Perceptions

Greta Read’s experience of dialysis and a transplant from her Brother

Despite knowing from the age of 21 that my kidneys could fail it was still devastating when, at the age of 42 and with 2 young children, I was told that I would be on dialysis within a year - particularly when not many months previously I had been given a much more favourable prognosis. At least, I suppose, I had the time to get used to the idea.

I searched for any information I could and logged onto the Internet, but there was very little on it at that time. However, I did come up with one gem which was a book by Professor Stuart Cameron called ‘Kidney Failure - the Facts’. This book saw me through. It gave me the information I required as and when I required it. First I would only read about kidney failure and its effects. But as I got more and more tired I started to dip into dialysis. I could not bear the idea of a fistula, required for haemodialysis but I also could not bear to see the photo of the peritoneal dialysis catheter in someone’s stomach. But as I got closer to End Stage Renal Failure and I understood that all this really did apply to me and that it was all inevitable I could even look at those photos.

By now I was suffering from the effects of kidney failure and was more tired than usual because I was also suffering from reasonably severe anaemia. But it was through Prof Cameron’s book that I first learnt about EPO, a hormone replacement which increases the red cell count. I was shown, by my clinic nurse, how to inject EPO into an orange and then into myself and I couldn’t believe how easy it was. The thrice weekly injections made a great difference to my life too.

In August 1997 I had been put on the Kidney Transplant list, basically because I had asked to go on it and show that I was committed to receiving a transplant at this early stage. On Christmas Eve, 1997 we had the long awaited phone call. We rushed the 35 miles into St Mary’s, Paddington but unfortunately, although the kidney was a very good match for me, it had some damage and, as I was comparatively well, the Consultant recommended that I should wait for one in better condition. I agreed and we left the ward. It was a very strange anticlimax. It was lucky, I suppose, that it was Christmas and I had the children to think of instead of myself.

At this time I was having hospital appointments every six weeks to check on my creatinine level. I found it difficult not to live from one appointment to the other, and the awful trepidation of not knowing when the Consultant was going to say that dialysis had become necessary was at times tough. But I kept reading as much as I could so that I was never surprised or worried by what he might say. I also found that having a certain amount of information was useful in that I could ask the Consultant questions about my particular condition. Much as I cannot fault the treatment that I received or criticise the staff, who without exception were extremely caring, only a certain amount of information was given. By asking pertinent questions I came to understand even more - the questions were always freely answered. So, in August 1998, my kidneys finally failed. I had deteriorated very suddenly and I felt so awful and so ill that the news that I would have to go on dialysis was almost welcome, as surely I would feel better on dialysis. Within days I was on the Renal Ward that I came to know so well to have the once dreaded catheter put in.

For me, the decision to have CAPD as opposed to Haemodialysis was an easy one. I had read that the whole procedure is easier on the entire body than haemo and also you are not restricted in your life by having to visit the hospital three times a week for at least 4 hours a time. I liked the idea of being, to some extent, independent. I had also seen haemodialysis patients when I visited the clinic. They all looked so ill and I did not want to be that ill. I considered that I only had renal failure, I wasn’t ill.

The kindness and support that I was given in the CAPD clinic during my training for the Peritoneal Dialysis was amazing, I wonder if these people know the difference they make. It wasn’t too easy at first, but I was told that I was one of their best patients (I am convinced they say that to everyone) and I was duly very proud of myself. After about a week I was shown how to do it myself at home and I began the peritoneal dialysis routine. It wasn’t too bad. Firstly, you have to accept it as an inevitability and then get on with it. It took about half an hour each exchange and I had to do four of them a day. It sounds a lot but the timing is fairly flexible. My stomach was slightly distended but, since I had lost a considerable amount of weight and had never been blessed with great stomach muscles anyway, no-one was aware that I was carrying anything like the 2 litres in my peritoneum. I carried on injecting the EPO and, although I had to rely on my husband for more things than I would have wanted to, life really wasn’t too bad. We even got a rates rebate for all the dialysis fluid that I had to store! A useful bit of information I got from the NKF!

