Re: Disability Benefits For UIP

November 15, 2009

Dave,

Please don't give up before you begin. I applied for SSDI in August of 06. I had stopped working in May and it took that time for me to come to grips with the fact that was no longer capable of working full time. Like you I had a job I loathed and did not want to spend whatever time I had struggling to maintain a job I didn't like, care about and due to fatigue and memory problems, wasn't even particularly good at any longer.

You are correct in that the requirements for chronic pulmonary insufficiency are somewhat stringent. I didn't meet those requirements when I was approved. There are other factors they take into considersation, your overall health other than your lung issues, the medications you are on, your suceptibility to infection and complications, your life expectancy, oxygen dependance etc. The difficulty of getting approved varies from state to state. I was approved in February of 07 and received payments back to November of 06.

In my experience and from other's experience that I'm aware of the two most important things to do are present them with copies of all your medical records. CT scan reports, bloodwork reports, pft results etc etc. Bury them with information. The more you provide to them, the less they will have to ask and the faster your claim will be processed. The other thing is even more important in my opinion. Discuss this issue with your pulmonologist. It is essential that your doctor supports your application. Social Security puts great weight on his/her opinion of whether or not you can work.

Finally if your application is denied the first time, appeal, appeal, appeal. Some get attorneys to help at that point, others have involved their congressperson. Don't give up!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sun, November 15, 2009 8:35:15 PMSubject: Disability Benefits For UIP

Now that the pathologist came back with UIP after my VATS I am now even more nervous and upset then before. Waiting to seew my Dr. on Wed. for full results.I have been out of work alot over this past year because of tests, doctors appointments, VATS operation, and alot of time because I just dont feel well.I was looking at the Social Security/Disability website and quite surprised the PF and all are other diseases were not listed under the impairments section. What I gathered from the site is that you have to have a "Chronic pulmonary insufficiency" with a very low score in either your FCV, FCV1, or DCLO. What if your do not meet these scores, and are just not well enough to work because you are too tired and dizzy(probably due to low oxygen saturation #'s under exertion). Do I now need to do an exercise test? (which is probably the only test I did not have yet)Do they expect us to work until we are almost dead before we qualify for any

benefits?If we have the "2.5 years" left, should we not be able to somewhat enjoy them as much as possible?I know some of you enjoy working and find it a way of staying busy, but what about those of us who hate are jobs and would rather be "busy" doing something we enjoy when we do have the energy.Please let me know what you think. Thanks, Dave (Probable) UIP 11/09

November 16, 2009

dave

i applied for disabililty about a year after diagnosis

i had been working part time

i got all of the forms from social security, filled out all of the paper work, made the appointment, a few weeks later a deposit was in my checking account for 6 months worth of disabillty, then the letter came, informing me that i would be receiving disabilty benefits

my pulmonary said that when someone is on oxygen, social security usually gives you disability

the web site can be confusing

some people never even go to the office for the appointment, they have the interview via telephone

the day of my interview, i did not wear any make-up and walked in with the hose in my nose

my suggestion -- call them up, get the forms, fill them out, submit them and see what happens

i also brought in copies of all of the test results and x-rays that i had

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Disability Benefits For UIPTo: Breathe-Support Date: Sunday, November 15, 2009, 8:35 PM

Now that the pathologist came back with UIP after my VATS I am now even more nervous and upset then before. Waiting to seew my Dr. on Wed. for full results.I have been out of work alot over this past year because of tests, doctors appointments, VATS operation, and alot of time because I just dont feel well.I was looking at the Social Security/Disability website and quite surprised the PF and all are other diseases were not listed under the impairments section. What I gathered from the site is that you have to have a "Chronic pulmonary insufficiency" with a very low score in either your FCV, FCV1, or DCLO. What if your do not meet these scores, and are just not well enough to work because you are too tired and dizzy(probably due to low oxygen saturation #'s under exertion). Do I now need to do an exercise test? (which is probably the only test I did not have yet)Do they expect us to work until we are almost dead before we qualify for any

benefits?If we have the "2.5 years" left, should we not be able to somewhat enjoy them as much as possible?I know some of you enjoy working and find it a way of staying busy, but what about those of us who hate are jobs and would rather be "busy" doing something we enjoy when we do have the energy.Please let me know what you think. Thanks, Dave (Probable) UIP 11/09

November 16, 2009

Hey Dave,

How have you been doing? I sent a couple of emails but I guess you didmn;t see

them. You are going to see Dr. Glassberg before me. How did you pull that off?

I've still got some phantom pain from a bruised nerve on my side but other than

that OK.

Let us know how you make out with the disability.

