Paul: I now enjoy a full and active life

Paul Hinkins received a kidney through the paired/pooled kidney transplant scheme, which was made possible when the law changed under the Human Tissue Act in 2006.

Sometimes someone waiting for a kidney will know someone who is willing to donate one, but incompatibility in blood group or tissue type will mean that the donor’s kidney can’t be transplanted. The paired/pooled scheme is a national scheme into which donor-recipient pairs are registered, to be matched up with one or two other such couples. Each transplant “exchange” involves four people, made up of two pairs, or six people, made up of three pairs. One person in each pair is waiting for a kidney transplant and the other wants to give their partner a kidney, but is not a good enough match. He or she therefore volunteers to give a kidney to a member of a similar pair, in return for a kidney for his or her partner.

The pairs could be married couples, unmarried couples, two relatives or two friends.

Paul describes what a difference it made to his life.

After my first kidney transplant, which had been given to me by my wife, began to fail in 2008, and I was heading towards dialysis treatment, my mother-in-law decided to put herself forward as a possible donor. This was a humbling experience. I was not used to this kind of self-sacrifice, for my benefit.

Tests were carried out in the normal way for living donation, but as time went on it became clear that a direct donation was not going to be possible, because after my first transplant I had produced antibodies in my blood against my mother-in-law’s tissue type. This made us incompatible with each other. But as I had found before, the team at my transplant centre managed to pull a rabbit out of the hat and started to talk about the paired/pooled donor scheme. Yet another lifeline for me was appearing. I do not mind admitting that life on dialysis was something that I dreaded, and to this day my feelings remain the same. I had received my first kidney transplant before starting dialysis and so I had never experienced what it was like.

Once the paired/pooled scheme was explained, my initial question of “why would someone do this?” was replaced by the realisation that the scheme had enormous benefits. Four people would directly benefit from the process, and many other family members and friends would see someone they cared for return to a more normal life.

Further tests were performed before my details were put into the paired/pooled matching scheme. An anxious time ensued before the results were known, and on that initial run I was not matched. We all felt seriously disappointed, including the transplant team. It was a difficult time for me as I was between jobs and had to postpone starting dialysis until I had settled into a new job. The second run, approximately three months later, was the same story: no match. This was again a massive let-down, as I knew my wellbeing was deteriorating, and dialysis loomed. The positive side at this point was that I had joined a company that, as I was soon to find out, was very understanding of my plight and accommodated all the necessary visits to hospital without question.

I postponed dialysis as long as I could, against medical advice, for a number of reasons and subsequently suffered health-wise. In January 2009 the news we had all been waiting for came through: a pooled donor had been found! The relief and, dare I say it, the joy was incredible for all.

The time when I had to start dialysis came during February 2009, and, unfortunately for me, this period was fraught with further drama – a story for another time! But the knowledge that a transplant was coming was sustenance enough to get me through.

My transplantation took place in April 2009, and for three months everything was perfect. As for many patients living with a transplant, life has its challenges, and I have had some health problems associated with the medicines that I need to take to prevent rejection of my transplant. It has not all been plain sailing, and it can be a bit of a balancing act at times. Despite this, I have faith in the team looking after me, and I enjoy a full and active life.

Though the patient must still make many decisions to ensure that his or her family can cope and see the light at the end of the tunnel in the same way that the patient does, the paired/pooled donor scheme is a great innovation for kidney patients.