New Bronchiectasis diagnosis - need advice
I believe I have had Bronchiectasis for years. I started having exacerbations with pain, extreme fatigue, tightness etc. Pulmo doctors just kept on giving me more and more Asthma medications ( Inhaled steroids, tezspire, formotorol etc etc) which worked somewhat for a while then stopped pretty much. Specialist after specialist were mostly clueless, and just tried to blame me, as if I was not doing my medications etc. I am now seeing a Pulmo at UTSW in Dallas and, I am now asked to produce sputum culture at home. I have not been able to do so. It is so tight in there and very little comes up at a later time, when I "clear my throat". I am about to be on medicare and am terrified by what may lie ahead. I am currently not on any direct treatment for Bronchiectasis other than saline because I have not submitted culture. I was so thankful I found this group to hopefully finally talk with people who know what I am dealing with. Any and all advice etc. is greatly appreciated.
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@mikejj244 Welcome to our support group, where we have hundreds of active members willing to help you on your journey.
When you use the saline solution, do you follow it with any type of airway clearance? I used to produce plenty of sputum, but now with less inflammation, I have little to cough up most days. What helps me is to use an asthma inhaler to relax the airways, wait a few minutes to let it work, then nebulize the 7% saline. After nebulizing, I wait another 15-30 minutes, then do some vigorous exercise - that gets the mucus moving. For me, yoga, calisthenics, a very brisk walk or strenuous hose/yard chores all work.
Have you tried any of these?
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4 Reactions@sueinmn I was prescribed a Aerobika device. I was advised that I use it first thing in the morning and again in the evening. I hook my nebulizer with the saline onto it and breath through it. It vibrates and is supposed to loosen up sputum, but it is not enough at one time, so far at least, where I feel it would be a viable specimen. I use nebulized budesonide/formotorol, and also yupelri in later nebulizer sessions. So you just use the regular nebulizer medication cup and uptake the entire saline vial? Then come back later and try the deep coughs etc? I have not tried this technique, but I will give it a shot. Maybe use the asthma meds first as well. Thanks so much for the tip!
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1 Reaction@mikejj244 You pretty much described me how I was for almost a decade without a diagnosis other than asthma. Very frustrating. Are you getting treatment for the bronchiectasis at one of the Bronchiectasis Centers? You can check to see if your health care facility is on the list. If not, you can search for one closest to you. It is imperative to be get treatment at one of these specialty centers. I read today that Baylor University Medical Center (Dallas) was just added to the list. Also a well known and established center is at UT Tyler. General pulmonologists are just that and typically not up to speed on BE. For example, one of the BE centers would likely induce a sputum sample in office since you have been unable.
Yupelri is a anticholinergic and can be very drying to the lung secretions, which might contribute to your difficulty producing a sample. Before I made it to a specialty center my general pulmonologist wanted me on Spiriva, which is an anticholinergic and made clearing my lungs next to impossible.
https://www.bronchiectasisandntminitiative.org/Find-Care/Care-Center-Network/General-Information
Sue started a thread on the ABCs of bronchiectasis which is chocked full of valuable information, which you can find here. https://connect.mayoclinic.org/discussion/resources-for-the-abcs-on-bronchiectasis-and-mac-ntm/
Here's a shortcut to how to perform a Huff Cough
One of our members demo-ing the nebulizer routine
https://connect.mayoclinic.org/discussion/short-video-on-nebbing-saline/
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6 ReactionsI am also unable to produce sputum for a culture. However, a bronchoscopy showed HIB colonization. Has your doctor considered a bronchoscopy for you?
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1 Reaction@mikejj244 Hooking the Aerobika to the nebulizer may be quicker, but possibly not the best way to move mucus.
The budesonide/formoterol neb used first should open your airways, then the saline thins the mucus. Allowing the saline mist time to penetrate (exercise is good - gets you breathing harder) also helps move the mucus. Then you can try the Aerobika, huff cough, or another technique. All before the Yulepri, which as @scoop mentions, dries you up.
By the way, the sputum (not saliva) only needs to barely cover the bottom of the specimen cup. I got two goods samples from that quantity in August.
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3 ReactionsI find a hit shower then sit on edge of tub and hack hard.
hit shower??
@sueinmn You may already know this about Dr. McShane's preference.
Yes Dr, McShane preferred nebulizing the saline without the Aerobika attached. After nebulizing the saline is when she preferred a patient go to and use the Aerobika.
Barbara
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3 Reactions@scoop Thank you so much for all the good information. I did not realize there were specialty centers. I am currently at University of Texas Southwest in Dallas which is probably the best care center in general in that area. My doctor there supposedly specializes in Bronchiectasis, however, this facility does not appear to be listed. I will have to consider moving to either UT Tyler or Baylor possibly. I would definitely be interested in getting sputum induced so I can finally get an accurate diagnosis and start targeted treatments more quickly. I have been trying to do the sputum collection for months now and am suffering all the while. I may also just quit the Yupelri immediately or taper off to see if that helps. I will be looking at the links you provided etc. to get more education on the subject. If I can get access to the best care and treatments, what improvements are possible given time?
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1 Reaction@kahkej Thanks for the response, greatly appreciated. He mentioned doing a bronchoscopy but it looks like a last resort after like 6 months of attempting to produce sputum culture at home. I am still trying but so far no good results.