chapter 6 and 7

fenaltellsmethishurts


dog***12345

r2345twice

ord&re$$

CHAPTER FOUR: HEY LOOK NO KIDNEYS!

I was eventually discharged from hospital and got back to my new room in the shared house. I had to unpack. I moved there only a few days before my operation but two months later I could begin to live there and meet all my housemates. I must have become the mystery person who moved in and cleared off. They probably thought I had died in hospital. I also had to start the Law Society Finals course several weeks late and catch-up on all the lectures I’d missed.

My first real task was to get to the Poly and collect my grant cheque for the autumn term. I ventured to an unknown corner of the Poly site for the first time, the administration block and was told that because of my delay in picking it up they had sent it back to the local education authority. I had no money, I had to borrow a fiver off one of the law lecturers that day to be able to eat as I had stupidly assumed I would get my grant cheque to the bank and be allowed to draw out cash. By the time I realised that this was unlikely the bank had closed. I was not even able to ask for an overdraft facility.

It slowly dawned on me that with this new problem, the lost time, the continual catching up necessary after every dialysis session and my general health, I might have to leave the course. These problems may have been surmountable while doing a degree but not on this intensive postgraduate course. On the other hand I would not have the distraction of partying and socialising. I was sceptical from the start about getting through the course but was persuaded to have a go. However I could possibly take it the following year, you never know, I may get lucky and have had a transplant.

I ended up signing on and getting into a routine of going into hospital first thing in the morning for my three days. My dialysis sessions were initially for three five hours, I was picked up from home by an ambulance or other hospital owned vehicle and occasionally by an expensive private taxi during a shortage of such vehicles.  Usually an ambulance would pick me up, I would get a breakfast at the start of my shift, stay on the machine for five hours and then an ambulance would drop me off at my home. Sometimes I’d have to wait an hour or so for one to become available.

At the unit at the same time there was a young girl of about sixteen who dreaded the needles. It was dramatic for the whole unit. It would take two or three nurses to persuade her to allow them to put the needles in so that she could start her session. Her screaming and fighting was distressing for all concerned and some days were worse than others. The nurses tried hard to make her life less upsetting. Once she was thrilled to be phoned up by a Saturday national TV children’s programme and on her birthday she arrived to banners emblazoned upon the unit’s walls and hanging from the ceiling wishing her a “Happy Birthday!”.

Occasionally I was asked if I would mind if nurses, learning the ropes, could put my needles in. They said I had “good veins”. The word good when describing any part of my body was enough for me to say yes. I would always agree, not only so that I could do something useful, but to avoid a non-expert putting this young girl’s needles in. They could train on me as I had my thumb and fingernail on standby if they really made a mess of it. 

I was also on dialysis on my birthday and was hoping no one would notice. This was tricky with so many pieces of paper around with my date of birth on. If anyone discovered it was I’m afraid I would have said something downbeat like “big deal the earth’s gone round the sun again.” I am not usually a miserably bugger but the one thing that riles me is enforced cheerfulness.

A few months later I was moved onto the late evening/ night shift for eight hours twice a week on Tuesdays and Thursdays. I would make my own way in for about 6.00 pm which meant you had to get there well in advance. As time went on I went in earlier and earlier to start early so I could finish early, a practice other patients had tried but eventually the nurses dissuaded us.

When I arrived I would look around eagerly to see which bay I was in because not all had televisions (black and white in those days.)

This was quickly discovered by looking on each of the beds, all covered with the usual accoutrements, for my name knowing that was where I was to spend the next ten hours, hopefully with a working telly. A faulty one, which would constantly play up, was in a sense worse than none as you could not easily resign your self to not having one and would be trying to get the nurses to get it to work.

Once on the machine you could have your meal, if taken in the first hour of an eight hours shift you could breach your strict diet. It was not that beneficial health wise because a lot of the goodness would be dialysised straight out but it gave you an escape from the strict diet twice a week. I would be given the option of tomato or mushroom soup from a can. Some patients would bring in all the goodies they could never have apart from those two hours each week, which I noticed were usually crisps or chocolate. I did not bother because I saw it as teasing yourself. You might as well accept the diet and take the goodies the hospital gave you at meal time rather than work yourself up into a frenzy by purchasing things in advance to bring in and eat in that first hour whether you wanted it or not. It was a bit like removing a prisoner from his/her cell and putting him/her in a field for ten minutes, allowed to run around like a sprightly young foal only to be stuck back indoors just by the time you fully remembered what you are missing.

Throughout the session your fistula arm remained outstretched, otherwise the blood flow would be restricted if you bent your elbow and then the alarm would go off. This occasionally happened if you moved then one of the needles in your arm twisted and was up against the inside wall of your veins or worse the needle came out and you had your very own blood fountain, particularly impressive because you had arterial blood flow, nearly hitting the ceiling. It never happened to me but I have seen the results of it happening to others.

In those days there were no zappers with each TV set, you had to ask a passing nurse to switch channels. As time went on I got more adventurous and a bit naughty. I would slowly get up, wait to see if I was not about to go hypo (faint due to low blood pressure), if not rearrange my leads, carefully watching my needles so that they would not move inside my fistula and set off the alarm. If they did I would feel like an escaping Colditz inmate but unable to put my hands up once the nurses arrived to see what was up. If I managed to avoid that I would then edge over to the TV located on a high shelf and try to hit the channel change button. This would usually work fine but sometimes I could not reach. I would occasionally coax a nurse to pass me a window pole so I could change channels from a lying position. A sort of cave man zapper.

I had a copy of the Scrabble board game. I persuaded the patient in the next dialysis bay to play if I could arrange it. The problem was getting us either side of a table. A nurse said she would help us manoeuvre out into the centre of the unit by moving our machines and leads. It felt like bribing a friendly prison warden.

The game was set up. I went first and placed my word. My fellow patient then moved. At first I could not work out what his word was. Oh no I have not just gone and challenged a bloody intellectual. What was it? Latin is not allowed in the rules, surely not. Then realised he was placing the letters of the word backwards up the board. No! He does not know how to play! After all the effort and bribes to get this far I could not very well ask the nurse to move me back and had to go through the charade of playing when all I would be doing would be teaching, therefore not much fun.

After each evening session I had the choice of sleeping over or going home. I preferred to cycle home and sleep in my own bed rather than sleep at the hospital and getting up at 7.00 am so that the day dialysis patient could get stuck into some top-notch dialysising. 

I was now dialysing myself from beginning to end: set the machine up (about 40 minutes), weigh myself, take my blood pressure, record all, open up new, well packaged, disposable lines and needles, inject the heparin, the anti clotting agent and, beforehand, the local anaesthetic for the dialysing needles if you were a big softy like me. You are advised to use different entry sites to help enlarge the fistula, which results in several small scabs, so when inserting the needle there is less pain whenever endings are killed off. Then you do not even bother with the local. Then you either sit on the chair or lay on the bed for the next eight hours, or more if you were above your normal weight due to drinking too much since your last session.

As an inpatient I would get many visitors. However as a dialysising out patient attending practically every other day, visits fell dramatically away. I often hinted that someone during, say, a boring Tuesday night might want to come to the hospital and have a game of chess ..or ten but very rarely was the offer taken up. One excuse was the dislike of hospitals, especially the smell. Well join the club. I will never forget those who did visit, especially if I did not know them very well, but will try and forget those who I know better who never did.

One nurse had an unfortunate idiosyncrasy when talking about some patients. I once asked her where one particular patient was who I spoke to from time to time. I had not seen her for sometime and I thought she had got a transplant or began home dialysis. The nurse started giggling and her colleague explained to me that the patient had died and also tried to explain her colleague’s strange response when reacting to stressful news.

A Guardian newspaper article:

“When the news cameras have left and a close-up of the kidney machine has been edited for the recent topical news story the patients have to continue with their long session on that dialysis machine.  And the general public move on to considering another sympathetic story about people that can no longer take their health for granted. These patients dwell and dream on the fact that they may be on that machine for many years to come.”

I came across a four-month project by a photographer named Gina Glover considering how the patients and staff at a dialysis unit coped.  She came away clearly educated about the atmosphere within the unit and said such things as "the people in this situation are almost universally brave, courageous, patient, and, in contemplating their individual features, enjoying the philosophical" as far as the staff were concerned she mentioned: "stamina, patience, sense of humour, and understanding of each patient" and pointed out that with all the slagging off that the NHS gets she sees the staffs efficiency and dedication.  She did mention however that when she came to one patient she told her to bog off which I can fully understand”

Coming off and cleaning up afterwards is not straightforward. You do not take the needles out fold your arm and five seconds later put a nice little plaster on, get up and walk out saying: “See you next Tuesday” You’re completely drained. In fact you always feel worse afterwards than you did before, the opposite of what other people imagine. You now have to take the last needle out only after the last few red cells of your precious blood go back into you with the extra saline, take the needle out and hold it there for several minutes or put a big clamp on, make sure you do not knock it while you continue with your chores still feeling a bit strange and sometimes light headed as a result of the session. The blood takes much longer to clot because of the heparin that enables your blood to go in and out of body for hours. This is why it is turned off an hour before you come off the machine.

Then you have to take the artificial kidney into a back room and flush it through continually for about 40 minutes, as I recall. Meanwhile you go back to tidy up your cubicle, throwing away all the lines as they are only used once

Then and only then can you go home or go to sleep in your cubicle drawing the screens listening to the evenings session slowly ending as you dose off.

“ Michael. It’s time to get up. We need your dialysis bay for the day patients. They will be arriving soon and we need to get it all ready” I would then cycle home; luckily most of it was down hill, which was about three miles. And I would usually get in between 1.30 and 2.30 am and be able to listen to the 3am BBC World Service.

Cycling was my usual mode of transport. It was mostly up hill. I would have to force myself to cycle to the next lamppost and then award myself with being allowed to get off and push the bike up the rest of the hill. Once getting off the bike, I had to get my breath back, look down at the bike pretending there was something wrong with it because of the indignity of passers by thinking what an unfit young bloke I was.

One time I had to go through a picket line NUPE (National Union of Public Employees), as they then were, now part of UNISON. I cycled in and was ready to explain why I had to go through thinking about what an interesting conversation I was about to have and they just let me in.

