aspergillus fumigatus

I had Mac for 3 years, a short break then aspergillus for the last 18 months. Taking voriconazole daily, surgery is an option. Yep, just no stamina for long time. I learned to manage it.

I also have aspergillosis fumagatos. It was discover from a biopsy in August of 2022. I am just finishing Vfend now in 2024. I have an upcoming appointment and will probably have a CT scan ordered at that time. I have been MAC free since 2022. Sometimes we exchange one thing for another. Aspergillosis is more curable than MAC according to my infectious disease doctor at UMASS. Beyond tired is how I have felt from it. irene5

Irene and Rick, how did your doctor decide that it had to be treated? What were your symptoms? And Irene, after it was discovered in 2022 did you start the treatment right away and continue until now or the doctor waited? There are so many questions. I just returned from a longer walk- the weather is so beautiful today here around Chicago- and my energy is zero. Thank you

Liliana, I started medication right after it was discovered at UMass University hospital in August of 2022 with a minimally invasive robotic surgery.,The medication caused me some side effects so I was changed to a more expensive one. (Cresemba ) Insurance covered it only briefly so I was put back on Vfend. No waiting! Aspergillosis is bad and should not go untreated. I had headaches, chills, fatigue- very similar symptoms to MAC which apparently went away after being treated with Arikayce. Headaches and face pain were always my number one symptom. Symptoms of fever, chills, lack of appetite were inconsistent as I didn’t have them daily. My weight started dropping like it did with MAC. My lungs were so inflamed from it I am sorry to say my lung collapsed, and I unfortunately became a victim of Murphy’s Law after that. The doctors don’t want to go back down into my lungs for obvious reasons so they have relied on scans to decide how long I have to be on the Vfend. I am finally finishing up with it. I’m sure a scan will be scheduled at my next appointment. I am grateful each day!! Irene

Also Lilianna the fatigue is a way of life I find with MAC or PAF, I was toast until after one in the afternoon most days. I had a few good hours in the day-that’s it. I am much better now! Aspergillosis will spread if not treated. It is more curable than MAC according to my infectious disease doctor. Irene

Thank you, Irene for your response. I am sorry you went through all this. I do not know what the doctors will decide about me; I emailed NJH today asking for their opinion and tomorrow I am seeing my ID doctor (who is always in a hurry). I do not have all your symptoms except being tired. I am still being treated for MAC so thinking about another set of meds scares me. I must go through it whatever it will be. We all have our challenges. My best regards and stay healthy.
Lilianna

For me, it started as what we thought was a cough from a re-occurrence of mac and restarted the big 3. Then a 3 day bout of Hemoptysis followed by another 3 day bout of Hemoptysis. Tests for mac kept coming back negative but aspergillus started to show. I had a pet scan and a super dimension bronchoscopy that ruled out everything but aspergillus. Then debris/fungal ball has developed but controlled by vfend for 15 months so far. Once aspergillus was detected, I took myself off symbicort as njh had already added Spiriva and this seemed to be the move that made the biggest improvement. Other than the lung & stamina, I'm in pretty good shape as I have been tested head to toe almost yearly.

Rick and Irene.
I just read your posts above. First thank you for all your reponses that you have taken time to give.
I am waiting for a test result after having sent in the specimen vile with what I bring up. Just hope it was truly a good.
Thinking of you both and wishing you enough hours of feeling good to do what you want to do.

I had pneumonia for about a year. It developed in the cavitation pneumonia. And then Aspergillus was growing in me. Tried to treat it with infusions every morning and night at the hospital. But I kept getting worse. So I had the upper two lobes in my right lung removed. They removed them from my back though a eight inch incision. That was in January 2021. I had CT last month and I don't have to have another one a year. Life is different but it's not over. Wish all the best.

Good to hear from you Jeff. My debris/fungal ball has been surprising stable with vfend for now 15+ months so I'll keep kicking surgery down the road as my quality of life has been equally surprising. I had a nasty bout with first time covid but it again, surprisingly, it did not effect my lungs.