Made Pramana

Made Pramanavoted on Coronavirus and the NTM Patient

Gave a thumbs up for a blog post!

2 hours ago

Ksmiles123

Ksmiles123Hello! Below is a story of HOPE and the Corona Virus :https://www.express.co.uk/news/uk/1260673/Coronavirus-cystic-fibrosis-covid19-latest-news-lung-disease

10 hours ago

Kelly Murphy

Kelly Murphycommented onMy Journey with Lung Disease: Referral and Initial Treatment

 Wow. I appreciate your sharing and your example of persistence and courage. I'm sure everyone reading this wishes you well. Thank you, John....

17 hours ago

Gretchen

Gretchenadded a new article Coronavirus and the NTM Patient

Do you find yourself living in great fear since the outbreak of the corona virus?

Fear can paralyze us and create anxiety when we feel out of control. But we can also find an opportunity to practice letting go of the control we think we have. Awareness of our limits in the here and now is the antidote. I believe that we must accept the things we cannot change. And, we must change the things we can. For example, infection-control procedures in your home, getting involved in diversional...

22 hours ago

warhero

warhero

worried and getting anxious,about all around me,tend to  feel illish when im ok i think

23 hours ago

Ksmiles123

Ksmiles123Hello! The video below is in grocery shopping safety.https://m.youtube.com/watch?v=sjDuwc9KBps&feature=youtu.be

1 day ago

Elevensprocket

Elevensprocket

Without the need to be in the office everyday, I have doubled the amount of cycling I do this time of year. I think as a result of that (and I have to admit, probably a recent change of medication resulting from the price droppingโ€” my insurance would not pay for the full dosage my doctor prescribed) I feel great. Restrictions in my area to do not prohibit solo bicycling, so I have been out there almost every day for the last ten days putting in ten to twenty miles or more. I worry that the meds I take are currently said to exacerbate Covid-19, so I want my lungs as strong as possible when I encounter the bug. 

1 day ago

Ksmiles123

Ksmiles123

Hello!  I must admit that it does get harder to stay in as time passes.  However, we must stay positive and do everything in our powers to stay safe. 
I order food from the local grocery store- do not want loved ones to get exposed to others .  It is important to discard the bags immediately, wipe off boxes , containers w a wipe before you put them away.
I ordered some special comfort foods that bring me back in time to a time without health issues, when I felt totally alive and as free as a bird.  We must believe that we will get to the other end of the ๐ŸŒˆ.  One day at a time.  How are you doing today? 

3 days ago

Ksmiles123

Ksmiles123Hello! Dr. Oz posts updates regularly on you tube: https://m.youtube.com/watch?v=2RVPBqEVeTM

3 days ago

LJ Walsh

LJ Walshvoted on My Journey with Lung Disease: Referral and Initial Treatment

Gave a thumbs up for a blog post!

3 days ago

Clee

Cleeanswered the question Flying with Bronchiecstasis

Hello, I've traveled many places and on a cruise with my Bronchiectasis and Tracheobronchomalacia. I've only had an issue with bleeding when I cough so hard, which seemed I was more concerned than my doctors. Point blank, ask your pulmonologist if it is …
Ksmiles123CathlinKandy also answered the question Ksmiles123and 2 others also answered the question

4 days ago

Clee

Cleeasked the question: Bronchiectasis and Tracheobronchomalacia

Hello, I have both Bronchiectasis and Tracheobronchomalacia (TBM). I do have a daily routine to keep my mucus thinned, but my bigger concern is the TBM. Sometimes my coughing is so hard trying to clean out the mucus that I've even caused petechiae eye. …

4 days ago

JamieS

JamieS

Just a reminder for today's 3pm webinar!

Many of you expressed interest in hearing more about how to care for your emotional well-being during this time of uncertainty and social distancing. While we were only able to spend a few minutes on this topic during the webinar last week, we have an opportunity for you to hear from Dr. Michelle Eakin, a clinical psychologist at Johns Hopkins University. Dr. Eakin will be joining us on Thursday, March 26, 2020 from 3:00-4:00 pm EDT to address the topic of maintaining your emotional health during this stressful time.


Please register for the webinar at https://attendee.gotowebinar.com/register/8176172279551321613. We encourage you to register even if you cannot attend. In the event we reach maximum capacity, or you are unable to attend, you will receive a link to the recording. We hope you will make plans to join us!

4 days ago

Gretchen

Gretchen

COVID-19 and Your Emotional Health

Many of you expressed interest in hearing more about how to care for your emotional well-being during this time of uncertainty and social distancing. While we were only able to spend a few minutes on this topic during the webinar last week, we have an opportunity for you to hear from Dr. Michelle Eakin, a clinical psychologist at Johns Hopkins University. Dr. Eakin will be joining us on Thursday, March 26, 2020 from 3:00-4:00 pm EDT to address the topic of maintaining your emotional health during this stressful time. Please register for the webinar here. We encourage you to register even if you cannot attend. In the event we reach maximum capacity, or you are unable to attend, you will receive a link to the recording. We hope you will make plans to join us! Please register for the webinar here: https://register.gotowebinar.com/register/8176172279551321613 We encourage you to register even if you cannot attend. In the event we reach maximum capacity, or you are unable to attend, you will receive a link to the recording. We hope you will make plans to join us!


