Re: cheyenne195959@...

April 13, 2008

Gayleen,

Welcome!! Boy you have been through it my friend haven't you? You've been through it and then some. It makes me feel like a whiny baby when I read a story like yours. Actually what it does is help me keep my perspective and remember how fortunate I am to still be here and be stable.

There is one person that I'm aware of on the board who is currently on Flolan. Joyce has been on it for several weeks and it seems to be helping though I'm sure she'll tell you her adjustment to it was fairly miserable. I don't know of anyone who is on Remodulin. Are you still on it? I'm not familiar with Letarisis, perhaps someone else will be.

I'm not sure what your financial situation is but if you run into a problem with paying for prescriptions (like you did with the insulin) you can get in touch with the Caring Voice Coalition or www.caringvoice.org. They are brilliant at finding resources and programs and finanacial assistance for people like us with serious chronic illness.

Gayleen I'm happy to welcome you here, though very sorry you have reason to join us. This is probably the best group of people on the planet. I've been part of this group for going on 2 years now and my life is so very much better than it would have been had I not found these folks.

You are among friends!

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

cheyenne195959@...

Hello Group,

I have just joined and from reading a few of your digests, think I have come home: )

I hope everyone is doing well today and stable. To introduce myself, my name is Gayleen, 48 years old, never smoked (every nurse and doctor asks that!) and have been grappling with IPF since Christmas 2001. I think I fit the normal pattern, a few pneumonia's before the season and I fell into respiratory distress on Christmas eve. I woke up on life support on Feb. 20. The doctors had to resuscitate me four times so they induced a coma. My family had been gathered to say their goodbyes because it was thought I would not live. My daugthers were 14 and 16. My heart bleeds that they had to experience that pain. Over time this was to happen so many times, that they knew I'd come back even when the doctors said 2% in 100. I was on the ventilator

for another month and half. Then a month in rehab, where I talked again, walked again(how painful that was) and regained most of my memory.I left Baylor Hospital in Texas on 80 pred and 3L oxygen 24/7. My sixteen year old Mirelle, went from being a teen in high school with their little cares to changing my port a potty, giving me insulin shots, helping me sort the 15 pills I was taking and running our house. My ex-husband drove from California and picked up my 14 year old, on the grounds I was too sick to care for her. Mirelle refused to go with him. I continued to visit the lung specialist and continued to crash, coughing up blood and gasping for air. I rode the ambulance too often. I was still trying to work, dragging my cannisters into the office and trying to have a phone discussion without coughing the whole time. After another lenghty hosital stay

I lost my job. Six months later the company went out of business. Everyone there was like family and that hurt alot.

It also meant I had no insurance. At that time my ex file for custody of my youngest daugther and I had to appear in court in California to fight it. I was relatively stable and was driven to CA, 8 large cannisters a few small, refilled in Arizona, but i arrived in ca in insulin shock(I couldn't afford it) Fell into a diabetic coma for a week in a hospital outside of Victorville. I missed the court appearance. Recovered from that and was relatively stable for months, then it starts up again, pneumonia's ect.

After a few different ineffective doctors I found Dr Lugiania at St marys in Long beach and he helps me thru 3 ICU events and recommends I see DR Saggar at UCLA. After being in ICU at ucla, I awake to find I have a Floland Inplant, the worst medication in the world, thank God I only had it two days before they put in

a Remodulin implant an experimental med for pulmonary hypertension. Did I mention I had agreed to be a guinea pig? I had days left in my life expectancy and now I have months according to the Experts... but I have my own plan and that is to keep on going. Now they want me to take a pill called Letarisis , anyone have experience with that? I am on 4L 24/7 down to 10 pred but feeling the need for more. Just started losing my hair this year. Haven't been off of pred since 2002, was wondering what was messing with my sunny mood? Just got out of a 2 month stay in the hospital and am moving so ssssslow. wonder if I'll ever be "me"again.

Hope this wasn't too much, it feels good to write it down for some reason.

Thanks, Gayleen

____________ _________ _________ _________ _________ __

April 13, 2008

Gayleen

I also welcome you and am so glad you felt comfortable opening up to us.

We're here for whatever your support needs are and certainly understand

the need to just let it all out.

