NEW TO THE GROUP

[Guest guest]

Welcome to the group.

Alot of good people, and very helpful information.

love

[Guest guest]

Hi, and welcome to the group! I'm new here also, been here about a week.

Where in Ohio are you?I'm in n,Ohio. If you want you can email me

and maybe we can chat on the phone. If you are near where I live maybe

we can visit. I know what you are going thru, as I have ipf also. So

don't give up. My husband lost his job in April and hasn't found one

yet. Let me know if you want to have a nice chat! Nice to meet you.

>

> Hi everyone. My name is Tina. I have been reading your posts for a

> while and finally got up the nerve to join in. I was diagnosed with

> IPF in April, 2007, by open lung biopsy. I am 41 years old. I have

> 3 children, 22, 18, and 5. My disease has been labeled as " fast

> progressing " and, therefore, I am no longer able to live on my own

> and I am living in Ohio with my mother and stepfather. My youngest

> child, my son, Kaleb, lives here too. I had to transfer him from

> his school in West Virginia (our hometown) to the new school in Ohio

> in November. My husband is a coal miner in West Virginia and he is

> still there working 7 days a week. Since my illness, he has had to

> pick up the slack on everything...including the bills. My two older

> children (both girls) are in college full-time and live on their

> own. I would love it if they were able to help me, but I can't ask

> them to give up their lives. I am thankful for my mother and her

> ability to still care for me. I always thought I would be the one

> to help take care of her, and here we are....not at all what we

> expected. I have been evaluated at the Cleveland Clinic and UPMC in

> Pittsburgh for a double lung transplant, however, some other health

> problems are keeping me from being listed. Also, I have learned I

> have a high " antibody " count, which means a compatible match would

> be much harder for me than most other people. I also have a heart

> defect that has been detected now. So far I have been told my heart

> is not strong enough for a lung transplant and my lungs are not

> strong enough for a heart operation. I have had my rounds of

> steroids and Imuran, but there were no changes in my condition. I

> am, of course, on oxygen full-time at 4 ltr. I go back to Cleveland

> Clinic on January 9th and will, hopefully, have more definitive

> results of all of the testing. My BMI is also a hinderance. Since

> I am overweight, and unable to exercise, I watch what I eat, but do

> not seem to lose weight. I am 5'5 " and weigh 230 lbs. I weighed

> 185 about one year ago - and the weight came on while on the

> steroids. I have been told they will not do the lung transplant

> until my BMI is below 30. I am at 39 now. I have had 2

> hospitalizations this year for pneumonia and I am sick now. I know

> if I go to the hopsital I will be admitted, so I am trying to self-

> treat at home. I have my nebulizer fired up every 4 hours. I guess

> the reason I am here is because I am so sad. I feel terrible, but I

> thank God for every day that I have here. I have been blessed to

> have a wonderful family. My children are having a hard time dealing

> with me being sick and the inevitable downward spiral I seem to be

> on. Thank you for reading my post. I hope to make friends and

> receive support from this group.

>

[Guest guest]

Hang in there Tina- I was DX in 1995 and at one time was told I had 6

months-well I am still here and the doc is worm food-Try to hang on

to everything in your life that gives you joy-Most of all your sense

of humor-I know it's toough but hell so is every day life-

I have had times I felt like I was on top and times on the bottom-but

when your in the valley that is where the flowers grow-You will get

lots of thoughts of how and what you should do- so pick and choose

wisely grasshopper-It is all according to your will to keep fighting-

Me I laugh about it and crack jokes but thats how I cope with- No way

am I gonna die and some man marry up with my wife and spend my

insurance money lol-

Just when you feel it building up in you and you feel like your gonna

bust or suffacate bet it out, don't hold it in scream , hollar kick

the dog do something any how thats my two cents-Good luck in journey

and God Bless

In Breathe-Support , " tjnikita " wrote:

