Jane Gibson

Meningococcal disease at 1

Meningococcal disease

Bill had been busy for a week or two and was tired and feeling as though he was coming down with a cold.  On Wednesday he set off to a meeting down in the Midlands.  On the way home to Lockerbie he stopped for petrol and as he got out of the car he suddenly felt really exhausted, but with a struggle he filled the tank and drove home.  When he arrived all he wanted to do was sit down, not even interested in a meal.  Shortly he took himself off to bed saying he felt miserable and feverish.  At this stage I would say he looked pretty rough as though coming down with a bad bout of flu.  As the evening progressed he felt his joints getting sore and was not able to get comfortable.  The night was spent tossing and turning with not much quality sleep.

Before going to work the next day I went to the chemist and asked for the strongest flu remedy they had, as I had a very miserable man at home.  I made sure he took the first dose though it was a big effort for him.  I left him in the care of our daughter and granddaughter of six months and went to work at lunchtime.  Bill was still very sore in the joints and I would say that was his biggest complaint, other than feeling really rotten with a slight headache.

At 3pm I received a phone call from our daughter Morag to say Dad had noticed black marks on the back of his hands and on looking found his elbows and knees had big black bruise-like marks also.  I put the phone down and was just wondering what could be wrong when from the depths of my mind came MENINGITIS!  Surely not, because he is 48 and children get meningitis, not usually adults. I called the doctor, and asked could he please do an urgent home visit because I was thinking of meningitis.  He went straight away and, though not sure of a diagnosis, gave Bill a large dose of penicillin as recommended for the initial treatment for meningitis and sent for an ambulance.  By 5pm Bill was in hospital being seen by a consultant.

The consultant did a full examination of Bill who was still feeling rough with his joints being very sore.  The consultant thought the problem was maybe something to do with the kidneys and we should not worry.  Bill told me to go home and reassure Morag and his parents he was OK.  Before going I set up a support to keep the covers off his legs because of the pain; there were no cages available so I improvised with a bedside table.  At this stage no nurse had been in to see him other than to say a quick 'Hullo'.  I went home and had a cup of tea then returned to the hospital.

As I arrived back Bill acknowledged my arrival and said a nurse had been in to take a history.  A colleague arrived to take a chest x-ray (I am a radiographer) after which we had a wee chat.  All the time I was watching Bill and I noticed he was not paying much attention and he was not as restless as he had been.  As my friend left I went over to him and saw he was looking up at the ceiling and not responding to my voice. I was not happy with this and went to the door and shouted for a doctor NOW!  They came running, took one look and said they were moving him through to the coronary care unit.  Things moved fast as they realised how poorly he was and I was directed to the waiting room.  They worked on him for a while then the consultant came to me with an antibiotic, which I had to take immediately and then I had to give the same to our daughter and granddaughter, thus requiring a trip home.  We live 12 miles from the hospital and I was barely in the door when the phone rang: "I don't want to worry you but we think you should come straight back to the hospital, Bill has stopped breathing."

When I got to the ward the doctor came and told me Bill had stopped breathing and they had put him on a ventilator and he was transferred to the Intensive Care Unit.  My mother-in-law had come to give me some support and we went down to ITU to the waiting room as the anaesthetist was still working on Bill.  It was a wee while before he came to speak to us.  He said: "I don't beat about the bush so I will tell you how it is.  Bill has meningococcal septicaemia and has a 30% chance of survival.  We will not know how he is till he comes off the ventilator in a few days.  Be prepared for anything."  As I have said, I work in the hospital and see patients in intensive care often but it is a totally different ball game when it is a relative in the bed and you see all the tubes and things in a new light!  We stayed with Bill only a short time as there was still work to be done.  As I knew things would take time and there was absolutely nothing I could do we made the decision to go home to bed.  It was very difficult to leave.

After speaking to everyone at home, Granny and Gramps had decided to stay keeping our daughter company. I managed to sleep for a wee while and I can still remember the feeling of waking up after a nightmare only to realise it really was happening.  There is no way to describe the way I felt.

Bill was in intensive care on the ventilator for six days. The dark patches on his skin had grown and were huge blood-filled blisters, the worst being at his elbows and on his feet.  His organs were not responding well and there was even talk of dialysis for his kidneys at one stage.  However, he managed to struggle on and apart from one abortive attempt at coming off the ventilator the decision was taken on day six to try again.  This time it was successful and I was frightened of what I would find, would he know me?  When I went in and spoke to him he opened his eyes and tried to speak.  His throat and mouth was dry and all he managed was a croak.  I asked if he'd like a sip of water, a nod of the head.  Oh good, that meant he was able to understand what was said.  I gave him a sip and he tried to speak again.  This time he had me, and the nurse in attendance, in tears as he looked at me and said: "I love you!"

What a relief it was to see him conscious and knowing everyone.  It took a long time for his recovery and he had withdrawal problems from the drugs he was given in ITU.  These included hallucinations, which he found very disturbing, though with hindsight amusing as he remembered them later on.  He was so weak for a few days that he was being fed by me, being shaved by me and generally having everything done for him.  During this time he developed a problem with his eyesight and had to wear a patch. His knee developed fluid that had to be drained off daily for a week.  Bill had then to build up his strength to walk - he used crutches up and down the ward corridor slowly getting stronger.  To the amusement of all, a nurse blew up a rubber glove and drew a parrot's face on it then stuck it on Bill's shoulder!  In all Bill had to stay a further three weeks in a general ward till he was allowed home.  The staff became good friends and were a great support though I tried to do as much as I could to save the nurses' time.

Bill's elbows and feet where the bruises had been became horrible sores, which actually took many weeks of careful dressing to heal over.  Eventually the sores did heal and I found that massaging his feet helped with the circulation and this I think helped the healing.

It was months before Bill felt his strength was reasonable and able to try the challenge of work.  This was harder than he expected but eventually he did manage to get back in the groove.  There have been little changes in character and temperament, but nothing that cannot be managed.  We are so lucky to have him with us.

While Bill was in hospital I kept a diary so I was able to track his improvement over the ensuing months and, as recovery is so slow, this helped us to see that things were moving on.  I found that writing the diary up each night therapeutic in understanding what was going on and why.  Bill has tried to read this diary but has never managed yet as he finds it very disturbing.

Our first contact with the Foundation was in the January after Bill was in hospital.
I wanted to do something in return for Bill's recovery so we drove up to Edinburgh and met everyone.
As I was working in Dumfries, I realised I would not be able to do a lot in Edinburgh.  However, I knew there had been deaths in our own region among older teenagers so I decided to ask to give a talk to fifth and sixth year pupils at the school that had been affected in Dumfries.  I then approached other schools in the region and asked if I could speak to their pupils.  I had a very good uptake and over the next three years I believe I did about 40 presentations, including some to playgroup leaders and one to The Round Table.  I covered Lockerbie, Dumfries, Newton Stewart, Dalry and Stranraer.  This was done in my own time and at my own expense but with supply of leaflets and information from Edinburgh.  
We also did a few days of manning a stall in the Dumfries shopping centre and at the Dumfries Agricultural Show.  After three years I found I was finding it hard to manage. I gave the display boards I had applied for and got from Lottery funding to the Edinburgh office for their use.