You've been through more than I can possibly comprehend at this point,

but the one thing I would ask of you is read from some of our more

advanced members and you'll see posts periodically just like yours but

then you'll see such beauty and warmth and how they are finding ways to

be " me " . Now " me " isn't physically how they once were and is emotionally

more fragile, but they are still beautiful and finding ways to

experience the good of life in spite of the obstacles. It's often

through reading them that I prepare mentally for my future. When I see

their pain, it scares me. However, when I see the love of life, the

beauty of their inner selves, the spark thats still there, I make mental

notes so hopefully by the time I do get there I have the strength to

follow my role models.

>

> Gayleen,

> Welcome!! Boy you have been through it my friend haven't you? You've

been through it and then some. It makes me feel like a whiny baby when I

read a story like yours. Actually what it does is help me keep my

perspective and remember how fortunate I am to still be here and be

stable.

> There is one person that I'm aware of on the board who is currently on

Flolan. Joyce has been on it for several weeks and it seems to be

helping though I'm sure she'll tell you her adjustment to it was fairly

miserable. I don't know of anyone who is on Remodulin. Are you still on

it? I'm not familiar with Letarisis, perhaps someone else will be.

> I'm not sure what your financial situation is but if you run into a

problem with paying for prescriptions (like you did with the insulin)

you can get in touch with the Caring Voice Coalition or

www.caringvoice.org. They are brilliant at finding resources and

programs and finanacial assistance for people like us with serious

chronic illness.

> Gayleen I'm happy to welcome you here, though very sorry you have

reason to join us. This is probably the best group of people on the

planet. I've been part of this group for going on 2 years now and my

life is so very much better than it would have been had I not found

these folks.

> You are among friends!

>

> Beth

> Age 48 Fibrotic NSIP 06/06

>

> Change everything. Love and Forgive

>

> cheyenne195959@...

>

> Hello Group,

> I have just joined and from reading a few of your digests, think I

have come home: )

> I hope everyone is doing well today and stable. To introduce myself,

my name is Gayleen, 48 years old, never smoked (every nurse and doctor

asks that!) and have been grappling with IPF since Christmas 2001. I

think I fit the normal pattern, a few pneumonia's before the season and

I fell into respiratory distress on Christmas eve. I woke up on life

support on Feb. 20. The doctors had to resuscitate me four times so they

induced a coma. My family had been gathered to say their goodbyes

because it was thought I would not live. My daugthers were 14 and 16. My

heart bleeds that they had to experience that pain. Over time this was

to happen so many times, that they knew I'd come back even when the

doctors said 2% in 100. I was on the ventilator

> for another month and half. Then a month in rehab, where I talked

again, walked again(how painful that was) and regained most of my

memory.I left Baylor Hospital in Texas on 80 pred and 3L oxygen 24/7. My

sixteen year old Mirelle, went from being a teen in high school with

their little cares to changing my port a potty, giving me insulin shots,

helping me sort the 15 pills I was taking and running our house. My

ex-husband drove from California and picked up my 14 year old, on the

grounds I was too sick to care for her. Mirelle refused to go with him.

I continued to visit the lung specialist and continued to crash,

coughing up blood and gasping for air. I rode the ambulance too often. I

was still trying to work, dragging my cannisters into the office and

trying to have a phone discussion without coughing the whole time. After

another lenghty hosital stay I lost my job. Six months later the company

went out of business. Everyone there was like

> family and that hurt alot.

> It also meant I had no insurance. At that time my ex file for custody

of my youngest daugther and I had to appear in court in California to

fight it. I was relatively stable and was driven to CA, 8 large

cannisters a few small, refilled in Arizona, but i arrived in ca in

insulin shock(I couldn't afford it) Fell into a diabetic coma for a week

in a hospital outside of Victorville. I missed the court appearance.

Recovered from that and was relatively stable for months, then it starts

up again, pneumonia's ect.

> After a few different ineffective doctors I found Dr Lugiania at St

marys in Long beach and he helps me thru 3 ICU events and recommends I

see DR Saggar at UCLA. After being in ICU at ucla, I awake to find I

have a Floland Inplant, the worst medication in the world, thank God I

only had it two days before they put in

> a Remodulin implant an experimental med for pulmonary hypertension.