>

> Hi everyone. My name is Tina. I have been reading your posts for

a

> while and finally got up the nerve to join in. I was diagnosed

with

> IPF in April, 2007, by open lung biopsy. I am 41 years old. I

have

> 3 children, 22, 18, and 5. My disease has been labeled as " fast

> progressing " and, therefore, I am no longer able to live on my own

> and I am living in Ohio with my mother and stepfather. My youngest

> child, my son, Kaleb, lives here too. I had to transfer him from

> his school in West Virginia (our hometown) to the new school in

Ohio

> in November. My husband is a coal miner in West Virginia and he is

> still there working 7 days a week. Since my illness, he has had to

> pick up the slack on everything...including the bills. My two

older

> children (both girls) are in college full-time and live on their

> own. I would love it if they were able to help me, but I can't ask

> them to give up their lives. I am thankful for my mother and her

> ability to still care for me. I always thought I would be the one

> to help take care of her, and here we are....not at all what we

> expected. I have been evaluated at the Cleveland Clinic and UPMC

in

> Pittsburgh for a double lung transplant, however, some other health

> problems are keeping me from being listed. Also, I have learned I

> have a high " antibody " count, which means a compatible match would

> be much harder for me than most other people. I also have a heart

> defect that has been detected now. So far I have been told my

heart

> is not strong enough for a lung transplant and my lungs are not

> strong enough for a heart operation. I have had my rounds of

> steroids and Imuran, but there were no changes in my condition. I

> am, of course, on oxygen full-time at 4 ltr. I go back to

Cleveland

> Clinic on January 9th and will, hopefully, have more definitive

> results of all of the testing. My BMI is also a hinderance. Since

> I am overweight, and unable to exercise, I watch what I eat, but do

> not seem to lose weight. I am 5'5 " and weigh 230 lbs. I weighed

> 185 about one year ago - and the weight came on while on the

> steroids. I have been told they will not do the lung transplant

> until my BMI is below 30. I am at 39 now. I have had 2

> hospitalizations this year for pneumonia and I am sick now. I know

> if I go to the hopsital I will be admitted, so I am trying to self-

> treat at home. I have my nebulizer fired up every 4 hours. I

guess

> the reason I am here is because I am so sad. I feel terrible, but

I

> thank God for every day that I have here. I have been blessed to

> have a wonderful family. My children are having a hard time

dealing

> with me being sick and the inevitable downward spiral I seem to be

> on. Thank you for reading my post. I hope to make friends and

> receive support from this group.

>

[Guest guest]

Tina, You have made the first step in your

process of feeling better..you found us!!!

This group is amazing..please write anything you need to get out!!!!

We've been there and totally "get it"

There are many really wise people here and I poersonally think they

have helped me stay stable for

the past year.

You can rant, rave, cry, laugh and cuss!!!Your words are all OK.

You have to get rid of the pnuemonia...it can cause more fibrosis!!

Z fibriotic NSIP/05

Z

fibriotic NSIP/o5/PA

And “mild”

PH/10/07 and Reynaud’s too!!

Potter,

reader,carousel lover and MomMom to

Darah

“I’m gonna

be iron like a lion in Zion” Bob Marley

tjnikita wrote:

Hi everyone. My name is Tina. I have been reading your posts for a

while and finally got up the nerve to join in. I was diagnosed with

IPF in April, 2007, by open lung biopsy. I am 41 years old. I have

3 children, 22, 18, and 5. My disease has been labeled as "fast

progressing" and, therefore, I am no longer able to live on my own

and I am living in Ohio with my mother and stepfather. My youngest

child, my son, Kaleb, lives here too. I had to transfer him from

his school in West Virginia (our hometown) to the new school in Ohio

in November. My husband is a coal miner in West Virginia and he is

still there working 7 days a week. Since my illness, he has had to

pick up the slack on everything...including the bills. My two

older

children (both girls) are in college full-time and live on their

own. I would love it if they were able to help me, but I can't ask

them to give up their lives. I am thankful for my mother and her

ability to still care for me. I always thought I would be the one

to help take care of her, and here we are....not at all what we

expected. I have been evaluated at the Cleveland Clinic and UPMC in

Pittsburgh for a double lung transplant, however, some other health

problems are keeping me from being listed. Also, I have learned I

have a high "antibody" count, which means a compatible match would

be much harder for me than most other people. I also have a heart

defect that has been detected now. So far I have been told my heart

is not strong enough for a lung transplant and my lungs are not

strong enough for a heart operation. I have had my rounds of

steroids and Imuran, but there were no changes in my condition. I

am, of course, on oxygen full-time at 4 ltr. I go back to Cleveland

Clinic on January 9th and will, hopefully, have more definitive

results of all of the testing. My BMI is also a hinderance. Since

I am overweight, and unable to exercise, I watch what I eat, but do

not seem to lose weight. I am 5'5" and weigh 230 lbs. I weighed

185 about one year ago - and the weight came on while on the

steroids. I have been told they will not do the lung transplant

until my BMI is below 30. I am at 39 now. I have had 2

hospitalizations this year for pneumonia and I am sick now. I know

if I go to the hopsital I will be admitted, so I am trying to self-

treat at home. I have my nebulizer fired up every 4 hours. I guess

the reason I am here is because I am so sad. I feel terrible, but I

thank God for every day that I have here. I have been blessed to

have a wonderful family. My children are having a hard time dealing

with me being sick and the inevitable downward spiral I seem to be

on. Thank you for reading my post. I hope to make friends and

receive support from this group.

No virus found in this incoming message.

Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.17.9/1197 - Release Date: 12/25/2007 8:04 PM

[Guest guest]

Tina, You have made the first step in your

process of feeling better..you found us!!!

This group is amazing..please write anything you need to get out!!!!

We've been there and totally "get it"

There are many really wise people here and I poersonally think they

have helped me stay stable for

the past year.

You can rant, rave, cry, laugh and cuss!!!Your words are all OK.

You have to get rid of the pnuemonia...it can cause more fibrosis!!

Z fibriotic NSIP/05

Z

fibriotic NSIP/o5/PA

And “mild”

PH/10/07 and Reynaud’s too!!

Potter,

reader,carousel lover and MomMom to

Darah

“I’m gonna

be iron like a lion in Zion” Bob Marley

tjnikita wrote:

