Treatment Guidance Please...Bronchiectasis/Asthma/Reflux
I am feeling confused and would welcome your informed input. Diagnosed with Bronchiectasis and more recently with NTM – MAC and now a decrease in lung function by 25% compared to last test 6 years ago.
Although also diagnosed with asthma in 2009 I had never felt the treatment of it (puffers/inhalers and most commonly Symbicort) made any real difference to the issues bothering me - initially my cough. So generally I have been referred to as uncompliant with regard to treatment for it.
Over the last 18 months I have been following a protocol proposed by the Lung Matters (Facebook group) which specifies daily nebulising with salbutimol followed by 7% hypertonic saline (with no steroids or other puffers inhalers).
My recent NTM lung infection diagnosis may have only been picked up since I have been taking more sputum samples during this protocol. I have also recently found that the salbutimol aggravates my GERD/reflux problems and so I have been nebulising with the saline only.
My recent lung function test apparently shows that I have had a drop of 25% in lung function since the previous test 6 years ago. The physio I saw at this recent RPH specialist appointment has recommended I do gentle huff coughing instead of the nebulising (which I feel is not going to be sufficient). The registrar I saw at this specialist appt once again was pushing Symbicort and/or fluticasone and told me that my bronchiectasis was mild and shouldn't be causing the issues I am experiencing (presumably referring to the at least 7oz cup of fluid from my lungs each nebulising). She seems to think it is asthma/post nasal drip.
I am wondering if I should go back on a trial of Symbicort or something similar to see if it makes a difference.
I am worried that my lung function is decreasing so dramatically and also about the volume of mucus I clear each day (since I have not been able to find anyone else who regularly produces so much).
Clinical history:
2008 no HRCT evidence of emphysema/no convincing HRCT evidence of bronchiestases. Mild bronchial wall thickening mostly basal segments. No small airways disease, non calcified pulmonary nodules < 5mm
2009 Tested POSITIVE to histamine provocation for asthma, peak flow variations between 20 - 25% of peak flow, small airways obstruction and increased relative gas transfer, allergic to house dust Mite and cat, cold air and rapid air flow (talking/laughing/exertion), post nasal drainage, Lung nodules < 5mm, THOMPSON
2011 Small component of eosinophilic/inflammation/involvement of eosinophils, inflammation still occurring, but more likely through different mechanism. Low levels nitric oxide.
PETA GRAYSON
2013 CT - mild general peribronchial wall thickening both fields, mild changes of cylindrical bronchiestases mainly lower lobes. Minor areas of scarring no consolidation, minor areas compressive atelectasis, no endobronchial lesion, small nodules - previous granulomatous disease?
a little calcium in aortic artery, prominent oesophagus related to hiatus hernia?
CHRIS DENZ
2017 lung function shows mild airways limitation; chronic cough thought to be result of undertreated asthma, reflux, and post nasal drip.
BENTLEY RESPIRATORY
2023 CT mild interim generalised bilateral central peribronchial wall thickening both fields, and in lower lobes with interim increase in dilated bronchial wall thickening. Scarring noted, was only faint in 2013. Nodules unchanged. No pleural effusions/thickening.
2024 Told 25% decrease in lung function compared to 6 years ago.
Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
I have both hiatus hernia and reflux and am also not taking meds for the reflux. It seems surgery needs to be as a last resort...as there are more complications created often with the fundoplication surgery. However, I am doing a barium swallow test next week despite already being diagnosed with reflux/gastritis...not sure what additional information that may provide.
It is a dilemma, isn't it. I wish you success in finding a solution. I am resigned to continuing to nebb with hypertonic saline indefinitely. Perhaps some of the more recent research trials will help us with a way to stem the mucus build up.
You probably know this about the barium swallow test: "This exam is performed to assess frequent heartburn (pain), gastric reflux (food/acid coming back up), aspiration (food or fluid in your wind pipe), difficulty eating, drinking or swallowing."
I had the test twice and not once did it indicate, or the doctors tell me, I had any of the problems stated in the quote.
I think part of the problem with going to different specialists, or our PCP, is that they don't know what other type of health problems could be the cause of your, our symptoms and so we end up seeing multiple specialists.
As you said, it is a dilemma and changes ones social life, the constant need to clear the mucus and substance from the throat. I say substance because sometimes its gel like mucus and or clear water bubbles or foamy white water bubbles and saliva. I do try to have quite a few liquids during the day, water and homemade soup.
I'll be interested to hear what your barium swallow test tells you.
Thanks for the replies.
Barbara
Thank you Barbara. I hope to remember to post on here my barium swallow results. 😁
@blm1007blm1007 It might be worth asking your doctor why over production of mucous is associated with a hiatal hernia. It may be a physical problem. This is a hernia that pushes though the diaphragm into the chest cavity. If it is serious enough, it can compromise the space for the lungs or the lungs ability to move properly. If you don't move the lungs enough, mucous can collect in them instead of being expelled. Mucous is the body's way to clear debris out of the lungs to wash it out which works until that gets blocked. This is why hospitals always want to get patients up and walking after surgery because of the anesthesia and pain medication that can affect breathing and cause mucous to pool in the lungs. Excess mucous stuck in the lungs makes a breeding ground for bacteria and viruses and can lead to pneumonia.
