Re: Show of hands? please?

January 9, 2008

Babs: Good post! Here goes:

I am Tina in Ohio. I was born and raised in Cleveland, but left the

area when I was 22 to move to West Virginia, where my dad was from.

I lived in West Virginia the rest of my life, until November 2007,

when I moved back to Ohio to live with my mom because I couldn't

take care of myself and my 5 year old son, Kaleb, anymore. I still

get around pretty good, but I needed help on a daily basis. I have

2 grown daughters. is 22 and will graduate from the

University of Frostburg (land) with her Bachelor's degree in May

this year! Whooo hooo! Devynn is 18 and will graduate from

Southern High School, Oakland, land, in May this year! Another,

whooo hooo! Devynn will start her college career in the fall at the

University of land at College Park with a focus on an

Engineering degree. She's all brains! She is a 3rd year

participate in the F.I.R.S.T. team of Garrett County, which is a

robotics team sponsored by NASA. They build robots that do stuff

and then battle other robots that do stuff. That's a very brief

explanation. LOL. Their team won at regionals last year and went on

to Nationals where they competed against 100 other teams and they

placed 2nd! Way to go! lives on our family farm property.

We have cows, horses, chickens, rabbits, dogs, cats, had pigs, and

finally got rid of our mean-ass rooster! We have had a great time

being farmers, country folk and living a very practical life. If

that sounds like I am saying we were poor...well - we kinda were,

but we were rich with many other things.

I was diagnosed in April of 2007 after an open lung biopsy, with

IPF. And, if anyone out there has ever had one, let me tell you it

was the most awful pain I have ever endured. In an open lung

biopsy, they have to use a rib spreader to access your lungs and cut

a piece out for biopsy. I knew there were other options, including

VATS, but they were not sure VATS would provide a large enough

sample to accurately obtain diagnostic results. Anyway, I chose the

open lung biopsy, so that I didn't have to go through more than one

process to get my diagnosis. I was so anxious to know exactly what

was wrong with me, because I had not been well for quite some

time....actually, many years. Not knowing what was wrong with me

was almost as bad as knowing. The stress was tremendous. I am glad

I now know what was behind all my problems! I also have coronary

artery disease, thanks to my parents and grandparents and those

before them. I inherited it. I have had one stent placement and it

was done in 2003 when I was 37 years old. One year later, my sister

who is one year older than me, have 5 bypasses. Again, thanks to

our genes! I have also been diagnosed with pulmonary hypertension,

which resulted from the IPF and take medication for that.

I have been married 3 times, but twice to the same person. So does

that count? Anyhoo, our second go round we will have been married

for 2 years in May. He is the father of my 5 year old son. He just

told me recently he wants a divorce because I am the one sick, not

him, and he says he deserves a better life. I refuse to grieve over

that. His judgment day will come and he will have to answer for all

the things he has done in his life. Poor, poor, man.

In my prior life, I was a paralegal. I worked for attorneys for 20

years. I wonder if any investigation has been done to reveal

whether that caused my IPF? Just kidding to all the lawyers out

there! I was a litigation paralegal for a private practice criminal

defense attorney and spent most of my time in court, investigating

or prepping witnesses for court. We also did family law, real

estate, probate and many other types of cases. I loved my job. My

IPF made it hard to continue working, but I quit long before I was

diagnosed. I had quit in May of 2006 due to my many absences. I

had no idea why I was sick all the time. It wasn't asthma, like the

doctors thought, and it wasn't pneumonia, like the doctors thought,

and it wasn't depression, like the doctors thought!

I currently take a long list of prescription medication, but mostly

it is for my heart. I take Effexsor for depression. I take Viagra

for the pulmonary hypertension. I take Plavix, Atenolol, Altace and

aspirin for my heart. I still use my nebulizer occasionally when I

feel too congested and I sometimes use my inhaler, hoping it will

help. I have taken Prednisone and Imuran, but they didn't work for

me. My IPF was very progressed by the time it was diagnosed. I

went straight from the pulmonolgist's office to the lung transplant

team; literally in the same day. I have undergone all of the pre-

transplant evaluations, but I am still not listed. I have to lose

50 more pounds - thank you Prednisone! I am on oxygen at 4 lpm all

the time, and sometimes more with exercise!

