Connect
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.
Like
Helpful
HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
Connect
https://www.bronchiectasisandntminitiative.org/Find-Care/Care-Center-Network/General-Information
https://www.copdfoundation.org/About-Us/Press-Room/Press-Releases/Article/2166/Thirty-three-centers-join-new-Bronchiectasis-and-NTM-Care-Center-Network.aspx
-
Like -
Helpful -
Hug
2 ReactionsHello Paxmundi-
From what I gathered from the Dallas pulmonologist there is a requirement to have a team of doctors, specialists like ID doctor, gastroenterologist doctor etc, ....dedicated to working with the specialist pulmonologist treating BE patients....team approach. Might have to have that confirmed but sounds logical because that is what NJH and Mayo have from my understanding. All corrections of my understandings are welcomed.
Barbara
-
Like -
Helpful -
Hug
1 ReactionWhich Dallas pulmonologist?
I just started seeing Dr. Jung at Baylor Dallas. Who are you seeing...I take it from your question you are close to or in Dallas?
Barbara
This is for my mom. She used to see Dr Philley in Tyler before transferring to a local pulmonologist once successfully managed. She fell and broke her femur 3 weeks ago and developed pneumonia in the hospital. She has only been seeing the pulmonologist with the hospital, Southwest Pulmonology. Their incompetence, rather not specializing in MAC/Bronc, has her in a severe exascerbation.
Are you happy with Dr Jung?
-
Like -
Helpful -
Hug
1 ReactionI have only seen him once. In the big picture of those pulmonologists I see, I believe he appears to be into what he is doing. He appears to be very interested in his field and serious about it all.
He is striving to get Baylor as one of the Centers of Excellence.
Tyler is great in terms of their lab, (I was seeing Dr. McShane before she went onto NIH) NJH is great for their lab and extensive knowledge. I will go to Tyler at least once a year due to their lab ability. We have to weigh so many factors when considering where and who to see.
I pray that what your Mom just went through and is going through I can avoid before my calling to leave this earth. I have a -4 bone density but no broken bones as yet with a good few falls in the last decade. I'm going on 83 but overall am strong just yet.
Barbara
-
Like -
Helpful -
Hug
2 ReactionsHi
I am a patient at NJ, but can’t always make it up there.
I saw Dr. Jung once and see him again Friday. I liked him.
It will be interesting to see if their proposal in this round of Centers of Excellence is approved.
UTSW is my preferred choice for medical care. They have a bronchiectasis program within the cystic fibrosis area. I wonder if one of those docs saw your mom.
I was not pleased with mine so for local support I switched to Dr. Jung
Dr Philley is still at UT East TX -Tyler. She is in administration now. I was seeing Dr. McShane from Jan 2023 until she departed this year for the NIH. I am now cared for by Dr Megan Devine in the same Pulmonology Clinic in the Riter Building on the UT Tyler North Campus. The physicians and nursing staff there and the lab are all excellent. Monica the current Respiratory Therapist also impresses me. I am a 76 yr old retired RN.
I am sorry your mother’s femur broke and she picked up a nosocomial pulmonary infection- pneumonia.
Nancy
Were you unhappy with the pulms at UT Southwestern?
No, she has been at Presby Plano for the past 4 weeks, and those pulms know nothing about these conditions.
Sorry to hear that your Mom has been in the hospital for the last 4 weeks.
Keep in mind Dr. Jung at Baylor.
You might call Dr. Jung's office and see if they have any suggestions even with your Mom at Preby Plano.
Barbara