Did I mention I had agreed to be a guinea pig? I had days left in my

life expectancy and now I have months according to the Experts... but I

have my own plan and that is to keep on going. Now they want me to take

a pill called Letarisis , anyone have experience with that? I am on 4L

24/7 down to 10 pred but feeling the need for more. Just started losing

my hair this year. Haven't been off of pred since 2002, was wondering

what was messing with my sunny mood? Just got out of a 2 month stay in

the hospital and am moving so ssssslow. wonder if I'll ever be

" me " again.

> Hope this wasn't too much, it feels good to write it down for some

reason.

> Thanks, Gayleen

>

> ____________ _________ _________ _________ _________ __

>

April 13, 2008

Hi Gayleen,

Wow! I am so happy to meet someone who has experienced acute respiratory syndrome as I have. Did you have a trach? I am so sorry that you have had some horrific experiences but now it seems you are on the right track with the doctors you now have. And you have a strong will to live. I know your two daughters are your inspiration. I have a daughter, who is now 25 years old, graduated from college & looking for a job. I was very ill during her 3rd year of college. I was hospitalized for 6 months in a row in 4 different hospitals and I, too, had to learn how to walk, talk, eat, think, etc. Everything really. I was terrified of learning to walk. I had to give myself pep talks. A therapist gave me a CAN of cards that was called "The I CAN" Can. I scrunized those cards in my room everyday before the horrible physical therapy. Now I look back and I am eternally grateful to the therapists who helped me. I have even gone back and seen them. Now I don't suffer from pulmonary hypertension but I have UIP/IPF. I am on 3-3.5 liters of O2 continous, and 4 liters on demand and moving around or exercising. When I am resting, 2.5 liters demand is adequate. My experience has really affected my daughter, mainly because she is one to keep thoughts and feelings to herself and not talk to anyone. We are very close and when I was on the vent for so long, she did not have me to chat. This problem is one that we are still working to resolve even now. She is coming out of herself. Last weekend, I drove to visit her in Nashville, TN and we had fun just hanging out. While I was on the vent, would sing, talk, etc. to me all she could. I still have some memories of events that happened to me. Basically I was "asleep" from June 26th to the middle of October, 2004. On December 22, 2004, I went home. I am sorry that your ex-husband is no longer in the picture for you. I know it is hard for you. Do you have any other family besides your daughters? I am praying for you and look forward to anything else you want to ask or tell us about you. We are all here for each other and glad that you are HERE!

Toodles!

