Sit quietly.
Close your eyes.
Do not try to do anything.
Feel the spark of life moving
within you.
Sit and Appreciate the feeling
for a while.
DEATH speaks
There was a merchant in bagdad who sent his
servant to market to buy provisions and in a little while the servant
came back, white and trembling, and said,
master, just now when i was in the market-place i was jostled by a
woman in the crowd and when i turned i saw
it was DEATH that jostled me. She looked at me and made a threatening
gesture; now, lend me your horse, and i will
ride away from this city and avoid my fate. i will go to Samarra
and
there death will not find me. the merchant
lent him his horse, and the servant mounted it, and he dug his spurs in
its
flanks and as fast as the horse could gallop
he went. Then the merchant went down to the market-place and saw
DEATH standing in the crowd. The merchant
walked up to DEATH and said, "Why did you make a threatening
gesture to my servant when you saw him this
morning?" "That was not a threatening gesture", DEATH said,
"It was only a start of surprise. i was astonished
to see him in Bagdad, for i had an appointment with him tonight in
Samarra."
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-- Jack London
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DESIDERATA
"Go placidly amid the noise and the haste,
and remember what peace
there may be in silence. As far as possible
without surrender be on
good terms with all persons. Speak your
truth quietly and clearly; and
listen to others, even to the dull and the
ignorant; they too have their
story. Avoid loud and aggressive persons,
they are vexatious to the
spirit. If you compare yourself with
others, you may become vain or
bitter; for always there will be greater and
lesser persons than yourself.
Enjoy your achievements as well as your plans.
Keep interested in
your own career, however humble; it is a real
possession in the
changing fortunes of time. Exercise caution
in your business affairs;
for the world is full of trickery. But let
not this blind you to what virtue
there is; many persons strive for high ideals;
and everywhere life is full
of heroism. Be yourself. Especially,
do not feign affection. Neither be
cynical about love; for in the face of all
aridity and disenchantment it is
as perennial as the grass. Take kindly
the counsel of the years,
gracefully surrendering the things of youth.
Nurture strength of spirit to
shield you in sudden misfortune. But
do not distress yourself with dark
imaginings. Many fears are born of fatigue
and loneliness. Beyond a
wholesome discipline, be gentle with yourself.
You are a child of the
universe, no less than the trees and the stars;
you have a right to be
here. And whether or not it is clear
to you, no doubt the universe is
unfolding as it should. Therefore be
at peace with God, whatever you
conceive Him to be. And whatever your
labors and aspirations, in the
noisy confusion of life keep peace in your
soul. With all its sham,
drudgery and broken dreams, it is still a
beautiful world. Be cheerful.
Strive to be happy."
A taxi passenger tapped the driver on the shoulder to ask him a question.
The driver screamed, lost control of the car, nearly hit a bus,
went up on the footpath, and stopped centimeters from a shop window.
For a second everything went quiet in the cab, then the driver said,
"Look mate, don't ever do that again. You scared the daylights
out of me!"
The passenger apologized and said, "I didn't realize that a little
tap would scare you so much."
The driver replied, "Sorry, it's not really your fault. Today is
my first day as a cab driver - I've been driving a hearse for the last
25 years!"
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Pat passed away on Jan 10th
at 3PM. She had a long hard struggle after her lung transplant. She survived
the transplant,
The TTP and was able to come home for Christmas.
She was discharged from the hospital on Dec. 14th and spent 12
days at home. She was on O2 and a Bi-Pap at
night. She was doing OK! for a few days but as some of you know when
they
did her transplant the nerve that controls
the right diaphragm was cut and she had no assistance from it to help her
breath.
She was recovering without it, but it
was a slow process. The Doctor's had hoped her chest muscles would be strong
enough to make the lung work better. She had
been in the hospital (UCSF San Francisco) for five and a half months
before being released. Pat spent Christmas
Eve in the emergency room at UCSF. She was producing more mucus than
she could cough-up. They suctioned her through
her trachea tube opening which hadn't healed yet. Afterwards they
super glued and sewed the opening closed.
She felt much better and we got home about
10 PM Christmas Eve. Christmas she day got up feeling pretty good but
still retained a lot of mucus. Pat had
a wonderful Christmas, day. Two of our children and their families were
able to
be there. Pat's sister provided the meal with
all the trimmings. We ate, talked and thoroughly enjoyed the day.
The next day Pat woke up
not feeling well and by afternoon I took her to the local emergency room.
They conferred
with the UCSF transplant doctor, and Pat was
transported by ambulance to UCSF Hospital. She arrived at 4AM on
the 27th. She was back on the ventilator by
afternoon. The doctors treated her for infection and rejection.
By Jan. 4th Pat was sedated and put on two
ventilators, one for each lung at different pressures etc. Pat never was
able to recover. The doctors I believe
did everything they could. The Nurses, RT'S and staff gave her excellent
care.
On January 10th the Doctors said to get the
family together it was time to let her go. Pat decided (I know) to not
make
us go through the process of taking her off
life support and live with that. Her blood pressure started to drop very
slowly, as if waiting for our two sons to
arrive before going. Pat left this world I think on her on terms. It was
as if
she was giving us time to say goodbye.
Our daughter, Pats sister and I were with Pat . Our sons arrived about
an
hour after her passing and were able to say
their goodbye.
Pat left a letter with last wishes that I did
not know about. She told a friend she had left a list. The
following is a
poem she left for us.
Thoughts by Thomas Coughenour /3/16/97
It is so quiet this Sunday
Morning. I wonder if we're allowed to talk about God on our obscure network.
No, not that
God of those ubiquitous, pathetic, television
scripture-quoting bible-thumpers. No I mean MY GOD.
She's the one our fancy
scientists with all their fancy equipment have failed to name. All
they've managed is to
designate Her as"that entity right before
the Big Bang." Unable to admit their ignorance like the rest of us,
they
inadequately call Her the "Point of
Singularity."
Now that Dr. Sagan is up there with Her, maybe
he can help clarify my God...She's the one that created his "billyuns
upon billyuns" of galaxies. She,d be
the one that gives us our shining existences, those tiny cracks of light
between
the two eternities of darkness. That,s the
one.
She's the one that made
me, me and made you--you. Even so these individual mysteries we call "us"
remain to
tantalize. Neither in our environment
nor in our heredity can we find the exact instrument that fashioned each
of us
individually. That force that has pressed
upon our lives a certain, intricate watermark whose unique design becomes
visible only on certain verify quiet Sunday
mornings....shhhhh...I think I can
hear her rustling through the trees..............
Pat enjoyed life , she believed in living in the moment. I miss Her so much, but know she is breathing easy.
Thank all of you!!!!
(her husband) Luke
Hello Dear Friends,
Today is the sadist day in my life as I went
with my two daughters and sister-in-law and my good friend on a sail boat
out of Newport
Beach, California and tossed my wife Linda's
ashes into the ocean. My wife loved sailing. This was her wish and
was only fitting and
proper. So now begins the dailly healing
in all of us. We are deeply saddened by the passing of my wife and the
children's mother.
Linda had been a COPD patient and bedridden
for over four years. We are all of the Christian faith and are very happy
that she is
in the Lord's Home and that there isn't any
more suffering on her part. As for Linda she is dancing and breathing deeply
there in Heaven and would not come back here for anything. It was very
hard to see her suffer all these years as she struggled for breaths.
My heart goes out to all of you who have the
disease. One of the first things we did after her death was to flush down
the toilet
all her medicines and the first to go down
was Prednisone!
Linda was a very young 60 years old and I am
67. I find it very difficult going to sleep at night and everything in
our home has memories.
My good friend Rod lost his wife two years
ago and told me that only time will heal.
To those of you out there on the COPD line
that have send me wonderful and loving wishes and all the prayers may I
say to you
that I appreciate you very much.
In closing I want to say thank you again and trust in the Lord as he will bring you through anything!
I intend to keep the COPD line updated on my healing, as this line helped Linda and I so many times.
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Cathy Urish -- the rural Elkhart woman who
on Feb. 27, 1987, became the second American to undergo a double-lung transplant
--
died Saturday at age 50.
She had been among the longest-surviving double-lung
transplant patients.
"The fact that the patient lived that long
is marvelous," said Dr. Raymond Pollak, surgical director of the abdominal
organ transplant
program at the University of Illinois College
of Medicine and OSF Saint Francis Medical Center in Peoria.
But the best part of those extra years was
that they made it possible for her to realize her most important wish,
which involved her
two children. "She wanted 10 years to watch
them grow up. That was her goal in life. She got 14," said her husband,
Steve.
She made it to two high school graduations
and the college graduation of their daughter, Katie, 22. Their son, Christopher,
19, is a
college freshman. Urish, an Illinois
State University graduate, was 36 years old when she received the lungs
of a 26-year-old Canadian
woman at Toronto General Hospital.
Her surgery in Canada helped "break the trail"
for others, her husband said, because soon after her surgery, the procedure
was
available in the United States. "She
was a very faithful person," he said, adding, "Her two kids were her driving
force."
"She was very giving and a very courageous
person," he said, and sometimes she would be on the phone for an hour or
more with
strangers, sharing her experiences to help
them make decisions about whether to try to get a lung transplant.
Ultimately, it was a lung disease similar
to pneumonia that killed his wife, Steve Urish said. She was in the hospital
2{ weeks.
Until the end, she helped -- even planning
her funeral, including what songs would be sung, he said.
"We'll remember her forever," said her husband
of more than 25 years.
Cathy Urish had been diagnosed in 1983 with
a genetic lung disorder called alpha-1 antitrypsin deficiency, which meant
that her
body produced too little of a substance that
makes lungs elastic so they can expand with each breath.
By 1986, she was down to 90 pounds, had quit
working in the fertilizer plant she owned with her husband and needed help
caring
for her children.She was in the end stages
of emphysema brought on by the lung disorder.
When she was accepted into Toronto General's
organ donor program, she didn't get help from her insurance company because
the procedure was considered experimental.
Residents of Elkhart and Mount Pulaski -- where Urish had been a special
education
teacher -- raised more than $170,000 for her
surgery.
Cathy Urish told The Pantagraph several months
after the surgery about her joy in being able to breathe easily and lift
her 6-year-old
son for the first time in years.
Double-lung transplants didn't occur until
the late 1980s after approval of cyclosporine, a powerful immuno-suppressant
drug
that helps the body to accept a transplanted
organ, Pollak said.
After the surgery in 1987, Cathy Urish was
able to return to teaching for several years before complications set in.
She remained
fairly active after she stopped teaching but
had to cut back when she went on dialysis three years ago. She was very
weak for the
last year or so, according to her husband.
Lung transplants remain rare. In 1998, the
last year for which final figures are available, there were 862 lung transplants
in the
United States, and 369 of those were double-lung
transplants. Kidney transplants number 14,000 to 15,000 a year.
Lungs are difficult to transplant because
they are so fragile. A lung or lungs must be received from a donor within
an hour or two,
Pollak said.
According to the United Network for Organ
Sharing, double-lung transplant recipients have a survival rate of 75 percent
after a year,
57.5 percent after three years and 48.4 percent
after five years.
"She was a very lucky person," Pollak said
of Urish's nearly 14 years of life after her double-lung transplant.
By PAUL SWIECH and SHARON K. WOULFE
Pantagraph staff
Wednesday, January 31,2001.
This is abso;ute;y the last day of the momth
and I am so late in publishing this.
"Every new adjustment is a crisis in self-esteem."
- - - Eric Hoffer
Dear Dad's Friends,
I just wanted to write you and let you know that
dad passed away on Feb 2 at 4:15 pm. We miss him so very much.
He put up a heck of fight all the way to the end. I was fortunate
that I was able to come up and spend time with
dad during his difficult time and at the end when it was time for
him to go home with Jesus.
Dad had many friends and made time for each of
them. Our memories will carry us through until we meet again.
Take care.
Dad's daughter, debra
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I'm frustrated with end-of-life care
for COPD patients. I'd like to see some sort of support network like cancer
patients have,
including respite for caregivers, honest discussions
about end-of-life palliative care, and hospice support.
The problem, as I've seen COPD in three generations of my family, is that we take so long to die, to put it bluntly.
My grandmother and grandfather had a jewel
of a housekeeper who helped support them for the nearly 10 years that Grandma
couldn't do much of anything but sit and knit.
My dad's getting to the same stage, and there is no jewel of a housekeeper.
My
mother is getting run ragged taking care of
everything. Twenty years or so, I'll likely be the same kind of burden
on my husband,
as I have just been diagnosed with the disease.
