Select the person
you wish to communicate with by clicking on their e-mail address.
|
Debbie Burgin
twogreymom@yahoo.com
My
mother suffered a stroke
and aneurysm in July of
2006. When the doctor
inserted the central
line, he punctured her
lung. She was in ICU for
4 months and on the
hospital floor for a bit
over 1 month. We were
told she had ARDS. The
hole in her lung was
difficult to heal due to
the amount of air needed
to keep her lung
inflated. She had a
tracheotomy and the
doctors told us her
chance of survival was
slight at most.
Pneumonia set in and she
was immobile for almost
a year. Family and
friends prayed for her.
My dad prayed for her
lungs to be like new.
She has been in and out
of the hospital several
times with pneumonia and
has coded 3 times. Her
last hospital visit was
March of this year for 1
1/2 weeks. Today, she is
home, talking, beginning
to walk using her walker
and her oxygen is set on
2. Her lungs seem to be
stronger, but her
resistance to infections
is low. I have to wonder
if her lung had not been
punctured if she would
have struggled so long.
But, she is still with
us and still fighting to
overcome her many
obstacles after almost 2
years. Her experience is
much more than I've put
here, but the doctors
all say she is a
miracle.
posted
4/18/2008 |
|
Janet Collins
rcollins010@woh.rr.com
My
husband developed ARDS
on the fourth day after
hip surgery. He was
scheduled to go home the
next morning. He was
suddenly unable to
breathe and rang for
nurse. He doesn't
remember any more until
wakened four days later
in ICU. We were not
given much hope the
first night, he had
stopped breathing and
his eyes had rolled
back. He was lucky it
happened while he was
still at the hospital.
The doctor said we would
not have gotten him back
in time to save him. We
still don't have any
answers as to why this
happened. He is making a
good recovery and is now
in rehab at the hospital
where he has been for
the last 3 weeks. I
think this is going to
be a long recovery.
posted
3/22/2008 |
|
Eileen Hoffman
emh55@aol.com
My
daughter was diagnosed
with ARDS in July of
2005. She has been in
and out of hospitals
since then. Though she
has improved, I am
wondering if we has
reached the end of her
recovery. Krystle had
CP, seizures and mild
mental retardation all
prior to ARDS. I would
really love to connect
with others who have
been caring for someone
recovering. I have nurse
helping, but no one
really knows how much
Krys will get back and
she is very depressed
because of all the loss
of strength. She is now
in a wheelchair, on
oxygen and tube fed,
none of which she needed
before. Please feel free
to contact me with
stories, suggestions,
books or even doctors
that you have found
helpful. I am losing
hope for her recovery!
posted
3/13/2008 |
|
Julie
juliebutt1@yahoo.com
I'm
writing this for my
daughter, in hope that
maybe she will take
interest, and to know
she is not alone. She
has been so traumatized
by this whole ordeal. She
has had really bad
asthma, and she was 7
months pregnant when she
had an attack. They had
to intubate her, and she
was in a coma for 19
days when her left lung
collapsed. They had to
take the baby via
c-section. She weighed 3
1/2 pounds and is
beautiful and so smart.
Thank you Jesus. But
Rachel on the other hand
is still haunted by her
dreams. She is tired
most of the time. and is
afraid of dying, and she
has panic attacks. It
has been one year and
two months and she still
hasn't had any
counseling or even
anybody to talk to about
any of this. She is
afraid to talk to me; I
think she thinks it
would scare me or
something. There is so
much more to our story,
I think I have to write
a book. If there are any
other women that were
pregnant and went
through the same thing,
please write us back.
Thank you, Julie
posted
1/23/2008 |
|
Bunny Prather
flughoffdia@hotmail.com
Bill
was hospitalized in
September 2006 for knee
replacement surgery.
Shortly after the
surgery, he developed
pneumonia. He was
transferred to critical
care, intubated, cored,
had bleeding from the
lungs and went into
system failure. After
fifteen days, he was
transferred to recovery
and placed on 10 liters
of oxygen. After 2
months, he was
transferred to
rehabilitation and
lowered to 3-5 liters of
oxygen per day. He was
released from
rehabilitation therapy
on December 21, 2006 and
went home with a
diagnosis of COPD. He
was diagnosed with ARDS
three months later. He
began therapy and was
doing well until August
31st, when he
developed a fast moving
pneumonia. He cored and
was again intubated and
spent 2 weeks in a
medical coma. After
being in intensive care
for 2 months, he
returned to a
rehabilitation facility.
He is on 3 liters of
oxygen at rest and 10
liters of oxygen when
standing and walking. He
has always loved to sing
and started singing
while in rehabilitation.
His lungs have improved
slightly and he is now
able to get around a
little better. He will
always be on medication
and oxygen. If anyone
out there has any
suggestions about
improving his situation,
I would like to hear
from you. He has
"recovered" from death
twice and I am grateful
to all the doctors and
therapists who have
helped this far. But, I
feel there is more to be
done to help the medical
profession to diagnose
this illness faster and
more comprehensively. As
his spouse, I have
watched everything that
was medically done to
save Bill. I spent days
and nights at his side
and have learned as much
as I can about this
illness, mostly from
computer studies and
computer research. The
only "experts" on this
illness seem to be the
persons who have
survived and have had to
learn to live with the
illness. I need all the
help and suggestions I
can get from survivors
to help my spouse. Thank
you.
posted
1/21/2008 |
|
Betsy
betsmac@charter.net
My 26
year-old daughter Ashley
is recovering from ARDS.