Terre, IPF 6-08, FL

>

> Now that the pathologist came back with UIP after my VATS I am now even more

nervous and upset then before. Waiting to seew my Dr. on Wed. for full results.

> I have been out of work alot over this past year because of tests, doctors

appointments, VATS operation, and alot of time because I just dont feel well.

> I was looking at the Social Security/Disability website and quite surprised

the PF and all are other diseases were not listed under the impairments section.

What I gathered from the site is that you have to have a " Chronic pulmonary

insufficiency " with a very low score in either your FCV, FCV1, or DCLO. What if

your do not meet these scores, and are just not well enough to work because you

are too tired and dizzy(probably due to low oxygen saturation #'s under

exertion). Do I now need to do an exercise test? (which is probably the only

test I did not have yet)

> Do they expect us to work until we are almost dead before we qualify for any

benefits?

> If we have the " 2.5 years " left, should we not be able to somewhat enjoy them

as much as possible?

> I know some of you enjoy working and find it a way of staying busy, but what

about those of us who hate are jobs and would rather be " busy " doing something

we enjoy when we do have the energy.

>

> Please let me know what you think. Thanks, Dave (Probable) UIP 11/09

>

November 16, 2009

Dave - As soon as I rec'd my diagnosis of IPF in Sept, I immediatley applied for SS disability. I too have missed a lot of work - and hated what I was doing. The SS process takes 3-4 months for approval so the sooner you start the process the better. It is a very LONG and drawn out process. They assign a person to your case and gather very detailed information about your doctor visits, tests, etc. I started a chronological listing of everything related to my IPF. I call her once every 2 weeks and let her know what else I have had done. Also, according to what I have been told by several people - even if you are denied on the first pass. You appeal, then appeal again. In almost all cases the 3rd pass will be approved.

BUT - it would be best if you stopped working immediately. Does your state have a short term disability program? I'm in CA and my pulmo dr wrote me off on disability as soon as I was diagnosed. In CA, I receive failry substantial benefits for 52 weeks. Hopefully, by then the SS Disb will be approved.

Hope this helps.

Myrlene Brown

La Verne, CA IPF 09/09

Subject: Disability Benefits For UIPTo: Breathe-Support Date: Sunday, November 15, 2009, 5:35 PM

Now that the pathologist came back with UIP after my VATS I am now even more nervous and upset then before. Waiting to seew my Dr. on Wed. for full results.I have been out of work alot over this past year because of tests, doctors appointments, VATS operation, and alot of time because I just dont feel well.I was looking at the Social Security/Disability website and quite surprised the PF and all are other diseases were not listed under the impairments section. What I gathered from the site is that you have to have a "Chronic pulmonary insufficiency" with a very low score in either your FCV, FCV1, or DCLO. What if your do not meet these scores, and are just not well enough to work because you are too tired and dizzy(probably due to low oxygen saturation #'s under exertion). Do I now need to do an exercise test? (which is probably the only test I did not have yet)Do they expect us to work until we are almost dead before we qualify for any

benefits?If we have the "2.5 years" left, should we not be able to somewhat enjoy them as much as possible?I know some of you enjoy working and find it a way of staying busy, but what about those of us who hate are jobs and would rather be "busy" doing something we enjoy when we do have the energy.Please let me know what you think. Thanks, Dave (Probable) UIP 11/09

November 16, 2009

Hey Terre,

I just got my stiches out this morning with Dr. Nueygen and had a x-ray. He

said e-ray was fine and operation is healing. Dr. Glassberg got a cancelation

when a I called. Good thing too, I dont have the patience to wait.

I am still in pain from the VATS. Dr. said it takes a while. I dont know how

you went back to work right away or how you left the hospital the next day after

the VATS, I was in way to much pain that next day, I needed another day of

morphine. I will let you know what Dr. Glassberg says on Wed..

Why are you using IPF 6/08 - I think you use the date the biopsy confirmed

diagnosis. - not sure.

Talk soon, Dave

> >

> > Now that the pathologist came back with UIP after my VATS I am now even more

nervous and upset then before. Waiting to seew my Dr. on Wed. for full results.

> > I have been out of work alot over this past year because of tests, doctors

appointments, VATS operation, and alot of time because I just dont feel well.

> > I was looking at the Social Security/Disability website and quite surprised

the PF and all are other diseases were not listed under the impairments section.

What I gathered from the site is that you have to have a " Chronic pulmonary

insufficiency " with a very low score in either your FCV, FCV1, or DCLO. What if

your do not meet these scores, and are just not well enough to work because you

are too tired and dizzy(probably due to low oxygen saturation #'s under

exertion). Do I now need to do an exercise test? (which is probably the only

test I did not have yet)

> > Do they expect us to work until we are almost dead before we qualify for any

benefits?

