Re: Update on

[Guest guest]

Hi Beth, I was DX in 2004 so I am pretty much in the same boat with . To my way of thinking what are they going to do for him at NJ, and a second opinion on what?? Then what ? I am of the opinion that I get more upset withthe "You look good. Your doing really well just keep up with what your doing. " WHY GO is my thought so I'm not." If there were something that could help me I would be there every week or go anywhere. This disease is so nasty that I don't want to give anymore of myself chasing it around. I am just going about my life doing what I want. at this point it is reading a lot, traveling as long as it's a short trip. I intend to go to Chattanooga in Oct. I do hope finds things to be thankful for every day. God Bless you both with strength to stand. Love and Prayers, Peggy IPF 2004, FloridaWorry looks around, Sorry looks back, Faith looks up. 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

[Guest guest]

I am glad he is going to National Jewish. They should have sent or are sending an itinary. Do you have an appointment? Do you know that dates? In the stuff they send you will be a list of motels which give a break to NJ patients and some of them have courtesy vans which if availabble will take you and pick you up. There is a cafeteria in NJ but I found the food horrible. It was eatable though. There is a hamburger joint just down the block with better food and a lot cheaper. Ask any personel to point the way. Is he in a wheel chair? That would be a lot easier on him. I found my days quite full when I was there. I have medicare and a medicare supplement and it paid fully for my visit. You, can, however call and ask about your insurance from the financial office. Usually they check your insurance before they make the appointment. I have no idea why you have gotten such bad service. I found their service to be extaordinary. Best of Luck. Joyce Rudy AZ birds

Update on

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 2009Tucson, Arizona

[Guest guest]

Beth/... I picked up on giving up because the gal at NJ seemed uninformed. DON'T do that.

[Guest guest]

Beth and ,

I'm so sorry that you are both going through this. Have you considred or has anyone mentioned the idea of just sending his biopsy slides to National Jewish for a second opinion?

I am one of those that would always get a second opinion when we're talking about this type of diagnosis. But I do understand the limits of energy, finances and will to take on a major trip like this. Though there should not be any difficulties with Medicare in seeking a second opinion.

The fact that his current physicians are encouraging him to get a second opinion tells me they understand the limits of their own expertise.

The evalutation he would get at NJ would be thorough and he would have a very clear picture of what is going on with his body and what can be done. It would be a no brainer for me but that's me. Everyone has to make their own decision.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sunday, July 5, 2009 1:18:50 PMSubject: Update on

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 2009Tucson, Arizona

[Guest guest]

Hi Beth for ,

Good luck at National Jewish. That hospital is accept assignment with

everything and everyone. Feel free to call them and ask about the second

opinion with Medicare etc. as they should be able to tell you. I believe they

have lodging there too so ask and if the person is unable to tell you, ask to

talk to their supervisor. It's not like you are complaining but you have urgent

needs and cannot just take a spontaneous trip without arranging for all of

's oxygen and transportation needs. They should have many of your tests

and whatnot arranged before you arrive but have the ability to move quickly and

arrange schedules to accommodate people from out of town if they need to

schedule some additional tests. They have wheel chairs and can assist if the

agenda is too tough for to manage. They will increase 's O2 as

they are used to people coming from all over the world and 2600 feet is much

better than coming from sea level.

Most of all relax, you'll be in good hands in an institution that brings in

people from all over the world. You'll find it quite lovely too.

Peggy E. (Denver area resident over 30 years, former N.J. patient until moving

to Seattle area in 2008)

>

> 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

>

[Guest guest]

Hi Beth, My name is Dyane and I'm 'up' in Phoenix. I was diagnosed in

2002 with Ideopathic Pulmonary Pneumonitis later changed to IPF. My

mother died from IPF but I have 3 brothers and 1 sister with absolutely

no problems. I also have no heart problems except the accelerated heart

beat 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 the

drugs that help us. I think women have less " trouble " with the fatigue

because we have always worked through it, I used to joke (while

raising 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 have

an expiration date tattooed on our kabooses (and mine is big enought Im

sure Id see it if it was there) so don't let the words end-stage get to

you. I was unconcious in ICU on a respirator when they did my

thoracotomy but I do have a 5 inch scare on my back between ribs and a

two inch scar where the drainage tube was. Your right that was the one

that bothered me most. Still is numb and itches at times to beat the

band. Unfortunately since they cut nerves there isnt much you can do.

Was your itnitial diagnosis at UMC? I ask because your going to NJ in

Denver. If I ever lose enough weight and get oked I would be going to

Tucson for a transplant (or so the gods at Humana said) By the way I

was only 46 when diagnosed and that was 7 1/2 years ago. I still work

everyday, own my own home etc. I have a mobility chair for when I have

to do more walking than just going to the office or the doctor and you

use much less o2 then and I know Medicare covers those. The problem is

then you have to pay to get the carrier for your car. Good luch and

stay as positive as you can. We all have bad days and everyone here is

sooooo wonderful and helpful. Walt keeps us laughing, Bruce is a library

of information, Beth is our nurse and Mama Sher is our momma! And

everyone else just know exactly what you mean and that is the most

wonderful 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 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

>