Sputum cycle to the throat and clearing it
Question: Is this common to others?
I clear what I feel at the back of my throat and immediately more comes up and I clear and I clear.
Yes, at times mucus plugs come up with it.
I have not had an uncontrollable coughing spell. No fever, night sweats, etc., meaning to my understanding no exacerbation.
I am working my way through finding what works best for me in our personal journey of daily routines to clear the mucus and it is/has taken me a good while to find what is best, for me.
I know some people swallow the mucus/sputum but I have a hard time doing that for various reasons with one being the thickness of the mucus/sputum and I personally prefer to clear it out completely to see it all. As I mentioned in another post I clear it out into a clear solo cup to be able to see it all.
Questions: Is this common to others? Do you swallow or clear it out completely.? What made you decide to swallow or clear it out completely?
Barbara
Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
Do you Nebulize. It helps clear out the sputum. I don’t swallow the sputum.
Thanks Nancy.
I believe you have had BE since 2021. Yes I had a hard time at first with Nebulizing but am doing it now.
It appears we all do/try different things, as with many things in life. Even doctors vary with swallow or remove the sputum etc. let alone other things we have learned doctors differ with in relationship to patient care.
Good to hear from others to gather ones thoughts and make decisions.
Barbara
Thank you so very much. That is a great listing. I had not listened to all the episodes that I had found my way to early on in this journey and with this listing you have guided me to that will help considering the time factor etc. and a good keepsake as a reference.
I copied the link and went right to it.
Barbara
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!
I find all these things useful. You can dip in and out to the various podcasts that might be of interest to you and your situation.
It is so helpful to hear other people's journey with our BE and health. Any information is good to read and hear. We learn from each other and gives us 'food for thought'.
It appears you are now in good hands, overall, with what you have found your way to.
Don't have the exact area of where to find it but the Tyler Center of Care and NJH do post the type of tests they do for new incoming patients on the internet. That might help you know what tests your present doctors have done and what you might still need to have performed.....????? Looking forward to all you post and others, like bayarea58, jill6063 and the person jill met at NJH, after their visit to NJH.
Barbara
What an ordeal! So glad to hear that your persistance and medical care gave you relief.