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?
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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
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1 ReactionDr 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