6 days ago

Ksmiles123

Ksmiles123

Hello! Does your family understand your concerns?  

6 days ago

Ksmiles123

Ksmiles123

Hello! How are you coping w the quarantine?

6 days ago

Bret99

Bret99

1 week ago

Ksmiles123

Ksmiles123

Hello! The article below attempts to differentiate the common cold, flu from the corona virus, as per MD from Northeastern:https://www.womansday.com/health-fitness/a31811168/coronavirus-symptoms-vs-cold-flu/?source=nl&utm_source=nl_wdy&utm_medium=email&date=032320&utm_campaign=nl19775161

1 week ago

Gretchen

Gretchen

As most of us are homebound more than normal, what are you doing more that you usually do in a routine day? Cooking, reading, baking, more thorough cleansing of your devices, calling people on the phone? What are some good activities to ease our minds and keep us occupied? Please share! 

1 week ago

  • NewestOldestClick to View All Comments9 comment(s)
  • Made PramanaHappy to read your activities. I mostly take a lot of rest, then walk inside my house. I like to watch movies and play games with my phone.5 days ago
  • Ksmiles123Glad everyone is keeping busy and trying to make the best of the time quarantined.  We will truly appreciate our freedom once the quarantine is lifted. One day at a time. 5 days ago
  • GretchenKristen, I love dressing your dog in embarrassing costumes! I would love to see a picture of sweet Gimlet!
    Island Girl, that sounds like a routine to promote sanity! I am thankful that the weather is relatively nice to get outdoors and enjoy fresh air. 5 days ago
Asmith

Asmith

I donโ€™t have a cough really.  Just a little cough here and there.. it feels like a heavy feeling in my lungs and was wondering if that was a normal
Feeling?

1 week ago

Myrnie

Myrnie

Thanks for the response....feeling better. 

1 week ago

Ksmiles123

Ksmiles123Hello! I feel that watching  the news too frequently is not good for us.  How do you feel? The link below offers a good diversion.https://artsandculture.google.com/

1 week ago

Ksmiles123

Ksmiles123Hello! CDC just posted a Corona Virus self checker: https://static.prototype.cdc.gov/coronavirus/2019-ncov/if-you-are-sick/index-bot-test.html

1 week ago

Myrnie

Myrnie

I am coughing a lot. Staying in and my shoulder and middle back area are hurting. Myrna 

1 week ago

  • NewestOldestClick to View All Comments9 comment(s)
  • Ksmiles123Kandy,
    Are you doing deep breathing exercises twice a day? I assume that you are doing some type of airway clearance?6 days ago
  • KandyI do ezpap do not know if u know what that is a line to a o2 tank and line to neb to push meds down deeper to lungs.  I told my RN daughter was having air trapping she thought this be good to do.  I have vest also to do.  Aerobika is here also. 6 days ago
  • Ksmiles123Sounds like you are well equipped. Take good care .5 days ago
Ksmiles123

Ksmiles123

1 week ago

BooBoo

BooBoo

Hi. I'm new to this so please bare with me. Diagnosed with NTM and fixing to start the 3 top prescriptions for it. Called MAC disease. What side effects from antibiotics from those who have experienced...?

1 week ago

Ksmiles123

Ksmiles123Deepak Chopra has a website on mental hygiene to assist patients re: the corona virus .https://neveralone.love/

1 week ago

Asmith

Asmith

What is everyone describing to other people the feeling they are having in their lungs?

1 week ago

  • NewestOldestClick to View All Comments8 comment(s)
  • Ksmiles123Yes, raising the head of the bed does help.  A little help from the cough medicine is better than no relief.  Is it possible to take a bath w Epsom's salts before you go to sleep?  We must try every measure to assist us w ๐Ÿ’ค.  We feel awful when we donโ€™t get sleep.1 week ago
  • KandyI go in streaks with coughing maybe good for a while then bang more coughing think this is normal.  Not going anywhere but injection to the clinic every 2 weeks.  Want to walk outside but its always so windy. 1 week ago
  • Ksmiles123Kandy ,
    I assume that they are taking special precautions at the clinic for  patients w lung issues???6 days ago
Ksmiles123

Ksmiles123

How are you doing today?  Reading and listening about the inflammation issue is quite alarming.  I have a history of MAC/ hypersensitivity pneumonitis.  We must practice every possible infection control precaution, take care of ourselves, work on our airway clearances, build our immunity & take one day at a time.

1 week ago

Ksmiles123

Ksmiles123

Hello! It is important for you to differentiate a typical exacerbation / flare up for you vs. any new symptoms that may appear.  For example- regular exacerbations do not result in a high fever for most patients.  The tool below is a checklist to review symptoms.  
https://respiratory-research.biomedcentral.com/articles/10.1186/s12931-019-1272-y/tables/1

1 week ago

Ksmiles123

Ksmiles123

Hello! While we are homebound-It is time to get our lungs into the best shape as possible , think about it like spring cleaning, getting in shape for the spring/ summer
 The link below is in diaphragmatic breathing: https://www.healthline.com/health/diaphragmatic-breathing
Letโ€™s put our boxing gloves on and get prepared as much as possible to fight, God forbid we get the virus.  

1 week ago

Ksmiles123

Ksmiles123

1 week ago

Sign In to Participate
Or register to become a member

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