Re: Want to say hello as I am new here

[Guest guest]

Ann,

I'm IPF too, still working, but expect my doctors to want me to on oxygen shortly. Since I work in a steel mill, that will be the end of my working days. I plan to apply for SS disability then, and my doctors all say that it should be no problem getting it. I hope so, for what they charge. They haven't discussed Predisone with me as yet, but from what I've heard about it, I'll refuse. Doesn't seem to be any benefit at all, has terrible side effects, and is hard to get off of.

I'm 61, male, married, retired USN, steel mill worker, father, grandfather,.......

Best of luck,.....ARLEN (sarleno@...)

[Guest guest]

I had good luck with my SSI. Retired Aug 04 (56 yrs old) when I went on O2 24/7. Applied the day I left Hospital. Got approved in 3 months. The first check doesn't start till 5 months after disability so got it in Feb of 05. I wrote two long letters for them. One on what my job was and why I couldn't do it now. The other on how bad I was doing the daily chores like having to sit on a stool to unload the dishwasher, rest every two steps carrying up the wash. All these thing help to let some office worker where ever they are understand how bad I was. Also on the forms they wanted I typed Long answers rather than the yes and No's P. (Yes I do the wash for my Wife)happyyellowroses wrote: Hi, I am new here and just want to say hello to all. I have IPF since Aug 2003 (At this time they put me on a vent. and told me I was going to die. I was in Critical Care for 3 weeks with 2 lung bios. First showed Organized pneumonia and the second acute pneumonia) After a month in the hospital I went home on constant oxygen 2L. 5 months later I returned to work only walking with oxygen. Doctor told me they believed it was auto immune and put me on Cytoxan as well as Predisone 10 mg. daily. I have tried to wein off Predisone, but I get sick each time I do. I worked until Dec. 2005 and shortness of breath became too difficult while working 8 hrs. without oxygen. I am now on 4 L oxygen walking or movment and 3 L resting and

sleeping. I have applied for Social Security Disability and was wondering if anyone here has done so and if they had good results. I am 58 yrs. old, a widow of 7 years after 27 years of marriage. I am looking forward to sharing and visiting with other than walk in the same shoes as I. Thanks, Ann

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[Guest guest]

Hy and Ann

Here's what I'm gonna do -

The Social Security people don't just approve or disapprove

people -they use a book. Somewhere up above the guy who slaps the

rubberstamp onto the paper is someone who's written the book. So

what I'm gonna do is write my congresspeople and see if they can't

get me a copy of the 'audit guide' or whatever it is they're using.

I'd be nice to know for me and the others at our site. My suspicion

is that it's based largely on doc test reports and perscriptions.

My local SS office said they send the application to the state and

it's the same state people who determine eligibility for state

disability who the SSAdministration uses. Which doesn't sound right

to me but it might be so.

I'm not at all that badly off. The only thing I know is that IPF

is a progressive disease and I wanted to get into the system as soon

as possible.

But someone is responsible for approving our applications and

they have to have some standards for doing so. Me? I suspect it's

test results mostly and I want to find out the numbers. If it does

turn out that some state agency is responsible for doing the judging

then not only would that be good to know in itself but it'd also be

good to know for others in our situation.

So can I ask you guys, especially those still working their way

through the system, to find out as best you can how you're being

judged and keep records and all like that? Then we can get together

to try to see to it that everyone gets a fair shake.

Thanks, Owen

Hi, I am new

here and just want to say hello to all. I have IPF since Aug 2003

(At this time they put me on a vent. and told me I was going to

die. I was in Critical Care for 3 weeks with 2 lung bios. First

showed Organized pneumonia and the second acute pneumonia) After a

month in the hospital I went home on constant oxygen 2L. 5 months

later I returned to work only walking with oxygen. Doctor told me

they believed it was auto immune and put me on Cytoxan as well as

Predisone 10 mg. daily. I have tried to wein off Predisone, but I

get sick each time I do.

> I worked until Dec. 2005 and shortness of breath became too

difficult while working 8 hrs. without oxygen. I am now on 4 L

oxygen walking or movment and 3 L resting and sleeping. I have

applied for Social Security Disability and was wondering if anyone

here has done so and if they had good results. I am 58 yrs. old, a

widow of 7 years after 27 years of marriage.

> I am looking forward to sharing and visiting with other than

walk in the same shoes as I.

