My daughters just had a broncoscopy that showed a lot of fungus and she cultures aspergillous. Her pft's are always jumping up and down a lot. ( 30% or so every other month) She came home from the hospital of Sporanox. What are any of your experiences with this? Did the Sporanox help? She does not have APBA. Thanks for any info.
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aspergillous
- Thread starter anonymous
- Start date
Sporanox is a good choice for helping with Aspergillous. Also doin TOBI and pulmozyme by nebulizer will help.You mentioned your daughter is at 30% FEV1? Is that correct? That is very low and her doctors should be talking lung transplant. Have they?Joanne Schumluckylungsforjo@aol.com
Thank you for the reply. no, her fev1 is not 30%. It is flucuating about 30% every other month. Up and down so much that the docs are very frustrated. She is only 6 yrs. She has had 4 cleanouts in the last 10 months. When she came out of the hospital in Sept. her fev1 was the highest it has ever been, 90%. When admitted in Nov. it was 73%. Her lowest was 55%. She has been on Tobi for 3 years. Pulmozyme also. She even came home on Colistin in Sept. becuase she cultured resistant to Tobi. We are hoping that by getting the apergillous under control her pft's will get more stable. She hasn't cultured Pseudomonas since she was 3, but they think it's there. If someone is fluctuating this much isn't it kind of late to wait till they are down to 30% to get a transplant? I don't feel she needs one now, but in the future wouldn't want to wait too long. Thanks Again!
MouseyMerlin
New member
Hi,I was put on prednisone and my aspergillous went right away.. I have found that I can fluxuate about 20% because I have cultured Pseudo since I was 4.. (Im going on 18 now).. My doctor has told me not to worry about the fluxuation.. some days the lungs just feel better then others.. and that when it comes time (if it comes) that I need a transplant, that they will take into concideration my fluxuation.. dont worry, it wont be too late.. Im allergic to tobi, both inhaled and IV so i use only colistin (somtimes), Pulmozyme once a day, and then Fortum, and cipro IV's.. its worked just fine, and I have (at best) 80FEV1 and lowest 60FEV1.. hope they can get rid of it!
Thanks for clarifying the 30%.Is 30% FEV1 too late if they are fluctuating a lot? I am not sure really. I would tend to say no only because many of us fluctuate a great deal between infections and then bounce back again. Surgeons do not want to do this type of surgery too soon, as there are risks, so if someone has a trend of flutuating, I would guess they would wait to list. Ideally the surgeons would like to tx the day before you will die naturally, but of course, by then you are much to sick to survive the surgery.Good luckJoanne