Hi everyone. My name is Tina. I have been reading your posts for a

while and finally got up the nerve to join in. I was diagnosed with

IPF in April, 2007, by open lung biopsy. I am 41 years old. I have

3 children, 22, 18, and 5. My disease has been labeled as "fast

progressing" and, therefore, I am no longer able to live on my own

and I am living in Ohio with my mother and stepfather. My youngest

child, my son, Kaleb, lives here too. I had to transfer him from

his school in West Virginia (our hometown) to the new school in Ohio

in November. My husband is a coal miner in West Virginia and he is

still there working 7 days a week. Since my illness, he has had to

pick up the slack on everything...including the bills. My two

older

children (both girls) are in college full-time and live on their

own. I would love it if they were able to help me, but I can't ask

them to give up their lives. I am thankful for my mother and her

ability to still care for me. I always thought I would be the one

to help take care of her, and here we are....not at all what we

expected. I have been evaluated at the Cleveland Clinic and UPMC in

Pittsburgh for a double lung transplant, however, some other health

problems are keeping me from being listed. Also, I have learned I

have a high "antibody" count, which means a compatible match would

be much harder for me than most other people. I also have a heart

defect that has been detected now. So far I have been told my heart

is not strong enough for a lung transplant and my lungs are not

strong enough for a heart operation. I have had my rounds of

steroids and Imuran, but there were no changes in my condition. I

am, of course, on oxygen full-time at 4 ltr. I go back to Cleveland

Clinic on January 9th and will, hopefully, have more definitive

results of all of the testing. My BMI is also a hinderance. Since

I am overweight, and unable to exercise, I watch what I eat, but do

not seem to lose weight. I am 5'5" and weigh 230 lbs. I weighed

185 about one year ago - and the weight came on while on the

steroids. I have been told they will not do the lung transplant

until my BMI is below 30. I am at 39 now. I have had 2

hospitalizations this year for pneumonia and I am sick now. I know

if I go to the hopsital I will be admitted, so I am trying to self-

treat at home. I have my nebulizer fired up every 4 hours. I guess

the reason I am here is because I am so sad. I feel terrible, but I

thank God for every day that I have here. I have been blessed to

have a wonderful family. My children are having a hard time dealing

with me being sick and the inevitable downward spiral I seem to be

on. Thank you for reading my post. I hope to make friends and

receive support from this group.

No virus found in this incoming message.

Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.17.9/1197 - Release Date: 12/25/2007 8:04 PM

[Guest guest]

Tina,

"You have a friend in me." Welcome to our group. If you have been reading, you know we are struggling just like you. All of us battling our own demons. We help one another by sharing information and sharing emotional catastrophe that comes with this disease. I am very familiar with sad. It is especially hard around holidays when we are thinking, ..... will this be the last time?

I was born in West Virginia and my dad was a coal miner. Also my father in law. Well, as you know almost everybody there is. You are so fortunate to have a mom to care for you. But, what a tragedy that your family must be separated.

I'm very pleased that you are going to Cleveland Clinic. Verrrrry good place.

Thank you for coming out to meet us. Please know you will be cared for and prayed for here.

Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.>> Hi everyone. My name is Tina. I have been reading your posts for a > while and finally got up the nerve to join in. I was diagnosed with > IPF in April, 2007, by open lung biopsy. I am 41 years old. I have > 3 children, 22, 18, and 5. My disease has been labeled as "fast > progressing" and, therefore, I am no longer able to live on my own > and I am living in Ohio with my mother and stepfather. My youngest > child, my son, Kaleb, lives here too. I had to transfer him from > his school in West Virginia (our hometown) to the new school in Ohio > in November. My husband is a coal miner in West Virginia and he is > still there working 7 days a week. Since my illness, he has had to > pick up the slack on everything...including the bills. My two older > children (both girls) are in college full-time and live on their > own. I would love it if they were able to help me, but I can't ask > them to give up their lives. I am thankful for my mother and her > ability to still care for me. I always thought I would be the one > to help take care of her, and here we are....not at all what we > expected. I have been evaluated at the Cleveland Clinic and UPMC in > Pittsburgh for a double lung transplant, however, some other health > problems are keeping me from being listed. Also, I have learned I > have a high "antibody" count, which means a compatible match would > be much harder for me than most other people. I also have a heart > defect that has been detected now. So far I have been told my heart > is not strong enough for a lung transplant and my lungs are not > strong enough for a heart operation. I have had my rounds of > steroids and Imuran, but there were no changes in my condition. I > am, of course, on oxygen full-time at 4 ltr. I go back to Cleveland > Clinic on January 9th and will, hopefully, have more definitive > results of all of the testing. My BMI is also a hinderance. Since > I am overweight, and unable to exercise, I watch what I eat, but do > not seem to lose weight. I am 5'5" and weigh 230 lbs. I weighed > 185 about one year ago - and the weight came on while on the > steroids. I have been told they will not do the lung transplant > until my BMI is below 30. I am at 39 now. I have had 2 > hospitalizations this year for pneumonia and I am sick now. I know > if I go to the hopsital I will be admitted, so I am trying to self-> treat at home. I have my nebulizer fired up every 4 hours. I guess > the reason I am here is because I am so sad. I feel terrible, but I > thank God for every day that I have here. I have been blessed to > have a wonderful family. My children are having a hard time dealing > with me being sick and the inevitable downward spiral I seem to be > on. Thank you for reading my post. I hope to make friends and > receive support from this group.>

[Guest guest]

I used to do a lot of joking around. I was always trying to make

everyone happy. But, I have had a hard time since this disease

crept up on me. I know I need to turn my self around and get back

to the me I used to be. I hope I am able to do that. You are an

inspiration. Thank you.

