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Bronchiectasis treatment - best places to go?
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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Any recommendations for Southern California for these conditions?
Thanks
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.
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2 ReactionsGo to this link and you can find clinics.
https://ntminfo.org/united-states-of-america/
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3 ReactionsI'd love to more about the NJH out of state treatment, I'm going in June
Hi friends -
I'm at NJH health right now, and I can tell you it's very worth the trip. The care is comprehensive and amazing, I am planning to share my list of takeaways on the forum at the end of my journey!
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6 ReactionsI'm so happy to hear that and I look forward to your takeaways . I don't go until June but I am ready to pack my bags now
Thank you for sharing!
@jill6063 I'm planning a trip to NJH and looking for your takeaways from your trip there. When or where did you post them?
Hi @deb222 -
I actually spent almost an hour putting together the takeaways only to be told my message was too long to post and all was then lost. 🙁 I wonder if you message me personally if that will make a difference. I once tried to share personal email info and was told me can't do that, so I'm not sure of the best way to proceed. Maybe one of the moderators can help us? Thanks and I'm happy to help in any way I can!
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1 Reaction@jill6063 You may share your email address directly with another member in a Private Message.
Here's a tip about long messages that I learned (after losing many) - make a Word or NotePad document on your computer and save it. Then copy and paste to Mayo Connect. If you get a "too long" warning, simply cut and paste it as 2 or three consecutive messages.
Please consider doing this instead of a private message so many members can benefit from your review. You would be doing a great service to our "silent majority" - did you know that more people just come here to read and learn than the number who actually post?
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2 Reactions@jill6063 @sueinmn I noticed that if I am typing a message and want to look something up and don't open up a new tab in the upper tool bar first, I will loose the message I was typing in Mayo.
Then what I noticed is if I am writing and want to look something up and be sure to not loose my message that I am preparing, I open a new tab first in the upper tool bar and do my researching and then go back to my message, this keeps me from losing the message I was typing. Might do a trial test to see if this works for you.
Also, Sue...if one's message is long couldn't you just do another message to allow for all one wants to post? (Sorry I just reread your message, that's what you said )
Barbara