Kathleen (long)

[Guest guest]

Hi

Kathleen,

It seems

you and I have things in common.

Have you

been on this list a long time?

I was wondering if there are any other people.

I am

trying to gain some kind of control over this.

My goal is

not to take prednisone.

As a child

I had attacks of wheezing that lasted for days.

There were

no rescue inhalers then.

When I go to the doctor, they listen to my lungs and check my oxygen.

I am

always ok, because I am just sitting still and it’s clean in there.

My

symptoms are shortness of breath, tightness and EXTREME fatigue.

I guess

that is considered asthma….

I think

the reason I am confused is that this is different then what I experienced in

childhood.

Now I have

the *new* diagnosis of

bronchiectasis and allergic aspergillus.

***I may have something called Churg-Strauss, but can't get a

positive diagnosis because of the steroids***

I just looked this up. I can see why you can’t get a diagnosis.

I get my blood tested once a month and know how different it is when I am

prednisone. I read the symptoms and I could have that also. It is very rare,

but so is Aspergillus in the US.

> I wanted to take Xolair. I think my IGE is too high to qualify.

***I was right near the borderline because of the steroids***

Do you think prednisone lowers IGE? I don’t think it does. My

doctor thinks it does. I haven’t found anything online that supports that.

I remember being on prednisone and having over 2,400.

> Is there any way you can find out your numbers?

***I'm sure it's one of the tests they'll do again when I'm at

National Jewish later this month. I could let you know then.***

I would appreciate it. If yours comes back high like mine, then

maybe I would think it is not aspergillus.

Is that where you have your blood drawn? I go to a lab and request

a copy sent to me.

***Have they done a bronchoscopy? They should be able to tell by

that and I know sometimes it shows up on chest CT's?***

YES, I had one in 2005, when they thought I had cancer. I was set

up to have the mass removed before the results came back. To test for

aspergillus takes about 5 weeks. I had a pet scan. It also seemed to point to

cancer. I went in for surgery to remove the mass, they prepared me with an IV.

The surgeon came in to talk to me and said, he was canceling, due to an x-ray

done the day before in pre-admission testing. There was a little improvement.

He sent me home and I had no idea what was wrong. In about 5 weeks, the results

came back with aspergillus.

> I do have bronchiectasis in one lung which is permanent.

***yes, I have some bronchiectasis and permanent scarring too***

My lung specialist says bronchiectasis and aspergillus are one in

the same for me. Do you get plugs? I haven’t had one in a year. No seemed

concerned when the mass improved and bronchiectasis appeared on my CAT Scan. I

didn’t know it was anything until I continually got sick and was sent to

see another lung specialist in Philadelphia.

***I'm a cougher and I'm always short of breath. I don't wheeze

often, but I do on occasion. I have lots of chest tightness and that

nasty thick mucous comes and goes. I see both doctors. I have an

asthma/allergy/immunology specialist I see at least once a month and

I have a pulmonologist I see every 3 months or so.***

I cough also, but can’t bring anything up.

Are you able to work? Do you have problems with your

sinuses?

***I've been disabled now for 2 years and can't work. I have other

problems besides my breathing, but the breathing is what keeps me

from working the most. Oh yes, sinus infections and I are old

friends!***

I have been released to go back to work with restrictions. My

company hasn’t agreed yet. I think I will get really sick when I go back,

but the doctor says I must try in order to convince them that this is a real

illness. It’s very well known in Europe.

Have you been tested?

> I had 4 sinus surgeries. It's been about 15 years.

***I've had several sinus surgeries as well. I have more room to

breathe in there, but I still battle with constant infection.***

You sound very much like me.

> Again, thanks for the reply. I don't want to become dependent on

steroids.

***I don't think anyone in their right mind wants to take steroids,

but they will keep you alive and breathing!***

Yes, I know… I know…. What dose are you on?

*****Good luck Barbara! I hope my answers helped you. At the very

least you know you aren't alone!*****

You have helped a lot!! Yes, it helps to know I am not alone. I

think doctors are just as confused. They make guesses. I just want to get well.

I have been out of work for 3 months. I stayed in air conditioning and when I

was tired, I was able to rest. Now I will be going back to a dirty environment

for 40 hours a week. I am trying to prepare myself…

Enjoy your weekend. Thanks again. I am sorry you are sick, but glad

to know someone else has something similar to me.

Barbara