As for hobbies, I guess I would have to say, my kids! Kaleb and I

are pals! We love the animals, the outdoors, fishing, hunting,

etc. I do things a lot slower than most people, but I still do

them. I have to - I don't want Kaleb to miss out on growing up

kinda normal! I have my days where I can't even get out of bed, but

in that case, my mom takes over and she is wonderful.

and I are the closest of all. We talk on the phone every day

and before I left West Virginia we would see each other about every

other day. We loved to go shopping and hanging out. We even went

bar hopping together! She loved hanging out with me. We have had

lots of good times - even trips to WalMart became adventures for

us. Sometimes, just for giggles, we would even pose on Wal Mart

furniture for pictures. We took our digital cameras with us

everywhere! I could go on and on about her. She was my first, she

is my best friend.

Devynn has lived with her dad since she was 11. He is a wonderful

man and has raised her very well. We are still very close and I

love her dearly, but I feel she grew up without me. I miss her so

much and I feel she is the one who needs me the most. She is the

one who holds it all in and has a hard time dealing with me being

sick. She cries everytime we are together. I am hopeful she will

spend the summer with me this year after graduation and before she

goes off to college.

Well, I know I have told you all way more than you wanted to know,

but I love this group!

Tina

IPF/April 07/Ohio

>

> Not meaning to be presumptuous, or step on Leanne's toes, but

would

> it be possible to have a show of hands? I'm fairly new here and

still

> trying to figure folks out, and I know there have been quite a few

> join since I did....soooo.....please? Here's my hand up:

>

> Babs in Texas Central Texas, near Austin for the past 27 years,

> but I'm a Native Californian. This makes me a Texi-Cali girl.

> Age: 47

> Married to Chaz since 1984, my second hubby but totally the best!

> One child, a grown daughter, h, age 27 who lives on our

property

> in her own home and is the joy of my life

> 5 dogs, that I adore

> Sister to many, Auntie B to several munchkins that are my heart

> In my past life I graduated from business college in San

and

> worked in a bank before meeting Chaz and helping him run his

> convenience store/pizza parlor/game room and paddle boat

concession

> at the State Park. I also had a band for 5 years and was the

female

> lead vocalist. Chaz is a master electrician with his own business.

>

> Diagnosed with PF due to lupus/scleroderma in Nov. 1999 though am

> now told it could be IPF.

> Diagnosis was made via bronchoscopy with lavage, and CT's and PFT's

> Also have rheumatoid arthritis, sjogren's, raynaud's,

> dermatamyositis, fibromyalgia and crohn's. maybe more, can't

remember

> due to lupus brain fog '

> I currently take only Aleve and Darvocet, plus a multi-vitamin,

NAC,

> and will begin using fish oil along with a few other supplements

> tomorrow. Am on O2 at 2 lpm upon exertion

> I have used in the past: Cytoxan, Imuran, Cellcept, Plaquenil and

of

> course Prednisone

> My hobbies are reading (murder mysteries and paranormal),

collecting

> and selling costume jewelry, collecting paintings, and gardening

when

> I can. I love colorful flowers, but especially roses.

> I root for the UT Longhorns and the Dallas Cowboys and also the

> Tennesee Titans since Vince Young became Quarterback.

> I'm described as goofy and silly, kind, caring and occasionally as

> impatient. Chaz says I'm a witch but I'm not sure he means that in

a

> good way...hmmmmmm. gotta think about that one....

> My motto is " I have PF, but it does NOT have me "

>

> Next........?

