Re: One of Life's Unexpected Whammies

[Guest guest]

,

I'm so sorry to hear about your niece Casey. An AVM is a true out of the blue sucker punch. My ex-husbands beautiful niece was diagnosed with AVM the summer of her 19th year. It was a horror, she had bleed into her brain and was in a deep coma for about 6 weeks. They finally were able to do surgery and saved her life though they told her parents they had no idea what type of function she'd end up with. This was 6 years ago.

is now 25 years old, has completed her undergrad degree and is persuing her masters in music therapy. She's engaged to be married and except for a slight speech impediment shows apparently no other ill effects of her nightmare.

I will pray that Casey's outcome is good and strength for her parents and your whole family in getting through this ordeal.

Hugs !

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

One of Life's Unexpected Whammies

Just wanted to share with you all the story of my Neice, Casey, aged 23 who's just been felled by a AVM ('Arterial Veinal Malfunction "or some such!) in her Brain...she was watching TV at her parent's house, talking to her Dad when her tongue went numb & then her eye & then she just collapsed!

She's in the Intensive Care Unit at Royal Melbourne Hospital, her family are maintaining a vigil by her bed-side. The Neurosurgeons are wating for the Swelling & bleeding to resolve before they do delicate surgery.

Apparently this malformation is congenital but NOT inherited... she's had it sitting witihin her brain since birth just waiting to go OFF! It's very VERY VERY rare but somehow SHE drew the short straw!

There's no knowing how she'll come out of it..what sort of neurological deficit she'll be left with. ....a bright, musical, highly verbal, active young woman .....time will tell but the waiting is soooo hard for her family.

Life is chaotic, messy, sometimes downright UNFAIR & we can NEVER tell what is round the next corner.. ALL we can do is live TODAY as the BEST day of our lives!

THAt's whay I'm telling you this news, to remind you all to ENJOY the life you each have right NOW......... .THIS minute...... .

in Oz

[Guest guest]

So sorry to hear of her situation. You're so right about the reminder.

If only I had been better at living life focused and recognizing its

frailty long before. Thats why I'm doing more with PF than I ever did

before. When I think of your neice, I consider myself and most everyone

here lucky. First ours didn't hit us at 23. Second, we have been warned.

We have time to enjoy. Maybe instead of hearing our diagnosis as " you're

going to die " we should hear it at " get off your derriere and enjoy life

as much as you can as fast as you can because you are mortal. " We get to

decide whether we're dying or living. I choose to live every day

possible until I die.

>

>

> Just wanted to share with you all the story of my Neice, Casey, aged

23

> who's just been felled by a AVM ('Arterial Veinal Malfunction " or some

> such!) in her Brain...she was watching TV at her parent's house,

talking

> to her Dad when her tongue went numb & then her eye & then she just

> collapsed!

>

> She's in the Intensive Care Unit at Royal Melbourne Hospital, her

family

> are maintaining a vigil by her bed-side. The Neurosurgeons are wating

> for the Swelling & bleeding to resolve before they do delicate

surgery.

>

> Apparently this malformation is congenital but NOT inherited...she's

had

> it sitting witihin her brain since birth just waiting to go OFF! It's

> very VERY VERY rare but somehow SHE drew the short straw!

>

> There's no knowing how she'll come out of it..what sort of

neurological

> deficit she'll be left with. ....a bright, musical, highly verbal,

> active young woman .....time will tell but the waiting is soooo hard

for

> her family.

>

> Life is chaotic, messy, sometimes downright UNFAIR & we can NEVER tell

> what is round the next corner.. ALL we can do is live TODAY as the

BEST

> day of our lives!

>

> THAt's whay I'm telling you this news, to remind you all to ENJOY the

> life you each have right NOW..........THIS minute.......

