Nick Williams

Nick's Views

Nick's comments and story

July 2000

I was admitted to Warrington General Hospital on July 25 2000. I had been experiencing chest pains (which were actually pulmonary oedema) since the beginning of the month. I distinctly remember a Saturday night at the beginning of July 2000 where I experienced stabbing pains as I drew breath. Clearly those stabbing pains (which I assumed where the symptoms of a chest infection) were the result of excess fluid sitting on my lungs - because my kidneys had failed and were therefore unable to remove that fluid from my body.
Over the first 3 weeks of the month, I felt progressively worse as my perceived 'chest infection' deteriorated.
On the day of the 25th, I was due in Milton Keynes on business. I turned up at the station and my colleagues took one look at me and told me to go straight home. Apparently I was whiter than a pint of milk. I got the train home and struggled out of Runcorn station. I knew at that point, that I was severely ill.
I called Mum and she came over and took me to my Doctor. He told me to go to Casualty and wrote a letter to the hospital asking for a number of tests to be performed on me.
We went to Casualty and they quickly put me in Intensive Care. My blood pressure and other readings indicated there was a problem and as soon as they analysed my blood, they told me I had some sort of kidney problem.
They gave me blood and began to dialyse me straight away. The next morning they told me that they weren't expert enough in Renal Treatment to be able to help me and so were referring me to either Hope Hospital or Royal Liverpool Hospital - whichever had a bed available first.
That afternoon I was taken by ambulance to Hope Hospital Salford and admitted to Ward G3.
I'd been there for about 2 hours and was adjusting to my catheter and other various tubes I had in me, when the House Doctor sat on my bed and said these words to me;
"So Nick, you do realise don't you, that your kidneys have stopped working and have deteriorated to the point where function will not return ?"
I had to admit that no-one had, up to that point, told me that, so I was a little shocked to hear it. However, he then explained the treatments and I realised that many of the things that are important to me, would be possible still, on dialysis.
I went through a lot of haemodialysis for the next month as they cleaned up my blood. There were setbacks - I found myself quite prone to minor infections. Dialysing is difficult and uncomfortable enough without feeling under the weather as well. However the medical staff were all superb and helped me cope throughout.
I had my Tenckhoff inserted in mid August. The operation is quite a bizarre experience because it is performed under local anaesthetic and you can feel your skin and flesh being sliced even though it doesn't actually hurt. After around 2 days, the wound is healed and the discomfort is minor. It also helps to get moving as soon as is possible after the operation.
I was released from hospital on August 23 2000.

"CAPD"

I started CAPD on August Bank Holiday 2000.
In hospital, the doctors and nurses had explained the dialysis choices to me - Haemodialysis or CAPD. I had immediately identified CAPD as the most suitable method for me. It retains my freedom and the fluid and dietary restrictions are less severe. I would not hesitate to recommend CAPD over Haemodialysis - if a patient is offered the choice.
I do an exchange 4 times a day and I use 3 x 3 litre bags (usually 1.36 although occasionally a stronger strength if I feel I have excess fluid). My 4th bag is an Extraneal bag for the overnight dwell.
My first exchange is always done immediately after I get up in the morning. The remaining 3 are then a minimum of 4 hours after each previous one. This means that if I get up at 7 am then I can do my last exchange at 7pm and have the rest of the evening to myself.
I usually do 2 exchanges at work. They have allowed me to use the Medical Room and I have my heater, alcowipes, caps, clamps and other equipment stored there. I think CAPD is the most practical and flexible method of dialysis. There are lots of stories of unusual places where people have done exchanges, here are a list of my most unusual locations; Some people feel that the 4 exchanges per day are restrictive and whilst it's true that you tend to live your life in 4-6 hour bursts (in between exchanges) it is possible to find ways to make them fit into your life. After around 1 year of living with CAPD, I found that they just fit into your life and you adjust to the regime.
I tried the Homechoice machine, but it didn't suit me. I have mixed feelings about this. In one sense, devoting 9 hours per night to it is fairly restrictive - if you know you have to get up for work at 7 am, then it means hooking up at 10pm. On the other hand, it does free you up during the day and the thought of not having those 4 exchanges interrupting the day is definitely appealing.
My advice would be to try it if your Renal Centre can offer you the opportunity. It's your life and you must accept that dialysis one way or another is unavoidable. It's your job and that of your Renal Centre to make that dialysis fit your life as easily as possible.

