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1st appointment w/doc tomorrow. Any "must ask" questions ?
Hi All,
I've been waiting a while to see the Bronchiectasis specialist at Mayo Phoenix - my spirometry and appointment with the doc is tomorrow. I saw a colleague of his back in March as my CT scan also showed a lung nudule which needed looking at, but this is the first appointment I could get with the Bronchiectasis guy even though I kept calling for an earlier appointment. Suspect he's super busy and my time may be limited. I did all the bloodwork back then.
Just wondering if there are any "must ask" questions that I may not have thought of.
I'm new to all of this although I've been coughing off and on for several years and it turns out my older sister in the UK has been diagnosed with Bronchiectasis also. Like others, an unrelated CT scan has led me to tomorrow's Mayo visit. I've been reading a lot and following this support group for several weeks.
Hoping tomorrow will start my journey off in the right direction.
Thanks
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If you are not already doing daiy airway clearance, I would ask for coaching and a PEP device, as well as advice on usinga saline neb.
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1 ReactionI'd also for clarification about disease severity and lobes impacted.
Ask what he thinks caused it. Have you had pneumonias, do you aspirate sinus drainage, have GERD, genetic conditions, etc?
Ask for his best ideas to keep your lungs stable and to prevent exacerbations.
IF there is time, you might ask about Brensocatib, the drug that might be approved this summer. I'm just curious if they expect to use it for many of us or target those with more exacerbations initially. Prob not a priority question at first appt.
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2 Reactions@pacathy
You may find this article interesting.
Open access
Brensocatib in non-cystic fibrosis bronchiectasis: ASPEN protocol and baseline characteristics
James D. Chalmers Pierre-Régis Burgel Charles L. Daley Show More
ERJ Open Research 2024 10(4): 00151-2024; DOI: https://doi.org/10.1183/23120541.00151-2024
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1 ReactionI looked through the whole study. But it is not clear to me what the conclusion was with Pseudomonas and Brensocatib. Is anyone else better at interpreting studies in a nutshell?
@irenea8 My read is that it will/might help those with bronchiectasis. If someone has both Pseudomonas and bronchiectasis it's hoped that it will help the bronchiectasis. Since you have bronchiectasis, I suspect you will be a good candidate for it. The studies included those who had pseudomonas and NTM disease. Very exciting. Let's hope we all derive some benefit.
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2 ReactionsYes I hope so in terms of potential benefit. But in my case I have chronic mucoid strain Peudomonas with heavy sputum load each day like someone with CF (rare in non CF). I have active infection/inflammation all the time. I do have periods that are worse but my every day is what most people would call an exacerbation. So given all that I wonder if it will be helpful for me. I am also on Oxygen and have Hypercapnia.
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4 ReactionsThanks. I've read the Willow and Aspen studies, but am curious about what the practitioners are thinking. I'm always curious though. : )
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2 ReactionsHi -
I was just diagnosed with Silent GERD and a mild swallow disorder while at NJH in Denver. I am a little frustrated because I had read about these being potential problems for people suffering with BE and MAC, and had asked my regular pulmonologist on several occasions if I should be tested for it. His response was it was "unlikely and not necessary" each time. Turns out I have a pretty good case of silent GERD, and have a mild swallow disorder (thin liquids only), and am now being treated and taking all precautions. The pulmonologist at NJH felt that correcting the swallow disorder and making treating the GERD could result in me clearing my infection. I've been working on it with very consistent airway clearance for two years now. So maybe ask about being tested for these things?