Tina

IPF/April 07/Ohio

> >

> > Hi everyone. My name is Tina. I have been reading your posts

for

> a

> > while and finally got up the nerve to join in. I was diagnosed

> with

> > IPF in April, 2007, by open lung biopsy. I am 41 years old. I

> have

> > 3 children, 22, 18, and 5. My disease has been labeled as " fast

> > progressing " and, therefore, I am no longer able to live on my

own

> > and I am living in Ohio with my mother and stepfather. My

youngest

> > child, my son, Kaleb, lives here too. I had to transfer him

from

> > his school in West Virginia (our hometown) to the new school in

> Ohio

> > in November. My husband is a coal miner in West Virginia and he

is

> > still there working 7 days a week. Since my illness, he has had

to

> > pick up the slack on everything...including the bills. My two

> older

> > children (both girls) are in college full-time and live on their

> > own. I would love it if they were able to help me, but I can't

ask

> > them to give up their lives. I am thankful for my mother and her

> > ability to still care for me. I always thought I would be the

one

> > to help take care of her, and here we are....not at all what we

> > expected. I have been evaluated at the Cleveland Clinic and

UPMC

> in

> > Pittsburgh for a double lung transplant, however, some other

health

> > problems are keeping me from being listed. Also, I have learned

I

> > have a high " antibody " count, which means a compatible match

would

> > be much harder for me than most other people. I also have a

heart

> > defect that has been detected now. So far I have been told my

> heart

> > is not strong enough for a lung transplant and my lungs are not

> > strong enough for a heart operation. I have had my rounds of

> > steroids and Imuran, but there were no changes in my condition.

I

> > am, of course, on oxygen full-time at 4 ltr. I go back to

> Cleveland

> > Clinic on January 9th and will, hopefully, have more definitive

> > results of all of the testing. My BMI is also a hinderance.

Since

> > I am overweight, and unable to exercise, I watch what I eat, but

do

> > not seem to lose weight. I am 5'5 " and weigh 230 lbs. I

weighed

> > 185 about one year ago - and the weight came on while on the

> > steroids. I have been told they will not do the lung transplant

> > until my BMI is below 30. I am at 39 now. I have had 2

> > hospitalizations this year for pneumonia and I am sick now. I

know

> > if I go to the hopsital I will be admitted, so I am trying to

self-

> > treat at home. I have my nebulizer fired up every 4 hours. I

> guess

> > the reason I am here is because I am so sad. I feel terrible,

but

> I

> > thank God for every day that I have here. I have been blessed

to

> > have a wonderful family. My children are having a hard time

> dealing

> > with me being sick and the inevitable downward spiral I seem to

be

> > on. Thank you for reading my post. I hope to make friends and

> > receive support from this group.

> >

>

[Guest guest]

Bruce: Thank you for writing. I was impressed with what you had to

say. My oxygen level is maintaining well at 4 liters. And, I do

enjoy lots of things, except for the fact that I tire so easily and

I hate to leave the house. I do get out occasionally though. I go

to church every Sunday and my son was in the Christmas program at

church. He was excited to be part of something new.

Before this disease, I was a full-time Paralegal too. I gave that

up due to my increased absences and my boss' lack of understanding.

Go figure, lawyers! I have been a Paralegal for 20 years and I miss

it. I miss the people. I miss everything about " home " . Heck, I

even miss our darn cows that were like Houdini - escaping every time

you turn around, they would find a place in the old fence to get

through! What a headache!

I am looking forward to my appointment at the Cleveland Clinic on

January 9th. I will be loaded with questions and, unfortunately, I

will be demanding firm answers. I feel like I keep getting wishy-

washy answers. My heart problem began in 2003 when I was admitted

to the hospital for shortness of breath and chest pain. The next

day a heart cath. was done and a blockage was found where a stent

was placed (LAD). This blockage was not a typical one. My

cardiologist explained that it was probably something I was born

with, rather than acquired due to coronary artery disease. I had

some kind of " twisted " artery which resulted in my heart only

working at 50%. Once the stent was placed, WOW - I felt like I had

a new lease on life. I complained about SOB and so on since I was a

child, but no doctor felt it worth looking into since I had no other

signs or symptoms. At that time, in 2003, my cardiologist remarked

about the clubbing of my fingers. But, he did not mention seeing a

pulmonologist. I have severe clubbing. (I'll get you photos

later). Anyway, following the stent placement, I have never had any

further heart complications. I take Plavix, Atenolol and Altace for

my heart. I have had regular cardio checkups and everything was

fine. Then, in September '07, while undergoing the evaluation for

transplant at UPMC, a right and left heart cath was performed at

UPMC. It showed nothing - according to the cardiologist. But,

because of my heart disease history in my family (sister had 5

bypasses last year at age 39), the transplant surgeons recommended

that I present for a Dobutamine stress test. So, on November 19th I

had the test at UPMC. This is the test which revealed

an " abnormality/defect " . I am still waiting to hear what should be

done next.

As for Prednisone, I was on Prednisone 6 different times in 2006.

Then I was put on it again after my lung biopsy in April 2007. I

was at 60 mg/day and when I visited the Cleveland Clinic in July,

the doc there said stop taking it - it won't do any good. I have to

agree that I did not feel any better while on it, versus being off

of it. The weight gain came during those episodes of being on it.

I did not experience any other adverse effects, luckily.

My aim, at this point, is to demand a definitive answer regarding

transplant and whether or not I will be able to get listed and, if

not, then pursuing maximizing my quality of life today and every day

from here on out. I want to enjoy what time I have. I refuse to

sit by and let death creep up on me. I am at peace with everything,

I have accepted what has been given me, and I am beyond

asking " why " , and I am looking forward to my day of reckoning and I

know God has prepared a place for me in Heaven. But I won't go

without a fight! The world needs people like me. Just plain, old,

normal people - with exceptions.

