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.

@thomason Welcome to Mayo Clinic Connect, a place to give and get support.

You are right to be concerned. It sounds like you are not receiving adequate treatment and that this lack of treatment could lead to an early death. You are much too young for that.

You will notice that I added your question to the MAC and COVID-19 group. I did this so you would have the best chance of finding information and member support.

COVID-19 is a new virus that we still have a lot to learn about. It sounds like from your research that the providers are not treating you properly. Have you the means and/or have you considered going to a research or teaching hospital?

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@thomason– Welcome to Mayo Clinic Connect. You have been through some pretty tough times with your doctors. I'm glad that you liked this last Pulmonologist. What has he suggested about clearing your lungs of excess mucus? COVID-19 can cause lasting lung damage including emphysema. In people with emphysema, the air sacs in the lungs (alveoli) are damaged. Over time, the inner walls of the air sacs weaken and rupture — creating larger air spaces instead of many small ones.

E-coli pneumonia is usually picked up in a social setting, maybe a hospital, er, etc. It has nothing to do with your own cleanliness. I can't imagine that a doctor wouldn't treat this or not make any suggestions as to where to go for help. What has your new doctor suggested?

I am a lung cancer survivor and so far I have not had any serious lung infections. I do, however, use a nebulizer when I need it and I have inhalers. I do know that misusing nebulizers can cause great harm to your lungs. You are using it way too often and it might be irritating your lungs even more. You shouldn't use the nebulizer more than 4 times in one day, not in such a short time as you are.

I know that you are waiting to hear back about further infection possibilities but if you do not have a regime to be treated very actively for the E.Coli, any further COVID-19 long haul damages, and your mucus build-up then you need to go somewhere else for treatments.

If you have not discussed any of this with your doctor then I suggest calling him right away. What kind of hospital is your new doctor associated with? Is it a teaching hospital?

REPLY

Without you here to help people, it would be pretty dismal. Thank-you for all the advice. Congratulations on beating Lung Cancer.

When I sat down to write my dilemma, it felt like a person on a raft throwing a message out in a bottle! Really, this forum is my last hope. My husband and just read your words…he is crying and I am terrified. You are the only person–doctor, or otherwise–to inform me that nebulizing more than about four times can be harmful. The mucus keeps building up and I can't breathe, so my options are limited. The doctors I have been to have all prescribed the different inhalers. From Symbicort to Albuterol, plus a new one Yupelri, and Ipratropium Bromide, I have tried many of them and they do nothing for me. In fact, the Albuterol and Symbicort make it worse. It feels like my windpipe gets smaller and is numbed. he Yupelri does nothing at all, good or bad help-wise, but does give me a terrible headache that lasts for a few days. No point in using them. The Symbicort, Ipratropium Bromide and Albuterol, were also given in nebulizing form. Unfortunately, that did not improve their usefulness.

Every single day I learn more new things. The second thing you said which I did not know is that Covi can cause Emphysema. Wow. Now it is all starting to make sense. It surely isn't something that a person wants to hear though. All this time, and one year of antibiotics, I have thought the E-coli was the causative factor in this ongoing battle for my life. Now, it just may be that Covid has actually taken another life, albeit more slowly.

The hospital is not a teaching hospital. I live in Indiana, and the second Pulmonologist I went to was an Indiana University doctor. He gave me the nubulizing form of Symbicort to Albuterol, and Ipratropium Bromide. When I told him they did not work, he just commented that it was "very interesting." He would not prescribe any antibiotic, even when I explained that the mucus would thicken to a life-threatening consistency.

Tomorrow, when the newest Pulmonologist office opens, I am calling right away. He is not back in the office for two weeks, but his nurse is there and she relays messages to him. For sure, tomorrow I will hopefully find some answers to this.

Thank-you, for taking the time to help another human being in time of need. God is watching!

P.S. I did post on here about "Suffocating Mucus…." awhile back under "CeeDee," but was having account-hacking problems. So the "Anonymous" is me.
That is fixed now, so it is "Thomason!" Thanks.

REPLY
@thomason

Without you here to help people, it would be pretty dismal. Thank-you for all the advice. Congratulations on beating Lung Cancer.

When I sat down to write my dilemma, it felt like a person on a raft throwing a message out in a bottle! Really, this forum is my last hope. My husband and just read your words…he is crying and I am terrified. You are the only person–doctor, or otherwise–to inform me that nebulizing more than about four times can be harmful. The mucus keeps building up and I can't breathe, so my options are limited. The doctors I have been to have all prescribed the different inhalers. From Symbicort to Albuterol, plus a new one Yupelri, and Ipratropium Bromide, I have tried many of them and they do nothing for me. In fact, the Albuterol and Symbicort make it worse. It feels like my windpipe gets smaller and is numbed. he Yupelri does nothing at all, good or bad help-wise, but does give me a terrible headache that lasts for a few days. No point in using them. The Symbicort, Ipratropium Bromide and Albuterol, were also given in nebulizing form. Unfortunately, that did not improve their usefulness.

