Kandy

Kandyvoted on Living with Bronchiectasis – An Opportunity to Tell Your Story

Gave a thumbs up for a blog post!

4 hours ago

Kandy

Kandyvoted on COPD and Bronchiectasis – Making the connection

Gave a thumbs up for a blog post!

4 hours ago

Ruth T.

Ruth T.voted on COPD and Bronchiectasis – Making the connection

Gave a thumbs up for a blog post!

6 hours ago

Ruth T.

Ruth T.voted on Living with Bronchiectasis – An Opportunity to Tell Your Story

Gave a thumbs up for a blog post!

6 hours ago

Ruth T.

Ruth T.voted on Goal Setting and the NTM/Bronchiectasis Patient

Gave a thumbs up for a blog post!

6 hours ago

marsrocket

marsrocket

things have gotten a bit messy. apparently the lab can't do sensitivity testing since the m. fortuitum stopped growing. instead of doing a new sputum culture, my ID doc wants to do a bronchoscopy, but my pulmonologist previously said I should avoid that procedure unless absolutely necessary because of pneumothorax in the past. ID doc not willing to prescribe antibiotics without sensitivity testing in case I have developed a resistance. considering getting a second opinion from my original ID doc, which could be awkward since she works for a different hospital system. a super nasty cough is my only symptom. Argh! 

13 hours ago

  • NewestOldestClick to View All Comments4 comment(s)
  • Ksmiles123It is alot of work being a “ patient “, but we must push ourselves to keep on keeping on until we get the results/ treatment we need. Good luck with your next steps.10 hours ago
  • marsrocketThank again. You are right, sometimes we need to be assertive in finding treatments or doctors that are the right fit. And not worry about hurt feelings if we get a second opinions, lol. To me, a second sputum sample sounded perfectly reasonable before considering a bronchoscopy.10 hours ago
  • Ksmiles123Same here. Spitting in a cup is much less invasive than going under anesthesia for a bronchoscopy. I used to be concerned about the feelings of a physician if I decided to look elsewhere- I no longer feel this way. You must follow your gut, do what is best for your own health.8 hours ago
JohnT

JohnTanswered the question Advanced Lung and Bronchial Support supplement by Dr. Sinatra, any experience/thoughts?

Hi Sumter, I agree that you should avoid unapproved treatments and review your supplements with your health care providers.

13 hours ago

Sheila Brown

Sheila Brown

 Hi I am new to this board and it is so nice to meet people who understand the condition

19 hours ago

Vinny M

Vinny Mvoted on Living with Bronchiectasis – An Opportunity to Tell Your Story

Gave a thumbs up for a blog post!

1 day ago

Linda Lou

Linda Lou

Hi.  I'm new to this sight.  I started Arikayce 2-1/2 weeks ago and my breathing has gotten worse since then.  Has anyone else had this problem? and did it get better as you got used to the medication?

1 day ago

marsrocket

marsrocketDay 12. Still waiting on antibiotic susceptibility testing results so the ID doc can put together a plan. And coughing. And waiting some more.

1 day ago

Learn2fly

Learn2fly

On week 3 of antibiotic treatment for NTM.  Trying to eliminate a rash and itching from meds. Has anyone experienced this?

2 days ago

  • NewestOldestClick to View All Comments4 comment(s)
  • Ksmiles123Learn to fly,
    I agree w Christine to inform your MD of the rash. Please let us know what your MD suggests. Ordinarily, a mild hydro or tone or Benadryl topical ointment would help the itching. Good luck.1 day ago
  • Coughing GirlDefinitely report this to your doctor to make sure this is not an allergic reaction that could progress to something more serious.  For the rash, you might try Voltaren ointment, which would be an off-label use since it is generally used for arthritis.  But I discovered quite by accident that it was the only thing that would bring down my hives and itching when I had a long-term bout with hives several years ago.  Nothing else worked, including the topical steroids my doctors were prescribing.   Voltaren is an anti-inflammatory, so I think it worked for me by reducing the inflammation in my skin.  (Ibuprofen also helped, probably for the same reason.)    It used to be Rx but is now OTC, available at drug stores and supermarkets.1 day ago
  • Ksmiles123I have never used Voltaren. I will keep it in mind if I ever need it. 1 day ago
Mandi

Mandi

😊 Feeling a bit fatigued but breathing well!

2 days ago

TimD

TimDvoted on My Journey with Lung Disease: Family Connection

Gave a thumbs up for a blog post!

2 days ago

WalshKTF

WalshKTFvoted on My Journey with Lung Disease: Referral and Initial Treatment

Gave a thumbs up for a blog post!

2 days ago

WalshKTF

WalshKTFvoted on My Journey with Lung Disease: Family Connection

Gave a thumbs up for a blog post!