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl> >> > Gayleen,> > Welcome!! Boy you have been through it my friend haven't you? You've> been through it and then some. It makes me feel like a whiny baby when I> read a story like yours. Actually what it does is help me keep my> perspective and remember how fortunate I am to still be here and be> stable.> > There is one person that I'm aware of on the board who is currently on> Flolan. Joyce has been on it for several weeks and it seems to be> helping though I'm sure she'll tell you her adjustment to it was fairly> miserable. I don't know of anyone who is on Remodulin. Are you still on> it? I'm not familiar with Letarisis, perhaps someone else will be.> > I'm not sure what your financial situation is but if you run into a> problem with paying for prescriptions (like you did with the insulin)> you can get in touch with the Caring Voice Coalition or> www.caringvoice.org. They are brilliant at finding resources and> programs and finanacial assistance for people like us with serious> chronic illness.> > Gayleen I'm happy to welcome you here, though very sorry you have> reason to join us. This is probably the best group of people on the> planet. I've been part of this group for going on 2 years now and my> life is so very much better than it would have been had I not found> these folks.> > You are among friends!> >> > Beth> > Age 48 Fibrotic NSIP 06/06> >> > Change everything. Love and Forgive> >> >> >> >> >> > cheyenne195959@> >> > Hello Group,> > I have just joined and from reading a few of your digests, think I> have come home: )> > I hope everyone is doing well today and stable. To introduce myself,> my name is Gayleen, 48 years old, never smoked (every nurse and doctor> asks that!) and have been grappling with IPF since Christmas 2001. I> think I fit the normal pattern, a few pneumonia's before the season and> I fell into respiratory distress on Christmas eve. I woke up on life> support on Feb. 20. The doctors had to resuscitate me four times so they> induced a coma. My family had been gathered to say their goodbyes> because it was thought I would not live. My daugthers were 14 and 16. My> heart bleeds that they had to experience that pain. Over time this was> to happen so many times, that they knew I'd come back even when the> doctors said 2% in 100. I was on the ventilator> > for another month and half. Then a month in rehab, where I talked> again, walked again(how painful that was) and regained most of my> memory.I left Baylor Hospital in Texas on 80 pred and 3L oxygen 24/7. My> sixteen year old Mirelle, went from being a teen in high school with> their little cares to changing my port a potty, giving me insulin shots,> helping me sort the 15 pills I was taking and running our house. My> ex-husband drove from California and picked up my 14 year old, on the> grounds I was too sick to care for her. Mirelle refused to go with him.> I continued to visit the lung specialist and continued to crash,> coughing up blood and gasping for air. I rode the ambulance too often. I> was still trying to work, dragging my cannisters into the office and> trying to have a phone discussion without coughing the whole time. After> another lenghty hosital stay I lost my job. Six months later the company> went out of business. Everyone there was like> > family and that hurt alot.> > It also meant I had no insurance. At that time my ex file for custody> of my youngest daugther and I had to appear in court in California to> fight it. I was relatively stable and was driven to CA, 8 large> cannisters a few small, refilled in Arizona, but i arrived in ca in> insulin shock(I couldn't afford it) Fell into a diabetic coma for a week> in a hospital outside of Victorville. I missed the court appearance.> Recovered from that and was relatively stable for months, then it starts> up again, pneumonia's ect.> > After a few different ineffective doctors I found Dr Lugiania at St> marys in Long beach and he helps me thru 3 ICU events and recommends I> see DR Saggar at UCLA. After being in ICU at ucla, I awake to find I> have a Floland Inplant, the worst medication in the world, thank God I> only had it two days before they put in> > a Remodulin implant an experimental med for pulmonary hypertension.> Did I mention I had agreed to be a guinea pig? I had days left in my> life expectancy and now I have months according to the Experts... but I> have my own plan and that is to keep on going. Now they want me to take> a pill called Letarisis , anyone have experience with that? I am on 4L> 24/7 down to 10 pred but feeling the need for more. Just started losing> my hair this year. Haven't been off of pred since 2002, was wondering> what was messing with my sunny mood? Just got out of a 2 month stay in> the hospital and am moving so ssssslow. wonder if I'll ever be> "me"again.> > Hope this wasn't too much, it feels good to write it down for some> reason.> > Thanks, Gayleen> >> > ____________ _________ _________ _________ _________ __> >

April 13, 2008

Gayleen, Welcome to the best "air family"

I'm sorry that you need us but you have found the right place.

You have this group now for support, laughs, tears, and ranting of any

kind.

You have certainly been through the wringer!!!

Your post sounds as if you are a very strong and determined girl...yes

girl..I'm 64.

Ask questions and someone here will have the answer or find it for you.

I hope this Sunday is sunny and that you are having a brighter day.

Again, welcome newbie!

Z fibriotic NSIP/05

Z 64,

fibriotic NSIP/o5/PA

And “mild”

PH/10/07 and Reynaud’s

too!!

No, NSIP was not

self-inflicted…I never smoked!

Potter,

reader,carousel lover and

MomMom to

Darah

and Sara

“I’m

gonna

be iron like a lion in Zion” Bob Marley

Gayleen Aguayo wrote:

Hello

Group,

I

have just joined and from reading a few of your digests, think I have

come home: )

I hope

everyone is doing well today and stable. To introduce myself, my name

is Gayleen, 48 years old, never smoked (every nurse and doctor asks

that!) and have been grappling with IPF since Christmas 2001. I think

I fit the normal pattern, a few pneumonia's before the season and I

fell into respiratory distress on Christmas eve. I woke up on life

support on Feb. 20. The doctors had to resuscitate me four times so

they induced a coma. My family had been gathered to say their goodbyes

because it was thought I would not live. My daugthers were 14 and 16.

My heart bleeds that they had to experience that pain. Over time this

was to happen so many times, that they knew I'd come back even when the

doctors said 2% in 100. I was on the ventilator

for

another month and half. Then a month in rehab, where I talked again,

walked again(how painful that was) and regained most of my memory.I

left Baylor Hospital in Texas on 80 pred and 3L oxygen 24/7. My

sixteen year old Mirelle, went from being a teen in high school with

their little cares to changing my port a potty, giving me insulin

shots, helping me sort the 15 pills I was taking and running our house.

My ex-husband drove from California and picked up my 14 year old, on

the grounds I was too sick to care for her. Mirelle refused to go with

him. I continued to visit the lung specialist and continued to crash,

coughing up blood and gasping for air. I rode the ambulance too often.

