| Through
the eyes of his sister, Emma Holden
Across the sea from England
I want to write this story down because it's a story of
bravery and courage against an opponent. Its about my brother's fight for life against
ARDSa syndrome that is little known but as vicious a condition as cancer or
meningitis. I don't know anyone personally who has been a victim of cancer or meningitis
but there is at least a public awareness of what those conditions entail. ARDS-Adult
Respiratory Distress Syndrome still claims a high mortality rate and that has remained
unchanged in the last 30 years despite all the progress in Intensive Care medicine. Yet
outside the medical profession it is virtually unheard of, a fact which makes coping with
it all the more difficult.
My brother's story began June 16th, 1998, when he left
work early because he felt unwell. He went home and went to bed feeling as though he had
the 'flu.' Wednesday the 17th of June he spent in bed, convinced he could shake off his
'flu like' symptoms and pain in his chest by resting. By Thursday he had not improved and
my mother called the GP out. He diagnosed pneumonia and ordered an ambulance to take
Alistair to hospital. At this point no one, least of all Alistair, was unduly perturbed-it
was expected he would spend a fortnight or so in hospital and fully recover. On Thursday
the 18th June my mother called me at 10.00 at night-she had just been told by Crawley
Hospital that my brother had been moved into Intensive Care: the nightmare had begun.
When I arrived at Crawley Hospital the next morning at
10.00am I was told my brother had gone into septic shock shortly after showing severe
breathing difficulties. He was unconscious and sedated with tubes in his neck and on a
life support machine. We just could not understand what had happened. The doctors told us
he was critically ill and the next 48 hours were crucial. I made arrangements to stay down
in Sussex until the Sunday and spent virtually the whole time at the hospital staring at
the machines that showed heartbeat and oxygenation trying desperately to read signs of
improvement. Sunday evening Alistair was visited by the registrar of ICU Middlesex
Hospital in London which specialises in lung conditions and the decision was made to
transfer him to the Middlesex by ICU ambulance.
I went home briefly and returned to London on the 23rd
June. At first I didn't recognise my brother-he was quite a thin man, but had become
bloated by the combination of drugs. I remember I went to the Hospital Chapel and prayed
so hard-Don't let him die!Please God,don't let him die! It was only on that
first visit to London that the condition ARDS was first mentioned. I felt strangely
reassured that there was a name for what had happened to him. And over the ensuing weeks
and months I was to learn a lot about ARDS-it is an acute condition of the lungs whereby
the capillaries that service the alveoli leak liquid back into the lungs . Medical
research has not established the reason why this should happen. It happens as a result of
an insult to the body but this does not have to be a pneumonia, it could be a trauma. And
just as they do not know why exactly some peoples' lungs react this way, so they also do
not know how to reverse the condition. The medical treatment is to try and stabilize the
person and treat any underlying infection and support the lungs by a ventilator. The whole
process is a balancing act as the lungs are extremely fragile and inflamed.
Over the next week my brother was turned onto his front
to help his oxygen levels. He was still unconscious and paralysed by drugs so that he
could not move his limbs. But the doctors showed some optimism that things were going in
the right direction, this despite the news that in his second week there he became
infected with MRSA (editorial note: Methicillin-Resistant Staphylococcus Aureus, bacterial
infection difficult to treat). When I visited him on Saturday 4th July he was being weaned
off the sedation and he opened his eyes for the first time. We began to be hopeful. He
could not speak or move because he had no voice due to the tube in his trachea but he
could mouth some words and use facial expressions.
Our hopes were short-lived -on Thursday 16th July he
seemed bright, but a red rash was appearing on his chest - looking just like a large burn.
It turned out to be shingles and the trauma of that pushed him back into crisis the
evening of July 18th. I was out for a meal in Warwick and took the call in the restaurant
from my mother. It was all touch and go again.
I was in London four times that following week-by the
weekend things were looking very bad-his oxygenation had gone down, he had severe shingles
and MRSA in his bloodstream. But incredibly he was still fighting. Alistair was not
particularly a fit man-he didn't do any sports and was lean to the point of thinness. But
he had incredible strength of character and willpower and determination and it was as
though that alone was enough to fuel his fight. The doctors and nurses admitted they were
amazed the way he battled on.
