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Standards for the centers of excellence
Does anyone know if the standards for the centers of excellence have been published or made generally available to to the patient population? This would be infinitely valuable to all of us who have been struggling with pulmonologists who know so very little about our complex of diseases—BE and the panoply of infections that it so often gives rise to.
I intend to follow up with Dr. Ignatius of John Hopkins, whom I met at the March conference in Berkeley and discussed this a bit. If anyone has any updates that would be great.
If all these clueless pulmonologists, and even ID doctors from what I’ve heard, saw something from fellow professions who have actually garnered the knowledge to call themselves specialists, it may begin to seep in.
Thanks in advance for any insights any of you might have.
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Baylor has some specialists who deal with MAC, don't recall the names off the top of my head. Any chance you can move her?
That is a great suggestion! The plan is to get her into him once she is released.
Hi Barbara. What made you switch from UT Tyler to Baylor? Just curious.
I have not totally switched. I'm on Medicare with a Supplement. As you know Dr. McShane, BE specialist, left Tyler. I was seeing Dr. McShane who had/has many years of experience with BE patients. I want to continue with Tyler mainly for the lab, how they report, due to the good communication I receive from the office and to have another opinion, thoughts, insight etc. Sometimes we get information from one but not the other (be it due to ones philosophy or one didn't think to mention something) that is helpful and enlightening for the patient. Tyler will be a once a year visit for me, as of my plan now.
I am going to see Dr. Jung also due to my belief that he is strongly interested in his Bronchiectasis patients and BE in general. I believe from what I have gathered he is the one doing much of what has to be done to get this Baylor location to become a Center of Excellence. It appeared from the information I read both the Tyler doctor, I have seen once, and Dr. Jung, I have seen once, are about equal in time in the field, pulmonology.
Not all labs can do what Tyler or NJH can do with our sputum submissions for testing in terms of detail.
Barbara
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3 ReactionsBarbara do you know what special detail their labs do?
Dr. Daily at NJH in one of his presentations said Tyler was the only other lab that can do what NJH does.
Otherwise what I do know is that they can tell exactly what type of MAC infection etc. shows up in the sputum submission. I have Mycobacterium avium -intracellulare infection (MAI).
Barbara
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