies is an issue for most patients.
Chicken_Little also answered the question Chicken_Little also answered the question

1 day ago

Gretchen

Gretchen

On behalf of The Fight is In Us coalition, we are seeking to mobilize tens of thousands of people in the United States who have recovered from COVID-19 to donate their blood plasma, which contains vital antibodies that have fought off the disease already once, and could now help others do the same.

Individuals who have recovered from COVID-19, or know someone who has, can visit TheFightIsInUs.org to understand if the recovered individual may be eligible to donate and find a nearby blood or plasma donor center using a simple self-screening tool. The coalition offers more than 1,500 locations in the United States at which COVID-19 survivors can choose to donate. Please help us spread the word!  
https://thefightisinus.org/en-us#home

1 day ago

Ksmiles123

Ksmiles123answered the question How cautious must you be with water?

Bmblebee, Hello! Yes, it is a very frustrating, challenging disorder. I had my first reoccurrence after a couple of years and had to restart the big 3 once again. MAC grew out positive on the culture several other time but I was not symptomatic, hence …
BmblebeeIsland GirlMaureen Sand 3 others also answered the question Bmblebeeand 5 others also answered the question

2 days ago

Bmblebee

Bmblebeeanswered the question Re: Clofazamine

I took 100 mg for 6 months before I started noticing the tanning. Then my dose was cut to 50 mg for another 6 months. I am allergic to a lot of the other meds so there were not many options to choose from I am getting ready to start another round of it …
teresa8290Ksmiles123 also answered the question teresa8290and 1 other also answered the question

2 days ago

Ksmiles123

Ksmiles123

Hello! How are you coping with the reopening phase?  It is really heart wrenching to watch the recent crime and current riots on tv.   So many are walking around unmasked, as if nothing ever happened. I hope and pray that a resurge doesn’t happen soon.  We need more time to get more medications on board and further advancement with a vaccination. 

2 days ago

  • NewestOldestClick to View All Comments4 comment(s)
  • Ksmiles123Kristen,
    Stay safe and healthy back to you!:) Katie22 hours ago
  • KandyThe rioters are going across SD and are headed to our capitol Pierre SD.  My grandson got called up in the guards headed there.  This is so bad.  20 hours ago
  • Ksmiles123Kandy,
    Yes, this scene is really bad. Many who are  rioting are not protected, this is not good for the physical health of our country .   We have so many unanswered questions re: resurge of the virus.11 hours ago
juliev

juliev

Hello. I am new to the site.  My bronchiectasis was discovered four years ago on a CT scan while I was undergoing treatment for colon cancer.  My primary doctor is a pulmonologist. He said he wasn't overly worried because I was asymptomatic but it was something we would monitor.  I recently developed a chronic cough and sputum tests indicate I have a MAC infection.  I am still in a "waitful watching" period to decide when to begin treatment but, in the meantime, I have begun to read up on both conditions. I have a question about drinking water.  I see that many people on this site boil their water for daily use.  Is bottled water safe to use?  We have turned up the heat on our water heater and I am fine with just taking baths but I am worried about drinking water. We have a filter system on our kitchen sink but the filter is only changed once a year. 

5 days ago

  • NewestOldestClick to View All Comments4 comment(s)
  • Ksmiles123Juliev,
    Below is the patient manual, Insight: https://ntminfo.org/insight-patient-pamphlet/4 days ago
  • julievThank you for the information.  Is bottled spring water preferable to boiling your own?  If so, are there any brands recommended for NTM patients.  I know some studies have found some bottled waters to be no better than tap. I was also wondering about the safety of sodas, wine or beer.  3 days ago
  • Ksmiles123Hello! The expert NTM microbiologist, Dr Joe Falkinham, Va Tech recommends that you boil water for 10 minutes ago.  Poland Springs was voted the best bottled water when the did a lab study years ago- I don’t have a recent update.  Soda from a public fountain is not recommended.  Lo sulfite wine is preferred by many patients; A purer beer would be recommended.  Alcohol  is not recommended when taking the NTM meds.  It also may stir up a quiet infection if a patient indulges in more than a small amount.  Many of us have to watch our alcohol intake due to ongoing reflux issues.  I hope that you can keep the NTM quiet .  We are here to support you in this journey- you are not alone.  Katie3 days ago
Ksmiles123

Ksmiles123

Hello! How are you doing? Please continue all necessary precautions as the the reopening phase continues.

5 days ago

Ksmiles123

Ksmiles123answered the question Halotherapy (Salt Room Therapy)

Gumby, Sorry about that. The article was very long and was followed by another long article. The post did not include the information on salt therapy. Below is a different link: https://community.aafa.org/blog/aafa-explains-is-therapy-safe-and-effective …
Elaine F.L. also answered the question Elaine F.L. also answered the question

5 days ago

Daniel

Daniel

Not doing so well. I was hospitalized on new years eve at the VA hospital in Durham, NC. I was sob with exertion, wheezing, coughing up mucous plugs. No fever. I was admitted for Asthma. Gave 1 sputum sample came back positive culture, and Positive for NTM Chelonae,/susp abscessus. I was given at least 3 steroid taper packs, antibiotics with no relief. D/c'd on steroid taper pack. This is at least the 3-4th time I've had either NTM Chelonae susp. abscessus. I've been sick again this last 3-4 weeks with sob with exertion, coughing , wheezing. Now I have been R.A.S.T skin tested and blood work done coming up positive for Aspergillous which I was treated for in 1997. No pulmonary MD team wants to treat. Their statement is side effects worse than benefits. I'm 63 years old and my immune system is not going to be effective as I age. Has anybody had treatment for NTM and were side effects that bad? Also did treatment help. Frustrated very much. - Daniel

1 week ago

Gretchen

GretchenDid you miss our webinar on Thursday, May 21, 2020? It provided the latest updates on COVID-19 and answered common questions regarding topics such as mask use, visiting the doctor and more. A recording of the webinar and the presentation slides are now available: https://www.youtube.com/watch?v=WDyHYUtDLN0&feature=emb_logo 

1 week ago

Ksmiles123

Ksmiles123Https://www.medicinenet.com/script/main/art.asp?articlekey=234067

1 week ago

Ksmiles123

Ksmiles123Hello! I hope that you have a pleasant Memorial Day . The article below discusses how the corona virus has impacted this holiday.  We are advised to keep up with all infection control precautions, regardless of what our neighbors may be doing , stay safe! ://www.mcall.com/news/local/mc-nws-lehigh-valley-different-memorial-day-20200525-gp5in5f7qnh23pz7byf4fh654i-story.html

1 week ago

Ksmiles123

Ksmiles123

Hello! Many patients reach out for fast carbs when they feel fatigued. The article below describes how these fast carbs impact our bodies. It is very challenging to stay away from fast carbs- however, we can work on being more mindful as the summer approaches of our healthier slow carb options. https://www.nutritionaction.com/daily/what-to-eat/fast-carbs-are-they-hijacking-our-health/

1 week ago

Ksmiles123

Ksmiles123Hello! Some interesting suggestions on dealing with stress are within the article below:https://thriveglobal.com/stories/arianna-huffington-mental-health-action-coronavirus-signs-stressors-solutions/

1 week ago

Gumby

Gumbyvoted on COVID-19: One Patient's Personal Account on the Effects

Gave a thumbs up for a blog post!

1 week 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.



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