A DEATH TO DIE FOR (3 page)

I had a sudden stabbing pain in the back of my hand as the liquid started to be pumped into a vein which forced me to close my fist and my sharp intake of breath caused another coughing fit, the senior nurse said that unfortunately the pain was to be expected but it would ease as the process settled in and then she gave me an injection of penicillin.

They didn’t quite manage to stick to the 30 minute gaps between lung capacity tests so by 8.00pm I had been tested twice more and the lung capacity readout had remained pretty much the same and by now Helen looked exhausted, hardly a surprise after the days events.

She could do nothing more and knew that I was now receiving treatment and in the best place if something went wrong so we agreed that she should go home and try to get some rest and as she worked at the hospital for a full day on Monday that unless something untoward should happen she should come to work as normal and keep a check on my progress during the day.

Helen drew the curtains back, made sure that my clothes were tidied into the bedside locker and reluctantly walked out of the ward blowing a kiss to me at her final departure.

This was the first time that I really had a chance to notice the other patients in the room, there were seven other beds in the ward and nearly all had an occupant in various stages of sleeping and dozing all no doubt coming to terms with the symptoms of their own conditions and emotions, the only active person was in a bed opposite and to the left of mine.

He called out Hi! and asked how I was coping, I tried to answer him but my voice was nothing but a hoarse whisper and in trying to speak it caused another coughing fit so I acknowledged him with a wave, he gave me an sympathetic smile and said that he had just returned from abroad and was suffering a severe chest infection himself, I nodded my understanding in return – I think he told me his name was Ken.

It must have taken over the hour for the contents of the first bottle of IVIG to be infused, because it was well after Helen had left that the duty nurse who was checking my progress found the first bottle was empty and that she needed to replace it with a full one informing me that she would have to up the pump rate as the other nine bottles had to be infused by the morning.

She connected the new bottle and adjusted the flow rate but when she switched the pump back on the pain was much more severe, it felt like the back of my hand would explode and beads of sweat erupted on my face but I knew that there was nothing I could do but suffer the pain.

As the evening wore on I decided to try to get into bed, so carefully manoeuvring around the various pieces of equipment with my arm still laid on the over bed table I managed to get onto the bed without incident, I tried to lay down but straight away the incessant coughing started again so with my arm still on the pillow I carefully worked my way back into the chair – it seemed quite an achievement at the time.

With my free arm I struggled to once more pull the blanket over my shoulders and by laying my head on the pillow next to my arm I found that the coughing was not so bad and I was able to gain some fitful sleep however when I did cough the blanket tended to fall off of my shoulders making me cold and with only the one free hand it was difficult to put it back in place.

It was at this time that Ken restored some of my faith in human kindness when he got off of his own sick bed, walked across the ward and adjusted my blanket so that it would stay in place

By 6.00am on Monday I had successfully overcome the ordeal by spirometer but there was still a bottle of IVIG to go and the nurse woke me to go through the changeover, I didn’t feel any better at all in fact my hand felt as though a horse had kicked it and I had a tremendous headache.

I hadn’t eaten anything now for nearly three days and only managed small amounts of fluid but strangely food and drink did not have any meaning for me, they didn’t seem to register at all however my stomach did feel very watery and every time I coughed I felt that I might throw up, I mentioned this to a nurse who gave me of those grey pressed cardboard vomit bowls to keep by me just in case.

A short while later a nurse came round with a plastic bowl of tepid water, soap and a flannel, she carefully moved my arm and the pillow from the over bed table and laid it on my lap and then placed the bowl on the table, she then proceeded to gently wash the sweat off of my face and my arms, the cooling effect of it evaporating off of my skin was the only pleasant sensation I had felt in the last twenty four hours.

Ken walked past the bed and asked was I feeling any better, I managed to croak out not really but thanked him very much for helping with the blanket during the night, he said to think nothing of it.

At about 7.45am Helen arrived in the ward, she had come to see me before starting her days work, she looked brighter than the night before and her warm smile arrived at my bedside long before she did, she sat on the edge of the bed and gently kissed my forehead. She asked how I felt but I could not pretend that I was feeling any better than I was but I managed to whisper to her that I had got through the night and apart from my hand hurting and the nauseating headache I had not deteriorated significantly although I was concerned that my left arm and shoulder were noticeably weaker.

We agreed that Helen would come back at her tea break and hopefully by then the consultant would have done his rounds and he might have a clearer idea of what my illness was and what could be done about it.

