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In a message dated 12/17/2003 7:44:34 AM Central Standard Time,

hasoloff@... writes:

To the members: Thanks for the welcome to this wonderful list. I want

you to know I am not jealous the least bit because I had to share the

spotlight with a Golden Labrador Retriever! I often breathe with my

mouth open too. n's advice to blow dry a dog's hair after a bath

will come in handy for me too.if I ever grow some hair back. I must

confess that I am not an expert on aspergillus, but I can't seem to get

rid of the stuff after two months of Sporanox. I take the Sporanox with

diet Coke, which reminds me of the Castoria I was given as a child. Our

dog has gone to doggie heaven, and our children have moved away. to

New York City, and to Hawaii Kai, Hawaii. To paraphrase the

late Dr. Luther King, Jr., " free at last! " Hal

WOW and you still have a sense of humor!!!!! I thought after you raise your

kids you go into a loony Ben!!!!! LOL!!! There really is life after kids??????

Deb A

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My oldest has pseudomonas in her sinuses. So are you saying there is know way

of getting rid of it out of you sinuses? We have been trying everything.

Neblizing antibiotics through her nose and nothing seems to work. Deb A

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Hal:

Welcome!

Ricky has been on Sporanox almost continuously for over a year now.

Whenever he goes off of it, he gets very sick and ends up on Orapred. I'd

much rather have him on Sporanox than on prednisone!!! Is this the first

time you've had aspergillus pop up, or have you had it and been able to get

rid of it in the past?

Becky , mom of Ricky (8) with CF and Andy (5) no CF

http://www.beckydavis.com

San , CA

Gosh!

To the members: Thanks for the welcome to this wonderful list. I want

you to know I am not jealous the least bit because I had to share the

spotlight with a Golden Labrador Retriever! I often breathe with my

mouth open too. n's advice to blow dry a dog's hair after a bath

will come in handy for me too.if I ever grow some hair back. I must

confess that I am not an expert on aspergillus, but I can't seem to get

rid of the stuff after two months of Sporanox. I take the Sporanox with

diet Coke, which reminds me of the Castoria I was given as a child. Our

dog has gone to doggie heaven, and our children have moved away. to

New York City, and to Hawaii Kai, Hawaii. To paraphrase the

late Dr. Luther King, Jr., " free at last! " Hal

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Hi: I've had aspergillus for several years. As it usually colonizes in

the lungs and sinuses, it is very difficult to get rid of it completely.

However, I've been having a rough time with staph a. and pseudomonas, so

when they flare up, the aspergillus joins them.no common decency

whatsoever! It does change the focus from my osteo, arthritis, reflux

disease, etc. and being a nuisance around the house. Generally, Sporanox

will send it back to the area where the colony hides, but when it

invades the sinuses, it is far more difficult to overcome. I'm much

better now than a month ago, as the antibiotics worked well on the staph

and pseudomonas. If your doctor has not suggested it, perhaps you should

discuss a liver function test now and then when taking Sporanox for

extended periods of time. Don't frighten Ricky! This does not mean he

will have to eat liver.just have his tested. Hal

Gosh!

To the members: Thanks for the welcome to this wonderful list. I want

you to know I am not jealous the least bit because I had to share the

spotlight with a Golden Labrador Retriever! I often breathe with my

mouth open too. n's advice to blow dry a dog's hair after a bath

will come in handy for me too.if I ever grow some hair back. I must

confess that I am not an expert on aspergillus, but I can't seem to get

rid of the stuff after two months of Sporanox. I take the Sporanox with

diet Coke, which reminds me of the Castoria I was given as a child. Our

dog has gone to doggie heaven, and our children have moved away. to

New York City, and to Hawaii Kai, Hawaii. To paraphrase the

late Dr. Luther King, Jr., " free at last! " Hal

-------------------------------------------

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

------------------------------------

_____

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The doc is on top of it... His liver function tests are done regularly

(every 3 months when we see the CF doc) and they've been fine so far. :)

He's not cultured the aspergillus in his sinuses yet, thankfully, but the

pseudo hides there as well as in his lungs so who knows what will happen

next!

At least on the Sporanox he seems to be able to breathe and function as well

as possible, which is nice. Just hope it doesn't get any worse! Last year

when he was in the hospital, before we discovered the aspergillus, he was in

for 2 weeks on Solumedrol and on continuous albuterol nebs for the first

four days. This had him shaking uncontrollably. It was awful. Also, the

Solumedrol really messed up his digestive system and he is on Miralax all

the time now!

Ugh. The joys of CF.

Becky , mom of Ricky (8) with CF and Andy (5) no CF

http://www.beckydavis.com

San , CA

RE: Gosh!

Hi: I've had aspergillus for several years. As it usually colonizes in

the lungs and sinuses, it is very difficult to get rid of it completely.