I would like suggestions
for helping her cope.
Please send me any
suggestions for hobbies
or activities while bed
bound, or hints for
strengthening and
exercises to lift her
spirits and motivate
healing. Thanks.
posted
7/21/2007 |
|
Charlotte Straub
charlottestraub@comcast.net
My
nineteen year-old
daughter was admitted
into the hospital with
aspiration induced
pneumonia that resulted
in ARDS on January 23,
2007. She was in the ICU
and on a ventilator for
two months before being
transferred to a
rehabilitation hospital
for an additional month
of vent weaning and
physical therapy. Our
time in the ICU at
Memorial Hospital was
extremely rocky for
quite a long time. She
was too frail to
transfer to Stanford
Medical Center when we
were at wits end. I have
journaled the whole
experience and I am
available to share with
anyone who has/is also
living this experience.
My daughter is doing
well. She has been home
with us for three weeks
now. She has oxygen at
home for exercising and
sleep, but we are
confident that this will
be a temporary measure,
perhaps three months
while the lungs are
reconditioning. I know
that everyone's process
and experience (both as
loved ones and as
survivors) is different
but if sharing mine will
ease just one other
persons experience,
please, let us talk. If
you are not ready to
talk, may I please
recommend that you be
strong as your loved
ones advocate, don't be
afraid to ask questions,
and have faith. Faith .
. . being sure of what
you hope for and certain
of what you do not see.
posted
5/9/2007 |
|
Sue
srsd123@bellsouth.net
I
have had contact with a
mother whose son is an
ARDS survivor and is a
college student. We are
trying to located anyone
in their 20`s or anyone
in college that has had
ARDS. I am a 49 year-old
female that is an ARDS
survivor. I had ARDS
three years ago. I would
like to find someone
close to this young
man's age or someone in
college that he can get
in contact with to help
him readjust to life.
His mother is a
principal at a Christian
school in Tennessee.
posted
5/8/2007 |
|
Gloria
Angel7167@aol.com
On
January 31st, my 14
year-old son Justin
suffered a seizure at
home and three more in
the hospital. While he
was getting a CT scan he
aspirated and two days
later was diagnosed with
severe ARDS. Both lungs
were completely whited
out and as the doctors
put it "like cement".
After a week in one
hospital, the doctors
told us he may not
survive, and shipped him
to Boston Children's for
possible ECMO. He never
ended up needing ECMO,
but was put on a Hi-Fi
vent for two weeks,
which seemed to do the
trick. We returned to
Worcester on March 6th,
and he was extubated on
March 8th. He is doing
well respiratory wise;
however, because of the
length of time and
amount of medications he
was on, he has yet to
fully awaken. His cough
is still weak, and he
gets very wheezy. But he
is doing well. I am very
hopeful that he will be
a survivor. He has a
long way to go, but he
is a hero, and a very
brave little boy, as is
his 10 year-old brother
Chris.
posted
3/11/2007 |
|
John Schmidt
johnnyapple@mac.com
My
Mom developed ARDS on
March 4, 2006 following
knee replacement
surgery, which may have
caused sepsis and
resulted in ARDS. She
was on a ventilator for
63 days and spent most
of that time in a drug
induced coma. We had a
lot of close calls
during those two months.
She went home on
Memorial Day, and today
you'd have a hard time
believing she was ever
sick. The St. Cloud
hospital staff was
phenomenal!!! God and
family, and of course a
strong willed woman, got
us here today. Click on
the link below if you
would like to read a
nice story about her in
the local paper.
"Beating the Breathing
Odds"
Please contact me if you
need a friend to talk to
about your ARDS
situation.
posted
2/8/2007 |
|
Pat
mlpj@iowatelecom.net
My
husband had an acute
case of ARDS six years
ago last August. From
the information I have,
I believe many survivors
die within the first
couple of years due to
other lungs problems
caused because of the
ARDS. We feel very
fortunate that he is
going on seven years of
survival. He usually has
pneumonia a couple times
a year. Last year he
didn't get it once. Now
he is in the hospital
with low oxygen
saturation, so he is on
oxygen. The doctor says
he will need to be on
oxygen all of the time
to keep his oxygen level
up. I am wondering if
this is also a result of
the ARDS. He does have a
lot of scarring in his
lungs. He did survive
but his life is not the
same. Due to the lack of
oxygen, he has some
brain damage. He was on
a respirator for six
weeks and continued to
have his trach in for
another month with
oxygen. I wonder if
there are any other ARDS
survivors who have had a
long life after ARDS.
posted
1/28/2007 |
|
Shandra
shammonds62@yahoo.com
Four
years ago, my husband
had a massive heart
attack. He had 3
bypasses. two front
arteries - one 100%
blocked, one 99%, one on
back of heart 50%
blocked. Five hours
after open heart
surgery, my husband
developed ARDS. He
didn't open his eyes
until 2 weeks later. The
doctors said that most
of the time ARDS shows
up days after surgery,
and they had never seen
a case 5 hours after
surgery. He did recover
some, but the damage is
done. He is not the same
person. He finds it hard
to breathe, and by noon
he has to lay down to
recuperate. He never
feels good. The doctors
say that he only has 40%
lung function from the
result of ARDS.
