BronchandNTM360social welcomes new member Jbjb who joins 3,613 current members of our community. Weโ€™re glad you're here!

nycjule

nycjule

Good afternoon,
Been silent as I am recovering from a right lower lobe resection to remove a cavitary. Bumpy road with an allergic reaction to the Cefoxitin which has now been switched to Imipenum. It is just over a month since starting the three antibiotic regiment which is now omodacycline, imipenum, and amikaycin. Feeling drained and trying to keep an appetite. 
Any suggestions on diet or best practices for administration are welcome and most appreciated.
Julie from New York

6 hours ago

Jbjb

Jbjb

Hello All,   I am a 62 yr old woman.  I was diagnosed with Mac and bronchiectasis 2 1/2 years ago.  I was treated for 12 months with 3 antibiotics in 2022. I have been sick consistently since sept 1 even did a 5 day stint Hospital stay for pneumonia.  I get sick take antibiotics get well for 10 days then Iโ€™m sick again. I havenโ€™t really been given any instructions or guidelines to improve my situation. I am new on this chat and wander if anyone has any suggestions. Thanks

13 hours ago

  • Ksmiles123JbJb,
    Hello! Welcome to the site. Did they do a sputum culture with an AFB test in September? If so, Do you know the results? Regular antibiotics will not be able to get rid of a recurring NTM infection if it is that. Is your pulmonologist well experienced with NTM patients? 11 hours ago
JenniferLayne

JenniferLayne

54 yo female having bronchoscopy Monday but has some sort of chronic lung infection that dr suspects is NTM. Any advice or help is appreciated! 

1 day ago

Ksmiles123

Ksmiles123https://www.linkedin.com/pulse/time-now-bring-mental-health-mainstream-roi-shternin--jhwae?trk=newsletter

The Time is Now to Bring Mental Health into the Mainstream

new newsletter article arguing why we need to make mental healthcare as accessible as visiting your general practitioner. Read why the time is now to bring mental health into the mainstream and end the stigma around seeking help. #mentalhealth #mentalhealthmatters #mentalhealthawareness …

1 day ago

laff4evr

laff4evr

Howdy Lung Buddies,

When you dream... do you have healthy lungs or do you experience breathlessness ?

1 day ago

  • NewestOldestClick to View All Comments5 comment(s)
  • Ksmiles123My dreams are all over the placeโ€ฆ lol. Most of my dreams are stories  before my diagnosis. 1 day ago
  • laff4evr
    I'm a dreamer... meaning I dream almost every night.
    With the exception of two, I'm always healthy lung'd.

    1. June 21, 2015 = First dream ever of breathlessness while doing something.
    I got out of breath climbing over a fence.

    2. September 20, 2020 = Being severely out of breath; a ball rolled near
    me and I didn't bend down to pick it up because I didn't have the air.21 hours ago
  • Ksmiles123Laff4ever,
    Interesting dreams. I would love to learn more about why we dream about what we dream aboutโ€ฆ
    11 hours ago
Ksmiles123

Ksmiles123Hello!  Happy December 1st! We will be focusing on mental health, goal setting and medical issues that frequently accompany Bronchiectasis and NTM individuals throughout the month.
We will also review the biggest news of Bronchiectasis/ NTM in 2023. 

2 days ago

laff4evr

laff4evranswered the question Are you taking Probiotics regularly?

Yes
Ksmiles123Kandy also answered the question Ksmiles123and 1 other also answered the question

2 days ago

DianeD

DianeD

So if Im getting a cold but have to give a sputum sample will the cold effect that sample and the results?..just wondering because my last 3 have all been negative.


So basically you mean I have to continue usuing Spring water for everything, being careful with my showers... and dressed like a biohazard person if I want to transplant a plant?


Can I use a cool mist humidifier in the house?
Its horrible since the heat has been turned on

3 days ago

  • Ksmiles123Diane,
    No, your cold should not affect the results of the mycobacterium results- they will either be present or not.


    Yes, it is important to take preventative measures to lessen the chance of reoccurrence. We cannot do everything perfectly nor live in a bubble but we must choose what we can do or not do.


    Humidifiers are not recommended for patients with NTM. Opening a window a crack, if possible is one option to lessen the dryness. Putting a pot of water under the bed or near the bed is another option. Using nasal saline spray or doing nasal washes is another way to lessen the dryness in your nasal passages. 3 days ago
DianeD

DianeD

Hello Everyone,


So another day another weird issue..has anyone ever had what I think are cold sores?
But its above and below the lip seems to be getting bigger no weird blisters but the skin is very red and and if I dont keep Blistex in it the skin gets dry and flaky..going for my 4th bloodwork tomorrow think Ill gave them ck it.out...never ever had anything like that before!


Also please tell me when this is over and done with...do we still need to be so careful with the water and soil and life in general?
Will we still need to be constantly tested?

