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(by Pauline)
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since May 2004

Gary came in from work. It was a lovely May evening and he intended to mow the lawn. "Make me a cup of coffee" he cajoled. As I went into the kitchen and flicked the switch to heat the water I little suspected that in the time it took for the kettle to boil our lives would change forever.

We had been married just under three years. Like many young couples, we were working hard to pay for our home and the necessities of life. In a year or two we hoped to start a family. When I met Gary he was recovering from misdiagnosed appendicitis. Amazingly the doctors had refused to believe there was anything wrong with him and he'd developed peritonitis. He'd been extremely ill and not expected to recover. He suffered two strokes which affected his speech and walking. He was 26.
He'd needed a second operation, several months later, for which he'd been given a 50% chance of surviving.
This was now behind him. He'd learnt to talk. He could walk without his stick. He'd gained weight and looked healthy. He still tired easily and had an odd boil which always appeared in the same place and required anti biotics. Otherwise his recovery was quite remarkable.

As the kettle boiled I made two cups of coffee and took one in to Gary. He was slumped in his chair, asleep. I placed it next to him and gently woke him. He stirred but did not really wake.

Gary was born in 1950 and placed for adoption. He weighed over 9lbs at birth and must have appeared perfectly healthy as, in post-war Britain, an unhealthy baby would have been rejected for adoption.
In fact, his notes state that he was healthy and he was adopted at 8 weeks. He was removed from his biological mother in a closed adoption, thus shutting him off from any genetic knowledge. (A source of much frustration for me!)

As a young child he had several 'odd' health complaints:
He had migraines which were treated with some type of ear cleaning by a doctor - the treatment worked.
He had heavy and frequent nose bleeds which sometimes required medical intervention to stop. He would require adult doses of antibiotics when ill.
Sometimes during these times his temperature spiked abnormally high. He had an allergy to penicillin.
He was a sickly child who found reading and writing difficult, although he shone at maths. He missed a fair amount of school through minor complaints.

Gary remained asleep for the rest of the evening. The next day he didn't go to work. He seemed to have a stomach upset and although I was concerned I wasn't unduly worried.

As a teenager Gary's health improved. Always tall for his age, he grew throughout those years and reached his adult height of 6' 2".

At 14 he was diagnosed with an eyesight condition which couldn't be helped with glasses. (In 1986 he was admitted to hospital and thoroughly tested. He was diagnosed with a hereditary, non degenerative condition of his optic nerve).

He left school at 16 and started work in an office, as an accounts clerk. (Figures, no writing involved!). For the next 10 years he had 10 days off for illness...and 2 of those were really to go to weddings! He was remarkably healthy.

The following day Gary was still ill, and so I called the doctor out. I still wasn't unduly worried and the doctor reassured him that it was gastro-enteritis.

When he was 26 he suddenly developed stomach pains which were severe enough for his GP to diagnose appendicitis and admit him to hospital. He was sent home as his symptoms weren't consistent with appendicitis.
The pain continued and he was admitted again. Again he was sent home. The pain did not subside and so he was admitted again - and again he was sent home. The pain persisted and so he was admitted yet again and yet again he was sent home. Four times the specialist refused to accept there was anything wrong.

On the fifth attempt to admit him the specialist again wanted to send him home. His GP intervened and Gary was sent instead to Monsall Hospital in Manchester. There he was initially diagnosed with Infectious Hepatitis (Now called Hepatitis A) and kept in isolation. After a while his symptoms were not consistent with Hepatitis A and he was transferred to the Jewish Hospital where he was operated on. By now peritonitis had set in. He was put into ICU, very seriously ill. The doctors not sure if he would pull through.
Obviously he did but he faced another operation as his bowel had been damaged too.

Two days later Gary showed no sign of improvement and so I called out the GP once more. Now I was becoming concerned. Gary was complaining of a right hand abdominal pain that he'd experienced once before when we were on holiday for a few days. He'd had a stomach upset then, but it was much milder than this one was. The GP diagnosed severe gastro-enteritis.

Over the next 12 months Gary had operations to repair the damage caused by the peritonitis - gall bladder removed, bowel 're-routed' etc. He was given large doses of drugs - the impression is that they were throwing anything down him in the hope that it might work. He had two strokes - thought to be due to the medicine. He had pulmonary emboli - again, thought to be due to the medicine.

Once he recovered from his appendicitis he was the subject of medical lectures. He describes these as sitting about while the doctors discussed his medical symptoms in a language which went way above his head - then he would answer a few questions directed to him. Then he went home!

I met him when he was 30. He was underweight, pale and had little energy. His balance had been affected by the stroke and he needed a walking stick. Over the next few years he fought his way back to health. His balance remains a problem to this day - it seems that the strokes affected his knee-jerk reflex, which is apparently what stops us from falling over! But he got rid of the stick, he gained weight and his colour returned. He has always remained a little more tired than most people of a similar age.

Over the weekend Gary deteriorated. I did not realise it but by Sunday evening he was dehydrating. This was a frightening experience - Gary was confused and forgetful and drowsy. I should have called an ambulance but I didn't then know the symptoms of dehydration. I rang the doctor on Monday and the GP diagnosed a twisted bowel. He admitted him to hospital.

There Gary was X-rayed, poked and prodded until the specialist diagnosed - a twisted bowel. During the following days they ran every test imaginable on him but they could not diagnose what was wrong. They even performed an exploratory operation but it showed nothing amiss.