Every single day I learn more new things. The second thing you said which I did not know is that Covi can cause Emphysema. Wow. Now it is all starting to make sense. It surely isn't something that a person wants to hear though. All this time, and one year of antibiotics, I have thought the E-coli was the causative factor in this ongoing battle for my life. Now, it just may be that Covid has actually taken another life, albeit more slowly.

The hospital is not a teaching hospital. I live in Indiana, and the second Pulmonologist I went to was an Indiana University doctor. He gave me the nubulizing form of Symbicort to Albuterol, and Ipratropium Bromide. When I told him they did not work, he just commented that it was "very interesting." He would not prescribe any antibiotic, even when I explained that the mucus would thicken to a life-threatening consistency.

Tomorrow, when the newest Pulmonologist office opens, I am calling right away. He is not back in the office for two weeks, but his nurse is there and she relays messages to him. For sure, tomorrow I will hopefully find some answers to this.

Thank-you, for taking the time to help another human being in time of need. God is watching!

P.S. I did post on here about "Suffocating Mucus…." awhile back under "CeeDee," but was having account-hacking problems. So the "Anonymous" is me.
That is fixed now, so it is "Thomason!" Thanks.

Jump to this post

@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.

REPLY
@thomason

Without you here to help people, it would be pretty dismal. Thank-you for all the advice. Congratulations on beating Lung Cancer.

When I sat down to write my dilemma, it felt like a person on a raft throwing a message out in a bottle! Really, this forum is my last hope. My husband and just read your words…he is crying and I am terrified. You are the only person–doctor, or otherwise–to inform me that nebulizing more than about four times can be harmful. The mucus keeps building up and I can't breathe, so my options are limited. The doctors I have been to have all prescribed the different inhalers. From Symbicort to Albuterol, plus a new one Yupelri, and Ipratropium Bromide, I have tried many of them and they do nothing for me. In fact, the Albuterol and Symbicort make it worse. It feels like my windpipe gets smaller and is numbed. he Yupelri does nothing at all, good or bad help-wise, but does give me a terrible headache that lasts for a few days. No point in using them. The Symbicort, Ipratropium Bromide and Albuterol, were also given in nebulizing form. Unfortunately, that did not improve their usefulness.

Every single day I learn more new things. The second thing you said which I did not know is that Covi can cause Emphysema. Wow. Now it is all starting to make sense. It surely isn't something that a person wants to hear though. All this time, and one year of antibiotics, I have thought the E-coli was the causative factor in this ongoing battle for my life. Now, it just may be that Covid has actually taken another life, albeit more slowly.

The hospital is not a teaching hospital. I live in Indiana, and the second Pulmonologist I went to was an Indiana University doctor. He gave me the nubulizing form of Symbicort to Albuterol, and Ipratropium Bromide. When I told him they did not work, he just commented that it was "very interesting." He would not prescribe any antibiotic, even when I explained that the mucus would thicken to a life-threatening consistency.

Tomorrow, when the newest Pulmonologist office opens, I am calling right away. He is not back in the office for two weeks, but his nurse is there and she relays messages to him. For sure, tomorrow I will hopefully find some answers to this.

Thank-you, for taking the time to help another human being in time of need. God is watching!

P.S. I did post on here about "Suffocating Mucus…." awhile back under "CeeDee," but was having account-hacking problems. So the "Anonymous" is me.
That is fixed now, so it is "Thomason!" Thanks.

Jump to this post

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

REPLY

Hi @thomason , Sorry to hear about your difficulties. If you have not tried airway clearance, e.g the Aerobika or a vest in addition to nebulizing, you might want to discuss with your doctor, as this might help you to remove the mucus more effectively.
Also, if there is any question of aspiration, as raised by the CT report, you might want to try GERD precautions, eg sleeping on a slant, minimizing evening meals etc.
Are you able to travel to see an appropriate specialist?
Hope things start to improve for you

REPLY

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

REPLY

Omg so sorry you are going through this! Just a couple of things that I hope help. First my pulmonogist told me to never use saline(7%) more than twice a day. However an aerobika can be used as often as needed. If you don't have one check it out through Google and order one from eBay which has the lowest price. You don't need a prescription and hopefully it will help loosen the gook in your lungs so you can bring it up. You should ask your doctor when you talk to him.