>

January 11, 2008

Bruce: I had my son when I was 36 years old. To say the least, I

had a very hard pregnancy with numerous complications. He is also

my miracle child. He is 5 years old now and his sisters are 22 and

18. They are grown and I was a good mom, but...truthfully....as a

more mature mother with my son, I have definitely enjoyed him more,

and been a better mom. We are like peanut butter and jelly - we

just go together so well. Kids are wonderful and I love hearing

about your daughter. I remember Kaleb at that age and he could make

a terrible day brighter with just a little smile! Kids love being

happy and they are like sponges - they just take everything in. I

often called Kaleb my little " SpongeBob " . Take care, and thanks for

sharing with us.

Tina

IPF/April 07/Ohio

>

> Brett, My mom died March 15, 2006 of lung cancer ( she never

smoked) and I still cry just mentioning her name or seeing,

smelling, or hearing something that reminds me of her. I miss her

so much and like you often stop by her grave. Thank you for sharing

your story. Your little is truly a miracle. God bless

you and your family-

>

> Sarcoid/PF 3/2006 California

>

> Show of hands? please?

>

> well here you all go ((big breath))

>

> Im 40-yrs. old Im married my wife's name is mistie we went out

when I was a senior in high school (1985)

> I broke it off and we went our separate way's , until 17 yrs.

later when my sister and her sister went to there class reunion

> and her sister asked what I had been up to , my sister gave her my

phone number which in turn she gave to mistie

> she then called me the following monday, left a message on my

machine saying to call if I wanted to catch up

> so I did and we then talked every day after.

>

> we got married two years ago. she has three kids from the

previous (abusive) marriage

> so it was an instant family , we had our first baby together

january 14 2007 the best day of my life

> she was our miracle baby ,, because when my wife was about 6-

months along

> she woke up in the middle of the night with severe cramping, she

went to the bathroom and found she was

> bleeding , she woke me and said I think I had miscarriage

> we called here OB and she said get to the ER

> when we got there the doctor gave her a pelvic exam and ultra

sound he then told us

> It looks as though you are in the early stages of a miscarriage

because he said he saw part of the placenta

> during the pelvic exam.

>

> we were devastated we sat and cried , the doctor came in and said

they had scheduled a d & c

> to remove the fetus . we cried some more and told the doctor that

we were not going to do anything as

> long as the baby had a heart beat. so we waited in that room for

about an hour when In walked her OB

> she talked to us and we explained what had happened she then did

all of the exams again and said that

> the baby had way to good of a heartbeat to be in distress and that

the so called placenta the doctor saw was actually

> a polyp that had burst . everything after that day was worrisome

but on jan. 14 she was born, 3-weeks premature

> but healthy . Yes Im probably a big sap because I cried In the

delivery room and in the waiting room with my family.

> she spent two weeks in the hospital and then finally came home

> I still remember going to the hospital every morning at 5:00 am

before work to feed her and thinking I never imagined loving

> someone so much (she is definitely touched by god)

> we named her elizabeth after my mother, who died of IPF 3-yrs ago

I never new anything about this disease until she was sick

> then I wanted to know everything,

> she was in and out of the hospital for a few years OHHH! the ups

and downs

> she received her transplant just in time, the strain on her heart

was getting to much and her lungs were really bad

> she recovered from the surgery slowly but when she recovered she

was walking all over the place no O2 at all hardly

> it was really looking good and for one good year she was great

> then It all started going down hill ,,,all over again

> she was in and out of the hospital again with pneumonia and then

the rejection started

> she was on sooo many pills she had to literally carry them around

in like a toolbox

> she passed away six months later

>

> that was the saddest day of my life

> the whole time she had this disease she never once complained

> always always upbeat ,even though we could tell she was really

suffering

> watching someone you love slowly day by day slip away was soooo

hard

> but I wanted to spend as much time with her as I could

> I would go to my mom and dad's house every day in the afternoon I

would eat lunch with her and then in the evening

> I would stop by just to say goodnight... . now I stop at the

cemetery every night on my way home from work to say I LOVE YOU

> and goodnight .I MISS HER SO VERY MUCH

>

> I have to change the subject I am having a hard time with this

(can't cry at work)

>

> I am an identical triplet , which a lot of people seem to think is

so cool , (did you switch classes , girlfriends etc.)

