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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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Dear Sue,
This site is so very helpful, and you mentors are the angels running it! This will be so interesting to learn about. Thank-you, for caring.
Dear oldkarl,
You are a warrior of the first class, and well beyond what most people would call wisdom. In other words, you are way ahead of your time. It is an honor to know such an inspirational human-being. Really. Hope the weather was nice for you on your one-mile journey. Thank God, you lived past age 3! You sure showed them!!!
Dear nanette, Thank-you for caring. I too am fascinated with this new technology. What a time to be alive!
@thomason- Good morning. I hope that you were able to rest comfortably last night. Did you get any further answers from your doctor?
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Dear Merry Volunteer, Hello! Thank-you for the inquiry. The doctor ordered a vibrating vest twice per day, for 20 minutes each time. This is while in the hospital, so I assume if it works, he will order one for home use. I thank God for the treatment I am receiving. He also stated that he will test for E-coli again in 2 weeks time. One thing he said that made me feel better, was that my lungs would "heal, in time." Well, I know emphysema doesn't heal, so he must mean all the rest--pneumonia, and the after-Covid delight! Guess the old saying "Time will tell," would be appropriate here. Again, please accept my gratefulness at all the wonderful information you supplied. After sharing the information with other people about the after effects of Covid, it is shocking that not one person knew. You have been a blessing. P.S. I may be released tomorrow.
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1 ReactionIm so sorry to hear what you are going through and wish you the help that you need. Have you considered contacting National Jewish Health in Denver. They specialize in lung illness. I am considering going to see them for my Bronchiectasis and MAC.
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1 ReactionDear hauoli, Thank-you for the tip. I am still waiting for the sputum sample for MAC...it may be a few more weeks or so. Unfortunately, my insurance will not pay out-of-state. However, I am keeping you in my thoughts & prayers that you make the correct decision, and will heal from this horrible illness. Thank-you, once again.
Hello all. I wanted to post this update, as it may help someone else in a similar situation. The past year has been really difficult with hospitalizations, ER visits,Stat-Care visits, Doctors visits, etc. Tons of different antibiotics, at least ten lung x-rays, 3 CT scans, all in an attempt to cure and find out the cause of this suffocating mucus/shortness of breath. After finishing radiation for throat cancer one year ago, and attempting to eat orally for about 4 months, it was finally determined to place a feeding tube to see if aspiration was the cause of the illnesses. Well, the condition did not improve, but at that point the doctors would not give me any more antibiotics, as they claimed it was not an infection. Even though they were all informed--Infectious Disease two different doctors, two different Pulmonologists--that every single time I would come off them, the mucus would become life-threatening.
Fast-forward to one month ago when I had my third "Barium Swallow Study." The doctor watching the screen was amazed, commenting in all his years of experience, he had never seen someone swallow so well after flunking the past two. The first one was almost total aspiration on liquids and solids. Approximately eight weeks later--and many throat exercises--the second study, I aspirated once on a piece of mushed up meat, with the rest being "Deep Penetration." That means the liquids and pudding consistency food was going down to the brink of the separation flap. They informed me that a person can live with that and still eat, with slick foods, thickened fluids, cautiously. The advice was followed, and the lung condition got worse again. At this point, it was getting somewhat clear that aspiration was the cause of the condition, yet having a sputum sample containing E-coli, meant there was indeed infection also present. Which way to turn?
Last week, I was hospitalized for four days, placed on IV Levofloxacin 700 mg. and Prednisone. The third Swallow Study was taken into account when my new Pulmonologist came into my room and bluntly told me these words: It is a quality of life issue here. "If you keep eating you will die. If you choose the feeding tube for all your sustenance, you will live." It now appears that aspiration was the cause of this condition all along, with the infection not helping. It was all like a "Perfect Storm." My Husband and I both contracted COVID last March 2020 while I was still undergoing radiation. The rest all happened like clockwork, one thing after another. At this point, and it is sad to say...I guess you can not trust the results of a Swallow Study. On the other hand, the "Ground Glass Opacity" that showed up on my last lung x-ray, can be caused from Covid and/or aspiration. There just does not seem to be any way to definitively say for sure that the condition is caused by one thing, or a combination of many factors.
The next step is to contact the Swallow- Study Therapist, and ask her if there isn't some kind of 100% definitive test to see if a person is aspirating. There is no way I am going to risk eating or drinking for another test, just to be gasping for life's vital breath. So for now, it is goodbye food, goodbye nice, hot coffee, goodbye cool water on a hot summer day (especially after mowing the lawn!) and learning a new way of life. Then, it will be certain that it is NOT from aspiration. Yesterday, I ate baby food. One hour later, my breath was extremely short, and panic set in. It was a small experiment, which has shown me much. I dare not risk that again, as my 700 mg. Levofloxacin tablets have only a few days left. The steroids run out in about six days. Of course, praying to our creator for an answer gave me that small, still inaudible voice that spoke to my heart. I felt God was telling me that I should not eat. Thank-you, for listening, and if you are interested, I will update after all the medicine runs out.
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3 Reactions@thomason- I can't imagine what you are going through and how scary your tests were. Have you stopped eating entirely? Is your feeding tube out?
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