Another problem with many COPDers is that they
are not in acute pain, they just can't breathe. Because they often don't
have
enough breath to bitch their heads off, palliative
care is woefully inadequate, and there are still many pulmonologists who
refuse
to give anti-anxiety meds "because they'll
interfere with breathing."
I have written down some guidelines for my
husband in the event I go through a bad spell and can't make my wishes
known or give
the doctors a good slap upside the head. I
think it's a good idea for all COPDers to do the same -- and to record
some of the
frustrations and limitations of their condition
for the docs to put in their medical charts. Who knows?
At some point the docs might even read it!
Jean in Michigan
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Elaine has returned home and funeral arrangements have been made
for her
husband, Clyde Rester, who passed on yesterday. All services
will be held
in Bogalusa, LA at Poole-Ritchie Funeral Home. Visitation
on Friday,
February 16, from 5 to 9 p.m. and funeral on Saturday at 11 a.m.
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It is with great regret that I must inform you that a dear friend
and 8+ year lung transplant passed
away this morning in New Orleans. Barbara Soroe died this
morning at Ochsner Hospital. For
those of us who knew her will sorely miss her spirit and determination.
Barbara was the editor of our local transplant newsletter, LungTrax.
Her
insight and leadership will be missed as well. Please, join
me in praying for her and her
husband, Tommy.
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Cigarettes have claimed another loved one. My husband, Wayne,
died March 7th from Cor Pulmonale
caused by his long term smoking. He was age 70 and had hoped
to spend our 50th anniversary together in
November of this year with me. He was diagnosed with the congestive
heart failure (Cor Pulmonale)
seven years ago. His retirement dreams were never fulfilled.
Hospice took over care March 1 and
did help soften the final days, I would recommend it to anyone who
can accept the fact that there is
no more than can be done.
He dreaded a return to the Hospital, where he never received enough
rest, so he made the choice to
die at home surrounded by his loving daughters and myself.
I loved him deeply but hated the cigarettes.
Mary Hetzel
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My cousin and Childhood playmate
Samuel E. Mitchell Sr. passed on Sunday Match 18, 2001 |
Sammy E. Mitchell Sr.
Nashville
Sammy E. Mitchell Sr., 57, president of SEMA Corp., died of heart
failure
Friday, March 16, 2001, at St. Thomas Hospital. Visitation is 12:30
p.m.
Monday at Thweatt-King Funeral Home in Cleveland. Services are 2
p.m. Monday
at First Baptist Church in Cleveland with burial in New Cleveland
Cemetery.
Mr. Mitchell was a graduate of Cleveland High, received a BBA in
marketing
from Delta State University. He was an active member of the National
Rifle
Association, an Eagle Scout and active supporter of the Boy Scouts
of America.
Survivors include: wife, Diana Mitchell of Gallatin, Tenn.; son,
Sammy E.
Mitchell Jr. of Cordova, Tenn.; mother, Mae J. Mitchell of Gallatin,
Tenn.;
and one grandson, James E. Mitchell of Cleveland.
Memorials may be made to the American Cancer Society or the Boy
Scouts of America.
To all you wonderful people,
This is my final post. I am Debbie Lafferty, daughter of Barbara
Howard. Mom passed on March 22 in her home,
in her own bed and I was by her side. It's been a rough road but
I could not have done as well as I did without the
wonderful knowledge and support given by this group. I wish you
all the best of health and good breathing days ;))
I cannot thank you enough for all the times that individuals would
answer my questions and point me in the right
direction. Doctors and medical folks are good, but not having been
there, they couldn't give me the "inside" help
that you folks gave to me for my Mom. Once again, thank you all
for everything.
God Bless,
Debbie Lafferty
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"Hey, how would you like to be God awhile And steer the world?""Okay", says I, "I'll give it a try. Where do I sit? How much do I get? What time is lunch? When can I quit?" "Gimme back that wheel," says God, "I don't think you're quite ready yet." Shel Silverstein |
is what you say. What you say is what you do. What you do is who you are. Who you are is your destiny. Everyday think your way to your real destiny!" |
The real tragedy in this, is the question of could he have been prevented?
Obviously we will never know for
sure. Mr. VanTassel was a participant in the NETT study.
He was evaluated at the center in Los Angles.
He was randomized to medical instead of surgery. This was
approximately 18 months ago. We will always
wonder if he had been allowed to have the surgery, would he still
be enjoying life today. According to
the family the doctors in LA said he was an ideal candidate.
The other tragedy is, had Mr. VanTassel had the money he could have
had the surgery as a self pay patient.
His inability to pay, may have cost him his life.
This is tragic.
CPPC
pulmonarycoalition@yahoo.com
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From: Kelly May <rkellymay@earthlink.net>
I'm Male and of Welsh blood which makes a mule look meek by comparison.,
LOL. I credit that with getting me
through a lot of intensive physical training in my past and helping
me maintain now. I have been on O2 24/7 for
a little over two years. I don't have an oximeter so I don't
know if I desat or not. I crank the O2 to 4 lpm when I
really push it on the treadmill or the weight bench. I didn't
mention it before, but I also do short wind sprints on
the treadmill where I crank the speed up for 30 seconds or so several
times in that half hour period. I don't want
to condition myself for one speed only, LOL. It about kills
my healthy wife who is 16 years younger than me,
to walk at 3 lpm in the mall, LOL. It's odd but I found if
I walk faster or slower than my treadmill speed I get out
of breath, so I started to vary it a few weeks ago.
I considered transplant a couple of years ago and went to UCSD
for evaluation. They said I would make an excellent candidate
because of my physical condition. My
intercostal strength was off their chart due no doubt to my weight
lifting, LOL. After a lot of thought I
decided against being listed. I may change my mind someday
but the more this disease inconveniences
me the madder I get and the more I fight it. The thing that
aggravates me the most is that it is so time
consuming and takes such a big part of my life. I don't like
having my life centered around some physical
ailment but it's hard to keep out of ones mind when you cant breath
and hurt a lot. Oh well, it's just another
bump in the road and i've been down a lot of bumpy roads.
I just try to enjoy the ride.
Kelly
You may have heard that Betty passed away, early on the morning of
March 30. Her son, Terry was at her side
and she went peacefully. I just called and talked to Terry
at the house. He said they have no plans for a service
or anything, because there is not money. He siad he knew they were
walking into trouble but it is a nightmare.
Their plans are to creamate her ( $1300-1400) and come back later
and spread her ashes where she
wished and have some type of service then. I told him about how
Betty liked the idea of balloons for Myrls and
he said we can send him regular baloons and he will fill them with
heliun and release them when they spread her
ashes. They need to head back to Florida ASAP so if anyone wants
to help financially
send the checks to their home address.
Terry and Elise Williams
3140 Birdseye Circle,
Gulf Breeze, 32561
Terry said they had made arrangements for the medical school to
keep the body for study but they refused it about
an hour ago. He has made contact with a relative who has offered
to help big time with finances and he is
supposed to call them back later this evening. walk by faioth
not by sight , yea miss you to.
hugsprayers darla
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What do you see, nurses, what do you see? What are you
thinking when you're looking at me?
A crabby old woman, not very wise, Uncertain of habit, with faraway
eyes?
Who dribbles her food and makes no reply When you say in a
loud voice, "I do wish you'd try!"
Who seems not to notice the things that you do, And forever is losing
a stocking or shoe.....
Who, resisting or not, lets you do as you will, With bathing and
feeding, the long day to fill....
Is that what you're thinking? Is that what you see? Then open your
eyes, nurse; you're not looking at me.
I'll tell you who I am as I sit here so still, As I do at your bidding,
as I eat at your will.
I'm a small child of ten ...with a father and mother, Brothers and
sisters, who love one another.
A young girl of sixteen, with wings on her feet, Dreaming
that soon now a lover she'll meet.
A bride soon at twenty -- my heart gives a leap, Remembering
the vows that I promised to keep.
At twenty-five now, I have young of my own,Who need me to guide
and a secure happy home.
A woman of thirty, my young now grown fast, Bound to each
other with ties that should last.
At forty, my young sons have grown and are gone, But my man's beside
me to see I don't mourn.
At fifty once more, babies play round my knee, Again we know children,
my loved one and me.
Dark days are upon me, my husband is dead; I look at the future,
I shudder with dread.
For my young are all rearing young of their own, And I think
of the years and the love that I've known.
I'm now an old woman...and nature is cruel; Tis jest to make old
age look like a fool.
The body, it crumbles, grace and vigor depart, There is now a stone
where I once had a heart.
But inside this old carcass a young girl still dwells, And now and
again my battered heart swells.
I remember the joys, I remember the pain, And I'm loving and living
life over again.
I think of the years....all too few, gone too fast, And accept
the stark fact that nothing can last.
So open your eyes, nurses, open and see, Not a crabby old
woman; look closer...see ME!!
Remember this poem when you next meet an old person who you
might brush aside without looking at the young soul within
We will one day be there, too! All of us!!!!!!
Bill is now breathing easy. He passed away at 4:29 this morning with his family beside him.
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I said good-by to my kid sister ,Ann Ponder, on 4/26/01. Her
death was listed as a heart attack,
but we know better. The last three years of her short life
(54) was dictated and dominated by COPD.
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"LET ME DIE LAUGHING"
We are all dying, our lives always moving toward completion We need
to learn to
live with death, and to understand that death is not the worse of
all events. We
need to fear not death, but life....... Empty lives........ Loveless
lives,
Lives that
do not build upon the gifts that each of us have been given,
Lives that
are like living deaths,
Lives which
we never take the time to savor and appreciate,
Lives in
which we never pause to breathe deeply.
What we need to fear is not death, but squandering the lives we
have been
miraculously given.
So let me die laughing, savoring one of life's crazy moments.
Let me die holding the hand of one I love and recalling that I tried
to love and
was loved in return.
Let me die remembering that life has been good, and that I did what
I could.
But, today, just remind me that I am dying so that I can live, savor,
and love
with all my heart.
---
http://lists.organtx.org
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I am Rhoda's son Kevin and I'm afraid I have sad news. On Friday,
May 18, 2001. Mom was called upon
to return to the loving arms of our heavenly father. She fought
a long and hard battle with her COPD and
she never gave up. At the end, I was with her and I could
tell that she was just so tired that I held her close
and told her that she should rest and that if this was the time
that was meant for her to go, then she should not
ignore His call. I told her that I would be fine and that
she deserved the peace that only He could give her.
She passed very quietly and peacefully in her sleep, just as she
had desired. Her one wish for everyone who
knew her was that you do not mourn for her but rather, rejoice,
for she is finally at peace and breathing freely
(something she hasn't done for over 20 years). At this time,
I am discontinuing her webtv so that we can
clean up her apt for someone else to use so no replies are necessary.
Her love to all of you and God's
Blessings as well. - Kevin Zander
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Friday May 25, 2001
Renea and Mygrandson Daevid, came to stay with me while Don leaves
on Monday for his vacation to Germany to visit
Gina, my number two daughter who is in the Army and stationed there.
She will be leaving Germany and returning to the
United States in September of this year. She will stop and
visit for about a week and then visit some other friends across
the USA. Her next duty station is fort Sam Houston in San
Antinio Texas. She has already purchased a home there.
My grandson Daevid was here for two additional weeks after his mother
left. We put him on a plane and he flew back alone.
Don and I had it pretty well planned that Renea could take care
of me while Don was gone, but, we were totally unprepared for
the week that Don was to leave, Glenn called and asked if he could
come here as he was leaving his wife. He said he just had to
get out of it and away. This is after 12 years of marriage.
As a mother, all I could say was yes, come home as I love my son and
you help your children when they are hurting. He came here
on the bus from Tennessee. With his suitcases. That's all.
No car, no tools to work, no nothing, but , the clothes on his back,
he said he left it all for her. All he wanted was O-U-T!!!
He got a job the second week. The first week he unwinded.
Don carries him to work and picks him up. He has lots of driving
fines to pay off, which he has akready done. Just waiting
from word back from court so he can apply for license here in Pa.
Then he will have to save for a vehicle to purchase here.
It will take him a while to get on his feet and get his life back
together. While Don was in Germany, I had a daughter and a
son and a grandson to visit with every day. That was when
Glenn started working on building us some French doors for the patio,
off the back of the house. They will be georgous when completed.
Daevid my grandson and I, went to TOYS-R-US to get some stuff to play with.
We got lego's and a pokemon
GOLD game for whatever it is you play them on. We also got
some art supplies. So days he did this stuff and played outside
Afternoons he read Harry Potter to me and after dinner in the evenings
we played board games. And throughout all the
day and evening we all loved on little snowball. Who by the
way loves to be loved on by everyone.
