Pulmonologist in the Austin/SA Area and Airway Clearance Devices
This is my first post since joining two weeks ago. This group has helped me more during that time than my pulmonologist has since I was diagnosed in October 2022. I contracted a cough in December 2021. This led me on a long journey of several antibiotics, multiple rounds of steroids, and allergy testing. After doing everything the doctors told me to do my symptoms kept getting worse. I was running regularly before I got sick. By September 2022 I had trouble going on a walk. I finally went back to Pulmonologist who had previously said I was fine. I demanded a bronchoscopy because all of my symptoms lined up with Bronchiectasis. He very reluctantly agreed. Two days later he did the procedure and told me that he was wrong, and I was right. He told me to get a green Acapella and see him in a couple of weeks. The Acapella helped tremendously, but I never felt really clear. My culture did not show any signs of infection. He then prescribed Azithromycin 500mg MWF and told me I would be on it for the rest of my life. I took it for about 6 months and have stopped because of the things I have read on this site.
Two weeks ago, I was having a very difficult time clearing with my Acapella. I was frustrated and started scouring the internet. That is when I found this group. I began reading posts and found a link to a video for airway clearance techniques. I have never received any instruction from my doctor on airway clearance. The video I found here was incredibly helpful to me. I also found the mention of a book Beating Bronchiectasis. I got it on Amazon and read it. I have developed my plan for dealing with this condition based on the author's recommendations.
The real game changer has been finding out about nebulizing with 7% saline from this group. I began last Tuesday. I feel almost normal in my breathing for the first time since 2021! I have even added running back into my exercise routine. I feel like myself again! Thank you to everyone who shares their story and questions here. I am convinced that with the right techniques, doctors and support system I will indeed see this as something I can live a full life with!
That is my story. Here are my questions.
1) I live in between Austin & San Antonio, Texas. Does anyone know a good Pulmonologist who understand Bronchiectasis in this area?
2) I live 5 1/2 hours from UT Tyler. Would they see a patient without MAC? If so, would it be better to just go there?
3) The nebulizing with saline followed by my Acapella and active cycle breathing is working. Should I just stick with that or is there a benefit to switching to the Aerobika?
Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
Does anybody know a good pulmonologist/Mac specialist in the Chicago area/ Illinois/bordering states. I would travel if there is someone you could recommend.
Regarding airways clearing devices- has anybody used a BREATHER; my pulmo never mentioned it; I just use aerobica. Supposedly a breather is better but I never heard about it earlier
@liliana The devices serve 2 different purposes. For those of us with bronchiectasis and/or MAC, our main issue is usually effectively clearing mucus from our damaged airways.
The Aerobika and the Acapella are PEP (positive airway pressure) Vibratory devices. Exhaling through them produces a vibration in the airways that is meant to loosen mucus.
The Breather is a respiratory exerciser, which can be used to help strengthen the muscles used for inhaling and exhaling. It can also be used as a tool to help people recover from strokes and other issues, who need to relearn how to breathe effectively on their own again (such as after a long time on a respirator.)
So usually, a PEP is better, but there may be times, such as after pneumonia, when it might be helpful to use both.
Sue
Dr Diego Maselli Caceres with the US Bronchiectasis Research Registry. He is at UT San Antonio. There are only about 20 registry sites in the United States. I believe it means they see a large number of patients with bronchiectasis in order to qualify. https://www.bronchiectasisandntminitiative.org/About-Us/About-Us/Bronchiectasis-and-NTM-Research-Registry-Consortium
I hope this is helpful,
Linda Esposito