Second Symbicort does not come in nebulized form so I am confused about what you are taking.. It is combination drug of fomorterol, a bronchodilator that opens the airways and budesonide, a steroid. It comes in an inhaler.
Albuterol is a bronchodilator and comes both as a nebulized drug and also as an inhaler.

Emphysema is not associated with increased production of mucus. It is a disease of the alveoli, where oxygenated blood is exchanged for blood with carbon dioxide. It is not an airway disease. Jmo but it sounds more like something left from covid.

I don't know where you are on Indiana but I think there are teacing hospitals in Indianapolis. Notre Dame,? Perdue? Or if you are anywhere close to Chicago there are several teaching hospitals here. It is worth traveling to get good medical care.

REPLY
@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

Jump to this post

In addition to Mucinex, there is a product called Tussein Mucous and Cough Suppresant which has been excellent for me in keeping the mucous thin. Mucinex increased my blood pressure and was not an option for me. Tussein was given to me in the hospital while being treated for pneumonia. Twice a day keeps all well for me.

REPLY
@rits

Omg so sorry you are going through this! Just a couple of things that I hope help. First my pulmonogist told me to never use saline(7%) more than twice a day. However an aerobika can be used as often as needed. If you don't have one check it out through Google and order one from eBay which has the lowest price. You don't need a prescription and hopefully it will help loosen the gook in your lungs so you can bring it up. You should ask your doctor when you talk to him.

Second Symbicort does not come in nebulized form so I am confused about what you are taking.. It is combination drug of fomorterol, a bronchodilator that opens the airways and budesonide, a steroid. It comes in an inhaler.
Albuterol is a bronchodilator and comes both as a nebulized drug and also as an inhaler.

Emphysema is not associated with increased production of mucus. It is a disease of the alveoli, where oxygenated blood is exchanged for blood with carbon dioxide. It is not an airway disease. Jmo but it sounds more like something left from covid.

I don't know where you are on Indiana but I think there are teacing hospitals in Indianapolis. Notre Dame,? Perdue? Or if you are anywhere close to Chicago there are several teaching hospitals here. It is worth traveling to get good medical care.

Jump to this post

Thank-you, for your advice. The two nebulizer vial-type medications prescribed are Ipratropium Bromide with Albuterol and the other is Budesonide. The reason I called the Budesonide Symbicort is as follows: Symbicort (budesonide and formoterol fumarate dihydrate) is a combination of a steroid and a long-acting bronchodilator used to prevent bronchospasm in people with asthma or chronic obstructive pulmonary disease (COPD). So, the one ingredient is like Symbicort, and it IS in a nebulizer vial! No offense, but the Aerobika and other flutter valves are totally useless for me. I have blown on them until forever, and it never loosens any mucus. Also, have taken 600 mg. Mucinex and waited for the thinning of the mucus…it never happens. These products do not help whatever it is that I have. I just got back from STATCARE, and the on call doctor wants me to go into the hospital. He gave me a steroid injection, and told me if the symptoms return, to rush to the ER. The shot has helped me immensely, but we all know how temporary (unfortunately) steroid relief lasts. I am looking at a hospital stay in the future, and hopefully IV antibiotics (which can be administered at home too). Maybe they will refer me to a teaching hospital out of frustration. By the way, after the Pulmonary Function Test, it was noted that the inhaler did not improve my breathing score.
Thank-you, for your help. It is greatly appreciated.

REPLY
@1065408

In addition to Mucinex, there is a product called Tussein Mucous and Cough Suppresant which has been excellent for me in keeping the mucous thin. Mucinex increased my blood pressure and was not an option for me. Tussein was given to me in the hospital while being treated for pneumonia. Twice a day keeps all well for me.

Jump to this post

Thank-you for your help. I wish those products helped, but for some reason they do not. My problem may be different as I did have radiation to my throat one year ago. I passed a swallow study and an eat and drink fine, so the mucus is an oddity. Whether it is from illness, or radiation…guess that will have to be figured out. All I know is that Mucinex and other similar products do not loosen the mucus at all. Thank you, again for your concern & help!

REPLY
@dulwich

Hi @thomason , Sorry to hear about your difficulties. If you have not tried airway clearance, e.g the Aerobika or a vest in addition to nebulizing, you might want to discuss with your doctor, as this might help you to remove the mucus more effectively.
Also, if there is any question of aspiration, as raised by the CT report, you might want to try GERD precautions, eg sleeping on a slant, minimizing evening meals etc.
Are you able to travel to see an appropriate specialist?
Hope things start to improve for you

Jump to this post

Thank-you for caring. I do sleeping on a hospital bed which helps alot. I will probably be in hospital soon. It is either that, or slowly die! Thanks again. P.S. Aerobika and Mucinex do not work for whatever it is I have.

REPLY
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