good lung function but fatigue and co... - Aspergillosis and...

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good lung function but fatigue and coughing persists

jminical profile image
5 Replies

I have a diagnosis of chronic cavitary pulmonary aspergillosis. I was born with cavitary pulmonary malformations, and that is why the docs think I was susceptible to aspergillosis. Anyways, last fall (about a year ago) I began treatment with voriconazole. It really helped for a while--- I had been so sick I could barely walk to/from class, and had to be in bed most of the day. Recently, in the past month, my coughing and fatigue has returned. My lung function tests are good-- I have full lung capacity. But I feel sick, coughing more and very tired.

What should I do? Is this worth going to the doc over if my lung function is good?

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jminical profile image
jminical
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5 Replies
Coppernob profile image
Coppernob

Are you seeing a top doc in aspergillosis. I see Andrew Menzies-Gow at the Brompton. He said if my problems returned he had some IV tricks up his sleeve. Don't know if that helps.

DrGraham profile image
DrGraham

Yes definitely worth reporting to your doctors as there are many possibilities. It might be a good idea to have the levels of voriconazole in your blood checked. Not all labs can do this though if you are in the UK the relavant tests can be carried out by the Manchester Mycology Reference Centre mycologymanchester.org/inde...

The National Aspergillosis Centre could be the best place for you to find treatment in the UK - you can ask for a referral from your GP.

jminical profile image
jminical

thanks, I will call my doc. I'm in the U.S. unfortunately-- it seems like you all in the U.K. have way more options!

MAURY profile image
MAURY in reply to jminical

You should try theNational Jewish Hospital in Denver. I have been treated there for 15 yrs. they are familiar withABPA.

luckyladyb profile image
luckyladyb

To have ABPA, you need a positive mold allergy test.

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