> > If we have the " 2.5 years " left, should we not be able to somewhat enjoy

them as much as possible?

> > I know some of you enjoy working and find it a way of staying busy, but what

about those of us who hate are jobs and would rather be " busy " doing something

we enjoy when we do have the energy.

> >

> > Please let me know what you think. Thanks, Dave (Probable) UIP 11/09

> >

>

November 16, 2009

i never had a biopsy

i use the date the high resolution cat scan said i had interstitial lung disease

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Disability Benefits For UIPTo: Breathe-Support Date: Monday, November 16, 2009, 1:33 PM

Hey Terre,I just got my stiches out this morning with Dr. Nueygen and had a x-ray. He said e-ray was fine and operation is healing. Dr. Glassberg got a cancelation when a I called. Good thing too, I dont have the patience to wait.I am still in pain from the VATS. Dr. said it takes a while. I dont know how you went back to work right away or how you left the hospital the next day after the VATS, I was in way to much pain that next day, I needed another day of morphine. I will let you know what Dr. Glassberg says on Wed..Why are you using IPF 6/08 - I think you use the date the biopsy confirmed diagnosis. - not sure. Talk soon, Dave> >> > Now that the pathologist came back with UIP after my VATS I am now even more nervous and upset then before. Waiting to seew my Dr. on Wed. for full results.> > I have been out of work alot over this past year because of tests, doctors appointments, VATS operation, and alot of time because I just dont

feel well.> > I was looking at the Social Security/Disability website and quite surprised the PF and all are other diseases were not listed under the impairments section. What I gathered from the site is that you have to have a "Chronic pulmonary insufficiency" with a very low score in either your FCV, FCV1, or DCLO. What if your do not meet these scores, and are just not well enough to work because you are too tired and dizzy(probably due to low oxygen saturation #'s under exertion). Do I now need to do an exercise test? (which is probably the only test I did not have yet)> > Do they expect us to work until we are almost dead before we qualify for any benefits?> > If we have the "2.5 years" left, should we not be able to somewhat enjoy them as much as possible?> > I know some of you enjoy working and find it a way of staying busy, but what about those of us who hate are jobs and would rather be "busy" doing

something we enjoy when we do have the energy.> > > > Please let me know what you think. Thanks, Dave (Probable) UIP 11/09> >>

November 16, 2009

Hi Dave,

I waited a week to go back to work, but did go home the next day.

I'm thinking about acupuncture to try to deaden the pain on my side. It's either

that or shots from a pain management doc. Although it seems to be better than it

was. I'll probably wait a little longer and see what happens.

Let me know what she says your options are. Her office hasn't called me to set

up an appointment yet.

I'm going to a woman's hopuse this weeek (whose husband died from IPF) to see

about organizing some fund raisers. If you are interested I'll let you know how

it comes out.

I've started designing a folded one page phamplet to give people info on IPF.

I'll see if they are interested in that idea.

Talk to you soon.

As for the the dx date, since the VATS confirmed what everyone said all along; I

must have had it since at least 6-08 so I'm sticking to it.

Terre, IPF 6-08, FL

> > >

> > > Now that the pathologist came back with UIP after my VATS I am now even

more nervous and upset then before. Waiting to seew my Dr. on Wed. for full

results.

> > > I have been out of work alot over this past year because of tests, doctors

appointments, VATS operation, and alot of time because I just dont feel well.

> > > I was looking at the Social Security/Disability website and quite

surprised the PF and all are other diseases were not listed under the

impairments section. What I gathered from the site is that you have to have a

" Chronic pulmonary insufficiency " with a very low score in either your FCV,

FCV1, or DCLO. What if your do not meet these scores, and are just not well

enough to work because you are too tired and dizzy(probably due to low oxygen

saturation #'s under exertion). Do I now need to do an exercise test? (which is

probably the only test I did not have yet)

> > > Do they expect us to work until we are almost dead before we qualify for

any benefits?

> > > If we have the " 2.5 years " left, should we not be able to somewhat enjoy

them as much as possible?

> > > I know some of you enjoy working and find it a way of staying busy, but

what about those of us who hate are jobs and would rather be " busy " doing

something we enjoy when we do have the energy.

> > >

> > > Please let me know what you think. Thanks, Dave (Probable) UIP 11/09

> > >

> >

>

November 16, 2009

Thanks all on the disability advice - Dave

>

> Subject: Disability Benefits For UIP

> To: Breathe-Support

> Date: Sunday, November 15, 2009, 5:35 PM

>

> Â