God Bless,

Tina

IPF/April 07/Ohio

> >

> > Hi everyone. My name is Tina. I have been reading your posts

for

> a

> > while and finally got up the nerve to join in. I was diagnosed

> with

> > IPF in April, 2007, by open lung biopsy. I am 41 years old. I

> have

> > 3 children, 22, 18, and 5. My disease has been labeled as " fast

> > progressing " and, therefore, I am no longer able to live on my

own

> > and I am living in Ohio with my mother and stepfather. My

youngest

> > child, my son, Kaleb, lives here too. I had to transfer him

from

> > his school in West Virginia (our hometown) to the new school in

> Ohio

> > in November. My husband is a coal miner in West Virginia and he

is

> > still there working 7 days a week. Since my illness, he has had

to

> > pick up the slack on everything...including the bills. My two

> older

> > children (both girls) are in college full-time and live on their

> > own. I would love it if they were able to help me, but I can't

ask

> > them to give up their lives. I am thankful for my mother and her

> > ability to still care for me. I always thought I would be the

one

> > to help take care of her, and here we are....not at all what we

> > expected. I have been evaluated at the Cleveland Clinic and

UPMC

> in

> > Pittsburgh for a double lung transplant, however, some other

health

> > problems are keeping me from being listed. Also, I have learned

I

> > have a high " antibody " count, which means a compatible match

would

> > be much harder for me than most other people. I also have a

heart

> > defect that has been detected now. So far I have been told my

> heart

> > is not strong enough for a lung transplant and my lungs are not

> > strong enough for a heart operation. I have had my rounds of

> > steroids and Imuran, but there were no changes in my condition.

I

> > am, of course, on oxygen full-time at 4 ltr. I go back to

> Cleveland

> > Clinic on January 9th and will, hopefully, have more definitive

> > results of all of the testing. My BMI is also a hinderance.

Since

> > I am overweight, and unable to exercise, I watch what I eat, but

do

> > not seem to lose weight. I am 5'5 " and weigh 230 lbs. I

weighed

> > 185 about one year ago - and the weight came on while on the

> > steroids. I have been told they will not do the lung transplant

> > until my BMI is below 30. I am at 39 now. I have had 2

> > hospitalizations this year for pneumonia and I am sick now. I

know

> > if I go to the hopsital I will be admitted, so I am trying to

self-

> > treat at home. I have my nebulizer fired up every 4 hours. I

> guess

> > the reason I am here is because I am so sad. I feel terrible,

but

> I

> > thank God for every day that I have here. I have been blessed

to

> > have a wonderful family. My children are having a hard time

> dealing

> > with me being sick and the inevitable downward spiral I seem to

be

> > on. Thank you for reading my post. I hope to make friends and

> > receive support from this group.

> >

>

[Guest guest]

Joyce: Yes, I do get Social Security Disability. I was rather

lucky in that regard. I waited 6 months, I applied and 58 days

later I had my first check. I have heard horror stories about SS.

Tina

IPF/April 07/OH

> > > >

> > > > Hi everyone. My name is Tina. I have been reading your posts

> > for

> > > a

> > > > while and finally got up the nerve to join in. I was

diagnosed

> > > with

> > > > IPF in April, 2007, by open lung biopsy. I am 41 years old. I

> > > have

> > > > 3 children, 22, 18, and 5. My disease has been labeled

as " fast

> > > > progressing " and, therefore, I am no longer able to live on

my

> > own

> > > > and I am living in Ohio with my mother and stepfather. My

> > youngest

> > > > child, my son, Kaleb, lives here too. I had to transfer him

> > from

> > > > his school in West Virginia (our hometown) to the new school

in

> > > Ohio

> > > > in November. My husband is a coal miner in West Virginia and

he

> > is

> > > > still there working 7 days a week. Since my illness, he has

had

> > to

> > > > pick up the slack on everything...including the bills. My two

> > > older

> > > > children (both girls) are in college full-time and live on

their

> > > > own. I would love it if they were able to help me, but I

can't

> > ask

> > > > them to give up their lives. I am thankful for my mother and

her

> > > > ability to still care for me. I always thought I would be the

> > one

> > > > to help take care of her, and here we are....not at all what

we

> > > > expected. I have been evaluated at the Cleveland Clinic and

> > UPMC

> > > in

> > > > Pittsburgh for a double lung transplant, however, some other

> > health

> > > > problems are keeping me from being listed. Also, I have

learned

> > I

> > > > have a high " antibody " count, which means a compatible match

> > would

> > > > be much harder for me than most other people. I also have a

> > heart

> > > > defect that has been detected now. So far I have been told my

> > > heart

> > > > is not strong enough for a lung transplant and my lungs are

not

> > > > strong enough for a heart operation. I have had my rounds of

> > > > steroids and Imuran, but there were no changes in my

condition.

> > I

> > > > am, of course, on oxygen full-time at 4 ltr. I go back to

> > > Cleveland

> > > > Clinic on January 9th and will, hopefully, have more

definitive

> > > > results of all of the testing. My BMI is also a hinderance.

> > Since

> > > > I am overweight, and unable to exercise, I watch what I eat,

but

> > do

> > > > not seem to lose weight. I am 5'5 " and weigh 230 lbs. I

> > weighed

> > > > 185 about one year ago - and the weight came on while on the

> > > > steroids. I have been told they will not do the lung

transplant

> > > > until my BMI is below 30. I am at 39 now. I have had 2

> > > > hospitalizations this year for pneumonia and I am sick now. I

> > know

> > > > if I go to the hopsital I will be admitted, so I am trying to

> > self-

> > > > treat at home. I have my nebulizer fired up every 4 hours. I

> > > guess

> > > > the reason I am here is because I am so sad. I feel terrible,

> > but

> > > I

> > > > thank God for every day that I have here. I have been blessed

> > to

> > > > have a wonderful family. My children are having a hard time

> > > dealing

> > > > with me being sick and the inevitable downward spiral I seem

to

> > be

> > > > on. Thank you for reading my post. I hope to make friends and

> > > > receive support from this group.

