recently diagnosed with ILD

July 11, 2009

I just joined this site. I am having VAT biopsy 7/22. I work full time and was

wondering if I am diagnosed with IPF can I still work. It's office work, very

private cubicle, little talking, little walking. I love my job and really want

to keep working. Anyone out there able to do this? Also, I am unable to talk

with family husband included about what I'm going thru. My husband doesn't want

to until after the biopsy confirms diagnosis. I have friends I reached out to

and my kids have been helping around house (24,21,17- so they can do a lot). I

have SO MANY questions, but I will just start with the ability to work and how

to deal with husband in denial. Thanks for being there!

July 11, 2009

Hi teddyspenguins,

What's your name? Mine is Beth and I am the moderator of this group. I am 50 years old (as of next Wednesday) and I was diagnosed with an ILD (interstitial lung disease) 3 years ago. I'm glad that you have joined the group (but sorry you had reason to) and I hope you find some of the support that you are looking for.

As to your question about working... that really depends on you. If you have the energy and the desire to keep working there is no reason for you to stop. From the way you describe your job it sounds like you could handle without difficulty. I don't know whether or not the doctors will determine that you need oxygen but even if you do it's still possible to work. Leanne Storch is the Executive Director of the Pulmonary Fibrosis Foundation. She is also a patient with an ILD. She uses oxygen at the office and shows no signs of wanting to stop working. So it's definitely possible.

We have all dealt with family members and friends in denial. This is a huge adjustment for our loved ones to make. I was diagnosed 3 years ago and my brothers still don't get what's happening to me. They choose to igrore it for the most part. Will he read information about this subject? There is a handbook on the group homepage that can be downloaded and printed. Here's the link:

http://f1.grp.yahoofs.com/v1/EMVYSigEjFVFMu6z7WBuAkT7iWfE6WZwwLrnByqJ-ax5356xq88l2HZEbbWYbNGNva1fNbymv2pA-kU9pldsFQ/patient.pdf

It's going to take time for him to grasp this. As frightening as this is for us, it's scary for them also. It's easier and more comfortable sometimes for them to just pretend it's not happening. Since it's happening in our bodies we don't have that luxury. Others who are married will have better advice than me (I'm divorced). I would just keep bringing it up, leaving information around for him to read etc.

Again, welcome to the board. I'm sorry you had reason to look for us but since you did I'm glad you found us. Ask whatever questions occur to you. We've all had questions and continue to and we're here to help each other.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Saturday, July 11, 2009 12:59:36 PMSubject: recently diagnosed with ILD

I just joined this site. I am having VAT biopsy 7/22. I work full time and was wondering if I am diagnosed with IPF can I still work. It's office work, very private cubicle, little talking, little walking. I love my job and really want to keep working. Anyone out there able to do this? Also, I am unable to talk with family husband included about what I'm going thru. My husband doesn't want to until after the biopsy confirms diagnosis. I have friends I reached out to and my kids have been helping around house (24,21,17- so they can do a lot). I have SO MANY questions, but I will just start with the ability to work and how to deal with husband in denial. Thanks for being there!

July 11, 2009

My name is nne and I'm 55- up until now suffering from mild asthma which I

would LOVE to get back- thank you so much for answering my post. I met with the

surgeon who will do the biopsy and he was stunned I was still working and not on

oxygen already. I am taking prednisone 40mg. No change except I have all the

side effects, mood swings, insomnia, not weight gain but weight loss. Anyway

back to surgeon- I told him I have IPF and 3 years to live and I don't think he

appreciated my diagnosis. But he did say my PFT was very bad. I wish they could

do this sooner but every doctor in the free world seems to be on vacation in

July. Anyway, I'm rambling on - again thanks for your response.

>

> Hi teddyspenguins,

>

> What's your name? Mine is Beth and I am the moderator of this group. I am

50 years old (as of next Wednesday) and I was diagnosed with an ILD

(interstitial lung disease) 3 years ago. I'm glad that you have joined the

group (but sorry you had reason to) and I hope you find some of the support that

you are looking for.