I was still trying to work, dragging my cannisters into the office and

trying to have a phone discussion without coughing the whole time.

After another lenghty hosital stay I lost my job. Six months later

the company went out of business. Everyone there was like family and

that hurt alot.

It

also meant I had no insurance. At that time my ex file for custody of

my youngest daugther and I had to appear in court in California to

fight it. I was relatively stable and was driven to CA, 8 large

cannisters a few small, refilled in Arizona, but i arrived in ca in

insulin shock(I couldn't afford it) Fell into a diabetic coma for a

week in a hospital outside of Victorville. I missed the court

appearance. Recovered from that and was relatively stable for months,

then it starts up again, pneumonia's ect.

After

a few different ineffective doctors I found Dr Lugiania at St marys in

Long beach and he helps me thru 3 ICU events and recommends I see DR

Saggar at UCLA. After being in ICU at ucla, I awake to find I have a

Floland Inplant, the worst medication in the world, thank God I only

had it two days before they put in

a

Remodulin implant an experimental med for pulmonary hypertension. Did

I mention I had agreed to be a guinea pig? I had days left in my life

expectancy and now I have months according to the Experts... but I have

my own plan and that is to keep on going. Now they want me to take a

pill called Letarisis , anyone have experience with that? I am on 4L

24/7 down to 10 pred but feeling the need for more. Just started

losing my hair this year. Haven't been off of pred since 2002, was

wondering what was messing with my sunny mood? Just got out of a 2

month stay in the hospital and am moving so ssssslow. wonder if I'll

ever be "me"again.

Hope

this wasn't too much, it feels good to write it down for some reason.

Thanks,

Gayleen

__________________________________________________

April 13, 2008

Gayleen...Oh I'm glad you feel as though you've come home! Indeed you have, although there are few of us who have been where you have! Our Joyce comes to mind and I'm sure she will reply. She is going into the hospital tomorrow. (As Beth said, she is on Flolan too.) Janine was on "Chat" Thursday and said she "is as bad as Joyce" but she doesn't post enough to keep up with her condition....

Anyway. I can't even imagine what you have been through. And your kids! That is so tough to watch our kids play out our problems. Did your ex get custody of the younger one because you couldn't make the court appearance?

Thank God you have Mirelle. Since you are no longer married you MUST have help. Yes, it's a lot for her but sounds like she is doing it!

Learning to walk, etc. crashing numerous times, your husband going for custody, on and on. Gayleen you are a miracle!

I'm surprised you "lost" your job. I didn't think a person in your condition could be "fired" and left w/ no insurance. Is there anyone who can look into this for you??

Do you have parents close by?

Are you saying it's mainly you and Mirelle dealing with all of this?

Please know you are instantly in our prayers (the board). We've got a few prayer-warriors here and I know Peggy will put you in her "Prayer Box".

Do come back and share w/us and let us support you.

A big warm Mama-hug for you and Mirelle!

Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there!

cheyenne195959

Hello Group,

I have just joined and from reading a few of your digests, think I have come home: )

I hope everyone is doing well today and stable. To introduce myself, my name is Gayleen, 48 years old, never smoked (every nurse and doctor asks that!) and have been grappling with IPF since Christmas 2001. I think I fit the normal pattern, a few pneumonia's before the season and I fell into respiratory distress on Christmas eve. I woke up on life support on Feb. 20. The doctors had to resuscitate me four times so they induced a coma. My family had been gathered to say their goodbyes because it was thought I would not live. My daugthers were 14 and 16. My heart bleeds that they had to experience that pain. Over time this was to happen so many times, that they knew I'd come back even when the doctors said 2% in 100. I was on the ventilator

for another month and half. Then a month in rehab, where I talked again, walked again(how painful that was) and regained most of my memory.I left Baylor Hospital in Texas on 80 pred and 3L oxygen 24/7. My sixteen year old Mirelle, went from being a teen in high school with their little cares to changing my port a potty, giving me insulin shots, helping me sort the 15 pills I was taking and running our house. My ex-husband drove from California and picked up my 14 year old, on the grounds I was too sick to care for her. Mirelle refused to go with him. I continued to visit the lung specialist and continued to crash, coughing up blood and gasping for air. I rode the ambulance too often. I was still trying to work, dragging my cannisters into the office and trying to have a phone discussion without coughing the whole time. After another lenghty hosital stay I lost my job. Six months later the company went out of business. Everyone there was like family and that hurt alot.

