D
Dank
Guest
Has anyone been on a "pulse" dose of steroid to help with antibiotics/abpa? It seemed to do some good, but holy crap was that an awful experience. The dose in the hospital made me incredibly awake and wired. I slept for maybe 3 hours each of the three nights, and then I was released shortly after the third dose to resume my antibiotics at home. It was brutal just trying to get my brain to work to get medications together and get my way home.
I cultured my typical pseudomonas (and something new), with a huge drop in lung function and x-ray that showed a large portion in my large airway covered in a giant mucus plus - it was time for some IV antibiotics for me. I got my picc in 2 weeks ago, and spent an entire week at home on IVs before I checked myself into the hospital. My breathing was labored more than usual, and I realized I felt like I wasn't convinced the antibiotics were doing enough for me this time. I got into the hospital, my IGE level (which they use to monitor my ABPA) was around 3000~+ (normal people go upto 300, apparently). I've seen it as high as 6000 without many of the abpa symptoms. Now I'm feeling the symptoms and they didn't seem to get better with IVs - so a hospital visit seemed most appropriate. They discovered a GIANT mucus plug constricting a large airway in the middle of my lung.
In the hospital, the doctor recommended a pulse dose (a really high short dose) of steroid, to get my apba under control and to allow antibiotics to work better. The difference on my xray was incredible.
Now a few days later, I'm still getting over this "fog" the steroid put me in. Easily one of the worse medical experiences I've had thus far. Not being able to think clearly is really tough when going through being sick and trying to stay positive from CF, and then pair that with my inability to find a job and running out of borrowed money to live, and it's been quite awful! Thank everything I am that my girlfriend was here to keep my life moving, just as normal. Wish it was easier for everyone to actually focus on your health. This "american dream" we live in of: work till you die (erm, retire?) doesn't really work when I'm falling apart in my late 20s. More wishful thinking wishing I could change things out of my control.
Anyone had a similar experience w/ the steroid?? I'm interested if the pulse dose of steroid is a new thing, or if it's been used in the past for other things with CF.
I cultured my typical pseudomonas (and something new), with a huge drop in lung function and x-ray that showed a large portion in my large airway covered in a giant mucus plus - it was time for some IV antibiotics for me. I got my picc in 2 weeks ago, and spent an entire week at home on IVs before I checked myself into the hospital. My breathing was labored more than usual, and I realized I felt like I wasn't convinced the antibiotics were doing enough for me this time. I got into the hospital, my IGE level (which they use to monitor my ABPA) was around 3000~+ (normal people go upto 300, apparently). I've seen it as high as 6000 without many of the abpa symptoms. Now I'm feeling the symptoms and they didn't seem to get better with IVs - so a hospital visit seemed most appropriate. They discovered a GIANT mucus plug constricting a large airway in the middle of my lung.
In the hospital, the doctor recommended a pulse dose (a really high short dose) of steroid, to get my apba under control and to allow antibiotics to work better. The difference on my xray was incredible.
Now a few days later, I'm still getting over this "fog" the steroid put me in. Easily one of the worse medical experiences I've had thus far. Not being able to think clearly is really tough when going through being sick and trying to stay positive from CF, and then pair that with my inability to find a job and running out of borrowed money to live, and it's been quite awful! Thank everything I am that my girlfriend was here to keep my life moving, just as normal. Wish it was easier for everyone to actually focus on your health. This "american dream" we live in of: work till you die (erm, retire?) doesn't really work when I'm falling apart in my late 20s. More wishful thinking wishing I could change things out of my control.
Anyone had a similar experience w/ the steroid?? I'm interested if the pulse dose of steroid is a new thing, or if it's been used in the past for other things with CF.