When I had first heard that I was going to have to go on dialysis all three of my brothers had offered me a kidney. I told them all the same thing - I thought it wrong to take a healthy kidney and give it to someone who was ill with no guarantee of success at the end of it. At the time they seemed to accept my position but my middle brother continued to bring up the subject. I found out he had a different blood group to me and gave him the go-ahead to be tested because I was told by a Renal Sister that it was very unlikely that he could be compatible match. Wrong! The result came back as a 6/6 match, as close as you can get. My principles suddenly changed.

Brian, my brother, then had to come to St Mary’s from Nottingham several times for tests to make sure he was fit and healthy (and did not have a kidney condition!) and we were given a date for the operation. He too looked for as much information as possible and was even in contact by email with the surgeon who was going to perform his operation. He was also seen by an independent doctor, who was a Paediatrician, who made sure he was fully aware of what he was undertaking and was also not under any pressure to do so. For my part, I kept telling Brian that he could pull out at any time. My husband similarly kept telling me to shut up!

Our operation date was changed once, which was quite stressful, but I was admitted on the Tuesday before the next operation date and Brian was admitted the following day. He had to endure one last unpleasant test and then we had the final go-ahead.

The night before the operation we were told that instead of the two operations being done simultaneously because there was a shortage of operating theatres Brian would be operated on first, the kidney would be held in storage for 45 minutes and then I would be operated on. Brian refused, quite rightly, on the grounds that he wanted the kidney and me to have the best possible chance, and for the kidney to be in storage for any period would reduce the survival and longevity of the kidney. We were given a new operation date for the following week but “miraculously” another vacant theatre was found and it was back to plan ‘A’ for the following day. Patients definitely have the power to change some things if they have enough information to understand what is going to happen to them and are prepared to stand their ground when faced with NHS bureaucracy.

The following morning we were both wheeled down to surgery at the same time. I was taken into theatre first and saying goodbye to Brian was bizarre to say the least. I think I said ‘Thanks’ but whatever it was that I said it was insufficient for what I felt.

The donor’s operation is worse for a few reasons: firstly, the operation for the donor is more invasive, the kidney is well protected in the back whilst it is put into the donor just above the groin: secondly, the donor is well and becomes ill because of the operation whilst the recipient is a sick person looking forward to being better; and thirdly, a person gets used to not being well which makes it easier to cope with.

Our recovery was in the same ward and we were in facing beds. Not easy. But Brian was marvellous and did not make a mountain of his pain or problems, which I am sure I would have done in his position. We had few problems and Brian was discharged within 5 days and I was discharged after 12 days due to a minor problem (common in Peritoneal Dialysis patients).

Initially I had to visit the Transplant Clinic 3 times a week but after a year that has been reduced to once every six weeks. The care I have been given has been excellent, and the doctors and Consultants are always willing to listen to my view. I recently suggested that I would like my steroids reduced and, after due consideration, they agreed.

I am a firm believer that we are all stronger than we think ourselves to be. Five years ago I would never have believed that I could have come through this time at all - never mind having come through a stronger person because of it. Obviously, there is a cost for having become well again. I have to take quite a few pills a day but that has become merely a matter of routine and not a problem. Of course, those same pills cause me side effects, some of which will not be apparent for some time. I have also put on quite a bit of weight because of the steroids and my face is a little fuller but, quite frankly, I was looking ’a little gaunt’ as my mother had so caringly put it, so it’s done no harm. My hands shake a little due to the immunosuppressants and I am having a problem with my body image due to the weight gain but I only need to lose 5kgs, so that shouldn’t be too hard. (Should it?).

Yes, all the changes take some getting used to, not least the changes in relationships. My husband was absolutely fantastic during my illness but he now finds it a little difficult to let go of control . I think (and hope) my children have suffered little. Children are adaptable and accepting of situations and if anything they are both now more caring and understanding of people’s weaknesses. No bad thing for boys.

My brother is extremely well and I lead a normal life again, albeit taking a lot of pills. I have seen the good side of most people and certainly, since my kidneys have failed, the good side of the NHS. I consider myself extremely lucky; I’ve only really had one illness to cope with, I’ve got my 2 children and was supported by a loving husband throughout my illness. I was also on dialysis for only 7 months before I got a perfect match from my brother, Brian. I know that this kidney’s life is finite but given the luck I have had so far I fully expect it to last for a good few years and I am determined to enjoy it while it does last. Thank you Brian.

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