XENOTRANSPLANTATION > INFORMATION > SHEET 7

Susan Frade: Transplant Recipient

Like my fellow colleagues who are waiting for a transplant, it doesn't bother me having a pig, horse or human kidney. However, if I was offered a trial xenotransplant, I guess my decision would be a reflection on how ill I was at the time: had I been having problems on dialysis, or waiting for a heart transplant (for which there is no treatment, you just die after x weeks or months) then I would have very little to lose.

Wednesday, 3rd June 1993 started off like any other day, with revision in the library. Even though I had not been feeling well for sometime, never in a million years did I think my GP would tell me that I had kidney failure. At that moment my life came to a crashing halt.

Nothing was important, least of all the exams I had spent the last few months revising for and up until five minutes ago were the only important thing on earth... or so it seemed. But surely it was a mistake. Kidney failure sounds pretty serious really and is the kind of illness you associate with old people, not 23 year olds. Looking back I can't believe how calm I kept: I went home, broke the news to my house mates, rang my mother in London (I was studying in Coventry at the time), had a bath and presented myself at the hospital. One hour later I was plugged onto a haemodialysis machine.

Life on dialysis can best be described as half-living: It's like being alive but with lots of the fun taken out. At first it was a novelty, and entering the renal ward was like entering a new world with lots of new and interesting things to learn and get used to. Dialysis was, without a doubt, a welcome relief and I immediately felt so much better after the first dialysis session, as the toxins and fluid which had been slowly accumulating over the past few weeks were suddenly removed. I literally did feel like a new person.
This novelty however soon wore off and was replaced by the slow realisation that I would be a hospital patient for the rest of my life. Now I was a dialysis patient. Soon, hopefully, I would be a transplant patient. And perhaps some time in the future, if my transplant were to fail, I would be a dialysis patient again. And so it goes on...no discharge for me EVER.
Starting dialysis is all quite daunting really, and in a way you look forward to meeting some fellow patients, someone who can relate to your fears and worries, and can perhaps offer some words of wisdom and hope.

Unfortunately though, those who you first come into contact with are those who are very ill and not coping so well with dialysis. That's why they are in hospital. This, coupled with the fact that people absolutely love to tell you everything that has gone wrong with them since being diagnosed, paints a very grim picture indeed. It seemed all I had to look forward to was dialysis, infections and transplants that would fail after a few months. For the first time life really did seem unfair. Then one of the nurses pointed out to me that there are several patients leading almost normal lives whom I would never meet because they were never in hospital. This was the first glimmer of light at the end of what had become a very long, very dark tunnel, and I was determined to be one of those patients.

Having an illness like kidney failure often leaves me with the feeling that I have lost control over my own body. Although I had decided I wanted to go on peritoneal dialysis, I had no control as to whether my body was more suitable to this type as opposed to haemodialysis. I had no control as to when I would have a transplant; if I would ever have one; if initially successful, how long my new kidney would last; the side effects of long term immunosuppressive drug therapy... There is no doubt that dialysis equals a life of restrictions, the two most obvious being diet and fluid. These vary from person to person, but just to give you an idea, my daily fluid restriction was 500ml (that's roughly one and a half mugs of liquid) - and that was supposed to include fluid in foods (such as soup, ice-cream and yoghurt). For me, the worst restriction of all was that on my freedom. Dialysis certainly took away the spontaneity in life, and daily activities needed to be planned to fit in with the dialysis regime. All in all, one of the most frustrating aspects of dialysis was that it did not matter how well you behaved in terms of following your dialysis regime or diet, it would not mean your transplant came any quicker. It's not like having a bad cold, for example, when you know if you stay in bed for a few days and rest you will invariably get better. Kidney failure does not work like that.

Dialysis brought with it many changes to my life which I initially resented, and then learnt to cope with. Although I had decided that peritoneal dialysis would best fit my lifestyle, I wasn't so keen on having a catheter permanently hanging out of my abdomen. It wasn't so much how it might look to others, but the fact that I might not like the sight of it. And the idea of having a hole directly into your insides - yuk! What if something got in? The idea was really quite revolting, but once the operation had been done, I was pleasantly surprised at how neat and tidy the whole thing looked and actually didn't mind having it. What I did mind though was having to continuously walk around with two litres of fluid sloshing around. Apart from not fitting into any of my trousers any more, on occasions it did feel quite uncomfortable. I hate the fact that long, hot soaks in the bath were out of the question so as to minimise the risk of infection, and even though I had never been a keen swimmer, I now resented the fact that the choice for me to go swimming had been taken away.

Dialysis, however, does not mean that life had to completely stop, and I was determined to make dialysis fit in with my lifestyle and not the other way round. If anything, I was more determined to get on and do as much as possible, probably to prove to myself that I could do as much as any healthy person.

So when I first entered hospital, I told my doctors that I didn't mind what they did, as long as I was well enough to go to the Graduation Ball on the 21st June. They obviously thought I was joking until one of my housemates brought in my ball dress! For my own sanity it was very important to carry on as normal as possible. And so it was for the next eighteen months that I was on dialysis, albeit at a rather slower pace. Most days were okay and some were even excellent, but the longer I was on dialysis, the harder it became to keep my spirits high. Like many other dialysis patients I worked and was able to go away on holiday, and like all dialysis patients I longed to have a transplant.

It was on Thursday 3rd November 1994 that my life changed again - this time with a phone-call from my flat mate telling me that Hammersmith Hospital were trying to contact me. I could hardly believe it, my turn had come. I still remember the rush of adrenaline through my body and I still go all goose pimply thinking about it! I don't really remember much else about the rest of the evening, except that I spent the next ten minutes running up and down the stairs screaming at the top of my voice "Oh my goodness, I've got a kidney!"

I cannot even begin to describe what a difference having a kidney transplant has made to my quality of life - there simply aren't any words that can do this justice. My transplant has restored a sense of well-being that I had just forgotten: quite simply I cannot ever remember feeling this well. It has also given me back complete freedom, a freedom that healthy people take for granted. It literally is amazing and has given me the chance to fulfill the travel plans that I made before falling ill - something I would only have the opportunity to do with a transplant. Never in my wildest dreams did I think that I would be able to spend two months in Borneo, living in the middle of the rainforest and searching for wild orang-utan.

My life today is a far cry from what it was whilst on dialysis, and I truly believe that I am the luckiest person alive. And not just lucky since having the transplant, but lucky whilst on dialysis. For during that time I was always well and surrounded by caring friends and family who would bend over backwards to accommodate me and my dialysis needs. And as we were all to discover, kidney failure affected everyone around me. Going back to the dialysis centre feels strange, and often a sense of guilt builds up: guilt that I am now well and they are not; guilt that I only waited 18 months and some have been waiting 10 years. Imagine waiting for something for 10 years and after that time still not being any the wiser as to whether you will ever get it. I cannot think of anything worse.

I have often asked many of my kidney colleagues if they would have a pig's kidney. Their reply is always the same: they would have anything to make them better and wouldn't mind much from which animal it came. My own views on xenotransplantation are much the same, but perhaps with a little more caution. If animal to human transplants were at the same stage as human to human are today, then I would not have any qualms about having one. Like my fellow colleagues who are waiting for a transplant, it doesn't bother me having a pig, horse or human kidney. However, if I was offered a trial xenotransplant, I guess my decision would be a reflection on how ill I was at the time: had I been having problems on dialysis, or waiting for a heart transplant (for which there is no treatment, you just die after x weeks or months) then I would have very little to lose.