>

> As to your question about working... that really depends on you. If you have

the energy and the desire to keep working there is no reason for you to stop.

From the way you describe your job it sounds like you could

handle without difficulty. I don't know whether or not the doctors will

determine that you need oxygen but even if you do it's still possible to work.

Leanne Storch is the Executive Director of the Pulmonary Fibrosis Foundation.

She is also a patient with an ILD. She uses oxygen at the office and shows no

signs of wanting to stop working. So it's definitely possible.

>

> We have all dealt with family members and friends in denial. This is a huge

adjustment for our loved ones to make. I was diagnosed 3 years ago and my

brothers still don't get what's happening to me. They choose to igrore it for

the most part. Will he read information about this subject? There is a handbook

on the group homepage that can be downloaded and printed. Here's the link:

>

http://f1.grp.yahoofs.com/v1/EMVYSigEjFVFMu6z7WBuAkT7iWfE6WZwwLrnByqJ-ax5356xq88\

l2HZEbbWYbNGNva1fNbymv2pA-kU9pldsFQ/patient.pdf

>

> It's going to take time for him to grasp this. As frightening as this is for

us, it's scary for them also. It's easier and more comfortable sometimes for

them to just pretend it's not happening. Since it's happening in our bodies we

don't have that luxury. Others who are married will have better advice than me

(I'm divorced). I would just keep bringing it up, leaving information around for

him to read etc.

>

> Again, welcome to the board. I'm sorry you had reason to look for us but since

you did I'm glad you found us. Ask whatever questions occur to you. We've all

had questions and continue to and we're here to help each other.

>

> Beth

> Moderator

> Fibrotic NSIP 06/06 Dermatomyositis 11/08

>

> ________________________________

>

> To: Breathe-Support

> Sent: Saturday, July 11, 2009 12:59:36 PM

> Subject: recently diagnosed with ILD

>

> I just joined this site. I am having VAT biopsy 7/22. I work full time and was

wondering if I am diagnosed with IPF can I still work. It's office work, very

private cubicle, little talking, little walking. I love my job and really want

to keep working. Anyone out there able to do this? Also, I am unable to talk

with family husband included about what I'm going thru. My husband doesn't want

to until after the biopsy confirms diagnosis. I have friends I reached out to

and my kids have been helping around house (24,21,17- so they can do a lot). I

have SO MANY questions, but I will just start with the ability to work and how

to deal with husband in denial. Thanks for being there!

>

July 11, 2009

nne,

Oh please, please, please don't make up your mind that you "have IPF and 3 years to live". The biopsy will give you a firm diagnosis but until then you don't know for sure what you have. Initially they thought I had IPF but I actually have NSIP related to a connective tissue disease. This has a much much better prognosis.

We have many many members who have lived much longer than 3 years with different forms of fibrosis. It's been three years since my diagnosis and I've been stable since then. We have members who are 3, 4, 5, 6 years and more from diagnosis.

There is no expiration date stamped on you. Let the doctors do their work, gather information, do research and then figure out what to do next.

Where are you located nne? Have you thought about getting an evaluation at a university medical center with an interstitial lung disease department? ILD's are fairly uncommon and most community based pulmonologists are not terribly knowledgable about them. It would be the best thing you can do for yourself.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Saturday, July 11, 2009 2:20:12 PMSubject: Re: recently diagnosed with ILD

My name is nne and I'm 55- up until now suffering from mild asthma which I would LOVE to get back- thank you so much for answering my post. I met with the surgeon who will do the biopsy and he was stunned I was still working and not on oxygen already. I am taking prednisone 40mg. No change except I have all the side effects, mood swings, insomnia, not weight gain but weight loss. Anyway back to surgeon- I told him I have IPF and 3 years to live and I don't think he appreciated my diagnosis. But he did say my PFT was very bad. I wish they could do this sooner but every doctor in the free world seems to be on vacation in July. Anyway, I'm rambling on - again thanks for your response.>> Hi teddyspenguins,>

