Re: Thanks to both who responded!

[Guest guest]

n,

Welcome to our little family though as everyone says I'm sorry you have reason to be here. You do have yourself in a bit of a pickle don't you? I do understand though why you wish to stay in Korea considering that's where you have health insurance. What you state regarding Medicaid in NC is correct as I just found out. The only thing I would point out that's different from what you stated is that even with SSDI you don't automatically qualify for Medicaid. I was recently turned down for Medicaid until I meet a $5100 deductable. Unless I'm hospitalized meeting that deductable will take me quite some time. Nevertheless I am receiving care at Duke University (probably one of the best places folks with this disease can be) They are working with me in their financial hardship program. So there are ways to get care but you do have to be creative and turn over lots of rocks to find what's

available.

My SSDI was approved in less than 6 months but I did live in NY at the time

"Normal" blood O2 levels are in the high 90's. That's for humans be they asian, caucasion, african or whatever. Doctors in Korea may consider 90 acceptable but if you're at 90 at rest, on exertion you are likely lower and that's cause for concern. Low 02 levels cause cellular damage in all your organs. Is there no such thing as O2 therapy in Korea? Or do the doctors just feel you're not ill enough for it?

Unfortunately there is not really any accepted treatment for many forms of fibrosis. Specifically for IPF there is nothing. Some doctors prescribe prednisone regardless but it's of little use for many folks. I have a slightly different form of fibrosis known as NSIP. I was treated with prednisone for several months, have been off of it entirely for 13 months and remain stable. I wish you had more specific information about which type of fibrosis you have. It would be tragic if there was something that could be done to slow your disease down and it was missed because of lack of information.

As for the age thing, this disease strikes all ages. I'm 48, we have had members as young as 19 and as old as well into their 80's. Different types have different average age of onset.The problem is it's rare enough that most doctors are just not familiar with it.

I wish I had some magic suggestion that would solve your problem. I'm glad you made it here, we can be supportive if nothing else!

Beth in NC age 48 Fibrotic NSIP 06/06

"For as long as I shall live, I will testify to Love."

Thanks to both who responded!

The situation is a little more complex than my initial post might indicate. I lived, before coming to Korea, in North Carolina, south of Wilmington. Although I could probably qualify for SSDI, it takes 16 months to process a claim according to Social Security two weeks ago. I could not continue teaching in North Carolina and have lost my ability to do any job which requires even a minimal amount of physical activity. And in North Carolina one is not eligible for Medicaid unless one is on SSDI, or less than 19 or more than 64 years old.The diagnosis was in the US. None of those who said that I had IPF were pulmonologists - rather they were internists who volunteered at the clinic I went to. They all agreed that there were no pulmonologists to whom they could refer me (ie the clinic couldn't pay for it, and neither could I.)I had complained for about 6 months about shortness of

breath on exercize, as I was an avid bike rider. After being told repeatedly that I just needed to exercize more, (I was riding a bike 150-200 miles a week for crying out loud!) I finally became so angry at the dismissive doctor that I shouted at him that he'd have to tell me how to safely ride a bike after dark in order for me to exercize more. He ordered a chest x-ray, and when that came back, a high resolution cat scan.When they told me that I had IPF they didn't tell me anything about it, but I began to find out stuff on the Internet. I sold everything I owned (bike, car, furniture etc) to come to Korea and teach here. I just wasn't ready to throw in the towel on enjoying life, and my time here has been wonderful.Relocating to an area where I have no friends, know no one, am sick, and living a hand to mouth existence, really doesn't appeal. My only family is a daughter who lives in

a 4th floor walk-up in New York City, crowding in with 3 other young women, and a totally disabled son in Texas.The diagnosis has been confirmed in Korea, by two different pulmonologists. One of them trained in the US and was a pulmonologist there for 20 years before returning home. He said to me "I haven't seen anyone as young as you with this since I left the US." One thing I've learned here is that some diseases - be glad you don't get Korean colds, because they last 4-7 weeks - are different in Asian populations than in Western populations.The 89 reading was during the 5 days of "where did all the air go" and I'd been sitting for about 20 minutes. Other than that it's been 90, always in the doctor's office. I've been told here that 90 or above is normal. Is that different than what is considered normal in the US?Although insurance here would pay for tests if a pulmonologist

ordered it, it would be necessary to go to Seoul, which means a minimum of 4 days off work...and that means no job. Although my boss would probably allow me one day off, ESL teachers typically do not have any sick leave. No job instantly means no insurance, visa cancellation and a deportation order.I realize I'm sort of in a box, but frankly, I prefer the Korean box to the American box. I have a life here which I enjoy. I'm just trying to figure out how to manage this so that I can keep working as long as possible. I'm in a new city with a new job as of Monday, so all the doctors who I saw before are now too far away to see and I have to find a new one...finding someone with even rudimentary English is a challenge. My Korean is limited to a few set phrases. Also Korean doctors don't like to answer questions, although they are warmer and more caring than most American doctors.If