Daevid is a typical 9 year old young man. Does not like girls.
Does not like to spend a lot of time outside. Prefers to
be inside. Loves people intensely. Has somewhat of an
anger problem. He is working on it constructively though.
Has a grammy who thinks he hung the moon. He is more than
an all right kid.
More later.
"At the going down of the sun and in the morning we shall remember
him".
Words are difficult to find. Keegan died this morning at 5:45 of
kidney failure.
It doesn't seem that long ago that we were sending Birthday greetings
to Keegan as he turned 17 and he was doing so
well, and then wham! a couple of days later he was rushed to the
hospital. He and his mom's courage gave me so much
encouragement and inspiration. They refused to give up.
I know he is resting in God's arms now, but he will be so missed.
It's hard when we lose anyone but to lose a child is so tragic.
This may sound strange, but it is so comforting to see all the
condolences and supportive messages for Keegan and his family.
Like many of you, I fell in love with this family and my
heart is aching.
From: "Dannon Baker" Words are difficult to find. Keegan died this
morning
at 5:45 of kidney
failure.
Keegan will be cremated and his ashes scattered somewhere appropriate.
Jill said that he never "really* said where,
except to *jokingly* say over Disneyland. Then in about a month,
Jill will have a party - at Keegan's request - to
celebrate. Keegan didn't want people mourning - he wanted people
to remember the happy times, to wear what they
love to wear and to listen to music they love to hear.
Keegan fought valiantly - and so did Jill.
Kara has lost a brother she could look up to and Logan has lost
his best friend.
Keegan had his whole family with him when he went - mom, dad, brother
and sister.
As I told Jill, she is a wonderful mother to all of her children
and an inspiration to us all. She did everything she
possibly could for Keegan.
If anyone wants the family address, please post to Agnes.Moore@snet.net
privately.
In lieu of flowers - Jill would appreciate donations be made to
CRRI
2672 Bayshore Parkway #520
Mountain View, CA 94043
Peace and rainbows, Agnes
"Minds are like parachutes - they only work when they are open."
|
It is with a heavy heart that I write to tell you Mark James died last week at the University of Wisconsin.
Mark had bronchiectasis as well as hypogammaglobulinemia. He
had a double lung transplant at the U. of Wisc. about three
years ago doing well enough to return to work and many of the sports
and outdoor activities he loved. But he developed
chronic rejection last fall and underwent photopharesis. It
seemed to work and the rejection was halted but not before he lost
enough function to be listed for re-transplant. His wife tells
me he went to Wisconsin for a clinic visit two weeks ago and they discovered
that he had both pseudomonas and aspergillus infections in his lungs as
well as a bacterial infection in his blood
stream all of which combined to overwhelm his kidneys, lungs, etc.
His wife is planning a memorial service and a celebration of his
life. His wish was to be cremated. She does not know
Mark's password so she cannot tap into his computer for e-mail but
sympathy cards can be sent to:
Cheryl James
22756 Nona
Dearborn, Michigan 48124
|
On Nov. 18, 1995, Itzhak Perlman, the violinist, came on stage to
give a concert at Avery Fisher Hall at Lincoln Center in New York City.
If you have ever been to a Perlman concert, you know that getting on stage
is no small achievement for him. He was stricken
with polio as a child, and so he has braces on both legs and walks
with the aid of two crutches.
To see him walk across the stage one step at a time, painfully and
slowly, is an awesome sight. He walks painfully, yet majestically,
until he reaches his chair. Then he sits down, slowly, puts his
crutches on the floor, undoes the clasps on his legs, tucks one foot
back and extends the other foot forward. Then he bends down and
picks up the violin, puts it under his chin, nods to the conductor
and proceeds to play.
By now, the audience is used to this ritual. They sit quietly while
he makes his way across the stage to his chair. They remain
reverently silent while he undoes the clasps on his legs. They wait
until he is ready to play. But this time, something went wrong.
Just as he finished the first few bars, one of the strings on his
violin broke. You could hear it snap - it went off like gunfire across
the room. There was no mistaking what that sound meant. There was
no mistaking what he had to do. People who were there that
night thought to themselves: "We figured that he would have to get
up, put on the clasps again, pick up the crutches and limp his
way off stage - to either find another violin or else find another
string for this one." But he didn't. Instead, he waited a moment,
closed his eyes and then signaled the conductor to begin again.
The orchestra began, and he played from where he had left off.
And he played with such passion and such power and such purity as
they had never heard before.
Of course, anyone knows that it is impossible to play a symphonic
work with just three strings. I know that, and you know that,
but that night Itzhak Perlman refused to know that. You could see
him modulating, changing, recomposing the piece in his head.
At one point, it sounded like he was de-tuning the strings to get
new sounds from them that they had never made before.
When he finished, there was an awesome silence in the room. And
then people rose and cheered. There was an extraordinary
outburst of applause from every corner of the auditorium. We were
all on our feet, screaming and cheering, doing everything
we could to show how much we appreciated what he had done.
He smiled, wiped the sweat from this brow, raised his bow to quiet
us, and then he said - not boastfully, but in a quiet, pensive,
reverent tone, "You know, sometimes it is the artist's task to find
out how much music you can still make with what you have left."
What a powerful line that is. It has stayed in my mind ever since
I heard it. And who knows? Perhaps that is the definition of
life - not just for artists but for all of us. Here is a man who
has prepared all his life to make music on a violin of four strings, who,
all of a sudden, in the middle of a concert, finds himself with
only three strings; so he makes music with three strings, and the music
he made that night with just three strings was more beautiful, more
sacred, more memorable, than any that he had ever made
before, when he had four strings. So, perhaps our task in this shaky,
fast-changing, bewildering world in which we live is to make
music, at first with all that we have, and then, when that is no
longer possible, to make music with what we have left.
"There are no victories at bargain prices." - Dwight D. Eisenhower
"But thanks be to God!
He gives us the victory
through our Lord Jesus Christ."
1 Corinthians 15:57 (NIV)
This is Harry's daughter, Tammy. I wanted to let everyone know that
my dad passed away yesterday (sat, June 2nd) He was
in no pain and went very peacefully. Thank you to everyone that
sent emails and prayers out to my daddy and my family.
This is a very difficult time for my family and I, but we
are happy that my dad is no longer suffering. To all who got to know
him, knows how smart, funny , strong and determined he was.
I am sure he touched alot of your hearts...he did that with
everyone he came into contact with. Thank you again..I will periodically
continue to check the emails. - Tammy
|
Penny Brown passed away 11 days ago from a brain aneurysm
It was a real sudden and unexpected thing.
Nothing related to her copd at all. She was on her way down
here to Seattle to visit her daughter and she
had planned to meet a cyberfriend face to face for the first
time. She called her daughter saying that she
thought something was very wrong. Daughter contacted her neighbor
and they got her to doctor and
helicoptered her to Seattle.... by the time she got here she was
in acoma.... was on life support for 5 days
and they determined that she would not regain consciousness....Her
daughter said she thought that Penny
really did not suffer, but just slipped quietly away.
|
I regret to inform you of the passing of Bob Locke. He suffered heart failure as the result of fighting a long infection.
|
For all the people in Florida that new Hazel Brown her Husband
Brownie Past away last night around 5:00pm he was her
caregiver This was so sad to hear because he enjoy life and
really kept Hazel going . If you would like to send a card you can
send it to: Mrs Hazel Brown
PO Box 118
Terra Ceia, FL, 34250
Hazel was Transplant at Shands Hosiptal Oct -1994
|
Cynthia Grant Montgomery passed away 6-19-01 at 11:00 A.M.
Cynthia Grant passed away yesterday due to complications during
her stomach surgery. Cynthia was on prednisone
for over 10 years and was on USC's TX list for 3 years but not called
for TX because she needed to gain weight which
she was unable to do, then she developed an infection which landed
her on a vent back in October. Cynthia was not as
fortunate as some of us are in respect to support and the care that
she was receiving. Unfortunately this can be the
deciding factor whether some one lives or dies. Cynthia was
very strong in her faith and no longer has to deal with the
long hard battle she has had to fight.... I met Cynthia in an assisted
Care facilitie 7 years ago. She wasn't on 02 at the
time but I knew by the way she breathed that she had a lung disease.
|
Beatitudes of the Aged
Blessed are they who understand my faltering step and palsied hand.
Blessed are they who know my ears today must strain to catch the
things they say.
Blessed are they who seem to know my eyes are dim and my wits
are slow.
Blessed are they who looked away when coffee was spilled at the
table today.
Blessed are they with cherry smile who stop to chat for a little
while.
Blessed are they who never say "You've told that story twice today."
Blessed are they who know the ways to bring back memories of yesterdays.
Blessed are they who make it known I'm loved, respected, and not
alone.
Blessed are they who ease the days on my journey home in loving
ways
ITEMS BELOW ARE LAST I HEARD OF A DEAR FRIEND WHO IS VERY IMPORTANT IN THE COPD WORL
Subject: THE COPD ADVOCATE: A Voice for the
COPD Patient
Date: 3 Jul 2001 18:08:27
-0000
From: "The COPD Advocate"
<copdadvocate-owner@listbot.com>
To: List Member <o2@olivija.com>
The COPD Advocate - http://www.copdadvocate.com
----------------------------------------------------------------------
Expressing opinions of the Publisher/Editor
and readers, issued gratis periodically, as deemed appropriate, in the
fond hope that it
may positively influence early diagnosis,
better treatment, and appropriate support of COPD patients and their caregivers.
______________________________________________________________________
The Publisher/Editor accepts responsibility
for all content, subject to the caveat that he is not a physician and is
unqualified to
offer medical advice, per se.
______________________________________________________________________
To subscribe, go to www.COPDAdvocate.com and
enter your screen name at the ListBot box, then click the ListBot button.
______________________________________________________________________
Address Letters to the Editor to SOBNSA@aol.com
______________________________________________________________________
Volume 1, Issue No. 7, July 2001
______________________________________________________________________
Dear Subscriber, FYI:
The latest round of visits to my doctors demands
that I accept the facts that I have been denying for the past six months
or so: that
I am not bouncing back from my recent "episodes"
as I have, on several occasions, over the last six to seven years.
I'm sorry to
say but, despite my best intentions, I am
no longer able to meet the commitments I have made; the maintenance of
the COPD
Advocate website and publishing this newsletter
are the last of those commitments I am surrendering.
It is very gratifying to note that the website
is still receiving thousands of hits every month and that the newsletter
has attracted
960 subscribers. This supports my contention
that COPD patients, their caregivers and the medical staffs committed to
their
support need an aggressive advocate.
But it places an onerous responsibility on me to now find and execute a
new scheme for accomplishing the greatest good.
I believe that many individuals, or teams of
volunteers could easily have done as much or more than I have over these
last
few
years and could be more effective in the future.
The determining factor is likely to be motivation rather than ability,
so I believe it is appropriate to ask you, my readership, to make your
wishes known. If I am able to find one or more responsible, dedicated
individuals,
I am prepared to turn over ownership of the
website and newsletter and, to the best of my ability, lend editorial and
emotional support. Should I not find one or more individuals to succeed
me and carry on this advocacy, I will be forced to simply cease publication
rather
than see such a concept die aborning.
Please address all responses on this matter to SOBNSA@aol.com
In closing, I am compelled to speak of the
thousands of friends I have made through Internet activities for COPD and
emphysema
and am certainly richer for having received
so much love from so many people. I doubt that anything constructive
can be gained by
sharing the litany of specific problems that
now rob me of the strength to continue in this arena. I will spare
you the details of my
personal situation except to say that some
of the problems are respiratory, some are secondary effects of respiratory
problems,
and some are independent of respiratory origins.
This has culminated in repeated situations in which effective treatments
must be
ruled out because of "complicating" conditions.
With love and warments regards,
Bill Horden
____________________________________________________________________
Published by Bill Horden, 7 Whitechurch Lane,
San Antonio, TX 78257.
Additional information on many subjects may
be found on my website at
http://www.COPDAdvocate.com
______________________________________________________________________
Recipients are free to copy and distribute
any materials of interest to
them.
THE CRACKED WATER POT
A Water bearer in India had two large pots, each hung on each
end of a pole which he carried across his neck.
One of the pots had a crack in it, and while the other pot
was perfect and always delivered a full portion of water at the
end of the long walk from the stream to the master's house, the
cracked pot arrived only half full. For a full two years
this went on daily, with the bearer delivering only one and a half
pots full of water in his master's house. Of course, the
perfect pot was proud of its accomplishments, perfect to the end
for which it was made. But the poor cracked pot was
ashamed of its own imperfection, and miserable that it was able
to accomplish only half of what it had been made to do.
