BronchandNTM360social welcomes new member Harper who joins 4,154 current members of our community. Weโ€™re glad you're here!

Ksmiles123

Ksmiles123

Do you want to see a respiratory therapist for an evaluation? 
Your pulmonologist can make a referral for a respiratory therapist at your local hospital or clinic. Personal referrals are often better than a random name on a list provided by your insurance company. A  respiratory therapist can review airway clearance techniques, and provide needed information on respiratory care. Respiratory therapists provide a very important service, as part of the healthcare team for BNTM patients. 

1 hour ago

Ksmiles123

Ksmiles123

Hello! The article below reviews the role of a respiratory therapist, the respiratory conditions they treat and what they do on the initial visit: https://my.clevelandclinic.org/health/articles/24982-respiratory-therapist

1 hour ago

Ksmiles123

Ksmiles123

Happy Respiratory Therapist Week to all of the wonderful respiratory therapists who assist BNTM patients. Respiratory therapists certainly make a difference in the quality of our lives via education and advocacy efforts. . We are so grateful to have the following respiratory therapists at the COPD Foundation: our wonderful BNTM leader Christina Hunt, Alyssa Dittner, Assistant Director, Kristen Szymonik, Jonnie Korinko, Stephanie Williams , Mike Hess and all of the other respiratory therapists who are somehow involved directly or indirectly with the COPD Foundation. We are forever grateful to you. Enjoy this special week!

1 day ago

DianeD

DianeD

Hello...
Is it still safe to have houseplants if you have NTM?
I have several very large ones wondering if I have to get rid of them

1 day ago

  • NewestOldest
  • JohnTHi @DinaneD,
    Please keep your house plants. It is known that NTM can live in organic matter in garden soil, but there is no evidence to suggest that the NTM will spontaneously get in the airstream for you to breathe it in. If you touch the soil with your hands, you should wash your hands afterwards. The real danger comes when you have dry organic matter and you throw it into the air, or the soil is very dry and it is very windy, so that you might breathe it in. An example of this would be if you are throwing compost all around the yard, and you breathe it in. I do not see any value in wearing a mask while watering house plants.1 day ago
  • marsrocketUsing watering globes so you are watering less often and covering the soil with decorative pebbles or glass beads might be other options. Definite benefits from having plants in the house if you are comfortable keeping them. 1 day ago
  • Alyssa DittnerAll great recommendations! A good use of wearing a mask would be while mowing the lawn. ๐Ÿ˜„ I love plants!   1 hour ago
Ksmiles123

Ksmiles123answered the question Are you getting out to exercise during this beautiful fall weather?

Das23, I agree wholeheartedly. Setting little goals and adding on each day is the key to exercise success. There was a time when I couldnโ€™t walk a block- I can now walk a distance of a mile on good days. We can never give up- just keep on resetting …

2 days ago

Ksmiles123

Ksmiles123asked the question: Are you getting out to exercise during this beautiful fall weather?

We may not always be up to exercising but exercise is highly recommended for better lung health. We can allow ourselves to take some off when we are not feeling well but we must try to push ourselves to do some type of exercise on the other days. The …

3 days ago

Ksmiles123

Ksmiles123answered the question Clear ct scans with bronchiectasis

Das23, Thank you for inspiring others. Exercise is key for both our physical and emotional health.
das23ChristinaHRuth also answered the question das23and 2 others also answered the question

3 days ago

marsrocket

marsrocketA splash of fall color. I hope you have an excellent weekend. 

3 days ago

ChristinaH

ChristinaHanswered the question Are you prepared for the cold and flu season?

This is a great list, Katie. I can't tell you the number of times that I have come down with "something" (or my kids), and we were on our last box of tissues! No one wants to run out to the store when they aren't feeling good. I would venture to say that …
Ksmiles123Kristen Szymonik, BS, RRT, AE-C (Manager of Public and Professional Education) also answered the question Ksmiles123and 1 other also answered the question

4 days ago

PWW

PWWasked the question: Clear ct scans with bronchiectasis

Does anyone that has bronchiectasis find that with an effective lung clearance technique that they have been able to achive a clean CT scan? Should that be the goal of therapy and is it possible? I'm going to have a bronchoscopy to suction some out and …

4 days ago

Alyssa Dittner

Alyssa Dittner Bronchiectasis and NTM 360 now has a Facebook page! Help us spread the word and stay up-to-date on all the exciting things!Join Bronchiectasis and NTM 360 on our new Facebook page! Weโ€™ll share upcoming events, educational resources and other news. Be sure to like and follow our page and share it with others who may be interested in learning more about bronchiectasis and NTM lung disease. https://www.facebook.com/bronchntm360

Bronchiectasis and NTM 360

Bronchiectasis and NTM 360 is on Facebook. Join Facebook to connect with Bronchiectasis and NTM 360 and others you may know. Facebook gives people the power to share and makes the world more open and...

4 days ago

Ksmiles123

Ksmiles123asked the question: Are you prepared for the cold and flu season?

