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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@becsbuddy

@pedrito is SHANDS a medical center or university hospital? I think that’s what you want now. And there is a Mayo Clinic in Gainesville. You might try them! Your wife shouldn’t have to deal with shortness of breath for so long. Becky

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Hi Becky. I just received your message again and the text now is clear and correct. I cannot understand what happened . I did not know there was a Mayo Clinic in Gainesville and, of course, I will check it out. Your previous message was not making much sense but the copy I have now in front of me is very clear and precise. I hate computers no matter how useful they are. Again, many thanks.

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@otter2154

We’ve exchanged a few comments and I’m glad you’re doing better. I’ve made huge strides, but still have the sticky phlegm ... it’s like semi-dried Elmers glue.

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I’ve been dealing with thick mucus for over 2 yrs. it started as a sinus infection, got the balloon sinus surgery that didn’t help. Now I have very high rapid heart beat along with the mucus. Go thru a box of tissues everyday

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@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.

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I agree that Guaifenesin Cough Syrup helps thin mucous quickly. I like it better than Mucinex because it works faster. At Walgreens it is called Wal-Tussin, or Robitussin. Don’t get the cough syrup with other ingredients- just get Guaifenesin. I use it regularly. I have Asthma, Atelectasis in lower Rt Lung and Rt Elevated Hemidiaphragm (Paralyzed Diaphragm).

NJ

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@pedrito

Hello Becky. Thank you for kind your lines. I believe there is a typo when you ask about a "page medical center". In any case, SHANDS is an university hospital (University of Florida - Go Gators!) and there is not a Mayo Clinic in Gainesville, FL. I will soon have a conversation with Mayo in JAX because I understand they could deal with my wife's issue from a multidisciplinary view/examination of her issue(s). I am still trying to find out in SHANDS, which is much closer to home, has the same approach. Thank you again for your concerns.

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@pedrito I sincerely apologize for steering you wrong about Mayo Clinic being in Gainesville! Becky

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@becsbuddy

@pedrito I sincerely apologize for steering you wrong about Mayo Clinic being in Gainesville! Becky

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Not a problem whatsoever, Becky. It would had been a good idea considering how close Gainesville is from my place. Still, I do appreciate the time you took to read my story and try to help with some suggestions. I contacted Mayo in JAX and they will call us on June 14 for an initial evaluation and we will go from there. I just hope there is a door, even small, that opens and we can continue in our quest to determine what causes my wife's shortness of breath. Again, thank you very much.

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@arleneclaire67

I’ve been dealing with thick mucus for over 2 yrs. it started as a sinus infection, got the balloon sinus surgery that didn’t help. Now I have very high rapid heart beat along with the mucus. Go thru a box of tissues everyday

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What is balloon surgery supposed to accomplish?

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