Just then the senior nurse arrived at the bottom of my bed and proceeded to put another 10 bottles of IVIG on the over bed table, she could see my expression of incredulity at having to suffer another eight hours of infusion and explained that this is what the consultant had prescribed.

So you can imagine that after not eating for three days or showering and shaving for two and with a very sore hand and stinking headache I was not in the best frame of mind when the consultant duly arrived with an entourage of junior doctors.

I was still sat in the bedside chair with a blanket over my shoulders, with another over my knees and my left arm resting on a pillow laid across my lap, they examined my notes and discussed my current condition and then the consultant asked me how I was feeling.

I think had I been in top form he would have received a fairly acerbic reply however all I managed to splutter was that my hand hurt, and that I was very concerned about my headache and blood pressure levels which had been recorded at a very high figure something like 210 over 112, he checked my notes again and said that he was happy that this was a temporary situation and replacing my notes on the end of the bed the whole group moved onto the next patient.

I was completely phased by this as my GP had spent the last three years trying to get my blood pressure under control and now it seemed that it was all going to pot.

This brought me to such a low ebb that I just gave into my emotions and tears started to run down my cheeks and I was still in a state when a young nurse came to do my ‘obs’ she asked what the problem was and I repeated that because my voice was weak I felt that I was not being listened to and that no one was any taking notice of my concerns over my blood pressure levels or more particularly my headache which worried me a great deal as both my parents and three of my grand parents had died from cerebral haemorrhage.

By now the consultant and his team had left the ward so she asked me what she could do to help, I replied that if she could get me something to write with so that I could send a note to the consultant it might get the message across. She went to the nurses station and returned with some paper and a pen. I scribbled a note and asked her if she would take it to the consultant, which she did.

It’s amazing what the written word can achieve, the final bottle of the first batch of IVIG was now empty and it was about to be replaced with a new bottle when the senior nurse returned and said she was not going to connect it as the consultant had requested that I go for a CT scan, the thought of not having to continue with the pain of the infusion was one of those little victories which can brighten your mood no matter how hopeless things seem.

However when Helen arrived back in the ward I became overwhelmed again and through a mixture of sobbing and coughing I managed to convey what had happened, she looked concerned but said that she was pleased that I had sent the note and asked why I was being sent for a CT scan, I said I didn’t know but hopefully it would throw some light on the situation.

While she was there a porter arrived with a wheelchair, Helen helped me to transfer between chairs, she wrapped me in the two blankets placed the vomit bowl on my lap and held my hand and walked with me as I was pushed out of the ward, she said that she would come back at lunch time to see how things had gone.

The air was cooler in the corridor and people were moving purposely about going this way and that, the porter tried to chat but because of my lack of voice I could not reply so the journey to the radiology department was mainly in silence, when we got there I was parked next to a wall and the porter gave my notes to one of the assistants who then came across to me and as they do asked my name and checked my wrist band after which she entered through a door in the opposite wall.

After a while she reappeared and wheeled me into the scanner room, I had had CT scans before and so I was not phased by the sight of the large white vertical doughnut at the end of the bed in the middle of what was a fairly small room but I did remember the claustrophobic feeling of being inside the scanner.

A disembodied voice called my name over a speaker and I turned to face a small glass panel in the wall at the foot of the bed where a lady who looked quite green behind the glass spoke into a microphone and said that she was the radiographer and explained what was about to happen then the assistant helped me from the wheelchair onto the bed and covered me over with the blankets to keep me warm, I managed to explain to her that I might have trouble laying on my back because I would probably start coughing again, she smiled and said that I should try my best to keep still but that if I had a problem I should raise my arm and she would push the button to make the table slide out of the scanner.

The radiographer said that the table would slide my head and shoulders into the centre of the doughnut and then the machine would start and would continue for about 15 minutes, as my head passed into the machine I had this uncontrollable feeling of drowning and as I couldn’t sit up I panicked and raised my arm waving it agitatedly, almost immediately the sliding table reversed and just as my head cleared the outer edge I quickly sat up and coughed violently, the assistant rushed forward with the vomit bowl and paper towels but after a while the urge to cough subsided and I was once again set in motion into the scanner.

I don’t think that unless you have had an CT scan that you can appreciate the proximity and level of noise of the scanner as it does it’s work, a rotating loud hum is not nearly a close enough description.

