Bronchiectasis treatment - best places to go?

Posted by gtokaren @gtokaren, Jan 6 12:54pm

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.

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

Any recommendations for Southern California for these conditions?

Thanks

REPLY

My doctor referred me to the Cleveland Clinic. They have a MAC/bronchiectasis clinic there. Luckily, most appointments are done virtually since I live 2 1/2 hours away. I have my lab work done at my local hospital although the doctors prefer me to have my imaging done at a clinic satellite.

REPLY
Please sign in or register to post a reply.