A DEATH TO DIE FOR (2 page)

On Sunday morning Helen came down stairs about 7.30am, by now my voice was nothing more that a rasping whisper and I was starting to lose feeling in my right arm. We decided that I could not wait to see my own doctor on Monday and after getting ourselves ready, with Helen helping me get into the full winter attire as before. She let Jim know where we were going and we then set off back to the NHS Direct surgery in Herefordshire, I was now feeling quite bilious from not eating so Helen gave me a bowl to carry on my lap in case the car journey made me feel sick.

After another seemingly interminably long wait I was finally called to see the Doctor, a different one this time I think probably of Middle Eastern extraction and through my incessant coughing and with a roupy voice I had to again try to communicate the history of my symptoms which proved to be difficult with my poor voice and the fact that English was not this doctors first language.

However things must have looked somewhat different today or this doctor was more experienced than the first one because during the physical examination he demonstrated to me that he wanted me to put out my tongue and as I did so his eyes noticeable widened until the whites looked completely round in their sockets as unknowingly to me my tongue had evidently corkscrewed to the left owing to the fact that the whole left side had become atrophied.

He became unsure, almost agitated about what to do next, he told me to sit in the chair and then he went to the door to the waiting room and opened it, Helen who had been waiting close by because she was expecting me to come out of the door must have looked up or stood up when he opened the door, the doctor called her over to the office and they both came in and stood by the chair.

He told Helen that she must take me immediately to the A&E department of Hereford hospital which in fact was only a short distance away, if I hadn’t felt so rough we could have easily walked it, but Helen and I were now becoming quite worried because the doctor had not made it clear why he felt that we needed to go to A&E so collecting together my hat, winter coat, gloves and scarf, tissue box and now NHS issue cardboard spit bowl we walked pretty much in silence to the car and drove to the A&E department.

We soon arrived at the A&E department, Helen phoned Jim to let him know that we would not be home anytime soon and that in the meantime he should get himself something to eat. We then had to wait in a queue at the reception desk to check in.

As my voice was now so quiet and the coughing so relentless, Helen gave the requested information for me and we were told to take a seat, there were several people who were waiting before us but alarm bells must have rung behind the scenes because unexpectedly within a few minutes we were called forward to a cubicle, you could almost feel the daggers between the shoulder blades as we got up and followed the nurse.

I was told to take off my winter outer clothing and sit on the trolley bed, Helen helped me out of my coat as by now my left arm was quite weak which in itself made me think something was definitely not right.

After a short while a junior doctor came to examine me, he said that he needed to take my blood pressure and asked if I was on any medication, I explained with Helen’s help that I was on some tablets for blood pressure but that it was generally under control at the moment.

The duty Consultant then arrived and again with Helen’s help we went through the history of events and symptoms up until now, he checked my eyes with his pocket torch, asked me to stick my tongue out and then asked me to first grip his hand with my left hand and then try to push his hand away with my left arm, both of which proved very difficult.

He then stated that he would get the junior doctor to take some blood and would come back in a while to check on me again.

The junior doctor reappeared and much to my surprise started to insert a cannula into the back of my hand, he explained that he might need to take more than one set of bloods and indeed he did seem to take an armful.

After about half an hour the consultant came back and said that he was concerned that I might have a rare form of Guillain-Barré Syndrome (
GBS
) known as Miller Fisher Syndrome which unlike GBS affected the body from the top down rather than the bottom up, he said that although it was rare he had in fact had to deal with a women with this condition in the past few weeks and therefore was pretty confident that his diagnosis was correct.

As he started to explain the symptoms Helen looked at me worriedly and said that’s what Alan(B) had, I began to worry because only about a year previously a very good friend of mine had been laid up in hospital with GBS and his wife had said that I should make a visit because the prognosis was not good, I remembered the visit very well, Alan was laid in bed unable to move, his breathing was assisted by a ventilator with food and fluids being given using a nasogastric tube, at that time the hospital were saying that even if he survived it could take up two years at least to get back to health but also, more worryingly  that he might be permanently disabled.

On reflection I can see why the specialist thought that he might be on the right track particularly when you read the symptoms.

‘Unlike GBS, MFS causes descending paralysis, i.e. paralysis that begins in the upper body and gradually spreads downward, damage to cranial nerves weakens the eye-muscles, causing double-vision. It also weakens the facial muscles, causing facial sagging and sometimes making speech unintelligible’.

Alarm bells started to ring in my head and all sorts of thoughts quickly flooded in, how were Helen, Jim and I going to cope with this, what was going to happen to our home if I could not keep working…………what if I didn’t make it. All this time my body had been racked with seemingly non stop coughing, so much so that my chest and back muscles had started to ache although this might have been another symptom of the illness.

My head started to spin as the consultant finished his explanation of the progression of the illness Helen, caught hold of my left arm and I leant my head into her side and she put her arm around my shoulder, here I was able at least to glean some warmth and comfort in my imploding world.

The consultant said that it was important that I was admitted straight away for observation and treatment, he arranged for a porter to come with a wheelchair and take me up to the admissions ward and said that he would see me there.

