Don't Know What to Do Next: COVID & Lung Conditions

Posted by thomason @thomason, Mar 21, 2021

Hello. I am a 62-year-old woman, and currently nebulizing with 7% to try and clear he mucus which is clogging my airways. This is the 3rd vial in an hour…help! So far, I have had a bronchoscopy done last year which showed e-coli in my lungs. After the procedure, the doctor did not make any follow-up appointments, and would not return my phone calls. This was extremely hurtful, as I did nothing to warrant this. My husband thinks he did this because he knows my condition can't be treated…It makes sense, because this condition has been going on for one year now, and is worsening. After developing lung infections last March 2020, it took awhile for both my husband and I to recover. I was admitted to the hospital with pneumonia, and they took a CT scan then. The hospital gave me IV antibiotics, and even though it cleared up most of the mucus, there was still mucus in my lungs upon discharge. My cough lasted for four months and ended up breaking three ribs from coughing. The cough went away, but in its place is this terrible mucus, which will not cough-up unless I am on antibiotics. Thus, about 50 ER visits later, and many different antibiotics, here I sit with my lungs sounding like a crackling seal barking. I tested positive for "Long-Term Covid Antibodies," so am assuming that the illnesses we both had last year was Covid. Recently, I found another Pulmonologist–the third one–and he really seemed to pay attention to this situation. He spent almost one hour going over all the medicines prescribed over the last year, and honesty LISTENED to me! When a person gets older, especially women, many doctors "Poo-Poo" everything they say. So, it was refreshing to find this doctor. He ordered three sputum tests, which are required for MAC Lung Disease diagnosis, and a CT Scan of the Bronchial Tubes. The MAC part of the test won't be back for about one month, but the initial test came back with "Moderate E-Coli" in my lungs. He then put me on Keflex 500mg. 3 x per day, which is A LOT. He knew that I had been on Keflex twice before to no avail, but went along with him because the dosage was higher. He also gave me Prednisone, which does help.

Today, the CT scan was released for me to see online, and it is extremely scary. Even though I don't smoke, it declares I have Emphysema. Here is part of the report:
FINDINGS:
"Lungs/pleura: Findings of centrilobular emphysema. There is mild bronchiolar dilatation without mucoid impaction involving both lower lobes. Additionally, there are vague areas of ground glass opacity involving primarily the right lower lobe and the right
middle lobe having increased since the prior study in the right lower lobe and which are new in the middle lobe. No effusions. No masses.
Airways: Patent. IMPRESSION:
1. Emphysema.
2. Changes of mild bronchiectasis involving both lower lobes.
3. Increasing/new ground glass density right lower and middle lobes suggesting an element of active pneumonitis with aspiration a consideration."

There are articles that state some radiologists are reading the CT Scans as Emphysema, when the lung changes are really from Covid. Before this started last year, I was a health nut. Exercise, Kale, I mowed one acre in the heat with a push mower, no problem…there was nothing at all wrong with my lungs. How can a person with that kind of history, suddenly have Emphysema? Last year when the other Pulmonologist did the Bronchoscopy, didn't he see anything? And, in the approximate 7 months since the last CT Scan, suddenly the prognosis changed to Emphysema? Today, I spent hours researching E-Coli in the lungs, and the articles claim it is very difficult to get rid of it, and it has a high mortality rate. This is especially true if the regimen of antibiotics was not started properly–strong enough—right type—mine was not. Now I find out that the new Pulmonologist is only in his office one week out of the month, since he partially retired. I did not know this when he was referred to me by the hospital ER staff. Obviously, my lungs are getting worse, and are slowly becoming destroyed. There is a horrible, sinking feeling in my gut as I sit here at 1:00am., because I feel like I am going to die if someone does not help me. Will one of you kind people give me some advice as to what to do next? By the way, I have been to two different Infectious Disease doctors, and they are aware of the E-Coli. They both said they would NOT give me antibiotics to treat the condition! Even when I explained that without the antibiotics, the mucus closes up my throat! The odd thing about all this, is all the research I have done gives the different types of therapies and medications usually prescribed for this type illness. None of these have been utilized by any of the doctors I have seen. They just keep giving my the same old antibiotics over and over. Why? What should I do? The Prednisone is almost gone, and it is starting to lose its effectiveness anyway. I am lost here. Please help me! God Bless You for listening.

Interested in more discussions like this? Go to the Lung Health group.

