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Tree-in Bud, MAC, but no Bronchiectasis
MAC & Bronchiectasis | Last Active: Apr 14 8:51pm | Replies (8)Comment receiving replies
I have had three CT’s since last summer and radiology failed to note a 1 cm cavity on not one, not two, but all three CT’s. It came to light because the cavity was in my pulmonologist after visit notes. I asked about it after the first CT, because it wasn’t in the radiologist report, and the pulmonologist said they deferred to radiology. But then the second CT, same disconnect. I then pushed the issue with my infectious disease doctor and she said to assume the pulmonologist is always right (even though my infectious disease doctor is treating from the radiology reports). Wha?! So I raised it again with pulmonologist, asked her to speak with radiology and come to a “meeting of the minds” (honestly assuming radiology would explain why pulmonologist was incorrect, but nope). After that meeting, radiology amended third CT report to include cavity. Honestly even with multiple doctors reviewing the CT, in my case, it is still a total $&1!-show.
Replies to "I have had three CT’s since last summer and radiology failed to note a 1 cm..."
Wow, in that the Infectious Disease doctor said "is treating from the radiology reports"
I was confused about how they decide to treat us and asked a local pulmonologist. He said CT Scan along with what is or is not showing as a MAC infection...plus how we are feeling and symptoms. I was also told by another pulmonologist's office nurse (who has appeared to be excellent in all ways) that you don't see the Infectious Disease doctor associated with the 'system' unless you have MAC infection.
Again from what we are hearing on Mayo etc. IT APPEARS, each doctor decides and has their own philosophy on what to base the type of care a patient should receive and how to go about that care (medications etc. etc.) verses a/the standard for BE and MAC infections. It also APPEARS from the answers I have received, each medical system has different guidelines.
So sorry for all you have detailed above with regard to your experience and answers from them. It is so upsetting and unsettling. I would imagine that part of all you have experienced is that they do look out for each other and don't want to step on toes. That is not always good for the patient. It APPEARS it can also get confusing if they aren't all working together, talking to each other, making a mutual decision, rather than operating individually.
Just when you think you are doing everything right to help yourself there are aspects that are somewhat out of our control and things happen, such as wrong, or lack of, communication poor attention to detail.
We have to be so alert, proactive and so smart. We have to know all that we have to look out for and ask. So very taxing.
I take it the pulmonologist is not calling the shots for how to treat?
Thanks for sharing that experience, it all helps us.
Barbara
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Oh my! I am sorry to hear that. That's why we need to be as informed as we can and our own advocate. I am glad you were persistent! What is your treatment now, may I ask?