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David D

David D

I just discovered this group a few minutes ago.  I was first diagnosed with Bronchiectatis in 1972, have hospitalized for pneumonia more times than I can remember and had been on inhalers for decades.  I am now drug free (except for vitamin supplements), stopped using inhalers years ago, and have not been hospitalized for pneumonia for over twenty years.


I rely on postural drainage, exercise, plenty of sleep, and good nutrition to stay as healthy as possible.  But whenever I get a cold, it goes straight to pneumonia and I have to take a course of antibiotics to get rid of the pneumonia.  That now seems to happen about once or twice a year.

15 hours ago

  • NewestOldestClick to View All Comments7 comment(s)
  • laff4evr
    Greetings David D6 hours ago
  • David DIt has taken me multiple decades to get my Bronchiectasis under control. On good days I don't cough a whole lot and my mucus is medium yellow. But I still usually need to do some postural drainage, which, for me, consists of bending over, doing expeller breathing and coughing, which usually clears my lung for at least 30 seconds๐Ÿ˜‚.  On not so good days my mucus is bright yellow and I cough quite a bit. Since I am retired, I am at home a lot during the day and can often do my postural drainage without social awkwardness. On really bad days, those once or twice a year episodes, which I call "my relapses," I get super congested, begin to feel achy all over, & bring up bright yellow or green mucus. That's when I know I need to start a course of antibiotics. I always take antibiotics with me when I travel, just in case I have a relapse.

    But even on good days, I usually cough up a lot of mucus when I lay down to sleep, which is really annoying, but I can't fall asleep unless my lungs have cleared up a bit.

    Sometime in my 40's I decided that the best way for me to avoid relapses, which I was having every couple of months, was to be aerobically fit. And while I can't jog any more because, at 81, I have arthritis in one of my knees, I walk briskly between 2.5 and 5 miles a day, and take exercise classes to try to keep up my stamina, muscle tone and balance.

    My own experience has convinced me that my bronchiectasis does not allow me to be just OK.  I'm either going to feel sickly a lot of the time or be very fit, so I have made it a priority to stay fit.
    4 hours ago
  • David DP.S.  Thank you all for your kind and welcoming words.  It's nice to be able to share with people who have the same condition.4 hours ago
laff4evr

laff4evrNational Humor Month - Day 27

22 hours ago

Ksmiles123

Ksmiles123

Hello! It is so nice to have warmer temperatures and longer days.
How are you feeling today?  Any interesting plans for the weekend?

1 day ago

laff4evr

laff4evrNational Humor Month - Day 26

1 day ago

marsrocket

marsrocketHappy National DNA Day, friends. 

2 days ago

laff4evr

laff4evrHollywood finally made a follow-up to You've Got Mail.

In the sequel, both are charged with selling counterfeit books.

2 days ago

DianeD

DianeD

One more question...
If this NTM is environmental either by water or soil and it can be cleared by medication after the whole process is done and over why do they still say you have a lung disease if it has all been cleared?
Why should we also mot wash our hair in the shower?

3 days ago

DianeD

DianeD

Hello everyone,  thought I'd drop a few lines to keep you in the loop on my progress I did my 6th and hopefully my last blood work and culture the first of April blood work was all good culture is still pending but the last five have all been negative so fingers crossed along with lots of prayers this last one will be also but I do have a couple questions for anyone out there.
If we're fortunate enough to be able to stop the meds at the end of our one year mark do they stop them all at once or do they wean you off of them?
I would happen to think they would wean you off of them like they did when they started you one pill at a time might be kind of a shock to the system to abruptly stop taking all three antibiotics at once.
Also how long does it usually take for all those meds to get back out of your system?

3 days ago

Ksmiles123

Ksmiles123Hello! Below is a great article on
Finding Your Breath during Stressful Times, written by Kristen Szymonik, RT https://www.copdfoundation.org/COPD360social/Community/Questions-and-Answers/Just-Breathe-Finding-Your-Breath-During-Stressful-Times.aspx

Just Breathe: Finding Your Breath During Stressful Times

How many times have you been told to โ€œtake a deep breathโ€ or โ€œjust breatheโ€ when youโ€™re stressed? While these people mean well, they often donโ€™t …

3 days ago

laff4evr

laff4evrNational Humor Month - Day 24

3 days ago

Ksmiles123

Ksmiles123

Are you traveling ๐Ÿงณ in the near future?The link below from the CDC offers some travel tips for people with chronic health conditions: https://wwwnc.cdc.gov/travel/page/chronic-illnesses

4 days ago

laff4evr

laff4evrNational Humor Month - Day 23

4 days ago

Kandy

KandyHappy Earth Day everyone!!