I would occasionally walk to the unit, passing people coming back from work, I distinctly remember one occasion when a family had not drawn their curtains, the lights were on and they all had their meals on their laps as they all watched the telly. They were so engrossed they were not even looking at what they were eating, apart from that millisecond when it was time for the next fork stab. I remember thinking how they had no idea that some of us could not eat what they had on their plate as it could possibly kill us.

One day I was late for my dialysis and had to get a taxi, which I couldn’t really afford. I told the driver I needed to go to the hospital and he said “nothing serious I hope.” I told him the reason for my journey and you’ll never guess what he said, “I ‘d rather be dead than be on a kidney machine”.

I think it is called a sepulchral silence: that atmosphere inside a church. He probably thought it was the most philosophical thing he had said all day. Apart from “where to mate?” I just stared ahead at the dashboard. I am not usually stumped for an answer in a situation like that but that comment did stop me in my tracks. Part of me wanted to do my usually “I think you’ll find your brain already is mate” and get out but I just sat there and said nothing thinking how insensitive he was. To give him the benefit of the doubt he was just ignorant of my plight and was trying to make a conversation. I was not upset: I had long passed that stage. Why is it though, that when you want to feel and be sick you can’t be? I could then have accidentally turned away from the window and after the slight mishap say, “I ‘d rather be signing on than be a taxi driver and have a passenger throw up all over my lap”

As I got out of his taxi on arrival at the hospital I avoided his gaze in case I saw pity within it and was thinking of giving him a tip - do not consider any volunteering for the Samaritans. (“You wouldn’t guess who I had in the back of my taxi yesterday: this ill looking young bloke. Amazing. He was on a kidney machine and wanted to stay alive”). That’s the last time I will be using Troglodyte Taxis. I suppose the name gave it away a little.

So what is the fashionable dialysis patient consuming this season?

*******************

“Excuse me my good fellow but by chance on my mid day perambulation in this fair city I smelt the consequence of your produce where upon I could not help but notice above this fine culinary establishment your sign. Are you able to furnish me post haste with some fish and chips?”

“Are you awright mate?”

“I am fine.”

“Good for a moment I thought there was something wrong with you.”

“No. May I request that you boil the potatoes that you intend to use for this feast in twice the amount of water usually required for the said root vegetable, then to guarantee you will then pour the resulting liquid away and thereby make the chips with what remains.”

“You want some chips?”

“Yes kind sir. Yesterday I had a refreshing and invigorating 8 hour dialysis session but before embarking on my weekly purchases and so replenish my bare larder I require some nourishment.”

“Sorry mate I do not know what you are on about. Do you want some chips or what?”

“Yes sir.”

“Right. Small or large?”

“Small sir if they could comply with my earlier instructions thus eradicating the high potassium content thereof.”

“Sorry mate we do not do potassium chips, just normal.”

“That my good sir is my problem. I cannot consume chips as advised by my physician without first following the instructions I have hitherto expressed.”

“Look mate let’s get this straight: are you asking me to waste 40 minutes boiling your poxy small portion of chips before I fry ‘em?”

“Yes sir”

“No sorry too busy and anyway they ‘d be nothing left but mush.”

“That is where your skill is required.”

“No, sorry. Chips, small portion, fried in normal way. Take it or leave it.”

“What about the fish.”

“Yeah what about it.”

“Well could you be so kind as to sell me three ounces of fish.”

“LOOK. Are you taking the piss or what? We don’t sell fish by the frigging ounce. Now what do you want cod or plaice.”

“Either but only 3 ounces.”

“Look I’ll give you a bunch of fives soon. Sod your three ounces and your ultra boiled chips. Now get lost and do not come back.”

“Good day sir.”

*********************

During one car journey we were looking for food in the middle of the countryside but all we found open was a fish and chip shop. I had to sit there as the rest of the hungry car occupants stuffed their face re-offering me chips time and time again not fathoming out why I couldn’t eat them even though I had tried to explain many times.

Put that down. You are coming shopping with me .You can carry the basket. Right.         Let’s see what the fashionable kidney patient is eating this season.

Frozen section. Grab the milk and that double cream not the single cream the double. Now ignore all the cheese apart from the Caerphilly as it is low sodium cottage cheese. Yoghurt no. Deserts no because no idea of potassium contents on ingredient list on outside

Pork chops. A pack of two will supply several exciting meals.  2oz per meal.

Fresh fruit. Apples (not that many. Can only realistically have one a day). Put the bananas back. Are you trying to kill me?

Vegetables. Carrots, cauliflower and cabbage. Potatoes. Yes but the preparation involved is hardly worth the effort.

Bread. yes but make sure does not contain anything extra like dried fruit.

Rice as long as none of those instant types or those with sauces or seasoning

Eggs. Hey let’s be sparing with this one.

Spreads. You can forget about savouries like marmite, Bovril but sweet jams are OK.

Biscuits. As long as no chocolate or dried fruit bits in it. Only one packet as it will count towards my vegetable units.

Non-salted crackers OK

Sweets. Boiled ones fine, but no fruit gums or liquorice

Drinks. Diluted squash, barley cup is fine but do not forget I can hardly drink. No ban on alcohol like lager but for half pint a day is hardly worth it. But never ever strong ale, stout or cider.

Cereals. Basic ones are OK but nothing with extras or high bran contents or muesli.

Tinned food. No tinned vegetables or corned beef. Fruit .a possibility depending on the fruit. Get the tinned pears and fruit salad ones.

Jars/bottles of sauces. Big no no.

If you do not get it right you can end up with the threat of malnutrition. The tendency for depressed people is to eat more as a comforter. I ended up not eating much and even eating under my diet until I was told that could be worse than going over as your body would break down itself and large quantities of potassium would get into my bloodstream.

I heard of a potassium suicide. An elderly man had given up. He could not take the dialysis machine anymore. He went home and consumed large quantities of coffee and chocolate.

It was possible to bake your own bread with flour devoid of protein, so you could eat as much as you liked but I couldn't see the point because over a period of time on such a diet your stomach shrank. I didn't want to encourage it to crave food by eating a lot of food one day and not the next. It was after all bulk food to fill you up. “Dialysis bread: with nowt ever in.”  

Quite often people simply didn't believe that I had no kidneys. A typical exchange would go like this:

“Would you like a drink?”

“No I cannot drink any more thanks.”

“Then have a soft drink” 

“Well I cannot drink anything. You see I do not have any kidneys and can only drink very little each day”

“No kidneys. What do you mean you have not got any kidneys”

“Just that. I had both removed. I am on a kidney machine. I had to have them removed, as they were too large. Otherwise I could never be considered for a transplant in the future”

“Gosh. But I did not know you could survive without kidneys .I have heard you can survive with one.”

“Yes that is true. People live with one kidney without any problems”

“How can you live with no kidneys”

“Well you go on a kidney machine”

“But you cannot have no kidneys. How do you pee”

“You don't”

“Come on. So how do get rid of the urine”

“You don’t make urine”

“So where does all the fluid go”

“ It ‘s taken off while you are on the machine that's why I can't have very much to drink .If I did I could have a brain haemorrhage.”

“Your not winding me up are you?”

“No”

If I got really infuriated I’d get them to feel my pounding fistula. Then they could not believe there was anything in there but blood flow.

I even had one of these typical conversations with a qualified nurse whom I had met socially. You will be relieved to learn that she was not a renal nurse or working at the same hospital. She just refused to believe me. She understood the need for a fistula but not the absence of kidneys. I felt her looking at me thinking I was a sad bullshiter. Then she walked away.

Once when I was confronted with another non-believer I turned to my friend for back up and said: “If we added up the number of kidneys we have between us how many would that be”, he said “three.” The non-believer huffed and walked away. I then asked my friend how many kidneys he had and tried yet again to explain to him I had a deficiency in the kidney department to the tune of two. He knew I was on a kidney machine but had not yet grasped the fact that I had no kidneys.

I went to meet some friends in a pub and just sat with them and after about 20 minutes the landlady came to the table and began to empty and clean the ashtrays and said to me,

“I noticed you been here for some time and you still haven't bought a drink. Can you now get a drink or I will have to ask you to leave.”

I took a deep breath and said, “I cannot drink anymore today. You see I have no kidneys” and she said,

“Yeah and my name is Napoleon. Now get out”.

So I left her pub leaving her to complete her plans for her advance on Moscow, once she had finished cleaning the ashtrays. I was hoping that the people I were with would show some solidarity but they probably weren't sure whether I was telling the truth themselves so I walked back home.

Walking around on level ground was OK. It was the hills that did me in. It was worse if there were people around, as you did not want to draw attention to yourself. I would need several rests walking up a steep hill. If it was a busy street you could stop and pretend you were looking in a shop window until you realised you were staring at a window full of women’s under garments. You would also be breathing heavily and would now really be drawing attention to yourself so the only option was to plod on until you found an acceptable shop window to feign interest in.

On one of my many aimless walks into town I decided to treat myself. Most people do not think twice about popping into a café for a break or a breather if they are in town. They’ll buy a drink, possible even a nice piece of cake without much thought. They are probably not in the least bit thirsty or hungry but cannot very well use the café as a resting place without buying something. If you are a dialysis patient, however, it is not as simple as that. Whatever you are about to drink or eat, assuming you find something you can eat on the menu, becomes part of your daily diet. You always have to bear in mind that anything you have now means there is less left for the remainder of the day.

Anyway I went into a cafe and decided to buy something to “eat out”, which would mean someone else would have to cook for me. It would not be much but apart from dialysis food at the hospital you have to cook everything yourself. Otherwise you were never able to control what was in the ingredients, such as potassium contents. I studied the menu and deduced that my choice would be egg on toast. I  took a seat by the window to watch people walking past in the street out side. Behind me I could hear snippets of the queries from the newly arriving customers. “Do you do olives with your piece of pizza? Oh you don’t. Oh in that case I’ll have something else then. Now what shall I have?”

When my snack arrived with my small cup of tea brought to my table by the woman who ran the café she said apologetically “sorry I broke the egg so I gave you a second one”, glancing at me for a possible thank you but from the look on her face I may not have portrayed the expected look of appreciation back and may have grunted something as a substitute.

I then spent the next 15 minutes or so trying to enjoy the novelty while all the time the second egg stared up at me with its wide innocent yellow eye. Of course I could have eaten it but two eggs (with my diet!) come on! It would have meant reducing my meal meat units that evening or going over my diet limit that day which was a habit I was trying to avoid so I left it on the plate. The cafe owner returned to collect my plate and giving me a quick derisory look as she spotted the non-empty plate, while I finished off my now cold tea and left, not bothering to try and explain.

