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.

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Dear merpreb, Definitely, yet the drug is such a double-edged sword. I read that one one hand it alleviates swelling. On the other hand, it can cause chest heaviness. Why would swelling be increasing at all one year out of radiation. Isn't it suppose to go down with time? Must either be the Covid from last year, or the infection is still there. Wondering what criteria for Trach Tube. Would it even help me in this situation, or would breathing still be difficult because of swelling? Too bad there isn't another drug that reduces swelling without side-effects of Prednisone. Thanks.

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@thomason

Dear merpreb, Definitely, yet the drug is such a double-edged sword. I read that one one hand it alleviates swelling. On the other hand, it can cause chest heaviness. Why would swelling be increasing at all one year out of radiation. Isn't it suppose to go down with time? Must either be the Covid from last year, or the infection is still there. Wondering what criteria for Trach Tube. Would it even help me in this situation, or would breathing still be difficult because of swelling? Too bad there isn't another drug that reduces swelling without side-effects of Prednisone. Thanks.

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I'm sorry to hear of your difficulty coming back. I just read of the decrease in prednisone - perhaps a slower taper would reduce the symptoms? It is at least a question for the doc.
As a person with asthma/bronchiectasis, I will tell you that breathing issues are a daily mystery. For example, yesterday afternoon, I was sitting on the patio, playing a game with friends, and suddenly could barely catch my breath - an hour later, walking home, I was just fine. I know from experience that a rescue inhaler might have helped, and a check of my O2 sats would have shown them to be above 90%. The pulmonologist has no explanation either.
I have a friend who is 7 years post-chemo, post-radiation for throat & thyroid cancer - she had a feeding tube for about 4 years before she was able to transition to a liquid diet, and even now, she must be extremely careful about aspiration. Another acquaintance was never able to change, has always had to use a feeding tube. I don't think that part of your situation is uncommon.
The human body is an amazing and complex organism, and the more doctors and scientists learn about it, the more mysteries they find.
Sue

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Dear Sue,
I agree about the slower taper and will ask doctor. Do your breathing issues worsen at night, like mine do? It always seems to worsen around 6:00 p.m. While in the hospital, the pulmonary unit sent up a nurse that told me maybe I wasn't inhaling the rescue inhaler properly. The nurse explained about using the spacer, so the medicine goes into lungs and not just the throat. The nurse stood there and watched me do two big inhales with the spacer, then witnessed my breathing go south. It was bad Some people have this reaction for unknown reasons. Thank-you, Sue, for being a caring person.

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@thomason

Dear Sue,
I agree about the slower taper and will ask doctor. Do your breathing issues worsen at night, like mine do? It always seems to worsen around 6:00 p.m. While in the hospital, the pulmonary unit sent up a nurse that told me maybe I wasn't inhaling the rescue inhaler properly. The nurse explained about using the spacer, so the medicine goes into lungs and not just the throat. The nurse stood there and watched me do two big inhales with the spacer, then witnessed my breathing go south. It was bad Some people have this reaction for unknown reasons. Thank-you, Sue, for being a caring person.

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Hi, @thomason. I don't have nearly as much knowledge as some of the wonderfully, sharing and giving people here who have helped me immensely since I was diagnosed with bronchiectasis in October but one thing that has helped me with inhalers and nebulizing is making sure that I am only breathing in through my nose. My first CT scan showed that my esophagus "sits funny," whatever that means and I have always had sinus issues so was in the habit of breathing through my mouth (also a terrible snoring problem since childhood). The first month of trying out inhalers sent me to the ER three times because I was breathing in through my mouth and it was swelling up my larynx so I was not getting air through the top of my throat and not getting the medicine into my tubes and lungs. I was fighting mad because I felt like everything the doctors were giving me was making me worse and was feeling pretty helpless. This one small change, that I really have to concentrate on, has made a world of difference in my life. Wishing you all the best and praying for some answers and relief for you. ~Echo

