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- Justina's story - Kidney failure - Dialysis - Gift of life -
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Justina's Story

My name is Justina Wilkinson and I am 47 years of age. I was born with Polycystic Kidney disease, which is a genetic disorder, although it is generally not too serious. I inherited this from my father and his side of the family. I am one of six children and four of us have the disease. Many people suffer from it but do not always show any symptoms until later on in life. I unfortunately started to have symptoms from an early age and by the time I was in my late teens began to show signs of failing health. Thankfully my brother and two sisters did not follow this pattern but appear to be relatively healthy. My health declined quite slowly but I was advised not too have any children due to the serious form of my disease. However nature does not always obey and I found myself pregnant at the age of 26. This was a very worrying time but everything turned out well and I gave birth to a lovely baby girl. Imagine our horror when we found out that she had inherited the disease but again she appears to be very healthy and should not have the problems that I had.

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Kidney Failure

My doctors had told me, that eventually I would need dialysis, as my kidneys would gradually fail. I managed to carry on working full time as a College lecturer but as time went on, I became more and more exhausted and finally in 1996, the doctors told me that it was time for me to go on to dialysis as my kidneys could no longer cope. By this time I was tired all the time, suffered from cramps, stomachs upsets, dry itching skin, sleeplessness and generally could not do anything which involved much physical effort.

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Dialysis

It was agreed that I would undergo Continuous Ambulatory Peritoneal Dialysis (CAPD). This involved having an operation to insert a permanent catheter into my peritoneum, which would act as a sort of kidney. Blood vessels around the peritoneum carry waste products, which would normally be filtered out by the kidneys. Special fluid is introduced into the peritoneum through the catheter and the waste products pass through the peritoneum wall and into the fluid; this is then drained out and replaced with more fluid. I was on CAPD for two years and carried out bag exchanges of two litres of fluid, four times a day. This meant that I could not be away from home or any other place for longer than five hours at a time. It was very restricting because if we went anywhere I would have to carry a great deal of equipment around with me and it had to be a very sterile procedure as infection was never far away. I was very fortunate that I did not catch an infection at all in the two years and the procedure went very well. We did manage to go away a couple of times and I did carry out a bag exchange once, on the Yorks moors and a couple of times in car parks but this demanded much expertise and a great deal of effort. I still managed to work but at times it was a struggle. I had to be on a very restrictive diet as my body could not cope with certain chemicals in food, also fluid was restricted to 1 litre a day or I risked fluid retention and this was dangerous.

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Gift of life

When I started dialysis, I went on the Transplant list and of course tried not to hope too much. My husband volunteered to donate me one of his kidneys and underwent tests to see if this was possible. Unfortunately he turned out to have the wrong blood type but my elder brother Christopher, who has not got Polycystic disease, immediately offered to be tested. The results showed that he was a perfect match and after much emotional discussions we decided to go ahead with the transplant.

On 2 November 1998 one of my brother's kidneys was transplanted into my groin. From the very first, even before I left the operating theatre, the new kidney worked perfectly and over 17 months later is still working as well as ever. The doctors and surgeons were delighted with my progress and I left hospital only a week after the operation. Christopher did not fare quite so well; the operation to remove a kidney is much more invasive than to put one in. In taking out his kidney, it meant the surgeon had to break a rib and this in turn accidentally punctured his lung. He was in a tremendous amount of pain for many months and his recovery was very slow but through all this he never complained or blamed me and was only full of wonderment at how well I was.

The difference to my life was incredible and even now I can't believe how much it has changed me. I can now do anything I want, eat anything I like and drink freely. I sleep extremely well; my skin and hair are in very good condition and I can relax which I found very difficult before. Of course I have to take a large quantity of drugs every day to stop my body rejecting the new kidney but this is a small price to pay for such an incredible difference to my life. I still worry that my kidney might be rejected but chances of this are quite slim, as it was such a good match.

It is a great pity that more people don't donate kidneys to members of their families as it can make so much difference to a person's quality of life. I am so grateful to my brother and love him very much for his selfless act. I could still be living a half-life, dialysing four times a day, dragging myself around to attempt to do what healthy people think nothing of and gradually becoming worse as the months went on.

I hope that anyone reading this case study, will be motivated into either becoming a donor after death or if a member of their family needs a kidney transplant, can find the courage to do what my brother did for me.

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Contact details:

If you have a story about a kidney transplant, which you would like people to know about, or if you require any more information on kidney disease or transplants then e-mail Gerry at Billy.Kidney@sheffield.ac.uk or visit our Links page