> It's not all that great and no we did not . I found my self trying

to be my own person so I did a lot of things to stand out , just be

different

> not grouped with my brother's all the time . that's probably why I

grew my hair long and got a lot of tattoos ,just to be different.

> I guess as we got older we grew closer together and now I like to

do a lot of thing's with them and they often come over to my house

> all though I think it is just to see elizabeth

>

> my hobbies are snowboarding and golf

> I work in screen printing have been in the business for about 20

yrs

>

> I live in rockford MI. (about three hours west of detroit)

>

> I was dx in nov. 07 with familial IPF

> I am not on O2

> my PFT numbers show a mild restriction and decreased diffusing

capacity

> the last test's I had (ct, pft, 6min walk) were in september

> my doctor wanted some new test's done but he said if I was going

to participate in this new study coming up (nac,prednisone, imuran)

> I should just wait till It starts, because all those test's will

be free

> so there you have a little slice of my life NEXT!!

>

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January 11, 2008

I meant Brett - not Bruce...geez Bruce you must be on my mind!

Tina

IPF/April 07/Ohio

> >

> > Brett, My mom died March 15, 2006 of lung cancer ( she never

> smoked) and I still cry just mentioning her name or seeing,

> smelling, or hearing something that reminds me of her. I miss her

> so much and like you often stop by her grave. Thank you for

sharing

> your story. Your little is truly a miracle. God bless

> you and your family-

> >

> > Sarcoid/PF 3/2006 California

> >

> > Show of hands? please?

> >

> > well here you all go ((big breath))

> >

> > Im 40-yrs. old Im married my wife's name is mistie we went out

> when I was a senior in high school (1985)

> > I broke it off and we went our separate way's , until 17 yrs.

> later when my sister and her sister went to there class reunion

> > and her sister asked what I had been up to , my sister gave her

my

> phone number which in turn she gave to mistie

> > she then called me the following monday, left a message on my

> machine saying to call if I wanted to catch up

> > so I did and we then talked every day after.

> >

> > we got married two years ago. she has three kids from the

> previous (abusive) marriage

> > so it was an instant family , we had our first baby together

> january 14 2007 the best day of my life

> > she was our miracle baby ,, because when my wife was about 6-

> months along

> > she woke up in the middle of the night with severe cramping, she

> went to the bathroom and found she was

> > bleeding , she woke me and said I think I had miscarriage

> > we called here OB and she said get to the ER

> > when we got there the doctor gave her a pelvic exam and ultra

> sound he then told us

> > It looks as though you are in the early stages of a miscarriage

> because he said he saw part of the placenta

> > during the pelvic exam.

> >

> > we were devastated we sat and cried , the doctor came in and

said

> they had scheduled a d & c

> > to remove the fetus . we cried some more and told the doctor

that

> we were not going to do anything as

> > long as the baby had a heart beat. so we waited in that room for

> about an hour when In walked her OB

> > she talked to us and we explained what had happened she then did

> all of the exams again and said that

> > the baby had way to good of a heartbeat to be in distress and

that

> the so called placenta the doctor saw was actually

> > a polyp that had burst . everything after that day was

worrisome

> but on jan. 14 she was born, 3-weeks premature

> > but healthy . Yes Im probably a big sap because I cried In the

> delivery room and in the waiting room with my family.

