Saturday, 10 May 2014

Use Your Infusion

Since this is a memoir, and the title would suggest it is, then it's occasionally necessary to record stuff that happens to me. Even if it is not funny or even if it is, frankly, a bit gloomy.

On that basis then I have to tell you that I had another encounter with my friends in the medical profession this past Wednesday. It is well documented on these pages how much I hated hospitals, how I was absolutely convinced that doctors and specialists considered us expendable and how, therefore, it was always imperative not to go anywhere near a hospital or even a doctor, nurse, porter or hospital chef unless it was absolutely necessary. That all changed last summer when it became absolutely necessary to go to hospital, and I miraculously spent a whole three days in the care of the NHS and didn't die. Maybe they are worth listening to, I thought.

So I agreed to resume consultations on the previously taboo subject of my waning kidney function. At my first consultation with my nephrologist Mr Khalil in December last year I was advised that I would require an iron infusion. Naively I believed this to be an injection, like a flu jab or something. However, during a visit to my GP recently I was informed that it is a slightly longer process than that, more similar to my experiences of last summer when all kinds of crap was pumped into me in a bid to get my potassium levels back down from the stratosphere. That worked pretty well, eventually, so all things considered I came to the conclusion that this iron infusion malarkey might be worth a go. Except it didn't happen after my first consultation with Mr Khalil. At my second in April he told me that this was because the blood tests I'd had in December showed that my haemoglobin levels were not low enough for anyone to be bothered sending for me. He said he would look into it again after the results of my April blood tests and would organise it if necessary.

If you have been keeping up with my neurosis via these pages you will not be surprised to learn that I was suitably outraged when I received the appointment letter at the end of April. It gave me just a week's notice before the scheduled infusion. Nine days, to be precise. Normally I need at least three months to psyche myself up for a hospital visit, particularly one involving actual treatment. More than that, it brought me down and unearthed my tenuously dormant negativity. The only sensible conclusion I could draw from receiving the appointment letter was that my haemoglobin levels had dropped dramatically according to my latest blood tests. I'm not even sure what the consequences of low levels of haemoglobin are but that didn't stop me from blindly panicking for the next hour about all kinds of possibilities. At best I was going to be at the hospital for hours on end getting assaulted by nurses, and at worst I was going to be kept in for six months on some kind of high dependency ward for people with low iron levels conjured straight from my imagination. This is quite clearly madness but when you have had stage four kidney disease for the last eight years and you have watched dozens of your friends and acquaintances pass on from conditions relating to their disabilities you get a whole new perspective on your mortality. I never thought about it before, but now I think about it every day. I'm thinking about it now but we'll leave it.

Fast forward nine days. My appointment is at the Royal Liverpool hospital. According to my appointment letter no other hospital in Merseyside can offer the kind of treatment I need, which added even further to my anxiety. I woke up on Wednesday morning, May 7, in a strange old state. My mind was clear and fine. I'd had enough time to rationalise the whole thing and knew for certain that I was just going for one little injection, and then a bit of a wait while the iron dripped into me. Then I'd be on my way. Tell that to my insides. My heart was inexplicably pounding in a manner reminiscent of the palpitations I suffered last July and August and my stomach was churning. I was nervy, on edge and quite categorically out of my mind. It's a shameful carry on when you consider what other people, people I know, have to go through at hospitals. But just because there is always someone worse off than you does not mean you are in control of your anxieties.