2 days ago

JD

JDvoted on My Journey with Lung Disease: Family Connection

Gave a thumbs up for a blog post!

2 days ago

Ksmiles123

Ksmiles123Hello! Are you using your airway clearance devices? It is especially important to use these devices throughout the peak of the flu season. Which device are you currently using? Below is information on the aerobica: https://www.nationaljewish.org/conditions/medications/airway-clearance-techniques-devices/using-the-aerobika

2 days ago

  • NewestOldestClick to View All Comments5 comment(s)
  • Ksmiles123Hello! I used the acapella and the best in the beginning. I then used the flute which was very easy to clean- you just rinse it, replace the inner piece regularly. I now use the aerobica- needed a change, lol. We must motivate ourselves to do this everyday. Many docs compare the necessity of doing this to flossing our teeth daily. 2 days ago
  • marsrocketWhen I learned that one of the possible benefits of aggressive airway clearance is reduced bacteria counts, it became a daily habit. Now if i could only remember to floss...2 days ago
  • Ksmiles123Lol. Many of us do not have the energy to floss at night. Perhaps, setting a new habit of doing both, airway clearance and flossing back to back would help. 2 days ago
Kandy

Kandyvoted on My Journey with Lung Disease: Family Connection

Gave a thumbs up for a blog post!

3 days ago

JohnT

JohnTanswered the question Covid Vaccine - Life After

Hi Christina, Great question. I know some people had significant reactions to the vaccine, but for me, it was just like getting any other shot in the arm. I was a little sore and a little tired, but other than that, I was ok. I have felt better about …
Ksmiles123RoseHIElaine F.L.and 6 others also answered the question Ksmiles123and 8 others also answered the question

3 days ago

JohnT

JohnTanswered the question Does a sputum sample have to be completed in the morning?

Hi Franny, I just wanted to check in to see how you are doing. I agree with Katie that sputum samples don't have to be done in the morning, but it works for most people because we generally have a collection of sputum in our system in the morning and we …
Ksmiles123KandyFranny also answered the question Ksmiles123and 2 others also answered the question

3 days ago

JohnT

JohnTanswered the question Has anyone used Acapella therapy?

I have used the Acapella and the Aerobika. I prefer the Aerobika because I can use it inline with my nebulizer and accomplish two goals at the same time.
Ksmiles123DAJlaff4evrand 1 other also answered the question Ksmiles123and 3 others also answered the question

3 days ago

MDLC

MDLC

Feeling good…going to work soon.

4 days ago

Tony

Tony

Hello precious Bronchiectasis sufferers I would like to tell you of my battle with Bronchiectasis and my complete recovery! It started in 2008 when i had a flu shot in October I immediately went hoarse for nearly 2 months and then I started coughing and coughing. My pulmonologist said I had asthma and put me on about half a dozen different inhalers over a period of 9 months all to no avail,  when I asked for a second opinion I was sent to a specialist in Seattle who told me that I did not have asthma but I did have Bronchiectasis and was started on a course of daily Azithromycin and Prednisone. This regimen went on for 13 years I wasn't getting any better but gradually getting worse. Last may I went to visit my fiancee in Souther Utah and because i was so weak from constant coughing she made me an appointment with her primary care physician (a regular GP ) he put on a course of Mucinex for 5 days and he also put me on an inhaler BREZTRI taking 2 puffs twice a day, on the second day using the Breztri inhaler I felt much, much better, my lungs were clearing up quickly, by the third day I stopped coughing completely and my lungs were clear of mucus. It felt like a miracle to me and I am happy to say that I no longer take any medications for my Bronchiectasis except the Breztri inhaler. I write this hoping that my story may benefit somebody out there. Wishing you all the best of health. I used to be on a Bronchiectasis chat board for a number of months years ago and can't for the life of me remember if it was this one or not

5 days ago

Ksmiles123

Ksmiles123Hello! Below is a great article on Women and Bronchiectasis:https://www.copdfoundation.org/COPD360social/Community/COPD-Digest/Article/1554/Women-and-Bronchiectasis.aspx

Women and Bronchiectasis

As we celebrate International Women’s Day, we turn our attention to how bronchiectasis uniquely affects women and the impact that has on gender equality in healthcare and what can be done. As we noted in a previous blog post, bronchiectasis is often difficult to diagnose because it can …

5 days ago

WalshKTF

WalshKTFvoted on Living with Bronchiectasis – An Opportunity to Tell Your Story

Gave a thumbs up for a blog post!

5 days ago

WalshKTF

WalshKTFvoted on What is an Adverse Drug Reaction?

Gave a thumbs up for a blog post!

5 days ago

Ksmiles123

Ksmiles123

Hello! Have you ordered your free at home Covid tests? https://www.covidtests.gov/

6 days 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.


NTM Infographic 1
NTM Infographic 2
NTM Infographic 3
NTM Infographic 4