If you are having acid reflux (that can be associated with a hiatal hernia), acids can irritate the wind pipe, and that irritation can cause asthma or phlegm issues. If you have asthma, that also restricts breathing and adds resistance to getting rid of phlegm.
I do have asthma. Allergies make the mucous more sticky. What helps me is to thin the mucous with over the counter Guaifenesin which is the generic for Mucinex. Then, I clear it more easily and breathe much better, and I also have inhalers. With acid reflux, it helps to stop eating a few hours before bed, so the stomach can be empty with less acid, and some patients also sleep on a wedge pillow or set the bed so the head end is higher to keep the stomach more upright.
What do you think about asking your doctor if there is a physical therapist or lung specialist that can specialize in breathing issues? My elderly mom has an advanced hiatal hernia and it does compromise her lung function. She has had partially collapsed lungs at the bottom, and is now on oxygen from having had pneumonia. She wouldn't be a surgical candidate because of her advanced age.
Have you looked into having possible allergies? Taking anti histamines can help dry up mucus secretions that are being caused by allergies.
https://www.mayoclinic.org/diseases-conditions/hiatal-hernia/symptoms-causes/syc-20373379
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https://newsnetwork.mayoclinic.org/discussion/tuesday-q-a-gerd-a-more-severe-form-of-acid-reflux/
Thank you for taking time to share your thoughts and learnings.
I am glad you related the information about how the hiatal hernia can further cause problems with the lungs and breathing. I will pay closer attention to it all and now know, thank you,, that it is a possible answer if my breathing starts to change in a negative way.
For now all is good there, my PFT is off the scale in the right direction per the technician that gave me the test in May. I am 81 and 10 months into life so not quite sure how I would be looked upon, now, with what we hear after a certain period of life lived......'advanced age." I will probably start hearing those words from doctors 'advanced age, not eligible, etc., for the proceedure, surgery.' For now, thank goodnes, all I hear from the medical faculty is, '"You are doing really well for your age (Nice words to hear). Obviously meaning 'advanced age'' and due to the fact that until the BE diagnosis I hadn't been on any medications except for the couple of surgeries along the way.
I have been talking to myself about having another test to check the hiatal hernia to see if it is worse and to discuss all with the gastroenterologist and especially now with the information you were so kind to pass on to me.
I also must be sure my pulmonologist has paid attention to know I have been diagnosed with the hiatal hernia.
I have not had asthma diagnosed nor allergies with all the testing I have had with the local doctors and at NJH nor sinus problem with testing at Tyler.
Yes the phlegm and mucus began being a problem several years ago but only for a short time in the mornings. however, it is worse now and causes problems for me all day long. I make sure I bring it all up and out often, all day long.
I read a concern with taking Guaifenesin with a hiatal hernia. I was taking the liquid. I called the pharmacutical company that supplied it and the instructions I was given was to be sure to take with food. I actually decided not to take it at all. For me, so far, I can clear all easily.
Yes I am following all the guidelines for the unfriendly acid reflux.......diet, sleeping positions and sleeping aides etc. etc. Thanks Jennifer.
I use to wake up with a burning tongue and had said to myself that can only be acid and sure enough hiatal hernia diagnosed 10/2023. With all I am doing it very rarely happens now...it only happened once or twice when I was not careful about the time before going to bed.
I am trying, not as perfect as I would like to be, to be careful in all people and place situations etc. As we all do, I want to avoid anything that will cause me another problem of any kind...as in the Legionella and Mycoplasma Pneumonias that I had at the same time in the mid 1980's. Yup, survived!!!!
I lost my Mom to emphasema and my brother to COPD and BE. They couldn't stop smoking until it was too late. I never smoked.
Wishing your Mom easy, less troublesome, days and nights.
Thanks, Jennifer.
Hi Jennifer
Thank you for all that information...much appreciated.
Unfortunately that link didn't work for me. I believe I have some grass allergies but would be reluctant to add antihistimines regularly because of side effects. Would you mind sharing what the side effect concerns are?
Do you remember what the concern was taking Mucinex if you have hiatal hernia?
This is what I read on the internet and it may have been on drugs.com regarding Guaifenesin : "increase gastric acidity and may also relax lower esophageal sphincter, which can lead to gastric reflux into the esophagus."
I didn't want to take a chance of causing me to make things worse in terms of acid etc. since I have the hiatal hernia and then the possibility of relaxing the lower sphincter..... if in fact my lower sphincter is working. As far as I know, with the gastroenterologist tests, it is working, but...for me... I don't want to chance it. So hard to know sometimes what is best to do.
I see the quote "increase gastric acidity and may also relax lower esophageal sphincter, which can lead to gastric reflux into the esophagus" under the drug Theophylline not Guaifenesin. Perhaps you mixed them up when searching?
https://www.drugs.com/disease-interactions/theophylline.html
https://www.drugs.com/guaifenesin.html
Scoop....the one I read on a drug.com listed it, Guaifensin, specifically as one that does. Sorry I'm not sure I can post websites.
As we know everyone is different and for some it may not affect them. I just don't want to chance it. Thanks for checking it also.