I had information about treatments that ameliorate symptoms, other than oxygen which I already know about, I could give that information to a Korean doctor - so far most of them have tried very hard to come up with equivalent meds to what I was taking for other stuff when I moved here.If in Western populations blood oxygen is considered low at 90 or 91 or whatever, that's something a Korean doctor would pay attention to, for example, but I don't have any information like that. They are very aware that things are sometimes different in non-Asian populations, but often don't know HOW they're different. They actually are pretty accomodating.Anyway, that's my story, and I'm stickin' to it!n

[Guest guest]

marion

welcome to the group.

as said before it would be useful to know what type of pf you have.

if its due to auto immune condition then treating that would slow

your progression.

regarding what medications are prescribed, i take an immune

suppressant called aziathioprine which tries to pause the

inflammation thereby stopping the progression.

some of us on the board take a supplement called NAC which helps thin

mucous (thereby aiding wet coughing) and also acts like an anti-

oxident. this is not prescribed but purchased in health shops. if

you want to see what others think of azithioprine (imuran) or nac

search our historical posts.

but it seems that what you need most is oxygen and as you feel you

can't go home to the us and korea doesn't supply 02 therapy, maybe a

temporary solution for you would be to buy a portable concentrator.

these are expensive but you may be able to get a 2nd hand one on

ebay. these work on batteries rather than o2 tanks and may buy you

some thinking time.

best of luck

may

uip 0606 glasgow scotland

>

>

> The situation is a little more complex than my initial post might

> indicate. I lived, before coming to Korea, in North Carolina, south

> of Wilmington.

>

> Although I could probably qualify for SSDI, it takes 16 months to

> process a claim according to Social Security two weeks ago. I could

> not continue teaching in North Carolina and have lost my ability to

> do any job which requires even a minimal amount of physical

activity.

> And in North Carolina one is not eligible for Medicaid unless one

is

> on SSDI, or less than 19 or more than 64 years old.

>

> The diagnosis was in the US. None of those who said that I had IPF

> were pulmonologists - rather they were internists who volunteered

at

> the clinic I went to. They all agreed that there were no

> pulmonologists to whom they could refer me (ie the clinic couldn't

> pay for it, and neither could I.)

>

> I had complained for about 6 months about shortness of breath on

> exercize, as I was an avid bike rider. After being told repeatedly

> that I just needed to exercize more, (I was riding a bike 150-200

> miles a week for crying out loud!) I finally became so angry at the

> dismissive doctor that I shouted at him that he'd have to tell me

how

> to safely ride a bike after dark in order for me to exercize more.

He

> ordered a chest x-ray, and when that came back, a high resolution

cat

> scan.

>

> When they told me that I had IPF they didn't tell me anything about

> it, but I began to find out stuff on the Internet. I sold

everything

> I owned (bike, car, furniture etc) to come to Korea and teach here.

I

> just wasn't ready to throw in the towel on enjoying life, and my

time

> here has been wonderful.

>

> Relocating to an area where I have no friends, know no one, am

sick,

> and living a hand to mouth existence, really doesn't appeal. My

only

> family is a daughter who lives in a 4th floor walk-up in New York

> City, crowding in with 3 other young women, and a totally disabled

> son in Texas.

>

> The diagnosis has been confirmed in Korea, by two different

> pulmonologists. One of them trained in the US and was a

pulmonologist

> there for 20 years before returning home. He said to me " I haven't

> seen anyone as young as you with this since I left the US. " One

> thing I've learned here is that some diseases - be glad you don't

get

> Korean colds, because they last 4-7 weeks - are different in Asian

> populations than in Western populations.

>

> The 89 reading was during the 5 days of " where did all the air go "

> and I'd been sitting for about 20 minutes. Other than that it's

been

> 90, always in the doctor's office. I've been told here that 90 or

> above is normal. Is that different than what is considered normal

in

> the US?

>

> Although insurance here would pay for tests if a pulmonologist

> ordered it, it would be necessary to go to Seoul, which means a

> minimum of 4 days off work...and that means no job. Although my

boss

> would probably allow me one day off, ESL teachers typically do not

> have any sick leave. No job instantly means no insurance, visa

> cancellation and a deportation order.

>

> I realize I'm sort of in a box, but frankly, I prefer the Korean

box

> to the American box. I have a life here which I enjoy. I'm just

> trying to figure out how to manage this so that I can keep working

as

> long as possible.

>

> I'm in a new city with a new job as of Monday, so all the doctors

who

> I saw before are now too far away to see and I have to find a new

> one...finding someone with even rudimentary English is a challenge.