I had by now, given up trying to explain. It was something no one would immediately accept without me having to go through a full explanation not knowing at the end if they were convinced. So many people making instant judgements because they did not care to stop and consider that I may be telling the truth. Immediate knee jerk responses. I wonder if Gelert would have agreed with me.

          I remember two occasions when I needed or thought I needed to go to the loo for a pee. But this was illogical. So convinced was I that I went and nothing happened which my brain was trying to tell me al along but my body was giving a contrary view. Once I realised I was wasting my time I could not get rid of the feeling. In fact the futile attempt had made it worse and it took a long time trying a few mind diversion techniques to slowly take my mind off the urge and rid the feeling away.

        Getting support was always a tricky one: I did not want to tell my family and upset my mum and I had learnt not to fish for it with people I knew as they or I could not win. they did not know what to say and what was usually said would ether be something which would indicate lack of understanding of the situation (is you other kidney working OK then?) or a lack of interest or an allegation of moaning. The best place you would have thought would be the unit which indeed it was but once there you would look around at all the other patients and realise they were in far worse situation and it felt totally out of order to raise the matter.

**

Rather than just sign on I looked for voluntary work with a legal slant which might help me in the future. I may as well use the limited amount of legal knowledge I had and see if I could or would want to use it in the real world away which is a far cry from the academic one I had so far only experienced. I spent some time volunteering at the local law centre, which occasionally involved going off to the university to do research, as their library was more extensive.

During the day I would sleep a lot. Walking into town left me feeling slightly alienated. I would notice groups of people in pubs sitting with their pints at the tables where the empty glasses still remained; the restaurants where during the summer you could see people tucking into such things as a T-bone steak which was probably about a week of my meat protein units not to mention the potassium heavy duty vegetables sharing the same plate. Then you would pass some youngster giggling at her holiday snaps in the street, too excited to wait until she got home to look at them.

That reminds me. I must tell you of one holiday abroad story I heard about. A woman was about to ski, had just got all her gear on and was caught short, which is one problem I did not get anymore. She decided to go behind one of the sheds. Unfortunately a gust of wind sent her out from behind her cover and as she was still on her skis she traversed down the slopes, picking up speed follow, follow, follow, followed by a yellow….. That is something I ‘ll have to forget about: skiing, being abroad and getting caught short. The next time I ‘ll be caught short will mean I have had a kidney transplant.

Having no kidneys and being on dialysis when your food is limited and your fluid intake is practically reduced to nil obviously reduces your social life.  On the occasions I would take up an offer and on this one I went to the local summer festival only to discover that my friends had already been drinking before they pick me up.  In fact when I was in the front seat and the driver was those in the car down a long hill I noticed that only that he was drinking a half bottle but on some occasions he would lift it up to his mouth and pulled a few mouthfuls but unfortunately because he was so out of it -- which I was to discover their name -- it sometimes was more than a few mouthfuls.  On one occasion I had to take over the steering because while he was all been down the alcohol the car was appearing off the road.  I was in no position to do anything but try and survive the journey to the festival site.  However on a more humourous note the driver's attempt to get across the suspension Bridge was so hilarious to me that I cried so much that after the event I realised I must have been entitled to at least a quarter pint of water.

To get across the bridge you lead in the 20p coin but the driver didn't have one that I had just one.  I had to call in my hand ready to pass over to him when he live opposite the slot machine just in front of the barrier.  He managed to drive adjacent to it but unfortunately he was too far away to take the coin open the windows stretches at the heart and find the slot.  He therefore had to reverse and coming near.  There was however a queue behind in hand the card beats began and all of them had to reverse because he had to reverse.  He brought in along the coin slot; I carefully handed to him the only 20p coin in the car.  He took it he leant out of the window; he dropped it.  He then opened the door to retrieve it is now too near the coin slot machine and he couldn't open the doors of visionary him to get outside sending down to the floor and search for the coin.  This meant he had to reverse.  Again.  And again the card beats start off again this time far more aggressively.

Meanwhile all this shunting back and forward and dancing around the coin machine resulted in another friend who was also drunk being sick account of the passenger back seat window directly behind me.  At this point I was glad I didn't have to go through the trauma of overindulgence in alcohol considering I can't even overindulging water.

Eventually the coin was spotted.  He walked back to the car got in drove gingerly up to the coin slot machine and very carefully what the coin in the slot and the barrier shot up and he had to quickly readjusts to the continuation of the journey and travel on to the festival site.

As I mentioned earlier I was not in a state to even help him because I was helping helpless with laughter but I lost so much fluid I thought I was entitled to a nice drink of water when we got there.

Ding dong merrily on dialysis. It’s Christmas time. I do not like this festive season at the best of times and nor do many others. Take George Bernard Shaw for example:

“It really is an atrocious institution, this Christmas. We must be gluttonous because it is Christmas. We must be drunken because it is Christmas .We must be insincerely generous; we must buy things that nobody wants and give them to people we don‘t like, all because it is Christmas – that is because the mass of the population, including the all-powerful, middle-class tradesman, depends on a week of licence and brigandage, waste and intemperance, to clear off its outstanding liabilities at the end of the year”

Not sure if I follow the last bit, even after looking up the words    brigandage (plunder) and intemperance (overindulgence). Many people round about this time of year go in to debt or increase their existing indebtedness. I particularly feel sorry for impoverished pensioners who sometimes starve themselves to be able to buy a gift for each of their grandchildren while keeping their financial problems quiet from their own children because they feel embarrassment by their poverty.

 During this period many hospital patients are sent home for a few days and that of course does not relate just to kidney patients. Although not an in-patient I was given the option to dialyse in the hospital in my family’s town for a week or so. In previous months my folks made provisional enquiries as to whether I could move up to their home and dialyse there indefinitely as I would then not living on my own. My parents were discouraged in pursuing this enquiry as there are only a fixed amount of hospital dialysis places and with the resulting administrative chaos, I could lose my place on the dialysis programme which would be a bit of problem. However a few sessions away would not cause any confusion, as everyone was aware when my next session was scheduled for in the New Year. I was not sure if living with my parents would help anyone. My Mum would be reminded every day of what I was going through. Also I may have gone down hill if people began to look after me. I felt having to fend for myself kept me going. 

The sad thing is I was looking forward to it. I would get away from my student/hospital town which I had not left for over a year or more, I would see my family, live in a warm house, and this is the really sad bit, see how another kidney unit worked and meet other patients, doctors and nurses as my social life was not actually that full.

They were pretty tough up there: they did not use “locals” before inserting the large dialysis needles. Luckily for me I had by this time accumulated a nice range of hardened scabs on my arm. Something a heroin addict would envy. There were many sites available as all the nerve endings were dead it did not hurt too much when inserting the needles without a local.

You were allowed a reprieve from the strict diet during x-mas. I guess this was a decision reluctantly made by the doctors as people were bound to be unable to resist the temptation of brussel sprouts, mince pies, Christmas pudding, all very high in potassium. There was a catch: to be allowed this concession you had to drink this gritty drink, resonium, because the powdery substance tendered not to dissolve properly in water. It also was part of your fluid intake for the day. It seemed pointless having to take something nasty just to be able to have something pleasant later on.

This medicine, resonium, taken several times would apparently “push” the potassium out of your blood stream into your tissue until your next session. I for one could not see the point. I would rather not take it. It was just like the first hour on the machine or the offer of dialysis bread. You might as well accept it; you cannot have these foods. No point. Just forget about it. Accept your lot. You do not need to be reminded of what you cannot eat.

The relative visiting and the largely attended festive meals made sure you did not. “Is that all you’re having?”, “Christmas cake?”, “Nuts?” “Mince pie?”, “Grapes?”. “Chocolate? Go on a few want kill you (don’t bank on it mate …I mean auntie)

I returned to my usual unit in the New Year and thankfully they were expecting me, as there was a place for me at my next designated session.

It was a cold winter that year. Snow blankets took sometime to melt. For a week or so the water pressure was low due to burst pipes and the supply was intermittent. So much so that the neighbourhood around the hospital had no supplies for certain times in the day as the hospital took priority. Not only were we very expensive patients but we were now also taking the local tax payers regular water supply. This water crisis sent the regular dialysis sessions into chaos. Not all the machines in the unit could work at the same time due to the reduced water pressure. Only about half were in use. This meant it was three sessions every 24hours as opposed to the usual two.  There were lots of unfamiliar faces particularly those patients that had to be called in as they would usually dialyse at home. They had insufficient reliable water pressure in their town to get the machine to work. You would consequently turn up for your regular session and wait hours for a machine to become free. I got curious about what would happen if there was a power cut. What would happen to us?. I was reassured that the hospital had its own generator, which would automatically kick in if there was a power cut. I was told this had already happened recently but it worked so well you did not really notice.

It has to be mentioned that many people on dialysis are able to hold down a full time job and many of these jobs are very physical such as labouring. I suppose I could have claimed a sickness or disability benefit rather than sign on as just someone unemployed but I did not want to institutionalise myself. During the period when the sessions were in confusion due to frozen water pipes I was late signing on.

At the DHSS, as it then was I got to the front of the queue to sign on and was asked why I was late. When I explained that I had been on a kidney machine I heard a chuckle behind me and only realised its significance when the DSS officer attitude changed and her lips thinned. Then I realised they were sniggering at my explanation and the official thought I was being sarcastic to her. She then asked me to sign below the note she had just written on my file, which said something like: “Was late because he said he was on a kidney machine.” I signed somewhat saddened that everyone around me thought I was lying. When I had finished signing I turned around to leave taking the opportunity to glance at the people in the queue and was met with two smiling young males, one who had his thumb up saying “nice one mate, nice one”. I was getting used to people disbelieving about the lack of kidneys but not believing I was even a dialysis patient was a first.

