Update on

[Guest guest]

Hi folks, I'm the one who joined the list even though my husband is the

patient, because he won't touch the computer and I do it for him. I wrote a

message for him to this list some time ago, asking what people have found out

from their biopsies. Thanks very much for your replies.

He is 68, dx with IPF in 2005. Last fall he got a lot more short of breath and

fatigued, and they checked out his heart completely before deciding it was

bronchitis on top of the lung disease. This year he's been struggling along, and

had an open lung biopsy in May.

The doctors said the biopsy showed he has " end stage " UIP, usual interstitial

pneumonitis, which they said is the same as IPF. They recommended he go to

National Jewish for a second opinion. It looks like we will be going there in

August, although he's going to need a whole lot of oxygen just to deal with that

elevation.

Here in Arizona at elevation 2600', he uses oxygen all night, and during the day

as needed. He can't do anything without his sats dropping very low, very fast,

so he often uses oxygen whenever he's not just sitting down. He got the pulse

oximeter, thanks to you folks telling us where to get a good one.

He's had a tough time post-biopsy. They made three large holes through his ribs.

The drainage tube into the chest cavity was SEWN INTO him, and it was huge, like

maybe 5/8-inch ID. Two months later, he still has some pain around the ribs in

the front under his right breast.

is wondering if any of you could tell him whether there is any problem

with Medicare or the supplemental insurance (he has BCBS) paying for the second

opinion and additional tests we expect at Natl. Jewish. We have limited income

and it's a huge concern.

We are going to be at Natl. Jewish for 5 days, and he's wondering what the daily

schedule is like because he's concerned about fatigue. Can anyone give him an

idea of this?

Also, are there any meal arrangements for outpatients? Or good deals at nearby

motels? He said the Nat'l. Jewish person he's been making arrangements with

seems to be new on the job and doesn't know much, so he has given up on asking

her much of anything since she has no answers.

BTW, I saw these words in someone's sig line: " No, NSIP was not

self-inflicted...I never smoked! " I just wanted to comment that the

pulmonologists we have seen said that PF does not look like smoke-inflicted

damage anyway (unlike COPD). They could tell the difference by looking at the

lung scans. did smoke for 20 years, though he quit 25 years ago. So I

was really surprised when the doctor said smoking didn't do it. He was exposed

to a couple kinds of chemical spills when he was young, but now his sister (age

62) has been dx with IPF as well, so there's no telling what might have caused

it in both of them. He has 6 other siblings who do not have it.

Thank you for having this forum, has learned so much useful info from

it! The pulmonologists give us very little information.

Beth for , 68, dx IPF 2005/UIP 2009

Tucson, Arizona