It also meant I had no insurance. At that time my ex file for custody of my youngest daugther and I had to appear in court in California to fight it. I was relatively stable and was driven to CA, 8 large cannisters a few small, refilled in Arizona, but i arrived in ca in insulin shock(I couldn't afford it) Fell into a diabetic coma for a week in a hospital outside of Victorville. I missed the court appearance. Recovered from that and was relatively stable for months, then it starts up again, pneumonia's ect.

After a few different ineffective doctors I found Dr Lugiania at St marys in Long beach and he helps me thru 3 ICU events and recommends I see DR Saggar at UCLA. After being in ICU at ucla, I awake to find I have a Floland Inplant, the worst medication in the world, thank God I only had it two days before they put in

a Remodulin implant an experimental med for pulmonary hypertension. Did I mention I had agreed to be a guinea pig? I had days left in my life expectancy and now I have months according to the Experts... but I have my own plan and that is to keep on going. Now they want me to take a pill called Letarisis , anyone have experience with that? I am on 4L 24/7 down to 10 pred but feeling the need for more. Just started losing my hair this year. Haven't been off of pred since 2002, was wondering what was messing with my sunny mood? Just got out of a 2 month stay in the hospital and am moving so ssssslow. wonder if I'll ever be "me"again.

Hope this wasn't too much, it feels good to write it down for some reason.

Thanks, Gayleen

____________ _________ _________ _________ _________ __

April 13, 2008

>

> Hello Group,

> I have just joined and from reading a few of your digests,

think I have come home: )

> I hope everyone is doing well today and stable. To introduce

myself, my name is Gayleen, 48 years old, never smoked (every nurse

and doctor asks that!) and have been grappling with IPF since

Christmas 2001. I think I fit the normal pattern, a few pneumonia's

before the season and I fell into respiratory distress on Christmas

eve. I woke up on life support on Feb. 20. The doctors had to

resuscitate me four times so they induced a coma. My family had been

gathered to say their goodbyes because it was thought I would not

live. My daugthers were 14 and 16. My heart bleeds that they had to

experience that pain. Over time this was to happen so many times,

that they knew I'd come back even when the doctors said 2% in 100.

I was on the ventilator

> for another month and half. Then a month in rehab, where I talked

again, walked again(how painful that was) and regained most of my

memory.I left Baylor Hospital in Texas on 80 pred and 3L oxygen

24/7. My sixteen year old Mirelle, went from being a teen in high

school with their little cares to changing my port a potty, giving me

insulin shots, helping me sort the 15 pills I was taking and running

our house. My ex-husband drove from California and picked up my 14

year old, on the grounds I was too sick to care for her. Mirelle

refused to go with him. I continued to visit the lung specialist and

continued to crash, coughing up blood and gasping for air. I rode

the ambulance too often. I was still trying to work, dragging my

cannisters into the office and trying to have a phone discussion

without coughing the whole time. After another lenghty hosital stay

I lost my job. Six months later the company went out of business.

Everyone there was like

> family and that hurt alot.

> It also meant I had no insurance. At that time my ex file for

custody of my youngest daugther and I had to appear in court in

California to fight it. I was relatively stable and was driven to

CA, 8 large cannisters a few small, refilled in Arizona, but i

arrived in ca in insulin shock(I couldn't afford it) Fell into a

diabetic coma for a week in a hospital outside of Victorville. I

missed the court appearance. Recovered from that and was relatively

stable for months, then it starts up again, pneumonia's ect.

> After a few different ineffective doctors I found Dr Lugiania at St

marys in Long beach and he helps me thru 3 ICU events and recommends

I see DR Saggar at UCLA. After being in ICU at ucla, I awake to find

I have a Floland Inplant, the worst medication in the world, thank

God I only had it two days before they put in

> a Remodulin implant an experimental med for pulmonary

hypertension. Did I mention I had agreed to be a guinea pig? I had

days left in my life expectancy and now I have months according to

the Experts... but I have my own plan and that is to keep on going.