Cycling back from the unit early one winter morning I came across a car stuck in the snow being pushed by three blokes. “ ‘scuse me mate you couldn’t help us here for a mo. Need help getting this car moving.” I wanted to say no but what could I say that would be believed  “sorry mate, weakling, just come off a kidney machine. No energy. Totally knackered.” I am sure I would not get an understanding response, probably a sarcastic dig as I cycled off at about two miles per hour to my bed. So I got off my pushbike and went to help push the car. I am sure I did not help much. I may have even hindered. Had they looked to their side they would have noticed that their new mate kept on disappearing. I was usually to be found hanging on to the bumper being dragged along making the job even more difficult for my healthier young male colleagues. Eventually their car started to work again and I had to go in search of my bike in the bleak rural white landscape. Ignoring my psychiatrist’s advice, I walked along the desolate street expecting to find my relatively new bike pinched but to my surprise the loyal thing was still there, exactly where I had left it on its side munching its bail of hay without a care in the world.

Years before when I had my school boy paper round I recollect cycling home in weather very similar to this when I skidded on some ice at a roundabout, fell off the bike and knocked myself out. I remember coming round, not knowing were I was, not being able to get up apart for a second when I would have to lay down again as if to go back to sleep. On one of these attempted head raises I saw a milk float approaching. When the two occupants got to me they picked me up put me back on my bike and just pushed me off. I was now in double shock: first the concussion and secondly the realisation I was being placed in jeopardy by being sent on a journey where I had not really got my senses back. Somehow I cycled all the way home, put the bike in the garage and went to lie down. I then woke some time later thinking I had missed my paper round and dreamt it all. It was only when I inspected my damaged bike that the reality truly stuck me and was amazed at not having been run over.

I could easily sleep eighteen hours a day especially if I over did it on the protein. In the winter it was even more tempting to crawl into bed because the only heater was a one bar electric fire. To be able to get up in the morning, I had set up the electrics so that I could turn it on from my bed before releasing myself into the cold room. While in bed I heard a noise from inside the wall and wondered what it was.  Then it dawned on me: a chimney. I jumped out of bed and tapped the wall in the general area of what looked like a fireplace and I quickly fathomed out it was only covered by hardboard and wallpaper. So I went to work in dismantling it - bugger what the landlord may think. It was freezing. I found a fireplace set into the wall.

Before planning a big fire I crumpled up some newspapers and set fire to them ready to put them out if the chimney was blocked which it did not appear to be. To be doubly sure I went out into the street, looked up the house and saw evidence of smoke .I then set to work searching the neighbourhood for skips and to my delight noticed some council workers up trees with chain saws. I was able to scavenge some chunky logs.

I enjoyed making my own real fire and would spend many hours staring into the red and yellow glow thinking very deeply. Maybe too deeply but it was a wonderful escape and warm.

The rest of the house caught on and the house caught fire. I was in a local pub presumably nursing a coke or if I was really going for it, a half pint of lager that had to last me the whole of the time I remained there. It was on one of those very rare occasions when I had not yet had my full quota for the day. Then one of my housemates ran in to report that the house was on fire and the fire brigade had just arrived. It transpired that the person sitting next to me had left his fire blazing away without a fire guard using wood that would splinter and jump out of the fire which is exactly what happened. One piece jumped out landing between the wall and his bed. Luckily only his room was burnt out. The housemates had to team up to clear and redecorate his room so that the landlord would not find out. No doubt he would have banned all real fires and bricked up all the fireplaces.

The remnants of the fire were thrown out of his window to the cemented front garden. Passers by would stop asking inane questions like, “what happened here then?” My riposte would be: “Well we had a house warming party and it got a bit out of hand” but I thought better of it as they might know the landlord and grass us up so I repressed my sardonic lip.

Another reason I did not want to worry the landlord was in case the hospital authorities decided to investigate the possibility of installing a kidney machine in my room and send a day nurse to be with me whilst I dialysed. I could be creating a bottleneck in the unit as it was always meant to be a temporary arrangement.

Others would remain at the unit because of the difficulties in dialysising at home such as the partner not being able to cope. Once you were trained and so able to put your self on and off the machine you were usually expected to get a machine fitted at home but you needed a partner or reliable relative or friend willing to be with you through out the sessions as many things could occur most notably the lowering of blood pressure, thus going hypo and fainting. Also you needed to either be a homeowner or be given permission from your landlord to allow the alterations. I failed on all counts. The instalment cost would be about £1,000.00 (at the time) and would include plumbing it into the main water supply. 

I was concerned that the landlord may think he could be legally obliged to have this installed with the resulting plumbing and try and get me to move out. Anyway I did not fancy evenings in by my real fire with a hot cocoa- OK skip the hot cocoa- browsing through that new style magazine “Home and Dialysis Room”. “It is that heparin moment when you know, once again, you will soon have to leave the best decorated room in the house.”

The main reason the hospital was content that I remain dialysising at the unit was that there was a possibility of a kidney being donated from one of my relatives.

Throughout this period there was interest by some of my relatives to donate a kidney, which was very kind of them. I did not really show much appreciation at the time of what they were willing to do. I guess I was emotionally neutered .It was eventually down to my sister and my Dad. The doctors were very wary of allowing women of childbearing age to lose a kidney especially when sometimes after the birth both of a mother’s kidneys can collapse. A few sessions or weeks or months on a kidney machine, taking the pressure off the kidney somehow allow them to recuperative. Other times they do not and they have to wait like others for a suitable transplant. This happened to one of the patients whom I often spoke to during our dialysis sessions.

My Dad therefore became a contender. Initially I tried to put him off. Another patient in the same unit who was much younger than me had refused point blank to allow his father to donate a kidney how ever much his father convinced him he wanted to donate. I did not take that hard line and felt guilty being so selfish. My Dad had never been in hospital in his life (like father not like son) he had just started his own business and being away for the operation and the inevitable period of convalescing meant he would have had to plan the timing very carefully. The main issue of course was he - or was I - compatible? The first tests showed it was not going to be a perfect match but it could be a match of sorts.

The first hurdle was confirming that we had the same blood type but it was the tissue matching that needed careful investigation. In very simple terms tissue matching can be seen as comparing six heads. If it was a 6-6 match you had just met your identical twin. This would be the only real perfect match where you did not even have to take any drugs to keep your body’s immune system at bay. If it were a 1-6 or 2-6 the kidney would immediately reject if the operation took place. If it was a 5-6 it was, to all intents and purposes a “perfect” match. I do not know where my Dad came in on all this but probably something in between.

The test was to see how my body reacted to my dad’s blood. When people have a blood transfusion, if it is the same group your body can still react to it, recognising it as foreign but not resulting in any damage or symptoms and still be a good blood donation. If my body reacted in anyway to my Dad’s blood the transplant would be off because it was then bound to react to the kidney and attack it as soon as it was implanted even with the use of the anti rejection drugs. This was made very clear very early on.

I was only to find out the whole truth of what next happened years later and had I not written this book I would probably never have known. Dad showed my doctors an article from the Lancet, a medical journal, about how American doctors who, well before such a transplant, regularly got the donor to give blood transfusions to the recipient. This was an extra precaution to be sure the transplant would not reject. My doctors agreed to go with it but made it clear to my Dad that if there were any negative results the operation would be off. He accepted that and they went ahead. I would receive the blood during several of my sessions on the machine. He would get up at 5.30am on the days he would travel down to my unit to give blood in the many months before the planned operation. It was also decided that my sister would no longer be considered any further for the transplant.

Also his kidneys themselves had to be checked. Firstly for function, also checking his blood vessels near his kidneys were fine, checking they were not strangely wired up, which can happen. Some people can live a totally healthy life without ever realising they are differently plumbed urologically. Some later in life are found to have even three kidneys, which is not a big problem. The doctors also had to decide which of the kidneys to take out.

A few weeks before the final decision whether the operation could go ahead I was walking in the city centre with my Dad who was about to cross the road and had not noticed a bus heading straight for him and so – as you do- I pulled him back and with mock indignation he accused me of thinking of more than just safeguarding him from injury and more concerned with the valuable cargo he had on board.

CHAPTER FIVE:

No Longer Half Welsh, Half Irish

We were all set. The operation – or should that be operations -were going to go ahead. But when? Would it be successful? My Dad had to sort out all his business affairs and plan for the few weeks afterwards. He would clearly have to convalesce because the body of the donor in a transplant operation will be in more shock than the recipient who was going to gain from it.

The night before the big day I went to visit him in his ward, which was at the other end of the hospital.  We were looked after by completely different set of doctors so there was never any conflict of interest between my Dad’s health and my own.

CLICK………………………………………………WKQ: 2+1+1=3

Coming round was not as traumatic as the bilateral nephectomy. The nurses, some of whom I know very well by now told me they always knew I was OK as soon as they heard intensive swearing coming from my bed. There is nothing much wrong with a complaining noisy patient. The quiet ones are usually the cause for concern, especially when they have not regained consciousness by the expected time. Apparently farting is also a good sign because it means your system is moving again after all the anaesthesing drugs. (I must remember this excuse next time I am in my next law lecture.)

Back at the ward I was moved to my own special room in the transplant unit where the process of “ reverse barrier nursing” was to begin. It was the quantity of urine produced that was the most important indicator of all. Having said that you still had to check it was removing the toxins from your body and not accept it just on face value. I was on a saline drip, not allowed to drink normally at first.  The fluid amount was monitored so they could tell how much goes in and comes out, an indicator of kidney function. The transplanted kidney is not put where naturally placed kidneys reside but at the front in the abdomen just above the groin.

When I came around I was extremely thirsty but was not allowed any food or drink. I was allowed ice cubes to suck for my very dry mouth. It also had the advantage for the nurse attending to me that I would shut up and stop moaning about the pain and discomfort.  

Barrier nursing is used where a patient has a contagious condition and segregated from the rest of the ward or hospital. It usually brings forward images of people returning from a tropical climate with a condition that if not contained could spread very quickly. Only official visitors such as doctors and nurses can enter your room, then only with masks to protect themselves from the patient.

However reverse barrier nursing is where you, the immunosuppressed patient is protected from everyone else because you could pick up any virus on offer with dangerous consequences. I was to be in this strange world for a week. No visitors, no books or magazines, anything from the outside for the next seven days. No get-well cards although nurses would read them out. I became aware of their relevance, possibly for the first time in my life. I just lay there with my pain-killing drug drip (luxury); a catheter exuding a strange yellow fluid I had not seen for ages; the extra non-intrusive catheter for draining off my wound and all the heart monitor connections on my chest.