With Helen holding my hand, the porter wheeled me into the lift and we went to the first floor, as we approached the admissions ward I noticed that the consultant had already arrived. He had his back to me and was having a heated discussion with some of the staff at the nurses station, as we got close his voice started to rise and he said words to the effect that if they couldn’t get hold of a spirometer to keep a check on this man’s breathing that he could die tonight, Helen gripped my hand tightly.

The words had just left his lips when one of the nurses noticed our approach, her eyes widened and her mouth dropped open, she grabbed the consultant’s arm and nodded in my direction, the consultant spun on his heel and looked straight at me and you could tell from his expression that I was the last person who should have heard his outburst.

His complexion was ashen as he turned back to the others, and with head bent and in a low voice so that I could barely hear he continued to urge them to locate a spirometer.

We carried on into the admissions ward and as I still had my normal clothing on I was asked to sit in the chair next to one of the beds, it was a typical green faux leather high backed hospital chair with wooden arms but just to be able to sit and lean back and close my eyes for a second was a great relief and gave me a chance to gather my thoughts.

I was quickly brought back to the here and now when Helen asked if I was feeling cold because although I am sure the hospital was warm, just the sheer exhaustion of recent events had caused me to start shivering, she took the blanket from the bed, one of those that looks like an oversize string vest and folded it in half, she asked me to lean forward and placed it across my back and over my shoulders and I slumped back into the chair.

Helen sat on the edge of the bed next to the chair and we held hands, her face told of the anguish she was going through, I could tell that she was upset both from the diagnosis and the suffering I was going through at that moment, she was near to tears but not wishing to transfer her own fears to me she held them back and managed a smile, her smile always comforts me.

It was now about 3.30pm, I was in the admissions ward and had been given my first wrist band with my name etc. on and as it looked as though I was going to be in hospital for some time I agreed with Helen that because we had been on the go since early morning she should go home and get herself something to eat. While there she could also let the family  know what was happening and then put a few things of mine into a bag and come back to the hospital later, so kissing me on the forehead we said our goodbyes and she left.

Almost straight away the consultant came and sat on the edge of the bed, he put his hand on my arm and said that he was sorry that I had heard his comments outside, however he could assure me that I was not going to die tonight, he continued that they had been unable to find the portable spirometer because it was thought that someone had removed it from the department for a home visit and not brought it back and the only other unit was locked in the Respiratory Medicine Department however they were trying to locate a key and if all else failed they would get maintenance to break the lock.

By the time Helen got back to the hospital around 6.30pm they had managed by fair means or foul to obtain a large trolley mounted spirometer and as she walked into the ward she could see that the nurse was using the machine to take the first assessment of my lung capacity, for anyone who has never had to do this you have to put a piece of cardboard tube about the size of a toilet roll liner into your mouth and try to exhale air from the lungs for as long as possible to the constant refrain of “keep going” “keep going” “keep going” from the operator while they watch the paper read out, however with my constant niggling cough this was proving quite a task.

The senior nurse then arrived at my bedside with ten small glass jars which she placed on the over bed table at the bottom of the bed, she said that the consultant had prescribed that I should have an intravenous preparation called Venoglobulin, I asked what it was and she showed me the label on one of the bottles on which I read……

‘IGIV (human) products have been linked to renal dysfunction, acute renal failure (ARF), osmotic nephritis, and death. Patients predisposed to ARF include those with pre-existing renal insufficiency, diabetes mellitus, age older than 65, volume depletion, sepsis, or paraproteinemia and those receiving known nephrotoxic drugs. In these patients, give drug at minimum rate of infusion feasible. IGIV products containing sucrose accounted for disproportionate share of renal dysfunction and acute renal failure report’s…….

She also told me that it was made from human plasma derived from multiple blood donors and pooled together and that it probably came from American servicemen.

I didn’t know what to say, I certainly wasn’t sure that I wanted this stuff in me but when you have been told that you have a degenerative illness like GBS which can be fatal you put your trust in the specialists, she went off to get a wheeled IV stand and infusion pump.

Helen brought up a chair from another bedside and put it in front of mine, we sat looking at each other and holding hands for a few moments without saying anything, her look was almost quizzical as much as to say what happens next but I had no thoughts in my head that wanted to coalesce into a coherent answer and my cough had not subsided in any way.

After a short while she released her hands and reached down for the bag of items she had brought back with her and showed me its contents, there was my wash kit, slippers, the current book I was reading, I think it was a Rebus story and my mobile phone and charger. I don’t use pyjamas at home but I have a couple of nightshirts which I keep for cold winter nights and she had also brought these along.

When the senior nurse returned with the equipment and a hospital gown she asked me if I could get undressed and into the gown as she wanted to connect me up to the IV drip as soon as possible, Helen moved her chair out of the way and then pulled the curtains around the bed and with her assistance I managed to get the gown on.

The senior nurse then brought the over bed table around to the side of the bed and placed one of the pillows on it, she said that it would be more comfortable for me if the arm was kept horizontal while the infusion pump was working, she then connected a line into the cannula in the back of my left hand, the other end of which was connected to the IVIG and switched on the infusion pump.