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

Posted by annagh @annagh, Mar 24 2:28pm

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.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

I'm fighting the good fight as well. Would like to check out this DR & see if he can be of help!

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We have no respiratory therapists near me (I'm in NZ) so I've not been given respiratory advice, but I know for me, nebulising with 7% saline and airway clearance that I've learnt from support groups and YouTube have helped me. I did have to go on the Big 3, but that was because I'd lost a lot of weight and coughing up blood. Not very helpful for you though, sorry!

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YouTube is definitely helpful as are support groups. Because of these things I now know, whether I eventually go on the Big 3 or not, I'll be doing airway clearance for the rest of my life, and I've learned a lot about doing it more effectively. I so appreciate that!

But I'd certainly love an in-person consult with a respiratory therapist if I can manage to get one.

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@annagh

YouTube is definitely helpful as are support groups. Because of these things I now know, whether I eventually go on the Big 3 or not, I'll be doing airway clearance for the rest of my life, and I've learned a lot about doing it more effectively. I so appreciate that!

But I'd certainly love an in-person consult with a respiratory therapist if I can manage to get one.

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Dear Annagh, you should call doctor’s office and ask them about how to see the respiratory therapist at their department if they have one; and what else they do for NTM patients. R. Therapists work in the hospital, often times, with inpatients and may only have a day or two with outpatients.
I would highly recommend seeing one even if you would have to stay overnight near the hospital to make it worth the long drive. Also, if they have a large NTM department, your doctor may want to evaluate your lung function to determine if you need inhaled meds to help deliver the saline to the small bronchioles.
I had all of that done when I went to NJH and found that Albuterol puffs helped open the smallest bronchioles to clear up thick mucus plugs lodged there.
I wish you the best.

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Hi annagh,
I read your note, I saw Dr. Winthrop in this September, He seems to me very much research focused. Which means he is on top of the NTM stuff. He is the one who suggested I should continue to use Albuterol and Aerobika for my airway clearance. He also recommended that I join the bronchiectasis registry. Now he is tracking my mucus regularly. Did you have a chance to see him yet?
Take care!
Ling

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@wangling

Hi annagh,
I read your note, I saw Dr. Winthrop in this September, He seems to me very much research focused. Which means he is on top of the NTM stuff. He is the one who suggested I should continue to use Albuterol and Aerobika for my airway clearance. He also recommended that I join the bronchiectasis registry. Now he is tracking my mucus regularly. Did you have a chance to see him yet?
Take care!
Ling

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Yes. After I saw a video in which Dr. Winthrop discussed wait and watch, and my pulmo was insisting on the Big 3 immediately, I asked for a referral. I first saw Dr. W in May and got a much more thorough explanation of my situation, and the option of being in one of his clinical trails. I'm now halfway through the chlofazamine trail, and think there is some improvement, whether it is the drug or the diligent nebulizing, Aerobika and walking. He's very friendly, open, and I trust him. He said if this knocks my MAC down a bit, waiting and watching may be an option. I figure being in a trial provides as careful "watching" as I can get! And even if it doesn't benefit me directly, hopefully it will help all of us down the road. Unfortunately, he's about 5 1/2 hours away— but worth it to me!
All best,
Anna

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@annagh

Yes. After I saw a video in which Dr. Winthrop discussed wait and watch, and my pulmo was insisting on the Big 3 immediately, I asked for a referral. I first saw Dr. W in May and got a much more thorough explanation of my situation, and the option of being in one of his clinical trails. I'm now halfway through the chlofazamine trail, and think there is some improvement, whether it is the drug or the diligent nebulizing, Aerobika and walking. He's very friendly, open, and I trust him. He said if this knocks my MAC down a bit, waiting and watching may be an option. I figure being in a trial provides as careful "watching" as I can get! And even if it doesn't benefit me directly, hopefully it will help all of us down the road. Unfortunately, he's about 5 1/2 hours away— but worth it to me!
All best,
Anna

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Glad to hear that you have some improvement, I believe all the things you do and the drug trial contribute to this. Other people in the future would benefit from the trial you are in, which is great. Like the registry I am in to keep track of my sputum, I don't know what I can benefit from it, but I believe it will help the research for future development.
Best luck!
Ling

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There seems to be a big gap in best practice medicine in getting any Ntm patient refered to a respiratory therapist, I have Mycrobacterium lentiflavin. Recent dx of pseudomonas Oryzihabitans. Both not common. Off to JNH very soon. This group is a good for getting your questions answered. With Covid demand has increased for respitory therapists. Good luck, watch the videos.

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@squire123

There seems to be a big gap in best practice medicine in getting any Ntm patient refered to a respiratory therapist, I have Mycrobacterium lentiflavin. Recent dx of pseudomonas Oryzihabitans. Both not common. Off to JNH very soon. This group is a good for getting your questions answered. With Covid demand has increased for respitory therapists. Good luck, watch the videos.

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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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