The ward was in the middle of leafy grounds but if my room could have been transported along side a high street pavement, passers-by could look in and wonder, “why is everyone in there making so much fuss about that bloke in the bed and his bag of urine.” They would not see many smiles just mine, as all the others would be wearing masks but could see, like me, just smiling eyes. And with all those happy eyes things were looking up.

Visitors could come to the entrance to my room and sometimes they came up to the outside window. My dad could visit me but I could not visit him. A nurse from the dialysis unit came to the window just after she began her shift to see how I was.

One day I thought, hey I should have been on my eight-hour dialysis session yesterday and I didn‘t go. I didn’t have to go. Maybe this kidney transplant think might work as it is working so far.

On the third day I was taken to the X-ray department, a nice trip out for me, to check the kidney and see how it looked. This appeared a bit risky considering all the potential viruses hanging about the hospital corridors but the x-ray was essential. The hospital, I guess, could not afford a massively expensive x-ray machine for that unit. It was presumably a calculated risk as long as I spent as little time as possible away from my germ free room.

        On my way back to my room I noticed a young girl in the other reverse barrier nursing room who apparently had also just had a transplant. This was confirmed by the nurses. Her darkened skin colour was due to her very low iron count. It was caused because of her parent’s recent conversion to the Jehovah Witness religion. An apparent doorstep conversion no less. The parents had refused any blood transfusions throughout her period of renal failure. Haemoglobin counts for healthy males are about 13 and for women theirs can sometimes be slightly less than that. At this time while I was on dialysis mine was about 7. This poor girl’s was 5.

This religion forbade blood transfusion because it says in the bible something equivalent to “thou shalt not take another mans blood. Verily” I would have thought that meant do not stab him and take his blood. It would hardly say, “oh and by the way when thou discovereth blood transfusion that also is included” and “thou shalt not have a kidney transplant”. What did they think was in the kidney? Ribena?

From my little knowledge of the law I did not understand why the hospital authorities could not apply to the High Court to make her a Ward of Court. Maybe her life was not in danger. I felt annoyed for her and like a frustrated Jehovah’s Bystander. I understand that during these operations extra measures need to be taken to collect any blood that is lost during the operation so that it could be recycled back into the body. (Definitely not a practise that any pub landlord should do with any spilt beer!). But what would have happened if there was a problem during the operation and extra blood was urgently needed? Religion. Eh?

I have since done a bit of research into this religion. Genesis 9: 3-6 “Everything that lives and moves will be food for you…….But you must not eat meat that has it’s life blood still in it.” That is one of the biblical references they quote to explain their belief. OK chaps, if you are going to take the bible literarily let’s not pick and choose. Hope no one worked on their web site seven days a week. Exodus 31.16 “Whoever does any work on the Sabbath day must be put to death”

If a member of the fellowship got ready for an illicit rendezvous one night and borrowed their sisters expensive scarf because it was a bit nippy be warned: Deuteronomy 22.5: “A women must not wear men’s clothing, nor a man wear woman’s clothing, for the Lord your God detests anyone who does this.” Deuteronomy 22.9: “Do not wear clothes of wool and linen woven together”. Deuteronomy 22.22: If a man is found sleeping with another man’s wife, both the man who slept with her and the women must die”

And if someone nicks some grapes and then does not pay an old debt don’t forget to let them off. Deuteronomy 23.24 “If you enter your neighbours vineyard, you may eat all the grapes you want, but do not put any in your basket” (psst: take a big paper bag, in the bible it doesn’t say you cannot). Deuteronomy 15.1 “At the end of every seven years you must cancel debts.”

In my book (“The Book According To Me. Chapter 1 Verse 1”) I think there is a bit of cherry picking going with or without a basket.

I investigated to see if, since my week in the barrier room, they had changed their attitude to blood transfusions. Nope. Well er :

“The Watchtower Society has issued new instructions requiring Jehovah's Witnesses to offer greater resistance to court-ordered blood transfusions.

The June 15, 1991 _Watchtower_ magazine (p. 31) suggests that JWs "avoid being accessible" for such a court-ordered transfusion by fleeing the scene, or else follow the example of a 12-year-old girl who had been taught to "fight any court-authorized transfusion with all the strength she could muster... scream and struggle...pull the injecting device out of her arm and...attempt to destroy the blood in the bag over her bed."

The _Watchtower_ article states that this course is to be followed even if such action might make the Jehovah's Witness "a lawbreaker or make him liable to prosecution" by the authorities. While medical personnel generally agree that adults have the right to refuse treatment, hospitals routinely obtain court orders when children of Jehovah's Witnesses require transfusions and the parents refuse to consent. In the past, many Jehovah's Witness parents appeared content to leave the matter there: they were freed of responsibility in the eyes of their leaders, while at the same time the child's life could be saved. (Watchtower rules mandate the punishment of shunning for any who accept blood willingly.)

But now hospitals can expect many more Jehovah's Witnesses to follow the headline-making course that only a few took in the past. Obedient to the new instructions, Witness parents may either physically intervene to obstruct treatment or else abduct the child from the hospital and flee -- regardless of whether this will make them lawbreakers liable to prosecution.

                                                -- David A. Reed”

Copyright 1994 by the

Christian Research Institute, P.O. Box 500-TC, San Juan

Capistrano, CA 92693.

          It looks like they also need to wake up to another one of their “current beliefs” as that is how they strangely worded it in answers to questions on their mail bag web site page. To the question why they do not kick out child molesters they answer that to be “ disfellowshipped ……… the present judicial process demands that there must be two witnesses to such crimes”. Well what about, where there is only one witness, at least a bit of shunning which is the punishment dished out to those members who are found to have committed the despicable offence of accepting a blood transfusion. 

          Anyway back to me. A cardiologist would arrive in the early days wheeling in a little trolley carrying a portable ECG scanner but then: 

“It was just like any other day in the barrier room. But for one man things were about to change for the worse. From a distant part of the hospital complex, just after elevenses, approached a member of another sector of the medical professional that was to make his life hell for the next few days. Little did he know that just out of sight behind the reverse barrier room door a woman was slowly but efficiently putting on!!: Her white gloves and then!!: Her white mask? Suddenly, without warning the door to his room swung open and his quiet life would end forever. It was: The Physiotherapist! Then he was to hear the immortal words:

“Oh hello Michael how are you today. I must say you look much better. Already you are getting a sign of healthy looking rosy cheeks. Looks like the kidney is taking well. Had any visitors today?”

But I knew what was coming: torture. It was imperative that I did not get an infection in my chest but I could not cough properly because the scaring made it feel as if my insides were about to rip open. Anyway we had many very pleasant sessions together when she said “come on you can do better than that” and I would say “it is all very well for you but you do not know how painful it is.” It is very strange. For me it is as if there is a built in mechanism to stop the cough just as you breath in and about to go for it. I could have put my hand in a fire or done something that would not take a few seconds to prepare for but coughing or clearing your throat was extremely difficult to carry out. You would start, then at the last second your body would remind your brain that telling your mouth to cough was a really dumb idea because you know how painful it was going to be if you continued the process. I do not think that if someone put a gun to my head and said “cough” I could have done a fully fledged cough. I am sure other people who have had an abdominal operation would know what I am getting at.

 It was, however, very important because unlike my previous operation I was now immunosuppressed and more likely to get an infection. After my bilateral nephrectomy I was out of bed after a few days and forced, sorry invited, to walk around. Now I was stuck in the reverse barrier room, unable to walk around.

I began to make some subtle enquiries as to when I would be off the dialysis diet but for the first few days it was not allowed until they knew I had a successful transplant. I was producing urine again which was promising but not conclusive. On each occasion a meal arrived I, at a glance knew I was still on my dialysis diet until out of the blue a nurse offered me my first cup of coffee, explaining the doctors had just sanctioned it. I was off the dialysis diet. This strange drink did not arrive during the normal meal and drink times so it arrived in a small plastic cup. A treat from one of the nurses with further encouragement to drink lots. It was easily the best cup of coffee I had tasted in ages for one simple reason: it was the first time I tasted and drunk coffee for just under two years. I was now to go from the medical advice of do not drink very much to drink loads.

Having a catheter into your bladder was arguably more painful for men than for women especially in the morning when …. (Oh it doesn’t matter.) During the rest of the week all the tubing was gradually removed from my body, the first being the heart monitors, then the catheter to my wound and then the painkiller drip.

When the seven days were up I was moved to a normal room and began walking around the ward with a nurse holding me in case I fell over, still with my bladder catheter. Then the biggie :on my own up the ward corridor. The trick here is not to forget you still have a catheter attached so when you stop to talk to someone such as a nurse, cleaner, fellow patient or you simply need a breather, you must remember to pick it up before you continue your expedition or …… ..eck.

Dr Phil Hammond mentions this in his comedy stage act when medical students played a certain sporting activity. Footballs were original made from animal bladders. Well these students apparently used the bladder as the goal, not the ball. Inserting two adapted catheters together and they would pee into each other’s bladders. Was it worth it fellas? Look at the discomfort enjoyment ration. I just hope they had to insert a normal one so they learnt what patients had to go through or pee through.   

I was always apprehensive about the day the nurse came to take the catheter out but once done I felt sort of human again. Also gone were the calcium, iron and vitamin tablets. In had come the steroid and immunosuppressive. I was still to take blood pressure tablets for a while until they were, hopefully, no longer needed. The steroids and immunosuppressive were to be gradually reduced to a maintenance dose assuming there were no complications over the coming weeks and months.

Once they took the catheter out I was faced with the rather easy task of peeing when my bladder was full. I had not peed for over a year, my bladder muscles were very weak and I now had to build up those muscles to be able to pee naturally again now the catheter was out. When I had my first historic pee it wasn't as if I was going to fill a water tank. My bladder had been empty for a long time. I was therefore advised that every 15 minutes I should try even if I did not feel the need. This way I would build up the bladder muscles. So I brushed away all the cobwebs and got to work. It was very strange seeing what most people never take a second glance at.

Pointing Percy at the porcelain. A very common euphemism for when blokes go to the loo. Although I have just had – so far, anyway -a successful kidney transplant, it will take sometime before I could pee without walking away from it. I now have to collect it on a regular basis so that test can be carried out to monitor the kidney as the first few weeks and months were the most trying. Also my input and output was measured to check I was not retaining any fluid that would be a concern and of course I was regularly weighed. 

