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

5 days ago

Ksmiles123

Ksmiles123

Hello! I hope that you are prepared for the cold front .  It is so important to cover your mouth/ nos

10 hours ago

Ksmiles123

Ksmiles123answered the question Anyone using PALL Med filters on shower or taps?

Working on finding research.
Loopy also answered the question Loopy also answered the question

17 hours ago

Trusails

Trusails

Hello


I am new here. Living in Plymouth UK and looking for a physician knowledgeable in MAC and Bronchiectasis, and treatment. 
I have a physician n the US, but I have had a flare up while here. I am spending an extended period of time in the U.K. and am unable to
Find someone close by. 
Thank you for any info you might have. 

19 hours ago

SDP

SDPanswered the question What do you drink on a plane when boiled water or spring water is not availed?

Thank you for your response. I appreciate your suggestions. Do you drink regular bottled water? It was suggested by my physician to drink only natural spring water or boiled water. Is this what most NTM patients do? I have just been diagnosed and am …
Ksmiles123 also answered the question Ksmiles123 also answered the question

1 day ago

Ksmiles123

Ksmiles123

Hello! Interesting article on medical tourism and ntm infections. https://www.ntminfo.org/medical-tourism-ntm-infections/

1 day ago

Ksmiles123

Ksmiles123

Hello! Below is a link on antibiotics for NTM:https://www.ntminfo.org/medications/

2 days ago

Ksmiles123

Ksmiles123answered the question ARICAYCE side effects

Jeg, Hello! Did your doctor give you parameters to report to him re: your heart rate and oxygen levels ?
HollywoodGretchen also answered the question Hollywoodand 1 other also answered the question

2 days ago

SDP

SDPasked the question: What do you drink on a plane when boiled water or spring water is not availed?

safe beverages on planes and in rest

3 days ago

Ksmiles123

Ksmiles123

Hello! The link below is the Nutrition Guide, from the NTM Patient Pamplet, Insight.https://www.ntminfo.org/nutrition-guide/

3 days ago

Ksmiles123

Ksmiles123

Hello! Below is a link of NTM specialists in the USA.https://www.ntminfo.org/united-states-of-america/

5 days ago

Ksmiles123

Ksmiles123

Hello! Open enrollment for Medicare plans continues until 12/15.  The following article reviews the basics:https://www.healthline.com/health/consumer-healthcare-guide/how-do-health-insurance-deductibles-work

6 days ago

Ksmiles123

Ksmiles123

Hello! A good review of levels of humidity and the impact on respiratory patients in the link below. Humidifiers are not recommended for NTM patients.https://www.healthline.com/health/copd/humidity#high-indoor-humidity

1 week ago

Ksmiles123

Ksmiles123

Hello! How are you feeling today with the clocks reset?  Tis harder to deal with the shorter days for many who do not head out to work each day.
I hope that you are taking all the possible preventative measures to stay strong , as healthy as possible for this upcoming winter.   

1 week ago

Maximiliana

Maximiliana

 Iโ€™m new here. Iโ€™m  A 63-year-old female diagnosed with bronchiectasis and MAC 10 years ago. After 18 months of treatment was cleared of MAC. Life was OK until a year ago when I was diagnosed again with MAC. Found out I am resistant to all antibiotics except for one not available in the USA that treats leprosy! My doctor does not know what to do for me  and wants me to go to National Jewish Health in Colorado which my insurance does not pay for.  The worst part of this whole disease is I donโ€™t know another soul who has it! 

1 week ago

Vinny M

Vinny Mvoted on What is Bronchiectasis, and how can it overlap with COPD?

Gave a thumbs up for a blog post!