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@coco1970

Hi, @thomason. I don't have nearly as much knowledge as some of the wonderfully, sharing and giving people here who have helped me immensely since I was diagnosed with bronchiectasis in October but one thing that has helped me with inhalers and nebulizing is making sure that I am only breathing in through my nose. My first CT scan showed that my esophagus "sits funny," whatever that means and I have always had sinus issues so was in the habit of breathing through my mouth (also a terrible snoring problem since childhood). The first month of trying out inhalers sent me to the ER three times because I was breathing in through my mouth and it was swelling up my larynx so I was not getting air through the top of my throat and not getting the medicine into my tubes and lungs. I was fighting mad because I felt like everything the doctors were giving me was making me worse and was feeling pretty helpless. This one small change, that I really have to concentrate on, has made a world of difference in my life. Wishing you all the best and praying for some answers and relief for you. ~Echo

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Dear Echo R, Thank-you, for the heads up! May I inquire as to how you now take your inhaler? Thank-you, for kind words too! We are all in the same boat called Life."

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@thomason

Dear Sue,
I agree about the slower taper and will ask doctor. Do your breathing issues worsen at night, like mine do? It always seems to worsen around 6:00 p.m. While in the hospital, the pulmonary unit sent up a nurse that told me maybe I wasn't inhaling the rescue inhaler properly. The nurse explained about using the spacer, so the medicine goes into lungs and not just the throat. The nurse stood there and watched me do two big inhales with the spacer, then witnessed my breathing go south. It was bad Some people have this reaction for unknown reasons. Thank-you, Sue, for being a caring person.

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@thomason- It can be very awkward to use an inhaler.I found that using a spacer at the beginning was very helpful. this a video about it.

Here's one about your metered dose inhaler

https://www.youtube.com/watch?v=tp479j15x6Q&ab_channel=NucleusMedicalMedia
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@merpreb

@thomason- It can be very awkward to use an inhaler.I found that using a spacer at the beginning was very helpful. this a video about it.

Here's one about your metered dose inhaler

https://www.youtube.com/watch?v=tp479j15x6Q&ab_channel=NucleusMedicalMedia

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Thank-you! I am doing it right, the rescue inhaler just does not help me at all. Sure wish it did for peace of mind...I did retry the "Yupelri" nebulizer vial, and it does help. It is the only one that does, but as most of them, you can only nebulize it once-per-day. Thank-you, for being a caring person.

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@thomason

Thank-you! I am doing it right, the rescue inhaler just does not help me at all. Sure wish it did for peace of mind...I did retry the "Yupelri" nebulizer vial, and it does help. It is the only one that does, but as most of them, you can only nebulize it once-per-day. Thank-you, for being a caring person.

Jump to this post

Have you reported that the rescue inhaler doesn't seem to be doing anything for you? YOu shouldn't be taking medications that don't work. How often do you do your rescue inhaler?

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Hi thomason, just saw your post. I turn age 80 this year, have had asthma since age 2. My “peak” on a peak flow meter (range 0 to 800) has never, ever gone higher than 300. I use a really cool battery power pocket inhaler/nebulizer containing a vial of Albuterol abt 4 times per day. It has a 3” spacer. But I only take ONE puff though doc said to use full vial. I also take one puff of Symbicort morning and evening. I find that using a full vial of Albuterol speeds me up too much. I also take a puff abt 2:30 AM when I have take my dogs out. I am a choral singer and am learning “belly breathing” which pulls the diaphragm down, bringing in more air. Belly breathing involves sucking in as much air as possible, even if you think you’ll bust (!) and holding it in as long as possible! Apparently I’ve been shallow breathing for all my life. Belly breathing definitely helps to get more oxygen which makes me feel a lot better. As for mucus, I buy a store brand (Walmart) mucus relief liquid (green label) and take an swig morning and evening. I also wear a Medic Alert wrist band that details my allergies, etc. I also have PMR. Hope my info is helpful to you. Cheers!

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Dear merpreb, I do not use any of the inhalers at all. When you explain they don't work--and actually make my breathing worse--the doctors act like you are from Mars! So, yes, I have nothing to fall back on. You kindly sent me a connection to a doctor that deals with Post-Covid, the "Survivors Corps," and my appt. is in June. I just called and the office said they will try to get me in sooner. Thank-you, Merry Mentor. You are a Godsend to so many people.

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