Alport Syndrome

Alport Syndrome- lifestyle, diet and exercise

People spoke about adopting a healthier lifestyle, particularly to prolong their kidney health, which often included making changes to their diets, and taking up sport and exercise. People adopted different changes depending on how they were affected by Alport Syndrome as well as how much knowledge and information they had been given (see Alport Syndrome: getting information). Some didn’t adopt any particular dietary changes: Jayne, who has no signs or symptoms, didn’t adopt a special diet but had been told generic advice to lead a healthy life and eat a healthy diet. Debra said she didn’t have any dietary restrictions, as her doctor had not given her any guidelines.
Most people spoke about being aware of their salt intake. Salt contains sodium chloride. Diets that are high in sodium can increase blood pressure levels, which put extra stress on the kidneys for people with Alport Syndrome. This can in turn make the heart work harder. Many people said they had cut down their salt intake. Patrick said that he doesn’t follow a particular diet but is careful with his salt as “it's about looking after your kidney essentially”.
People on dialysis were advised by doctors and dietitians to follow a ‘renal diet’ which included reducing the amount they could drink (fluid restriction). However, Alison said this depended on whether someone was doing haemodialysis or peritoneal dialysis. Peritoneal dialysis was perceived to have fewer restrictions. Many said a renal diet was extremely hard to follow at first and several struggled with this because it included reducing or cutting out foods they liked, such as chocolate, dairy, mushrooms, tomatoes and bananas. Most people on dialysis said that this was because they had to avoid potassium and phosphorus-rich foods like these. Many people with kidney disease have to limit their intake of these elements. People discussed how they prepared vegetables by ‘boiling out’ the potassium.
People said that fluid restrictions were sometimes the hardest aspect of having a particular diet on dialysis. Robin said he found only being able to drink about a pint /500ml each day very difficult. Paul said that when he was on holiday abroad, the heat meant that he sweated a lot and could drink more fluid, although his wife Christine felt that this was tricky to manage.
People spoke about their weight and appetite changes while on dialysis. Some people talked about having no appetite and getting nausea and other side effects. A few people said they lost weight because of this. Karen said that on the days she does dialysis, she is really hungry but on the days in between she loses her appetite. She said that when she was doing home dialysis she could barely eat. Others said they struggled with their weight or worried about calorie intake when doing dialysis. Dee said that as she had to avoid tomato based sauces, and instead have creamy based sauces which she felt were “calorie packed”.
Some people who hadn’t experienced any kidney failure or dialysis, said they drank a lot of water. However, there were mixed views on water intake. Dr Rachel Lennon, consultant paediatric nephrologist says with normal renal function, the advice is as for the general population; drink sufficient fluids to maintain good hydration. Michelle said she was keen for her son and daughter to drink enough at school to flush their kidneys out, and said they always had water bottles with them. On the other hand a few people like Donna said they limited their water intake as they thought this was better for their kidneys. However, it is only with late stage chronic kidney disease/dialysis that it is often necessary to restrict fluids.

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.

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