posted
12/28/2006 |
|
Theresa Hufford
takfroggy@atlanticbb.net
My 4
year-old daughter was
admitted to our city
hospital on Christmas
Eve 2005 w/ sats of 85%
and her CXR was almost
white on both sides. She
was admitted, but then
transferred to
Children's in Pittsburgh
on Christmas day. She
was put on a ventilator
for 12 days with high
settings, 3
antibiotics,2 diuretics,
and 2doses of lung
surfactant (a drug
usually given to
premature infants to
help the flexibility of
their lungs), & numerous
other meds to help her
fight. The doctors told
us to expect to be there
at least 3 weeks and
that we got her there
just in time. Her pco2
was 290 and near
respiratory failure. She
only spent a total of 18
days in the hosp the
first time, but has
since been back in the
hospital 3 times since
then. One time requiring
intubation for 2.5 days
and cpap for 5 days. She
was a perfectly healthy
child up to this point,
but now must remain on
antibiotics & low dose
steroids to prevent
pneumonia. At one point
she required 1-3 lpm of
o2 at night to sleep &
during the day or she
would de-sat. She
receives supplements
,neb tx, & chest PT
twice a day. She now has
bronchiectasis to both
sides of her lungs and
scarring making it hard
for her to clear her own
airways. It's really
hard for us to deal with
since we have to worry
about every virus that
comes around.
posted
12/21/2006 |
|
Frank Gonzales
rfmax@bacavalley.com
My
name is Frank Gonzales,
and my wife Rita was
diagnosed with ARDS on
November 18, 2006 after
a right leg amputation.
After her surgery, she
was rushed to the ICU
unit and she has been
there for the past two
weeks. The doctors told
me that she had a 50%
chance of survival. She
had tubes, blood
transfusions and much
more. While she was
still on a ventilator,
she couldn't talk or
move. I think she didn't
know where she was or
what was going on. I
have a lot of faith that
she is going to live a
full life.
posted
12/1/2006 |
|
Patsy
leasman@sbcglobal.net
In
2004, my daughter Jody
had ARDS, and now has
had many problems as
well as with her heart.
But can we say these are
all from ARDS??????
posted
11/27/2006 |
|
Wendy
wendyhjames@yahoo.com
On
June 9, 2006 my Dad was
taken to the hospital
with severe stomach
pain. He had a
perforated ulcer and had
to have emergency
surgery. He made it
through the surgery and
was immediately placed
on a ventilator and was
sedated and given a
paralytic drug (he was
kept paralyzed for two
weeks). Within a couple
of days, we were told he
had ARDS due to severe
sepsis. He had to be on
a ventilator for over 4
weeks and also had to
have dialysis for kidney
failure within about 10
days of his
hospitalization. He
spent 7 weeks in ICU and
another 4 weeks in a
regular room. He went
home for 10 days on
August 28th and then
developed another
infection and had to be
hospitalized for another
2 weeks (he doesn't have
a spleen due to an
injury
12 years ago and is very
susceptible to infection
to his body being so
weakened). He is home
now and is recovering
well. The doctor is
still concerned about
his stomach healing
properly and the only
other major side effect
is he is suffering from
severe short term memory
loss. But my Dad is
lucky to be alive and to
have survived ARDS.
There were several times
when he was very close
to death, including a
day when they decided to
put him on an
oscillator. But this was
a day when they had him
on 100% O2 and had to do
something. He hovered at
70 to 80% for a lot of
days. It has been a long
process and sometimes I
wonder how we made it
through it, but we are
just thankful that he
had the will to live and
God protected him. I am
still worried about his
body being so weak and
him being asplenic but
hopefully with time he
will grow stronger.
posted
9/23/2006 |
|
Jennifer
jmince@dpvco.com
My
Dad had knee replacement
surgery on June 12. Two
days later, he had blood
clots in his lungs.
Before we knew it, he
was diagnosed with ARDS.
It wasn't long before he
was placed on the
ventilator. After many
life threatening events,
he was finally able to
come off the ventilator
and is now recovering in
an acute care facility.
He still has a long way
to go with rehab;
however, we are grateful
that he is still with us
today. God still has big
plans for my Dad.
posted
8/24/2006 |
|
Connie
tcbnca@yahoo.com
My
sister was just
diagnosed with ARDS. I
am trying to understand
how she is feeling, as
well as deal with my own
emotions while helping
her and her two
children, a grandfather
newly diagnosed with
lung cancer and dealing
with my own thyroid
cancer. Any suggestions
would be helpful.
posted
8/20/2006 |
|
Melinda Taylor
melmarknic@yahoo.com
My
daughter, Nicole, then
age 4, was admitted on a
Friday with respiratory
distress in May 2003.
She was in our local
children's hospital on a
regular floor, until
Monday early morning
when she was transferred
to the PICU. We were
told she had pneumonia
but then Wednesday
morning came and during
rounds, the PICU doctor
said this is not
pneumonia, Nicole has
ARDS. Not knowing what
this was the writing was
on the wall and I just
knew Nicole was not
going to live. Someone
from the floors whom
came regularly to see
Nicole, a true way back,
veteran of doctor's,
made the sign of the
cross and put his hand
on my shoulder and said
"all we can do is pray".
I cried all day knowing
she was not coming home
this time. She had
already had a rough road
for the 4 year's with
her health and a rare
syndrome. But behold!!!!
Many, many prayer's
being said all over,
Thursday morning there
was a little sign of
improvement, but she was
not out of the woods.
