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gretchenm (@gretchenm)

Allergic Bronchopulmonary Aspergillosis

Infectious Diseases | Last Active: Apr 11 7:41am | Replies (26)

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@daynap

Hello, I have been diagnosed with ABPA following pneumonia and aspergillosis in my right lung. First diagnosed in 2009, I have battled active ABPA and treated it with success 3 times. Each time, I was on a series of V-Fend 200 mg. two times a day for a minimum of 8 weeks with prednisone. When I started all of this my IgE levels were in the thousands, now they are in the 100s. It appears the key is keeping the IgE levels- inflammation in the lungs down. I was diagnosed again on Mar. 9th and after weeks of V-fend and prednisone, I am feeling better. I will know more on May 30th. I take Advair twice a day and albuterol as needed. This is a struggle, unfortunately one that is not curable, but it is treatable. Don’t get discouraged, do your research and keep pursuing the best treatment that is appropriate for you. Be sure to work with a good pulmonologist who checks blood, ct scans, chest xrays,etc. I suggest reading a report by Dr. David Denning from Manchester UK, Dierctor of the Aspergillosis Center.

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Replies to "Hello, I have been diagnosed with ABPA following pneumonia and aspergillosis in my right lung. First..."

Dear Dayna,
Thank you for your educational and encouraging response. I started with a new pulmonologist today, and he seems to understand ABPA. I finally felt like I had a doctor who understands the disease and has been around long enough to know what works and what doesn’t. The part you mention about keeping tabs on the blood values, i.e. IgE levels and eosinophils, this new doctor talked about and he talked about getting a current CAT scan. I think my other doctor had been around too long and thought I knew more than he did! I guess we should all be our own doctors. Thank you again.

Gretchen

Yes, we are our own best advocates for our health. Glad you have a Dr. that understands ABPA. You don’t want that mold to take hold and grow in your lungs as I did. Keep in touch about your treatment, I am very interested, particularly in the side affects you might experience. God bless.

can you tell me more about your symptoms I do not know what is going on with me. I have been to doctors and they do not know why I am wheezing. My lungs are clear and I do not have asthma

Kathleen, when I am doing well and not on medication, my symptoms are mild shortness of breath (SOB) and a little coughing producing clear mucous. I get SOB when I really exhert myself. When there are lots of particulates in the air, like a forest fire I become really SOB and need my albuterol. When the ABPA is active, requiring anti-fungals and steroids, I am very short of breath with only mild activity, and I wheeze and cough all the time. My coughing produces thick darker colored mucous and sometimes plugs of hard mucous. I will have a low grade-fever, develop night sweats and be very fatigued. I know I should see the doctor when I start to get shortness of breath doing normal activities and the color and density of the mucous changes. Since these changes can sneak up on me, I can simply ignore them for a time and put up with it – the longer I do that, the more difficult the treatment. So far I have been on this roller coaster 3 times. I am currently off all medication and doing well, but was in Shaver Lake, CA where there was smoke from a forest fire. When I returned home that evening, I coughed all night. Had to take medication and felt awful on Sunday. Today is a better day. I hope all this helps you. If your lungs show clear on CT or Xray, but you are still wheezing – I’d guess you need to treat the symptoms without much worry. But if your doctor only “listened” to your lungs and told you “all clear”, I’d insist on checking further and with another doctor if necessary. There must be a reason. If your lungs aren’t the culprit, have a doctor check your throat or upper airways. I was terribly hoarse and had difficulty breathing, found out by having a CT scan for my lungs that came up to my chin (accidentally) I had a 1.5 cm mass on my thyroid (non-cancerous). My thyroid came out and those symptoms went away. The thyroid was unusually large. My advice, leave no stone un-turned until you understand your lung symptoms and the causes. If you don’t think your doctor is thurough enough, get another doctor. Good luck Kathleen. Best regards, Dayna

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