>

> in Oz

>

[Guest guest]

Dear , I am just reading me posts for this morning and there is yours about your niece. My heart is just broken fir you and the family. I am putting Caseys name in my prayer box. I was reading in my Bible that God has a perfect plan. OH is that hard to accept at times. But I know He is in control in all things. I am going to have a little talk with Jesus this morning. I have been a bit lazy in my prayer time but this definitely a call to prayer.  I have missed you.  Love and Prayers, PeggyIPF  2004,  Florida"Worry looks around, Sorry looks back,  Faith looks up." Just wanted to share with you all the story of my Neice, Casey, aged 23 who's just been felled by a AVM ('Arterial Veinal Malfunction "or some such!) in her Brain...she was watching TV at her parent's house, talking to her Dad when her tongue went numb & then her eye & then she just collapsed!She's in the Intensive Care Unit at Royal Melbourne Hospital, her family are maintaining a vigil by her bed-side. The Neurosurgeons are wating for the Swelling & bleeding to resolve before they do delicate surgery.Apparently this malformation is congenital but NOT inherited...she's had it sitting witihin her brain since birth just waiting to go OFF! It's very VERY VERY rare but somehow SHE drew the short straw! There's no knowing how she'll come out of it..what sort of neurological deficit she'll be left with. ....a bright, musical, highly verbal, active young woman .....time will tell but the waiting is soooo hard for her family.Life is chaotic, messy, sometimes downright UNFAIR  & we can NEVER tell what is round the next corner.. ALL we can do is live TODAY as the BEST day of our lives!THAt's whay I'm telling you this news, to remind you all to ENJOY the life you each have right NOW..........THIS minute....... in Oz     

[Guest guest]

My prayers are with your niece.

Steve 60 from WA IPF 2006 Parkinsons 2008

Reply-To: Breathe-Support To: Breathe-Support Subject: One of Life's Unexpected WhammiesDate: Tue, 13 May 2008 08:01:49 -0000

Just wanted to share with you all the story of my Neice, Casey, aged 23 who's just been felled by a AVM ('Arterial Veinal Malfunction "or some such!) in her Brain...she was watching TV at her parent's house, talking to her Dad when her tongue went numb & then her eye & then she just collapsed!

She's in the Intensive Care Unit at Royal Melbourne Hospital, her family are maintaining a vigil by her bed-side. The Neurosurgeons are wating for the Swelling & bleeding to resolve before they do delicate surgery.

Apparently this malformation is congenital but NOT inherited...she's had it sitting witihin her brain since birth just waiting to go OFF! It's very VERY VERY rare but somehow SHE drew the short straw!

There's no knowing how she'll come out of it..what sort of neurological deficit she'll be left with. ....a bright, musical, highly verbal, active young woman .....time will tell but the waiting is soooo hard for her family.

Life is chaotic, messy, sometimes downright UNFAIR & we can NEVER tell what is round the next corner.. ALL we can do is live TODAY as the BEST day of our lives!

THAt's whay I'm telling you this news, to remind you all to ENJOY the life you each have right NOW..........THIS minute.......

in Oz

[Guest guest]

, I just read the post about your niece. My thoughts & prayers are going your way. Let us know how it goes for her. Love & Toodles, Jane UIP/IPF 12/1998

>> ,> I'm so sorry to hear about your niece Casey. An AVM is a true out of the blue sucker punch. My ex-husbands beautiful niece was diagnosed with AVM the summer of her 19th year. It was a horror, she had bleed into her brain and was in a deep coma for about 6 weeks. They finally were able to do surgery and saved her life though they told her parents they had no idea what type of function she'd end up with. This was 6 years ago. > is now 25 years old, has completed her undergrad degree and is persuing her masters in music therapy. She's engaged to be married and except for a slight speech impediment shows apparently no other ill effects of her nightmare. > I will pray that Casey's outcome is good and strength for her parents and your whole family in getting through this ordeal.> Hugs !> > Beth > Age 48 Fibrotic NSIP 06/06> > Change everything. Love and Forgive > > > > > > One of Life's Unexpected Whammies> > > Just wanted to share with you all the story of my Neice, Casey, aged 23 who's just been felled by a AVM ('Arterial Veinal Malfunction "or some such!) in her Brain...she was watching TV at her parent's house, talking to her Dad when her tongue went numb & then her eye & then she just collapsed!> She's in the Intensive Care Unit at Royal Melbourne Hospital, her family are maintaining a vigil by her bed-side. The Neurosurgeons are wating for the Swelling & bleeding to resolve before they do delicate surgery.> Apparently this malformation is congenital but NOT inherited... she's had it sitting witihin her brain since birth just waiting to go OFF! It's very VERY VERY rare but somehow SHE drew the short straw! > There's no knowing how she'll come out of it..what sort of neurological deficit she'll be left with. ....a bright, musical, highly verbal, active young woman .....time will tell but the waiting is soooo hard for her family.> Life is chaotic, messy, sometimes downright UNFAIR & we can NEVER tell what is round the next corner.. ALL we can do is live TODAY as the BEST day of our lives!> THAt's whay I'm telling you this news, to remind you all to ENJOY the life you each have right NOW......... .THIS minute...... .> in Oz> > > > > >

