ChristinaH

ChristinaHJoin our Lace-Up for Lungs: 31 Minutes a Day Your Way October Facebook challenge. Sign-ups are happening now! You choose the activity. Join us and raise awareness for COPD & the Foundation's mission. Sign-up today!

https://www.facebook.com/groups/794313581695194 

3 days ago

Storyteller

Storyteller

I have been having much less discolored sputum with increasing my vest to 25 mins a day and taking mucinex. I’ve also been drinking warm herbal teas and lots of water. 
Unfortunately, having pain around collarbone where the bronchiecstasis is . Now, I’m afraid of pleurisy. The dr. agreed I should do a sputum sample.
Has anyone gotten chest pain from increasing the vest ?

13 hours ago

  • Ksmiles123Glad that the best and mucinex & fluids are working for you. Some patients may get chest discomfort, I wouldn’t say “ pain”. Yes, another sputum would be good.  Did he/ she mentio, chest X-ray  an ekg as well? Just to be in the safe side? 3 hours ago
360Coach Brandon

360Coach Brandon voted on Fire pits, Fireplaces and Chiminea-Tips for Respiratory Patients

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1 day ago

Ksmiles123

Ksmiles123

Best wishes on Yom Kipper to all who celebrate the holiday. 

1 day ago

Ksmiles123

Ksmiles123Hello! Are you familiar with the Home Sputum Collection Project? https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Blog/Article/154/Launch-of-the-Home-Sputum-Collection-Project

Launch of the Home Sputum Collection Project

This article was reviewed by the Bronchiectasis and NTM Content Review and Evaluation Committee. The COPD Foundation, in partnership with NTM Info and Research (NTMir) and National Jewish Health (NJH) is now offering a limited number of NTM patients access to our cost-free home sputum collection …

1 day ago

BunnyG

BunnyG

I just started using the Afflovest two days ago. I’ve had floaters in my eyes for several years. This morning I have increased floaters. Can the vibrations do this? My teeth actually chatter when I use it. 

2 days ago

Kandy

Kandyvoted on Fire pits, Fireplaces and Chiminea-Tips for Respiratory Patients

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2 days ago

Kandy

Kandyvoted on Beginning the Journey of NTM Lung Disease

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2 days ago

JohnT

JohnTvoted on Beginning the Journey of NTM Lung Disease

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2 days ago

WalshKTF

WalshKTFvoted on Fire pits, Fireplaces and Chiminea-Tips for Respiratory Patients

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2 days ago

TimD

TimDvoted on Fire pits, Fireplaces and Chiminea-Tips for Respiratory Patients

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2 days ago

TimD

TimDvoted on Beginning the Journey of NTM Lung Disease

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2 days ago

JD

JDvoted on Beginning the Journey of NTM Lung Disease

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2 days ago

Ksmiles123

Ksmiles123

Hello! October is Healthy Lung Month! Let us assist one another in getting our lungs in the best shape possible: https://spiritoftheholidays.org/health-holidays/healthy-lung-month/

3 days ago

Ksmiles123

Ksmiles123

4 days ago

Kandy

KandyOctober is Natl Inside Air Quality Awareness Month

5 days ago

Faery

Faery

Hello everyone! I should have updated sooner, but boy so much has happened this past week. I got my PICC on 9/22. My Dr. has me on 2 IV and 2 oral. I don't have the list in front of me. The coordinator couldn't get a home nurse on 9/22, so I didn't start medication therapy. The nurse didn't come until Wed the 28th! My meds this time around are so overwhelming. I have to mix up my own powders to saline bags and hang them. Last PICC I had easy slow push and a self-infusing bulb. The pharmacy had the wrong thing in my chart and didn't include extensions for my PICC so I could self-administer. The nurse had to come the next day. Hubby did my night dose the night before. God love him, but he was sick as a dog from a cold with a fever that it was painful to ask him for help.  The nurse came before UPS, but she found her own extensions and hooked me up. She watched me prep my meds and approved then left. I have an adhesive allergy, and I am itching where the PICC patch is. I get changed on Monday, so I'll see how bad it is and what we can do about it. It's more annoying and not disruptive....yet. I do not like how the IV meds make me feel. My orals haven't arrived by mail yet. I am so paranoid of having another allergic reaction. They make my chest feel like it has discomfort and pressure. I'm hoping I get used to it. This past week I have been sicker with the coughing. I didn't catch the cold...not until this morning when I woke up with a very sore throat and swollen lymph nodes. I'm pushing water. My AM infusion went much better than my previous PM. - My energy level has decreased greatly. Often I don't feel like cooking dinner. Hubby can't cook much, and between that and soccer, we're eating takeout SO much. It will be better when soccer is over, but that's not till early Nov. - On a good note, my 2 home nurses are really nice. My kittens love them, so they have to be good people, right? Haha. 

