Alport Syndrome- lifestyle, diet and exercise
The recommendations for alcohol consumption for those with Alport Syndrome are in line with national guidelines. However, Dr Lennon says that there is the additional consideration of medication and possible interactions with this. Regularly drinking alcohol above recommended limits can raise blood pressure over time (see Resources). Patrick thought it wasn’t a good idea to drink too much alcohol and Michelle said her daughter had the odd drink but knew that drinking too much wasn’t good for her kidneys. Others spoke about enjoying alcohol moderately. Angela said that dialysis worked well for her, and so she felt she was able to still have a drink containing alcohol within her fluid restriction. Others said that they didn’t mind about needing to avoid alcohol. A few spoke about the changes in dietary advice they had been given or had noticed changes in general attitudes over the years. Mary and Phillip said that many people these days have different dietary preferences but back when Anthony was a teenager this wasn’t commonplace, and so his diet seemed more restrictive and isolating. They felt that having a renal diet today seemed more socially acceptable. Sport and exercise
Many people knew that healthy lifestyles involve sport or other forms of exercise. Some people changed from one sport to another after transplant to avoid contact sports like rugby, but overall a variety of different types of exercise were enjoyed including canoeing, football, korfball, hockey, going to the gym, walking, swimming and running. People did exercise for different reasons and at different stages in their lives. Sport was enjoyed purely for fun and relaxation, but other people started exercising because they knew it was good for their heart and kidneys. People were conscious of wanting to do more exercise but struggled to do it. Some sports were harder to do with symptoms of Alport Syndrome than others: football and other team sports played outside could be especially difficult for those with hearing loss. Patrick said that hearing aids “crackle” when it is windy which makes outdoor sports like rugby challenging. Anthony found playing football difficult because he couldn’t hear the other players on the pitch.
A few people said that after their transplant they were very aware of their bodies and worried about injuries to their new kidney. Richard X had to give up rugby after his transplant, as he wasn’t allowed to do contact sports. He also put on a lot of weight due to the steroids. However, he is now training for duathlons and triathlons. Several people had taken up a new form or exercise after a kidney transplant, for example Alison had taken up running and also enjoys hill walking.
Before getting a transplant some people found they didn’t have enough energy for some forms of sport or exercise. Before her transplant Angela didn’t have enough energy for a full game of tennis. Others felt certain sports posed a specific risk to them; Alison was put off water sports on holiday because she had to cover her dialysis tube with a pouch which came off when she went swimming, and was concerned about getting peritonitis.
As well as doing sport to improve their kidney health, some people said that sport was important for their well-being. Several people mentioned taking part in the Transplant Games which is a sporting event that takes place every year in a different UK city. Although Mariam wasn’t into sport anymore, when she was a teenager she was pleased to have won a bronze medal for swimming at the Transplant Games. Michael Y said his mum regularly took part in the Transplant Games and Richard X said he used to take part every year. Sport was important to many young people because it introduced them to new people and meant they could share experiences.