After two years of what it perceived to be a bitter failure, it
spoke to the water bearer one day by the stream. "I am
ashamed of myself, and I want to apologize to you."
Why?" asked the bearer.
"What are you ashamed of?"
"I have been able, for these past two years, to deliver only half
my load because this crack in my side causes water
to leak out all the way back to your master's house. Because
of my flaws, you have to do all of this work, and you
don't get full value from your efforts," the pot said.
The water bearer felt sorry for the old cracked pot, and in his
compassion he said, "As we return to the master's
house, I want you to notice the beautiful flowers along the path."
Indeed, as they went up the hill, the old cracked pot
took notice of the sun warming the beautiful wild flowers on the
side of the path, and this cheered it some. But at the end
of the trail, it still felt bad because it had leaked out half its
load, and so again it apologized to the bearer for its failure.
The bearer said to the pot, "Did you notice that there were flowers
only on your side of your path, but not on the other pot's
side? That's because I have always known about your flaw,
and I took advantage of it. I planted flower seeds on your side
of the path, and every day while we walk back from the stream, you've
watered them. For two years I have been able to
pick these beautiful flowers to decorate my master's table.
Without you being just the way you are, he would not have this
beauty to grace his house."
Moral: Each of us has our own unique flaws. We're all
cracked pots. But it's the cracks and flaws we each have that
make our lives together so very interesting and rewarding.
You've just got to take each person for what they are, and
look for the good in them. There is a lot of good out there.
There is a lot of good in us!
Blessed are the flexible, for they shall not be bent out of
shape.
Remember to appreciate all the different people in your life!
If it wasn't for the cracked pots we run into in our lives,
life would be pretty boring and uninteresting...
Thank you for being my crackpot friends!
Monday July 9, 2001
My son Glenn is 41 today. We will have a little cake tonight
for him and a small gift. He is now living with us again.
He has left the abusive wife. (yes, there really is such a thing)
He has a job and is working to straighten out his credit,
and other problems from that marriage that has left him emotionally,
financially and spiritually drained.
All I can do is provide love and support for him. He is working
in his off hours to build me a set of french doors off the patio,
that go into the workshop. The doors are beautiful.
Solid mahogany. This is the now picture half way through.
unstained, without hardware or glass, and with only part of frame
completed.
I promise to try to write more in the future about what is going on in my life. More on this later.
Sanskrit Proverb
Look to this day,
For it is life,
The very life of life,
In its brief course lies all
The realities and verities of existence,
The bliss of growth,
The splendor of action,
The glory of power.
For yesterday is but a dream,
And tomorrow is only a vision .
But today well lived,
Makes every yesterday
A dream of happiness
And every tomorrow
A vision of hope.
Look well, therefore,
To this day.
The Philip Morris company said that the world was better off with
people smoking. That it saves
money because PEOPLE
DIE YOUNGER and it save the country money on medical
expenses.
|
Shirley Mae Ready died from heart failure at 4am Monday July
9th in Columbia SC.
Her heart could no longer keep up with the load COPD had placed
upon it.
Thank you so much,
Her daughter
Jummie
|
In memory of Carl Spiotto, Sr. who passed away July 6, 2001 of causes
unrelated to transplant.. Carl was transplanted
June 9, 1993. Prayers go out to family, wife Barb and son
Carl Jr.
|
http://home.mindspring.com/~jmtoon/
This is a letter I recieved from Shirley, Gary's wife
My Dear Friends & Gary's "Loved Ones"
You don't know how much it hurts me to have to write
this e-mail to you. We just ran out of luck and time.
Gary passed away about 10:30p.m. last nite here at
home. I am desperately trying find some solace in the
fact that he didn't suffer & went peacefully. I just
still can't believe it, but oh how he feared & dreaded
the "end" of his struggle with emphysema. He didn't
want to be an invalid or burden to anyone.
He was an organ donor & we will have his remains
cremated. Plans are not definite yet, but we will
have a memorial service here probably Mon., possibly
not til Tue., depending on how our family members can
make it. We will then in a day or two take his ashes
to our hometown in Colo. (the place we both grew up)
to be interred there at the Towner Cemetry.
Will try to get back to you at a later date. I just
want to thank you all for all the moral support you
gave Gary. He loved you very much.
Please keep all my family in your prayers.
May God Bless.
Shu
- Marcel Proust
|
|
Alisa Pink, 2 time bilateral transplant patient, lover of Bruce Springsteen
music, creator of some of the funniest jokes
you could ever imagine, contributor to http://papapoo.com
website, and loving wife passed away July 19th, 2001.
She struggled greatly in the recent weeks, but found great comfort
in letting go of suffering and moving on to a
better place. She will be missed by loving sisters, brother-in-laws,
mother, father, Annette, Sheila, Kaz,
Joel, nieces, nephews, godson, and husband.
Thanks to all for providing her with information, humor, comraderie, and love.
Husband, Rob Peters
|
Charlie Laycock from R I passed away last night. He was Transplanted June 15, 2000
|
On Monday, July 23rd, 2001, Susan passed away in her sleep
due to complications from COPD. Her viewing was the evening
of July 25th, and the funeral was at Holy Cross Cemetery in
North Arlington, NJ on July 26th.
We are deeply saddened by Susan's passing, but we recognize
that she has struggled very hard for many years with chronic
illness. We take some comfort in the fact that her struggles
and pain are over.
OUR PRAYERS HAVE ALL BEEN ANSWERED
I FINALLY ARRIVED
THE HEALING THAT HAS BEEN DELAYED
HAS NOW BEEN REALIZED.
NO ONE’S IN A HURRY
THERE’S NO SCHEDULE TO KEEP.
WE’RE ALL ENJOYING JESUS-
JUST SITTING AT HIS FEET.
IF YOU COULD SEE ME NOW-
I’M WALKING STREETS OF GOLD.
IF YOU COULD SEE ME NOW-
I’M STANDING TALL AND WHOLE.
IF YOU COULD SEE ME NOW-
YOU’D KNOW I’VE SEEN HIS FACE.
IF YOU COULD SEE ME NOW-
YOU’D KNOW THE PAIN’S ERASED-
YOU WOULD’NT WANT ME TO EVER LEAVE THIS PLACE-
IF YOU COULD ONLY SEE ME NOW.
MY LIGHT AND TEMPORARY TRIALS HAVE WORKED OUT
FOR MY GOOD.
TO KNOW IT BROUGHT HIM GLORY WHEN I MISUNDERSTOOD.
THOUGH WE’VE HAD OUR SORROWS,
THEY CAN NEVER COMPARE.
WHAT JESUS HAS IN STORE FOR US,
NO LANGUAGE CAN SHARE.
IF YOU COULD SEE ME NOW-
I’M WALKING STREETS OF GOLD.
IF YOU COULD SEE ME NOW-
I’M STANDING TALL AND WHOLE.
IF YOU COULD SEE ME NOW-
YOU’D KNOW I’VE SEEN HIS FACE.
IF YOU COULD SEE ME NOW-
YOU’D KNOW THE PAIN’S ERASED-
YOU WOULDN’T WANT ME TO EVER LEAVE THIS PERFECT
PLACE-
IF YOU COULD ONLY SEE ME NOW.
Mitch Davey - Lung transplant - 6-4-98
|
![]() |
STARKE -- Mitchel Edward Davey died Wednesday
at
Shands at the University of Florida following
an
extended illness. He was 44.
Mr. Davey was born in Burlington, N.C., and
moved to
Starke from Gainesville three years ago.
He was a member of the World Wide Church of
God, where
he served as an elder, a minister and a member
of the
Second Wind support group.
Survivors include his wife, Tina Jean Howland
Davey of
Starke; a son, Timothy Woodrow Butler of Smyrna,
Tenn.; his parents, Grady and Carolyn Williamson
of
Starke, brothers Michael William Davey of
Dandridge,
Tenn., and Martin Eric Davey of Starke; and
a sister,
Karen Lenora Redmon of Florida.
"Now You See Him...Now You Don't"
Written by Mitch Davey # 73 / 07-08-2001
Dear Family,
In 2Timothy 1:8a we read
"So do not be ashamed to testify about our Lord." It's sounds strange that
a person would be timid in talking about Jesus, but we all are at times.
When I meditate on all the Many things that God has done for me I feel
all warm and tingly inside : ).
It also lights a flame in my heart to share
such treasures with others. So many times I speak only of my burdens.
Last night, while focusing
on getting to sleep, God moved me to pray.God doesn't require us to bend
our knees while praying, just to bow our heart. My mind raced to the e-mails
of the day and the many prayer request of the week. All of them that God
brought to my mind, we talked about. In my heart I knew, that no matter
how God answered each prayer, it was for the best. For God always works
in perfect Love.
The last thing that I recall
there was this strange liquid substance coming from my eyes? No, it wasn't
Chocolate syrup. Yes, I do enjoy the dark nectar but it has yet to infiltrate
my tear ducts : ). In time : ).
Seriously, we hurt when someone we love hurts,
don't we? I hurt when I'm out of Chocolate too : ). The tears were not
all tears of pain, but also of joy. God gives us comfort when we pray,
regardless of the circumstances, simply by being there.
At some point during the
night I woke up and my mind was filled with sweet memories of God's deliverance.
God had me meditate on the time that my brother and I made biscuits out
of rat poison. We were young and it looked liked flour to us......why we
were rushed to the doctor's office I'll never know : ). We told them that
we didn't eat any of it. I heard my Mom ask the doctor if she should give
us any thing just in case and (I still remember this) he told her, "perhaps
a whack or two with a paddle." Some doctor!
God had saved us from eating
our own deadly cooking and from our parents wrath. We were spared the whipping....this
time too: ). Soooo many times God rescued me during my adolescent years.
I am certain that it is far more times then I know of. Angels were forced
to work overtime on this boy. I hope that we can let bygones be bygones
in heaven : ).
As the years traveled through
my mind I recalled how God had saved me from many dangerous times while
hitch hiking cross country. I had been picked up by drunk drivers, thieves,
drug addicts, a man with a rifle between he and me, and also just your
run of the mill trouble makers and self appointed race car drivers : ).
God had saved me several
times when I had nothing to eat and no money. When sleeping on the road
or out in the cold. When all looked hopeless and life seemed more like
torture, than a blessing. Logically, there is no way that I could still
be here except through miraculous intervention. I was out of control on
the open sea of life with my sails set for a course of self destruction.
Shipwreck was inevitable. Fortunately, Jesus "reached down from on high
and took hold of me; he drew me out of deep waters." Psalm 18:16 NIV.
I was lost at sea and shipwrecked
on The Island of Despair. It was there that I found Jesus, or better yet,
He found me. When I pray & think about those of you suffering (including
myself : ), I know that it is not in vain. All I have to do is to think
back on what God has already done for me and trust that His Love for us
ALL is the same today....perfect, unconditional, and everlasting. "For
He has not despised or disdained the suffering of the afflicted one; he
has not hidden his face from him but has listened to his cry for help."
Psalm 22:24.
How about you? As I wrote
in the title, do you see God in your life today or does He seem especially
inconspicuous of late? Do you wonder where He has gone and why? Will He
be back soon or was He ever really there? Did He simply go out for a loaf
of bread or is He in some far away place where He is needed more? God is
not limited by time nor space. He created them both
and has complete control over them.
As I have often quoted
from Hebrews 13:5 "God has said, "Never will I leave you; never will I
forsake you", so rest assured that God can handle all of the world's troubles
and is still VERY, VERY, concerned about yours too. God doesn't desert
you in your time of need. God is omnipresent meaning that He is present
in all places at the same time. As the Psalmist wrote "Where can
I go
from your Spirit? Where can I flee from your
presence? If I go up to the heavens, you are there; if I make my bed in
the depths,
you are there. If I rise on the wings of the
dawn, if I settle on the far side of the sea, even there your hand will
guide me, your right hand will hold me fast. Ps 139:7-10. If
you're in the "now you don't" part of the "now you see Him now you don't",
just think
back to when you did. Recall and meditate
on those times that God intervened in your life. Perhaps in a very BIG
way(s) (an unexpected financial blessing, a health issue, a marital issue,
a lung transplant, or even with your children e.g.) or in something seemingly
less spectacular.