Hello all. I wanted to post this update, as it may help someone else in a similar situation. The past year has been really difficult with hospitalizations, ER visits,Stat-Care visits, Doctors visits, etc. Tons of different antibiotics, at least ten lung x-rays, 3 CT scans, all in an attempt to cure and find out the cause of this suffocating mucus/shortness of breath. After finishing radiation for throat cancer one year ago, and attempting to eat orally for about 4 months, it was finally determined to place a feeding tube to see if aspiration was the cause of the illnesses. Well, the condition did not improve, but at that point the doctors would not give me any more antibiotics, as they claimed it was not an infection. Even though they were all informed–Infectious Disease two different doctors, two different Pulmonologists–that every single time I would come off them, the mucus would become life-threatening.

Fast-forward to one month ago when I had my third "Barium Swallow Study." The doctor watching the screen was amazed, commenting in all his years of experience, he had never seen someone swallow so well after flunking the past two. The first one was almost total aspiration on liquids and solids. Approximately eight weeks later–and many throat exercises–the second study, I aspirated once on a piece of mushed up meat, with the rest being "Deep Penetration." That means the liquids and pudding consistency food was going down to the brink of the separation flap. They informed me that a person can live with that and still eat, with slick foods, thickened fluids, cautiously. The advice was followed, and the lung condition got worse again. At this point, it was getting somewhat clear that aspiration was the cause of the condition, yet having a sputum sample containing E-coli, meant there was indeed infection also present. Which way to turn?

Last week, I was hospitalized for four days, placed on IV Levofloxacin 700 mg. and Prednisone. The third Swallow Study was taken into account when my new Pulmonologist came into my room and bluntly told me these words: It is a quality of life issue here. "If you keep eating you will die. If you choose the feeding tube for all your sustenance, you will live." It now appears that aspiration was the cause of this condition all along, with the infection not helping. It was all like a "Perfect Storm." My Husband and I both contracted COVID last March 2020 while I was still undergoing radiation. The rest all happened like clockwork, one thing after another. At this point, and it is sad to say…I guess you can not trust the results of a Swallow Study. On the other hand, the "Ground Glass Opacity" that showed up on my last lung x-ray, can be caused from Covid and/or aspiration. There just does not seem to be any way to definitively say for sure that the condition is caused by one thing, or a combination of many factors.

The next step is to contact the Swallow- Study Therapist, and ask her if there isn't some kind of 100% definitive test to see if a person is aspirating. There is no way I am going to risk eating or drinking for another test, just to be gasping for life's vital breath. So for now, it is goodbye food, goodbye nice, hot coffee, goodbye cool water on a hot summer day (especially after mowing the lawn!) and learning a new way of life. Then, it will be certain that it is NOT from aspiration. Yesterday, I ate baby food. One hour later, my breath was extremely short, and panic set in. It was a small experiment, which has shown me much. I dare not risk that again, as my 700 mg. Levofloxacin tablets have only a few days left. The steroids run out in about six days. Of course, praying to our creator for an answer gave me that small, still inaudible voice that spoke to my heart. I felt God was telling me that I should not eat. Thank-you, for listening, and if you are interested, I will update after all the medicine runs out.

REPLY

@thomason– I can't imagine what you are going through and how scary your tests were. Have you stopped eating entirely? Is your feeding tube out?

REPLY
@thomason

Hello all. I wanted to post this update, as it may help someone else in a similar situation. The past year has been really difficult with hospitalizations, ER visits,Stat-Care visits, Doctors visits, etc. Tons of different antibiotics, at least ten lung x-rays, 3 CT scans, all in an attempt to cure and find out the cause of this suffocating mucus/shortness of breath. After finishing radiation for throat cancer one year ago, and attempting to eat orally for about 4 months, it was finally determined to place a feeding tube to see if aspiration was the cause of the illnesses. Well, the condition did not improve, but at that point the doctors would not give me any more antibiotics, as they claimed it was not an infection. Even though they were all informed–Infectious Disease two different doctors, two different Pulmonologists–that every single time I would come off them, the mucus would become life-threatening.

Fast-forward to one month ago when I had my third "Barium Swallow Study." The doctor watching the screen was amazed, commenting in all his years of experience, he had never seen someone swallow so well after flunking the past two. The first one was almost total aspiration on liquids and solids. Approximately eight weeks later–and many throat exercises–the second study, I aspirated once on a piece of mushed up meat, with the rest being "Deep Penetration." That means the liquids and pudding consistency food was going down to the brink of the separation flap. They informed me that a person can live with that and still eat, with slick foods, thickened fluids, cautiously. The advice was followed, and the lung condition got worse again. At this point, it was getting somewhat clear that aspiration was the cause of the condition, yet having a sputum sample containing E-coli, meant there was indeed infection also present. Which way to turn?

