Re: my son & HRCT update - Gwynne

[Guest guest]

CONGRATULATIONS CHRISTOPHER! How very exciting and I know your

thrilled I can hear it in your post!

Dont let the news the lab results startle you, I do that all that

time and I just have to not do that to myself. Your in my thoughts

and I am praying for the very best at the docs!

I know stress and pain and anxiety can cause both. I checked with

the doc it isnt anxiety. Pain well that wont ever go away and stress

is less then it ever was. I am going to do the 24 PH monitoring for

the GERD because I still think something is going on there. I am

calling him today.

Take care of you!

Sandie

>

> 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

>