Parking the car was almost as much of an inconvenience as the appointment itself. I pulled up at an outdoor car park and was told that there was only one space remaining and that there was no disabled parking available. I would have to drive back up the hill and go around the block to the rear of the Q Park. The same Q Park I could see in front of me barely ten yards away. Nothing is ever that simple, is it? At least I was calm by now. I crossed the street and eventually found Ward 9B. As the name suggests it is on the 9th floor. The lifts are not easy to get into because they're not that big and everyone wants to use them at the same time. When I reached 9B I was struck by the smell. I don't know what it was but it smelled like death. Yet more unnerving was the fact that I had to pass some very ill people hooked up to all manner of machinery to get to the ward reception and introduce myself. I was sent to wait in a very modest waiting area with blue chairs. Everything is blue in 9B from the chairs to the signposting to the mood of the patients, myself included. Sitting opposite me a woman was waffling inanely into her mobile phone despite several signs requesting that you turn your mobile phone off while on the ward. The worst waiting area I have ever seen is topped off by the fact that nurses and cleaners wander back and forth around you completing their important but unsightly daily tasks. There's no segregation between you, the day patient, and the bleak realities of a nephrology ward.

When visiting the bathroom another awful memory was brought back in quite revolting circumstances. When I was first diagnosed with kidney disease they made me carry out this test in which I had to collect all of the urine I passed for a 24 hour period. This involved lugging a huge bottle around with me on my daily business, half-filled with my liquid waste. As I lock the door of the disabled toilet on 9B I notice that someone else has been asked to perform the same test. Except they have managed to leave their half-filled bottle on the toilet floor. Discarded. If they were not going to keep their sample to submit it could they not have at least poured it down the toilet? It was only two feet to the left of them, after all?

Fortunately I was not left to wait too long. Within five minutes or so I was called in by a very happy, smiley, enthusiastic nurse to a small room at the back of the ward. Her name was Fran and she asked me to transfer from my chair on to a recliner. I just about managed this but only because the arms on the recliner could be moved. Had they been fixed it would have been impossible. Quite how anyone with even greater mobility problems than me is expected to do this I don't know. It was quite a relaxing recliner though, I'll say that. Had I not been about to be prodded and poked and injected with all kinds I could easily have fallen asleep there. Fran and I had the inevitable conversation about my work, which was always going to happen given the nature of it. Pity I'm not allowed to tell you about it except to say that I'm CIA and what you are reading is classified. There were two other patients in the room having the same treatment, a stark reminder of how bleak the future might be. Mary, to my left, was positively yellow and although seemingly in good spirits, looked very poorly indeed. The man to my right looked even closer to the end, but he must have been somewhere in his mid 80's. He'd gone past yellow and was fast approaching green. It didn't stop him from shamelessly flirting with the nurses. Whatever gets you through it, I guess. Fran fiddled around pointlessly for a while but she managed to find a suitable vein first time around which at least spared me from the kind of butchering I received at Whiston last year. After that, all that was left to do was have my blood pressure checked regularly by a slightly more intimidating nurse. She thought that she knew me from somewhere, that my name was familiar. I hoped not but then as any wheelchair user knows, unwanted local celebrity is a symptom of your condition.

My blood pressure was too high again, so the nurse in charge came to speak to me about going along to a chemist to get it checked again in a few weeks. She advised me to speak to my GP if it remains high. 'A stitch in time' she said, adding that high blood pressure is one of the biggest causes of kidney deterioration. I lied and told her that I would do as she asked, but really all I wanted to do was get back in the car and drive home. At the end of the treatment I had to wait another 10 minutes to see if I had any reaction or allergy to it. Reassuringly, Fran told me that if a reaction is going to happen it would happen quickly so 10 minutes of hanging around would be more than enough. With no reaction forthcoming I thanked everyone for their help and left hastily. A member of hospital staff ushered me into a lift which was only supposed to be used for patients being transferred in their beds. He then got out of the lift leaving me to explain to several people why I was in the wrong lift. Fortunately nobody seemed to mind too much. Before I could escape to the street though there was one more reminder of the horror of hospitals as an elderly lady in a bed was pushed into the lift, looking like she might expire before the start of Eggheads. I sincerely hoped not.

Most people only require this treatment once so hopefully this particular process is not one that will be repeated. But on the way home I refuse to look that far ahead, thinking only of the fact that it is 30 days to my holiday in New York and that, all things being equal, I will not be summoned to a hospital appointment between now and then.

Some hope.

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