Friday morning was very
positive, and she was
turning for the better
but still a very sick
little girl. Nicole was
in the hospital for
approximately 2 1/2
months, and most of that
time was spent on the
vent and sedated. She
was sent home for 2
nights where she could
hardly breathe, she went
back to the ER, and
admitted back She was on
the vent, and a trach
was placed and she also
developed pulmonary
hypertension. I believe
it was Nicole's left
lung that saved her life
as the left lung had
just a little capacity
left for oxygen to get
through before the
turning point began on
Thursday morning. It was
much later when various
professionals commented
"here's the little girl
who almost did not make
it" and "it was said she
was not going to
survive". So a real
whirlwind of ups and
downs, baby steps
forward and huge steps
backwards, but she is
here. Many doctors,
nurses, professionals
and us as families know
Nicole is truly a
miracle over and over
again!!!!! WE praise
GOD, and the awesome
caring doctors and
nurses at our children's
hospital, where we
nearly lived there as a
home away from home for
nearly 3 years.
posted
8/7/2006 |
|
Jackie
dsprint@meltel.net
I
can't believe it to this
day when I look at my
mom, she is here. Her
chances of survival on
March 4th, 2006 were
slim. Today, with much
doubt hanging overhead
for 4 months, she is
practically back to
total normal. She even
ditched the portable
oxygen. She has been
called a miracle by her
doctors, family and
peers. No one thought
she would pull through
and every be "normal"
again. She did and she
is. We truly believe
that God had a huge part
in her recovery,
especially the speed of
it. She is back to work
just like she was never
gone, back to doing just
about everything she did
before. She had a knee
replacement before
developing ARDS, and
thankfully walks better
than before. Just know
there is hope.
posted
7/6/2006 |
|
Tammy Adams
eadams66@netzeo.com
I
would like to offer
encouragement and
comfort to all those who
are either in an ARDS
crisis or have lost a
loved one to ARDS. My
mother had triple bypass
surgery in 1998. About 4
days after her surgery
she could not breathe
and was placed on a
ventilator. We were told
she had ARDS. She was
ventilated for 3 weeks
and I started my
research into ARDS. I
searched for all the
info I could get my
hands on. In July 2001
she was hospitalized for
pneumonia and I was on
guard as I knew that
pneumonia could lead to
ARDS.
She went downhill very
quickly was put on a
ventilator. After being
on a ventilator for 3
weeks she was given a
tracheotomy and the
doctor asked us which
hospital we would like
her sent to. During the
first 3 weeks we could
still communicate with
her and they were still
able to turn down the
sedation. We had her
airlifted to Johns
Hopkins where she stayed
on a ventilator for a
total of 4 months. She
was very sick and
completely sedated at
that time. She was able
to get well and start
rehab but then suffered
a stroke. She was
completely paralyzed on
her left side. She left
Johns Hopkins on the day
before Thanksgiving in
2001 in a wheelchair
unable to walk and care
for herself. My mother
went to rehab daily and
faithfully for 3 years
and she is now able to
walk and she lives on
her own. She has not
been without a few
setbacks including
another minor heart
attack and COPD. Every
now and then she is
hospitalized for her
breathing problems. My
mother smoked 2 packs a
day for 30 years. She no
longer smokes but will
have health problems for
the rest of her life
because of it. I believe
that my mother is a true
miracle. I remember
asking God to do his
will with my mother as
she already had ARDS
once and was not likely
to survive it the second
time. As I read your
posts, I ask why do some
survive and others
don't? It can happen;
people do survive this,
some even twice. It
takes a toll on those of
us who feel helpless or
don't have the answers
from the medical staff
we need. I remember
asking for the doctors 2
and 3 times during a
shift. I wasn't going to
drive the 2 hours home
from Baltimore without
the answers I needed.
Many of us have never
even heard of ARDS until
our loved one has it. I
pray that all of you
will find the answers
and hope that you need.
This website is
wonderful and I have
spent a lot of time here
in the past 8 years..
But as I read the posts
I can say "Yes, it was a
roller coaster and yes,
I felt that way too."
Please contact me if I
can be of any further
help.
posted
7/4/2006 |
|
Stephanie
sjhnurse1@yahoo.com
My
mom has a rare form of
angiosarcoma in her left
chest wall and had
surgery for the second
time in 2 years on
Wednesday March 1, 2006
at MD Anderson in
Houston, TX. The surgery
went well, but by Friday
she was having trouble
breathing. By Saturday,
she was placed in the
ICU and by Tuesday she
had thrown blood clots,
some of which went to
her lungs causing a
pulmonary embolism and
she coded. She was
placed on a ventilator
for a couple of days.
The doctors took her off
the vent and she
developed a hematoma in
her back. She had to be
sedated again to have
the hematoma removed and
had trouble coming off
the vent again.
Basically she was on and
off the vent several
times and then the
doctors finally
diagnosed her with
having ARDS. She
developed MRSA, C-Diff,
ended up with a trach
and was in the ICU in
Houston for 1 1/2 months
and then was medflighted
back to Ohio where she
lives and was in the ICU
there for another 2
months. At one point her
blood pressure was all
over the board and the
doctors thought a couple
of times she wouldn't
make it through the
night. They said if she
did she only had about a
10%-25% chance of making
it. But because of the
care of the doctors,
nurses and especially
God she made it through.