> > she spent two weeks in the hospital and then finally came home

> > I still remember going to the hospital every morning at 5:00 am

> before work to feed her and thinking I never imagined loving

> > someone so much (she is definitely touched by god)

> > we named her elizabeth after my mother, who died of IPF 3-yrs

ago

> I never new anything about this disease until she was sick

> > then I wanted to know everything,

> > she was in and out of the hospital for a few years OHHH! the

ups

> and downs

> > she received her transplant just in time, the strain on her

heart

> was getting to much and her lungs were really bad

> > she recovered from the surgery slowly but when she recovered she

> was walking all over the place no O2 at all hardly

> > it was really looking good and for one good year she was great

> > then It all started going down hill ,,,all over again

> > she was in and out of the hospital again with pneumonia and then

> the rejection started

> > she was on sooo many pills she had to literally carry them

around

> in like a toolbox

> > she passed away six months later

> >

> > that was the saddest day of my life

> > the whole time she had this disease she never once complained

> > always always upbeat ,even though we could tell she was really

> suffering

> > watching someone you love slowly day by day slip away was soooo

> hard

> > but I wanted to spend as much time with her as I could

> > I would go to my mom and dad's house every day in the afternoon

I

> would eat lunch with her and then in the evening

> > I would stop by just to say goodnight... . now I stop at the

> cemetery every night on my way home from work to say I LOVE YOU

> > and goodnight .I MISS HER SO VERY MUCH

> >

> > I have to change the subject I am having a hard time with this

> (can't cry at work)

> >

> > I am an identical triplet , which a lot of people seem to think

is

> so cool , (did you switch classes , girlfriends etc.)

> > It's not all that great and no we did not . I found my self

trying

> to be my own person so I did a lot of things to stand out , just

be

> different

> > not grouped with my brother's all the time . that's probably why

I

> grew my hair long and got a lot of tattoos ,just to be different.

> > I guess as we got older we grew closer together and now I like

to

> do a lot of thing's with them and they often come over to my house

> > all though I think it is just to see elizabeth

> >

> > my hobbies are snowboarding and golf

> > I work in screen printing have been in the business for about 20

> yrs

> >

> > I live in rockford MI. (about three hours west of detroit)

> >

> > I was dx in nov. 07 with familial IPF

> > I am not on O2

> > my PFT numbers show a mild restriction and decreased diffusing

> capacity

> > the last test's I had (ct, pft, 6min walk) were in september

> > my doctor wanted some new test's done but he said if I was going

> to participate in this new study coming up (nac,prednisone, imuran)

> > I should just wait till It starts, because all those test's will

> be free

> > so there you have a little slice of my life NEXT!!

> >

> > <!--

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>

_____________________________________________________________________

> _______________

> > Be a better friend, newshound, and

> > know-it-all with Yahoo! Mobile. Try it now.

> http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

> >

>

January 11, 2008

Tina

That's dangerous....lol

Everytime you mention him, I can just feel the love between you and

Kaleb.

> > >

> > > Brett, My mom died March 15, 2006 of lung cancer ( she never

> > smoked) and I still cry just mentioning her name or seeing,

> > smelling, or hearing something that reminds me of her. I miss

her

> > so much and like you often stop by her grave. Thank you for

> sharing

> > your story. Your little is truly a miracle. God bless

> > you and your family-

> > >

> > > Sarcoid/PF 3/2006 California

> > >

> > > Show of hands? please?

> > >

> > > well here you all go ((big breath))

> > >

> > > Im 40-yrs. old Im married my wife's name is mistie we went out

> > when I was a senior in high school (1985)

> > > I broke it off and we went our separate way's , until 17 yrs.

> > later when my sister and her sister went to there class reunion

> > > and her sister asked what I had been up to , my sister gave her

> my

> > phone number which in turn she gave to mistie

> > > she then called me the following monday, left a message on my

> > machine saying to call if I wanted to catch up

> > > so I did and we then talked every day after.

> > >

> > > we got married two years ago. she has three kids from the

> > previous (abusive) marriage

> > > so it was an instant family , we had our first baby together

> > january 14 2007 the best day of my life

> > > she was our miracle baby ,, because when my wife was about 6-

> > months along

> > > she woke up in the middle of the night with severe cramping,

she

> > went to the bathroom and found she was

> > > bleeding , she woke me and said I think I had miscarriage

> > > we called here OB and she said get to the ER

> > > when we got there the doctor gave her a pelvic exam and ultra

> > sound he then told us

> > > It looks as though you are in the early stages of a miscarriage

> > because he said he saw part of the placenta

> > > during the pelvic exam.

