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Don't Know What to Do Next: COVID & Lung Conditions

Lung Health | Last Active: Jun 9, 2021 | Replies (96)

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@cmi

In 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.

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Replies to "In my opinion, you should make EVERY possible effort to get to NJH (National Jewish Hospital)..."

Dear @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

Your 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.