The medical school from another part of the hospital asked me if I would mind having photos taken of what turned out to be classic acne symptoms brought on by steroids. The symptoms would reduce over the next few weeks and months and they wanted the photos quickly for their medical journal. So I then went to the dermatitis ward to be photographed with the reassurance that my face would not be included in the publication. I had my first ever photo shoot and thought of asking if they wanted my worst side, then returned to my ward.

I was able to meet up with my Dad. We went for what seemed like a long walk in the hospital grounds. With all the groans emanating from both of us I reckoned if we had a drum machine and a mixer we could have made a few ambient records. Although we were in the hospital grounds I knew I was not out of the woods yet. These were the crucial days: to see if the kidney would take. Doctors had noticed that with all transplants, towards the end of the second week the body seems to have get a second wind, a new burst of energy to attack the alien kidney. What ever happened I would not be regularly peeing blood ever again. Or so I thought.

One late evening I was in my room and lay on my bed hearing this weird buzzing noise in my ears. It was very strange and I hadn't experienced anything like it before. After an operation or after just taking a new drug or when really ill you expect something new. A new pain, a new symptom but this was completely out of the blue. This was a new one so I waited in anticipation. After lying there for while I had this urgent need to go to the toilet, I walked across the hallway to the toilet locked the door and as I sat down all hell broke loose: I simultaneously bled from every orifice apart, I think, from my ears. I thought: so this is it then. I slipped off the seat, fainting, collapsing on to the toilet floor. I don't know how long I was unconscious for, probably a few minutes but when I came around I thought: crikey I am still alive. I heard female voices. They were the nurses banging on the door asking me to unlock it. I was lying on a NHS hospital toilet covered in my own blood with what must have been pints of it all over the toilet floor. You will be sad to learn that I did not shake my head vigorously to bring myself round quickly like in the movies but I stood up, managed to open a door, the nurses grabbed me and walked me back to my room across the hallway whilst the doctor was called. (An angel of a doctor? A saviour of doctors?)

 I was very quickly put on a special type of drip because there was no time to get blood nor get it cross matched. They had to get fluid into my body as quickly as possible not only to save me but also to try and save the recently transplanted kidney that was going through a bit of a roller coaster ride itself. They then had to put one of those drips that go up your nose. As seen on cheap television programmes for dramatic effect but for those lucky actors it would just be placed under their nose. For most real patients they usually had it inserted while they were still unconscious. I unfortunately remained conscious but there was no time for pleasantries. It went up my nose and down into my stomach so as to drain out all the blood. Was this a stomach pump? It was very uncomfortable especially when it had to change direction at the top of my nose; I was constantly sipping water trying to help the process. I then lay on my bed while I was cleaned up but for the rest of the night I could not really sleep thinking how lucky I was and that had I previously been sent home and this happened anywhere but a hospital I would have clearly not survived.

What had occurred was that with my weak stomach (my dad told me I inherited a weak stomach off him. I also answer to the name of lucky) and the high doses of steroids, I had severe internal bleeding, known as huge hemotemisis. How the nurses found me was pretty lucky and a tribute to their dedication to their duties. Maybe someone was looking for me or noticed a sound coming from the toilet that was like the tap was on full. “Michael what are you doing in there.” and that’s when I must have come round. If they had banged on the door I could not have done anything while it was all happening and was just disgorging. I was just a mere observer. I could not have spoken. If I could I might have said something like: “Sorry spot of bother with the old internal bleeding. Must splash”

It was also the night that a newly qualified doctor was in charge of a ward for the very first time as she told me afterwards. She must have been thinking gosh they couldn’t all be as eventful as this.

In the morning during the doctors round I smiled at them as they entered and was jokingly asked why I was smiling. As they left one of them said  “ Michael we nearly lost you last night”

I joked later that I thought my kidney was rejecting, that somehow it had slipped its moorings down in my lower abdomen and somehow passed through a blender and then out. You always hear even then about the dreaded “r” word from other patients and the risk with all transplants. I had got my first, and it was not to be my last personal experience of it.

I was eventually discharged and put on a drug to help protect my weak stomach lining, warned against taking aspirin, being sick and retching as both could bring on internal bleeding. I went home with a big bag of exciting new drugs. (Something for nothing eh?) And a:

“STEROID TREATMENT CARD

I am a patient on STEROID treatment, which must not be stopped suddenly.

●If you have been taking this medicine for more than three weeks, the dose should be reduced gradually when you stop taking steroids unless your doctor says otherwise.

●Read the patient information leaflet given with the medicine.

●Always carry this card with you and show it to anyone who treats you (for example a doctor, nurse, pharmacist or dentist) For one year after you stop the treatment, you must mention that you have taken steroids

●If you become ill, or if you come into contact with anyone who has an infectious disease, consult your doctor promptly. If you have never had chickenpox, you should avoid close contact with people who have chickenpox or shingles. If you do come into contact with chickenpox, see your doctor urgently

●Make sure the information on the card is kept up to date”

The information refers to your present dose, which is written on the inside of the card.

The steroids do change your appearance and there are a few possible side effects. Taken from “the patient information sheet” that I guess most never read we have the possibility of the delights of indigestion, peptic ulcers, increased appetite, weight gain, swollen abdomen (just like old times but not as severe I hope); ulceration or thrush of the throat; severe upper abdominal pain, unusual growth of hair, fatigue or drowsiness, swollen feet or ankles  (ditto for my ditties); high blood pressure  (oh referee!); muscle weakness, brittle bones, tendon problems; acne, thinning of the skin leading to bruising, stretch marks , broken veins or slow healing; mood changes and insomnia ; problems with your eyes  including glaucoma and worsening of eye infections , increased likelihood of infection and thrombosis.  There is mention of slowed growth for a child patient and stopping of, or irregular periods for women. The changed appearance brought on by weight gain is more pronounced for women because, I am lead to believe, of their different fat /muscle ratio compared with men.

Now the good news: these are just possible side effects. Now weight gain and voracious appetite are guaranteed. The latter ensures an increase in the former and even more likely because for the first time in many years many patients can eat what they like.

In one book written for the medical profession mention is made of weight gain, swollen abdomen and thin arms and legs, the latter not mentioned above, and describes the a patient as “A lemon on two matchsticks.” Now I have the utmost regard for the medical profession in their work to keep my fellow renal patients and me alive but I do not think these jokey descriptions helps the new generation of medical students. When they put the book down and enter the ward it does nothing to remind them that they are dealing with other humans and not a fruit cartoon character. I think we can all work out what a torso could look like given the above side effects with arms and legs that can be thinner than usual.

To the author who probably chewed on the end of his glasses as he thought of a funny catchy description, remember the occasional patient may read your stuff. They have had years of looking in the mirror each morning, seeing how unwell they look. Occasionally the finger may well be pointed at patients that may have, in part, contributed to their particular organ failure, whether it be the liver, lungs, heart or even skin but the kidney is one you cannot even begin to protect by a slight change in life style. Now after a possible new life they have to cope with an overnight different set of appearance changes. So remember do not mock appearances over which people have no control over. Four Eyes!    

Please note that these are not to be confused with anabolic steroids that the ridiculously looking musclemen use. There were several unpleasant side effects such as a permanently swollen face very noticeable in the early weeks before your dose could be reduced. It is the side effect that concerned me the most.

         Before being discharged from the hospital I visited the dialysis ward at the other end of the hospital complex and my Dad, rather considerately, suggested we took a box of chocolates for the nurses in that ward who had helped keep me alive before a kidney became available. The doctors used to work in both units and the nurses in the transplant unit were there for the happy times. These nurses appreciated this gesture and commented that they were often over looked at this happy time once the patient was freed from the regular attendance at their unit.

I discovered the surgeon was a Rolling Stones fan and a friend of mine had a bootleg of one of their concerts. So I sent him a copy. Hopefully it would be more appreciated than the many bottles of drink he must get. He will probably never have to buy one for a party or meal ever again.

"A New Beginning"

Along with hundreds of other students, law graduate Michael O'Sullivan this month began a new academic year. Nothing unusual about that you may say, but there is something very unusual about Michael. This 26-year-old law finals student under went a kidney transplant only two months ago, and has recovered well enough to be able to enrol on the course he had hoped to complete last year.

Michael suffered with the hereditary condition polycystic kidneys, and after years of treatment and special diets, had both kidneys removed in August 1981, because they had grown so large. This operation resulted in hospitalisation for two months and dialysis treatment every other day. Michael heard of the necessity to remove his kidneys in the same post as he heard of his degree award. He began his Law Society course, but the operation took its toll on him and with such side effects as loss of memory, he felt unable to complete the course.

It became apparent that Michael would need a transplant, and the quest for a donor began. His father proved to be partially compatible, and a transfusion test was needed to see if his blood would be rejected. Fortunately it was not, so the transplant went ahead. This was successful, and was followed by a period of "reverse barrier nursing", where Michael was ensconced in a germ free room, allowed no visitors, given high dosages of drugs to combat infection. This was a trying time for him, but well worth it, apart from one slight setback, Michael has progressed since then, and is now feeling much better.

Apart from one or two side effects of the drugs, Michael says it is a marvellous to be able to abandon the restricted diet he has followed for the last three years, and is obviously delighted to be able to start on his Law Society course. His father has also recovered well from the operation.

Mike is a great supporter of the kidney donor scheme, and although he obviously is unable to contribute in that way, he carries a card indicating his willingness to donate any of his organs to those who need it. He hopes that readers will be inspired by his story, and he will be carrying cards to distribute to those who feel they would like to join the scheme. It would be one way of paying tribute to the marvellous work done by the kidney unit at our own XXXXXXX hospital, where all Michael's treatment has taken place, and may ultimately represent another "new beginning" for a fellow human being.”

When the Polytechnic found out about my story I was asked if I would like to be interviewed for their internal newsletter. If you have been paying attention you will spot some errors in the resulting article above and all my own fault:

1.    There is no treatment for polycystic kidneys. Yes you can reduce the symptoms but no treatment in the sense you can cure the problem or even slow down the deteriorating function .You will not hear “the treatment has worked” which can be the case with other conditions.

2.    They were not removed because they were too big but primarily because otherwise there would have been no room for a possible future transplant

3.    Before the operation I was already undergoing dialysis treatment.

4.     I was told I would have to start dialysis – not have my kidneys removed - the day I heard I had got my degree.

5.     I lost my memory when my kidneys were removed and had recovered before I attempted the course but left it because it was impossible to continue with dialysing three days a week.