How about those simple
moments of joy that moved you to tears : ). Perhaps something a small as
a bird singing as you sat on your porch? Passing a test, the right
words at the right time, a hug from a friend or stranger, someone praying
for you, or an
elderly lady slipping you a ten dollar bill
at church. I've been blessed to experience them all and more. Or
maybe you have
received unexpected roses from your neighbor
: ). God inspired those things, for all good things come from above...from
Jesus : ). The "simple" things in life can be very spectacular, can't
they : )? The spectacular things in life are very simple for God
to do.
We need both at times, and God provides. These
are not mere coincidences but the love of God at work in your life and
in mine. They are reminders that God is nearer than we think.
If God seems terribly quiet
in your life this day, then lay back down and be very still. Shut out the
noise of the air-conditioner, the
refrigerator, tie up the kids (just kidding,
smile), and turn off the TV and just listen....He is there...., He's always
there : ). Take a walk in the cool of the morning or gaze up at the heavens
during the night. Notice the celestial fireworks that God provides and
then tell me that you can't see Him : ). As
Psalm 19:1 tells us "The heavens declare the glory of God; and the firmament
sheweth his handywork."
It is the devil who seeks
to blind us from the love of God. It is satan who wants you to "feel" that
God has left you. The devil says
"Look at all the trouble in this world....there
is NO God!" Yet the devil knows that there is a God for the bible tells
us "You believe
that there is one God.
Good! Even the demons believe that--and shudder."
James 2:19. Let us not mistake feelings for the facts. When darkness
rolls into
your life, or on those days when the clouds
of despair rain on your parade, talk with Jesus. Don't walk, but RUN to
Him with all of your burdens, hurts, and tears. He IS Able, and He delights
in giving us comfort on those rainy days. Jesus can make the darkness like
the light of day (Acts 26:18). Jesus says in Acts 8:12 "I am the
light of the world. Whoever follows me will never walk in darkness, but
will have the light of life." God doesn't promise us a trouble free
life but He does promise to walk us through them. To never leave us, and
to be our spiritual flashlight all the way from here to eternity. God doesn't
play hide-n-seek with us. It's never a "now you see Him-now you don't"
with God. He's always there and always will be.
It is satan who would blind
us to the light of God. That's why our memories are so important. If you
don't see God in your life this day, think back to that last prayer spoken
for you, a hug, a note of encouragement that you received, a phone call
from a friend, or perhaps a few roses on a blue day : ). All of these things
are gifts from above. How about it....Now you see Him : )? Hope so : ).
As always written by a
fallible human being under the influence of the Greatest love of all.
My love to you all,
Ponderings.........http://www.sharingthelight.com/pgs/Ponderings.htm
Lung Transplant Case Shows Bone Loss To Be Reversible..........http://www.annieappleseedproject.org/bonlosrevwit.html
UF STUDY: Weight-Training reverses Transplan Patient's bone loss.....http://www.napa.ufl.edu/2001news/lung2.htm
When the Cross gets to heavy.........http://members.boardhost.com/emotions/msg/14.html
http://members.boardhost.com/emotions/msg/15.html
The last part of the sermon.........http://www.members.boardhost.com/emotions/msg/16.html
University of Florida Medscape wire........
http://news.medscape.com/MedscapeWire/1998/10.98/medwire1015.weight.html
|
Many of you who follow cystic-l will already
know this but Fred Hayward passed away last Thursday evening.
After 2 years of waiting he received a great
set of new lungs on June 24. Unfortunately there were major
complications resulting from the transplant
and after fighting all his life, he was simply overwhelmed by stroke, infection
and renal failure. He died peacefully and I was with him through
to the end.
He was an inspiration to a lot of people (he
loved playing tennis so much he carried his oxygen on his back just
so he could play; last summer he was working
on the roof of our house with a 100'oxygen hose to keep him
going) and will really be missed.
Life is meant to be lived to the full.....
Claudia Hayward
(Fred's wife and best friend of 28 wonderful
years)
|
I received very sad news from Denmark today.
Our dear friend Mette Stibolt died Saturday night.
My heart aches. Despite Mette and I being
so far from one another, her struggles were my struggles.
Many of the 2nd Wind chatters know Mette as
"Cirkeline" which is a cartoon
character in Denmark, that was so like Mette.
A lovely woman who had Cystic Fibrosis, a lung
transplant 1 1/2 years ago. But she lived her life to the
fullest since then and never regretted her
decision to have a lung transplant.
We will miss "Cirkeline", our dear Mette.
Joanne Schum
WHAT THE WORLD NEEDS NOW
Suppose one morning you never wake up, do all
your friends know you
love them? I was thinking...I could die today,
tomorrow or next week and
I wondered if I had any wounds needing to
be healed, friendships that
needed rekindling or three words needing to
be said.
Let every one of your friends know you love
them. Even if you think they
don't love you back, you would be amazed at
what those three little words
and a smile can do.
God forbid I die tomorrow.....I LOVE YAH!!!
|
I am writing this morning with great sadness
in my heart. I lost my beloved Ken at 11:55 pm last night.
He went very peacefully and was totally in
a comfortable state. That does not make it hurt any less
for me but I am so blessed to have had the
29 years that we had.
Thank you all for listening to me and giving
me strength and guidance. I do truly appreciate it. Be sure you
all tell your loved one how much you love
them everyday and hug them as often as possible. It is
so important to you both. I know it was for
us...He squeezed my hand right before he passed
when I told him I loved him. And he had been
basically unresponsive for over 2 days. So that means alot..
We will talk more later
Take Care and God Bless you all.
Judy In California
|
We are not ok. Brian passed away on Monday
night. He had no lungs left and just wore out. He had been
on the bi-pap continuously since the
weekend after he had been moved back to ICU. That should have been
a sign for me. I continued to hope he
would get better. He was started on thymoglobulin on Thursday and we
were hoping it would change things. It didn't.
Monday afternoon the doctor came and told Brian's mother and
I that the bi-pap was now basically life support.
I almost collapsed. We had done everything possible to try
to get him well. It wasn't going to. In fact,
things were probably going to get worse.
We promised Brian that we would use no
life support. It was time to honor that promise. It was the hardest
thing I have ever done in my life. His Mother
and I agreed that it was time to carry out Brian's wishes. Brian's
sister and brother live out of state and wouldn't
have time to get here. I wanted to have my family there
so
we were going to wait for them to arrive
and say their goodbyes.
My family arrived and we explained the situation
to them. They didn't like it but understood it had to be done.
I didn't like it either but there are
some things in life that you can't avoid or change. The bi-pap was removed
at 7 p.m. and the monitors in the room
were turned off. The nurses at the station outside could still use theirs.
He was given some morphine and we (Brian's
mother, my mother and I) sat at his side. I held one hand and
his mother held the other. He faded away and
was gone about an hour later. He was at peace and was
breathing freely.
I have no regrets. We had a wonderful life
together. Brian did everything he wanted to do post transplant.
He rode bikes, played golf, worked full time
for 4 years at a job he was great at. We had a cute little house
and we had each other for 5 years. That was
the greatest gift we have received besides our lung transplants.
New lungs brought us together.
I did have one regret that I did fix. We never
had a wedding ceremony. Brian said he would never wear a
wedding ring. I never pushed him on that.
I realized that when he was first in ICU 12 days ago when we
thought we were going to lose him. Some of
his friends were in the waiting room and I sent them on a
"mission" to find me a gold wedding
band. They came back and after Brian's mother arrived, we,
my parents, and I and his mother, went into
his room and I gave him the ring. I told him that I loved
him forever, would never leave him and would
get him through this, whatever happens. He nodded
through the bi-pap. He wore the ring
for a week. When he was awake he would point to the ring on his
finger and nod to show it to people.
I'm wearing it on my left hand middle finger where it fits, next to the
rings he bought me.
There have been no arrangements made yet. I
can't think that far ahead yet. He didn't want a funeral,
but I think some sort of celebration will
be planned for sometime in the near future.
I'd like to thank everyone for their generous
cards and emails of support. Brian may not have been
very aware of them but they mean a lot to
me.
I don't want those of you out there waiting
for transplant to be scared off by Brian's story. He had a
wonderful life and would do it again in a
heartbeat. Let him be a motivation and inspiration to strive for.
If he hadn't had it, he would have been gone
6 years ago and not accomplished so
much and been so happy. Nor would I.
peace, love and laughs
holly tringl
hollydolly@aol.com
|
Olivia Tremont, the 23 month old daughter of
Kathi and Kenny Tremont Jr., West Sand Lake, NY, remains in
critical condition at Pittsburgh's Children's
Hospital following dual lung and heart transplant surgery. It will be two
weeks, on the Fourth of July, that Olivia
was rushed to Pittsburgh for life saving transplant surgery to replace
her
diseased organs. Olivia was given less than
a year to live due to a rare lung condition called "Primary Alveolar
Failure" and a weakened condition due to holes
in her heart.
An eleven month old donor from Mississippi
died in an automobile accident but provided life saving organs for
Olivia Angel Tremont and another baby, Angel
Ruiz, who was also waiting for an organ donor at Pittsburgh's
Children's Hospital.
Olivia is fighting infection and organ rejection
and is still in critical condition. Tests later this week will show if
her
body is accepting the organs. She may also
have to have surgery to correct the chest muscles cut during the
transplant. This may help the baby to begin
breathing on her own thus allowing Doctors to remove the ventilator
tube that allows her to breath now.
After the initial transplant surgery, Doctors,
upon inspecting Livvies diseased organs, felt that she probably
received the transplant "just" in time as
her condition would have worsened dramatically this summer.
Olivia's second birthday is July 30th.
![]() |
Secondwinders,
If you are part of the pediatric chat, you
know about young Olivia Tremont of New York State.
Very sad news I just received tonight, Olivia
died this morning.
Please keep this young 2 year old's family
in your prayers. Seems so unfair, she battled all her life and
her parents were very hopeful.
She can rest now and breath easily on her
own now.
Joanne Schum
Tremont, Olivia Angel Grace WEST SAND LAKE
-- Olivia Angel Grace Tremont, 2, of Sheer Road, died
Tuesday at Children's Hospital, Pittsburgh,
PA after receiving a heart and lung transplant. Born in
Schenectady, NY, she was daughter of Kenneth
E. Tremont Jr. and Kathleen M. Sprague Tremont of
West Sand Lake. Survivors, in addition to
her parents, include four brothers, Ryan Tremaine of Boston,
Mason Brown of West Sand Lake, Kenneth J.
Tremont of West Sand Lake and Kale Tremont of West
Sand Lake; her maternal grandparents, Marilyn
and James Sprague of Clay, NY; her paternal
grandparents, Anne and Kenneth Tremont Sr.
of West Sand Lake; her Godparents, Colleen Phinney
of Baldwinsville and Brian Bedell of Nassau;
and several aunts, uncles and cousins.
Funeral service will be held Saturday at 11:00
a.m. from St. Henry's Church in Averill Park where a Mass
of Christian Burial will be celebrated. Relatives
and friends may call at the Bryce Funeral Home
Inc., corner of Pawling Avenue at Maple Avenue,
Troy, Thursday and Friday from 3-8 p.m.
Contributions may be made in memory of Olivia
to the Albany Medical
Center Children's Hospital A119, Development
Office, 43 New Scotland
Avenue, Albany, NY 12208.
|
My dear Jim, the love of my life, passed away
tonight at 9:30.
Thank you all so much for all the help and
support I have received from you.
Lynda
|
Hi everyone just wanted to let you know that
my husband passed away in his sleep yesterday morning.
I am still in shock, he was doing pretty good
and had been off the cigarettes for four months, and was
using the gum which helped him stay off them
so he was feeling much better, but it did not stop the disease.
Take care, Sarah
Sarah from NY
|
This is Nancy Erickson's son, Kyle. I'm sorry
to let you know that mom passed away this morning at the
local Hospice facility. Her condition was
worsening rapidly over the past few weeks, and then on last Thursday,
she got so bad that Hospice recommended having
her under total sedation 24 hours a day to negate her constant suffering.
She stayed at home until this morning when we transferred her to the Hospice
facility so they could
have control over her passing.
Thank you for your kindness and support towards
mom over the course of your friendship with her.
Kyle Erickson
|
If Tomorrow Comes Without You..
