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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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In my opinion (not personal experience with those places) National Jewish Hospital is tops and they are right there in your state!
Hello I am writing this from Denver- I am visiting NJH. If anybody is interested in details of a visit here please email me on my personal email and I will share details. I still have next week of appointments and a few tests that were not done the last week. I am however posting this for another reason. My sputum cultures started growing and I am devastated- pseudomonas aeureginosa, pseudomonas Gordona and candida were found. This makes me totally down because I really don’t know what wrong I am doing.I am seeing an ID doctor tomorrow and hope to find some answers. Last week dr kasperbauer said they don’t treat pseudomonas or candida unless there are symptoms. And I don’t have symptoms but it’s so upsetting to learn I catch so may bugs. Has anybody had these?
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1 ReactionGtokaren,
I do not know how to find your personal email address.
I start at NJH on Jan 31st and am anxious to hear about your views.
I will be flying there from Bangor Maine, then on to our winter home outside of Phoenix for the winter.
I was misdiagnosed by a pulmonologist in Az last March. Returned to Maine in May and traveled 200 miles to a pulmonologist in NH where I was before retiring to Maine because the pulmonology clinic in Bangor (one hour from where we live) had closed.
He diagnosed me with bronchiectasis and I tested positive for MAC.
I am nervous about pseudomonas as my husband had it this past summer in a wound on his foot and lost a toe due to the infection getting into the bones.
We all seem to have various apprehensions.
I never heard of this disease or these different bacterial infection before.
I am learning so much reading these messages. I am so glad I found this site.
Any info you can share will surely help many of us.
Thank you,
Camille
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2 Reactions@camilleups Look at the top right of this page. Click on the envelope icon and you can DM (direct message) @lilianna .
Sorry to hear of the missed diagnosis. Sadly, easy to do because the disease(s) are rare. My bronchiectasis is due to an immune disorder, which was "missed" for over 20 years! I was not a clear cut case apparently.
It's great that you are seeking treatment at NJH as they specialize in bronchiectasis/MAC. Most pulmonologists do not. Wishing you safe and easy travels to CO!
I have been with dr Aksimet at Rochester Mayo for 2 years. He is a bronch expert.
Camille,
I am sorry to hear about your doctor problems, I can sympathize since I live in Bridgton, Maine. I am lucky do have found out about my lung problems, bronchiectasis and infections. I was referred to the Chest Medicine Clinic in Portland, Maine. I did not think the first doctor that I saw was doing anything to prevent me from getting sick, again, so I asked the clinic manager for a second chest medicine doctor. The second was is great, referred me to Allergy and Asthma Associates, where test showed I had CVID-Common variable immune deficiency. So, this was the cause of many of my problems, I am now doing weekly infusions, this has prevented me from getting sick and kept my lung problem under control. I also use saline 7% nebulizer, Breo, reduce dose to 100. and musinex. If you can see the chest medicine doctors, I recommend Dr. David Cohen, he takes it seriously.
Thank you for your kind response.
I am hoping I can get all the care I need for this winter from NJH. They have me there for 8 days. They have 34 appointments scheduled for me already!!! Yikes!
After that I will hav to see where else I will be seen when in Maine. Thank you for the referral to Dr Cohen.
I spend 6 months in Az and 6 months in Maine.
Thank you,
Camille
I am glad you got into NJH, What kind of appointments do you have? I did have a lot of breathing test, bronchoscopy and other.
Please let me know and if you are diagnosed with CVID, glad to be a support for you. It can be a tough to treat by youself, which is the preferred method.
Marcia
I know Mayo in Rochester MN has a pulmonary broncheictisis subclinic. I was set up to go then my AFB stain and pathology came back negative. That’s THE PLACE to go or you can try National Jewish hospital in CO, also specialized there.
Thank you! I read in the US News international ranking - Rochester clinic came up #1. I think I’d like to go there, although NJH (#11) would be a bit more convenient for sure.