6.    Became apparent? I had no kidneys. It did not become apparent. We somehow knew already I needed a transplant. 

7.    On a more medical note, the blood was not going to reject but how it reacted in my body would indicate if a transplant from the same person would reject.

8.    The drugs were not to combat infection but to stop the kidney rejecting .The side effect of the drugs was to increase the likelihood of infection.  

OK a bit pedantic and anoraky but I needed to put the record straight. Also some reader (not you of course) might question inconsistency in the book. I do feel I am being slightly unfair to the journalist who interviewed me as I was shown it before it was published. I am responsible for these errors as, I recall, I just scanned it. I must have overlooked them in all the excitement and not wishing to criticise the piece, being so grateful that anyone wanted to write about and publicise the plight of kidney patients. I was primarily concerned about not appearing a fool and the piece was not going to be a load of sentimental old twaddle.

Although I was still a regular visitor to the renal unit I was no longer going to the dialysis unit. Soon, if I stayed lucky, I would be slowly weaned away from the renal world, until then being nearly half my life. Sometimes I felt like a prisoner on early release. I felt an underlying duty to speak out for my recent fellow inmates. I would possibly not see some of them ever again but I felt a bit guilty being so fortunate. I felt then I had a tiny inkling of what it must have felt like when those falsely convicted prisoners were eventfully realised from prison having met fellow prisoners that they felt were also innocent. Their years of incarceration having been brought about by the shenanigans of a few members of the West Midlands Laughable Crime Squad. For a time they had introduce into the English legal system the new maxim: Innocent until proved Irish. “Release the UK 5,000!” Nowadays the figure on this old banner will need to be quadrupled. 

This publicity might make people aware of the need for not only carrying cards but also relaying that decision to their next of kin as they own your body after death and it is their decision to donate should anything happen.

Could you imagine the possible confusion caused if I carried an unamended kidney donor card and was initially looked upon as a potential donor? Normally my next of kin, maybe my Dad, would give consent “Yeah sure any organ but if you see a kidney that’s mine.” Otherwise they would go for my kidneys and some one should notice I have not got any in the usual place (“ Hey this guys got no kidneys. No wonder he’s dead.”)

No one asked me for any cards as hinted at in the article but now and again, behind my back, I would hear someone whisper: “Hey isn’t that the bloke who had that transplant”

I did carry the new organ donor card where you could cross out the organ you did not fancy someone having after your death It reads something like: “I would like my heart/kidney/cornea /liver/ soul to be donated after my death. Please erase ones that you do not wish to be donated”. I crossed out kidney but felt like writing in: “Find the kidney and win a prize!!” If it could be transplanted again, it might be hundreds of years old before it got any rest.

Going around at the time was another card. On one side it said:

 “DO NOT CARD – I do not want anyone to make political capital out of my misfortune.” Turn it over and it continues: “I request that if I am injured in a plane accident or train crash, I shall not be visited by Mrs Thatcher”

That reminds me of a story I was told where British Rail had set up an “accident” to train its staff in case of a real crash. Unfortunately a real doctor passed by and not realising it was all pretend entered the scene of the “train crash”. Naturally everyone else let him through. He opened up his bag and injected this  “casualty” in the bottom who then turned round and said, “Do we really have to go that far?”

“Shoulder to shoulder…back to back, ”

Fighting fit father of four Mr John O'Sullivan donated one of his kidneys for surgery so that his 26-year-old son could live a normal life.

The operation, carried out at XX hospital entailed both Mr John O'Sullivan and his son lying back to back in the operating theatre before surgeons lifted the healthy kidney from father to son in a carefully timed manoeuvre.

Mr Michael O'Sullivan, aged 26, was born with cysts on his kidneys and, after a lifetime of suffering, was told last year he would have to have operations on both.

Since the operation - which ironically he underwent on the day he was awarded a law degree at XX Polytechnic - he was being kept alive by kidney dialysis machines and other treatments.

Until a fortnight ago that is... when his father, John, was rushed from the family home at XX, to XX hospital in XX to play his part in back-to-back transplant surgery.

John, the managing director of his own pharmaceuticals exporting firm in XX, said: "before the operation Michael was a patient at XX General Hospital and he had been in XX awaiting a donor since August.”

"I know one can live happily on one kidney alone, for it was never a decision for me to give mine to Michael. It is a fantastic experience to be able to give him a new life. I would recommend it to anybody.”

“My only worry was that the kidney was not going to be good enough. It is not every day that you get an opportunity do something worthwhile although at first Michael did not want me to go through with it”, he said

Michael's father, who returns to work come Monday after three weeks' convalescence, said he felt very well. Michael, former XX College pupil, plans to continue his law studies and go on to become a solicitor.

Another would-be donor was Michael’s sister, Susan a 24 year-old teacher at XX school. Like her father she went for tests but was told he was more suitable for the transplant.

Michael's doctors in XX said they were pleased with the progress he has made since the operation on the 26^th July

“His condition is satisfactory and we expect him to be discharged some time next week” said a hospital spokesman.

But for 3000 the wait goes on

Since pioneering surgeons at London’s Hammersmith Hospital in the Sixties first carried out kidney transplants, the number of patients receiving treatment has grown steadily.

Last year, about 900 people under went kidney transplant operations. The average success rate is between 60 and 70 per cent.

Though there are believed to be nearly 3000 patients awaiting a donation a recent national poll showed that only an estimated three per cent of the population carries kidney donor cards in Britain.

At XX General Hospital 15 kidney transplant operations - most of them successful - have already been carried out this year by surgeons Professor XX and Mr XX.

Of the 145 patients currently receiving kidney dialysis treatment at the hospital, half are on the transplant waiting list.”

 

I did prefer their  “fighting fit father of four” alliteration to mine:  “fucking fourth fish finger”. What about: “Sickly son’s survival sessions cease…supposedly”

Once again a few errors, which this time I cannot be responsible for as I was 120 miles away. Must change my out of town agents.

Anorak time again:

1.    Operations on both? Yes in the sense you have an operation on your appendix when it is totally removed. See: once again people cannot believe you can have no kidneys. I bet the journalist was told I had no kidneys for a year but probably thought s/he had misunderstood and amended his/her notes accordingly.

2.    No. I did not have operation on the same day I got my degree.

3.    Rushed from the family home? OH give over. So dramatic. We had been planning this for months!

4.     It was not back-to-back. They took my Dad’s kidney out while I was outside of the operating theatre getting prepared when I was told my Dad’s operation was already under way.

I love the bit about “ a carefully timed manoeuvre”. Well I am sure my Dad’s kidney was not removed and then a member of the medical team holding it would slowly turn round and see me sitting up in bed talking to the nurses showing them all my operation scars.

In the general information article under the one on me it stated there about 3,000 awaiting a transplant. At the time of writing the figure is now 7,000.

My Dad made a claim on his private health insurance policy that he had taken out as he was effectively self-employed and the sole family breadwinner. The response: because it was “a self inflicted wound” he was not covered. I am sure a campaign could be started to persuade these large companies to change their standard policy agreement to incorporate. Such a variation would not exactly break the bank and it is pretty easy to prove you were not trying to con

them. Maybe the government could introduce a compensation scheme for potential donors. After all does the government want to save money on the NHS or what?

The students and lecturers commented on my healthier look and that I had put on weight (“it ‘s the steroids”). One lecturer commented that my eyes were more alive and sparkly and if some one spoke to me which meant that I had to move my eyes to make eye contact they would instantly dart across whereas before they would apparently move slowly to their intended view point. I even had my eyes tested during this time as I then wore glasses and was actually prescribed weaker lenses. Clearly my eyesight had been affected by lack of good kidney function over those preceding years.

It is very difficulty to explain how you feel after a transplant .At first you are recovering from the major operation itself and in my case I had that extra complication. So you do not realise how ill you were until once you are discharged and realise you are doing things that you could not do before. A good analogy, I would propose, is eyesight. Eyesight fades gradually over time and you are not really aware of it deteriorating. However when you try on your nice new pair of glasses you realise what you can now see and are struck for the first time how bad your eyes were. 

To some extent the kidney and my resultant better health was improving at a rate that was tricky for accurate drug prescriptions. I was in the Poly library reading a paper in one of those very low comfy seats when I got up too quickly, as it turned out, as I went hypo - my blood pressure dropped- and I fainted banging my head on the side of a computer monitor and landed, thankfully, back into a seat, somehow facing out from the seat I had just attempted to vacate. I looked around and no one had noticed my failed little circus act. I checked my head to see if I was bleeding. I kept my hand up there to cover my mouth as I was in a very public place with lots of students roaming around and knew I would be wearing a stupid grin. This is a very common side effect of going hypo: you go light headed as if you are stoned.

I was not bleeding. So I decided to have another go. The only safe way was to get up in stages: first sit upright on the edge of the seat, wait a bit, then stand up slowly, ready to fall back into the seat if I felt woozy. It appeared it was time to reduce or possibly come off the blood pressure drugs altogether. I then went off to buy a salty snack to try and bring my blood pressure up.

Afterwards I pondered that while I was fainting and descending whether, by the time I landed and had head butted Mr PC Monitor, I was now still fainting or whether the fainting stage stopped as soon as I banged my head. I may be getting a bit obsessed comparing reality with films but I thought this because you always see in films people being slapped around the face when they are unconscious.

It was a long repetitive haul in the first few weeks after the transplant. My check-ups were during the day, which meant missing lectures and tutorials, making plans to get back to the Poly very difficult because of all the waiting in the transplant unit for the doctor to see me. You hand in your 24-hour urine collection and simply wait in the ward. If there's an emergency on the ward you have to wait some more. Your obs are taken. Your blood is taken. You end up going home having possibly missed all the days’ lectures and tutorials.

There was very little space in the renal transplant unit, an expanding NHS sector therefore these check ups took place in the ward corridor (the corridor? We use to dream of check ups.) I recall some time before that the head of the unit had his office in a cupboard (laundry cupboard? You were lucky) but eventually the doctors were based in a portacabin. (They get spoilt you know)

Even taking into account the steroid side effects some of the nurses were surprised that in the following weeks I had not put on as much weight as was expected. I put that down to my immediate return to a vegetarian diet after the transplant. Apparently vegetarians are 10% lighter than non-vegetarians of a similar height. Then again we may be back to looking behind the bare statistic. For instance vegetarians are possibly more health conscious and generally lead healthier lifestyles.

