Update: September 2005.
Isn't it funny how things can turn around so quickly; how things can get better almost as quickly as they went wrong in the first place? On the 16 September 2004 I remember waking up and feeling happy - not well immediately, but happy!
In June 2004, I was living in Aberdeen, I had qualified as a secondary school maths teacher, I had walked Ben Nevis, I went on a climbing/walking holiday in the Dolomites (the mountain range in the North of Italy around the Lake District) and was riding again almost everyday and training problem horses. But I was becoming increasingly fed up with struggling with everyday life and the oedema was so bad that my feet would swell either side of a strap on my shoe. I felt fat (the steroids had given me a moon-face) and miserable and no one could understand.
My blood tests were getting worse and worse (kidney function is measured using creatinine - amongst other things - a healthy creatinine level is around 100, when I was first diagnosed in 1999 it was 188, and in September 2004 it reached 1000) and my pill box was getting larger and larger. I was taking pills to boost iron, pills to shut down the immune system, pills to prevent me absorbing this and pills to balance pills (at one point I was taking over 40 pills a day!). I then had to follow a low potassium, low phosphate, and low salt diet. It was impossible; you know when you are feeling down and you eat some chocolate - well that has potassium and phosphate - can't do that! No bananas, no chocolate, no potatoes (unless they have been boiled in plenty of water and the water thrown away), no vegetables (unless boiled to death and the water thrown away), no chocolate, no fruit flavoured sweets, very little dairy products, and did I mention no chocolate? Well, you see what I mean.
At the August Bank Holiday 2004, I competed in the Scottish Championships for Endurance Riding, riding a friend's horse, Ria, and we came 4th in our group. It was a brilliant weekend and a happy memory that had to last for quite a while.
I knew that, due to my worsening health, I had to move back to my parents' home in Surrey. And so on the last day of August I moved back. We all knew the transplant was imminent, however instead of joining the donor list we had opted for live-related transplant. Tony (my dad) was going to donate one of his living kidneys to me. If you are going to go down the living transplant route, you have to think about your family / friends in a way that feels very callous. Transplants can last up to 30 years however the average is 15, so in 15 years, whose kidneys are likely to be in better shape? So for me, knowing that in 15 years my brother will only be 37 meant I keep his 'spare kidney' as a reserve.
A couple of days after moving back, at a clinic they told us that Tony's work-up was going well and that we should be ready to do the transplant before the New Year. That night the clinic called asking me to come back up the next morning, things had taken a dramatic turn for the worse. They took more blood and told me that they were going to book me in to have a Peritoneal Dialysis (PD) catheter put in. This was the start of dialysis! I had just turned 24!! Suddenly in this incredible crisis, my brain switched my heart off and I thought really rationally - I didn't cry or scream, just calmly booked it into my diary. As soon as I got home I forced my family to go out to celebrate the beginning of taking action to get me better - it may seem like a strange time to celebrate, but I didn't fancy the alternatives much!
I had discussed the dialysis options with a doctor when I didn't think I needed to go on it, let me summarise my thoughts now. PD - there is a permanent tube that goes right into your middle, you have to clean it yourself and look after it yourself. This is good from an independent point of view, but think carefully about your house - are you going to be able to keep things sterile when you need, how easy is it to get from the nearest sink to your bedroom without touching anything with your hands? Also if, like me you are on an overnight bag, it takes 40 minutes to set up before you can go to bed and then you have to be in bed for 10 hours (ish). I also had one to do during the day, you are constantly thinking about your next dialysis session. Haemodialysis - you have to go to a unit 3 times a week for 4 hours and you cannot move off the bed or chair, you do get to watch tv (usually) and catch up on sleep. If you are on haemo long term then you need a fistula, and most people with them agree that they are ugly (most people who understand what they are think they are like bravery medals!). You do get days off and there are no permanent tubes.
I know PD works for some people but, as soon as the tube went in I felt very unwell. Three weeks later they took it back out as I had peritonitis - an extremely sore infection. A date was finally settled for the transplant of 16th November 2004. I still needed dialysis and so I had another catheter put into my shoulder that bent down into a main blood vessel in my neck. This was done under a local anaesthetic and I was so scared, they dosed me up with sedative and I forgot the whole thing - sedative is one of the best inventions in hospital. I called the contraption "my bells" and I could even have a shower with them, if I was adequately waterproofed. I started on haemodialysis and at first it wiped me out, but I did get used to it and it became easy (looking back - this is a relative term). It meant that I had to sit attached to a machine for 4 hours at a time several times a week but it meant that I got days off!! Normally to have Haemodialysis, you have to have a fistula put in, they merge a vein and artery to get strong enough blood flow, but there wasn't time before the operation for me.
Monday November 15th came along pretty quickly, my family and I went for a celebratory meal and Tuesday morning Tony was wheeled down to the operating theatre shouting "I didn't agree to do this" (told you he was a joker). I was terrified because during the education you are told what to expect when you wake up - tubes in your neck, drains, scars, dressing, catheter and at least one drip full of morphine. But when I woke up none of that mattered - I woke up feeling happy! I sung to the porter all the way up from the recovery room.
Tony got out of hospital 48 hours after the operation; I still think that is amazing! And I left four days after him. It took me 6 days to walk well enough to be allowed out of hospital! People can say what they like about the NHS but I really think what they have done for me is spectacular and I cannot express the incredible difference it has made to my life.
My transplant was not the easiest as I had been on blood thinners but it seemed to be very well. The week before Christmas there were complications, my kidney function rose suddenly and I was admitted for rejection. Thankfully the tests showed it was not rejection but a lymphocyte pressing on the new kidney (his name is Kevin by the way) and so that had to be drained in another operation. I also had to change pills, but this all shows there are ways and means for these things and there are often alternatives.
Since then things have been terrific, I bought my first horse, went on holiday to Oman, got a job (I had the interview 4 months after T-day) and things are really looking up. Kevin and I have our one year anniversary coming up in November and to celebrate we are having a big party with Scottish country dancing! Now I just need to shift the weight that I put on when I was taking a high dose of steroids - I wonder how I will do that. Oh yeah, by doing all the things I love; riding, snowboarding, playing football, and generally being young.