1 week ago

doreen

doreen

Does everybody here get the pneumonia shot, just got mine today

1 week ago

Gretchen

Gretchen Community Announcement: Vaping has been in the news quite often since this summer, with vaping related illnesses and deaths. The COPD Foundation joint the Center For Disease Control and other patient advocacy organizations to express concern over the growing numbers of vaping related illnesses. Read the full statement here: https://www.copdfoundation.org/Take-Action/COPD-Policy-Issues/Vaping-and-COPD.aspx

Vaping and COPD | COPD Foundation

The COPD Foundation joins with the Centers for Disease Control and our patient advocacy partners in expressing concern over the growing reports of acute vaping related disease and in urging people to refrain from using electronic cigarette or vaping devices

1 week ago

Ksmiles123

Ksmiles123Hello! There should be no excuses for not getting a flu shot -https://www.health.com/cold-flu-sinus/free-flu-shots
Prevention is much easier than taking additional medications.

All the best!

1 week ago

Made Pramana

Made Pramana

Hi! My mucus didnโ€™t look very good because there was a blood streak in it and I took azithromycin for five days (500 mg in the first day and 250 mg in the second until fifth day). There was no blood on my mucus yesterday but now I see the blood streak again. I feel okay at the moment but my cough is different than usual. I should go to the doctor soon. 

1 week ago

JEG

JEGasked the question: ARICAYCE side effects

I have only been on this drug for 7 days but have noticed after each treatment my oxygen goes down and my heart rate goes up. My physician said at this time he is not concerned. Has anyone else had these side effects this early in treatment?

1 week ago

Kelly Murphy

Kelly Murphycommented onAvoiding Environmental Exposure to NTM

 I tried to originally and tried again today. Can't get it into hyperlink format. I guess it will just have to be copy and paste. I'm sorry....

1 week ago

Ksmiles123

Ksmiles123

2 weeks ago

Ksmiles123

Ksmiles123

Hello! NYU is hosting a CME NTM event on 12/9, details below.https://www.highmarksce.com/nyumc/index.cfm?do=pln.viewActivity&activityCode=064-20

2 weeks ago

Ksmiles123

Ksmiles123

Hello! How are you feeling with the weather changes?

2 weeks ago

Ksmiles123

Ksmiles123

Hello! Do you prepare yourself for your pulmonologist appointments?
Below is a helpful tool to assist you.https://www.aboutntm.com/about-ntm-support/AboutNTM_Discussion_Guide.pdf

2 weeks ago

Ksmiles123

Ksmiles123Hello! Are you sleeping well at night?
Sleep is so important for the healing process to occur.  Most patients sleep like a baby when they are really sick.  I feel that the associated concerns of dealing with a chronic disorder keep many patients from getting a good nights sleep.https://www.healthline.com/nutrition/17-tips-to-sleep-better

17 Proven Tips to Sleep Better at Night

This article lists 17 evidence-based tips to sleep better at night. Getting good sleep is very important for optimal health.

2 weeks ago

Jane Martin

Jane Martinvoted on What is Bronchiectasis, and how can it overlap with COPD?

Gave a thumbs up for a blog post!

2 weeks ago

Jane Martin

Jane Martincommented onWhat is Bronchiectasis, and how can it overlap with COPD?

 Thank you, Gretchen, for this informative article! ...

2 weeks ago

Ksmiles123

Ksmiles123commented onAvoiding Environmental Exposure to NTM

 Kelly,Thank you so much for this update. Can you please hyperlink the article? I can forward to an expert to comment on....

2 weeks ago

Ksmiles123

Ksmiles123commented onAvoiding Environmental Exposure to NTM

 Jenny,Yes, I add another item to my list after each patient conference; they are continuously leaning of new Ntm sources....

2 weeks ago

Ksmiles123

Ksmiles123Hello! Are you doing nasal washes? Recommended at this time of the year when we turn on the heat; our mucous passages become dry w the heat.
https://www.nationaljewish.org/education-training/patient-education/print-multimedia/materials-printer?nodeId=3e34a0d6-df09-4e25-9d63-44fd2a9e4448

2 weeks ago

BlixtenToo

BlixtenToo

Today I am feeling pretty good. I'm new to the group and would like to say thank you for being here. Most of my support community is online. I contracted NTM Avium species about 10 years ago and since that time have been monitored fairly closely--Sweden doesn't rush into treatment. It has taken me years to figure out how the disease works and tools to use to keep mucus production down. I'm 76 years old. My breathing is compromised but I am basically healthy. But I worry for the future and wonder how much longer I can continue without treatment. On the other hand, the reports that I have heard about the treatment lead me to believe that I probably couldn't withstand it. So that is a bit about me. Looking forward to being in community with this community.