Meanwhile Gary was becoming weaker and weaker. The diarrhoea was constant and he could not eat. His weight dropped to below 9 stone and he was skeletal. He was depressed and lethargic - and simply not himself. Conversations were difficult.

Eventually an abscess was diagnosed. Initially it was treated by medicine but it did not respond. And so on June 6th - exactly a month since he first became ill - Gary went to theatre to have it removed.

He was third from the bottom of the waiting list, it was a minor operation. I visited him beforehand and then went home to wait for news. I waited. I waited. I phoned the hospital to be told he was still in the theatre. As he was when I rang again. I knew something was wrong. Then at 7.15pm the phone rang. It was the Ward Nurse, telling me that Gary was very poorly in theatre and would I come at once.

I arrived at 8pm. He was still in theatre - the surgeon was fighting to get him out and into ICU still alive. By 8.45pm I could see him. He looked very peaceful. I was warned before I went in that the machinery would look frightening. I wasn't afraid - this was what was keeping Gary alive. He was on a ventilator but I was told he could breathe unaided. They were effectively shutting his body down to give him a chance of survival.

I was told that once the surgeon started to operate Gary's bowel literally dissolved in his hand. It had been removed and an emergency ileostomy formed. He was now fighting peritonitis and septicaemia, both potentially fatal. He was weak and malnourished. The prognosis was not good.

I was sat next to him, the nurses put his hand in mine, and waited for him to die. I was 27.

After a few hours he looked grey. I was sure that this was it, but the nurses were excited. He was starting to come out of the anaesthetic and this, apparently, was a good if unexpected sign.

Throughout the night he continued to make progress. He came round a few times and although drowsy and unable to speak due to the ventilator - Gary was back with me. The stranger that had been here for a month was gone. Gary was seriously ill and fighting for his life but the cause of his illness had been removed in the theatre.

The next few days were a living nightmare. Gary continued to make progress but there were one or two set backs, the worst of which was when he was taken off the ventilator and his lung collapsed. I was rushed outside where I watched in horror as three doctors ran down the corridor to save him. During those few hours I discovered what the idiom 'climbing the walls with anxiety' really meant. If there had been a ladder available, I would honestly have climbed it. Instead I spent the time pacing the corridor and talking to a nurse who came to sit with me awhile.

After this agonising wait I was allowed to see him. He was back on the ventilator and breathing well. The following day they told me he was being taken off it again - and this time it all went smoothly.

It was now four days since his operation. As each day passed his progress was steady. The nurses stopped telling me how ill he was and instead started talking about his recovery. At this stage I decided I had better find out what an ileostomy was and how to look after it.

I have always been interested in medicine and how our body works. As Gary started to recover the nurses explained all the machinery to me - and even showed me the daily X-rays for the patients! Gary had three antibiotics running as IV drips. He also had a tube sewn into his chest which was feeding him four IV fluids. He was given plasma too.

The stoma care nurse saw me and explained what an ileostomy was. Gary had had his large bowel removed and the end of his ileum had been brought out of his body as a stoma. Waste was now collected in a bag. All the staff had been careful when discussing this with me, as if they expected me to be horrified. I wasn't. Without this stoma, Gary would be dead. Because the surgery was an emergency procedure Gary did not have a conventional stoma. It was literally the end of the ileum and would prove difficult to manage in the future.

After three weeks in ICU Gary was transferred to an ordinary ward in our local hospital. The nurses there were kindness personified and allowed me to visit from just after dinner until the end of visiting. (This was in the days when visiting was far more restricted than it is now). It was important that Gary started eating (he was still wired up to his drip) and so I prepared small meals for us in the hospital kitchen and then ate with him. By doing this he brought his weight up to 10 and a half stone, at which he was able to come off the drip.

The nurses soon realised that I wasn't squeamish and allowed me to remain while Gary's dressings were being changed. As well as his ileostomy bag, Gary had his mucous fistula which drained constantly onto his stomach, loosening the flange. He also had a wound where a tube had been on his left hand side which needed changing too.
Gradually I was asked to help, which I did willingly. I was virtually living at the hospital so I may as well make myself useful. Had I been more alert I may have realised what was happening - but I was too anxious and worried about Gary to notice. It was a Junior nurse who asked me if I was being trained to do this so Gary could come home. Then I realised why I'd been asked to help!

The nurses were concerned that the ward wasn't the most suitable place for Gary. There was no Day Room. All the current patients were elderly. The ward sister thought he would recover more quickly at home. We lived only a mile away. If anything went wrong we could be back on the ward within minutes.

Gary was allowed home for 36 hours as an experiment. I took him down to the car in a wheelchair. Once home I sat him on the settee and then let our dogs in one at a time. The two labradors came in quietly. If a dog could tiptoe that's what they would have done. They sat down either side of him. The third dog, a mixed breed, came in and ran up the side of the settee and down the other side in excitement. But never once did she touch Gary. And not one of the dogs jumped up at him or was rough in any way until the day he returned from having his stitches out.

The 36 hours went well. Gary walked around inside the house, rested and slept and ate. On his return to the hospital he walked onto the ward. The nurses' faces were a picture, they couldn't believe the change in him.

He was allowed to come home two days later. He had been in hospital for 10 weeks. We had to report to the ward every other day as a precaution but Gary made good progress.

His ileostomy proved difficult to manage and so for three years I nursed Gary, changing his bag and the dressings. The wound eventually cleared up but the mucous fistula continued to drain and be a nuisance.

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