Ksmiles123

Ksmiles123Hello! The link below is on how to find monoclonal antibodies in your area.
https://protect-public.hhs.gov/pages/therapeutics-distribution#distribution-locations


5 hours ago

CHR42

CHR42answered the question Has anyone ever been cured from Mycobacterium abscessus and chelanae?

Check out this ancient, Alaskan Native American herb, "Devil's Club". I discovered it while on an Alaskan cruise and it is said to have anti microbial properties. I use it daily as an elixir in my EmergenC drink. So far so good and no side effects. I …
Ksmiles123kuwViviand 6 others also answered the question Ksmiles123and 8 others also answered the question

18 hours ago

Ksmiles123

Ksmiles123Hello! Which brand of vitamins do you use? https://www.healthline.com/nutrition/best-vitamin-brands?slot_pos=article_1&utm_source=Sailthru%20Email&utm_medium=Email&utm_campaign=generalhealth&utm_content=2022-01-17&apid=25246343&rvid=94a84db5178149857828ced51c5f2056ff605e1649ff4cd9cb2111133e73b49f

1 day ago

Ksmiles123

Ksmiles123

Hello! How are you doing today?  Snow continues to fall in Pittsburgh. 

1 day ago

Kandy

Kandy

I had a lot trouble getting thru tonight both Foundations.  Must be the storm.  

































1 day ago

Ksmiles123

Ksmiles123Hello! Are you getting enough zinc in your diet or via supplements? https://www.everydayhealth.com/pictures/best-food-sources-zinc/?slot=0&xid=nl_EHNLdiet_2022-01-16_26386231&utm_source=Newsletters&nl_key=nl_diet_nutrition&utm_content=2022-01-16&utm_campaign=Diet_and_Nutrition

2 days ago

marsrocket

marsrocket

well dang. gave a sputum sample yesterday. prelim results suggest that the mycobacterium fortuitum from two years ago might’ve returned. will know more in 10-14 days. no treatment until then. last time it was 8 months of antibiotics, though was told that treatment could last 1-2 years. recently been coughing more and making even more sputum, which should be impossible. 

3 days ago

JohnT

JohnTanswered the question Thoracotomy

Hi Jackie, I had a right upper lobectomy almost ten years ago. The surgeon was Dr. John Mitchell at the University of Colorado Hospital. They are affiliated with National Jewish Health. Doctor Mitchell uses the VATS system of remote access. He makes …
Ksmiles123 also answered the question Ksmiles123 also answered the question

4 days ago

JohnT

JohnTanswered the question Pulse Oximeter Recommendations

Hello Mary, Any consumer pulse oximeter is not going to be as accurate as the fancy one at the doctor office, but all you need is one that gives you a relative value (are your numbers higher or lower than yesterday?) I have one from Walmart and one from …
Ksmiles123 also answered the question Ksmiles123 also answered the question

4 days ago

MaryS

MarySasked the question: Pulse Oximeter Recommendations

Does anyone have recommendations for a reliable, over-the-counter Pulse Oximeter? I was diagnosed with mild bronchiectasis last year. As everyone can relate, this diagnosis has made the pandemic especially difficult. I've been extremely careful about …

4 days ago

JackieH

JackieHasked the question: Thoracotomy

Has anyone had a lobectomy due to mac infection and broncheatasis? The surgeon suggested removing the upper right lobe of the right lung and a portion of the lower right lobe in the right lobe where there is MAC. Just curious if anyone else has had …

4 days ago

Jenny Thompson, Bronchiectasis and NTM Research Program Coordinator

Jenny Thompson, Bronchiectasis and NTM Research Program Coordinator

Greetings BronchandNTM360Social Community!



I'm happy to be joining the COPD Foundation
as the new Bronchiectasis and NTM Research Program Coordinator. My
primary role will be serving as the main point of contact for the Bronchiectasis
and NTM Research registry. I look forward to serving the community and assisting
in the valuable research being conducted!

5 days ago

Ksmiles123

Ksmiles123commented onLiving with Bronchiectasis – An Opportunity to Tell Your Story

 Sharing your stories contribute to increased public awareness of NTM/ Bronchiectasis. Greater awareness leads to more funding for research....

5 days ago

JohnT

JohnTvoted on What is an Adverse Drug Reaction?

Gave a thumbs up for a blog post!

5 days ago

Ksmiles123

Ksmiles123Paxlovid is the name of the new Pfizer Anti- viral/ corona drug. Below is an overview of the drug:https://www.pharmaceutical-technology.com/features/paxlovid-pfizer-covid-19-pill/

5 days ago

TimD

TimDvoted on What is an Adverse Drug Reaction?

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5 days ago

Elaine F.L.

Elaine F.L.

My Bronchiectasis is so mild my Dr.  says my breathlessness is caused by my weight.  I have lost 9 kilos and am still breathless, though there is some improvement.  
He says when I drop another 10 kilo to 70 kilo I should be less breathless or free of breathlessness.    I am 170.688 cm (I think) 5'6"  I don't get why other people I know don't suffer everytime they move when they are also overweight.

