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Throat Radiation After-Effects, Aspiration & Suffocating Mucous
I am a 61-year-old woman that finished the last of 35 radiation treatments last March 2020. Since then, I have had pneumonia and other lung infections which was finally attributed to aspiration of solids and liquids after a barium swallow test. In that regard, I had a feeding tube inserted hoping that would be the beginning of lung healing, although this is not the case. It has been horrible, with shortness of breath, and at times rushing to the ER because I could not catch a breath. All this time I have been on one antibiotic after another, going on 6 months now! The last two months have been Doxycycline 100 mg. twice per day. Obviously the feeding tube has not stopped the feeling of having constant Bronchitis and if I stop taking the Doxycycline, within two days the substance in my lungs begins turning in consistency to that of super-glue. I had a bronchoscopy done 10/2020, which found heavy e-coli in my lungs, and a sputum test revealed "MRSA" and "Stenotrophomonas Maltophilia." The pulmonologist and Infectious Disease doctors have both denied me any more antibiotics, and I understand their concerns, yet, they have no suggestions for me.
As I sit here, it is 3:00 a.m., and I can not sleep due to the gunk in my lungs making it hard to breath. If I quit taking the Doxycycline, I will be hospitalized within 2-days time, or at the Emergency Room again, in terms of not being able to clear the mucous and breathe. I have to go to urgent-care about once-per-month to have the antibiotics, and that doctor feels I should be on them until (if) this subsides.
I feel as if no-one cares about this condition, or, they know what it is but do not want to admit the truth that the radiation caused this. It must be aspiration causing this lung condition, as there was nothing wrong with my lungs before having radiation for cancer of the Pyriform Sinus (part of throat). The cancer is supposedly gone now, and I am thankful for that. I was a fitness nut, that exercised and ate a healthy greens diet, plus a non-smoker.
I asked the pulmonologist nurse before Thanksgiving what I am supposed to do with no antibiotics..."just die?" She laughed at that statement. Yet, they offered no alternative, or help. My ENT Doctor scopes me approximately every 3 months, and claims my throat is still extremely swollen, yet the swelling is subsiding very slowly. For 8 months I could only whisper, but now have my voice back. The ENT said he can finally see my vocal cords, but this thick mucous problem goes on. If you put your fingers on the depressed area of your throat--by the Trachea--that is the area where the mucous seems to be lodged. Again, as long as I am on antibiotics, the thick mucous can be coughed up with the help of a nebulizer of 7% saline. If I am not on antibiotics, the mucous turns into a cement-like substance, whereupon nothing will dislodge it. The hospital gave me IV antibiotics twice, which began clearing it up rather fast.
By the way, I have been to two Pulmonologists, and both are stumped. They both prescribed many different inhalers--Albuterol, Symbicort--others, and if this is any clue, these inhalers make my throat worse. In fact, the last time I used the albuterol was in desperation, and it almost closed up my throat totally. The second-opinion Pulmonologist described that reaction as "very interesting." Currently, not taking solids or liquids by mouth, in hopes this will go away.
Sorry to write all that! This has been submitted hoping someone will instruct me as to where to go from here? Another ENT, or another Pulmonologist?
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You sure have been through a lot and I hope you do get answers and relief from what your going through please let us know how your doing as I read what you wrote I sit hear crying because I’m new to this all myself I’m 54 yrs old and I’m on one medication for 2 months now first 5 days I lost my voice it came back about a week later and now after 2 months I’m coughing a lot lost my voice totally wheezing in my chest, coughing a lot seems I can’t get the phlem up. I haven’t been sleeping in my bed cause I dont want to wake up my husband I pray when I do sleep I wake up I’ve never felt like this ever Ive been so sad over this while thing and I’m not sure which way to go I have an appt Friday with a new pulmonologist at NYU to see what she says and my pulmonologist who put me on Arikayce I see In March. I feel like family n friends dont understands and I can’t blame them because me myself have never heard of MAC since August so I. really can’t enjoy family right now to well I have no voice to talk to them. I just want to feel normal again and be able to live life comfortably without coughing all day being exhausted from it. Thanks for listening
If they submitted part of the bronchial lavage sample for a MAC test, it would come back as a separate result. Do you have a portal that shows your test results & dates? If so look for one in December...
