Richard X
Richard X was diagnosed with X-linked Alport Syndrome at the age of 9. He’s had two kidney transplants to date. He’s had partial hearing loss, but feels that Alport Syndrome doesn’t affect him in his day-to-day life.
Richard X was diagnosed with X-linked Alport Syndrome when he was 9, but wasn’t fully aware of the implications on his health until his parents explained it to him at the age of 15. He developed partial hearing loss as a child. Despite being aware that he had kidney problems, Richard X was shocked when he learnt that at some point in his life his kidneys would fail and he would need a transplant.
Richard X reached the final stage of renal failure when he was 21. He avoided having to go on dialysis because he received a kidney from his father. The process of his operation was broadcast by a national television channel. Richard X was happy to share his experiences on television, and was glad to see organ transplantation getting more publicity.
Richard X felt immediately better after the operation. However, he thought that the steroid he was prescribed made him moodier, and that the immunosuppressant made him more sick in the long run. He also felt that his social life at university was restricted after the transplantation: playing rugby, which used to be a major part of his life on campus, was out of the question as Richard had to avoid contact sports. He also put on weight because of the steroids he was taking, and it took him two years to get back into shape.
Richard X experienced the first symptoms of rejection three years after his operation. He was working as a primary school teacher at the time, but his continuing kidney problems meant he had to go part-time, and then later changed to an office job. When his kidneys failed the second time, Richard went on hospital dialysis three times a week for a year. Even though his dialysis schedule required him to go to a renal unit in a different city for a while, ultimately, Richard felt relieved because he believed it would make him feel better. He received his second kidney transplant from his mother as donor. This time it took Richard longer to recover, and he experienced more pain at the incision.
Richard X celebrated the 11th anniversary of his second kidney this year. Other than the medication and the occasional hospital check-ups, he feels that his day-to-day life is not affected by his transplant. He experienced one episode of kidney infection, and he had his first transplanted kidney removed recently. Richard was working full-time throughout, and he is grateful that his employers were flexible enough to let him work from home during his recovery period. He has also taken part in genetic testing. His daughter is a carrier, and his son doesn’t carry the Alport gene. He intends to talk with his daughter about the condition in depth once she is older.
Richard X’s message for health professionals is to listen to their patients, because it is the patient who knows how their body is affected. Similarly, Richard would like to let newly diagnosed people know that Alport Syndrome doesn’t have to be a life threatening condition. He would urge people to stay positive and to make sure they get the right information. Finally, Richard would like to see support networks providing more practical information for people who are at later stages of their diagnosis, and he would like to receive more practical advice on acquiring hearing aids.