> Thanks,

> Ann

>

>

>

[Guest guest]

Hi Ann-I am a 56 year old woman who was diagnosed

a year ago with Hypersensitivity pneumonitis. I had

to quit teaching after 34 years. I was first

diagnosed with IPF and then found out I have HP which

is very rare. I am also on 4L of oxygen when walking

and 2L when sitting. I applied for SS and had no

difficulty in receiving it. I did have to go through

the waiting period. Now I am hoping to receive

medicare-have to be disabled for 2 years to get it

from what I understand. I recently went to Arizona

and was able to walk around without using my oxyen

although my heart rate was up to 112 at times. The

doctors don't seem to be concerned about my rapid

heart rate. I am on prednisone (was on 20mg. for

almost a year and talked my doctor into letting me go

down to 10mg.), azathrioprine, and acytlecysteine.

All strong drugs!! Hope you want to communicate with

me as it gets depressing at times. No one can know

what you go through on a daily basis being hooked up

to these oxygen tubes, etc. except someone who is also

experiencing it. Lately I've become very depressed so

talking to someone like you would be very helpful.

Have a great day! Ronnie

--- happyyellowroses

wrote:

>

> [] Hi, I am new here and just want to say hello

> to all. I have IPF

> since Aug 2003 (At this time they put me on a vent.

> and told me I was

> going to die. I was in Critical Care for 3 weeks

> with 2 lung bios.

> First showed Organized pneumonia and the second

> acute pneumonia) After

> a month in the hospital I went home on constant

> oxygen 2L. 5 months

> later I returned to work only walking with oxygen.

> Doctor told me they

> believed it was auto immune and put me on Cytoxan as

> well as Predisone

> 10 mg. daily. I have tried to wein off Predisone,

> but I get sick each

> time I do.

>

> I worked until Dec. 2005 and shortness of breath

> became too difficult

> while working 8 hrs. without oxygen. I am now on 4

> L oxygen walking or

> movment and 3 L resting and sleeping. I have

> applied for Social

> Security Disability and was wondering if anyone here

> has done so and if

> they had good results. I am 58 yrs. old, a widow of

> 7 years after 27

> years of marriage.

>

> I am looking forward to sharing and visiting with

> other than walk in the

> same shoes as I.

>

> Thanks,

>

> Ann

>

>

__________________________________________________

[Guest guest]

Hi, I am new here and just want to say hello to all. I have IPF since Aug 2003 (At this time they put me on a vent. and told me I was going to die. I was in Critical Care for 3 weeks with 2 lung bios. First showed Organized pneumonia and the second acute pneumonia) After a month in the hospital I went home on constant oxygen 2L. 5 months later I returned to work only walking with oxygen. Doctor told me they believed it was auto immune and put me on Cytoxan as well as Predisone 10 mg. daily. I have tried to wein off Predisone, but I get sick each time I do.

I worked until Dec. 2005 and shortness of breath became too difficult while working 8 hrs. without oxygen. I am now on 4 L oxygen walking or movment and 3 L resting and sleeping. I have applied for Social Security Disability and was wondering if anyone here has done so and if they had good results. I am 58 yrs. old, a widow of 7 years after 27 years of marriage.

I am looking forward to sharing and visiting with other than walk in the same shoes as I.

Thanks,

Ann

Welcome to the group. Sounds like my story. Only I went home with all the 02 equiptment, juust did not need it....or did not believe I did. I soon found out different. I am on 2-3 L of 02 sitting, walking, or sleeping. I am 53 yo, became a widow this last July 4th, after 30 years of marriage. I applied for Social Security widows benefits and disability. My Pulmonary Dr. stated that I could no longer work and that my condition was terminal, and it was all documented. All that info went to the Social Security Administration and a positive decision was made in my favor. I take a gram of cytoxin every month. I have done so since September. Saw my Rheumatologist today and she wants to go with the cytoxin for 1 year...six more months, and see where we are at that time. She says I am no worse, and the good days certainly out weigh the bad ones. I will do a PFT and have a CT scan next week to compare results. This group has been a cool drink in my desert. The empathy and compassion shared here is refreshing, besides encouraging. Here, hope abounds continually. God bless you and I have added you to my prayer list. kiss kiss

~Ginger~

[Guest guest]

Yes, Ann,

I am on SS Disability. Had to go through a lawyer. Took about a year!

Keep your chin up and stay strong. I just keep on ticking!