5 days ago

BethNDavid

BethNDavid

Hello Everyone, we are trying to get Tobramycin for inhalation for my husband. The insurance telling us the copay is almost $500 per month (that is with the Teva brand discount). Is there a way to get this through Canada, we can possibly go to Canada if we have to

5 days ago

marsrocket

marsrocket

5 days ago

laff4evr

laff4evrNational Humor Month - Day 22

I made a spelling error on a purchase order.

My fresh fruit store now sells Chiquita bandanas.


5 days ago

laff4evr

laff4evrhttps://www.youtube.com/watch?v=Xsp4DqGpzA0

Some members may be housebound due to health reasons.
This is something to watch if you enjoy fireworks.
There are a number of events leading up to The Kentucky Derby.
One of them is called Thunder Over Louisville.
It's North America's largest firework display.
They are launched from barges and a bridge on the Ohio River.
The sound kicks in at the 18 second mark.
There's an interlude from 17:30 to 18:40 before the finale.

6 days ago

laff4evr

laff4evrNational Humor Month Day 21

6 days ago

Storyteller

Storyteller

I am appreciate all your words of encouragement and hope, Katie. Just feels like the more I do for my lungs , the more disappointed I am with the results. 

1 week ago

  • Ksmiles123Many of us have been in your shoes ๐Ÿ‘Ÿ! Please hold onto hope- positive energy assists our bodies to heal.
    Every little step we take , over time may contribute to healing. 
    For example, we do not see / feel the results of airway clearance immediately but it actually lessens the chance of getting recurring infections or present infections from getting worse. One day at a time. 6 days ago
Storyteller

Storyteller

Needing some support . Feeling really nervous about my lungs  and the recommended treatment with azithromycin.   I know many people have had to endure the big 3, surgeries , more than this.
But I donโ€™t do well on any antibiotics and was told couldnโ€™t take zofran for the nausea with it.
feeling so discouraged ..
















1 week ago

  • NewestOldestClick to View All Comments13 comment(s)
  • StorytellerI have had numerous bouts with b.cepacia. Hard to tell when it will show up.5 days ago
  • StorytellerI do the saline but have almost comstant scratchy throat.5 days ago
  • Ksmiles123Saline does irritate the throat of many individuals. Do you have a favorite throat honey lozenger to take after you nebulize? 4 days ago
Ksmiles123

Ksmiles123commented onCoping with NTM/Bronchiectasis โ€“ Your Chronic Illness

 Storyteller,More research is being conducted in this disease area over the past 8 years than had been previously done in decades.Airway clearance, infection control precautions, stress management, healthy eating, adequate sleep will assist you in the...

1 week ago

Storyteller

Storytellercommented onCoping with NTM/Bronchiectasis โ€“ Your Chronic Illness

 Thank you, Katie, for your bravery and honesty in describing your initial response to your initial diagnosis. I have several chronic illnesses, including smoldering multiple myeloma. I am also a breast cancer survivor. The disease that scares me the...

1 week ago

Storyteller

Storyteller

Have bronchiecstasis sufferers who are on azithromycin 250 mgs 3 times weekly since improvements in their pulmonary function ?
This has been suggested for me โ€ฆ.actually, 500 mgs but as all antibiotics nauseate me , I would prefer to start with 250 mgs. ?
Still waiting for brensocatib and other โ€œbreakthrough โ€œ drugs to finally breakthrough !

1 week ago

JohnT

JohnTanswered the question Does anyone have a top (or top 3) recommendation(s) for getting a second opinion or consult?

Hi Chrism, I am sorry to hear that you went a long time without a proper diagnosis, but it is very typical in today's world. We are working on ways to get that diagnosis faster. Stay tuned. If you will call us at 833-411-5864, I can review the best …
Ksmiles123 also answered the question Ksmiles123 also answered the question

1 week ago

Chrism

Chrismasked the question: Does anyone have a top (or top 3) recommendation(s) for getting a second opinion or consult?

I was diagnosed 11/22 with NTM. In 2019, my PCP missed a bronchiectasis diagnosis from a coronary calcium CT scan. I went 3-1/2 years untreated & without airway clearance practices, no sputum til 2022. I had a bilobectomy in 5/23 and in 9/23 started …

1 week ago

Ksmiles123

Ksmiles123

Having and maintaining a sense of humor throughout challenging times may lessen the stress with the everyday tasks that we may encounter.
April is National Humor Month.
Below is the timeline of National Humor Events: 
Present ImpactWorld Laughter Day celebrations are organized by Certified Laughter Leaders in a variety of cities throughout America.
1999Comedy TourThe World Laughter Tour launched on May 27, 1999 in Columbus, Ohio. It was created by founder Steve Wilson.
April 1976National Humor Month BeginningLarry Wilde starts the tradition of celebrating humor.
1975The beginning of SNLThe first season of Saturday Night Live aired on October 11, 1975.

1 week ago

Robbie

Robbie

How do I access an online community?

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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