Bronchiectasis treatment - best places to go?

Posted by gtokaren @gtokaren, Jan 6, 2024

This past summer, I was diagnosed with Bronchiectasis, asthma and tested for TB. Those tests came back with H-Influenza and Bacteria Gordonae. My pulmonologist did not want to treat these infections. I had to beg to get an antibiotic to treat the H-Influenza which helped. He kept saying “I’m not concerned” - even though coughing constantly and daily low grade fevers and fatigue. I said “I am concerned” - this is not normal. Additionally, an 11mm area of GGO was found on my CT, which he said “did you have measles as a child”? Yes, I said - that’s what that is from. Why didn’t that show up on scans in the past then? I’m 71! Anyway, he’s the only game in this small town; and I’m not feeling very comfortable in his care.
My PCP has referred me to the Mayo Clinic in Phoenix, and I finally got a call last evening. After taking all of my info, she then looked to schedule, and said Phoenix does not treat Bronchiectasis, but we could treat your secondary condition - the lung nodule. Didn’t know I had one unless that’s the GGO? In any case, she was going to fax my PCP for a referral to Rochester, MN Mayo campus. My question to you folks is where is the best place to go? National Jewish Health in Denver? Mayo in Rochester or Jacksonville? Or where else? I would appreciate any recommendations as any of these will require significant travel. I live in the four corners area in Colorado. Thanks for any help.

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bubbie2 | @bubbie2 | Sep 21 2:05pm

Denver National Jewish is the gold standard. It would be the best choice imo but there is now a list you can google of bronchiectasis centers around the country which could be helpful. Good luck.

Sue, Volunteer Mentor | @sueinmn | Sep 21 6:10pm

@gtokaren Bubbie2 is correct, that the premier place to go is National Jewish Health (NJH)
If it is not an option, based on insurance or location, here is a list of the other registered centers of excellence:
https://social.bronchandntm.org/directory/find-a-bronchiectasis-and-ntm-center

lilianna | @lilianna | Sep 22 7:45am

I am treated at NJH Denver but often think about changing to northwestern medicine excellence center in Chicago. It’s so much closer and convenient. But I wonder how well the centers serve the BE patients, can you get the same help as at NJH or the centers still „develop”. If you have experience of switching the care from NJH to any center of excellence could you contact me and share your experience. It’s just harder and harder to travel for my husband and myself.

Sue, Volunteer Mentor | @sueinmn | Sep 22 9:08am

In reply to @lilianna "I am treated at NJH Denver but often think about changing to northwestern medicine excellence center..." + (show)

@lilianna Liliana, let's ask @blm1007blm1007 (Barbara) to explain how she manages - she went to NJH, and still consults with them, but has transitioned to care closer to her home in Oklahoma.

lilianna | @lilianna | Sep 22 9:53am

Thank you sue

blm1007blm1007 | @blm1007blm1007 | Sep 22 10:30am

In reply to @lilianna "Thank you sue" + (show)

@lilianna @sueinmn Hi
One visit in 2023 to NJH. Have not been back since.
Found my way to OU Medical Center here, recently, after understanding they are working on becoming a Center of Excellence and that they have the ability to send sputum to NJH for full testing.
The extent, now, for me with NJH, National Jewish Hospital/Clinic, is that my sputum is received from me at the OU Lab and they send it onto NJH.
What I have been doing also is seeing the pulmonologisit in Tyler once a year for a second opinion and that also allows me to use the Tyler lab. I send sputum directly to the Tyler lab via FedEx. My OU pulmonologist likes the fact that I decided to have a check and balance with sputum testing etc. I recently learned, it appears, Tyler reports results a little bit differently. So much to learn with all this and verify.
Hope this clarified it clearly.?
Barbara

lilianna | @lilianna | Sep 22 11:16am

Barbara you have an understaning and cooperative team it seems. I am glad for you. All you doctors somehow u derstand that you need more than one of them. So lucky.

teedlum | @teedlum | Sep 22 11:33am

In reply to @blm1007blm1007 "@lilianna @sueinmn Hi One visit in 2023 to NJH. Have not been back since. Found my..." + (show)

@blm1007blm1007
Hi,
I am looking for a new pulmonologist at OU would you mind sharing the name of the pulmonologist you use at OU. I am currently with a radiology oncologist.
Sincerely,
Linda

bayarea58 | @bayarea58 | Sep 22 1:18pm

In reply to @lilianna "I am treated at NJH Denver but often think about changing to northwestern medicine excellence center..." + (show)

@lilianna I switched from NJH to UCSF, which is a Bay Area Center of Excellence. My doctor at UCSF is excellent. My patient experience has been much improved all around. Happy to discuss in more detail. Please private message me if interested.

lilianna | @lilianna | Sep 22 6:38pm

Thank you to all who responded to my question about the excellence of the centers. I am specifically interested in centers close to me , Illinois or Wisconsin, Iowa where we could drive. So if anybody has any thoughts about how their centers operate I would be grateful for info and your time.