Re: Introduction, and Open Biopsy

[Guest guest]

Hello and Beth

I'm a fairly new person myself and live in Phoenix so we are neighbors.

Was in Tucson on Mothers Day--what a mess the freeway was!.

I was diagnosed in 02 after an acute attack of " we have no idea what is

killing you " I spent a week on a ventilator unconcious. During that

time they did a thoracotomy on me (I got the 5 inch scar instead of the

little ones) By the time I was concious I really didn't feel it. I was

stable for about 4 years and then started sliding. Last year my

diffusion rate dropped from 55% to 38%. I am on o2 24/7 and 6-8 liters

when active. Being extremely tired is something we all deal with. Use

your oxygen, you will feel better, Use it all the time. My

pulmo-dudette does not tell me how many liters to be on, only I know

how I feel, how breathless I am. Get an oxymeter, someone on this group

will get you the website, and track your saturation levels!

It sounds like you have had bad luck lung wise, between the orchard

chemicals and the AF I'm amazed it didn't rear its ugly head sooner. I

was exposed to asbestos as a child, cotton defoliant for 10 years in

Phoenix (lived 1 house from the end of the cotten field) , and my

mother died of IPF 6 years before I was diagnosed. So what " caused " my

IPF? Your guess is as good as mine.

I know how awful it is to be sooooo tired and in pain and just plain

frustrated. I'm a stubborn OB (That stands for Office B***h) and I

refuse to give in. I will be carried out kicking and screaming all the

way, believe you me.

You have to watch the ER xray guys, they will always diagnose pneumonia

even if you tell them you have IPF. I always warn them ever since I

scared some poor tech silly.

Hang in there, (and you too Beth) At least the " dry heat " is

good for our breathing LOL.

Dyane Phoenix IPF 02

>

> Hello, my wife (Beth, 55), joined me into this group a couple months

ago, in fact she is typing this for me. I'm nearly 68 years old and was

diagnosed with IPF " and a touch of emphysema " in 2005. After the

diagnosis I worked really hard on exercising, hiking 5 miles in the

moutnains and such. My pulmo at the time said I actually improved some,

which he rarely saw.

>

> I got a lot worse last fall, so exhausted, so much leg pain and

shortness of breath. I couldn't exercise any more. In April my

cardiologist told me to go to the ER. In there, they said I had

pneumonia. My pulmonologist said it was actually bronchitis in addition

to the IPF. (He said the ER doctors did an x-ray, saw " stuff " in my

lungs and figured it was pneumonia.) They had me on IV antibiotics for a

few days in the hospital and did all sorts of scans and tests.

>

> They did an angiogram of both sides of the heart, and found out my

heart is in great shape now (I had a bypass years ago and have been

taking loads of fish oil and other supplements). But my lungs are

getting worse.

>

> On May 7 they did an open lung biopsy on me, with three cuts, each

more than 1 1/2 inches long. I wanted the biopsy, to see if they could

find out more about exactly what this is in my lungs and maybe find a

more focused way to improve my quality of life (because I've hardly been

able to do a thing).

>

> I was in the ICU for 3 days and the ward 1 day. Now, a week later, I'm

starting to feel a little better but the whole process was brutal, with

that huge drain hose sewn into my side. The pain pills make me unable to

sleep, so I've gone back to ibuprofen plus benadryl to sleep.

>

> Now we're anxiously waiting to hear the results. And I'm wondering

what those of you who've had biopsies learned from them. I've heard that

lots of you had the biopsies, and yesterday some of you said you did get

valuable information from them. Can you tell me what they reported back

to you? I have no clue what kinds of things the pathology report could

show.

>

> After the surgery the thoracic surgeon told Beth that both my lungs

are very diseased. Later my pulmonologist told me that the surgeon had

told him that my lungs are " a mess. "

>

> I was exposed to some bad chemicals in my life. In the Air Force in

the 1960s, I worked in a Titan II Missile silo and one time we had a

missile fuel spill, extremely toxic fuel. I ran out of air in my

protective suit and I believe that some of the fumes got into it. It had

primitive check valves that, once the air in the suit is gone, can open.

>

> But I also used to work in the orchards in Pa. when I was young,

before they knew how bad chemicals like DDT were. We used to dump

chemical powder into drums and it would bounce back in my face and fill

the air. Also, our family's house was right on the edge of the apple and

cherry orchards, and the chemicals were always blowing around.

>

> My sister, age 62, found out last year that she has IPF, too. She

smoked cigarettes for many, many years. I smoked for about 20 years too,

but I quit in 1984, after I had a bout of high-altitude pulmonary edema.

Maybe both of us got the IPF from the orchard chemicals.

>

> My sister and I are both on oxygen now. She's on it 24 hours a day,

and I'm required to use it at night but I use it a lot of the time

during the day too, especially if I want to DO anything, like work

outside on the garden or yard.

>

> So this is my IPF story. I hope some of you wouldn't mind saying what

you learned from your biopsies. Thanks for having this support group. We

have learned a lot from it -- Beth has been giving me all kinds of

information.

>

> I heard about the clinical trials with new drugs at Jewish hospital in

Denver. Have any of you been able to get on those drugs, and if so, how

did you get into it? Did you have to go to Denver? Have you seen any

improvement?

>

> in Arizona

> IPF dx 2005

>