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 week ago

Kristen

Kristenanswered the question How cautious must you be with water?

Glad you have found this community, Tracer. I hope you will find support and answers here!
Ksmiles123 also answered the question Ksmiles123 also answered the question

18 hours 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. ๐Ÿ™‚

23 hours ago

Ksmiles123

Ksmiles123

23 hours 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. 18 hours 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.16 hours ago
Kandy

Kandyvoted on Avoiding Environmental Exposure to NTM

Gave a thumbs up for a blog post!

1 day ago

Island Girl

Island Girl

Hello Everyone,
This is my first post so giving a little background. Iโ€™m a 71 yrs old female and had Bronchiectasis for about 11 years now. This year Iโ€™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. Iโ€™m recovering from rotator cuff surgery now which I think the mega doses of Cipro early this year caused tendon weakness. Iโ€™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.

1 day 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 …

3 days ago

Delia

Deliavoted on Avoiding Environmental Exposure to NTM

Gave a thumbs up for a blog post!

4 days 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

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4 days 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

NTM Lung Disease: What it is and What you Need to Know

If you have chronic obstructive pulmonary disease (COPD), you know that it is most often a combination of emphysema and chronic bronchitis. You know it is a chronic, progressive disease with shortness of breath, coughing, wheezing, and tightness in the chest. However, you may not have heard, or …

4 days 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

5 days ago

Tired

Tired

I am currently being treated for the second time with ntm avium intercellulite found out resistant to one of drugs have started amakain intervenously 3x a week  rifampin 2 pills daily ethambul 3 pills a day and changed to clofazimine 2 pills daily blood work shows low rating anyone else take this and is anyone just living with this disease that is advanced thank you

5 days ago

Ksmiles123

Ksmiles123commented onFoliage and the Respiratory Patient

 Kristen,You are most welcome! The real problem starts for some respiratory patients when they pick up the leaves without a mask on ......

6 days ago

Ksmiles123

Ksmiles123answered the question Anyone else live 65 years after Bronchectasis Dx?

Gary, Hello! I hope that you can go for the extra 20 years- you have a lot of โ€œ inspirational juiceโ€ to share with others. :
Kristen also answered the question Kristen also answered the question

6 days ago

Kristen

Kristen

Hi everyone! Leaving a note to see how Pramana is feeling now that this round of antibiotics is done. 


And how is the U.S. group feeling during this cold snap?

6 days ago

Kristen

Kristencommented onFoliage and the Respiratory Patient

 Thanks for this article. I've noticed so many of the leaves here are just covered in mold -- there's almost no escaping them when walking the dog outside, etc. That can't be good for his lungs either!...

6 days ago

Ksmiles123

Ksmiles123answered the question What do you drink on a plane when boiled water or spring water is not availed?

Spring water is recommended. Hot boiling water is the next safest option or just order a different type of beverage. I stay away from tap water
SDPKK also answered the question SDPand 1 other also answered the question

6 days ago

Ksmiles123

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

KK, So sorry that you had a bad experience. I have reached out to Pall for some information to post
KKLoopy also answered the question KKand 1 other also answered the question

1 week ago

Ksmiles123

Ksmiles123

1 week ago

Ksmiles123

Ksmiles123

Good morning! Quite burr here in PA.
I hope that you are taking all preventative measures to keep well as we are approaching the winter/ flu season.
Infection control procedures are crucial when entering hospitals, nursing home, doctors offices.
Airways clearance, nasal washes are recommended if you have dry heat.  Scarfs, keeping warm, a spoonful of honey and vitamin C from some apples or fruit may keep the doctor away.   Being proactive is far better than being reactive.

1 week ago

Ksmiles123

Ksmiles123

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

1 week 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. 

1 week ago

Ksmiles123

Ksmiles123

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

1 week ago

Ksmiles123

Ksmiles123

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

1 week 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

1 week 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

1 week ago

Ksmiles123

Ksmiles123

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

1 week ago

Ksmiles123

Ksmiles123

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

1 week 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

2 weeks 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

2 weeks 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.   

2 weeks 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! 

2 weeks ago

Vinny M

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

Gave a thumbs up for a blog post!

2 weeks ago

doreen

doreen

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

2 weeks 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

2 weeks 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!

2 weeks 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. 

3 weeks 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?

3 weeks 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....

3 weeks ago

Ksmiles123

Ksmiles123

3 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

3 weeks ago

Ksmiles123

Ksmiles123

Hello! How are you feeling with the weather changes?

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.