Preparation of cold and flu toolboxes are strongly recommended. You do not want to sick and realize that you are out of the basic supplies. Going to the drug store when you are sick and fatigued is not good for you nor the other people in the store. The …

5 days ago

Wolf

Wolf

Hello, can anyone give me information on the following:
1) continued use of SmartVest or any airway clearance vest after having spinal compression fractures
2) use of the new Volara system by Hillrom
Has anyone switched from SmartVest to Volara system

5 days ago

  • NewestOldest
  • Ksmiles123Wolf, Hello! I would suggest speaking with your surgeon, your physical therapist. Spinal compression fractures are serious and must be treated by the experts. Would hand held devices such as the aerobica and normal saline nebulizers be suitable for you at this time? 5 days ago
  • Alyssa DittnerA smart vest can provide external oscillation. It's important to consult your healthcare provider to determine if it's suitable for use if you have compression fractures. The Volara system offers oscillation and positive pressure therapy to help mobilize mucus from the inside. It can be a great option as it's capable of delivering nebulized medication while simultaneously providing mucus mobilization therapy.5 days ago
Ksmiles123

Ksmiles123

Hello! Below is a health infographic from John Hopkins on preventative strategies to lessen the chances of getting the flu, RSV, and Covid. Symptoms and treatment suggestions are included in the article: https://www.hopkinsmedicine.org/health/conditions-and-diseases/coronavirus/flu-prevention-and-coronavirus-infographic

6 days ago

Ksmiles123

Ksmiles123Hello! Symptoms of the flu, RSV, the common cold, allergies and Covid 19 have several similar symptoms. The infographic below differentiates them. It is best to get the nasal swab at your primary care providerโ€™s office if you are uncertain about what exactly is going on. The right diagnosis will lead to the right treatment.

1 week ago

ppatty

ppatty

Hello.  I was diagnosed with bronchiectasis over 20 years ago.  Pseudomonas and MAC were discovered 4/2023.  My Pulmonologist sent me to a specialist. They decided to not treat the MAC at this time and sent me to ID to treat the Pseudomonas.  They say the PA is colonized and the goal is to keep it at bay.  Because they want to keep certain meds in my arsenal for the MAC, I was put on inhaled Cayston 28 days on/28 days off.  The Cayston was WORSE than any exacerbation I have ever had.  Just tried the 3rd round.  It went badly and are going to discontinue.  Has anyone had a reaction to Cayston?  I think the next drug they want to try is Colistin.  Looking for any advice with similar situation.  My gut doesn't feel right with this call.  To treat or not to treat!?  Just looking for some/any advice.  Thank you! 

1 week ago

  • NewestOldestClick to View All Comments5 comment(s)
  • ppattyYes I did use an albuterol inhaler before.  Thank you1 week ago
  • Ksmiles123K. Just thought I would ask. Did they mention tobramycin? I did not have any difficulty with this drug. 1 week ago
  • Harper I was diagnosed with pseudomonas for about two years. I was so devastated when i find out about it, and my doctor prescribed me some medicine which i think was going to be helpful surprisingly the medicine didn't work for me. At some point i gave up than comes one faithful day i came across Dr Oshuku a Herbalist then i contacted him and told him my problem and he said to me not to worry and his natural herbs and roots will cure me, so i have to give it a try and see the outcome because i have spend so me on medications. He actually did prepare me the medicine with inspections how to use it and i did exactly what he told me. After two weeks of using the medicine i went for checkup my doctor did some tests behold i was negative. I don't normally the type that write review but i had to share this because i know a lot people at there are feedup looking for help kindly contact Dr Oshuku via email. droshuku@gmail.com13 hours ago
Ksmiles123

Ksmiles123

The flu, common colds, RSV, allergies, Covid 19 symptoms overlap and it can be challenging to correctly diagnose what exactly is going on. Below is a review of the common cold: https://www.mayoclinic.org/diseases-conditions/common-cold/symptoms-causes/syc-20351605

1 week ago

Granwalks

Granwalks

I've had bronchiectasis for years and have recently been diagnosed with MAC and placed on the Big 3 meds. Whew! I'm glad to discover this online support group.

1 week ago

PShem

PShem

I'm looking for a specialist/pulmonologist in Chicago area for my husband. Anyone out there have a recommendation.

1 week ago

Ksmiles123

Ksmiles123Hello! Have you received your RSV vaccination? This vaccine does not have to be repeated every year like the flu vaccine. Below is information on the RSV vaccination: https://www.cdc.gov/rsv/vaccines/older-adults.html?s_cid=SEM.MS:PAI:RG_AO_MS_TM_A18_RSV-Seniors-Brd:should%20seniors%20get%20rsv%20vaccine:SEM00135&utm_id=SEM.MS:PAI:RG_AO_MS_TM_A18_RSV-Seniors-Brd:should%20seniors%20get%20rsv%20vaccine:SEM00135

Vaccines for Older Adults

Information on vaccines to protect adults ages 60 and older against RSV.

1 week ago

Brittany Irish COPDF

Brittany Irish COPDFToday is World Mental Health Day.
 