> What's your name? Mine is Beth and I am the moderator of this group. I am 50 years old (as of next Wednesday) and I was diagnosed with an ILD (interstitial lung disease) 3 years ago. I'm glad that you have joined the group (but sorry you had reason to) and I hope you find some of the support that you are looking for.> > As to your question about working... that really depends on you. If you have the energy and the desire to keep working there is no reason for you to stop. From the way you describe your job it sounds like you could handle without difficulty. I don't know whether or not the doctors will determine that you need oxygen but even if you do it's still possible to work. Leanne Storch is the Executive Director of the Pulmonary Fibrosis Foundation. She is also a patient with an ILD. She uses oxygen at the office and shows no signs of wanting to stop

working. So it's definitely possible.> > We have all dealt with family members and friends in denial. This is a huge adjustment for our loved ones to make. I was diagnosed 3 years ago and my brothers still don't get what's happening to me. They choose to igrore it for the most part. Will he read information about this subject? There is a handbook on the group homepage that can be downloaded and printed. Here's the link:> > http://f1.grp. yahoofs.com/ v1/EMVYSigEjFVFM u6z7WBuAkT7iWfE6 WZwwLrnByqJ- ax5356xq88l2HZEb bWYbNGNva1fNbymv 2pA-kU9pldsFQ/ patient.pdf> > It's going to take time for him to grasp this. As frightening as this is for us, it's scary for them also. It's easier and more comfortable sometimes for them to

just pretend it's not happening. Since it's happening in our bodies we don't have that luxury. Others who are married will have better advice than me (I'm divorced). I would just keep bringing it up, leaving information around for him to read etc.> > Again, welcome to the board. I'm sorry you had reason to look for us but since you did I'm glad you found us. Ask whatever questions occur to you. We've all had questions and continue to and we're here to help each other.> > > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > > > ____________ _________ _________ __> From: teddyspenguins <teddyspenguins@ ...>> To: Breathe-Support@ yahoogroups. com> Sent: Saturday, July 11, 2009

12:59:36 PM> Subject: recently diagnosed with ILD> > > > > > I just joined this site. I am having VAT biopsy 7/22. I work full time and was wondering if I am diagnosed with IPF can I still work. It's office work, very private cubicle, little talking, little walking. I love my job and really want to keep working. Anyone out there able to do this? Also, I am unable to talk with family husband included about what I'm going thru. My husband doesn't want to until after the biopsy confirms diagnosis. I have friends I reached out to and my kids have been helping around house (24,21,17- so they can do a lot). I have SO MANY questions, but I will just start with the ability to work and how to deal with husband in denial. Thanks for being there!>

July 11, 2009

Hi nne,

I have been on o2 for almost 2 yrs, and I have worked 5 days a week the whole time. I am using a Helios at 2lts at this time. I work a Wal-mart on the phones and have had no trouble in that area.I have to work to keep insurance on myself and hubby. (husband) did not want to accept my dx when first told him, but he had just gotten out of hospt. with heart failure. Also right after, he had both legs removed below the knees because of diabetes. I know you have a rough road to travel, BUT God is good and you will come out of this a lot stronger person.So far, only one daughter out of 3 will accept how sick I am, but that's OK , sometimes I try to forget myself.I just take each day as it comes and thank God that I have another day to LIVE.

HP PF 6/05 60 TN

Subject: recently diagnosed with ILDTo: Breathe-Support Date: Saturday, July 11, 2009, 11:59 AM

I just joined this site. I am having VAT biopsy 7/22. I work full time and was wondering if I am diagnosed with IPF can I still work. It's office work, very private cubicle, little talking, little walking. I love my job and really want to keep working. Anyone out there able to do this? Also, I am unable to talk with family husband included about what I'm going thru. My husband doesn't want to until after the biopsy confirms diagnosis. I have friends I reached out to and my kids have been helping around house (24,21,17- so they can do a lot). I have SO MANY questions, but I will just start with the ability to work and how to deal with husband in denial. Thanks for being there!