When tomorrow starts without me,
And I'm not there to see, If the sun should rise and find your eyes All filled with tears for me; I wish so much you wouldn't cry The way you did today, While thinking of the many things, We didn't get to say. When tomorrow starts without me I know how much you love me, As much as I love you, And each time that you think of me, I know you'll miss me too; Please try to understand,
But as I turned to walk away,
I thought of all the yesterdays,
|
I'd say good-bye and kiss you
And maybe see you smile. But then I fully realized, That this could never be, For emptiness and memories, Would take the place of me. And when I thought of worldly things, I might miss come tomorrow, I thought of you, and when I did, My heart was filled with sorrow. But when I walked through heaven's gates,
I promise no tomorrow,
But you have been forgiven
|
|
Ami's Life's a Bowl o'Cherries
http://www.geocities.com/tory_steller/
"Do not regret growing older, it is a privilege denied to many"
|
Barbara survived LVRS - Lung Transplant - but, died of Lung Cancer
|
He was a member of the Second wind group and
he would like for all of you to know this. We all knew he
was trying to get on a Double-Lung Transplant
list. He had been going to Cleveland Clinic for tests for
almost 3 years. Within the last year his health
had been declining so rapidly, that he visited the hospital
3 times in 8 months. On August 1, he was taking
to the hospital because he was having a hard time
catching his breath. About a week later, we
were told that this was it, he needed to be put on a vent.
The doctors told us that after awhile, he
would have a TRACEOTOMY. He was doing so good.
We got the word last Friday that his body
has given up the fight. And that we had a few days to
spend with him. Tuesday morning he was able
to have his early morning coffee with God.
"Whatever the mind can conceive and believe, it can achieve."
- - - -Napoleon Hill
|
"Death is not the enemy; living in constant fear of it is."
~ Norman Cousins
|
"Cherish the memories of yesterday.
Savor the joys of today.
Nurture the promise of tomorrow."
|
Your Inspiration: No Worries
If we fill out hours with regrets of yesterday
and with worries of tomorrow,
we will have no today in which to be thankful.
Turn your face to the sun
and the shadows will fall behind you.
|
|
Jennifer (*-*)
Don't take your organs to
Heaven......
Heaven knows we need them
here!
From: lujngott@aol.com
Sent: Saturday, September 15, 2001
3:16 PM
Subject: About Lou Gott
please post the following for me:
My family and I wish to thank all
of the 2nd winders who have expressed their condolences about
Lou's passing. He so enjoyed the
group and it was always a big help to know that someone had
an answer to any question that we might
have. He had such a great sense of humor that he
obviously shared with all of you.
He fought a long and difficult battle - he would want all
of you to SHAKE IT OFF AND STEP UP,
as he did for so long.
Some of you have asked questions
- Lou had not had a transplant. The nodule that was found in
his right lung just about a month ago,
grew very aggressively and was not fungus as they
had first thought, but was small
cell cancer. If there is anything else that you would like to
ask, please feel free to email me.
Thank you all again - so much.
Here also is an email from a meber of a newsgroup I belong to:
Subject: Today's Events
Date: Tuesday, 11 Sep 2001 00:04:03
-0700
From:
Melissa Reta <mooselungs@HOTMAIL.COM>
This is all very surreal to me, as I am sure
it is to others. Being 27, I have not lived through the tragedy of war.
We did have the Gulf when I was in high school,
but I was not really effected by that. That was totally different than
what has happened today. It shocks and saddens
me to think of what is to come. I really can not comprehend it
at all. The visuals that we are seeing
on TV seems like it is in another country, not here, not us. This
in not a
Hollywood sound stage, this is real life,
and I am having a hard time with that. It is hard to think that this is
just
the beginning of what is an unknown that will
effect each and every one of us, and that we are not as safe as I
thought. I thought I had come to terms
with the fact that life is short, and can stop at any time, but I never
expected this. I hope that we all have our
families close to us tonight. This is yet another reminder that we
need to let the people in our lives know how
we feel. Life is short, and some things can not be put off until
tomorrow. Prayers with you all, and
your loved ones, and the thousands of families that are feeling the loss
of this horrible day in history. Land of the
Free, Home of the Brave
Melissa
- - - - - - - - - - - - - - - - - - - - - -
- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -
- - -
In memory of all those who perished; the passengers
and the
pilots on the United Air and AA flights, the
workers in the World
Trade Center and the Pentagon, and all the
innocent bystanders. Our
prayers go out to the friends and families
of the deceased.
If I knew
If I knew it would be the last time
That I'd see you fall asleep,
I would tuck you in more tightly
and pray the Lord, your soul to keep.
If I knew it would be the last time
that I see you walk out the door,
I would give you a hug and kiss
and call you back for one more.
If I knew it would be the last time
I'd hear your voice lifted up in praise,
I would video tape each action and word,
so I could play them back day after day.
If I knew it would be the last time,
I could spare an extra minute
to stop and say "I love you,"
instead of assuming you would KNOW I do.
If I knew it would be the last time,
I would be there to share your day,
well I'm sure you'll have so many more,
so I can let just this one slip away.
For surely there's always tomorrow
to make up for an oversight,
and we always get a second chance
to make everything just right.
There will always be another day
to say "I love you," and certainly there's
another chance to say our "Anything I can
do?"
But just in case I might be wrong,
and today is all I get,
I'd like to say how much I love you
and I hope we never forget.
Tomorrow is not promised to anyone,
young or old alike,
And today may be the last chance
you get to hold your loved one tight.
So if you're waiting for tomorrow,
why not do it today?
For if tomorrow never comes,
you'll surely regret the day,
That you didn't take that extra time
for a smile, a hug, or a kiss
and you were too busy to grant someone,
what turned out to be their one last wish.
So hold! your loved ones close today,
and whisper in their ear,
Tell them how much you love them
and that you'll always hold them dear
Take time to say "I'm sorry,"
"Please forgive me," "Thank you," or "It's
okay."
And if tomorrow never comes,
you'll have not regrets of today.
Joanne Schum
luckylungsforjo@aol.com
Second Wind Lung Transplant Assoc Inc,
Time to give next of kin a real say about autopsies
![]() |
Thu, 16 Aug 2001 22:17:50 -0400
Randall is now out of surgery and resting
comfortably. His heart is beating normally and his lungs are functioning
at
100% capacity. His family is tired but very
optimistic. Randall's color is good and he is in an induced coma.
They will
wake him tomorrow. Please keep Randall in
your prayers. He is not out of the woods yet.
Sun, 19 Aug 2001 14:46:49 -0700 I just
spoke with Randall's wife. He is doing ok. He had a mild stoke, but is
recovering. He can move his limbs. He
has been off the vent for a short time and he did just fine breathing on
his own, but they have continued the vent,
so that he can get more rest, and get stronger. His wife is tired, but
sounded good, and very positive.
Thu, 23 Aug 2001 15:44:09 -0400
Randall has been weaned from the vent. He
has his chest tubes out and he is walking and talking! He also has
been sitting in a chair. I am so excited for
him. I hopehe can be seen soon.
Sat, 25 Aug 2001 18:33:01 -0400
Randall is in a room now (since yesterday)
doing well heart and lung wise but having a little trouble from the
small stroke he had. He is not allowed
to eat or drink yet and it is a tad irritating for him. Also he is
left
handed and the stroke was on the left side.
Thu, 30 Aug 2001 12:40:08 -0400
We have raised over 1,000 for Randall and
with the money COTA( Children's Organ Transplant Association)
has raised this leaves us about 22,000 short
of his lifetime goal but is a wonderful effort. Local fundraising will
continue for Randall but I was amazed to see
about 80% of the money came from people associated with Second
Wind. I know you all have your own financial
needs and I just want to say thanks! Randall had visitors last
night
and he is doing well. He will have vocal cord
surgery on Friday and if all goes well will get out of the hospital
early next week. Praise God! If
you would like to help with Randall's expenses, you can send a check or
money order to:
COTA for Randall
c/o COTA
2501 COTA Drive
Bloomington, IN. 47403
Tue, 4 Sep 2001 07:07:53 -0400
Randall is feeling better. His vocal cord
surgery went well. He is still NPO (no food or water orally. Just iv.)
but
hoping soon this will change.
Mon, 17 Sep 2001 09:17:31 -0500
Randall was to be released from hospital to
go to his apartment, when he started having seizures. He is in ICU
and they put him in an induced coma.
Please keep him and his family in your prayers.
Date: Tue, 18 Sep 2001 04:31:24 -0400
Randall Benifield died of an infection at
UNC hospitals. Just talked with his Mom Annette.
They have agreed to an autopsy to determine
cause of death.
Cards can be sent to :
Debbie Benifield
C/O Annette Benifield
11619 Pontiac Place
Huntersville,NC 28078
Funeral arrangements will follow.
Donations, In lieu of flowers may be sent to
Second Wind Lung Transplant Association
300 South Duncan Ave, Suite 227
Clearwater, Fl 33755
Annette said they would welcome calls of condolence at 1-704-875-2106.
Randall's arrangements.
Visitation is Friday 7-9 and the memorial
service is Saturday at 1pm.
Gospel Way Baptist church
10435 Kerns Rd
Huntersville, NC 28078
(704) 875-1822
|
Remember there's no such thing as a small act
of kindness. Every act creates a ripple with no logical end.
- - - - Scott Adams
If I be the first of us to die,
Let grief not blacken long your sky.
Be bold yet modest in your grieving.
There is a change but not a leaving.
For just as death is a part of life,
The dead live on forever in the living.
And all the gathered riches of our journey,
The moments shared, the mysteries explored,
The steady layering of intimacy stored,
The things that made us laugh, or weep or
sing,
The joy of sunlit snow or first unfurling
of the spring,
The wordless language of look and touch,
The knowing.
Each giving and each taking,
These are not flowers that fade,
Nor trees that fall and crumble,
Nor are they stone.
For even stone cannot the wind and rain withstand
And mighty mountain peaks in time reduce to
stand
What we were, we are.
What we had, we have.
A conjoined past imperishably present.
So when you walk the woods where once we walked
together
And scan in vain the dappled bank beside you
for my shadow,
Or pause where we always did upon the hill
to gaze the land,
And spotting something, reach by habit for
my hand,
And finding none, feel sorrow start to steal
upon you,
Be Still.
Close your eyes.
Breathe.
Listen for my footfall in your heart.
I am not gone but merely walk within you.
When an old lady died in the geriatric ward
of a small hospital near Dundee, Scotland, it
was felt that she had nothing left of any
value.
Later, when the nurses were going through her
meagre possessions, they found this poem.
Its quality and content so impressed the staff
that copies were made and distributed to
every nurse in the hospital.
One nurse took her copy to Ireland. The old
lady's sole bequest to posterity has since
appeared in the Christmas edition of the News
Magazine of the North Ireland Association
for Mental Health. A slide presentation has
also been made based on her simple, but
eloquent, poem. And this little old Scottish
lady, with nothing left to give to the
world, is now the author of this "anonymous"
poem winging across the Internet. It goes to
show that we all leave "SOME footprints in
time".....
What do you see, nurse, what do you see?
What are you thinking when you're looking
at me?
A crabby old woman, not very wise,
Uncertain of habit, with faraway eyes
Who dribbles her food and makes no reply
When you say in a loud voice, "I do wish you'd
try!
Who seems not to notice the things that you
do,
And forever is losing a stocking or shoe...
Who, resisting or not, lets you do as you
will,
With bathing and feeding, the long day to
fill....
Is that what you're thinking? Is that what
you see?
Then open your eyes, nurse, you're not looking
at me.
I'll tell you who I am as I sit here so still,
As I do at your bidding, as I eat at your
will.
I'm a small child of ten...with a father and
mother,
Brothers and sisters, who love one another.
A young girl of sixteen, with wings on her
feet,
Dreaming that soon now a lover she'll meet.
A bride soon at twenty--my heart gives a leap,
Remembering the vows that I promised to keep.
At twenty-five now, I have young of my own,
Who need me to guide in a secure happy home.
A woman of thirty, my young now grown fast,
Bound to each other with ties that should
last.
At forty, my young sons have grown and are
gone,
But my man is beside me to see I don't mourn.
At fifty once more, babies play around my
knee,
Again we know children, my loved one and me.
Dark days are upon me, my husband is dead;
I look at the future, I shudder with dread.
For my young are all rearing young of their
own,
And I think of the years and the love that
I've known.
I'm now an old woman....and nature is cruel,
'Tis jest to make old age look like a fool.
The body, it crumbles, grace and vigour depart,
There is now a stone where I once had a heart.
But inside this old carcass a young girl still
dwells,
And now and again my battered heart swells.
I remember the joys, I remember the pain,
And I'm loving and living life over again.
I think of the years....all too few, gone
too fast,
And accept the stark fact that nothing can
last.
So open your eyes, nurse, open and see....
Not a crabby old woman; look closer...see ME!!
Remember this poem when you next meet an old
person who you might brush aside without
looking at the young soul within.
We will one day be there!!!!
|
Looking back, it's hard to believe that we
have lived as long as we have. As children we would ride in cars
with no seat belts or air bags.
