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How important/helpful is a respiratory therapist for someone with MAC?

Posted by annagh @annagh, Mar 24, 2023

I just got an appointment with Dr. Kevin Winthrop, ID, at OHSU. My pulmonologist diagnosed MAC in November and wanted me to go on Big 3 immediately, but after seeing videos of Dr. Winthrop (who is apparently my pulmo's go to guy for MAC) as well as Dr. Huitt from NJH, say that if the CT scan is stable and not a "heavy burden of disease", wait and watch is okay, I opted to go that route. Pulmo thinks I'm delaying the inevitable and asked if want to see Winthrop, which I'm very happy to do, though it is a 5.5 hour drive each way. Since there are no respiratory therapists anywhere near me, I've called OHSU to see if I can schedule an appt while I'm there. Not sure if they'll allow that or if I have to see Dr. first and have him make the request. So far all my airway clearance info is coming from this group and videos, and an in-person consultation would be reassuring at the very least. Any thoughts? Any one with experience with Dr. Winthrop or OHSU (Oregon Health and Science University)? I've seen him in several videos.

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annagh | @annagh | Jul 22 8:23pm
In reply to @ritapearl "I have consulted with him.He is the “cutting edge” on MAC.Besides that he is the warmest,friendliest,..." + (show)
@ritapearl

I have consulted with him.He is the “cutting edge” on MAC.Besides that he is the warmest,friendliest, and yes go see him

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Yes, he is! I've been seeing Dr. Winthrop for over a year now, including going through the clofazamine trial, July through January, and continuing to follow-up. So far two negative sputum samples. In October I'll have a CT which will reveal any continuning damage or improvement in my lungs. Still no respiratory therapist, but thanks to Dr. W and all the sharing in this group, I feel like my airway clearance routine is pretty effective. I'm also feeling better about my pulmonologist who is in touch with Winthrop. I feel like he's more communicative with me, and I understand where he's coming from. His original instructions to go on the big three were standard protocol, and the best he knew (way more than most it seems), but as he said on my last visit, Dr. Winthrop has more options. I like my team!

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Mentor
Sue, Volunteer Mentor | @sueinmn | Jul 23 12:53pm
In reply to @annagh "My pulmonologist thinks it would an excellent idea to refer me to a respiratory therapist, but..." + (show)
@annagh

My pulmonologist thinks it would an excellent idea to refer me to a respiratory therapist, but there are none in the area. When I search "respiratory therapist" all I get are job openings! If someone were looking for a career opportunity in the health care field, I think is the need is great and will only increase.

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Check for "Pulmonary rehab" - these programs may be in the PT or OT department of a hospital.

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lvnl | @lvnl | Jul 24 8:33am

Also look for "chest therapy" which is more focused on airway clearance. This is what I was referred for w/bronchiectasis & then MAC. It's most commonly associated w cystic fibrosis but same goal & process to clear airways.

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