July 11, 2009

nne/MB... let me jump in here and add I am past the 3 yr mark as well and I know Geeta is about 13 yrs out. I'm not sure if it's Mae , or maybe Ze? that has about 20 years. At least I think it's one of them...

nne, check out the date of dx (diagnosis) on each member's signature...easy to see how many of us 'live' with this disease.

In what State do you live?

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

recently diagnosed with ILD> > > > > > I just joined this site. I am having VAT biopsy 7/22. I work full time and was wondering if I am diagnosed with IPF can I still work. It's office work, very private cubicle, little talking, little walking. I love my job and really want to keep working. Anyone out there able to do this? Also, I am unable to talk with family husband included about what I'm going thru. My husband doesn't want to until after the biopsy confirms diagnosis. I have friends I reached out to and my kids have been helping around house (24,21,17- so they can do a lot). I have SO MANY questions, but I will just start with the ability to work and how to deal with husband in denial. Thanks for being there!>

July 11, 2009

A... just want to tell you again, I'm glad to see you back on the board.

By now I suppose you and have settled into a routine.

It's a big job taking care of the two of you and working too.

Hugs.

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

recently diagnosed with ILDTo: Breathe-Support Date: Saturday, July 11, 2009, 11:59 AM

I just joined this site. I am having VAT biopsy 7/22. I work full time and was wondering if I am diagnosed with IPF can I still work. It's office work, very private cubicle, little talking, little walking. I love my job and really want to keep working. Anyone out there able to do this? Also, I am unable to talk with family husband included about what I'm going thru. My husband doesn't want to until after the biopsy confirms diagnosis. I have friends I reached out to and my kids have been helping around house (24,21,17- so they can do a lot). I have SO MANY questions, but I will just start with the ability to work and how to deal with husband in denial. Thanks for being there!

July 11, 2009

Hi there,

I'm an accountant, dx 2002 with IPF, I work 40 hours a week. I have a 5

liter concentrator at work and a 10 ltr concentrator at home and use

portable tanks to get to and from work. I have a fifty foot cord and go

everywhere except up the stairs. I have a wonderful front desk person

who runs things upstairs for me. Yes I get tired by Friday but I have a

great employer who has no problem with all my doctors visits. I don't

know what to tell you about your husband except don't be mad. He's

scared and we all know what that can do to a man. I lost my dear

husband last year and I would give anything to have him back. I was the

one in denial about his disease.

Glad to have you, sorry you need us. Listen to all, Walt keeps us

laughing, Bruce has info at his fingertips, Beth is our nurse and

everyone else has so much to tell.

Dyane Phx AZ IPF 02

>

> I just joined this site. I am having VAT biopsy 7/22. I work full time

and was wondering if I am diagnosed with IPF can I still work. It's

office work, very private cubicle, little talking, little walking. I

love my job and really want to keep working. Anyone out there able to do

this? Also, I am unable to talk with family husband included about what

I'm going thru. My husband doesn't want to until after the biopsy

confirms diagnosis. I have friends I reached out to and my kids have

been helping around house (24,21,17- so they can do a lot). I have SO

MANY questions, but I will just start with the ability to work and how

to deal with husband in denial. Thanks for being there!

>

July 11, 2009

Work is one more of those many questions where there is no universal

answer. It depends on the specific ILD and your stage within it.

Personal factors also figure in.

I couldn't work if I had to. My appearance at lunch or in short periods

of gathering would seem to contradict that. However, some days are

better than others. Many days I have to use as recovery days. For

instance, one doctor's appointment in a day pretty well is my limit and

if I have two, I'll not do much if anything the day after. If I'm up and

active just a few hours, I'll need to rest and perhaps even nap. Getting

up early and getting ready would be nearly impossible. Getting showered,

shaved, and dressed is enough to require a rest and takes three times

the time it once did.

I've observed that generally the medicare guidelines on FVC and FEV1 are

pretty reasonable and if you're below those you'd probably find work

difficult if not impossible. My FVC is 36% so thats a good indication of

the remaining lung function I have.