However, I've been having a rough time with staph a. and pseudomonas, so

when they flare up, the aspergillus joins them.no common decency

whatsoever! It does change the focus from my osteo, arthritis, reflux

disease, etc. and being a nuisance around the house. Generally, Sporanox

will send it back to the area where the colony hides, but when it

invades the sinuses, it is far more difficult to overcome. I'm much

better now than a month ago, as the antibiotics worked well on the staph

and pseudomonas. If your doctor has not suggested it, perhaps you should

discuss a liver function test now and then when taking Sporanox for

extended periods of time. Don't frighten Ricky! This does not mean he

will have to eat liver.just have his tested. Hal

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Hi: Staph and/or pseudomonas in the sinuses are very difficult to get

rid of due to the structures of the various soft tissues and cavities

involved. However, there are a range of antibiotics and methodologies to

help alleviate sinus infections, but it is more difficult with

aspergillus where the treatment is limited. I don't want to begin to

tell you about my personal experiences with sinus infections, polyps,

surgeries, etc. I go back to the days when being drawn and quartered was

the only way to get relief. Today, treatments are relatively more

humane. Those of us with CF have to adjust to living with an insidious

disease that makes us susceptible to bacteria, viruses, and mold. The

child that is able to be taught early to listen to what their body is

saying and have the discipline necessary to deal with the traumas

obviously has a better chance to survive. Now, wouldn't that be nice if

every little one just acquiesced like a good little do-bee? I never was

sure which would get me first.CF, raising two children into (and beyond)

adulthood, or my creditors. Many times I thought it was a conspiracy.

Hal

Re: Gosh!

My oldest has pseudomonas in her sinuses. So are you saying there is

know way

of getting rid of it out of you sinuses? We have been trying everything.

Neblizing antibiotics through her nose and nothing seems to work. Deb A

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Hard to totally irradicate it, but after my last roto-rooter sinus surgery, they

started

me on a regimen where I see my ENT each week and he infuses Tobramycin and/or

other antibiotics into my sinuses--and all I can say is that my mouth is closed

(par

don the pun) for the first time in my life as I can now BREATHE through my nose!

I still snore, but that is not caused by my sinuses! Significant Other (SO)

sleeps

right through it!

Love to all at cfparents, long-standing and new members!

n

Re: Gosh!

My oldest has pseudomonas in her sinuses. So are you saying there is know way

of getting rid of it out of you sinuses? We have been trying everything.

Neblizing antibiotics through her nose and nothing seems to work. Deb A

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In a message dated 12/17/2003 10:30:38 AM Eastern Standard Time,

gdattig5@... writes:

> WOW and you still have a sense of humor!!!!!

Deb ------remember two things in life........the mind is the first to go and

sometimes all you have left is a sense of humor!!!!! LOL.........

Rosemary in NY with 3 children (13, 11 and 7)

with CF. I have a dog named TOBI and have

coined the phrase " BREATHE DAMMIT "

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lived for a year on Sporondox.........We almost changed his name to

Ryaonox...lol

Rosemary in NY with 3 children (13, 11 and 7)

with CF. I have a dog named TOBI and have

coined the phrase " BREATHE DAMMIT "

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Can I ask what your IGE levels were? No one tested my sons liver!!!!!!!!!

Rosemary in NY with 3 children (13, 11 and 7)

with CF. I have a dog named TOBI and have

coined the phrase " BREATHE DAMMIT "

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In a message dated 12/17/2003 11:53:39 AM Central Standard Time,

hasoloff@... writes:

Hi: Staph and/or pseudomonas in the sinuses are very difficult to get

rid of due to the structures of the various soft tissues and cavities

involved. However, there are a range of antibiotics and methodologies to

help alleviate sinus infections, but it is more difficult with

aspergillus where the treatment is limited. I don't want to begin to

tell you about my personal experiences with sinus infections, polyps,

surgeries, etc. I go back to the days when being drawn and quartered was

the only way to get relief. Today, treatments are relatively more

humane. Those of us with CF have to adjust to living with an insidious

disease that makes us susceptible to bacteria, viruses, and mold. The

child that is able to be taught early to listen to what their body is

saying and have the discipline necessary to deal with the traumas

obviously has a better chance to survive. Now, wouldn't that be nice if

every little one just acquiesced like a good little do-bee? I never was

sure which would get me first.CF, raising two children into (and beyond)

adulthood, or my creditors. Many times I thought it was a conspiracy.

Hal

Hal,

My daughter has had 3 sinuses surgeries to far and I just found out a month

ago that she has two polyps growing on the right side. I feel like ti is an

endless battle. You put them through the misery of surgery and they are back

within a year. We have done cultures in her nose and found pseudomonas in her

nose

and we have done bronchoscope and she does not have it in her lungs yet but

with it being in her sinuses she has a great change of it getting there. Our

doctor would really like to see her on this gargle that they are making in

Sweden. It is in studies her in the States but not approved yet. Our doctor is

trying to see if he can get it for her. It would be so nice and a lot easier

then

having to do antibiotics all of the time. She has a little sister that has CF

too. She doesn't have polyps yet and doesn't have as much problem with

pseudomonas so her big sister feels like she is being picked on a lot. Did you

have

any siblings with CF? Deb A

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In a message dated 12/17/2003 9:26:35 PM Central Standard Time,

ROSEMARY3FOR3wCF@... writes:

Deb ------remember two things in life........the mind is the first to go and

sometimes all you have left is a sense of humor!!!!! LOL.........

Rosemary in NY with 3 children (13, 11 and 7)

with CF. I have a dog named TOBI and have

coined the phrase " BREATHE DAMMIT

YA I Know Rosemary my mind left me a long long time ago and I don't know

where my sense of humor went!!!! I think I lost that a long long time ago

too!!!!

Deb A

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