Riding in the back of a pickup truck on a
warm day was always a special treat.
Our baby cribs were painted with bright colored
lead based paint. We often chewed on the crib, ingesting the paint. We
had no childproof lids on medicine bottles, doors, or cabinets, and when
we rode our bikes we had no helmets. We drank water from the garden hose
and not from a bottle. We would spend hours building our go-carts out of
scraps and then rode down the hill, only to find out we forgot the brakes.
After running into the bushes a few times
we learned to solve the problem.
We would leave home in the morning and play
all day, as long as we were
back when the streetlights came on. No one
was able to reach us all day.
We played dodgeball and sometimes the ball
would really hurt. We ate cupcakes, bread and butter, and drank sugar soda,
but we were never over weight; we were always outside playing. Little League
had tryouts and not everyone made the team. Those who didn't had to learn
to deal with disappointment. Some students weren't as smart as others or
didn't work hard so they failed a grade and were held back to repeat the
same grade. That generation produced some of the greatest risk-takers and
problem solvers. We had the freedom, failure, success and
responsibility, and we learned how to deal
with it all.
Sorry to send this by email, but wasn't sure
how else I could let you all know.
I am Nansi Greger-Holt, daughter of Dody Holt.
Just a brief note to let you know that my Mom died last Thursday, September
27 peacefully in our/her home.
Dody had a bad COPD flare since Labor day, that we could not break with steroids and antibiotics. Since going to the hospital would only cause her more suffering with a very very slim chance of improvement, we decided to have Mom stay at home and we got Hospice who also helped us take care of her.
Dody was a fighter and fought her battle with COPD, Ovarian cancer and severe hearing loss with much bravery
I thank all of you who gave her a connection to the outside world through email. Your support was greatly appreciated.
In lieu of flowers donations can be made to:
Duke Gynecological Cancer Reseach
c/o Andrew Berchuk, MD
Box 3079
Duke University Medical Center
Durham NC 27710
Nansi Greger-Holt
I enjoyed your letter Olivija.
You do alot of good for me and others. My feelings are similar..
I was dx'd in 87 with the
Doctor giving me only 3-5 yrs to live.
I attended my sisters funeral before months later understanding what she
died with,
(Alpha -1), receiving notice from her
attending Doc that I should come in to be tested for Alpha-1..
I was living happily alone at the time,
running a very busy business with way too much stress & lots of wonderful
friends
in Denver, Co. My goodness the changes
I had to go through to change my life style according to the doctor's wishes.
I had to move to sea level & pursue
a much safer occupation. It was becoming increasingly more
difficult to breathe
& earn income. I moved to Ca. in
88, so VERY ILL & ALONE. I was able to start a new business
after resting by
the ocean for a few months. I bounced up again.
Eight years ago, I began sleeping my days away
&I had to undergo an emergency hysterectomy for severe pain,
alone
again I might add.
I was unable to bounce back up as I had
so many times before. It was at this time when I was placed
on 02. I no longer
was able to work anymore at the business that
I created &loved so much.
It was at this time that GOD sent me a fabulous
human being that took over from there. He was the same person that
set me up with 02. I felt so good that
I told him to be sure and bring me a backpack so that I could play tennis
again
..LOL....(he laughed silently at this)
..He was & is a very smart, calm &
humble person with fabulous listening skills. I only learned much
later just how talented
he was in so many areas..
Shortly after meeting him, my Condo had a fire
while I was taking a bath and my he was back in his home state,
New Orleans, La., with his father who was
dying from Cancer.
27 Firemen saved my life. The fire
climbed up my nasal canula while I was in the bathtub. The fire started
in my 02
concentrator at the time. I had no time
to dress & unable to get 02.
There were only seconds to move to my hall
phone and call 911. I then headed for my balcony again not
dressed and
nothing to throw around me.
I was as far out on the balcony climbing over to jump when I heard a fireman screem for me to"Get back".
I can understand so well why so many
people at the trade center jumped. When your only other choice is
to burn up
alive. No one else can really identify with
this unless they've lived through one. I learned how much help the
Red
Cross was then. Alot of help but
it only lasted for 10 days.
I also learned ALOT of dangers with some of
these assisted care facilities that I ended up in for a few months while
I was
alone and vulerable.
My friend returned a few months later
to literally rescure me from a dangerous living situation and began his
8 yr.
campaign to get me well. He gave me
his 200% focus and undividing attention. He was & still is very much
determined to enjoying a long happy llife
with me.
After my fire I literally went through
several years when I could ONLY pray to continue living 5 minutes
at a time.
I always hid this from Perry as best I could
so as not to scare him off. I would go into deep comotosed
sleep modes,
(probably due to too much smoke getting into
my lungs)
I couldn't even have a telephone as the ring
or anyone talking would make me so very sick. I needed complete quiet.
We moved to a place as far north as
possible where the closest store was 45 minutes away. I needed to
get ready
for a lung TX.
This was 7 yrs ago now. I was approved for
a TX list but we were not readyfor that yet. Perry & I changed
everything
about our life as quickly as possible.
He is a gormet Chef which I attribute much to my success in health.
Only
healthy foods. We eliminated all outside
stresses and simplified our lifestyle as much & as quickly as
possible.
Perry did the constant cleaning that is required
and worked to build a tranqual & healing place for us to call home.
He
allowed me to be the supervisor and he
utilize his body to do all the work needed. I think deep inside each
of us, we
know what we need to do to get well.
So many of us just need one hand to reach out
& pull us up. Some of you have been blessed with many of
these
special people and I was blessed with one....
I've watched people that I became very close
to that I knew I could save their life if only they could move in with
me so that I could share my world with them
but I just couldn't put anymore on Perrys plate. He was at his
limit capacity. This is the difficult
part through the years.
Now we are living the life style that I &
we have worked so hard to achieve. The most slow and gradual
improvements that a snail would do better.......BUT
there were constant & continual improvements through
the years.
I love and am the happiest that I've
probably been in my entire life. I appreciate so much every second,
every
nice thing that someone does for me.
I have a contentment of feeling as though I have finally reached the top
of
my mountain.
I've learned how to live a much more quality,
simpler & happier life then ever before. I no longer live 5 minutes
at a time but only think in terms of years
now. The hard work is over but I must stay focused and disaplined
as anyone would who is taking control of a
difficult disease..
Lastly, I am thankful that I have been able
to go through all of the years of this learning process to
finally "GET IT"
......There are so many people who have different
other diseases like Cancer who just don't have this time.
I've learned that everyone gets to this point
at their own time and there is not much that I can do to speed it along
for them except to communicate what has worked
for me.
I'm always surprised to see some people
who are at their last point in this life and not be prepared at all.
Previously
to all of my experiences, I would have
thought they would be kinder, more compassionate, understanding &
appreciative of this life. Some never
do & that is so sad for me to see.
I've read where someone said that it is only
when we learn to die that we finally learn to live and I believe this
to be true....
I hope that my sharing intimate thoughts this morning might help someone out there. It was nice for me. I enjoyed this..
Sincerely,
Charlotte Freemon in San Diego, alpha-1 , not
listed yet.
"Act as though what you do makes a difference..
It does."
Hi All,
It's a beautiful day here in the deep South so I have a suggestion
for you. If it's a nice day in your area, leave the PC
behind a little while, locate the door of your dwelling, go through
it and outside into the fresh air and sunshine. If
necessary, load up the O2 tank, get the cane or the walker, or roll
the wheel chair, but just go. Feel the kiss of the
sun a minute. Maybe you'll feel a little fall breeze, hear a mockingbird
or meadow lark. Head on out in your yard,
down your driveway, or onto the patio. Think back to a time
you sat on the edge of a hospital bed and eyed the
restroom door five or six feet away wondering if you and the IV
stand could make it that far on your own without
calling a nurse. Think of when you finally made it to the
door of your room, leaned against the door frame and
stared down the hallway towards the nurse's station. Looked
a long way off, didn't it. Think back to those times
when you so much yearned just to stand out in the sunshine.
Now, another favor. Think of our COPD friends,
and others, now hospitalized or in treatment centers who would love
to be standing there with you. If you are so
inclined, say a little prayer for them. If you are not a religious
person, then a little wish for them will do nicely.
Take a short walk today or when you can. It will do
wonders for you physically and emotionally.
It's a fantastic world we live in. We should take the time
to enjoy it. Enjoy your stroll, take your time, and take
a closer look at all that is around you. There is something
of worth and beauty to be found almost anywhere.
It just might be that when you come back in, you will bring
with you a touch of a smile, a lighter heart, and feel
more like reaching out to others. Breathe well, everyone,
and smile a bit. I'm going out to see a
butterfly.
Glenn
" Life changes, duties don't, but am having troubles these days keeping up."
I hope you are opening up a new thread, because
you have certainly touched upon some concerns that I have,
and that I hearechoed in comments from others
on the list! COPD changes lives, often very dramatically and very
early! My pulm. doctor (bless him!) talks about my "slight touch"
of COPD, and I perceive it
differently --- have finally got some medication
(Albuterol and Pulmicort inhalers) the first of which is an ENORMOUS improvement,
but nevertheless I am the main breadwinner in my tiny family of two,
and I
am still taking 3 1/2 hr. naps several times
a week, still so lethargic some of the time that I am referring
to almost everything which begins with a "p"
as a "potato" (and this from a former English
teacher yet!), I am frequently out of breath,
have problems with incontenience, coughing and nausea,
am SUCH a slowpoke and find the almost inevitable
depression difficult to handle.
What I am getting at is that I KNOW I need
to redefine what I can reasonably expect of myself,
redefine what my priorities are, most likely
rework or change my environment (simplifying it) and make
sure that I am careful to schedule some time
for joy during the day, every day. I have a feeling that some
of you wonderful EFFORTS members have already
"been there, done that" and I am hoping that you
will share your tips on how to reorganize/simplify/prioritize
for those of us who have not yet figured it
all out.
I am currently looking for a smaller place
to live (rental) which I can take care of more easily, and
I am planning to get rid of much of what I
own. We are going through and rolling up and discarding
rugs to eliminate some allergens while trying
to hang onto the furry allergens that Meow. What
other ideas do you folks have?
When my mother was in her last 2 years of life,
she had just enough energy to try and wash the
dishes, cook and eat 3 meals a day, keep a
7 room house clean, keep her car and her clothing and
herself clean, and take care of her correspondence
and business matters. There was NO time
for any joy - no time for fun -- no time for
anything save duty. I want to rethink what is
necessary and what "has to be done" so that
I can work some pleasure into my life as well.
Plano Dot wrote "Life changes, duties don't,
but am having troubles these days keeping up." Hi Dot, I
agree copd sure changes our lives. One
day I simply collapsed from trying to keep up with a job, house,
tutoring kids, volunteering at two organizations,
and more. My hospital roommate was 91 yrs old and
when I told her how frustrated I was feeling,
she said I was missing the whole point....she lectured me like
no teacher ever could. She told me to
think about all the things I was spending my time on and eliminate
at least half of them. I told her I
couldn't stop any of my activities without letting people down or without
feeling like a failure. She told me
to figure out a substitute activity I could do that could replace each
activity
I could no longer do....so that's what I did.
Instead of going to the school to tutor, the kids come to me; instead
of going to visit lonely folks at the nursing
home, I have a staff member bring them to my place (they love
getting out); instead of doing housework,
the teens I tutor do my chores....................
Having copd or other chronic illness doesn't
have to end our involvement with life...it just changes how we
do things. Sure we don't run anymore,
we don't climb trees, we don't hop-skip across streams.......but that's
all right because now we can slow down and
do some really fun stuff......read a book, watch lots of interesting
things on tv, surf the internet, call a friend,
be available for your kids to visit, host lunches for lonely folks,
teach a kid how to prepare a book report,
help a teen apply for a college loan, make a pot of soup for your
building's maintenance crew, give your postman
a cup of hot cider.......all without leaving your home.
Virginia-Va
While I breathe, I hope
|
LIVING WELL WITH COPD People with COPD usually first notice problems
with breathlessness during
activities such as stair climbing and walking uphill. There is often
wheezing and coughing that brings up mucus.
Over time, breathlessness worsens, sometimes to the point where
dressing and bathing become difficult.
Oxygen levels in the blood may fall and carbon dioxide levels may
rise, which can cause tiredness, poor
concentration and heart strain. The strained heart may enlarge and
lead to swelling of the ankles and legs called edema. People with COPD
are also at risk for coronary artery disease (CAD). COPD and CAD are often
linked because long-term cigarette smoking is one of the biggest risk factors
for both diseases. The ACCP (American College of Chest Physicians) publishes
a patient education booklet with the above title. ANM says it can be read
on the Internet (in large type and easy chapters) at:
http://www.chestnet.org/health.science.policy/patient.education.guides/living_well/body/
Good day to all,
Sometimes I get mail asking me questions that
they somehow don't want to post to the list.
