Bronchiectasis and MAC specialist - Do you travel to one? Insurance?

From my experience, many "regular" pulmonologists do not have the depth of understanding or knowledge to provide appropriate standard of care for someone with Bronchiectasis and MAC. I travel 4 hours away to a specialist after my experience with 2 local pulmonologists. One totally misdiagnosed, the other one was very dismissive and could have cared less about the MAC or how it should be treated.
I don't know if you are having symptoms or what CT scan results show but it you will be living with this for the rest of your life. Arm yourself with knowledge and travel the 80 miles so that you can get the appropriate care to live the rest of your life as fully as possible.

Welcome to the group. I'm sorry I think it's beneficial to see one at some point and that varies with how sick you are and if your local doc seems to be up to date on bronchiectasis-many are not. Things to think about...
How many lobes are impacted by the bronchiectasis?
What makes the doc think you have MAC? Did you have 3 cultures done for MAC? Note: I was thought to have MAC based on CT's, but cultures from bronchoscopy at Mayo were negative.

Has doc mentioned need for airway clearance? That's important for care.
I did go to Mayo for a diagnosis and plan-lucked into an appt cancellation. The local pulmonologist had gone on emergency leave while I was being worked up and had no one covering. That ended up being a blessing because he never mentioned the bronchiectasis or its management. When I returned, I was able to get into a Penn pulmonologist after a few months and have been followed there 3 years. I am much better than before diagnosis.
I have regular Medicare and they covered care at Mayo, though not any travel expenses.

Hope you can/will travel the 80 miles with having found out about Bronchiectasis and apparently a Bronchiectasis Center of Excellence. It would be good to see if there is a difference with how and what the pulmonologist at the Center of Excellence goes about all of it for you...like tests and suggestions.
We who have BE, Bronchiectasis are doing things like nebulizing hypertonic saline solution, Airway Clearance Techniques and the huff coughing technique.
Once you see the specialist at the Center of Excellence you may not need to see him/her as often as you think you would.
Medicare does pay for the NJH or a Mayo visit...they did in my case having gone up to NJH. However, it might be difficult to get other typical insurance to pay for an out of network/state medical facility. That is one more reason why you might be able to go the 80 miles to the Center of Excellence. If you don't try to see if insurance will pay and then go you might always question yourself with "should I have tried to go to the Center of Excellence" now that you know one is close. 80 miles is close compared to how far many of us travel to see a BE specialist...I'm 82 + and travel 4 to 5 hours to a specialist knowing my local pulmonologist isn't up to snuff on it, knowing enough about it all.
Barbara

Thank you for your responses and sharing your experiences.
A bit more about my diagnosis so far. I was told I have Bronchiectasis in 35% of my bronchi/lungs. There is a section in my right middle lobe and another section in my left lower lobe. I was given Ipratropium and Albuterol to nebulize. I was not told of the importance of airway clearance by the pulmonologist. The prescription box said to use for "wheezing and coughing as needed" After trying it a few times back in July I decided to skip it since I was not wheezing and experienced very little coughing since the haemophilus influenzae had cleared up. I have since learned how important airway clearance is am nebulizing twice a day now. Next week, thanks to info from this support group and several webinars from NJH and other sites, I will start nebulizing 7% saline in addition to the Iprat/Albut. I contacted my current pulmonologist and requested a prescription for the hypertonic saline (I know it's available online, but a prescription is cheaper and I wanted it to be a part of my care plan through a doctor).
I have decided to find another pulmonologist. It's now a matter of who. The center that is 80 miles away from where I live, after further investigation, isn't a "center" and has just one doctor with experience in BE and MAC. But one is better than the pulmonologist group that is here. The doctor is George Solomon with the University of Alabama Birmingham hospital. If anyone has/is a patient of his, please let me know if you'd recommend him. It's great to know that Medicare will cover care at Jewish National Health and other BE/MAC specialists. I am many years away from being qualified for Medicare. Your info though has encouraged me to call Blue Cross/Blue Shield of Alabama to see if they would cover any care out of state and how much care.

Just an addition to the comments above - it looks like there are two pulmonologists with BE/MAC experience at UAB hospital. Dr. Bryan Garcia and Dr. George Solomon are both listed. This was good news to find.

Kudos on your decision to try to see a specialist! As a matter of fact, I see Dr Garcia at UAB 🙂
Keep learning all you can and persevere.

Definitely 🙂! - that's great to hear you are a patient of Dr. Garcia! I'm guessing you would recommend him? Have you seen Dr. Solomon any also?

We drive 6 hours to Mayo Clinic, but are very glad we made that decision. We had a local infectious disease doctor that was of little help to us.

We have Medicare with a supplement and so far it has covered all medical procedures.

@ Anita, UAB is on the list of care centers. https://www.copdfoundation.org/About-Us/Press-Room/Press-Releases/Article/2166/Thirty-three-centers-join-new-Bronchiectasis-and-NTM-Care-Center-Network.aspx

Good to know - Thanks! @detsdum