5 days ago

  • NewestOldestClick to View All Comments12 comment(s)
  • Ksmiles123Rose,
    Some pulmonary rehabs are educated in Bronchiectasis/ NTM , some are not. Some can really serve us, some are very basic and are not much more than going to a local gym. Are you able to exercise regularly at this time? Do you have any  specific questions regarding any of the preventative measures?2 days ago
  • RoseHII walk my dog every morning for about 20-30 minutes and take one exercise class which usually involves half an hour of cardio -- I take a tai chi and yoga class weekly too but not a lot of movement.  I do a sinus rinse every morning and depending on what liquids I drink during the day, I will cough up 2-3 plugs of yellow mucus at a time.  I've been losing weight -- about 6# last year -- so my ID specialist recently prescribed an appetite stimulant and we'll see if that helps.1 day ago
  • Ksmiles123Rose,
    Sounds like you are doing all the right things at this point in time. Glad that you are able to exercise and coughing up mucus plugs.  I have a bigger appetite at breakfast and lunch, eat less at dinner.  
    Do you have more energy, a bigger appetite earlier in the day? The goal is to get adequate protein and vitamins from vegetables, fruits, some carbs, etc. Hopefully, you can squeeze in more carbs during the earlier part of the day. I hope that the appetite stimulant helps you. Please keep us posted.Katie 1 day ago
Kandy

Kandyvoted on What is an Adverse Drug Reaction?

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5 days ago

JD

JDvoted on What is an Adverse Drug Reaction?

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6 days ago

JohnT

JohnTcommented onLiving with Bronchiectasis – An Opportunity to Tell Your Story

 I agree. We need to tell our stories....

6 days ago

JohnT

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

Gave a thumbs up for a blog post!

6 days ago

laff4evr

laff4evrcommented onLiving with Bronchiectasis – An Opportunity to Tell Your Story

 Thanks for posting this Christina. ...

6 days ago

Kandy

Kandyvoted on My Journey with Lung Disease: Family Connection

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6 days ago

ChristinaH

ChristinaHadded a new article Living with Bronchiectasis – An Opportunity to Tell Your Story

Many in our community know first-hand the complexities of living with bronchiectasis. Bronchiectasis is characterized by thickened or scarred airways which leads to excessive mucus pooling. When the mucus gathers in the airways, it can lead to frequent, burdensome infections. Due to the difficulties in moving mucus out of the airways and the importance to avoid illness, a “day in the life” of a patient with bronchiectasis can often be centered around activities that assist with airway...

6 days ago

Ksmiles123

Ksmiles123

Hello! The link below reviews why exercise is so important for Bronchiectasis patients: https://bronchiectasis.com.au/physiotherapy/exercise/why-prescribe-exercise-in-bronchiectasis

1 week ago

laff4evr

laff4evr

For me, this new year has already had some odd events....
My nephew wants to be a Dancer which his dad thinks is Dopey.
A buddy's date was quite a Vixen which made him Happy.
I missed seeing a Comet which made me Grumpy.
And Donner is the last name of my new lung Doc. 
So far, 2022 is the year of reindeer and dwarfs.

1 week ago

MikeK

MikeK

Not very well. I not only have bronchiectasis but emphysema, pulmonary fibrosis, and radiation pneumonitis all as a result of exposure to agent organs and a history of smoking. I am considered to be a stage 4 metastatic lung cancer patient although I have been cancer free for almost 6 years. I did have a right upper lobe removed for the cancer diagnosis 1o years ago. I currently however have been having bouts of coughing up significant amounts of blood. This seems to be coming from my lower right lung. I am wondering if anyone else has experienced this frightening result off frequent coughing. I have been on Symabort 160 as well as blood pressure and statins.

1 week ago

  • NewestOldestClick to View All Comments6 comment(s)
  • Ksmiles123Mike,
    Hello! Have you updated your cardiologist? Are you being followed by a gastroenterologist? Do you have a hiatal hernia or other issues??
    78 is still young- you deserve to get to the root cause and to feel better. 6 days ago
  • MikeKThanks for the concern and advice. I am scheduled to see the cardiologist and a second pulmonologist in a couple of weeks and am waiting on a call back to schedule an endoscope with my gastroenterologist . They all are pretty sure that I have an intermittent bleed in the bottom lobe of the right lung. The only way to verify is to do an invasive angiogram and lodge a small bead in the offending vein or artery, not sure which is at fault . The issue is the track the radiologist takes goes along the spinal column and there is a significant risk of paralysis. I have been advised that the risk is not worth the cure.6 days ago
  • Ksmiles123You are most welcome! So glad that you have all of your specialists communicating with one another re: your treatment plan. Glad that you are scheduling an endoscopy in the near future. Wishing you the best w the new cough medicine 6 days ago
Ksmiles123

Ksmiles123

Hello! How are you doing today?
A new week ahead.  We are near midway  through the month of January.   January, February are always the peak months for the flu season.  The new term this year of the “ Fluorona” season. We must continue to practice strict infection control precautions until we get through this period of time. Hospitals , doctors are working at a very busy pace at this point in time. Let’s work together to review preventative measures to keep us as safe and well as possible.
Please post any questions that you may have about infection control, the flu season, or any other relevant questions.
I am so looking forward to the spring, getting through the next few months safely and as peacefully as possible. 
We must stay positive, practice good self care, continue with treatments such as airway clearance, etc. Have a pleasant day! 

1 week ago

Ksmiles123

Ksmiles123Hello! Below is an article from National Jewish on the  updates of the 2 anti- viral , corona virus pills: https://www.nationaljewish.org/patients-visitors/patient-info/important-updates/coronavirus-information-and-resources/about-coronavirus-covid-19/related-articles/two-new-covid-pills-on-the-horizon

1 week ago

JohnT

JohnTvoted on My Journey with Lung Disease: Family Connection

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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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