> My Korean is limited to a few set phrases. Also Korean doctors

don't

> like to answer questions, although they are warmer and more caring

> than most American doctors.

>

> If I had information about treatments that ameliorate symptoms,

other

> than oxygen which I already know about, I could give that

information

> to a Korean doctor - so far most of them have tried very hard to

come

> up with equivalent meds to what I was taking for other stuff when I

> moved here.

>

> If in Western populations blood oxygen is considered low at 90 or

91

> or whatever, that's something a Korean doctor would pay attention

to,

> for example, but I don't have any information like that. They are

> very aware that things are sometimes different in non-Asian

> populations, but often don't know HOW they're different. They

> actually are pretty accomodating.

>

> Anyway, that's my story, and I'm stickin' to it!

>

> n

>

[Guest guest]

n...I too want to say welcome to the group. It sounds like things are not working well for you right now. It will be a hard choice between going to Seoul for your health and losing your job. Hell if you do and hell if you don't as we say here in the states. Not having a job brings down so much you don't want I see by your mail. Your life is hard right now.

I'm sorry you must go through so much and do it without your children's help.

We are here for you and Bruce and others are a gold-mine full of information about treatment. It might help you to take to your Dr.

Being right where you really want to be is comforting I'm sure.

Keep in touch.

Mama-Sher, age 69. UIP (IPF?) 3-06, OR. Don't fret about tomorrow, God is already there!

Thanks to both who responded!

The situation is a little more complex than my initial post might indicate. I lived, before coming to Korea, in North Carolina, south of Wilmington. Although I could probably qualify for SSDI, it takes 16 months to process a claim according to Social Security two weeks ago. I could not continue teaching in North Carolina and have lost my ability to do any job which requires even a minimal amount of physical activity. And in North Carolina one is not eligible for Medicaid unless one is on SSDI, or less than 19 or more than 64 years old.The diagnosis was in the US. None of those who said that I had IPF were pulmonologists - rather they were internists who volunteered at the clinic I went to. They all agreed that there were no pulmonologists to whom they could refer me (ie the clinic couldn't pay for it, and neither could I.)I had complained for about 6 months about shortness of breath on exercize, as I was an avid bike rider. After being told repeatedly that I just needed to exercize more, (I was riding a bike 150-200 miles a week for crying out loud!) I finally became so angry at the dismissive doctor that I shouted at him that he'd have to tell me how to safely ride a bike after dark in order for me to exercize more. He ordered a chest x-ray, and when that came back, a high resolution cat scan.When they told me that I had IPF they didn't tell me anything about it, but I began to find out stuff on the Internet. I sold everything I owned (bike, car, furniture etc) to come to Korea and teach here. I just wasn't ready to throw in the towel on enjoying life, and my time here has been wonderful.Relocating to an area where I have no friends, know no one, am sick, and living a hand to mouth existence, really doesn't appeal. My only family is a daughter who lives in a 4th floor walk-up in New York City, crowding in with 3 other young women, and a totally disabled son in Texas.The diagnosis has been confirmed in Korea, by two different pulmonologists. One of them trained in the US and was a pulmonologist there for 20 years before returning home. He said to me "I haven't seen anyone as young as you with this since I left the US." One thing I've learned here is that some diseases - be glad you don't get Korean colds, because they last 4-7 weeks - are different in Asian populations than in Western populations.The 89 reading was during the 5 days of "where did all the air go" and I'd been sitting for about 20 minutes. Other than that it's been 90, always in the doctor's office. I've been told here that 90 or above is normal. Is that different than what is considered normal in the US?Although insurance here would pay for tests if a pulmonologist ordered it, it would be necessary to go to Seoul, which means a minimum of 4 days off work...and that means no job. Although my boss would probably allow me one day off, ESL teachers typically do not have any sick leave. No job instantly means no insurance, visa cancellation and a deportation order.I realize I'm sort of in a box, but frankly, I prefer the Korean box to the American box. I have a life here which I enjoy. I'm just trying to figure out how to manage this so that I can keep working as long as possible. I'm in a new city with a new job as of Monday, so all the doctors who I saw before are now too far away to see and I have to find a new one...finding someone with even rudimentary English is a challenge. My Korean is limited to a few set phrases. Also Korean doctors don't like to answer questions, although they are warmer and more caring than most American doctors.If I had information about treatments that ameliorate symptoms, other than oxygen which I already know about, I could give that information to a Korean doctor - so far most of them have tried very hard to come up with equivalent meds to what I was taking for other stuff when I moved here.If in Western populations blood oxygen is considered low at 90 or 91 or whatever, that's something a Korean doctor would pay attention to, for example, but I don't have any information like that. They are very aware that things are sometimes different in non-Asian populations, but often don't know HOW they're different. They actually are pretty accomodating.Anyway, that's my story, and I'm stickin' to it!n