As for contrast vs non-contrast CT, I cannot answer - but if you have MAC/NTM that is progressing, the radiologist can usually see evidence of changes in your CT.
Sue
Dear Sue, You are most kind. Thank you so much. I will surely apply these when possible. My problem is I aspirate thin liquids, so although it is not very satisfying, I know that the nectar water is a must!!! Nice, hot coffee used to be a favorite, long ago! Oh well, I am alive. The Contagious Disease doctor called me back today (nurse) and explained that I was tested for MAC! I then asked her how that could be when according to the website for MAC, it requires more than one sputum test, not just a bronchial Lavage Fluid Test. She is going to ask the doctor that question. Also, the nurse said to have a non-contrast CT scan done to see if there have been any changes since the last CT scan. This friday I have a contrasted CT Scan due, and told her so. Then asked her if it being contrasted would be a problem? I thought the contrasted ones had better imagery. She is going to ask her that as well. So much to learn. Tis site is such a blessing to all people. Thank-you again.
I see it - I just wanted to know if you were tested for mycobacteria and pseudomonas. The results I see show that Those are two of the most likely culprits for lung infection in people with compromised lungs. They require a an actual culture of the sputum - not just the AFB test. The pseudo takes about 2-4 weeks to grow out, the mycobacteria, 6 weeks or longer. You could request culturing for those.
Since you have been treated with radiation, I would suggest you ask your radiologist or oncologist for referral to an ENT or Pulmonologist experienced in treating post-radiation issues. I am guessing the thick mucus is partly the result of your decision not to take liquids by mouth - my friend who had extensive radiation on her throat sips water all day to keep things moving.
Here are some things you can do to help thin the mucus - clearing it will help keep all kinds of bacteria from growing:
-drink water or an herbal tea from Traditional Medicinals called Breathe Easy - widely available in large groceries, health food stores and on-line
-an OTC med called MucinexLA (long acting guaiafenesin without decongestant added)
-airway clearance (example: https://connect.mayoclinic.org/discussion/lung-mucus-clearance-reducing-the-breeding-ground-for-mycobacterium/ )
-continue to use the nebulizer with saline solution
Let us know how you are doing.
Sue
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1 ReactionI posted the lab, now i do not see it...did you see that? Thank-you!
Thank-you. I hope you feel better also! Have you tried "Simply Saline?" It is in the medicine section of stores.
Hi I live in Pennsylvania my situation is breathing but related to nose so when I read your post about the mucus which I have a problem with but not in lungs yet . Hope you feel better soon
Dear Sue,
Here is the comment part.
1 Result Comment: Total Volume = 13mL
2 Result Comment: Performed At: CB LabCorp Dublin
6370 Wilcox Road Dublin, OH 430161269
Ricchiuti Vincent PhD Ph:8002827300
3 Result Comment: Detects Serotypes B and E. Detection of Serotype C may be
limited. If Adenovirus infection is suspected and a Not Detected
result is returned the sample should be re-tested for adenovirus
using an independent method (e.g. Viracor Eurofins Adenovirus
Quantitative Real-time PCR test).
4 Result Comment: This test does NOT assay for the novel 2019 Coronavirus out of
China. This test detects the respiratory Coronaviruses: types
229E, OC43, NL63, and HKU1.
5 Result Comment: The Respiratory Syncytial Viral assay detects both types A and B,
however it does not distinguish between the two.
6 Result Comment: Cross-reactivity has been observed between Klebsiella oxytoca and
the Klebsiella pneumoniae assay.
7 Result Comment: Detects methicillin-sensitive Staph aureus.
8 Result Comment: Staph aureus susceptibility/resistance is determined by
absence/presence of the mecA gene.
9 Result Comment: Panton-Valentine leukocidin is a virulence factor found in
Staphylococcus aureus; the presence of the gene may lead to a
more serious infection.
10 Result Comment: Cross-reactivity has been observed between Providencia stuartii
and the Pseudomonas aeruginosa assay.
