Brinsupri follow-up

@heidi0974 - Hi, I have been waiting to post until I got through the "sick season". Happy to say, that I was pretty well despite the grandkids passing viruses back and forth.
My goal in October was to make it through an outside nighttime wedding. (without coughing). In early October I did have to go on antibiotics for 10 days but it cleared up by the wedding. Usually I would never bounce back so quickly. Sad to say I got sick after thanksgiving and my sputum came back with strep, so more antibiotics (fever, increased mucus, etc.)...but again, I cleared up after 2 weeks with no coughing, very little sputum, and no fever. I think I read that these URI's are one of the possible side effects of Brinsupri (and 6 grandchildren under the age of 7). But I feel better than I have in a couple of years. Of course, still doing all the saline nebs, and airway clearance and masking. Cindy

I started Brinsupri on 9/21 through December and have not had any improvement. Same with Ohtuvayre and Dupixent.

@crepass Cindy, thank you so much for this feedback. Although I’m sorry to hear of your setbacks, I’m quite encouraged by your ability to bounce back faster too. And that you continue to feel better. This gives me hope after a month in.Getting through this busy social season is a challenge. And with grandchildren also who may appear healthy but could be carriers. I wish you much good luck on your journey and please continue to report in now and then. Wishing you a healthy and happy new year.Jeanne

I may have misspelled the med. It is Arikayce a nebularizer
with drugs that are kept in the ref. you do it daily.
You also keep taking antibiotics. You bring up huge
amounts of sticky mucus,

@heidi0974 Jeanne - I am not sure of the ages of your grandchildren, but mine have been taught to wash, wash, wash their hands and cover their coughs. So far, in nearly 10 years (including doing sick-child care for them) I have not caught any of their various bugs, and my husband has caught just one cold.

Just my 2 cents worth.

PS We have caught many more illnesses from our older friends and neighbors who do not follow good sanitary practices. That's why we avoid larger indoor gatherings during cold and flu season.

@sueinmn Sue, we have four grandkids ages 12-22, so fortunately they all “ know the drill”, but it’s always a good reminder.Your history with your precautions taken is very encouraging to me. Since I’m newly diagnosed just since October, we will avoid any real large crowd exposure this winter. I’d like to see how everything looks with my early May follow up visit to my Pulmonologist first. And give the Brinsupri lots more time too. I know it’s working after just a month. Happy New Year! Jeanne

@heidi0974 Wonderful to hear the Brinsupri is working. And good to hear about your grandkids. They are also at the age where you can explain your situation and ask them to self-isolate or wear an N95 mask around you if they even have a sniffle.
When I was diagnosed about 8 years ago, I was nearly paranoid about gatherings, etc. Time, and the great advice of my PCP and Infectious Disease doc, helped me through it. They both said, essentially, "Bronchiectasis is a disease you will live with, but you are very unlikely to die from it. Take reasonable precautions and go live your life." This kept me from "going down the rabbit hole" of trying to sterilize my environment and avoid every possible risk.
When we do go into crowds in the winter, we mask. For example, we fly back and forth from our winter place to home - masks in hand - or should I say masks on face.
Dr Jennifer Honda, who works closely with the NTM-ir organization, talks about living with BE in this helpful video:
https://www.youtube.com/watch

@heidi0974 Wonderful to hear the Brinsupri is working. And good to hear about your grandkids. They are also at the age where you can explain your situation and ask them to self-isolate or wear an N95 mask around you if they even have a sniffle.
When I was diagnosed about 8 years ago, I was nearly paranoid about gatherings, etc. Time, and the great advice of my PCP and Infectious Disease doc, helped me through it. They both said, essentially, "Bronchiectasis is a disease you will live with, but you are very unlikely to die from it. Take reasonable precautions and go live your life." This kept me from "going down the rabbit hole" of trying to sterilize my environment and avoid every possible risk.
When we do go into crowds in the winter, we mask. For example, we fly back and forth from our winter place to home - masks in hand - or should I say masks on face.
Dr Jennifer Honda, who works closely with the NTM-ir organization, talks about living with BE in this helpful video:
https://www.youtube.com/watch

@sueinmn Sue....I have not noticed a discussion about what you or others do when treating themselves to being served in a restaurant.
For myself, I try my best to go during what would be considered quiet times, early dinner, early hours etc. I try to stay seated away from others and cross my fingers that the server isn't contagious or sick.
What's your practice or thoughts when it comes to eating out in restaurants, if you do???
Barbara