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 ARDS–a 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.