Re: Re: Update on (Beth)

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Hello My name is Walt

I read in your post that he was exposed to a couple kinds of chemical spills.. May I ask what? I worked in A chemical plant and some doc's think it was the exposures that has caused some of my lung problems but none want to commit to that.

Thank you

Walt on Whidbey IPF,Nsip.Uip. 06

Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.â€

Subject: Re: Update on To: Breathe-Support Date: Monday, July 6, 2009, 11:49 AM

Hi Beth, My name is Dyane and I'm 'up' in Phoenix. I was diagnosed in2002 with Ideopathic Pulmonary Pneumonitis later changed to IPF. Mymother died from IPF but I have 3 brothers and 1 sister with absolutelyno problems. I also have no heart problems except the accelerated heartbeat while active. I use 5 liters of o2 at work and 6-9 liters at home.Fatigue is with us always...some from the lack of o2 and some from thedrugs that help us. I think women have less "trouble" with the fatiguebecause we have always worked through it, I used to joke (whileraising 3 daughters) that moms were not allowed to get sick or tired. Cursed myself didnt I LOL. As they all say on this board we don't havean expiration date tattooed on our kabooses (and mine is big enought Imsure Id see it if it was there) so don't let the words end-stage get toyou. I was unconcious in ICU on a respirator when they did mythoracotomy but

I do have a 5 inch scare on my back between ribs and atwo inch scar where the drainage tube was. Your right that was the onethat bothered me most. Still is numb and itches at times to beat theband. Unfortunately since they cut nerves there isnt much you can do. Was your itnitial diagnosis at UMC? I ask because your going to NJ inDenver. If I ever lose enough weight and get oked I would be going toTucson for a transplant (or so the gods at Humana said) By the way Iwas only 46 when diagnosed and that was 7 1/2 years ago. I still workeveryday, own my own home etc. I have a mobility chair for when I haveto do more walking than just going to the office or the doctor and youuse much less o2 then and I know Medicare covers those. The problem isthen you have to pay to get the carrier for your car. Good luch andstay as positive as you can. We all have bad days and everyone here issooooo wonderful and helpful.

Walt keeps us laughing, Bruce is a libraryof information, Beth is our nurse and Mama Sher is our momma! Andeveryone else just know exactly what you mean and that is the mostwonderful thing of all.Dyane Pheonix IPF 02 and a host of other>> 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 itfor him. I wrote a message for him to this list some time ago, askingwhat people have found out from their biopsies. Thanks very much foryour replies.>> He is 68, dx with IPF in 2005. Last fall he got a lot more short ofbreath and fatigued, and they checked out

his heart completely beforedeciding it was bronchitis on top of the lung disease. This year he'sbeen struggling along, and had an open lung biopsy in May.>> The doctors said the biopsy showed he has "end stage" UIP, usualinterstitial pneumonitis, which they said is the same as IPF. Theyrecommended he go to National Jewish for a second opinion. It looks likewe will be going there in August, although he's going to need a wholelot of oxygen just to deal with that elevation.>> Here in Arizona at elevation 2600', he uses oxygen all night, andduring the day as needed. He can't do anything without his sats droppingvery low, very fast, so he often uses oxygen whenever he's not justsitting down. He got the pulse oximeter, thanks to you folks telling uswhere to get a good one.>> He's had a tough time post-biopsy. They made three large holes throughhis ribs. The drainage tube

into the chest cavity was SEWN INTO him, andit was huge, like maybe 5/8-inch ID. Two months later, he still has somepain around the ribs in the front under his right breast.>> is wondering if any of you could tell him whether there is anyproblem with Medicare or the supplemental insurance (he has BCBS) payingfor 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 whatthe daily schedule is like because he's concerned about fatigue. Cananyone give him an idea of this?>> Also, are there any meal arrangements for outpatients? Or good dealsat nearby motels? He said the Nat'l. Jewish person he's been makingarrangements with seems to be new on the job and doesn't know much, sohe 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 notself-inflicted. ..I never smoked!" I just wanted to comment that thepulmonologists we have seen said that PF does not look likesmoke-inflicted damage anyway (unlike COPD). They could tell thedifference by looking at the lung scans. did smoke for 20 years,though he quit 25 years ago. So I was really surprised when the doctorsaid smoking didn't do it. He was exposed to a couple kinds of chemicalspills when he was young, but now his sister (age 62) has been dx withIPF as well, so there's no telling what might have caused it in both ofthem. He has 6 other siblings who do not have it.>> Thank you for having this forum, has learned so much usefulinfo from it! The pulmonologists give us very little information.>> Beth for , 68, dx IPF 2005/UIP 2009> Tucson,

Arizona>