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Don't Know What to Do Next: COVID & Lung Conditions
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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Thank-you, and I pray for your wellness. Although the e-coli is gone, the horrible mucus with cement consistency remains. There are so many people suffering in this world, it is very sad. The odd thing is, more and more people seem to have this mucus problem, and most have never been ill. Something seems amiss...
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1 Reaction…our world has definitely changed…
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1 ReactionYour suggestion about NJH is very interesting but, perhaps, not practical for some. My wife is experiencing shortness of breath for two years now and every single test performed to her lugs and heart showed that these organs are working just fine. So, unless her doctors missed something, it appears that the cause of her problem rests somewhere else. I am considering asking for a second opinion to a doctor at Mayo in Jacksonville (we live two hours away) but don't know if we should see a cardiologist or a pulmonologist first. We also wonder if there is also a multidisciplinary approach at Mayo available for difficult cases when the cause of the issue cannot be determined. Perhaps you have some information in this regard. I feel lost and, frankly, don't know how the best proceed next. Anything you would have to say will be highly appreciated.
Pedrito, although I am a native Floridian, I haven’t lived there in over 15 years so cannot help you on logistics…but you are 100% correct and on the right track to find a multidisciplinary clinic/hospital setting that will explore other than cardiac and lung. Teaching Hospitals that are tied to good medical Universities are a good start. Mayo Clinic fits that description, Cleveland Clinic is big in Florida, University of Miami has an amazing and renown assortment of specialties.
I empathize with your frustration….although my illness is MAC…my doctors became puzzled because my lungs & cardiac workups are all good, clean, amazing. In spite of my healthy lungs housing 2 species of Mycobacterium Avium Complex…I have the pulmonary functions of a teenager. My cardiac system also passed just fine considering normal age (64+). So the doctors checked further…and explored my GI tract. Unpleasant 3 days of diagnostic work…barium swallow , esophageal fluoro, manometry, impedance testing and EGD…they found “silent reflux” which was causing a constant throat clearing and irritating cough (non productive) plus voice change, plus tissue changes in my esophagus around my sphincter muscle. RXs will adress these. Plus doctor dilated my esophagus which return my voice to what it use to be.
Have hope…you must be a loving and intelligent husband to stay so closely involved in the medical dynamic of your wife. Keep searching and asking…be assertive and clear in your goals. This forum is also rich in experience so keep asking the group for help.
Stay well.
Regina
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1 ReactionThank you so much, Regina. My wife and I will celebrate our 50th wedding anniversary next year and I am doing all in my power to return her to where she was a couple of years ago. The frustrating part is when - after all kind of tests - nothing is found and the doctors literally tell you that there is nothing else they can do. And, of course, there is something because her condition persists. I am exploring the possibility of making an appointment with an Internal Medicine doctor who, after an initial thorough evaluation, will referred her to an specialist and go from there. The idea behind is to try to find a doctor who works with a multidisciplinary group so through their knowledge, hopefully, the cause of the issue can be found. Again, many thanks for your nice and comforting words. I also hope you do well. Take care.
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2 ReactionsIf she hasn’t seen a pulmonologist, that should be your next step.
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2 ReactionsWe’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.
Hi Otter2154. Thank you for taking the time to read my message and responding. It is always encouraging to read what others have to say. She already saw a Pulmonologist, a Cardiologist and a Gastro doctor. She was subject to all kind of tests at SHANDS in Gainesville, FL but all the results were negative. However, since she continues to experience shortness of breathe, it is obvious then than an underlying issue still persists and must be determined. The sad and frustrating part is all these doctors who saw her, literally gave-up and did not give us other options or venues to explore in hopes to find the solution. I am not giving up, of course but it is extremely difficult to find the right path, particularly when there is no professional guidance. Basically, we are on our own but still fighting. Many thanks, again.
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1 Reaction@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
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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