3 days ago

Ksmiles123

Ksmiles123

How are you doing today? Were you able to get some physical activity in throughout the month with the inspiration from the Lace Up for Lungs campaign? Tis hard to believe that we are at the end of November.:) 

3 days ago

Ksmiles123

Ksmiles123answered the question retractable tubing device for long tubing on an oxygen concentrator

Interesting piece of equipment. Thank you for finding this information.
360Coach Brandon ChristinaH also answered the question 360Coach Brandon and 1 other also answered the question

4 days ago

ChristinaH

ChristinaHanswered the question Are you a caregiver?

Amanda Atkinson MSN, RN always knocks these posts out of the park. A great read!

4 days ago

Ksmiles123

Ksmiles123asked the question: Are you a caregiver?

Hello! Below is an excellent, heartfelt article written by Amanda Atkinson, RN,MS on Caregiving. Multiple links to resources are included in the article. https://www.copdfoundation.org/COPD360social/Community/Questions-and-Answers/Checking-In-On-Those …

4 days ago

Ksmiles123

Ksmiles123asked the question: Are you taking Probiotics regularly?

The link below is the list of the top probiotics in 2023: https://www.healthline.com/nutrition/best-probiotic-supplement

5 days ago

marsrocket

marsrocketIf you live in an area with chilly temperatures, please take extra precautions to protect your lungs. Here's a short article on how cols temperatures can affect people with chronic lung diseases. Stay warm!

https://www.mayoclinichealthsystem.org/hometown-health/speaking-of-health/is-the-extreme-cold-bad-for-your-lungs

Cold weather and your lungs

Learn how extremely cold temperatures affect the lungs and what you can do to protect yourself when outdoors.

5 days ago

360Coach Brandon

360Coach Brandon

Have you received your flu shot yet? With the upcoming holidays, it's a great opportunity to add an extra layer of protection against the flu.

It typically takes about two weeks post-vaccination for the body to produce antibodies that guard against influenza infection. Stay safe and consider discussing this further with your doctor or pharmacist for additional information.

5 days ago

Ksmiles123

Ksmiles123Hello! Have you been tested for Alpha One Antitrypsin Deficiency? The link below offers information on free at home testing: https://alpha1.org/about-alpha-1-testing-diagnosis/

Testing & Diagnosis - Alpha-1 Foundation

Alpha-1 Antitrypsin (AAT) can be diagnosed with a simple blood test.

6 days ago

ChristinaH

ChristinaHanswered the question does anyone know a specialist in equipment for oxygen machines in New York City

Hi caarmela! We have a monthly OxyTalk support group where you can get all your questions answered from the "pros" and others that use oxygen everyday. I'll link the meeting below! Join us for Oxytalk: A group for those on oxygen therapy. Send any …
Ksmiles123 also answered the question Ksmiles123 also answered the question

6 days ago

JohnT

JohnTanswered the question Drug Tolerance

Hi Woods, I have taken Clofazimine and Amikacin multiple times. If you would like more information about them, please call me on our Information Line at 833-411-5864.

1 week ago

Woods

Woodsasked the question: Drug Tolerance

How have people tolerated Clofazimine (Lamprene) and/or Amikacin?

1 week ago

Woods

Woods

I would appreciate feedback on how anyone has tolerated Clofazimine (Lamprene) and Amikacin. 

1 week ago

caarmela

caarmelaasked the question: does anyone know a specialist in equipment for oxygen machines in New York City

I need help in learning how to use the oxygen tanks in case of an emergency, in cleaning canulas and tubing, in finding aids to help me manage the long tubing and getting around the house, and advice on what other equipment to buy for help with using my …

1 week ago

caarmela

caarmelaasked the question: retractable tubing device for long tubing on an oxygen concentrator

Has anyone used a retractable tubing device for long tubing connected to their oxygen machine, so that I do not trip over it?

1 week ago

caarmela

caarmelaanswered the question tyvaso dpi

I did, but they have income limitations. My understanding is that they do not give assistance for anyone whose income is over 500 percent of the poverty level which is about $73,000 for a single person.
Ksmiles123 also answered the question Ksmiles123 also answered the question

1 week ago

Ksmiles123

Ksmiles123

How are you doing today after the Thanksgiving holiday? Any special items on your Black Friday shopping list?

1 week ago

Ksmiles123

Ksmiles123Enjoy your Thanksgiving Holiday in whatever way works best for you. :) 

1 week ago

Kandy

KandyWant to wish everyone a blessed Thanksgiving!  I hope your can be with family for the holiday.  We have much to be thankful for.  Stay safe and well. 

1 week ago

Kandy

Kandy

1 week ago

laff4evr

laff4evr

So Far It's Taken Over Four Hours To Stuff The Turkey...
It Keeps Clawing And Pecking At Me.

1 week ago

Ksmiles123

Ksmiles123Hello! Below is a link on the science of gratitude. We may not have it all but it is important to be grateful for what we do have. Wishing you the best with your holiday preparations.https://positivepsychology.com/neuroscience-of-gratitude/

The Neuroscience of Gratitude and Effects on the Brain

Learn about the neuroscience of gratitude, and its effect on anxiety and grief.

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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