Last week, I was hospitalized for four days, placed on IV Levofloxacin 700 mg. and Prednisone. The third Swallow Study was taken into account when my new Pulmonologist came into my room and bluntly told me these words: It is a quality of life issue here. "If you keep eating you will die. If you choose the feeding tube for all your sustenance, you will live." It now appears that aspiration was the cause of this condition all along, with the infection not helping. It was all like a "Perfect Storm." My Husband and I both contracted COVID last March 2020 while I was still undergoing radiation. The rest all happened like clockwork, one thing after another. At this point, and it is sad to say…I guess you can not trust the results of a Swallow Study. On the other hand, the "Ground Glass Opacity" that showed up on my last lung x-ray, can be caused from Covid and/or aspiration. There just does not seem to be any way to definitively say for sure that the condition is caused by one thing, or a combination of many factors.

The next step is to contact the Swallow- Study Therapist, and ask her if there isn't some kind of 100% definitive test to see if a person is aspirating. There is no way I am going to risk eating or drinking for another test, just to be gasping for life's vital breath. So for now, it is goodbye food, goodbye nice, hot coffee, goodbye cool water on a hot summer day (especially after mowing the lawn!) and learning a new way of life. Then, it will be certain that it is NOT from aspiration. Yesterday, I ate baby food. One hour later, my breath was extremely short, and panic set in. It was a small experiment, which has shown me much. I dare not risk that again, as my 700 mg. Levofloxacin tablets have only a few days left. The steroids run out in about six days. Of course, praying to our creator for an answer gave me that small, still inaudible voice that spoke to my heart. I felt God was telling me that I should not eat. Thank-you, for listening, and if you are interested, I will update after all the medicine runs out.

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So so sorry to read about all that you have been going through. It must be so discouraging. Will be praying for your condition and please provide an update after completing medication. Will be looking for that and hoping for an improving situation for you……

REPLY

Dear gej53, Thank-you. It is more confusing than anything. You are told you passed the swallow test, then doctor says no food/drink. I would rather live and breathe than eat and drink. Thank-you for your kindness. We all have problems, just different. You are in my prayers as well. Ipray for all the lovely souls on here that care about each other. This site is like a little slice of what heaven must be like…everyone loving one another.

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@thomason

Dear gej53, Thank-you. It is more confusing than anything. You are told you passed the swallow test, then doctor says no food/drink. I would rather live and breathe than eat and drink. Thank-you for your kindness. We all have problems, just different. You are in my prayers as well. Ipray for all the lovely souls on here that care about each other. This site is like a little slice of what heaven must be like…everyone loving one another.

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@thomason. You said it so well. We all are hoping the best for you.

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@merpreb

@thomason– I can't imagine what you are going through and how scary your tests were. Have you stopped eating entirely? Is your feeding tube out?

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Dear Merry Mentor, Thank-you, for asking and being a caring person! Yes, after a baby food experiment, my breathing was so bad afterward I almost went to the ER. So no more food or fluid…at least until the Pulmonologist explains everything at next appt., around end of April. After a few days now with no oral intake, my breathing is 90% better. Yet, it is confusing because in the back of my mind, the thought goes round and round that maybe its actually the antibiotics finally kicking in. This is probably wishful thinking!!! The feeding tube is still in place, and looks like it will be around awhile! Oh well. There are so many hurting people, in much worse condition. I feel blessed to have met you and all the other wonderful people. If it were not for this illness, that never would have happened! I thank God for all the mentors helping the hurting people on this amazing site.

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@thomason– I'm sorry to hear this. Why do you think that there may be a connection with the antibiotics?

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Dear merpreb, Merry Mentor, Think I worded that wrong! I meant to say that breathing may be better because the new antibiotic is eradicating the lung infection–E-coli. If that is the case, then aspiration is not the cause of the condition, rather the infection. At this point, the doctor isn't sure, even with the positive Swallow-Study. Thank-you for concern.
P.S. Will talk to Speech Pathologist soon to get her valued opinion. The big question i have for her is whether there is a 100% definitive test for lung aspiration, since the Swallow-Study is obviously not! Thanks again.

REPLY
@thomason

Dear merpreb, Merry Mentor, Think I worded that wrong! I meant to say that breathing may be better because the new antibiotic is eradicating the lung infection–E-coli. If that is the case, then aspiration is not the cause of the condition, rather the infection. At this point, the doctor isn't sure, even with the positive Swallow-Study. Thank-you for concern.
P.S. Will talk to Speech Pathologist soon to get her valued opinion. The big question i have for her is whether there is a 100% definitive test for lung aspiration, since the Swallow-Study is obviously not! Thanks again.

