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 Support Group.

@thomason

Dear Ingegerd, I have been admitted to the hospital, and am now on IV antibiotics. The name of it is Levofloxacin. So, I am thanking God I live in America, where there is access to good healthcare. Why the other doctors would not treat me, is a mystery. One day I hope that the mystery will be solved, because I really want to know why. Is our society becoming pick and choose as to who will live and who will not live? Please don't get upset on my behalf, as there are many people that have far worse stories to tell. One day, God will reveal the truth of everything, that is my belief.

Thank-you for the wise words. It is too bad that Prednisone makes a person feel good, and yet has so many side-effects if taken too long. The veterinarian put my cat "Runty Bunty" on Prednisone for Irritable Bowel Syndrome. Even though the amount in small, his bones are starting to show through his fur. It is hard to watch, because he was in an abandoned litter, so I bottle-fed the litter from the time they were 2 weeks old. It is difficult to describe the attachment one feels for a little kitty, but attached I am.

Getting on to more positive notes, yes, Sue is a keeper! I am going to thank her again for the resources she supplied to me. I called this morning, and already have an appointment set up in June (soon as they could get me in, on cancellation list) with a Pulmonologist that deals with Covid. Because I was not in an ICU when I had Covid, I do not qualify for the program, but it is the same doctor, so that is great! Ingegerd, wishing you well too! Thanks again for your kindness. You need to be cloned.

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@thomason- Good morning. I am so glad that you are feeling better. Who was it that hospitalized you? It might be too early to tell but do your doctors think that this is COVID-19 related?

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Good Morning to you Merry Mentor. The Pulmonologist admitted me, and will see him today some time. I will ask him if he thinks it is Covid related for sure. Will post his answer! Thank-you for thinking of me!

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@merpreb

@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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Hello. Here is an update as of today, March 23rd. The doctor came in and told me that my bronchial tubes are damaged from the constant lung infections. He then removed me from the oral regular diet, back to all feeding tube. No food, or liquids by mouth at all. This is odd, since I recently passed a barium swallow-test. There was no aspiration whatsoever. Also, when this was still going on months ago, the feeding tube was surgically implanted due to their thoughts that aspiration was causing the lung problems. After using the tube solely for months--no food or water by mouth--the lung issue did not go away one bit. The doctor also told me that antibiotics are not going to help me. I asked him why they keep the mucus thin enough to cough up, and he did not have the answer to that. He said that after keeping me on the once-per-day, 750 Mg. Levofloxacin for a few days, he is sending me home with a vibrating vest and steroid medication. I asked him if Covid caused this, and he said there is no way to know the answer to that. My husband and daughter have given me a list of questions to ask him tomorrow (I assume I will be released). #1. Is he going to retest my sputum to see if the antibiotic killed the E-coli? #2. Will he prescribe oxygen? #3. What is the plan if the E-coli is still there? #4. I researched online about Intravenous Immunoglobulin therapy, and other antibiotics that treat E-coli specifically. Why hasn't he utilized these, and will he if the E-coli is still in my lungs? He told me that he would not prescribe anymore antibiotics, so I am very confused, once again! Thank-you, for listening to my woes! Take care everyone.

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@thomason - So many changes! Feeding tube again- that must be a disappointment. They just don’t want to take any chances when you are so fragile.
Good that you are going home with a vibrating vest! They are very helpful in loosening mucous.
There may be a couple of reasons why they won’t give more antibiotics now to eradicate E.coli- First off - the other drugs that you have researched have potentially serious side effects, esp. kidney damage. It is also possible that E.coli is not likely to cause severe infection, compared to other bacteria that cause lung infection.
Good that your husband and daughter will help you get answers!
Let’s hear from you again after you are home again!

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Dear Ingegerd,
Thank-you for tips. I understand your thought process with the e-coli, but after researching it online, is it not something you do no want in your lungs? Can't that be what is causing all of this? He did ask one other question. He asked if when the Bronchoscopy was done last October, did my lungs feel any better afterward? This is because of the "Lavage" the washing that the doctor does to get a sample...i think. Anyway, no, they felt no different. Maybe he wants to perform another one to try and wash the mucus out??? Is that even possible? Well, take care, and thank-you for caring!

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@thomason

Hello. Here is an update as of today, March 23rd. The doctor came in and told me that my bronchial tubes are damaged from the constant lung infections. He then removed me from the oral regular diet, back to all feeding tube. No food, or liquids by mouth at all. This is odd, since I recently passed a barium swallow-test. There was no aspiration whatsoever. Also, when this was still going on months ago, the feeding tube was surgically implanted due to their thoughts that aspiration was causing the lung problems. After using the tube solely for months--no food or water by mouth--the lung issue did not go away one bit. The doctor also told me that antibiotics are not going to help me. I asked him why they keep the mucus thin enough to cough up, and he did not have the answer to that. He said that after keeping me on the once-per-day, 750 Mg. Levofloxacin for a few days, he is sending me home with a vibrating vest and steroid medication. I asked him if Covid caused this, and he said there is no way to know the answer to that. My husband and daughter have given me a list of questions to ask him tomorrow (I assume I will be released). #1. Is he going to retest my sputum to see if the antibiotic killed the E-coli? #2. Will he prescribe oxygen? #3. What is the plan if the E-coli is still there? #4. I researched online about Intravenous Immunoglobulin therapy, and other antibiotics that treat E-coli specifically. Why hasn't he utilized these, and will he if the E-coli is still in my lungs? He told me that he would not prescribe anymore antibiotics, so I am very confused, once again! Thank-you, for listening to my woes! Take care everyone.

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@thomason Sounds like you need a good geneticist, get in touch with Nebular or Sequencing or another company like that to learn your whole genome package. Then they can tell you what is likely the problem. Not one regular MD in 1000 has a clue.

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Dear oldkarl, Really...hmmm. That is something I will definitely look into. Sounds very thorough and uniquely modern. Thank-you for the caring thoughts! I hope you are doing better too.

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@thomason

Dear oldkarl, Really...hmmm. That is something I will definitely look into. Sounds very thorough and uniquely modern. Thank-you for the caring thoughts! I hope you are doing better too.

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@thomason @oldkarl I highly recommend oldkarl's advice about the genetic sequencing. I've just recently started talking to a geneticist and it's fascinating. It kind of shows you what you're up against and what to be mindful of. I did mine through selfdecode.com. I don't know who's better or who to recommend but I bet any of these three mentioned would serve you well. Nan

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@thomason

Dear oldkarl, Really...hmmm. That is something I will definitely look into. Sounds very thorough and uniquely modern. Thank-you for the caring thoughts! I hope you are doing better too.

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@thomason Truth is, at my age and the packages of DNA issues I have, just to know I am alive is about all I can ask for. And I was able to walk (with a rolling walker, of course) about a mile today. When I was born, the doc told my folks I would never see my 3rd birthday.

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@thomason

Dear oldkarl, Really...hmmm. That is something I will definitely look into. Sounds very thorough and uniquely modern. Thank-you for the caring thoughts! I hope you are doing better too.

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Here is a link to how and why DNA sequencing can help in diagnosis and treatment. It may not be easy to find help because this methodology is still in its infancy.
https://individualizedmedicineblog.mayoclinic.org/2019/04/23/editorial-why-dna-sequencing-is-an-effective-tool-for-patient-care/

Sue

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