She was finally released
from the hospital on
June 23, 2006 and is
home recovering. She had
developed ICU neuropathy
(femoral neuropathy) in
her left leg, is weak
and has to walk with a
walker. My family and I
have noticed a slight
change in her cognition
and she is still on
oxygen and we are
dealing with C-Diff
again. This has
definitely been a
rollercoaster ride for
all of us over the past
4 months. I'm a nurse,
as is my mom, so
everyone looked to me
for answers and
explanations of what was
going on. I didn't
always have an answer
and I couldn't ask her
to explain. I got to the
point where I didn't
want to talk to anyone
because I didn't want to
answer any questions.
There were times too
when I knew things were
not going well and I
didn't want to alarm my
family but it was hard
to stay composed. Its
definitely not over for
her...she still has a
long road ahead of her.
The best thing that has
come out of all this is
the doctors in Houston
said there is absolutely
no trace of her cancer.
posted
6/26/2006 |
|
Diana Rodriguez
sardonic14@yahoo.com
Scott
is my fiancée and an
ARDS survivor. He is
currently sick with
pneumonia and we were
told the chances for
recurrence are high.
posted
6/1/2006 |
|
Shirley Weeks
ssweeks6@sbcglobal.net
My
daughter Denise was in
the ICU for the month of
November, 2004 with
ARDS, then back in the
hospital in February and
March for 3 more weeks.
She had done really well
until last week; now she
was put back in the ICU
on April 9, 2006. She
has survived again
through the will of God.
The trauma to her mind
and body are becoming
very hard on her because
of the pure oxygen for
so many days. The scary
part is we know it is
going to happen again
and it is becoming
harder and harder to
watch her suffer so
much. Thank you very
much for your prayers.
posted
4/27/2006 |
|
Wendy Washburn
kwashburn@comcast.net
My mom Peggy, entered
the hospital on March 3
for a probable
thoracotamy for a large
lesion on her left lower
lung. She had smoked a
pack a day up until a
couple of weeks prior to
the surgery, so we knew
it probably wouldn't be
good news. The surgery
went as well as could be
expected, and the
cancerous lesion and
left lower lobe were
removed. A small
metastasis was noted on
the bronchus in the
hilar area, and Mom was
sent into SICU to
recover. She did have a
large air leak in her
chest tube, but did well
and was sent out to the
floor within a couple of
days. After only half a
day on the ward, she was
back in SICU with ARDS.
I am an RN, and going
thru this with her (also
an RN) has been a life
changing thing for me.
She is 75 and really has
been a fighter. I have
been keeping a log, but
mainly of the medical
aspects of her care so I
know what's going on.
I'm so glad there is
support out there. We
have no idea what the
future (or even
tomorrow!) will bring;
she's still in ICU, but
now her chest x-ray is
starting to clear up.
She was already weak;
now what?
posted
3/19/2006 |
|
Tina West
bigheart31@hotmail.com
On May 17th, 2005 my
husband fell 28 feet
onto his head. He had
severe brain trauma, 20
fractures in his back, 7
broken ribs, a punctured
lung, a broken
collarbone and a
shattered shoulder
joint. He was in a coma
for over 6 weeks. One
week after being in ICU,
they told us he had
ARDS, something I had
never heard of. They
didn't give us much
hope, in fact no hope,
because his lungs were
in terrible shape. They
said he was the worst
case they had ever seen.
He was proned (turned)
onto his stomach every
12 hours for almost 5
weeks. Today he is a
miracle!!!!!
posted
2/21/2006 |
|
Cherie
cheriewallis@yahoo.com
My mother (55) went into
the hospital several
months ago. Her whole
body shut down and she
had lost a lot of
oxygen. The doctors
believe it was an
infection somewhere in
her body that caused
this. She was in the ICU
for over two weeks and
it was touch and go.
When she came home, I
(24) was the only one to
care for her. I had to
leave both my work
school. I helped her
through a lot of
emotional turmoil and
tried to give her all
the support she needed.
Three months later, I
find myself becoming
easily angered or
agitated around her. I
have now returned both
to school and my job,
but it does not help the
friction. I love her
with all my heart and I
don't know why I have
become so closed to her
needs. She is still very
weepy and anxious, yet I
can't seem to help her
anymore. I feel like an
awful person. I know she
still needs to talk to
someone (my father and
sister are not very
understanding) and I
still become so
frustrated. I don't know
what to do. I know this
is pulling us apart, but
I still find myself
struggling with being
her sole companion.
posted
1/27/2006 |
|
Lee Shults
hissyfit99@aol.com
My husband, Ronny Shults,
went into the hospital
on May 13, 2002, with a
heart attack. He
underwent a bypass and
was fine for the first
24 hours. When I saw him
in the ICU, he was
sitting up drinking a
Dr. Pepper and teasing
the nurses who were
getting ready to move
him to a room. 12 hours
later he was on a
ventilator and we
learned he had ARDS. 5
months (4 in a coma), 8
chest tubes, 1 lung
biopsy, 2 blood
transfusions, 2
different trachs, and a
difibulator/pacemaker
later, I brought him
home in a wheelchair and
on oxygen. We had used
up a million dollar
insurance policy after
only 4 months and had no
resources left for
rehab. We moved in with
his sister and her
husband leaving our home
of 15 years and 2 pets
alone. Since I was left
for our sole support, it
was such a blessing to
have his sister to care
for him during the day
so I could still work. I
know there are others
like me out
there....please
write...I know what you
are going through! 4
years later Ronny is off
of oxygen and walks on
his own. He is not the
same man, but he is here
with me and that is the
most important thing. We
will celebrate our 36th
wedding anniversary in
May, but our lives will
never be the same. It
truly is "for better or
for worse, through
sickness and health".