Feelings of anxiety, shock, denial, anger and fear of the unknown after being diagnosed with a chronic disease are common. Learn some ways you can focus on your mental health on our blog: https://copdf.co/OkayNotOkay

1 week ago

Tara COPDF

Tara COPDFHi, BronchandNTM360social community! My name is Tara, I work with marketing for the COPD Foundation. I wanted to invite you all to join us to Lace Up for Lungs with the COPD Foundation this year! Every year starting in October, the COPD Foundation community comes together to raise awareness of chronic lung disease, share education about the importance of early diagnosis, and advocate for increased investment in resources through shared activities we do together.

We are excited to be growing the awareness activities from prior years to include lighting up buildings in orange, inspiring community involvement through letters to the editor and tabling events, getting active, wearing orange, & more. Each week, we will be sharing highlights from our community with photos of your activities in a weekly e-mail. Those who participate will also be entered in giveaways for Lace Up for Lungs prizes. We would love to highlight those of you in the bronchiectasis & NTM lung disease community!

Together, we hope to meet our ambitious goal of working together to achieve 1,000 awareness-building activities throughout our extended lung health community! Will you help us get there? To say โ€œIโ€™m in!โ€ to get your Lace Up for Lungs toolkit, sign up here: https://copdf.co/laceup-signup

1 week ago

Ksmiles123

Ksmiles123

A reminder to schedule your flu vaccination of you havenโ€™t already scheduled it. It takes a few weeks for the vaccine to be fully effective. The link below from National Jewish Health reviews the different types of vaccines: https://www.nationaljewish.org/education/health-information/infographics/which-flu-vaccine-is-right-for-you

1 week ago

marsrocket

marsrocketHere's a flower I spotted yesterday after picking up meds from a pharmacy. Went for a walk with my rollator since it was a sunny day. 

1 week ago

Kandy

Kandyanswered the question Do you currently use oxygen?

I use oxygen been 27 yrs, yes that correct
laff4evr also answered the question laff4evr also answered the question

1 week ago

Kandy

Kandyanswered the question Do you own a pulse oximeter?

i have 3 pulse oximeters
Ksmiles123Loremlaff4evr also answered the question Ksmiles123and 2 others also answered the question

1 week ago

GratitudeGen

GratitudeGen

Hello ! I just joined here. I was recently diagnosed this year with mild Bronchiectasis & NTM. I have no symptoms and no sputum induction. My Pulmonologist has followed my CT's for months. I am not improving and the latest CT displayed what my Doc is calling a potential cavity- She is concerned it may break open and spread. I am considering the Big 3 antibiotics but am feeling unsure about how the side affects & the meds will affect my whole body health, my gut and a future potential to be resistant. Is there anyone out there that has any similarities to share? Thank you !

1 week ago

  • NewestOldestClick to View All Comments5 comment(s)
  • Ksmiles123Hello! You are most welcome.  Hopefully, monitoring your symptoms and a repeat CAT scan will guide you in making the best decision.  I agree with your concern about the side effects of the 3 antibiotics on your gut health, mental health,  hearing, sight issues, etc.  If you avoid taking the drugs and monitor for a short time, that is okay.
    However, please do report any increased symptoms to your pulmonologist. I am just concerned that your doctor feels that your current mycobacterial load may turn into a cavity.  Have you thought about seeking a 2nd opinion?  Is your pulmonologist a NTM expert? Many have cleared an NTM/ MAC infection with the big 3 meds. Some individuals experience a relapse, some do not.  I wish you the best with your decision.  Having a new diagnosis of a rare disease is overwhelming .1 week ago
  • JohnTHiโ€ฏ@@GratitudeGen. Thank you for joining our community! From the information you have provided us, your situation is very serious. A cavity is not to be bargained with. 
    We have assistance available for you in many forms. In addition to the community support you receive here on BronchiectasisandNTM360, you can call one of our Patient Ambassadors directly by phone atโ€ฏ(833) 411-5864. Our Ambassadors are real live patients with experiences similar to yours and understand what you are going through.โ€ฏ You can alsoโ€ฏemail us atโ€ฏinfo@bronchiectasisandntm360.orgโ€ฏto get more information about how to proceed.โ€ฏ Our Ambassadors canโ€™t provide medical advice but may be able to assist you with additional information and resources aboutโ€ฏcavities, treatment and the best hospitals for bronchiectasis and NTM.1 week ago
  • KandyHello wanr to welcome you to our community. 1 week ago
JennyJM

JennyJM

Hi everyone! Happy to welcome October with all of you. Sending positive thoughts and vibes to all of those effected by hurricane Helene and Milton. Stay safe!

1 week ago

Alyssa Dittner

Alyssa DittnerSending prayer for Florida during this hurricane. Your bronchiectasis and NTM family will be thinking of you and your community. Stay safe!

1 week ago

DianeD

DianeD

Hello everyone,


Have a question for whom ever can answer..
How can you tell if your have a Reoccurrence ?
Been off all my mess now for almost 4months but Ive been noticing that when I walk alittle to fast I become very short winded
..never had that before even when I was on tje meds for that whole year.

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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