2 weeks ago

Ksmiles123

Ksmiles123

Hello! The article below offers a few good tips for acid reflux:https://www.onhealth.com/content/1/28_tips_for_nighttime_heartburn_relief

2 weeks ago

Kandy

Kandyvoted on Avoiding Environmental Exposure to NTM

Gave a thumbs up for a blog post!

2 weeks ago

Ksmiles123

Ksmiles123

Hello! Do you understand why protein intake is so important for your optimal health?https://www.webmd.com/diet/ss/slideshow-what-protein-does-for-your-body

2 weeks ago

Brandon

Brandon

Good morning!

There is an interesting webinar (along with others, prior) that talks about water safety in hospitals, one of our more vulnerable places that we rely on when we may be at our most ill. Waterborne illness related to the
consumption of contaminated or inadequately treated water is a global
public health issue. Within hospitals, waterborne pathogens present a
major and preventable cause of healthcare-acquired infections.

https://event.webcasts.com/starthere.jsp?ei=1233451&tp_key=a7b1c2cc64&utm_campaign=2500822_Water%20webinar%3A%20off-mains%20hospital%20water%20supplies&utm_medium=email&utm_source=The%20Royal%20Society%20for%20Public%20Health&dm_i=2LGE,1HLNA,6UQSNT,4ZXNR,1












2 weeks ago

LJ Walsh

LJ Walshvoted on What is Bronchiectasis, and how can it overlap with COPD?

Gave a thumbs up for a blog post!

2 weeks ago

Ksmiles123

Ksmiles123answered the question Anyone have a sputum sample that cultured Mucor?

Brigby, Hello! Yahoo! I am so happy that your culture was just a contaminant and that you are doing ok. Thank you sooo much for updating us. Please check in periodically and take all preventative measures to keep well.
BRigbyKandy also answered the question BRigbyand 1 other also answered the question

2 weeks ago

Ksmiles123

Ksmiles123answered the question Does BE partial or complete lobe reduction reduce exacerbations and improve quality of life?

Gary, It is ok to be a โ€œ bad boyโ€@ times. I donโ€™t think that many patients with chronic disorders can be 100% compliant all the time . We are on the right path as long as we try out best to get some exercise as frequently as we possibly can. One day …
GaryLGretchen also answered the question GaryLand 1 other also answered the question

2 weeks ago

Made Pramana

Made Pramanavoted on Avoiding Environmental Exposure to NTM

Gave a thumbs up for a blog post!

2 weeks ago

Brandon

Brandon voted on Avoiding Environmental Exposure to NTM

Gave a thumbs up for a blog post!

2 weeks ago

Brandon

Brandon voted on What is Bronchiectasis, and how can it overlap with COPD?

Gave a thumbs up for a blog post!

2 weeks ago

Kelly Murphy

Kelly Murphycommented onAvoiding Environmental Exposure to NTM

 I've learned that if someone has the so-called "pink slime" that is found on shower curtains or bath tubs or toilet bowls, they more than likely don't have MAC in their water supply. If you have it, you know it. The "pink slime" is methylobacterium....

2 weeks ago

Kandy

Kandycommented onWhat is Bronchiectasis, and how can it overlap with COPD?

 I had asthma then overlapped to copd which is emphysema. Then 2014 my pulmo I was diagnosed with bronchiectasis. ...

2 weeks ago

Kandy

Kandyvoted on What is Bronchiectasis, and how can it overlap with COPD?

Gave a thumbs up for a blog post!

2 weeks ago

Sign In to Participate
Or register to become a member

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.