There is hope and life
after ARDS for all of
us.....God Bless you
all.
posted
1/7/2006 |
|
Jamie Adair
twoof@hotmail.com
My mother has had ARDS
twice. The first time
was in 1996 following a
knee replacement. She
suffered ARDS a second
time in November 2004
following the
replacement of her other
knee. The second
occurrence was far more
severe than the first
and she nearly didn't
make it. Thankfully, she
did survive. However,
it's been 3 months
post-surgery and she is
still extremely weak. I
wanted to join this
forum to see how others
are doing 1+ years
post-ARDS.
posted
12/21/2005 |
|
Jess
jjcsvp@aol.com
Hello, I am the wife of
an ARDS survivor. My
husband was hospitalized
from June 4th until the
end of August. He is
home now after being in
a coma with a
tracheotomy, a feeding
tube and 2 chest tubes
and I am so proud of
him. My question is
this: does anyone have
any advice for me on how
to deal with all the
emotional issues running
rampant in our lives
over this? I love my
husband so much, but
this illness left a huge
hole in our lives when
it came barreling
through. I am trying to
pick up the pieces...any
advice Thanks.
posted
12/14/2005 |
|
Valerie Merchant
valeriem@townisp.com
I would like to know if
anyone has a family
member with ARDS that is
having stomach problems.
My mother has had a Cat
Scan, ultrasound, sample
tests, etc. but none of
these tests show any
problem. She cannot even
digest the tube
feedings. Does anyone
have a suggestion as to
what may be causing
this? Her lungs are
actually clearing up,
but this problem
remains.
posted
12/5/2005 |
|
Stephanie Ashlock
gusafaync@aol.com
My mother Gail Bryan was
bit by a tick on a
church youth camp and
was infected by Rocky
Mountain Spotted fever.
She was in the hospital
a week and a half before
ARDS set in. She
developed pneumonia and
sepsis. The doctors did
not give her much hope.
She was placed on a
mask, the vent, and then
an oscillator. Thank God
she survived. Her body
was shutting down, but
the good Lord stepped
in. Mom was on the
oscillator for 4 days
and the vent for 5
weeks, for a total
hospital stay of 2
months. She now is
receiving outpatient
physical therapy and on
2 liters of oxygen. It
looks like her lungs
were damaged about 50%.
It is very important for
family members and loved
ones to stay positive
around the patient.
Things may look bad but
there is always hope.
Just thinking back to
August 1, 2005 when her
condition deteriorated
makes me cry. Thank God
she is now recovering at
home with her family.
posted
11/9/2005 |
|
Arul Kandhan
arulkandhan@gmail.com
Firstly, let me add a
few inputs that have not
been requisitioned in
the above form. The
patient in question is
my mother of 58 years.
During the course of
being on a ventilator,
she had contracted HAP
and she had spent about
58 days on the vent
before she was extubated.
On regaining
consciousness, we
observed weakness in her
complete left side. A
quick CT and MRI
angiograph revealed
following:- (a) An
infarct on the right
parietal and left
occipital lobes; (b)
Stenosis of the distal
M1 segment in the right
cerebral artery. At this
juncture, I have been
told that the condition
is called hemiplagia and
there is no active
medication involved
except those that would
reduce risk of a stroke
and exhaustive
physiotherapy. I would
most grateful if you
could kindly advice us
if in your experience
such cases have come and
if any remedies exist.
Mother is 58 years old,
has been active
throughout her life
(walking about 6-7
kilometers a day), has
diabetic tendency and is
an extremely cooperative
and positive lady.
posted
10/17/2005 |
|
Julie Wilds
wilds4@cox.net
My
4.5 year-old daughter
had "a virus" per the ER
doctors on Tuesday. I
was told to keep her
fever down and keep her
hydrated. On Friday, she
was admitted w/ sats in
80's and she was
intubated. She was flown
on Sunday to Children's
Hospital of Philadelphia
(350 miles). They put
her on an oscillator and
was one blood gas away
from ECMO by day 7.
Miraculously, her bg
went up. She had a total
of 5 chest tubes, spent
28 days intubated (7
days while awake, wow!)
5.5 weeks in PICU, and 4
weeks of inpatient
rehab. She is now home
without oxygen, and on a
feeding tube with
horrible feeding issues.
We used hypnotherapy to
reduce vomiting and
feeding issues. 7 months
after extubation, she
has only chest tube
scars and some stamina
issues. Prayers from
around the world saved
her, as well as her
doctor Daddy who rounded
every day with the docs.
He became her personal
doctor, and knew every
lab value and every
change. The doctors and
staff at CHOP call her
"their Spring Miracle".
She never should have
made it, and she did. I
(mom) had serious PTSD
about 3 months after she
got home. I managed to
keep my cool during
everything, but after I
was a basket case. I
didn't know about this
site during this
ordeal...it should be
given to all ICUs and
PICU's to inform.
posted
10/4/2005 |
|
Tara
taramortimer@hotmail.com
My
mother experienced a
whirlwind of issues
while in the hospital.
Just as one thing was
cured, something no one
ever even considered
came knocking. This all
occurred in the
fall/winter of 2000. I
am able to relate not
only to the medical
issues of ARDS, but also
to the emotional
struggles I went through
while my mother was
recovering (the divorce
of my parents, the
amputation of my mothers
fingers, her struggle
with smoking, bone
infections). I was a
high school student and
athlete at the time and
can relate and give
advice to others about
how I managed throughout
her illness. Please
email me for support,
information, or just to
chat.
posted
8/4/2005 |
|
Maggie Keogh
mag_keogh@yahoo.com
I am
not alone. My husband
had a lung removed
(cancer) and after
surgery went into ARDS.