> > >

> > > we were devastated we sat and cried , the doctor came in and

> said

> > they had scheduled a d & c

> > > to remove the fetus . we cried some more and told the doctor

> that

> > we were not going to do anything as

> > > long as the baby had a heart beat. so we waited in that room

for

> > about an hour when In walked her OB

> > > she talked to us and we explained what had happened she then

did

> > all of the exams again and said that

> > > the baby had way to good of a heartbeat to be in distress and

> that

> > the so called placenta the doctor saw was actually

> > > a polyp that had burst . everything after that day was

> worrisome

> > but on jan. 14 she was born, 3-weeks premature

> > > but healthy . Yes Im probably a big sap because I cried In the

> > delivery room and in the waiting room with my family.

> > > she spent two weeks in the hospital and then finally came home

> > > I still remember going to the hospital every morning at 5:00 am

> > before work to feed her and thinking I never imagined loving

> > > someone so much (she is definitely touched by god)

> > > we named her elizabeth after my mother, who died of IPF 3-yrs

> ago

> > I never new anything about this disease until she was sick

> > > then I wanted to know everything,

> > > she was in and out of the hospital for a few years OHHH! the

> ups

> > and downs

> > > she received her transplant just in time, the strain on her

> heart

> > was getting to much and her lungs were really bad

> > > she recovered from the surgery slowly but when she recovered

she

> > was walking all over the place no O2 at all hardly

> > > it was really looking good and for one good year she was great

> > > then It all started going down hill ,,,all over again

> > > she was in and out of the hospital again with pneumonia and

then

> > the rejection started

> > > she was on sooo many pills she had to literally carry them

> around

> > in like a toolbox

> > > she passed away six months later

> > >

> > > that was the saddest day of my life

> > > the whole time she had this disease she never once complained

> > > always always upbeat ,even though we could tell she was really

> > suffering

> > > watching someone you love slowly day by day slip away was soooo

> > hard

> > > but I wanted to spend as much time with her as I could

> > > I would go to my mom and dad's house every day in the afternoon

> I

> > would eat lunch with her and then in the evening

> > > I would stop by just to say goodnight... . now I stop at the

> > cemetery every night on my way home from work to say I LOVE YOU

> > > and goodnight .I MISS HER SO VERY MUCH

> > >

> > > I have to change the subject I am having a hard time with this

> > (can't cry at work)

> > >

> > > I am an identical triplet , which a lot of people seem to think

> is

> > so cool , (did you switch classes , girlfriends etc.)

> > > It's not all that great and no we did not . I found my self

> trying

> > to be my own person so I did a lot of things to stand out , just

> be

> > different

> > > not grouped with my brother's all the time . that's probably

why

> I

> > grew my hair long and got a lot of tattoos ,just to be different.

> > > I guess as we got older we grew closer together and now I like

> to

> > do a lot of thing's with them and they often come over to my house

> > > all though I think it is just to see elizabeth

> > >

> > > my hobbies are snowboarding and golf

> > > I work in screen printing have been in the business for about

20

> > yrs

> > >

> > > I live in rockford MI. (about three hours west of detroit)

> > >

> > > I was dx in nov. 07 with familial IPF

> > > I am not on O2

> > > my PFT numbers show a mild restriction and decreased diffusing

> > capacity

> > > the last test's I had (ct, pft, 6min walk) were in september

> > > my doctor wanted some new test's done but he said if I was

going

> > to participate in this new study coming up (nac,prednisone,

imuran)

> > > I should just wait till It starts, because all those test's

will

> > be free

> > > so there you have a little slice of my life NEXT!!

> > >

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>

_____________________________________________________________________

> > _______________

> > > Be a better friend, newshound, and

> > > know-it-all with Yahoo! Mobile. Try it now.

> > http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

> > >

> >

>

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