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Bronchiectasis and MAC specialist - Do you travel to one? Insurance?
I was recently diagnosed with bronchiectasis. It's likely I have MAC as well though my first culture did not show any MAC (The pulmonologist thinks it was "masked" by the "dominate" haemophilus influenzae that I had at the time the culture was taken.)
I am grateful to have found this support group. You have given me a world of useful information, and it's great that this sight is searchable with key words or topics on here. My question is how do you know if you should find a more BE/MAC experienced pulmonologist? How do you weigh this with travel and expense? I hadn't even heard of National Jewish Health until joining this group. Do those of you who are under their care travel from out of state? Does your insurance pay for any of the care/visits? Do you also see a local pulmonologist? There appears to be a bronchiectasis and NTM center about 80 miles away from my home but I just don't know if I can be traveling that far on a regular basis. I realize this condition is chronic and that I will need to see a specialist for years to come. I am 58 years old and like all of us hope to be as healthy as I can for many, many years. I have been quite healthy up to this point in my life and I am not only overwhelmed with this diagnosis but also with navigating the doctors/specialists/health care system.
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Yes, I would recommend Dr. Garcia. I have not seen or heard of Dr. Solomon. He may be new since my last visit. UAB is still "young" with their NTM Clinic plus getting added to the list of nationwide care centers. Still, I would trust my care with them and their knowledge rather than the lack of care and knowledge within close proximity where I live.
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1 ReactionHi Anita, I don't have the list but was listening to a NJH BE NTM conference and there are now almost 60 centers in the US and according to Dr. Daly (THE BE NTM specialist in US and probably the world), there should be around 100 approved BE NTM centers in US in 2026. He also added that many of NJH current patients are being referred by these centers. So, if you want the best...
I went to NJH and I am beyond glad I did. Call your insurance and see if they will pay for it. You could also call NJH and talk to them about insurance, etc. It can take months to get in, but it is worth it. Good luck. Kathy
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2 ReactionsThanks, Kathy. I'll look into the possibility of NJH - and if my insurance covers care there. It's certainly worth considering.
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2 ReactionsI just switched from one bronchiectasis specialist two hours away to another at Cleveland Clinic, which is 2.5 hours away. The bronchiectasis specialist did the first visit as a virtual visit, then prescribed a lot of tests. I am in the process of getting all of the testing done locally. It's a bit of a hassle but it's doable. Once he receives all the results, I'll drive the 2.5 hours to see him.
The other specialist I had was super disorganized and I ended up wasting time driving all the way up to Tampa for no reason a few times.
I agree with everyone else - I saw several general pulmonologists before deciding that it's imperative to see a specialist. I do have a local pulmonologist so that I can get the lung function tests done without driving all the way to Weston.
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8 ReactionsJust made an appointment with Dr. Garcia. It's not until December, but I'm happy that I was able to get in. Thanks @prayersandmotivation, I asked about telemedicine - it's available after the initial visit. The scheduler wasn't sure about continuing to have tests where I live, after I'm seen at the UAB clinic, but all previous tests can be transferred. I'll be calling the insurance company soon so I can make sure I "dot my i and cross my Ts" when it comes to insurance. Thanks for all of the tips everyone.
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5 ReactionsOnce you have confirmed with your insurance and it is a go.....you might find it to be of help to get in early to see Dr. Garcia by calling in the mornings to see if there has been a cancellation, You would be surprised how often it can work in your favor for an earlier appointment.
Barbara
That's a great idea, Barbara - thanks!
Who are you seeing at Weston? Thanks.
Yea! Glad you made the appointment! Other labs needed can be done elsewhere with orders sent from Dr. Garcia but you do have to follow up and make certain the lab you use actually follows through and sends them and has the correct address/fax number!
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1 ReactionJustin Dolan. His boss was recommended (sorry I forgot his name), but he didn't do the virtual visits and it would have taken so long to get an appointment. It took two months just to get the virtual appointment with Dr Dolan.