Im 20 now and my fev1 is 45%. My story is, that when I was around 14-15 years old my fev1 dropped from 85% to 45% and ever since, its been this low. My lung CT looks for these circumstances pretty good. Thus my lung function should be better. A few weeks ago i went to the hospital because i woke up in the night choking for air. So my O2 levels were checked during the night and my oxygen levels were around 88-89% when i was sleeping. So i got like 0,3L oxygen to sleep, which helped. After my doctor found pseudomonas and some fungus in my lungs he put me on iv therapy. Anyway, to make long stories short: Right now i dont need oxygen, because im doing really good physio-therapy and i was always good with that.
But still my fev1 is 45%
Ok so i owe you some information:
A few weeks ago i was tested positive on pseudomonas and some sort of fungus that is pretty bad. But before that i had no pseudomonas or cepacia. I dont have an allergy, i already did a skin and blood test. My lungs are free and look good, really.
My routine is, i wake up, have my morning cough. Then I inhale Pulmozyme or salt saline depending how i feel like. After that inhaling i do about 45-60mins of physiotherapy. Then I inhale Colistin, which is a new drug im using due to the new pseudomonas infections. Before that i was on TOBI for like 10 years. Ok, then about 1 hour after the inhalation i usually dont cough anymore. I mean, I dont caugh all day, seriously. I dont know if thats normal or not, but mostly I dont cough during the day, unless i did a bad job on my physio.
Anyone have suggestions why my lungfunction is so low? Not even my doctor really knows why.
Oh, and also I have been having this fungus breakout on my skin. I got it when i was around the age of when my lung function dropped. I dont know if it has anything to do with it. But I still have it today and its really irretating because the skin flakes and it gets all red and itchy and when its at its worst it even bleeds a little. I had it on my skalp and then later in my face, on my back, my chest, everywhere!
I got those anti-fungus medications per IV, which did help against the fungus, but when i switched to the tablets it came back. I dont know whats going on its just frustrading. Keeps me awake at night.
Any kind of help would be great,
pardon my english im from Germany.
Greetings,
Alexander
But still my fev1 is 45%
Ok so i owe you some information:
A few weeks ago i was tested positive on pseudomonas and some sort of fungus that is pretty bad. But before that i had no pseudomonas or cepacia. I dont have an allergy, i already did a skin and blood test. My lungs are free and look good, really.
My routine is, i wake up, have my morning cough. Then I inhale Pulmozyme or salt saline depending how i feel like. After that inhaling i do about 45-60mins of physiotherapy. Then I inhale Colistin, which is a new drug im using due to the new pseudomonas infections. Before that i was on TOBI for like 10 years. Ok, then about 1 hour after the inhalation i usually dont cough anymore. I mean, I dont caugh all day, seriously. I dont know if thats normal or not, but mostly I dont cough during the day, unless i did a bad job on my physio.
Anyone have suggestions why my lungfunction is so low? Not even my doctor really knows why.
Oh, and also I have been having this fungus breakout on my skin. I got it when i was around the age of when my lung function dropped. I dont know if it has anything to do with it. But I still have it today and its really irretating because the skin flakes and it gets all red and itchy and when its at its worst it even bleeds a little. I had it on my skalp and then later in my face, on my back, my chest, everywhere!
I got those anti-fungus medications per IV, which did help against the fungus, but when i switched to the tablets it came back. I dont know whats going on its just frustrading. Keeps me awake at night.
Any kind of help would be great,
pardon my english im from Germany.
Greetings,
Alexander