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Hi All! I’m joining this group with the hope to learn and find support. I was diagnosed last year with bronchiectasis, MAC and have cavities. I have not started any treatment but am having more symptoms and am concern that the bacteria has gone to my other lung. Looking forward to hearing recommendations. I’m also thinking of reaching out to the NJH and Mayo for opinions. I live in Los Angeles, can anyone recommend a doctor with experience in MAC. Thank you.
Replies to "Hi All! I’m joining this group with the hope to learn and find support. I was..."
Good morning Haydee! I am so glad that you joined our group. Per our phone conversation, I did look in my notebook and did not have a listing for a recommended pulmonologist in your area. I will 'tap' some members on this site that live in Southern Ca. (& Ca in general) to see if they can help you. @unicorn, @dmarks, @onana, @ronaf, and anybody else; please chime in. Haydee, you will need both a good pulmonologist and Infectious Disease Dr. Have you had a chance to read older posts here? You can call me if you need help navigating this site.
@haydee, I add my welcome. You'll notice that I moved your message to this "new to the group" discussion. @aerogirl also recently joined the group. This forum was started in 2011 and remains very active to today. You can see the origins of the group and meet most of the members in this discussion
– (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/
I encourage you to browse the topics of the MAC group (https://connect.mayoclinic.org/group/mac-bronchiectasis/). Continue to ask questions.
Hi Haydee! Scroll up and see my post to you. So glad that you found us.
haydee, I’m so sorry. The best investment I ever made was going to NJH in Denver. You will know you’re seeing the best experts in the US for bronch and Mac. Call them direct. You will not get a recording. You will speak to a real live person who will transfer you to the right real live person to set up your first appointment. I flew to Denver. Expensive. I stayed at a hotel. More money (but NJH has a list of hotels that give discounts for NJ H patients). My doctor there is Gwen Huitt, but anyone you get will be so knowledgeable. Your doctor back home can consult with them after NJH sets up your treatments. Do it. It really is your life.
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Good morning Haydee! I am so glad that you joined our group. Per our phone conversation, I did look in my notebook and did not have a listing for a recommended pulmonologist in your area. I will 'tap' some members on this site that live in Southern Ca. (& Ca in general) to see if they can help you. @unicorn, @dmarks, @onana, @ronaf, and anybody else; please chime in. Haydee, you will need both a good pulmonologist and Infectious Disease Dr. Have you had a chance to read older posts here? You can call me if you need help navigating this site.