Discussions

When I started with a new pulmo 2014 after diagnosing me with bronchiectasis we talked about zpak weekly but due to hearing loss a side affect of that antibiotic he was hesitant on giving me this. So I had my hearing checked and I had already lost complete hearing in my right ear. So with this information my pulmo decided to give me zpak 3 times a week and have been doing this for quit a few years now to prevent infections. I have not had any infections just a lot of inflammation of which zapk is to help that also. I have had gerd before this diagnoses and after having a appt with a upper Gi dr he did a upper twice and decided that I do show Barret's esophagus so he has prescribed another gerd pill taken at night so that is one in morning and one before bed. If antibiotics affect your stomach a good probiotic will help you stomach but must be taken 2 hrs before the and or 2 hours after. Do not take them together.

I sat around a campfire last night for about three hours. It's the first time I've been around a campfire since I was diagnosed with bronchiectasis. I coughed a good bit during the evening, but I thought I would be fine. I came home, used my nebulizer and went to bed.

I coughed hard for an hour and a half before finally being able to stop. I was also somewhat short of breath. As this is something I have always enjoyed I don't want to want to miss out. I only attend occasionally, but I won't be attending again unless I have an idea how to avoid the coughing and shortness of breath. If anyone has any suggestions I would appreciate hearing them. I'm still short of breath and coughing 12 hours later. The cough is not as gut wrenching, thank goodness.

Franny

Has anyone seen this article that states that United Healthcare is refusing certain non-emergency claims in the ER. If you have bronchiectasis, this is very concerning because, as you know, you can become seriously ill very fast with bronchitis, needing hospitalization, If you happen to get sick on a weekend,which is always when I get sick, your primary is probably not available and an Urgent Care facility is not a good choice. Maybe we should be writing to our Congressman about this. Anyone interested in doing that?

https://finance.yahoo.com/news/united-healthcare-f...

Hello, my mom (71yrs) had a kidney transplant 7 years ago. She has recently been diagnosed with NTM and MAC. She has been doing breathing treatments for the last 3 months but the MAC is spreading and they want to start her on medications. Since she is on immunosuppressing drugs, she can't be on "normal" drugs to treat NTM/NAC. They want her to be in a trial for Clofazimine. Has anyone been on this drug? Any information you can pass on to me? Also, she is seeing a pulmonologist at Denver Jewish Hospital but is having trouble finding a Kidney transplant doctor that has treated patients with NTM/MAC. Does anyone have any kidney doctor recommendations? Thanks!

I am fairly new to this site, and I just saw the post about starting a video chat group for people dealing with bronchiectasis about 8 months ago. Was that ever done?

What hobby do you enjoy the most? Do you have any activities that you turn to for stress relief?

For those of you that have received your Covid vaccine, have you been able to enjoy more “peace-of-mind”? What activities are you planning to do now that you are vaccinated?

What diet is best for bronchiectasis

I have Bronchiectasis and have had an uncontrollable cough for years. I nebulize saline and use albuterol and symbicort daily with minimal results. What really works for me is a low dose of Tramadol every six hours. I now have a cough I can live with.

I was just diagnosed with sleep apnea. I need advice for cleaning the CPAP. I don't have the equipment yet but I wanted advice from people with Bronchiectasis.

What are some of the preparations that you do in order to make traveling easier or safer? What challenges with travel have you faced in the past?

Has anyone experienced numerous false negative sputum sample results before they found the right Doctor/Laboratory?

If you have used Acapella therapy for bronchiectasis, have you found it useful? I understand they are not really able to be cleaned, so how often do you replace the unit?

Managing chronic lung conditions like bronchiectasis and NTM can be an all-encompassing task. Many patients’ primary concern is clearing their airways. What other things do you do daily or weekly that you believe help manage your condition or improve your health? Have you made any nutritional, exercise, or other health and wellness changes since your diagnosis?

My cough is dry in the morning and gets better throughout the day.

I have been coughing constantly since last January. My pulmonologist is sending me to an ENT who is at a voice center. I'm wondering what to expect. I read about the center and found cough training listed but not much information.

More diet tips

I am new to this site. Does anyone have information on the mold Rasamsonia Argillacea? I have just had that mold show up on a sputum sample and haven't been able to find much information on it. I understand that it's a really difficult, year long treatment on 2 antibiotics without a great success rate. Thanks for any help on this

COVID vaccine

I've been told I will stop meds next month. I haven't talked to ID doctor yet but am curious. Do you stop cold turkey or wean off of them?

Have you talked to your family about your condition(s)? If so, what details did you share? Any advice you can give to others who may be planning to share the news with their loved ones?

Hi all, thanks to those of you who joined our Coffee Break yesterday! With St. Patrick's Day in just a few weeks, I am posting some recipes that Ksmiles123 has shared (thank you, Ksmiles!).

Do any of you have St. Patrick's Day recipes you're willing to share? Any fun, family traditions?

What were the first symptoms that you noticed? How long (after the onset of symptoms) did it take for your diagnosis to be confirmed? Were you diagnosed with bronchiectasis, NTM, or both?

My pulmonologist is choosing to not give me antibiotics. I think because my lung function is still normal and I don't have a lot of symptoms other than a couple coughing bouts per day. He did give me a nebulizer which I use every day and a flutter device. My culture was negative but he still thinks I have MAC but not a bad case. I run almost every day and have no issue with fatigue. I'm kind of confused by it but I think he's worried that the antibiotic regimen will be too much for me. I was thinking maybe I could do the 3 per week antibiotic.

Hello everyone and Merry Christmas/Happy Holidays. It's been a while since I've been on, hope all is well... I have a quick question. Has anyone in the community ever tried Advanced Lung and Bronchial Support supplement by a Dr. Sinatra? If so, do you have any thoughts about it?