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@thomason– There are several types of aspirations. As I mentioned in a previous post-E-Coli lung infections are picked up from hospitals and other places, or even for UTI's.
E Coli infections in the lungs are also associated with pneumonia. Was there any finding of that at all? I'm sure that the infection also wreaked havoc on your lungs with tons of inflammation.

My mom worked with a Speech Pathologist for the same problem of aspriation. It worked very well.

REPLY
@merpreb

@thomason– There are several types of aspirations. As I mentioned in a previous post-E-Coli lung infections are picked up from hospitals and other places, or even for UTI's.
E Coli infections in the lungs are also associated with pneumonia. Was there any finding of that at all? I'm sure that the infection also wreaked havoc on your lungs with tons of inflammation.

My mom worked with a Speech Pathologist for the same problem of aspriation. It worked very well.

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Dear merpreb Merry Mentor, The CT Scan that initiated my last hospital stay last week, showed the following:
IMPRESSION:
1. Emphysema.
2. Changes of mild bronchiectasis involving both lower lobes.
3. Increasing/new ground glass density right lower and middle lobes suggesting an element of active pneumonitis with aspiration a consideration.

The doctor stated he would re-test sputum for E-coli at next appointment. You are so right about picking it up in the hospital, for it makes senses since I was in one 5-days per week getting radiation.

You kindly explained that the Ground Glass Opacity, could be from the Covid, and the Pulmonologist stated he does not know if it is from Covid, or aspiration. Did your mom ever regain her ability to eat? Did she also pass a Swallow-Study, only to be told not to eat/drink? I am very curious! Thanks.

REPLY
@merpreb

@thomason– There are several types of aspirations. As I mentioned in a previous post-E-Coli lung infections are picked up from hospitals and other places, or even for UTI's.
E Coli infections in the lungs are also associated with pneumonia. Was there any finding of that at all? I'm sure that the infection also wreaked havoc on your lungs with tons of inflammation.

My mom worked with a Speech Pathologist for the same problem of aspriation. It worked very well.

Jump to this post

Dear merpreb,
It is Wednesday morning and unfortunately, the breathing issue has returned. Can't catch breath, very heavy, can't sleep. Funny (not really) how the breathing will seem pretty good for one day, then, Wham. It hits again for no apparent reason. Now I have to ask myself why? No food, no liquids, yet here we go again. My pulmonologist is only in one week per month as he came back out of retirement. However, his office can reach him all the time, so i left a message asking about Anoro Ellipta, which was mentioned on this site as beneficial at opening up airways. The reason I am so nervous is because rescue inhalers do absolutely nothing to help, so if my breathing gets critical, I have nothing to turn to. They will not give me oxygen because my levels are always 97% or above—which is totally weird how that can even be! So, wondering if I buy my own oxygen machine, would that help me in a breathing emergency? It would be great to know there is something there to help me in an emergency, as I live rural, and at least 15-minutes from any help. Well, sorry to be such a bother and go on, but this issue will not let up. Maybe the Prednisone is causing the labored breathing, as the mucus is pretty well gone due to the antibiotic. I went from 10 mg. 3 x daily, to 10 mg. 2 x daily yesterday. Will be happy to be off them, if possible. Thanks for listening, and all you do.

REPLY
@thomason

Dear merpreb,
It is Wednesday morning and unfortunately, the breathing issue has returned. Can't catch breath, very heavy, can't sleep. Funny (not really) how the breathing will seem pretty good for one day, then, Wham. It hits again for no apparent reason. Now I have to ask myself why? No food, no liquids, yet here we go again. My pulmonologist is only in one week per month as he came back out of retirement. However, his office can reach him all the time, so i left a message asking about Anoro Ellipta, which was mentioned on this site as beneficial at opening up airways. The reason I am so nervous is because rescue inhalers do absolutely nothing to help, so if my breathing gets critical, I have nothing to turn to. They will not give me oxygen because my levels are always 97% or above—which is totally weird how that can even be! So, wondering if I buy my own oxygen machine, would that help me in a breathing emergency? It would be great to know there is something there to help me in an emergency, as I live rural, and at least 15-minutes from any help. Well, sorry to be such a bother and go on, but this issue will not let up. Maybe the Prednisone is causing the labored breathing, as the mucus is pretty well gone due to the antibiotic. I went from 10 mg. 3 x daily, to 10 mg. 2 x daily yesterday. Will be happy to be off them, if possible. Thanks for listening, and all you do.

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@thomason– Oh, dear. Not good. Do you think that it's because the prednisone is at a lower dose and maybe that the swelling has returned and this is why breathing is more difficult?

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