> > > >

> > >

> >

>

[Guest guest]

Joyce: Yes, I do get Social Security Disability. I was rather

lucky in that regard. I waited 6 months, I applied and 58 days

later I had my first check. I have heard horror stories about SS.

Tina

IPF/April 07/OH

> > > >

> > > > Hi everyone. My name is Tina. I have been reading your posts

> > for

> > > a

> > > > while and finally got up the nerve to join in. I was

diagnosed

> > > with

> > > > IPF in April, 2007, by open lung biopsy. I am 41 years old. I

> > > have

> > > > 3 children, 22, 18, and 5. My disease has been labeled

as " fast

> > > > progressing " and, therefore, I am no longer able to live on

my

> > own

> > > > and I am living in Ohio with my mother and stepfather. My

> > youngest

> > > > child, my son, Kaleb, lives here too. I had to transfer him

> > from

> > > > his school in West Virginia (our hometown) to the new school

in

> > > Ohio

> > > > in November. My husband is a coal miner in West Virginia and

he

> > is

> > > > still there working 7 days a week. Since my illness, he has

had

> > to

> > > > pick up the slack on everything...including the bills. My two

> > > older

> > > > children (both girls) are in college full-time and live on

their

> > > > own. I would love it if they were able to help me, but I

can't

> > ask

> > > > them to give up their lives. I am thankful for my mother and

her

> > > > ability to still care for me. I always thought I would be the

> > one

> > > > to help take care of her, and here we are....not at all what

we

> > > > expected. I have been evaluated at the Cleveland Clinic and

> > UPMC

> > > in

> > > > Pittsburgh for a double lung transplant, however, some other

> > health

> > > > problems are keeping me from being listed. Also, I have

learned

> > I

> > > > have a high " antibody " count, which means a compatible match

> > would

> > > > be much harder for me than most other people. I also have a

> > heart

> > > > defect that has been detected now. So far I have been told my

> > > heart

> > > > is not strong enough for a lung transplant and my lungs are

not

> > > > strong enough for a heart operation. I have had my rounds of

> > > > steroids and Imuran, but there were no changes in my

condition.

> > I

> > > > am, of course, on oxygen full-time at 4 ltr. I go back to

> > > Cleveland

> > > > Clinic on January 9th and will, hopefully, have more

definitive

> > > > results of all of the testing. My BMI is also a hinderance.

> > Since

> > > > I am overweight, and unable to exercise, I watch what I eat,

but

> > do

> > > > not seem to lose weight. I am 5'5 " and weigh 230 lbs. I

> > weighed

> > > > 185 about one year ago - and the weight came on while on the

> > > > steroids. I have been told they will not do the lung

transplant

> > > > until my BMI is below 30. I am at 39 now. I have had 2

> > > > hospitalizations this year for pneumonia and I am sick now. I

> > know

> > > > if I go to the hopsital I will be admitted, so I am trying to

> > self-

> > > > treat at home. I have my nebulizer fired up every 4 hours. I

> > > guess

> > > > the reason I am here is because I am so sad. I feel terrible,

> > but

> > > I

> > > > thank God for every day that I have here. I have been blessed

> > to

> > > > have a wonderful family. My children are having a hard time

> > > dealing

> > > > with me being sick and the inevitable downward spiral I seem

to

> > be

> > > > on. Thank you for reading my post. I hope to make friends and

> > > > receive support from this group.

> > > >

> > >

> >

>

[Guest guest]

Hello Zena: Thank you for welcoming me. I love this group! I am

simply amazed at how easy it is to talk to folks facing the same

problems I am facing. Maybe our children will get to play together

someday. I, like many others, would love to meet everyone face to

face. What a grand group we are!

