Dear ARDS Support Center,
I am alive and relatively well since my experience with ARDS from
February to March 2004. I remember very little however at the suggestion
of your website my family kept journals. The last thing I remember was
being in ER and the seventh attempt to put in an IV. The first thing I
remember afterwards is fear that I was dying (although I was really past
the worst and about to be extubated). Then I asked about my dog.
Your website and the links allowed my family to understand what was
happening to me and to dialogue with doctor's in an informed way. Most
of them travelled from England when they heard I was in ICU but ARDS was
not yet diagnosed. By the time they were picked up at the airport I had
lost the ability to breathe on my own and the infection that preceded
ARDS was rampaging through my body. I cannot imagine what that was like,
to arrive after 12 hours of flying to find how quickly I had gone
downhill. No one in our family has ever been in hospital for more than
one or two days and it was always relatively minor.
To date my mother cannot go into a hospital anymore nor can she watch TV
shows where monitors are beeping in hospital rooms. She was the one who
took me to the hospital and the first to receive the news of my ARDS and
the mortality rate of it combined with sepsis. The courage of my family
was amazing. One of my brothers, Paul, purchased a textbook on ICU
medicine and proceeded to speed read through it on the first day. The
poor doctors were hammered with questions at the family meeting held
every morning at 11am. My other brother John had studied diving and
related fields so he knew all about PEEPS and such. My mother is a
retired science writer and my father is a retired Prof. Of Biochemistry.
My sister, Geri, did not pursue science and kept asking for the Cliff
Notes version - which had I not been so sick would have been quite
funny. Geri contacted friends and family members all over the world by
email and telephone. She kept them up to date with my progress
I was never left alone, without a family member present, for any
procedure except one (the doctors wouldn't let someone come in). A
couple of friends were allowed in to "talk" to me while I was in a coma
and one looked after my beautiful Husky, Boo Boo. My father kept telling
me that my dog was OK. Apparently there were differences of opinion
about my music tastes and Paul thought to get the CD's from my car
stereo figuring they were my favorites. Geri says that had I been awake
I would have peed my pants laughing at the interactions of my family
with each other. They even thought about whether my brother John should
"talk" to me in case it made me realise how sick I really was (very
little pries him away from his loving family in England). John wanted to
take pictures of me should I want them later but the rest of the family
It is hard for me to understand the severity of what happened. My post
extubation progress was quite amazing by all accounts. I, of course,
found it extremely frustrating. Poor fine muscle control, no appetite,
sore throat, shortness of breath, unable to stand unaided, unable to go
pee without help and so on. When I got home to my mother's house, my
biggest fear was that the bathroom was ten steps further away than the
one in the hospital - no one wants their mother cleaning up that kind of
accident for them at 36 years old.
My family knew I was a feisty one and thought if anyone could pull
through this I could - had I been aware of what was happening I confess
to being unsure.
I am forever in the debt of my family, doctors, nurses, respiratory
therapists, physical therapists, occupational therapists, nurses aides,
friends, priests and this website. How do you thank people for your
life? It seems so inadequate. My main ICU nurse had lost her husband to
ARDS about a year before and she was outstanding in her care of my
family and me.
Moments like having my first shower, going potty on my own, making
dinner for myself, holding my niece, walking my dog, going to the store
all became amazing events instead of plain vanilla life.
My father and brothers have returned to England. We are trying to get on
with normalcy - whatever that is.
Live the life you kept to the full.