Anyone have Pulmonary Aspergillus?

Posted by patbrennan @patbrennan, Sep 15, 2022

Does anyone know of a specialist in Chicago area treating Aspergillus fumigatus and/or Aspergillus terreus in lung?

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

I certainly can’t address your question about physicians who treat your diagnosis but can tell you that my husband had same and getting an accurate diagnosis was the most difficult part. He was prescribed voriconazole which was effective. Aspergillosis left him with Bronchiectasis which is why I am in this support group. Don’t wish that for you!

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Two years ago I had lung cancer surgery and on follow-up the nurse wrote down “Bronchiectasis” as something I should consider having. No physicians have mentioned this after my surgery and none in relation to my Aspergillus Terry’s or A. fumigatus

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On looking back at my medical records Bronchiectasis was mentioned by nurse after lung cancer surgery and in separate Radiologist Report of chest.

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Does anybody out there have any experience with this sputum culture found in your lungs? I was also diagnosed with Bronchiectasis, both just a few weeks ago. Headed to the infectious disease doctor in 2 weeks, very anxious!

Cheryl

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@clynnford

Does anybody out there have any experience with this sputum culture found in your lungs? I was also diagnosed with Bronchiectasis, both just a few weeks ago. Headed to the infectious disease doctor in 2 weeks, very anxious!

Cheryl

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@clynnford, I moved your message to this existing discussion with @totty and @patbrennan
- Anyone have Pulmonary Aspergillus? https://connect.mayoclinic.org/discussion/pulmonary-aspergillus/

Fellow members @franthony @windwalker @crackergirl @thumperguy @brigby @heathert @marilynk also have experience with aspergillus.

I can imagine that you are anxious. What questions are running around in your head that you'd like to ask the group?

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Re aspergillosis
My husband had aspergillosis about two years ago. Once identified he was prescribed
voriconizole. He was told he was free of it spring 2021 by his ID. Shortly after that he developed a chronic cough that has gotten progressively worse. He was on a waiting list at Mayo for over a year (due to COVID) and finally was diagnosed elsewhere with Bronchiectasis. Unfortunately a year was lost that might have helped him. He has very recently become a patient of Dr Patrick Flume at MUSC and was told he has Traction Bronchiectasis and Pulmonary Fibrosis. We are optimistic he can be helped and hope that you have found a good ID. Be your own best advocate!
This support group is very helpful.

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Yes, I had it and lost my right lung to this!!! Was put on antibiotics by IV’s multiple times (huge doses) and put on the voriconizole also but antibiotics didn’t help and took the voriconizole for 6mths after surgery.

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@clynnford

Does anybody out there have any experience with this sputum culture found in your lungs? I was also diagnosed with Bronchiectasis, both just a few weeks ago. Headed to the infectious disease doctor in 2 weeks, very anxious!

Cheryl

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Hello Cheryl, When we have bronchiectasis, our lungs are essentially petri dishes, ready to grow bacteria, because they do not effectively clear mucus.
Aspergillus is a bit more uncommon, but infectious disease docs are the right ones for treating it.
When you were diagnosed, was it by a pulmonologist, or your primary provider?
Were you given any instruction about airway clearance to keep more infections from settling in?
Sue

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@totty

Re aspergillosis
My husband had aspergillosis about two years ago. Once identified he was prescribed
voriconizole. He was told he was free of it spring 2021 by his ID. Shortly after that he developed a chronic cough that has gotten progressively worse. He was on a waiting list at Mayo for over a year (due to COVID) and finally was diagnosed elsewhere with Bronchiectasis. Unfortunately a year was lost that might have helped him. He has very recently become a patient of Dr Patrick Flume at MUSC and was told he has Traction Bronchiectasis and Pulmonary Fibrosis. We are optimistic he can be helped and hope that you have found a good ID. Be your own best advocate!
This support group is very helpful.

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Hello Totty. I had aspergillus back in 2016 and was able to clear it after 30 days by taking inhaled tobramycin. I have been trying to get a referral to see Dr. Flume. How do you and your husband like him?

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@grandma5

Yes, I had it and lost my right lung to this!!! Was put on antibiotics by IV’s multiple times (huge doses) and put on the voriconizole also but antibiotics didn’t help and took the voriconizole for 6mths after surgery.

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Hi there. Wow! That is very sobering to hear that you lost a lung to aspergillus. How are you doing with one lung?

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