[Guest guest]

...just read about Casey. what sad news for the family and what a surprise!

Of course I wish the best best outcome and treatment for her and I know you'll keep us posted.

I'm off to rehab so can't chat.

You/family are in my prayers.

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

One of Life's Unexpected Whammies

Just wanted to share with you all the story of my Neice, Casey, aged 23 who's just been felled by a AVM ('Arterial Veinal Malfunction "or some such!) in her Brain...she was watching TV at her parent's house, talking to her Dad when her tongue went numb & then her eye & then she just collapsed!

She's in the Intensive Care Unit at Royal Melbourne Hospital, her family are maintaining a vigil by her bed-side. The Neurosurgeons are wating for the Swelling & bleeding to resolve before they do delicate surgery.

Apparently this malformation is congenital but NOT inherited...she's had it sitting witihin her brain since birth just waiting to go OFF! It's very VERY VERY rare but somehow SHE drew the short straw!

There's no knowing how she'll come out of it..what sort of neurological deficit she'll be left with. ....a bright, musical, highly verbal, active young woman .....time will tell but the waiting is soooo hard for her family.

Life is chaotic, messy, sometimes downright UNFAIR & we can NEVER tell what is round the next corner.. ALL we can do is live TODAY as the BEST day of our lives!

THAt's whay I'm telling you this news, to remind you all to ENJOY the life you each have right NOW..........THIS minute.......

in Oz

[Guest guest]

, my sister in many ways!!

14 years ago this coming December, my Adam ( now the Daddy of Darah)

was hit by two cars while crossing the street leaving pre-med classes

at the Univ. of Penn.

He sustained very severe, life threatening head injuries...Why am I

sharing this?

He went through acute intensive care for 7 weeks, then intensive

inpatient rehab for many months.

AND HE WENT BACK TO SCHOOL THE FOLLOWING SEPTEMBER.

He changed his major...but he is perfect..they still don't know how or

why and to

be honest we don't care why... we're just thrilled he's here and

wonferful.

He was 24 at the time..age really helps. they are strong! and

resilient!

My prayers go to your niece and all of your family.

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

wrote:

Just wanted to share

with you all the story of my Neice, Casey, aged 23 who's just been

felled by a AVM ('Arterial Veinal Malfunction "or some such!) in her

Brain...she was watching TV at her parent's house, talking to her Dad

when her tongue went numb & then her eye & then she just

collapsed!

She's in the Intensive

Care Unit at Royal Melbourne Hospital, her family are maintaining a

vigil by her bed-side. The Neurosurgeons are wating for the Swelling

& bleeding to resolve before they do delicate surgery.

Apparently this

malformation is congenital but NOT inherited...she's had it

sitting witihin her brain since birth just waiting to go OFF! It's very

VERY VERY rare but somehow SHE drew the short straw!

There's no knowing how

she'll come out of it..what sort of neurological deficit she'll be left

with. ....a bright, musical, highly verbal, active young

woman .....time will tell but the waiting is soooo hard for her family.

Life is chaotic, messy,

sometimes downright UNFAIR & we can NEVER tell what is round the

next corner.. ALL we can do is live TODAY as the BEST day of our lives!

THAt's whay I'm telling

you this news, to remind you all to ENJOY the life you each have right

NOW..........THIS minute.......

in Oz

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