Anyone knows?

[Rickengelage]

Hello

So im declining fast, my lungs function dropped from 90% to 45% fev 1 within a few months

No antibiotics are working/recovering anything.

Also weight is going down fast.

I never had any issues witj cf before, not much atleast

Its really weird.

Its since a year or so.

Im thinking ive got ABPA

My currents symptons are:

- Coughing up dark green mucus with hard pieces in it.

- I feel like i constantly have to clear my throat, its harder to talk clearly.

- rapid weight and lungfunction loss, not responding to antibiotics used against my known lunginfection.
( i do eat like crazy and get more than enough calories btw. )

- tight chested, and often sticky mucus.

- tired, fatigued easily.

- sneezing sometimes.

- and highly sensitive to smells like parfume.

Has anyone ever had ABPA and does it sound familiar to u?
I heard its really difficult to diagnose ABPA.
My docs are looking for it.
Standart testing of mucus only.

Anyone got tips to diagnose or rule it out quicker?

And how was it to have abpa?

Hope anyone has some more expierence on this to share!

 

[2005CFmom]

Have they done a blood IGE test yet? Testing the sputum won't diagnose ABPA as far as I know. My daughter cultures aspergillus but they have not treated it because her IGE levels are still low.

 

[imported_Momto2]

Have you had testing for diabetes? (not just an a1c and a random blood sugar #, but complete monitoring over a 24-48 hour period).
CF related diabetes plummeted my lung function and gave me all the symptoms of a serious infection for well over a year, but antibiotics never helped, since it was severe inflammation, not infection. Even though I had regular appts every 3 months and the usual blood sugar monitoring, it DID NOT CATCH the diabetes. Not until I got desperate, bought a kit at the local drugstore and monitored my blood sugar 14 times a day for a couple of weeks. The diabetes doc looked at the results of my monitoring and said OMG, you're clearly a diabetic! I was put on insulin immediately. A1C's are often falsely low in CF, and random bloodsugar testing may not catch it. But it devastated my lungs over a pretty short period of time. Might be something you want to rule out.