5 days ago

  • NewestOldest
  • 360Coach Brandon It sounds like things are falling into place with your meds - quite the whirlwind of a week for you and your husband. I hope you can both feel a bit better over the weekend, and get the rest you both need to get to feeling better - Looking forwarding to your next updates!5 days ago
  • KandyHope you guys are feeling better soon.  Have a restful weekend. 5 days ago
  • Ksmiles123Faery,
    Hello! It is overwhelming to first of all deal w a new picc line, tge adhesive tape issue, mixing your own meds. It will take time to adjust to this schedule, to be more comfortable mixing the meds, etc.
    Please try to take a nap when you can.
    Can you get prepared chicken or vegetables soup at a local store? Simple, healthy nutritious meals w protein and vegetables are important now.
    Can anyone in your community assist w soccer season? It is very hard when out fatigue gets in tge way of our things to do list; however, it is upmost importance that you take care of yourself and get the rest you need. Please keep us posted. 5 days ago
TimD

TimDvoted on Foliage and the Respiratory Patient

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6 days ago

Linda Esposito, MPH

Linda Esposito, MPHanswered the question support groups

Hi there! Here is a link to the support groups. They are in the process of creatin a new At-Large group so if you do not find one in your area, you can contact them and they will find a group for you. Having support from others is fantastic! Best, Linda …
Mr G's WifeChristinaHKsmiles123 also answered the question Mr G's Wifeand 2 others also answered the question

6 days ago

Linda Esposito, MPH

Linda Esposito, MPHIn 2018 I took a train from New York City to New Haven, Connecticut to learn from this dynamic trio at Yale-New Haven Hospital.


Now, we can all learn from the comfort of our homes!
Enjoy! Linda Esposito, MPH


RECORDING LINKS BELOW


Yale Patient Support for NTM & BronchiectasisCenter for Pulmonary Infection Research & Treatment
PROGRAM


"NTM & underlying pulmonary conditions"


Ashley Losier, MD, Clinical Instructor Pulmonary & Critical Care Yale School of Medicine




"Brief Update on NTM and infection research"


Charles DelaCruz, MD, PHD Associate Professor & Director of the Center for Pulmonary Infection Research & Treatment (CPIRT) Yale School of Medicine


"Practical tips on airway clearance"


Marjorie A. Cullinan, MSHA, RRT-NPS RPFT Pulmonary Function Lab Supervisor Department of Respiratory Care Yale New Haven Hospital



Yale talk #1https://youtu.be/Bl21ep0lVt4 


Yale talk #2 https://youtu.be/86KDFW76rKc-




#Bronchiectasis #NTMLungDisease #MACLungDisease 

6 days ago

Ksmiles123

Ksmiles123

Hello! Tis hard to believe that October begins tomorrow. Throughout the month, we will be focusing on 
Testing and diagnostics for Bronchiectasis/ NTM, including PFTs, ABGs, 6MWT, sleep studies, and more
Please let us know if you have specific questions on this subject area. 

6 days ago

JohnT

JohnTvoted on Foliage and the Respiratory Patient

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6 days ago

Ksmiles123

Ksmiles123

6 days ago

360Coach Brandon

360Coach Brandon voted on Foliage and the Respiratory Patient

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6 days ago

Ksmiles123

Ksmiles123Hello!  Are you enjoying the autumn season? Do you deal with allergies in autumn 🍂? https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Blog/Article/59/Foliage-and-the-Respiratory-Patient

Foliage and the Respiratory Patient

This blog post was written by Katie Keating, RN, MS, patient advocate Fun fall decorations, such as pumpkins, hay stacks and cornstalks are a great way to get in the autumn spirit. Who doesn't love stunning fall foliage? While most people enjoy the lingering warm weather, Indian summer and …

1 week ago

Ksmiles123

Ksmiles123Hello! Product Pipeline information offers HOPE to patients awaiting new treatments: https://insmed.com/science/pipeline/

Insmed Product Pipeline

View Insmed's research pipeline and learn more about our product candidates and the conditions they are being developed to treat.

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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