However by swallowing frequently I managed to stay still enough for the scan to proceed and after the allotted time the radiographer said thankyou from behind the green glass window and the table slid out of the scanner, I was helped into the wheelchair. The assistant duly wrapped me in the blankets and perched the vomit bowl on my lap she then wheeled me out of the room and once again parked against the wall, I was starting to feel chilled and was very pleased to see the porter coming along the corridor towards me to take me back to the ward.

On route to the ward we past the discharge lounge and Ken was in the doorway, when he saw me he smiled and did a thumbs up sign but I knew things were not going well and gave him a thumbs down sign back, his smile changed to a quizzical expression but the porter kept going so there was no time to stop and say what had been going on.

It must have been lunch time when I got back to the ward as Helen was already there waiting for me to return, she helped me from the wheelchair back into the bedside chair and I managed to whisper to her what had occurred in the radiology department but that I still had no idea what the problem was however I remained slightly buoyed by the fact that my condition had not seemed to have declined as I thought it would if I did have the Miller Fisher Syndrome.

The food trolley went by and one of the catering staff came across and asked what I wanted to eat, Helen explained that I couldn’t swallow at the moment and they said they were surprised that the nursing staff hadn’t put a NIL BY MOUTH notice over the bed.

Helen spent a good part of an hour with me and just before she was about to leave a nurse came over and said that I was going to be sent to the Ear Nose & Throat department after lunch to try to see why I continued to cough so much, Helen was pleased that things were happening towards finding the diagnosis and seemed a bit happier as she left to go back to work.

About 2.00pm another porter arrived with a wheelchair and after repeating the transfer from the bed side chair complete with blankets and vomit bowl we headed off to the ENT department.

This time I was parked in the waiting area with other patients and my notes were handed over as before, however you feel a bit exposed sat there in a bed gown and blankets when everyone else is in their normal day clothes but I didn’t have to wait long as I was called as soon as the examination room became free but as with the earlier A&E department experience I felt a certain resentment aimed at the queue jumper from those who had been waiting for some time.

I was wheeled into a small room, the normal examination chair had been moved to one side and the wheelchair was positioned next to the desk.  I really couldn’t be sure where the consultant hailed from but in a broad possibly Asian accent he checked my name and wrist band and asked me what the problem was which surprised me as I assumed it must have been written in the notes, however I managed to whisper to him the series of events up to now and after having to repeat a couple of responses he said OK and said that he wanted to have a look down my throat.

First he put on a head light and asked me to open my mouth wide, he immediately noted that my tongue was not straight, he then tried to press down on my tongue with a spatula which was definitely a wrong move as it caused an involuntary retching movement, my head flew forward at speed, my forehead collided with the consultants head light and had he not moved out of the way as quickly I’m sure that I would have swallowed the spatula and half his forearm.

He called for a nurse who on entering the room saw the mayhem and immediately went to the dispenser to get some paper towels to wipe me down.

The consultant went to the sink to wash his hands and after a short time I managed to stop coughing and compose myself again, he then said that he wanted to pass an endoscope up my nose and down my throat to look at my larynx.

Before putting the endoscope up my nose it would be necessary to anaesthetise the nasal cavity and with that he took a small bottle with a long thin nozzle and sprayed a liquid up both my nostrils, well as you can imagine the coughing and spluttering started all over again but luckily this time the nurse was at hand to deal with the ejected bodily fluids and the anaesthetic which tasted strongly but not unpleasantly of bananas quickly took effect and things calmed down once more.

The ENT Consultant now sat himself down in front of me, he asked me to sit back in the chair with my head back slightly and he asked the nurse to hold my head still from behind, he proceeded to coat a thin black tube with a lubricant gel and then started to push it up my left nostril as he did so he could see the progress of the tube on a computer screen over my left shoulder, I could feel the movement of the tube in my nose and throat but there was no real discomfort.

After a few ‘Mmms’ from the consultant he asked me to try to say ‘Eeeee’, then again and then again and then there was another ‘Mmm’, he said that my left larynx seemed frozen and that it was not moving to close with the right larynx and that was why I could not make the usual sounds with my vocal cords and that I was coughing all of the time because I could not close my larynx properly to prevent mucus from getting into my trachea, he then asked I wanted to have a look.

I had not looked inside my own body before and I wasn‘t sure that I wanted to now but my curiosity quickly got the better of me and I nodded, the nurse then let go of my head and the consultant moved my seat slightly so that I could see the screen – how interesting – the whole screen was a mass of different colours from pink through red to purple, in the centre of the screen was what appeared at triangular shape with a flat bottom and two sloping sides both of which were partly edged in white.