I am going to give you the patient’s perspective. I will tell you what it was all about. A little bit about myself first of all, as you know, basically I have been a nurse all my adult life, I am 63 years old next week and have been a health visitor since 1976. I have been married to John for 41 years now. Amazed after what we have been through that we are still together!

My renal background is that I was diagnosed with renal failure in September 1993, began dialysis in December of that same year, just three months later. A complete shock, because I had been told that I was the lucky one in the family and I did not have renal failure. Was not likely to get it, although my mother had it, my brother also. I was put onto the transplant list in 1994 and I also had to stop working that year because I was just too ill to continue, which was very sad, as I absolutely loved my job. That time I was also told I would be difficult to match.

In early 2000, John and I decided to opt for the live donor programme, and the investigations found that it would be possible; we had the same blood group. However that was on condition that John lost three and a half stone in weight. So the months went by and then he did start to have his tests and then suddenly one day we were called to see Dr Newstead at Leeds, out of the blue, and they had found that retrospective blood test of my blood have found that I had antibodies to John. So, big blow!

Three options were given on that morning, one was to abandon the whole procedure and return to the transplant list which was a bit sick- making as you could say, because I was not anticipating getting one from a cadaver, the second was to find another live donor, and with our medical history and family and the fact that I had three children who might eventually get it, we thought that wasn’t a possibility at all. The third Dr Newstead presented a procedure which had been tried in America in the fairly recent past and we thought we might be the sort of couple who might be able to try it out. So he gave me the research papers, and we took an hour to read the paper together and then we went back and discussed it with him. We decided in that time that the quality of our lives was very poor, we had nothing to lose so lets have a crack at it. I didn’t know about the risks by the way! I have only just found out! So we decided to go ahead.

So we come to the run up to the transplant. This was booked for September 28, 2001, the planned schedule of the drugs the procedures and the plan of action for the three weeks prior to the operation was given to me and at the same time the visit was arranged to the regional blood transfusion unit at Seacroft Hospital in Leeds, where the blood washing was to take place. So I was shown the area that was to happen, I met the staff and they explained the procedure to me. The staff were extremely interested and quite excited about this. So this is a very brief description of the protocol or the plan that Dr Higgins said.

Mine was a lot easier to follow than yours by the way. So the treatment started on the first day with a course of drugs, these of course continued right up to the transplant. Particularly microphenalate. That was one of the main drugs for those of you who have never had a transplant is one of the anti-rejection drugs. Then on the Monday, Wednesday, Friday of the first week I was to undergo four hours of blood washing and then in the afternoon I was to go across town to St James’ for five hours infusion of immune globular. Blood cross matches were done prior to all the blood washing sessions and we found in fact that the antibodies went after the first treatment. However I had the first three treatments and the second week because the antibodies had gone I was given time off for good behaviour, so nothing happened the second week. The third week I was given blood washing on the Monday and the Wednesday and then the operation took place on the Friday. Don’t forget that in between I was having haemodialysis as normal on the Tuesday, the Thursday and Sunday. So things went fine, well sort of. I’ll tell you in a minute! The transplant took place.

The side effects and the general impressions of blood washing, this is possibly the bit you have been waiting for? First of all, the thing I remember most was progressive exhaustion. In our case it was a 60-mile round trip to the hospital and we were away from home on those treatment days for 12 hours. It was like having dialysis every day, because really it feels very much like dialysis. The second was fear! I collapsed during the second treatment, quite a bad collapse and it was a bit like you could have on haemodialysis, but it did feel quite a bit worse really. This meant that the hours of treatment reduced from four to three and a half. I was not given quite the same amount of plasma as they anticipated I would need. The third was cramp, both abdominal and leg. They made me eat when I got to the hospital, although I had already had my big breakfast at home as usual. I did resent that a little but it did seem to help.

After the transplant I think I was exceptionally tired, I felt really guilty, because the nurses are saying “Come on get up”, being a nurse I knew perfectly well I had to move, but I was so tired. As the days went by I did start stirring my stumps. Then I had to have post treatment a week later, because it was part of the plan. Not that I think I necessarily needed it, but they were worried that if I didn’t have it the antibodies may return. I was irrationally upset at having to go back, because I thought I was not progressing. I was going back to Seacroft for this, but in actual fact I did and went and all was well.

The positives. Well, the transplant worked. We didn’t hiccup once, I have never had one hiccup from this kidney from the minute I received it, I have been extremely blessed. Also I had total confidence in the staff and the team. I was kept informed at every stage and met lots of members of the team, not just the surgeons and the physicians, but the biochemists and even the renal pharmacists. Long talks, lots of reassurance, a lot of encouragement and there was a lot of excitement going on at least going on also.

Life has returned to normal, I am enjoying retirement now whereas it was forced upon me and John retired about six months later, so we could spend what we thought would be a limited time together. We are enjoying our retirement, we are fortunate enough to have a narrow boat, so we take to the water in the summer, which was not possible when we are tied to the dialysis regime. We now have five small grandchildren, so I am able to enjoy babies in another way from health visiting, because we are now two doting grandparents as you can imagine with the little ones. I have had tremendous support from John throughout all of this, even up to the gift of the kidney. He just kept me going through the really bad times. So many of you are still going through this and those of you who can remember it, it is pretty rough isn’t it? I have been freed from all that, and I am extremely fortunate in that. John just says “ Hanging about, taking me to Leeds, hanging about for five hours, four hours in the morning, taking me across town for five hours in the afternoon. Taking me home for those weeks before the transplant took his mind off what he was going to go through”.

So that was my impressions of blood washing; basically there is not a lot different to dialysis, but it worked for us. If anybody offers you it, go for it!



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