Until my brother became ill, I and my family had no
experience of intensive care-we had all seen the films and imagined Intensive Care to be a
place you were in for a few crucial days when you either made it or didn't. But with ARDS
the time in Intensive Care stretches into weeks and months. That meant none of us could
sit at the hospital and let time stand still, but that we had to go home, continue in our
jobs and with our own families with this terrible situation ongoing. When a person has
ARDS, they are at first paralysed with drugs to prevent them moving but after a few weeks
in ICU they are paralysed because their muscles have weakened so much they cannot move
even if they wanted to. They lose weight, after 6 weeks Alistair had lost about 2 stone
and he was a thin man to start with. For us visiting him, trying to be positive it was
draining just to see the physical wasting of a young man.
For about 6 weeks there was no improvement and things
looked very bleak. Then I remember a visit on the 31th August when for no apparent reasons
the blood tests suddenly looked better. There was some optimism from the doctors and
Alistair was conscious again for some short periods. We hardly dared believe it because by
now we were suspicious of this roller coaster called ARDS. The oxygen levels seemed to go
in the right direction but progress was slow, agonisingly slow and we knew that it had to
be quicker because all the time he had other enemies behind him-he was so weak and
emaciated that he was prone to any infection, one of the wounds made by the chest drain
would not heal, the MRSA would not respond to any antibiotic and all the time there was a
danger of his kidneys failing. I kept trying to gauge how much rope he had behind
him-trying not to panic, trying not to burst into tears every time I saw him.
I remember the trips to the Middlesex as though I were
in a haze-death numbs the senses they say and near death does the same-I spent 2 hours
getting to the hospital: the drive to the station, the stress of not finding a place to
park, the urge to shout that I must have a place to park because my brother was dying, the
walk down the Marylebone Road, the sickening feeling of anticipation as I entered the
hospital wondering and dreading how I would find him. I remember one visit staring at the
drug addicts outside the hospital waiting for their fix and being shocked at the irony of
my brother inside fighting for his life . ARDS is not necessarily a terminal disease so
this makes it harder because you cannot lose hope and face the inevitable-the doctors
always told us it was grave but there was still hope-they still took the risk of taking
Alistair down for a CT scan trying to establish the extent of the inflammation.
The optimism of a recovery in September waned
slowly-there was not a turning point when we knew that things were irreversible but there
was a gradual loss of hope. Those weeks in October and November were the hardest of
all-because Alistair was conscious, not sedated ,not paralysed by drugs but nonetheless
paralysed, staring at us in hopelessness as we tried to be brave to match his bravery. I
couldn't give up hope, could not believe that he had fought for so long only to lose the
battle. To me that was unthinkable.
November 28th was his 37th birthday. He had had a bad
week and seemed to be unconscious, or at least lay with his eyes closed, unresponsive. We
brought him presents and tried to waken him, but only once did he barely open his eyes. On
Monday they admitted there was nothing more they could do and gave us the choice of
reducing the drugs immediately or keeping him stablised. By Tuesday 1st December it was
evident a slow decline was in progress. On Wednesday 2nd December I went down to the
Middlesex for the last time. They reduced the drugs and the speed of the decline took us
by surprise. He had fought his battle and lost and was in a hurry to go. We just got there
in time as he slipped away. I stroked his head, stunned by grief, overwhelmed that this
could happen. Later I had to make my way home on the train, sitting amongst hoards of
Christmas shoppers, just numb.
Alistair spent 168 days in Intensive Care. The pattern
of the illness: the numerous crises, the periods of recovery the devasting stress of
living on a knife-edge for the patient's family is typical of the syndrome, the length of
time he struggled to live is exceptional. In retrospect we question the purpose of the
life support he received because it only prolonged his agony; at the time we clung onto
its ability to give him the chance he needed. Even months later we are left with so many
questions. What we don't doubt is if recovery were based on courage and effort he would be
with us today. |