Tina

IPF/April 07/Ohio

> >

> > Hi everyone. My name is Tina. I have been reading your posts for

a

> > while and finally got up the nerve to join in. I was diagnosed

with

> > IPF in April, 2007, by open lung biopsy. I am 41 years old. I

have

> > 3 children, 22, 18, and 5. My disease has been labeled as " fast

> > progressing " and, therefore, I am no longer able to live on my

own

> > and I am living in Ohio with my mother and stepfather. My

youngest

> > child, my son, Kaleb, lives here too. I had to transfer him from

> > his school in West Virginia (our hometown) to the new school in

Ohio

> > in November. My husband is a coal miner in West Virginia and he

is

> > still there working 7 days a week. Since my illness, he has had

to

> > pick up the slack on everything...including the bills. My two

older

> > children (both girls) are in college full-time and live on their

> > own. I would love it if they were able to help me, but I can't

ask

> > them to give up their lives. I am thankful for my mother and her

> > ability to still care for me. I always thought I would be the one

> > to help take care of her, and here we are....not at all what we

> > expected. I have been evaluated at the Cleveland Clinic and UPMC

in

> > Pittsburgh for a double lung transplant, however, some other

health

> > problems are keeping me from being listed. Also, I have learned I

> > have a high " antibody " count, which means a compatible match

would

> > be much harder for me than most other people. I also have a heart

> > defect that has been detected now. So far I have been told my

heart

> > is not strong enough for a lung transplant and my lungs are not

> > strong enough for a heart operation. I have had my rounds of

> > steroids and Imuran, but there were no changes in my condition. I

> > am, of course, on oxygen full-time at 4 ltr. I go back to

Cleveland

> > Clinic on January 9th and will, hopefully, have more definitive

> > results of all of the testing. My BMI is also a hinderance. Since

> > I am overweight, and unable to exercise, I watch what I eat, but

do

> > not seem to lose weight. I am 5'5 " and weigh 230 lbs. I weighed

> > 185 about one year ago - and the weight came on while on the

> > steroids. I have been told they will not do the lung transplant

> > until my BMI is below 30. I am at 39 now. I have had 2

> > hospitalizations this year for pneumonia and I am sick now. I

know

> > if I go to the hopsital I will be admitted, so I am trying to

self-

> > treat at home. I have my nebulizer fired up every 4 hours. I

guess

> > the reason I am here is because I am so sad. I feel terrible,

but I

> > thank God for every day that I have here. I have been blessed to

> > have a wonderful family. My children are having a hard time

dealing

> > with me being sick and the inevitable downward spiral I seem to

be

> > on. Thank you for reading my post. I hope to make friends and

> > receive support from this group.

> >

>

[Guest guest]

Hello Zena: Thank you for welcoming me. I love this group! I am

simply amazed at how easy it is to talk to folks facing the same

problems I am facing. Maybe our children will get to play together

someday. I, like many others, would love to meet everyone face to

face. What a grand group we are!

Tina

IPF/April 07/Ohio

> >

> > Hi everyone. My name is Tina. I have been reading your posts for

a

> > while and finally got up the nerve to join in. I was diagnosed

with

> > IPF in April, 2007, by open lung biopsy. I am 41 years old. I

have

> > 3 children, 22, 18, and 5. My disease has been labeled as " fast

> > progressing " and, therefore, I am no longer able to live on my

own

> > and I am living in Ohio with my mother and stepfather. My

youngest

> > child, my son, Kaleb, lives here too. I had to transfer him from

> > his school in West Virginia (our hometown) to the new school in

Ohio

> > in November. My husband is a coal miner in West Virginia and he

is

> > still there working 7 days a week. Since my illness, he has had

to

> > pick up the slack on everything...including the bills. My two

older

> > children (both girls) are in college full-time and live on their

> > own. I would love it if they were able to help me, but I can't

ask

> > them to give up their lives. I am thankful for my mother and her

> > ability to still care for me. I always thought I would be the one

> > to help take care of her, and here we are....not at all what we

> > expected. I have been evaluated at the Cleveland Clinic and UPMC

in

> > Pittsburgh for a double lung transplant, however, some other

health

> > problems are keeping me from being listed. Also, I have learned I

> > have a high " antibody " count, which means a compatible match

would

> > be much harder for me than most other people. I also have a heart

> > defect that has been detected now. So far I have been told my

heart

> > is not strong enough for a lung transplant and my lungs are not

> > strong enough for a heart operation. I have had my rounds of

> > steroids and Imuran, but there were no changes in my condition. I

> > am, of course, on oxygen full-time at 4 ltr. I go back to

Cleveland

> > Clinic on January 9th and will, hopefully, have more definitive

> > results of all of the testing. My BMI is also a hinderance. Since

> > I am overweight, and unable to exercise, I watch what I eat, but

do

> > not seem to lose weight. I am 5'5 " and weigh 230 lbs. I weighed

> > 185 about one year ago - and the weight came on while on the

> > steroids. I have been told they will not do the lung transplant

> > until my BMI is below 30. I am at 39 now. I have had 2

> > hospitalizations this year for pneumonia and I am sick now. I

know

> > if I go to the hopsital I will be admitted, so I am trying to

self-

> > treat at home. I have my nebulizer fired up every 4 hours. I

guess

> > the reason I am here is because I am so sad. I feel terrible,

but I

> > thank God for every day that I have here. I have been blessed to

> > have a wonderful family. My children are having a hard time

dealing

> > with me being sick and the inevitable downward spiral I seem to

be

> > on. Thank you for reading my post. I hope to make friends and

> > receive support from this group.

> >

>

[Guest guest]

I assume that you're referring to drawing early retirement and

then disability? So it would apply only to those between 62 and their

retirement age? Under those circumstances, although I would recommend

confirming this with social security, it is my understanding that

once you elect early retirement your benefit is fixed. Therefore,

there would be no way to then switch to disability and get a higher

benefit.

Now, at normal retirement age, disability benefits stay the same

amount but automatically change to retirement benefits. Therefore,

above retirement age there is really no such thing as disability.

As to the horror stories about applying for disability they are true

and they do vary greatly by state. Texas, for instance, has an

exceptionally high initial rejection but then a larger amount

overturned on appeal than most states. Steps are promised to

streamline things but I'll wait until I see them before believing.

Now, when it comes to respiratory problems there are tables of

specific criteria and measurements from PFT's and ABG's. So, unlike

many illnesses it can be more straightforward if you fall below the

ranges in those tables. However, if you don't, then that makes it

inappropriately difficult.

Last, depending on age and other factors, although it can cost you up

to $5300 using attorneys to assist either in initial filings or

appeals may be wise. I was fortunate as I had private disability

insurance too so they paid the attorneys (actually a subsidiary of

their parent company) since the amount received from social security

would reduce their obligation. But I did find out the benefit of

expertise and my claim was approved on the initial filing.