Hugs,

Joyce>> > [] Hi, I am new here and just want to say hello to all. I have IPF> since Aug 2003 (At this time they put me on a vent. and told me I was> going to die. I was in Critical Care for 3 weeks with 2 lung bios. > First showed Organized pneumonia and the second acute pneumonia) After> a month in the hospital I went home on constant oxygen 2L. 5 months> later I returned to work only walking with oxygen. Doctor told me they> believed it was auto immune and put me on Cytoxan as well as Predisone> 10 mg. daily. I have tried to wein off Predisone, but I get sick each> time I do.> > I worked until Dec. 2005 and shortness of breath became too difficult> while working 8 hrs. without oxygen. I am now on 4 L oxygen walking or> movment and 3 L resting and sleeping. I have applied for Social> Security Disability and was wondering if anyone here has done so and if> they had good results. I am 58 yrs. old, a widow of 7 years after 27> years of marriage.> > I am looking forward to sharing and visiting with other than walk in the> same shoes as I.> > Thanks,> > Ann>

[Guest guest]

,

I will encourage my husband to read this post. It is possible to do the wash with PF (and the male chromosome)!

Carman

-------------- Original message -------------- I had good luck with my SSI. Retired Aug 04 (56 yrs old) when I went on O2 24/7. Applied the day I left Hospital. Got approved in 3 months. The first check doesn't start till 5 months after disability so got it in Feb of 05. I wrote two long letters for them. One on what my job was and why I couldn't do it now. The other on how bad I was doing the daily chores like having to sit on a stool to unload the dishwasher, rest every two steps carrying up the wash. All these thing help to let some office worker where ever they are understand how bad I was. Also on the forms they wanted I typed Long answers rather than the yes and No's P. (Yes I do the wash for my Wife)happyyellowroses wrote:

Hi, I am new here and just want to say hello to all. I have IPF since Aug 2003 (At this time they put me on a vent. and told me I was going to die. I was in Critical Care for 3 weeks with 2 lung bios. First showed Organized pneumonia and the second acute pneumonia) After a month in the hospital I went home on constant oxygen 2L. 5 months later I returned to work only walking with oxygen. Doctor told me they believed it was auto immune and put me on Cytoxan as well as Predisone 10 mg. daily. I have tried to wein off Predisone, but I get sick each time I do.

I worked until Dec. 2005 and shortness of breath became too difficult while working 8 hrs. without oxygen. I am now on 4 L oxygen walking or movment and 3 L resting and sleeping. I have applied for Social Security Disability and was wondering if anyone here has done so and if they had good results. I am 58 yrs. old, a widow of 7 years after 27 years of marriage.

I am looking forward to sharing and visiting with other than walk in the same shoes as I.

Thanks,

Ann

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[Guest guest]

,

Men are never more attractive than when they are helping with the housework.

Joyce Hi, I am new here and just want to say hello to all. I have IPF since Aug 2003 (At this time they put me on a vent. and told me I was going to die. I was in Critical Care for 3 weeks with 2 lung bios. First showed Organized pneumonia and the second acute pneumonia) After a month in the hospital I went home on constant oxygen 2L. 5 months later I returned to work only walking with oxygen. Doctor told me they believed it was auto immune and put me on Cytoxan as well as Predisone 10 mg. daily. I have tried to wein off Predisone, but I get sick each time I do. > I worked until Dec. 2005 and shortness of breath became too difficult while working 8 hrs. without oxygen. I am now on 4 L oxygen walking or movment and 3 L resting and sleeping. I have applied for Social Security Disability and was wondering if anyone here has done so and if they had good results. I am 58 yrs. old, a widow of 7 years after 27 years of marriage. > I am looking forward to sharing and visiting with other than walk in the same shoes as I.> Thanks,> Ann> > >

[Guest guest]

Ronnie,

I wonder why doctors are unconcerned about rapid heartbeat. Mine is always 100 or so just sitting. When I walk uphill it just feels like it is coming out my neck. Perhaps it is just what happens with lung disease and they see it all the time. ??

Try to overcome the depression. It is so hard some days....especially cloudy days....but every day is a gift from God. There are good days to come. I have had so many good things happen since my diagnosis...4 more grandkids... ....lots of good times with friends and family.

Glad you are here. You are among caring people.