It's been 3 months now,
and they are weaning him
off the ventilator. They
did the trach collar for
6 days, but they had a
set back. His worst
enemy now it seems is
panic attacks. He is on
an antidepressant and
anti-anxiety and Adivan
as needed, but he still
has panic attacks. Is
there some other drug
that works better for
these respiratory
ailments and panic? I
would love to know or be
referred to someplace
that might know.
Thank you a hundred
times,
Maggie Keogh
posted
7/28/2005 |
|
Tina West
craig.west@sympatico.ca
On
May 17, 2005 my husband
had a terrible accident.
He was working on a
commercial garage door
when something that no
one has been able to
determine happened,
causing him to fly 24
feet from a ladder, to
be found 8-12 feet from
the base. His injuries
consisted of severe
brain injury, 7 broken
ribs, punctured lung,
broken clavicle and
shoulder blade and 20
fractures in his back.
One week after being in
ICU he got ARDS,
something I've never
heard of before, and he
also had pneumonia. My
husband was on death's
door for such a long
time. They spent weeks
proning him to get his
lungs to work, and
finally 9 weeks later he
is now out of ICU and in
his own room. The ICU
staff is calling him
their biggest miracle in
over 15 years. I've
never been so scared in
all my life. He still
has so many obstacles
against him, but he
survived ARDS...that in
itself is a HARD thing
to do!
posted
7/20/2005 |
|
Sarah Emery
footiemak@aol.com
Surgeons said Mark's
bypass operation went
well. They put Mark on
vent because of
agitation, etc. They did
not continue to give him
his Xanax but according
to a consulting
psychiatrist called in
by me after much begging
and pleading with
surgeons, Mark was mega
dosed with Ativan which
had a paradoxical
effect. Mark had a 45%
ejection fraction before
bypass and now has 15%
This is a new cardio
unit where the bypass
was done and had no
psychiatrist on staff.
Could this agitation
have damaged the graft?
I believe if that doctor
had not been called in,
Mark would be dead. He
had him off the vent in
2 days after changing
medications. He was
walking around the CCU
fine with no oxygen.
Then he was sent to
rehab unit where there
was no rehab, but more
inappropriate meds given
at the wrong time of day
and pulmonary edema
attributed to panic
attacks. He was always
in a wheelchair or
sleeping. I tried to see
cardio surgeons and they
never responded to my
messages and left him to
the rehab unit doctor
who released him with no
oxygen to climb two
flights of stairs. That
night he was in another
ER with pulmonary edema
and now has congestive
heart failure. He was
sent back to the
bypass hospital and I
arranged for a transfer
to Mass General
Hospital, which the
cardiologist blocked. He
wouldn't arrange a
doctor to doctor
transfer. My insurance
had okayed this
transfer! Have there
been any studies done on
sudden withdrawal and
overmedication of
anti-anxiety drugs
regarding damage to
graft and heart? Where
could I get any info on
this?
Thanks,
Sarah E.
posted
6/9/2005 |
|
Tracy
tlpinto@yahoo.com
My
father is 68 years old.
He was a life-long
smoker and quit two
years ago. He had been
on oxygen for the last 6
months due to his lung
disease. He was admitted
to the hospital on May
1, 2005 for shortness of
breath. He "crashed"
while getting a CAT scan
of his chest to test for
a pulmonary embolism.
The doctors were unable
to ventilate him above
50mm of oxygen for about
6 hours. (Don't ask me
why). They are now
saying that my father is
"brain-dead" and cannot
be weaned from the
ventilator. When I talk
to him, his eyes
flutter, and I swear
that he hears me, but
the doctors all believe
that I am incorrect.
They have him HEAVILY
seated so it's hard for
me to even believe that
it's not the drugs that
are making him so
non-responsive. He has
an open-eyed, fixated
look all day long. They
are now classifying him
as an end-stage,
vegetable with no chance
of survival off the
vent. My father walked
into that hospital with
pneumonia feeling a
little ill. It is short
of impossible for me to
believe that he was that
sick. And now, to know
that he went from a
vibrant, intelligent man
to this shell of a
person is absolutely
devastating. Does anyone
out there feel like the
doctors are/were
pressuring them to end
ventilation? Our doctors
act like they are upset
that we want them to
aggressively continue to
fight for our dad. Any
communication with me
would be greatly
appreciated.
posted
6/8/2005 |
|
Dan Grim
grims@yahoo.com
Unbelievably, my father
Vinal Grim is also John
Grim's father. As noted,
John was one of the
original founders of
this support network.
My father developed ARDS
after colon surgery.
posted
3/6/2005 |
|
Cammie Benson
camiam777@aol.com
My
husband Lynn had a pain
in his side and felt
like he couldn't get
enough oxygen. I thought
he just had pleurisy. He
spent a whole day in the
hospital and they found
nothing. 3 days later he
was in the ICU. Every
test came back negative.
He spent 2 weeks on a
respirator. The doctor
said we should call a
priest to have him
blessed. He's a very
strong and tough guy and
I think that's why he
survived. He's now home
but very tired. He
seemed to be doing so
well yesterday, today he
hasn't gotten out of
bed. He's normally on
the go all the time.
