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.

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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@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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Dear Sue, Please accept my great thankfulness of giving me the Survivor Corps. access information. I called this morning and already have an appointment set up for June with a Pulmonologist that deals with Covid. Because I was not in ICU when I had Covid, I do not qualify for their program, but the Pulmonologist is the same. June is the earliest they could get me in, but am on a cancellation list. Time goes fast. Without your help, there would be NO appointment! As I write this, evening is setting in and I am in the hospital. The IV antibiotic hooked up is Levofloxacin, and feel very blessed to be here.

There is a view out my window of a beautiful farm pond, which reminds me of younger days with my dad. He is long passed, but we were the best fishing buddies! He was a career Marine, so we moved alot. One place we fished was off the old Oakland Bay bridge in California in the 1970s. He was a survivor of the Chosin" Reservoir in Korea, so I do feel very fortunate to even be alive! If he had not survived, I wouldn't be here. Well, the medication is making me get soppy, sorry! Thank-you again for the most beneficial information. You are no different than a lifeguard, nurse or doctor when it comes to saving lives. You save lives through your printed words. If only everyone were like you, the world would be so wonderful.

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@otter2154

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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Dear otter2154, so sorry to read of your suffering. Did you read Sue's information link she sent me? Here is the link she sent me, but it is for Indiana: https://www.survivorcorps.com/pccc-in.

Hopefully, the Survivors Corps has help for you in your state. Yes, Covid can pack a wallop even when it is "gone." Yeah, right. I had no idea that Covis can cause Emphysema! Wow. Well, I know now!

Right now I am hooked up to IV antibiotics in the hospital, so feel very fortunate. Am hoping this will wallup whatever it is…the E-coli, and the pneumonia. I took Doxycycline for months, and it kept the infection from killing me, but didn't wipe it out. A few days after i would quit taking it, the mucus would thicken to the point that nothing would get it to move. Then it would feel like trying to breathe through an ink-pen tube. Basically have been on several different antibiotics for one year.

Please find out about the tip Sue the Mentor gave. I pray you get better. Thank-you for caring about other people. That is why we were created!

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@garry

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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Dear garry, sorry to hear of your situation. I totally hear you. The only hing that loosens the mucus is nebulizing with 7% saline, AND that is if I am on antibiotics. NOTHING breaks the mucus up without antibiotics…not Mucinex, not a flutter valve, not Albuterol, or any of the other nebulizers. Right ow, I am in the hospital hooked up to IV antibiotics. The nurse brought in a nebulizer with Albuterol in it, and my throat feels like it is closing up somewhat. Albuterol always worsens my condition, but they do not believe me. When the nurse comes in I will ask why I can't have the saline! It will be hard to sleep. Hope the antibiotics kick in soon! I am confused, did you find out what is wrong? Thanks for the kindness and writing.

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@thomason

Dear garry, sorry to hear of your situation. I totally hear you. The only hing that loosens the mucus is nebulizing with 7% saline, AND that is if I am on antibiotics. NOTHING breaks the mucus up without antibiotics…not Mucinex, not a flutter valve, not Albuterol, or any of the other nebulizers. Right ow, I am in the hospital hooked up to IV antibiotics. The nurse brought in a nebulizer with Albuterol in it, and my throat feels like it is closing up somewhat. Albuterol always worsens my condition, but they do not believe me. When the nurse comes in I will ask why I can't have the saline! It will be hard to sleep. Hope the antibiotics kick in soon! I am confused, did you find out what is wrong? Thanks for the kindness and writing.

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@thomason Congratulations! You're getting help, you're in the hospital that will help you. Sounds good to me that you're on IV antibiotics and getting respiratory treatments. I've been very concerned about you so thrilled Sue was able to get in touch with you and get the right information to help you….now! Sue is a real jewell, isn't she. I think she has so much wonderful, helpful information available that many or us are helped by her, plus, she's a very caring person.
You get every bit of rest possible and take care to take advantage of every chance you have to get better. I'm praying for you to get good docs, good help and good health~blessings, elizabeth

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@ess77

@thomason Congratulations! You're getting help, you're in the hospital that will help you. Sounds good to me that you're on IV antibiotics and getting respiratory treatments. I've been very concerned about you so thrilled Sue was able to get in touch with you and get the right information to help you….now! Sue is a real jewell, isn't she. I think she has so much wonderful, helpful information available that many or us are helped by her, plus, she's a very caring person.
You get every bit of rest possible and take care to take advantage of every chance you have to get better. I'm praying for you to get good docs, good help and good health~blessings, elizabeth

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Dear Elizabeth,
Thank-you, so much. I love your name…could it be because our oldest daughter is named Elizabeth?!!! Thanks again & God Bless. : )

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@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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