Ask in a café: “Is there anything for vegetarians?” and you will be amazed at the varied answers you get back. “Do you eat fish?”; “Well we’ve got chicken?” (Oh is that vegetarian chicken then?).

I do not impose my vegetarianism on anyone but some people seem to want to have a go as soon as they find out. “Do you wear leather shoes then?” People with no apparent principles trying to catch out people who are striving to have some. I will defend it and will point out things in cafes. For instance in one north London pub all the apparent vegetarian meals come with oyster sauce.

I challenge people who say they are vegetarians but clearly are not. These lot cause all the confusion in the cafés and restaurants. “I am a vegetarian but I eat fish”. (Well then you are a non-meat eater.) “I am a vegetarian but every so often I cannot resist the smell of bacon.” But I do know how they feel. I am a pacifist but every so often I feel this urge to beat someone up with a cricket bat.

Anyway my visits to the corridor were less frequent. Initially I had to come in every day and then the time period was slowly extended to every other day moving on to twice a week, then once a week, a fortnight.

I did not get further than that. The blood test showed I had an antibody in my system. My body had effectively recognised the foreign kidney. Excuse the football analogy but it was a bit like being two nil down in a Cup final with five minutes to go. Something had to be done quickly. It was only a question of time before the kidney was attacked, rejected and I would be back on dialysis only a few weeks after having the transplant.

What I am going to tell my parents? After my Dad’s tremendous courage in going through the pain and discomfort that came with giving a part of his body away and my Mum no doubt feeling guilty (ping) that her hereditary condition had brought this about. I was not feeling too good myself knowing how they may be feeling (pong) were I to tell them. I toyed with the idea of not doing so but when asked a direct question about how things were going I could not very well lie.

The unit had a super-sub. (Sorry. Sorry). One of the consultants had just come back from the US having been introduced to a procedure involving what is known as anti-lymphocyte immune globulin. I was told it had only been used in England twice before, as I understood it, for the first time in that hospital so I was to be the third person to have this groundbreaking method of rescuing a transplant in such a situation. The idea was that I was to have plasmapheresis.     

This meant all my blood was to be removed. Crazy thoughts entered my head about how it was to leave my body: What? All at the same time? My imagination has its moments: me “sitting” in corner of the blood transfusion with the doctor in charge of the long progress.

“Dringggg. Dringgggg. Dringggg. Dringgggg”

“ Excuse me Michael. Won’t be a moment”

“ Hello”

“______________________, ___________________________. _____________”

 “Yes darling I’ll be back about seven tonight something cropped up.”

“_________________________________. ________________. _____________________________________________,________________________________________”

“Oh really.”

“______________________, ___________________________. ________________________”

“Lovely. That’s my favourite.”

“_________________________________________________. _____________,______________………….”

(Dried prune in corner attempting to tap fingers impatiently but fails because of a haemoglobin level of exactly nought )

“………______________________, ___________________________. _____________”

“That’s funny. So what did you tell her?”

“_____________, ___________________________. _____________”

“ OK Bye.”

“_____________”

“Yes. Love you”

“_____________________________”

“No you put the phone down first.”  

“_________________________________________________. ________, _____”

“ I love you too”

Blood is made up of four constituents: plasma, platelets and red and white cells. The antibody is in the plasma. So the red and white cells would be taken out with the plasma and separated by use of a centrifugal spinning machine. My plasma would not be returned but chucked away and replaced by donated plasma.

I therefore had to attend the hospital blood donation building and for most of the day sit in this chair and have needles inserted into both arms. My blood would come out of one arm and go through the machine. My other arm would eventually receive the returning red cells with the donated plasma.

As you may have spotted it would be impossible to take all the plasma out in one go and so traces of it would be left and this is where it got clever. The antibody would be put in a horse and the horse would create an antibody to my antibody. To get rid of the all traces to stop them reproducing again, the horses anti body would be injected into me and hopefully kill off my antibody. I.e. all the traces. Simple really but would it work? And no the horse was not in the adjacent bed or anywhere in the hospital.

As a bad impressionist of the poet John Hegley might have written:

“I am linked up to something medically fangled,

So all of my blood can be carefully mangled,

In the hope that the antibody can be strangled,

And my fears and hopes for my transplant disentangled.”

So after the blood change I was moved back to the transplant unit and told I would be receiving several injections over a week containing the antibody. They could not be normal injections into the arm because the drug was so powerful that if I had it directly into my arm I would get thrombosis. The entry point was to be into my

main artery just below my heart.

I waited in my own room expecting to have to go to theatre or something. The consultant came in, produced a six-inch needle and said “I thought we might as well do it here in the ward”. I unbuttoned my pyjama top as requested, got my thumb and fingernail ready and waited. With the weight of his body he carefully eased the needle down into my artery in my chest. As he did this a nurse arrived with the pre-med. She looked at the scene realising she may have been a weeny bit too late. I looked at her, the consultant looked at me looking at the door. Then he looked down to me and said: “Oh haven’t you had your pre med Michael. I am sorry.”

This was to be the first of several doses of the horse antibody.  A tap was going to be fitted into my chest, known as a sub-clavial line but beforehand I was given the option of having a permanent one, which would mean I would have to stay in the hospital for the rest of the week. Alternatively there was the temporary one, which could mostly be removed between transfusions, I could be temporally discharged, having to return to hospital for each dose. I jumped at the chance of being discharged.

Although a line remained inserted it seemed well protected. This was important as I was told if it was knocked there was a slight risk air could get into my artery and I could die from air embolism (air bubble blocking main artery). So I had to be very careful. They did not say don’t go to nightclubs but then for that matter they didn’t specifically say do not go scuba diving either.

Looking back I was a bit of an idiot as I continued to go down the nightclub. However depending on the result in the next few weeks this could well be my last opportunity to drink there.

I was with some friends who met some nurses and to make conversation as you do I told them I had a sub claveal line in. The nurse I was talking to didn't believe me and because I was beginning to get fed up of not being believed whenever I ever explained my medical condition to anyone, I pulled back my shirt. She looked incredulous and appeared to sober up very quickly

The local press somehow got notice of this transplant as a news story and contacted me and I agreed that they could interview me in my room. Early into the interview I told them of the rejection episode I was going through and their heads dropped. I actually felt sorry for them because they had clearly come for the nice little “Ahhhh” the “And finally some good news” story angle. They said they were sorry to hear the news and mentioned that they had hoped they could take a photo of me jumping for joy. Fuck that.

They eventually had me sitting at my desk with all my drugs alongside me, which I immediately regretted. I wonder what would happened if they went to interview a women who had, say, just been badly beaten up by her boyfriend only to discover that when they arrived they had made up. Their heads would drop and maybe one would suggest, “Hey would you mind knocking her about a bit. We came all this way hoping to take a good photo…”Well you know the old saying: some journalist will never let the truth get in the way of a good story. This was what was printed:

“Kidney patient sits his exams

Plucky law graduate Michael O'Sullivan, aged 26, has enrolled at XXXX Polytechnic for his Law Society finals, just two months after having a kidney transplant.

Michael, of XX, who has an hereditary complaint, polycystic kidneys, had both removed shortly after he graduated in August last year.

His father, John, aged 52, was found to be a suitable donor and in August both underwent operations in an adjoining operating theatres at ****** hospital’s kidney transplant unit.

He said last night: "I feel very well and intend to become a solicitor."

"I have missed so much of the course already I may have to postpone it, but if I do it'll only be for a year."

“I am very lucky. There are some people much worse than me and some people can never have transplants."

(The article went on to mention an 18 month-old child having the kidney of a three-month-old and in the article directly after this followed)

"Dole doctors "

“Nearly 1500 doctors were unemployed in Britain last month”

As you may have spotted the article made no mention whatsoever of the fact that I was going through a very trying time as my kidney could well reject and I would be back on a kidney machine. I flinched when I read the "I feel fine and intend to become a solicitor”. Admittedly during the interview I said I felt fine and when they asked later on what was the purpose of the course I said it was the solicitors' finals course. But the sentence appeared as direct quote with no dots between the two parts. It made me look a pompous idiot. I bet people thought that if I was introduced to them and they asked me how I was I would reply: "I feel fine and intend to become a solicitor”.

Another article appeared in its sister local paper running the same story angle with the headline: “Big law test for kidney patient”

I always found local newspaper headlines intriguing. Especially the way as few words as possible are used to create an interest but it sometimes fails and becomes hilarious.  For instance in some local papers you would get desperate attempts. Something not far away from: “98 year old man dies”, “eleven year old girl goes to school” or “pregnant woman gives birth”. There are the old classics like the one during World War One: “General goes back to front”.  Recently a very popular web site has published a book of the web site pages caricaturing local newspaper stories. The Framley Examiner has news headlines like: “The best kept best kept village sign” 

I also crave stupid notices:”Caution, no warning signs” and “Do not throw stones at this notice”. I actually spotted this one myself: “Danger unconcealed entrance”. Recently the New Scientist magazine has begun to publish them and has found a name for it: semiopthy.

Here are a few they discovered: “Police Club visitors”; “Extra thick baby wipes” (This is a headline as well) and “Touching overhead wires causes instant death! Penalty $200” 

          “Dead man wins case over time off for treatment”. Change of mood required now as this initially just looks like a silly headline. But it comes from an Employment Tribunal case where a man was sacked for having to go on a kidney dialysis. The comparatively new Disability Discrimination Act 1996 allowed him to sue his ex employer for being made redundant after taking time off work to stay alive by attending his dialysis sessions. He died aged 27 of a virus five months after receiving a kidney transplant from his father. His parents carried on the case after his death and it is thought to be the first successful dismissal claim on behalf of a deceased person. His mother said: “People believe that people undergoing dialysis sit by a machine and that’s it they are fine, but there’s far more complications that can arise.”   

“A new beginning” Well after a bit of an early scare; “Shoulder to shoulder, back to back” Well not quite; “Law student sits his exams” and “Big law test for kidney patient”. Well er no actually.

The new innovative treatment worked and the kidney survived but I did not survive on the course and for the second year running I had to jack the course in. I had to sign on and consider what to do. However keeping the kidney came before anything else.

****