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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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@anonymous217382 Connie...after reading your above post, I just wanted to chime in how sorry I am for your issues. It certainly seems that a caring Dr is in order and hopefully can get you on course. I wish I had personal suggestions for you but can only say that if you go to a clinic like Mayo....the Doctors seem to work together to get to the bottom of a situation instead of just selecting yet another pulmonologist that does not have the experience with you current affliction.Might be worth the trip. I wish you the very best and I hope you start to feel better. Kate
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1 ReactionThank you I research some not great at research I had a bronchoscopy in aug and that what it said on my paper work MAC-MAI it’s so frustrating all of this you know I just want some relief and if my pulmonologist gives me no relief or answers I’m also going to another dr in Manhattan on Friday which I’ve never went to so will see Connie I just want to thank you for responding back to me it means so much to me I will let you know how I made out I agree this is all wierd it’s crazy.
Jennifer, this MAC disease is all new to me. The weird thing is, I have been researching my symptoms for over one year, almost daily. The search terms would change so I could get different results. Yet, in all this time, MAC never showed up...It is like the Great Oz behind the internet controller curtain decided to let the information out at his timing and will. How could it have not shown up in all that time?
Jennifer, all i know about this MAC is what i have read, and so far the people that have it claim to be on 3 different antibiotics at once, for many months. You need to ask your doctor why you are only on one. Also, it isn't good to be on steroids long-term, is it? Have you had sputum tests done to see which bacteria you have so the correct antibiotic is given, or was that determined by the bronchoscopy only? I have been on many different antibiotics going on one year, so I can certainly relate to your frustration. As for the Thoracic Surgeon, (I looked it up!) what does your spine have to do with the lung condition? I wish you the best tomorrow. May God lead you in the correct direction, and that you feel better.
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1 ReactionThanks fir the positive quote I’m actually sitting here crying I just can’t wait to see one of my drs I’m not one to complain at all but I just feel there has to be something eles besides the Arikayce I’m on to help me I’m sure I will know soon. Well back in December 2019 I had a bad cold just thought it was a usual sinus infection thing going on well my regular md had given me a z pack well within about 5 days I was wheezing when I made another appt with her she sent me for a chest x ray she said I have pneumonia I never had that ever. So she gave me leviquin and predisone I didn’t feel myself after that medication so she gave me a higher dose prednisone she then sent me for another X-ray and said she still sees fuzziness in my lung Rt do I was told go see a pulmonologist so I did he said let’s put you on a stronger dose of the leviquin antibiotic and predisone which I was actually starting to feel myself however he sent me for a ct scan month later which showed a nodule he said kept me in predisone and did another ct scan month later says it actually grew the nodule then said go to see the thoracic surgeon he referred me to he went over all my scans and said take it out let’s do surgery abs do this soon because I’m moving to another state n.j. So I said let me go for a second opinion and I did at Sloan the dr I saw did a bronchoscopy this past aug and he said I have MAC/MAI that’s when I found another pulmonologist here where I live and he said you need to be on Arikayce 12/18 months I started in December that we just passed 2 months ago but I’m so congested from it coughing lost voice I’m going to call tomorrow I am so so upset today I feel so alone and sad thanks for listening again
Hello Jennifer,
I am sorry you are suffering, yet there is one thought I try to hang on to: Nothing lasts forever. That may sound cheap, but it is true. Somehow, one day, this will all be a distant memory, or maybe no memory of it at all! What happened to you to bring this on? With me, it is hard to say. This is because I came down with a severe lung infection last March 2020, while undergoing the last two weeks of my 35 week radiation treatments. My husband came with me everyday and sat in the waiting area. He also came down with the lung infection. It was a horrible cough that went on for over 3 months. The cough was so bad that I broke 3 ribs in my back. Now, after being tested for the Covid antibody at Kroger for $25.00, it is obvious that this was the Covid virus. My antibody test came back positive for "long-term" antibodies. This means I had the virus some time ago--not recently. After the coughing part went away, this congestion did not, it got worse. The doctors theorized I was aspirating due to a swollen throat from the radiation, so I had a feeding tube inserted. The congestion did not improve at all. So, like a detective, it is an ongoing mystery! Hopefully, the Infectious Disease doctor will give me the numerous sputum tests needed to see if I have MAC. For some reason, I had to tell her that more than one sputum test is required to determine MAC. The whole situation is depressing for sure. Maybe in the Springtime you will feel better! What is it that you suffer from? Thank-you for the reply.
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!