Now they want me to take a pill called Letarisis , anyone have

experience with that? I am on 4L 24/7 down to 10 pred but feeling

the need for more. Just started losing my hair this year. Haven't

been off of pred since 2002, was wondering what was messing with my

sunny mood? Just got out of a 2 month stay in the hospital and am

moving so ssssslow. wonder if I'll ever be " me " again.

> Hope this wasn't too much, it feels good to write it down for some

reason.

> Thanks, Gayleen

>

> __________________________________________________

>

April 13, 2008

Hello my new Sister, Since I also recently joined this site, I have felt like I found a new family, hence you become like a new sister! I cried reading your post! My whole life, all I ever wanted to do was help people. I so wanted to help you and hated the fact that I couldn't. I was a Paramedic for years and they were the best of my life. I've only been diagnosed since 11/07, so all of this is new to me. I just want to welcome you and let you know there are so many people on this site you will fall in love with. We women still sound like school girls and some of the guys sound like Sir Lancelot, ready to help in a minute! I have no words of wisdom for someone who has been through what you have, I just wanted you to know I'm here! Stay in touch. Hugs, TerGayleen Aguayo wrote: Hello Group, I have just joined and from reading a few of your digests, think I have come home: ) I hope everyone is doing well today and stable. To introduce myself, my name is Gayleen, 48 years old, never smoked (every nurse and doctor asks that!) and have been

grappling with IPF since Christmas 2001. I think I fit the normal pattern, a few pneumonia's before the season and I fell into respiratory distress on Christmas eve. I woke up on life support on Feb. 20. The doctors had to resuscitate me four times so they induced a coma. My family had been gathered to say their goodbyes because it was thought I would not live. My daugthers were 14 and 16. My heart bleeds that they had to experience that pain. Over time this was to happen so many times, that they knew I'd come back even when the doctors said 2% in 100. I was on the ventilator for another month and half. Then a month in rehab, where I talked again, walked again(how painful that was) and regained most of my memory.I left Baylor Hospital in Texas on 80 pred and 3L oxygen 24/7. My sixteen year old Mirelle, went

from being a teen in high school with their little cares to changing my port a potty, giving me insulin shots, helping me sort the 15 pills I was taking and running our house. My ex-husband drove from California and picked up my 14 year old, on the grounds I was too sick to care for her. Mirelle refused to go with him. I continued to visit the lung specialist and continued to crash, coughing up blood and gasping for air. I rode the ambulance too often. I was still trying to work, dragging my cannisters into the office and trying to have a phone discussion without coughing the whole time. After another lenghty hosital stay I lost my job. Six months later the company went out of business. Everyone there was like family and that hurt alot. It also meant I had no insurance. At that time my ex file for custody of my youngest daugther and I had to appear in court in

California to fight it. I was relatively stable and was driven to CA, 8 large cannisters a few small, refilled in Arizona, but i arrived in ca in insulin shock(I couldn't afford it) Fell into a diabetic coma for a week in a hospital outside of Victorville. I missed the court appearance. Recovered from that and was relatively stable for months, then it starts up again, pneumonia's ect. After a few different ineffective doctors I found Dr Lugiania at St marys in Long beach and he helps me thru 3 ICU events and recommends I see DR Saggar at UCLA. After being in ICU at ucla, I awake to find I have a Floland Inplant, the worst medication in the world, thank God I only had it two days before they put in a Remodulin implant an experimental med for pulmonary hypertension. Did I mention I had

agreed to be a guinea pig? I had days left in my life expectancy and now I have months according to the Experts... but I have my own plan and that is to keep on going. Now they want me to take a pill called Letarisis , anyone have experience with that? I am on 4L 24/7 down to 10 pred but feeling the need for more. Just started losing my hair this year. Haven't been off of pred since 2002, was wondering what was messing with my sunny mood? Just got out of a 2 month stay in the hospital and am moving so ssssslow. wonder if I'll ever be "me"again. Hope this wasn't too much, it feels good to write it down for some reason. Thanks, Gayleen __________________________________________________Do You

Yahoo!?Tired of spam? Yahoo! Mail has the best spam protection around http://mail.yahoo.com Terry Pennisi 11/07 IPF Nevada __________________________________________________

April 13, 2008

Hi Gayleen!

Sorry you have to be here but glad you are. This is a good place to

land when you fall, and we all fall.

You sound like maybe a Texas girl? Maybe?

S, Lubbock, TX

NSIP w/PF celiac type 2 diab