Peritonitis

Peritonitis is something that seems to go hand-in-hand with CAPD. The risk of getting the infection is seemingly constant and in situations when you get it, it is extremely painful.
In 15 months of dialysis, I had peritonitis 4 times.
The first time I got it was in November 2000, when I inadvertently touched the end of my tube. Within 24 hours I had Peritonitis - you know you have it by looking at your bag which is cloudy. You also get a very severe stomach-ache.
I went to Hope and they gave me a dose of antibiotics which cured me fairly quickly. I contaminated on the Sunday, got the infection on the Monday and was back in work on Wednesday.
The second time I got it was February 2001. I woke early one Saturday morning with severe stomach-ache and went straight to Casualty at Hope Hospital. They confirmed the infection and kept me in G3 for 11 days. I had not contaminated but had picked up the virus through normal course of events. I felt very frustrated because the infection was very bad and yet I hadn't felt I'd done anything to bring it on. You feel different if you know you have contaminated (almost as if it's your own fault) but when you know you did nothing wrong, then it is more difficult to live with.
My third bout of Peritonitis was at the beginning of May 2000 - a recurrence of my February infection. This time it wasn't so bad and I was out of hospital within a day and back at work on the Tuesday (after going into hospital on the Sunday).
My final bout of Peritonitis was August 12 2001 (see later)
Peritonitis doesn't just hurt whilst the infection is present, it also sets you a long way back in your treatment. My experience is that a patient can be fairly delicate in terms of keeping at a level of fitness, strength and well-being. If you keep yourself well, then it is easier to stay at that level of well-being if you continue to do the right things.
If, on the other hand, you are unable to keep exercising and eating the right things - because you have Peritonitis, then the setback in terms of well-being is severe. It becomes difficult to get back to the same level of strength and well-being after an episode of infection.
I personally felt terrible from February through to mid June. By the summer I was a lot better and felt very good until August.

April 2001

Hope Hospital had asked us to consider the possibility of live transplant, right at the very outset of my treatment. I had initially resisted because I had felt it was likely to put the donor at too great a risk.
However, I went to see my eventual transplant surgeon Dr Riad who explained things in a lot more detail. In summary, he explained that a donor would typically not feel any worse once they had healed after surgery, then they did before. He explained that a normal person with 2 fully functioning kidneys can happily live without consequence on just one kidney. In fact plenty of people who do not have 2 fully functioning kidneys live happily without ever realising they are in that situation. There are typically no dietary or physical restrictions that a donor has to live with once their body has adapted to living with just one kidney.
After this discussion, I felt more secure in allowing my family (all of whom wanted to donate) to go forward. I felt reassured that by donating they wouldn't be placing themselves under restrictions they would live to regret.
After the initial blood matching and a discussion with Hope Hospital, it was decided that my Mum should go forward as a candidate for donation.
Hope explained that the next step was that my Mum would go through a series of tests (23 I think) that would assess her physical state and ability to donate.

August 12 2001

The tests were eventually set for the week of 12 August 2001. Mum was admitted to the Medical Investigation Unit for her week of tests (but was allowed home each night).
Ironically I was admitted on the Sunday night to Hope Hospital with my 4th bout of Peritonitis. I was admitted to the Urology Ward (no other beds were available) and I stayed in for 8 days. At least Mum was able to visit me whilst she was in-between her tests. Dad and Helen therefore had 2 wards to visit for that week.

October 5 2001

Mum and I went to see Dr Riad at Manchester Royal Infirmary. He explained that my doctor at Hope had referred Mum and I to him because he felt that Mum was a suitable candidate for donation and that I was in a good enough physical state to accept the kidney.
Dr Riad explained the procedure of what would happen during the operation and the immediate aftermath.
He then picked up a diary and asked us both what date we wanted to go ahead with the operation.
We both felt that we should get it done as soon as was possible so we set the date in his and our diaries - November 13 2001.

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