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Sputum cycle to the throat and clearing it
MAC & Bronchiectasis | Last Active: 4 hours ago | Replies (20)Comment receiving replies
You asked"...Do you know what it means when we're coughing up less? ...
I can't tell you in an expert way, but I can tell you my personal observations of my mucus - isn't that a yucky topic?🤪🤢 When I had Pseudomonas and MAC at the same time, I felt like I was drowning in mucus whether doing airway clearance or sitting, sleeping, moving... This had been going on for over 2 years before my diagnosis - I would be dosed with steroids and antibiotics, get better for a month or so, and star all over again. I have had asthma for many years was always "bronchitis complicated by asthma and over-reactive airways." And I coughed day and night - even narcotic cough syrups didn't help.
Once I was diagnosed with Bronchiectasis, then Pseudomonas and MAC, I was treated first for the pseudo - 3 courses of antibiotics ending with Tobramycin. And I started airway clearance with levalbuterol and an Acapella device. At that point, my mucus went from green and actually odorous to yellow, and it diminished by half. But the cough, weight loss and fatigue did not improve. After I started the big 3 antibiotics, both my sputum and cough VERY gradually decreased, but I continued to test positive for MAC. At 12 months, against the wishes of my pulmonologist, I consulted an ID doc in our clinical group. The pulmo "fired" me and the ID doc found me a new one. ID doc increased my antibiotics to daily (Arikayce was in trial and I didn't qualify), and I actually got worse - probably too much for my then-100 lb body. After 6 months, I heard about 7% saline and started using it, and my mucus got thinner and clearer. By then, even though I never had a negative culture, with the pulmo and ID doc, I decided to stop antibiotics (I was down to 97 pounds, sick from the drugs and exhausted.)
6 months later, the amount of clear, thin mucus began to decrease, my cough was reduced and I got mixed positive and negative cultures.
That was over 4 years ago. Three years ago, I started a new inhaler, Symbicort, to manage my asthma, it was a game changer for me. My annoying cough rare and I only produce mucus over a couple tablespoons a day, and is based on exposure to allergy/asthma triggers, or it signals an exacerbation. At the first sign, I double down on 7% nebs, airway clearance and rest. I even weathered Covid with only a short course of oral steroids..
That was long - to summarize - I know "something" is going on when my mucus production increases and try to get ahead of it.
Replies to "You asked"...Do you know what it means when we're coughing up less? ... I can't tell..."
What an ordeal! So glad to hear that your persistance and medical care gave you relief.
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Wow thank you, most of the time these groups are more informative than my doctor visits! I too started airway clearance, 3% hypertonic saline (7 was too much), and learned about the huff cough from another patient.
Mac was indicated on a scan of my heart and my primary thought nothing of it in June 2024, by August I was having coughing fits at night and no medicine could stop it; I requested a lung scan but they didn't get me in until November. That showed MAC and BE.
I was like a frog in pot slowly turning up the heat, I never realized how bad things were because it happened gradually.
I had a bronch in December that immediately tested positive for Legionella, did 10 days of Azithromycin, and was referred to an ID who told me it was mild to moderate MAC and wouldn't recommend treatment. I insisted on starting because I didn't feel good and have 2 teenage kids, a job etc.
Went in for blood work, that turned into more tests, and so on. My bronc eventually came back positive for Aspergillosis, but was only treated for MAC and Symbicort for the BE/Asthma from my PD.
The Rif did a number on me (join pain, stomach issues, fever) and my ID insisted I had Covid or RSV, Flu...anything but a reaction to the medication. After repeatedly sending me in for respiratory panels I quit the Rif and asked for a CT to see if it was even helping. CT showed that everything was worse, her response was to "suck it up" and take the Rif. I fired her.
I was on the waitlist for a new ID when I wound up in the ER 6 days later with a partially collapsed lung and huge mucus plugging. I knew something was wrong because I could barely breathe and had stabbing pain in my right shoulder blade. I was there for 6 days doing round the clock treatment (every 6 hrs, plus IV antibiotics, Vfend) and felt amazing when they discharged me. They did a bronc w/lavage to clear the mucus plug on day 3 and got new samples. I was using the Volara in the hospital and the positive pressure on the nebulizer, coupled with Mucomix, Albuterol and something else helped tremendously.
I now have a Volara at home instead of the vest (from my PD) and my new ID thinks I'm ok on Azithro and Ethambutol for now, but really pushes the Arikayce. The PD thinks the collapse and plugging was from Aspergillosis and ABPA. I've been on Vfend for the fungal infection since the hospital and I really feel like my Pulmonologist is right, given that I had nothing huge in my upper right lobe in November then completely blocked. That area is 90% better and I am getting 98% to 100% O2 readings daily, sputum is turning clearer every day. I rarely cough. She started me on Nucala injections two months ago, but I can't exclusively contribute my recovery to that. I did breathing treatments 4x a day, then 3, now 2x.
I would have started the Arikayce but I have ulcers on my vocal cords, not sure if they got nicked during the bronc, but I am seeing an ENT to follow it. I can't start Arikayce until they are cleared.
Having 2 different doctors with 2 very different opinions has been challenging. I panicked when I saw the 2 small cavities (upper right lobe) but the surgeon said he didn't think I needed it; but wasn't out of the woods.
After talking to other patients I took it upon myself in January (when I fired the ID) to register for the out of state program at NJH. I want a solid opinion from people who are at a Center of Excellence. I will be there June 9th, with Arikayce sitting in my fridge.
In the meantime I have looked at the treatment protocol and went to an immunologist. His testing came back showing that I've likely had an auto immune deficiency my whole life, misdiagnosed as Asthma. He is talking to me about starting IVIg. We are waiting to see how my system responds to Pneumovax 23, in a month he'll repeat labs that will give him a better idea of how my immune system is functioning. That blood work was all abnormal and I'd never had those tests. No one else suggested I see one, or an ENT but I am grateful that I could find the information online and share with other people.
There is really no short response to anything since our treatments and co-occuring conditions are all so different. I appreciate your response!!
I am going to attend the conference on the 14-15th virtually and share what I can learn with my pulmonary rehab group.
Thank you again!