Most of the questions are asked of someone
they know who has had the disease awhile.
Well, that is me. Oh, I know there are
lots out there who have had it longer, but I can only
tell about my experiences. The first
thing I want to say is that we are all different.
In all aspects of the disease the difference
will manifest. So all I am relating here are my
experiences with COPD.
I am in a severe decline and if all my dear
friends whom I use to mail so often, wonder why
I have done only a few group mailings, there
is a reason.
Anyway the reason for this email is that I
have been SOB the entire time through the years
with COPD. I have had good days and
bad days and hellious days. I have had days when
I did not know where the energy would come
from to make another day. Then again some
days were fantastic! The energy level
has slowly gotten worse and worse. I am in a
conserving mode and write less often than
I use to.
Day by day, week by week, month by month,
year by year you see a little more gone. It is
not an overnight killer. It works slowly.
I have lots of love and a positive attitude.
That in itself has kept me going. That my
friends is what this disease is like.
A slow rider on a weak horse. Digging in with
sharp spurs.
And so it goes. . . . . . . .
Your friend in Pa.
Olivija
Hi Friends,
Although Anne from Vermont is so right about
not all COPD is caused by Smoking,
It still is a large contributing factor for
the majority of us who find ourselves suffering today.
I do want to say that in my opinion there
is too much self-blame or guilt on our part and from others
on this fact. I for one am not willing
to take all the blame. And here is why. . . . . . . . .
Did you know when you smoked and thought you
were so kool, that the tobacco companies were
adding hundreds of toxic, deadly chemicalls
to the tobacco you smoked? (To further addict you!)
Do you blame them or yourself for that?
Do you blame them for knowing all this, and shredding
all the information on it, so no one
would find out untill several decades later? I blame a large
knowledgable corporation for more than, I
blame myself or any other addicted smoker for.
We all started on a whim as a kid. It
takes no time to form the addiction. Now you are still a kid, only
now one with an expensive habit who will spend
all their money on their addiction. Hell yes, I blame them
more than I do that dumb kid way back then.
By the time we have figure it all out and we want to quit,
we also find out it ain't that easy to quit
with all the stresses in our life. So most of us smoke on till the
crash and the diagnosis that ends our life
forever as we once knew it.
Ask me if I blame the lying, two-faced, money-grabbing,
depraved indifferenced to life, sub human
corporate exects! Go ahead ask me......................................
You can bet your last fast HEARTBEAT I do!!!!!
Just my opinion, While I can still give it
And so it goes. . . . . . .
Olivija
Friends of the memorial party
gather together to say farwell
Each in their own way, have come
Some of them pray, some of them cry
It's so very hard to tell a friend good-by
Then I see your sweet face.
who cannot hear me anymore
I now speak the many unspoken
words I never said enough to you
It's so very hard to tell a mate good-by
Now you are beyond hearing my words
knowing my thoughts, even before I
make them into words. There are no
words now. only feelings, and
It's so very hard to tell a lover good-by
I thought that I could no longer feel
The pangs of seperation
of this departure, of the loss of a mate,
a lover and a friend.
It's so very hard to tell you good-by
How do I tell you good-by?
When I know you live on
and it is I here in the shadows
prolonging my departure through
Heaven's other door because "It really is
so very hard to tell you good-by"
|
Ray called this afternoon and said Kelly got a septis infection,
pneumonia
and it was too much for her frail body. She passed this afternoon.
I will let you know of funeral arrangements after the family
gets back in town.
Kelly was an inspiration to all transplant recipients and
was dearly loved
by all . I will continue to use her courage as a strenght
in any trials I
face in the future.
We have all lost a friend but gained a source of love,courage
and
admiration in Kelly's life ..
I said a prayer for you today
And know God must have heard-
I felt the answer in my hear
Althought He spoke no word!
I didn't ask for wealth or fame
(I knew you wouldn't mind)-
I asked Him to sen treasures
Of a far more lasting kind!
I asked that He'd be near your
At the start of each new day
To grant you health and blessings
And friends to share your way!
I asked for happiness for you
In all things great and small-
But it was for His loving care
I prayed the most of all!
|
As many of you know, our dear friend Sandi
Niles "Munchkin" was finally on
call for a lung transplant. She was enrolled
in August for the "waiting
list" and the doctors told her it would probably
be 18-24 months before she
would be called.
This morning, Nov. 5th, at 7:00 am Munch
got the news that made her the
happiest of happy. "We have a lung for you!!!"
Whopieeeeeee, rejoice, and
she called me to see if I could drive her
and be with her there. We were
both in shock that she could be called so
soon. Yes she was nervous but the
joy of her finally being closer to her goal
of having a new lung, took away
all her fears and filled her with elation.
There was still chance once they
had her prepped and even in the operating
room, that the donor lung would
not be good or a perfect match for her, and
that she would be sent home
after having her hopes so high. Okay so can
you picture Munch, tapping those
teeny toes saying... "Zola... this is it,
It's really coming true... Heck I
was more nervous than Munch. Of course, Ms.
Calm one!!! But the trooper that
Munch always is kept saying... This is my
new birthday.. May a
note of the date. Nov. 5th is my 2nd birthday.
So much so that when they
took her down, I grabbed the calendar and
took page with the date to
surprise her down the road of her recovery.
A memento if you will.
So at 1:20 p.m. after many tests to see if
her body was healthy and strong,
she passed all tests and with her positive
attitude, off she went. I asked
her what she was going to dream about when
they put her out and she said
"Sailing with the birds, Zola.. I'm going
up with the birds and sailing
with the in the air just like I did before
hang gliding." I gave her a kiss,
told her I loved her and wished her well on
her way saying "Positive
thoughts Munch.. Positive thoughts... She
gave me the two thumbs up and was
all smiles as we walked down the hall together
till we had to split up.
Met up with Eddie, after he got off work,
and we started the waiting
process. 30 minutes into her procedure we
saw a very unusual circle of
either egrets, herons or swans, sailing in
an air foil just gliding away
right above her room. We laughed that Munch
was having her dream and sailing
up there with them... :) :)
Her surgery went as planned and was basically
very normal and they even
seemed to finish early before 5:00. We waiting
to see her after recovery
and back in her room. We waited and waited
for them to call us up. Almost 3
hours went by and the news that followed was
not what we had expected or
hoped to hear. Our little Munch didn't make
it. The new lung had some
complications and her poor little other lung
could not bare the weight on
it's own. What seemed to function properly
at the beginning, failed after
the surgery was over and she just didn't have
a strong enough left lung to
hold her own with.
I felt the need to write to you all tonight,
while I am still in shock and
partially sedated. I don't feel tomorrow will
be an easier day and I felt
you would all want to know. Please know she
loved and cared about each and
every one of you and was a good friend to
all. I am so grateful she had this
last Camp Zola with us where she was able
to enjoy the trip all 3 days. It
meant SO MUCH to her to be with a lot of "the
gang" once again like the old
days before her illness. Just the thought
of her having the hope of a
transplant, gave her new strength and courage
and it was wonderful to see
her a new strong attitude and mood .
I for one have lost a VERY dear friend and
close neighbor of over 9 years,
and right now can't imagine her not coming
home. Munchie dog knows
something is wrong so Zammie please get in
touch with me as soon as you can.
She needs some major TLC right now that I
think only you know how to
give her.
Please know that Munchie choose this decision
for herself today and it was
one of the happiest days of her short life.
Like everything else she did,
she took charge of her destiny and I think
she would willingly take the risk
all over again. I am so blessed to have had
her in my life if only for
the short time I did. I guess her daughter
Donna, who she lost just over 2
years ago last weekend, needed her more to
be with her now.
Thank you all and may God bless and take care
of our dear Munchkin. She was
one of my very best friends and a dear and
close neighbor.
I am writing on behalf of Sandi as I promised
her I would contact everyone
in her "buddy" list and let them know the
status of her surgery. I truly
wish I had better news to report.
Please pass this message to anyone you know
that Munchkin would have wanted
to know. I am going through her email address
book but I hope I do not miss
anyone.
Zola (zola@earthlink.net)
|
I am sorry to tell you my Sandy passed on to a better life surrounded
by friends and me.
He is in no pain now and not suffering. Thank you so much for all
your support, you are the
ones who helped us most through this difficult time.
I shall be back among you all soon to try to help others cope with
this terrible disease.
Love Jen
|
Subject: Re: [COPD] Dolly Halasz
Yes, Dolly was truly a lovely person. She was in my buddy
group and I will miss her so very much. I guess it's only in this
group that one can understand how I can cry so much over an internet friend
I never met in person. And we are in shock as she was just
diagnosed with pneumonia on Wednesday. Dorothy/AL
|
|
Secondwinders,
I have not written in quite sometime. I have been very busy
with 3, well 2
now, teenagers. The oldest just turned 20, reducing the number.
I have been lurking and reading here. Just not posting for
whatever reason.
However, it is with a heavy heart that I must bring you bad news.
Frankie
Heinz passed away this morning. He was a close friend and
he will be missed.
His last few months have been difficult. His mother
called me this morning
to tell me the news. It seems that Frankie woke and was not
real coherent.
An ambulance was called but he was pronounced dead at arrival at
the hospital.
Please take a moment or two and include Frankie and his family in
your
prayers.
Thanks
Allan Shuford Ochsner #63
The Only True Disability in Life Is A Bad Attitude!!!
^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^
Hello Everyone,
I would like to say some things on Frankie's behalf and in his memory.
As
most of you know, Frankie and I were engaged and lived together
3 years ago.
I was there with him and taking care of him until txp and during
txp. Though
we broke up after txp, we remained very good friends and continued
to talk
and visit with each other when I was in New Orleans. So, needless
to say, we
knew each other very well. And we did love each other very
much.
It is going to be hard to live in New Orleans without him there.
I was
looking forward to being able to see him more often. At least
I can go to
the cemetery and talk to him when I want to. I know he spiritually
will not
be there, but I do that with my grandpaw, and it makes me feel better.
One thing I am glad to know is that Frankie, had accomplished most
of his
dreams in the 3 years after txp. He was able to buy an old
antique fire
truck that even ran. He was so proud of that thing, he was
planning to
restore it and put it in the Mardi Gras parades. I would really
like to
complete that dream for him. I will have to talk to his mom
about it. He
had put the truck in storage. The only thing I would have
loved to see him
complete was to find someone to love him for who he was and be there
with him
in the end. Though I am perfectly happy in my current relationship,
I feel
responsible for that dream not being accomplished now.
Frankie told me that last time I talked to him, which was a few
weeks ago
that he had no idea what God's purpose for him was. He told
me, "Wendy, God
has brought me back from death's door 4 times in my life and I still
don't
know what He plans to do with me." I guess his time
was up and he had
completed his purpose on this earth. I believe his purpose
was to be an
inspiration to other txp patients and I told him that. He
did it very well.
I am not quite sure what exactly happened to take Frankie from us
so
suddenly, but his parents and doctors have requested an autopsy.
I am
attending the funeral and viewing on Friday. I will learn
more then and will
let you all know. His mom said Frankie would have wanted to know
what caused
his death and I concur with that. He used to say, "when I
die, they are
going to find all kinds of medical mysteries when they open up this
body."
He had had so many surgeries his chest and stomach looked like it
was a
jigsaw puzzle that had been put together. He was proud of
his "battle scars."
Well, now that I have cried my eyes out writing this to you all,
I am going
to cry some more and write Frankie. Dear Frankie,
Though you were taken from me so suddenly, I will always love you
and never
forget the times you and I shared, the good and the bad. I
will never forget
the things you and I did and experienced together that only we know
about.
As I always told you even after we broke up, I will always be proud
of you
for all that you have done in spite of everything. I will
miss you not being
there. I had looked so forward to sharing my news with you
of my job. I was
glad to know that I would not be alone in the "Big Easy" and that
I would
always have you there with me as my friend. Thank you for
picking me up at
the bus station and taking me to the hospital in June. Thank
you for sitting
up with me all the nights I was sick and in the hospital when we
were
together before your txp. I am so sorry I got mad at you for
the little
things. I love you very much and will miss you with all of my heart.
It will be
lonely in New Orleans without you. I promise to you, I will
find a way to
have that truck restored and have it in the next Mardi Gras parade
and it
will be in your memory.
Love Always,
Wendy