Hugs,

Joyce> > > > > [] Hi, I am new here and just want to say hello> > to all. I have IPF> > since Aug 2003 (At this time they put me on a vent.> > and told me I was> > going to die. I was in Critical Care for 3 weeks> > with 2 lung bios. > > First showed Organized pneumonia and the second> > acute pneumonia) After> > a month in the hospital I went home on constant> > oxygen 2L. 5 months> > later I returned to work only walking with oxygen. > > Doctor told me they> > believed it was auto immune and put me on Cytoxan as> > well as Predisone> > 10 mg. daily. I have tried to wein off Predisone,> > but I get sick each> > time I do.> > > > I worked until Dec. 2005 and shortness of breath> > became too difficult> > while working 8 hrs. without oxygen. I am now on 4> > L oxygen walking or> > movment and 3 L resting and sleeping. I have> > applied for Social> > Security Disability and was wondering if anyone here> > has done so and if> > they had good results. I am 58 yrs. old, a widow of> > 7 years after 27> > years of marriage.> > > > I am looking forward to sharing and visiting with> > other than walk in the> > same shoes as I.> > > > Thanks,> > > > Ann> > > > > > > __________________________________________________>

[Guest guest]

Ginger

You amaze me because of the trials you have endured in a short time. I get inspired every time you post.

Take care

Joyce >> > > > Hi, I am new here and just want to say hello to all. I have IPF since Aug > 2003 (At this time they put me on a vent. and told me I was going to die. I > was in Critical Care for 3 weeks with 2 lung bios. First showed Organized > pneumonia and the second acute pneumonia) After a month in the hospital I > went home on constant oxygen 2L. 5 months later I returned to work only > walking with oxygen. Doctor told me they believed it was auto immune and put me > on Cytoxan as well as Predisone 10 mg. daily. I have tried to wein off > Predisone, but I get sick each time I do. > I worked until Dec. 2005 and shortness of breath became too difficult while > working 8 hrs. without oxygen. I am now on 4 L oxygen walking or movment and > 3 L resting and sleeping. I have applied for Social Security Disability > and was wondering if anyone here has done so and if they had good results. I > am 58 yrs. old, a widow of 7 years after 27 years of marriage. > I am looking forward to sharing and visiting with other than walk in the > same shoes as I. > Thanks, > Ann> > > Welcome to the group. Sounds like my story. Only I went home with all > the 02 equiptment, juust did not need it....or did not believe I did. I soon > found out different. I am on 2-3 L of 02 sitting, walking, or sleeping. I am > 53 yo, became a widow this last July 4th, after 30 years of marriage. I > applied for Social Security widows benefits and disability. My Pulmonary Dr. stated > that I could no longer work and that my condition was terminal, and it was > all documented. All that info went to the Social Security Administration and a > positive decision was made in my favor. I take a gram of cytoxin every > month. I have done so since September. Saw my Rheumatologist today and she wants > to go with the cytoxin for 1 year...six more months, and see where we are at > that time. She says I am no worse, and the good days certainly out weigh the > bad ones. I will do a PFT and have a CT scan next week to compare results. > This group has been a cool drink in my desert. The empathy and compassion shared > here is refreshing, besides encouraging. Here, hope abounds continually. God > bless you and I have added you to my prayer list. kiss kiss> ~Ginger~>

[Guest guest]

Welcome Ann. My husband's PF started as Organizing Pnuemonia. That was 4 1/2 years ago. He is still working. There is hope.

Carman

-------------- Original message --------------

Hi, I am new here and just want to say hello to all. I have IPF since Aug 2003 (At this time they put me on a vent. and told me I was going to die. I was in Critical Care for 3 weeks with 2 lung bios. First showed Organized pneumonia and the second acute pneumonia) After a month in the hospital I went home on constant oxygen 2L. 5 months later I returned to work only walking with oxygen. Doctor told me they believed it was auto immune and put me on Cytoxan as well as Predisone 10 mg. daily. I have tried to wein off Predisone, but I get sick each time I do.

I worked until Dec. 2005 and shortness of breath became too difficult while working 8 hrs. without oxygen. I am now on 4 L oxygen walking or movment and 3 L resting and sleeping. I have applied for Social Security Disability and was wondering if anyone here has done so and if they had good results. I am 58 yrs. old, a widow of 7 years after 27 years of marriage.

I am looking forward to sharing and visiting with other than walk in the same shoes as I.

Thanks,

Ann