My name is Davina and I live with Branchio-Oto Renal Syndrome. This is a genetic condition that affects renal function and hearing. I have twin sisters who also live with this syndrome. My mother was unaware she had the gene until after we were born.
I was born with only one kidney, which stopped growing, and I started dialysis in Nottingham when I was about seven years old. I had an unsuccessful transplant at eight years old and a second about nine months later. This lasted for four years, after initial rejection problems, and I managed to enjoy reasonably good health. However, I had to have the transplant removed after a very bad rejection.
My secondary school education was dominated by dialysis. I started on peritoneal dialysis, where the blood is cleaned using the peritoneum, as I had really good support from my dad and it was easier to fit into my life. Even so, it was hard to keep up with my school work and I did not, initially, get the grades that I needed so I stayed on to do business studies. I had to go on haemodialysis, using an artificial membrane to clean the blood, after problems with my catheter, and I found this very hard in terms of the time needed to be in the renal unit. I also found it really hard to eat. The whole process was much more about being done to than having control over my own treatment. There was a big concentration on being ill.
I had my last transplant in 2001 and immediately noticed the differences in diet and treatment. I can now have food such as bananas and chocolate, and I have to drink two litres of fluid a day which seems a huge amount. I was able to undertake all sorts of new activities. For example, I completed an access to adventure and travel course and achieved the Duke of Edinburgh Gold award. I go horse riding, joined the Girls’ Brigade and attended a mentoring programme. I came to Sheffield in 2002 and achieved my goal of getting to University.
I am now under the Adult Renal Unit at the Northern General Hospital. The care is good there but, it’s not the same atmosphere as on a children’s unit. There is less emphasis on social activities and I miss being able to talk to someone my own age who is living with renal failure. I do appreciate being able to manage my own condition and make decisions about my care. This has been encouraged from an early age. I was helped to give myself EPO injections, to ease anaemia, allowed to decline hormone treatment and given all the information I needed to make the right dietary choices. Today, I am able to have stores of anti-biotics so that when I start with an infection, I can begin treatment immediately. This is better than taking a maintenance dose and shows that the Consultants trust me to use medication responsibly. Oddly enough, some of the junior doctors do not feel confident in my knowledge of my own condition and still like to check my bloods before they prescribe. I’m usually right though!
I recently started an Expert Patient Programme, which is a six week course for anyone with a long term health condition. After the first week, I felt confident enough to go to my GP to request an exercise referral prescription which I am now putting into place. I know from experience that it is important to take control of your condition and I try to make healthy lifestyle choices so that I keep my kidney healthy. I have great support from my family and from the renal unit and I try to remember that there will always be good as well as bad days. The more control you have the more you will be able to do.