Connect
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.
Like
Helpful
HugInterested in more discussions like this? Go to the Lung Health Support Group.
Connect
@thomason Oh, dear I don't know how to answer your questions. I've asked the same. My Oncologist said that medicine is a blunt instrument. Not perfect.
I had to have a dose of cortisone in a knee that was acting u late afternoon. I have a low-grade fever, headache and I sweat all night long after just changing the sheets.
-
Like -
Helpful -
Hug
1 ReactionDear barbq, Sounds like you have a great routine going there! Keep up the good work!
Dear merpreb, Oh no. I hope you feel better. You are too nice a person to be ill. We all love you on here, that is obvious. Are you going to the doctor?
-
Like -
Helpful -
Hug
1 ReactionThanks for your encouragement. We move forward, don’t we? Hugs and blessings to you!
-
Like -
Helpful -
Hug
1 ReactionHello @thomason. I feel for your struggles to breathe through so much phlegm. I am going through the same thing here lately after having had yrs of pretty good breathing. I have numerous lung issues going on, one of which is bronchiectatsis, and also COPD. I have found that a tea called 'Breathe Easy' by Traditional Medicine helps me tremendously. It has licorice root and other herbs that support lung health. It helps me with the tightness in my chest and coughing. I saw in your previous post that you did three vials of saline in an hour. That seems excessive. I have never heard of any dr prescribing it any more than twice a day. You may want to ask your dr if that is ok. I am just worried that you may do more damage than good if you put too much of in your lungs as it is designed to be an irritant to make you cough. The fact that you are doing that amount tells me that you are desperate to get that gunk up and out, and are suffering You probably know to drinks lots of fluids. That will help with keeping the phlegm thinner and easier to bring up. Do you have a spouse or someone in your home that can perform 'cupping' pats on your back? The vibration of that helps loosen the phlegm from the bronchiole walls. I hope that you can get to some good help soon. My mom emphysema and I have seen first hand how hard it is to breathe with that condition. Among the many drugs she was on; she was also put on valium to help calm her and her airways. Please keep me informed, if you don't mind, on how you are doing. Sending prayers up for you and sending healing energy your way.
-
Like -
Helpful -
Hug
3 ReactionsI am so sorry! I have been going through a similar situation with doctors just different findings. I wish I had answers for us both. Hang in there
-
Like -
Helpful -
Hug
2 ReactionsIn my opinion, you should make EVERY possible effort to get to NJH (National Jewish Hospital) in Denver Colorado. You need a team of doctors, a multidisciplinary approach to help you. You have a severe lung infection (E.Coli), lung deterioration (bronchiectasis), and still no clue as to how you acquired it. That is key to your future health…even if the doctors eventually get the meds correct and kill off the bacteria, you (in my opinion) need to have an idea of “how this happened” so you can arm yourself not to reinfect.
I have a mild case of bronchiectasis, with 2 species of MAC…mild case. But at NJH these doctors working as a team have focused on my GI tract (specifically my esophagus). They have put me through the ringer with 5 procedural diagnostic scans, bariums, manometry, impedence test, & EGD, all in 5 days, just to find my source. Silent reflux appeared, hence the in depth search for exactly how. The pulmonologist works in hand with both ID doc and GI doc.
The ID Team is very very specialized with the latest and greatest of tools in their toolbox.
Don’t give up on yourself or your care…you are too young…and I imagine…loved by family and friends. You contribute as we all do by staying in relationship with others in spite of our weaknesses but we have some level of grace to share and grow. Get the best care for yourself and trust the highly successful professionals that have a heart.
P.S. the respiratory team taught me that too much saline nebulizing is counter productive if done improperly. Becoming an irritant to affected lungs…if not productive…if no benefits register…you may be using some bad technique. They get very specific…how not to use your cheeks exhaling, when to hold, how not to over stress exhale, the position to be in (left/right/positioning). Right now I use my Aerobika with no saline.
-
Like -
Helpful -
Hug
4 ReactionsDear @cmi, Since my last post I was hospitalized with IV antibiotics. The last sputum test showed no e-coli. As to how it was acquired, I had an endoscopy and a bronchioscopy, either of which could have
introduced the bacteria. The hospital may not have cleaned their equipment properly. It's a catch-22 all the time, isn't it. Thank-you
-
Like -
Helpful -
Hug
1 Reaction@thomason- Ecoli seems to find the most awful places to hide out and cause havoc! Hospitals are often the place where we pick these creatures up.
-
Like -
Helpful -
Hug
1 ReactionWonderful that you are on the mend!! Stay well!
-
Like -
Helpful -
Hug
2 Reactions