> > > > >

> > > > > Hi everyone. My name is Tina. I have been reading your posts

> > > for

> > > > a

> > > > > while and finally got up the nerve to join in. I was

> diagnosed

> > > > with

> > > > > IPF in April, 2007, by open lung biopsy. I am 41 years old.

I

> > > > have

> > > > > 3 children, 22, 18, and 5. My disease has been labeled

> as " fast

> > > > > progressing " and, therefore, I am no longer able to live on

> my

> > > own

> > > > > and I am living in Ohio with my mother and stepfather. My

> > > youngest

> > > > > child, my son, Kaleb, lives here too. I had to transfer him

> > > from

> > > > > his school in West Virginia (our hometown) to the new

school

> in

> > > > Ohio

> > > > > in November. My husband is a coal miner in West Virginia

and

> he

> > > is

> > > > > still there working 7 days a week. Since my illness, he has

> had

> > > to

> > > > > pick up the slack on everything...including the bills. My

two

> > > > older

> > > > > children (both girls) are in college full-time and live on

> their

> > > > > own. I would love it if they were able to help me, but I

> can't

> > > ask

> > > > > them to give up their lives. I am thankful for my mother

and

> her

> > > > > ability to still care for me. I always thought I would be

the

> > > one

> > > > > to help take care of her, and here we are....not at all

what

> we

> > > > > expected. I have been evaluated at the Cleveland Clinic and

> > > UPMC

> > > > in

> > > > > Pittsburgh for a double lung transplant, however, some other

> > > health

> > > > > problems are keeping me from being listed. Also, I have

> learned

> > > I

> > > > > have a high " antibody " count, which means a compatible match

> > > would

> > > > > be much harder for me than most other people. I also have a

> > > heart

> > > > > defect that has been detected now. So far I have been told

my

> > > > heart

> > > > > is not strong enough for a lung transplant and my lungs are

> not

> > > > > strong enough for a heart operation. I have had my rounds of

> > > > > steroids and Imuran, but there were no changes in my

> condition.

> > > I

> > > > > am, of course, on oxygen full-time at 4 ltr. I go back to

> > > > Cleveland

> > > > > Clinic on January 9th and will, hopefully, have more

> definitive

> > > > > results of all of the testing. My BMI is also a hinderance.

> > > Since

> > > > > I am overweight, and unable to exercise, I watch what I

eat,

> but

> > > do

> > > > > not seem to lose weight. I am 5'5 " and weigh 230 lbs. I

> > > weighed

> > > > > 185 about one year ago - and the weight came on while on the

> > > > > steroids. I have been told they will not do the lung

> transplant

> > > > > until my BMI is below 30. I am at 39 now. I have had 2

> > > > > hospitalizations this year for pneumonia and I am sick now.

I

> > > know

> > > > > if I go to the hopsital I will be admitted, so I am trying

to

> > > self-

> > > > > treat at home. I have my nebulizer fired up every 4 hours. I

> > > > guess

> > > > > the reason I am here is because I am so sad. I feel

terrible,

> > > but

> > > > I

> > > > > thank God for every day that I have here. I have been

blessed

> > > to

> > > > > have a wonderful family. My children are having a hard time

> > > > dealing

> > > > > with me being sick and the inevitable downward spiral I

seem

> to

> > > be

> > > > > on. Thank you for reading my post. I hope to make friends

and

> > > > > receive support from this group.

> > > > >

> > > >

> > >

> >

>

>

>

>

>

>

> ---------------------------------

> Looking for last minute shopping deals? Find them fast with Yahoo!

Search.

>

[Guest guest]



HI

I AM

JOHN PATRICK

THEY ( DOCTOR AT THE VA) FOUND A LUMP ON MY PROSTATE ON APRIL 12. IT WAS

BIOPSIED TO BE POSITIVE FOR PROSTATE CANCER.HOWEVER IT WAS CAUGHT EARLY...SO I HAD SOME CHOICES TO MAKE AFTER TALKING TO ABOUT A MILLION PEOPLE.AT FIRST I JUST WANTED IT OUT OF MY BODY SO I DECIDED ON SUGERY.

THEN WE SPOKE TO AN ONCOLOGIST WHO VERIFIED ALL MY PAPER WORK AND SHE DECIDED THAT THIS CANCER CAN BE KILLED THROUGH RADIATION. MY PSA LEVELS WERE 7.2 AND THE 2ND READING ABOUT A MONTH LATER WAS 8.2. I TALKED TO MANY PEOPLE WHO HAVE HAD THEIR PROSTATE REMOVED AND THEY HIGHLY RECOMMENDED THAT I THINK TWICE ABOUT HAVING IT REMOVED BECAUSE OF ALL THE COMPLICATIONS AFTERWARDS SUCH AS HAVING TO WEAR A DIAPER, ERECTAL DYSFUNCTION, ETC, DR.SHONA DOUGHERTY CAME HIGHLY RECOMMENDED AS ONE OF THE BEST IN THE PROSTATE CANCER FIELD IN TUCSON AZ. MY DOCTOR IS WITH ME FROM STEP 1 THROUGH THE WHOLE PROCESS. SHE HAS A WEBSITE IF YOU WOULD LIKE TO READ WHAT SHE HAS TO SAY. www.rad-onc.arizona.edu

good luck

john patrick

I STARTED RADIATION THIS PAST MONDAY. TODAY IS MY FOURTH DAY OF 39 TREATMENTS. THE ONLY PROBLEM THUSFAR IS FATIGUE.