11 Result Comment: Target Enriched Multiplex Polymerase Chain Reaction (TEM-PCR)
allows for the detection of multiple pathogens out of a single
reaction. This test was developed and its performance
characteristics determined by Viracor Eurofins. It has not been
cleared or approved by the U.S. Food and Drug Administration.
Results should be used in conjunction with clinical findings, and
should not form the sole basis for a diagnosis or treatment
decision
Microbiology Reports
TEST: Bronchial Culture w/GS Pnl
COLLECTED DATE/TIME: 10/28/20 8:50 AM
FINAL REPORT: Moderate Escherichia coli
.
Moderate Normal Respiratory Flora
TEST: Fungus Culture w/GS Pnl
COLLECTED DATE/TIME: 10/28/20 8:50 AM
FINAL REPORT: No Fungus Growth
Hello. I live in Indiana. Where are you located? Do different states have different levels of doctors?!!! If so, maybe I need to move!!!! Really, my ENT is a wonderful doctor, and after several misdiagnoses, he found the cancer. I owe God, and him, my life. Too bad he couldn't have become a Pulmonologist as well! I am sorry, but so far the pulmonology road has been a dead-end with no directions.
Dear Sue,
Here is a list. The rest was blood cell counts etc. If NTM is on here, I am not reading it correctly!
Thank-you.
By the way, I tested positive for covid "long-term antibodies. The pharmacist explained that the long-term means I had Covid months prior, not recently.
AFB Specimen Processing
LC
Concentration Call lab INLH Lab
COVID19SARSAgFIA Negative 3 (Normal is Negative) Nasopharyngeal INLH Lab
Adenovirus VC Not Detected 4 (Normal is Not Detected) BAL INLH Lab
Enterovirus/Rhinovirus
VC
Not Detected (Normal is Not Detected) BAL INLH Lab
Human bocavirus VC Not Detected (Normal is Not Detected) BAL INLH Lab
Human coronavirus VC Not Detected 5 (Normal is Not Detected) BAL INLH Lab
Human
metapneumovirus VC
Not Detected (Normal is Not Detected) BAL INLH Lab
Influenza A -Human VC Not Detected (Normal is Not Detected) BAL INLH Lab
Influenza A -H1N1-09 VC Not Detected (Normal is Not Detected) BAL INLH Lab
Influenza B VC Not Detected (Normal is Not Detected) BAL INLH Lab
Parainfluenza VC Not Detected (Normal is Not Detected) BAL INLH Lab
Respiratory Syncytial VC Not Detected 6 (Normal is Not Detected) BAL INLH Lab
Acinetobacter baumannii
VC
Not Detected (Normal is Not Detected) BAL INLH Lab
Bordetella pertussis VC Not Detected (Normal is Not Detected) BAL INLH Lab
Chlamydophila
pneumoniae VC
Not Detected (Normal is Not Detected) BAL INLH Lab
Haemophilus influenzae
VC
Not Detected (Normal is Not Detected) BAL INLH Lab
Haemophilus influenzae
B VC
Not Detected (Normal is Not Detected) BAL INLH Lab
Klebsiella pneumoniae VC Not Detected 7 (Normal is Not Detected) BAL INLH Lab
Legionella pneumophila
VC
Not Detected (Normal is Not Detected) BAL INLH Lab
Moraxella catarrhalisVC Not Detected (Normal is Not Detected) BAL INLH Lab
Staphylococcus aureus VC Not Detected 8 (Normal is Not Detected) BAL INLH Lab
MRSA VC Not Detected 9 (Normal is Not Detected) BAL INLH Lab
Panton-Valentine VC Not Detected 10 (Normal is Not Detected) BAL INLH Lab
Mycoplasma pneumoniae
VC
Not Detected (Normal is Not Detected) BAL INLH Lab
Neisseria meningitidis VC Not Detected (Normal is Not Detected) BAL INLH Lab
Pseudomonas aeruginosa
VC
Not Detected 11 (Normal is Not Detected) BAL INLH Lab
Streptococcus
pneumoniae VC
Not Detected (Normal is Not Detected) BAL INLH Lab
Streptococcus pyogen