Only time will tell how
he will get through
this.
posted
2/6/2005 |
|
Melissa
j.quintanilla@comcast.net
A
good friend, Megan, went
into the hospital on
12/13/04 to deliver her
third child, a healthy
and beautiful baby boy.
Megan was very weak and
sick upon entering the
hospital and while in
labor had vomited. In
the days to follow,
Megan's health became
worse. It was believed
that when she had
vomited, she had
aspirated into her lungs
and developed pneumonia.
The family, wanting the
best care for her, moved
her to the Fairview-
University Medical
Center in Minneapolis,
MN on 12/18/04. It was
there that she was
diagnosed with ARDS.
Megan has been on a
ventilator now for one
week. She is 27 years
old and is very strong.
We continue to pray that
she will recover from
this very quickly. Megan
and her husband Wes were
unable to decide on a
name for the baby before
Megan went into the ICU.
Wes says "We had this
baby together and we
will name this baby
together." So "Baby T"
will wait to be named
until Megan is well
again. I would like to
talk to anyone who
has/had a loved one that
is in crises with ARDS.
I believe that it will
help me stay strong for
my "family" if I can
continue to talk about
this with someone who is
going or has gone
through the same thing.
Also, everyone that
reads this please say a
little prayer for Megan.
For the power of prayer
can move mountains!!!
posted
12/25/2004 |
|
Deb
rphdmr@yahoo.com
My
husband Kevin had
bariatric surgery on
6/28/04. 7 weeks
later he developed an
internal hernia.
He went to the ER and
had a gastrograffin
swallow. He had the
hernia repaired, and 2
hours after surgery, he
desaturated into the
70's. He was re-intubated,
with one infiltrate
showing on the x-ray. 24
hours later, he was
diagnosed with ARDS.
His paO2's were in the
40's. Kevin was
transferred to a major
medical center, where he
went on ECMO for 7 days.
He had many, many
complications, but they
saved his life.
posted
12/20/2004 |
|
Pam Montgomery
pam256@charter.net
On
December 8, 2003, my
husband, Chris was
having chest pains. I
took him to the hospital
and within the next 72
hours or so, he
underwent open heart
surgery (5 bypasses).
This surgery was very
successful. However,
within 24 hours of this
surgery, Chris developed
ARDS and was placed in
an induced coma with a
ventilator and feeding
tube. His lung doctor
was very clear with me
that it was going to get
worse before it got
better. He was so right.
We had Chris's son
brought home from Iraq,
I had to explain to our
then 6 and 8 year old
where their dad was.
Chris was in that state
for close to three
weeks. Although his
lungs were beginning to
show some sign of
improvement, he still
continued to run a
fever. Infectious
Disease was called in
and it was determined
that his gall bladder
had become infected due
to inactivity and a
drain had to be
inserted. After a month,
Chris was able to come
home but it has taken
nearly a year for us to
work through not only
physical issues, but
moreover the emotional
baggage taken away from
such an experience, not
only on his part but
mine as well.
posted
12/19/2004 |
|
Trish
tlhhh@aol.com
My
husband Bob was
scheduled for surgery on
June 10, 2004. Within 15
hours after surgery,
which appeared
successful at first, he
was admitted into the
ICU for severe sepsis.
He was immediately
intubated, placed on 9
different medications,
and various IVs were
surgically placed in his
body to monitor body
fluids. After the first
3 days, it was confirmed
that he also had ARDS.
Through the next 90
days, he was intubated
for 60 of them. For
those 60 days he fought
one bout of sepsis,
ARDS, peritonitis, and a
second bout of sepsis.
After the 3rd week I
consented to a
tracheotomy, in hopes of
reducing chance of
infection and to enhance
the life support system.
On the first day, he was
also placed on a Roto-Rest
bed that as best as I
can describe, looks like
a Frankenstein bed that
he was strapped into on
his back, which then
rotated him 60 degrees
from side to side. The
bed was used to help
keep the fluids
circulating in his lungs
and body. He was on
paralytic medication,
pain killers, and heavy
doses of versed. He
remained unconscious,
from the drugs, during 6
of the 8 weeks of the
time in ICU. Eventually,
as the sepsis infections
were under control, he
was able to get stronger
and get off the life
support. The fight to
beat ARDS was not
accomplished by one
treatment. He survived
because of the lower
settings of PEEP on the
ventilator, the use of
steroids, the
paralytics, and the Roto-Rest.
Today he continues to
fight mycobacterium
infections that have set
in the suture site, BUT
he's able to breathe on
his own and in fact, has
done so since August.
The infections are
probably due to the
autoimmune system being
compromised by the
months of antibiotics
and the steroids. But
those decisions were
made at the time,
knowing there were
risks, in order to save
his life then. Stay
strong and make the
decisions you have to
make at the time, to get
your loved one through
that day. Talk to your
loved one. Play music he
loves. Be there when
he's bathed and take
part in his daily care,
as much as you can
tolerate.
posted
12/7/2004 |
|
Elizabeth
ejhenn@earthlink.net
My
son Joe became suddenly
very ill and within
hours was on a
ventilator. He remained
medically paralyzed &
sedated for 4 days, in
ICU for 6 days and was
discharged out of the
hospital after 10 days.
This occurred from
October 10-20, 2004.
posted
12/1/2004 |
|
Patrick
pdwitham@aol.com
It
started in Washington DC
two weeks before
Christmas in 2001. I was
in a class when I
received a cell phone
| |