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

Posted by thomason @thomason, Mar 21 12:04am

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.

@jr2366

Have you tried loosing up that phlegm with any musinex and maybe you have also reflux because I also was coughing like crazy especially before bed and I took these and it helped look into these it’s worth a shot

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Thanks for caring! These products do not work for me unfortunately At night especially, it feels like I am trying to draw air through a straw the size of an ink-pen straw. The mucus just makes it worse. If I can cough it up, then my throat is somewhat clear to breathe…for about another hour. It builds right back up, but the airway is still swollen and hard to breathe. Thanks Jennifer. I hope you found an answer to your problem .

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@rvan

Maybe you could try a NAC supplement, I know others on here have had good luck with it .

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Wow, thanks. Will check it out for sure. ANYTHING that may help is worth a try!

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@oldkarl

@thomason I surely comprehend your thoughts. I have many genetic issues which have been slow to take root and work on me. Gelsolin, LGMD, etc. Sometimes it is hard just to keep going. The doctors I am forced by circumstances to use seem to have no comprehension of the real issues. And the more I earn about these things the more discouraged I become. And society seems determined to demonstrate hatred toward those who reveal any weakness based on genetics. I have been forced to change my life repeatedly because someone in power knows how to hate. Anyway, hang in there. It will all be over too soon anyway.

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Thank-you so much! I like your way of thinking. Somehow, the words "It will all be over too soon anyway," are strangely comforting! You are going through so much. Thanks for caring.

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Hi, @thomason, Goodness, I am sorry that you are going through such a very concerning time. This is one of those times when I wish I could offer some tangible help but can only hope you'll continue to stay very proactive in your talks with and questions to your docs. Hope you'll stay in touch and let us all know how you are doing. You'll be in my thoughts as I hope you'll be given a treatment plan that works and brings relief from the coughing and mucus.

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@fiesty76

Hi, @thomason, Goodness, I am sorry that you are going through such a very concerning time. This is one of those times when I wish I could offer some tangible help but can only hope you'll continue to stay very proactive in your talks with and questions to your docs. Hope you'll stay in touch and let us all know how you are doing. You'll be in my thoughts as I hope you'll be given a treatment plan that works and brings relief from the coughing and mucus.

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Thanks, I definitely will! : )

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If you fail to connect with your newest pulmonologist within the next few days, please consider contacting the nearest facility on the Covid survivors network of specialty providers. It looks like you need to be connected to someone who recognizes the after-effects of Covid-19 in the lungs. Here is the link to Indiana facilities: https://www.survivorcorps.com/pccc-in
Sue

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@sueinmn

If you fail to connect with your newest pulmonologist within the next few days, please consider contacting the nearest facility on the Covid survivors network of specialty providers. It looks like you need to be connected to someone who recognizes the after-effects of Covid-19 in the lungs. Here is the link to Indiana facilities: https://www.survivorcorps.com/pccc-in
Sue

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This is fantastic. Thank-you so much for the invaluable connections, as I had no idea such places existed. Tomorrow, I will definitely call. This evening, I went to STATCARE and the doctor on call gave me a steroid shot, with the promise that I will come to ER if my breathing does not improve, or the shot wears off and no better. It looks like a hospital stay may be in my near future. That is a good thing at this point, and I will call the numbers you gave me first thing to see how this can all be coordinated. You are a blessing to people. Thank-you a million times!

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@thomason

This is fantastic. Thank-you so much for the invaluable connections, as I had no idea such places existed. Tomorrow, I will definitely call. This evening, I went to STATCARE and the doctor on call gave me a steroid shot, with the promise that I will come to ER if my breathing does not improve, or the shot wears off and no better. It looks like a hospital stay may be in my near future. That is a good thing at this point, and I will call the numbers you gave me first thing to see how this can all be coordinated. You are a blessing to people. Thank-you a million times!

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@thomason– Good morning. I am so happy that you keep pushing for answers and treatments. This will see you well on this journey. I hope that your shot helped and that you are more comfortable. One more thing, I keep all of my lab, blood, and treatment reports. You are entitled to copies of everything.
Have you done this?
Will you keep us informed?

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Yes, I keep all the reports and put them in files. Thank-you, for caring about others. I will certainly keep you all informed. Thank-you, again for being a superb person!

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I guess I am luck. I have diferent simtums . My lungs are not filling up with fluid. Mine is more like a rock that will not come out. I wish mine would loosen up. The only drug that worked for me was azithromycin. These DR's that don't hear u are very frustrating . I went for 15 years on antibiotics before they finally figured out what i had.They sent me to a nut dr. They asked my wife if I was loosing it. You know there is somthing not right but they are not hearing u. Change dr"s there are some good ones out there. You will get on top of this .all the best garry

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@thomason – I just read your story and the conversations that followed.
I’m getting very upset on your behalf- basically being ignored by doctors- except the ER doctor. I don’t know if it happens because you had Covid- I read a lot of medical articles about Covid after the acute phase. It almost appears as if doctors are like deer in headlights, not knowing what to do. However, it seems to be more pressure on doctors to treat what is acutely ailing the patient- in your case you need to get help to heal your lungs.
Prednisone will help a short time. It may be a relief to get into the hospital. Respiratory therapists can do a lot to help get rid of the mucous. If you don’t go into the hospital, ask for a referral to a respiratory therapist.
I’m glad you keep all reports.
Great link you got from Sue! Sue is amazing in navigating through anything Covid!
Wishing you well!

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I think you and traded a few messages when I was dealing with debilitating mucous a few weeks ago (I was up all night, trying to breathe, crying, certain I was dying). I am better now (still have some mucous), but it is less and has become manageable. My pulmonologist did long and strong blast of Prednisone with a long taper (and that knocked a lot of the mucous out). Now he has me on a long, strong course of Doxycylene (and after two days I’m seeing more improvement). I’ve started taking 1200 mg of Mucinex 2x daily, plus NAC. Though I tested negative in late December, like you, I think I may have had Covid in Sept/Oct. When I think back, I felt terrible back then; soaking night sweats, chills, fatigue. Anyway, not sure of your resources or insurance, yet when I was in that really bad place … my next plan was to get myself to Nation Jewish in Denver, or to Mayo in Jacksonville (I could drive there in a few hours). Though I am doing better, those are still options if I slip back to that miserable place. Best wishes and keep us posted.

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