Discussions

Are you staying well hydrated? The link below discusses the importance of staying well hydrated.:https://diet.mayoclinic.org/us/blog/2022/how-to-stay-hydrated-over-the-summer/

Are you checking out the air quality in your area throughout the summer months? https://www.airnow.gov

Are you traveling internationally in the near future? The link below discusses travel medical insurance : https://www.nerdwallet.com/article/travel/travel-medical-insurance-emergency-coverage-travel-internationally#travel-insurance-vs-travel-medical-insurance-1111609185

I'm on my third attempt at taking the big 3 medications. I have decided that I will no longer take them. The side effects are just too much for my body. Since March, I have been sick more days than not (from the medications). Has anyone found themselves in my shoes? If so, what was your plan B? Thanks.

Hi everyone,
I am having PFT MTC and Bronchoscope next week, I just saw the Bronchscope on the orders.
Now I’m scared from googling bronchoscope. Is it very frightening and uncomfortable while having the procedure or after?

I have been on z-pak, then, doxycycline, then amoxiclav in the past four weeks. Wonder why bronchoscope when it may be dangerous

Thank you

Have you ever experienced a hypersensitivity or allergic reaction to a supplement. The blog article below discusses possible reactions from some supplements:https://www.copdfoundation.org/COPD360social/Community/COPD-Digest/Article/1853/Are-your-supplements-making-you-sneeze-and-wheeze.aspx

Are you able to get some exercise on a regular basis? The article below offers some good tips on an exercise plan: https://www.bronchiectasisandntminitiative.org/Learn-More/Learn-More/Exercise

Hi again!

Does anyone have information or links to share on joining singing for lung health groups?

Thank yo

Have you ever taken a chair yoga class? Would you like to share your experience?

When collaging a masterpiece what type of lung medium or glue do you recommend ? Elmers says non toxic and all the books on collage say to use acrylic gel medium. Any advise?

Are you taking dietary supplements? The article below reviews the basics on supplements. https://www.fda.gov/consumers/consumer-updates/fda-101-dietary-supplements

Do you know how to differentiate between allergies, Covid and other respiratory issues? The link below provides some helpful information on the subject:https://www.cnet.com/health/medical/how-to-know-if-its-allergies-covid-or-something-else/

Hi. I can't seem to find much information on M-Xenopi. Can anyone direct me toward a good resource for it? Thanks.

Q. Have you had a lung wedge resection?
A: Yes

Q. Where did you have the surgery done?
A: Saints Mary & Elizabeth Hospital in Louisville, Kentucky.

Part of the middle right lobe was removed in April 1975.

I think a sponge was left in there because I've been thirsty ever since.

A few weeks ago I slightly injured my upper ribs. No big deal (except coughing, sneezing, ouch!) and I knew it was going to go away.

My doctor ordered x-rays as a precaution and although my ribs were fine, the radiologist noted the presence of Bronchiectasis in the lower lobe of both lungs.

Going back a year or so, the motor in my ResMed CPAP machine began making noise and I wasn't going to spend hundreds of dollars on a new one (of, course, no one is willing to fix it). So I took apart my old machine and found that it used the same motor. I swapped them and problem solved.

Now, here's the thing the motor in my current machine had a soft foam thing glued to the top of it, presumably to help keep it quiet, and part of it was missing. I looked around and could not find any pieces of it. So I checked the old machine and it didn't have the foam, although it did have glue residue.

I can only conclude that the foam has disintegrated and I've been breathing it in and I now have an incurable lung disease. Is there a connection between the disintegrating foam and delveloping Bronchiectasis?

Has anyone else had this suspicion, or seen it reported anywhere?

Hi, I got diagnosed with bronchiectasis in December after having problems with my breathing / coughing for years. I take 1 inhaler a day with a pill at night and complete airway clearances once a day. I’m 26 and do regular exercise biking 30 mins a day and completing 10k steps as well as occasionally running. I did play football etc but have had to stop due to breathing difficulty. My peak flow was originally at 500-550, but now is at 650-700. However at times I still find it hard to breathe when relaxing etc and struggle to breathe automatically at times. Is this normal? After reading many articles etc I’m very worried / anxious about my bronchiectasis getting worse as I get older if it will affect work, my social life and relationships. Does bronchiectasis always get worse as you get older and is there anyway around it? Many thanks

Just learned that I have tested positive for MAC again. I went through antibiotic treatment for 11 months in 2018. I have felt good until I had COVID in July of 2022. During COVID I developed a cough. Now MAC . My question for anyone who was treated for MAC just to have it come back. What was your treatment the second time?

I orginally had MAC in 2008, was treated with azithromycin, refampin, and ethambutol. Cleared in 2010 by the ID doc to stop meds. Ten years later, I'm back with another MAC. He put me on Azithromycin and Ethambutol for life. Said I was too prone to catching something again. Recently I had to stop the Ethambutol because of my worsening eyes. I am wondering if anyone is in a similar situation and what drugs are you taking. I need to find a replacement for the Ethambutol. It cannot be Refampin due a reaction to another drug I am on for migraines.

The link below offers suggestions for better cleaning recipes which are less irritating to our respiratory system https://www.lung.org/getmedia/3030b2d9-02f0-4be4-ab86-d6bd86f88b88/ALA-Safe-cleaning-products-MHE-program-August-2022.pdf

Have you had a sleep apnea test at home or in a hospital setting recently?

I have been trying unsuccessfully for months to arrange a way for Medicare Part B to pay for the 7% sodium chloride in 4ml vials that I use twice daily through a prescribed nebulizer to treat Bronchiectasis. I have consulted with my pulmonologist, pharmacist, Medicare directly and even a respiratory specialty hospital. Everyone says that this should be covered but has not been able to provide specific information to make it happen. Can anyone help?

Sleep hygiene is of upmost importance when you are dealing with an infection and or a chronic condition. The link below offers some suggestions. The one that I disagree with is not to take a nap. It is okay to take a nap in the afternoon if you are not feeling well, very tired, etc. We must give ourselves permission to get the rest that our bodies need. https://cci.health.wa.gov.au/~/media/CCI/Mental%20Health%20Professionals/Sleep/Sleep%20-%20Information%20Sheets/Sleep%20Information%20Sheet%20-%2004%20-%20Sleep%20Hygiene.pdf

Have you been in a pulmonary rehab program? If so, what were the greatest benefits for you?
https://www.copdfoundation.org/Learn-More/Pulmonary-Rehabilitation/What-is-Pulmonary-Rehabilitation.aspx

Do you understand the benefits of zinchttps://www.healthline.com/nutrition/zinc#sources

Do you understand the difference between a nutritionist and a registered dietician?

https://www.medicalnewstoday.com/articles/nutritionist-vs-dietician#nutritionist-vs-dietitian