Now, that is my attempt at giving a different persons situation on " can

one work. " But, I want to add the issue of given the choice, would I

work. Understand, this is just me and my situation. With a life

expectancy of around three years (and while there are no expiration

stamps on our butts, my diagnosis is very specific and the odds of

living more than five years in my specific case are somewhere in the

range of 1 to 3%), I am glad I don't have to and/or can't work. I worked

all my life, averaging 65 hours a week most of the time and never taking

time off or vacations. Thats not how I'd want to spend my limited time

now. First, I dedicate all the energy I have to taking care of myself so

that I live as healthy a life and as long as possible. Second, I want

time with family and friends that wouldn't be possible if working. This

is my retirement. It's the only one and only way I can have it. I'm

compacting the next 20-25 years that I won't get into the 2-5 years I

will. I'm being selfish and thinking of myself for the first time in my

life. Third, the work environment involves regular exposure to germs

which with a depressed system can be dangerous and even deadly and

without working is much better minimized.

One other factor is other conditions and doctors. I saw 17 doctors last

year. The month of August was my worst doctor month with 12 appointments

which was actually down from 19 the previous August. My total for the

year, including my mental health counselor who is the most important of

all, was over 75 appointments. This year it will be just over 50 based

on my current projections. Some of these are routine, some are for med

reevaluations (none of the meds for PF), some are referrals based on lab

findings. Last time I checked I had just under 20 total conditions,

diseases, or areas of medical concern. Taking care of those others is

key to getting as many miles as I can out of these lungs. Many here have

benefitted greatly from respiratory rehab and that wouldn't be possible

while working. I do benefit from my exercise program established through

rehab. I know it seems contradictory to talk about exercise and

inability to work at the same time. Well, there's a lot of difference in

getting on a treadmill rested for 30 minutes with your oxygen turned way

up and then sitting or laying down after versus going to and coming from

a job where you're active and trying to function for eight hours.

So, my life is as good as it can be with PF today but if I was working

it wouldn't be like this. I've avoided complications and colds and flus

so far. I am able to live at the pace I'm capable of. I don't come close

to the income I was use to. However, in my condition, and I'm only

saying mine, I'm not capable of working, nor is that how i'd want to be

using my remaining bank of energy, limited as it is.

> >

> > I just joined this site. I am having VAT biopsy 7/22. I work full

time

> and was wondering if I am diagnosed with IPF can I still work. It's

> office work, very private cubicle, little talking, little walking. I

> love my job and really want to keep working. Anyone out there able to

do

> this? Also, I am unable to talk with family husband included about

what

> I'm going thru. My husband doesn't want to until after the biopsy

> confirms diagnosis. I have friends I reached out to and my kids have

> been helping around house (24,21,17- so they can do a lot). I have SO

> MANY questions, but I will just start with the ability to work and how

> to deal with husband in denial. Thanks for being there!

> >

>

July 11, 2009

nne,

I was mis-diagnosed at 9 years old with exercise induced asthma. It wasn't until

Jan.2006 that I recieved a confirmed diagnosis of IPF Open Lung Biopsy. I'm now

33 and 3 1/2 years out from my diagnosis. I'm not dead yet and looks like I'm

not going any where soon. I've had symptoms of this disease for as long as I can

remember.

My diagnosis did not bring with it an experation date. For me it gave my disease

a name. I have a husband of 15 years and a 12 year old son. My IPF diagnosis

gave me clearer focus. There's no point in marking your calender yet. There are

plenty great times ahead of you and your family. This is just another bump in

the road we IPFer's learn to navigate.

Your husband is right to wait for the outcome of your VATS before giving into

the fear. He's likely trying to stay strong for you. It's very easy for us

patients in the begining to get angry, scared, and feel very alone. Try to keep

in mind that this is also happening to the people who love you.

I wish you and your family the best and welcome to the board.

33 FL

IPF dx 1/06