my son & HRCT update

[Guest guest]

Hi All,

My first news is to brag on my son . He's

28 and works in film as a sound mixer. He worked on

a film after Katrina called Trouble the Water, about a

couple during and after the hurricane. (Some of it is

actual film videotaped by one of the survivors during

the storm.) Last night it took the Grand Jury Prize at

the Sundance Film Festival for documentary. He was

here at home visiting when we got the news, which

to us is very exciting!! I can't wait to see the film.

Also, we got the great news that, although he does

have GERD and a hiatal hernia, he does NOT have

Barrett's esophagus as we thought. That's such a

relief to me!

I got my HRCT report (from last week) in the mail

to take with me to San . I haven't talked with

the doc yet, and I know better than to read lab reports

alone, but nonetheless I've seen it and a few things

were new, some not:

-extensive fibrotic changes throughout the lungs

bilaterally, predominantly subpleural and predominant

in the lung bases; most severe in the inferior portions

of the lungs

-mild/borderline cardiomegaly (enlarged heart)

-mild dilation of the main pulmonary artery, which

may indicate pulmonary hypertension - that's new.

-scattered areas of stable, mild traction bronchiectasis

in lower lobes and right middle lobe

-no evidence of pericardial effusion or adenopathy

(swollen lymph glands)

-scattered areas of septal thickening and some

honeycombing in the lung bases

-two nodular opacities, which may represent areas of

fibrosis. Difference in size compared to former CTs

could be due to technique - one bigger, one smaller.

- " probable " subpleural calcified granuloma in left

lower lobe. One doc says " compatible with old

granulomatous disease " ; another says " may be

related to old empyema or hemothorax. " I had to

google those two, but now I'm wondering what

else I had at some point that nobody knew about!?

-differential perfusion between the 2 lungs is 46%

to left lung and 54% to right lung

The numbers from my 24-hr. urine test also came

back. I tested high for protein: normal is 30-150,

and mine was 156mg/24 hr. My creatinine clearance

was also high at 174mL/min, with normal between

88-128. That concerns me but maybe it shouldn't

too much in light of everything else. I'll find out more

later.

,

I'd love to be driving through the Central Highlands

of Tassie, but your travelogues are the next best

thing. Thanks so much for giving us such good

descriptions of your adventures. I've missed you -

Enjoy!!!!

Joyce,

You could be right on target with your self-diagnosis

although I hope not. I pray this will be the week for

some results from THOSE people that will improve

your quality of life! Long live the Queen!

Tina,

I'm very sorry you're feeling so lousy on the Tracleer.

Maybe it'll be like many meds and have only short-

term side effects. I know many people do pretty well

on it, and maybe you will too after a week or so.

It's great that Kaleb wants to go to church. Take care

and hang in there - as if you had a choice, right?

Sophie,

Migraines are awful, and I can't imagine having them

for a lifetime. I'm glad yours are less frequent and

painful now, at least. It's good to have you join us

but I'm sorry about the awful diagnosis that brings you

here. I was diagnosed in 2004 with IPF, but probably

had it for 3 years prior to that. If you've been reading

our posts, you already know that we care and will be

here for you. Welcome, and God bless you.

Sandie,

Severe pain and anxiety can effect blood pressure.

It is weird, but true. I found out about this when I

broke my femur in three places. What Bruce referred

to - people whose pressure goes up at the doctor's

office - is sometimes called " white coat fever " .

Zena,

Please keep us posted on your sob and what you

find out from the medicos. I remember when I had

to stop walking my sweet dog, and it hit me hard -

now someone else does it for me. That was another

loss brought on by this illness.

Hugs and blessings,

Gwynne 56 IPF 7/04 listed for transplant 3/07 Texas