ERA-EDTA Congress 2012
The Gift of Life
Darren J. Cawley (Ireland)
Paris, France (25. Mai 2012) - I have had CKD (chronic kidney disease) since I was twenty. I was studying for a degree in Sports & fitness Studies in college in England at that time and had no idea I was having a health problem. I was very enthusiastic about sport competing in soccer, rugby, Gaelic football and I also won provincial titles in boxing and handball. But then while studying I started to get lots of headaches and blurred visions. I put off seeing a doctor as long as I could. When I finally did see a doctor, she did not take it seriously, she just sent me to an optician – my exams were coming up and maybe she thought I was trying to get out of them. The optician, however, sent me straight into hospital. There they discovered my blood pressure was so high – it was bursting the blood vessels in my eyes. They did all the tests and a biopsy. A few days later the doctor came to my bedside and said he was very sorry, but I had end-stage renal failure. I did not know what that was all about and therefore I asked him if I was going to die. He assured me I would not but I would be starting on this strange thing called dialysis!
From then to now I have spent a total of 11 years on dialysis. I had a kidney transplant in the year 2000, but less than 2 years later I lost it due to a BK polyomavirus. I had to have the kidney removed, which was very difficult physically and emotionally. I was just getting a picture of what life could be like – you know, sports, going on holidays, going out with friends – all because I had received the "Gift of Life" – and then I lost it again. It was an incredibly difficult time for me, because I knew that I was unlikely to get another kidney transplant within a short time and that it could take years before that would happen again. It actually took nine years before I got another transplant – nine years of being in the hospital every second day to get dialysis. They put in a fistula in my arm, which is a kind of shortcut between an artery and vein, which provides an access for dialysis with a good blood flow. It worked well over the years, no complaints there, but naturally it grew larger. I still have it now – and this is one of the many problems of being a dialysis patient. For healthy people, the fistula that pops out of your arm looks very strange, so I never wear short-sleeved T-shirts, otherwise people might think you have a weird illness or are doing drugs or something… As a young person you feel ashamed of it, it needs a lot of self-confidence to handle it. But this is only a minor problem with dialysis and after all dialysis was keeping me alive. Another big issue with dialysis is the time it takes: I spent four hours on dialysis every two days, and it took about an hour to get from my house to the hospital and get set up. So it took half a day altogether. The problem is that you do not feel fresh and healthy afterwards. On the contrary, you are tired and worn-out, you need rest. After dialysis I often had to sleep for two or three hours. So on “dialysis days” there was no time for living my life. Even on the other days I did not feel energetic.
Like many other dialysis patients I was often anaemic. My Hb levels were about 9.5 to 10.5 g/dl, which was a problem for me because I was used to being a young active sportsman and now I was totally exhausted after taking exercise. I asked the doctor to give me more epo, which raises the Hb level, but this was often refused as there are set guidelines in place based on a fear of clotting the fistula etc. I often felt I was categorised with the general population of dialysis patients even though I was generally 30 years younger and eager to be active and more productive in my life. So I have often had to live on this “low energy level” all these years. Apart from that problem, there is also the problem of fluid and diet restriction. Because the kidneys do not work and the dialysis is just running for four hours every second day and not like the organ 24 hours a day, you are not allowed to drink as much as you want. So there is no going out for a 'pint' or two, or even drinking water when you a thirsty. This can be really difficult as you'd often feel very thirsty. Socially, I didn't have the choices of others due to the fluid and dietary restrictions. A lot of food was restricted and I often found food quiet bland and unappetising.
But somehow you get used to this life – and this way of life become normal. Being so long on dialysis I had put a lot of things in my life on hold. One of these was my girlfriend. We wanted to get married but I didn't want to be married one day, and then return to dialysis the next! After so long waiting I finally asked her to marry me in Prague while giving a talk there. It was a fabulous occasion but there was still little chance of planning the actual wedding. Amazingly, EXACTLY one month later, after waiting 9 years, I got the call for a transplant. It was a very exciting time but also a very nervous time as it is quiet a big operation. We plan to be married in May 2013. And now I won't have to wake up after the wedding day and tell Aoife “Honey, I am sorry, but I have to leave for the hospital now”. This is not how people normally imagine a romantic honeymoon to start.
The surgery itself was done in Dublin and everything went fine. With the new kidney I was free of dialysis and over the last year we travelled together for the first time without having to get dialysis, or return home after 2 days to my normal hospital visits. It is great and I realised what I had been missing all those years – just booking in spontaneously on a cheap flight and see the world had not been possible for me. If I went on holiday everything had to be planned carefully, you had to contact a dialysis centre abroad and make sure that you could get your dialysis there, and there was always the fear of complications. This limits your personal freedom a lot, in a world that is getting more and more cosmopolitan.
After the transplant I had a few scares, of course. I lost the first kidney due to this BK virus, and two months after the second transplant, doctors told me I had the virus again. I felt devastated. But luckily, medicine had come a big step ahead in these ten years between my first and second transplant – they just changed my tablets and everything turned out fine. I did not have to worry about it again. There were also some funny things. Since I had not had to pass urine for more than nine years, my bladder had shrunk. When the new kidney started to work and produced urine, I had to go to the toilet all the time which was tough for a while, especially at night, as I got very little sleep. This settled down after a while I'm glad to say and now I've learned to control the bladder better. Now I do not have to go to the toilet to much more often than any other person.
I now lead the life of a normal 34-year old person. After the transplant, I could start working more often and it was the first time in my life that I could start thinking about a career. As I was always really keen on sports, and represented Ireland several times at the European Transplant and Dialysis Games, I can now compete with renewed energy, especially with a whopping HB level over 16! That certainly feels good! The transplant has been a real gift of life for me. This is why I go into schools now and talk about living with a long term illness and organ donation. I want to raise awareness of Donor Cards in Ireland – there are thousands of people on dialysis living a kind of “reduced life”. With the number of people on dialysis increasing all the time the need for transplants is more and more vital. Dialysis sustains life but its not the correct solution. I want more and more people to experience the "Gift of Life", for even though life on dialysis can become ordinary, life with a transplant becomes EXTRA-ordinary...
ERA-EDTA Congress 2012, 25.05.2012 (tB).