Re: introducing myself / lung bleeds and fumes

[Guest guest]

Hi ,

I know how scary that first-time big bleed can be! My son had his

first major episode when he was 17 years old. It rattled all of us

because he'd just seen his CF doctor 4 days before and was in perfect

health! He'd recently gained 7 pounds, his PFTs were at their best --

everything was perfect then... pop! One night he started coughing

blood... I walked into the bathroom and it looked like a crime scene

-- blood spattering the sink, mirror and the front of his shirt.

His regular CF doctor was gone for the weekend, so the doctor

on call (our asthma/allergy doctor) assumed the bleed was due to

infection, so she hospitalized him and started IV antibiotics. This

was the second time in his life he's had IVs.

Intuitively I didn't believe it was due to infection because there

were no signs or symptoms -- as I said, his health was perfect. When

his doctor came back from his weekend breaks he was stunned and VERY

upset to find his star patient hospitalized. Finally all the the

cultures came back which proved the bleed couldn't be

infection-related, but they didn't want to stop IVs mid-course.

Just shy of one month later, the bleed happened again. Same scenario:

he'd just seen his doctor 4 days before and was in perfect health! I

joked with the doctor that I'd learned consistencies with the two

episdoes: both times he'd seen the doctor 4 days prior, both times the

moon was full and it was a Friday night, and both times he was with

the same two best friends and they were getting ready to watch a

rented horror movie.

Not very scientific, is it? The following month when the moon was

full, we joked that maybe he shouldn't rent a horror movie with his

two best friends!

Anyway, with the help of two wonderful men on the Cystic-L, I was able

to trace the source of the bleeding. My son was on a photographer on

the high school journalism staff. He was spending huge chunks of time

in the darkroom around all those chemicals. One of the men on the

Cystic-L suggested it was the chemicals because his ex-wife was a

photographer and he knew how harsh the chemicals were. The other man

shared his personal experience with paint fumes and lung bleeds, and

he sent me the OSHA papers on photography chemicals.

The following summer, my son experienced minor bleeding after painting

his bedroom -- even though we took great care to open all windows

and run fans to ventilate the house.

So, you might want to look around the home. Have you recently painted

rooms or painted or stained furniture? What about at school -- any

painting or chemicals in the classroom? What about new carpets or

furniture made with particle board -- the smell from these two

aggravate my lungs badly!

Because of my son's episodes in the darkroom, when it was time for him

to take his chemistry class, I had it written into his school health

plan that the door to the classroom would remain open at all times and

that his lab station would be the one closest to the door to enhance

ventilation.

Additionally, the darkroom thing worked out because he got to stay on

staff as a photographer, but he wasn't allowed in the darkroom to

develop photographs. The teacher hated that because he said was

his best developer, but we felt this was best for his health. The only

way to get around this rule would be for to wear an

OSHA-approved ventilated mask, and he didn't want to do that. So,

while editors continued giving photo assignments -- and

was still listed as a student in the class and getting a grade for

the class, he didn't have to go to class anymore, which allowed him to

pick up another art class (sculpture) that he'd been wanting to take

but was never able to fit into his schedule.

Now... ask me if I'm happy that 's college major is photography?

Kim

Mom to (23 with CF and asthma) and (20 asthma, no CF)