Alport Syndrome

Alport Syndrome and kidney function

Kidney function was commonly talked about as Alport Syndrome is characterised by progressive loss of kidney function. Michael X felt that “it's the renal failure that affects family life to a devastating degree”. This varied considerably among those we interviewed. Jayne and Michelle have no or few symptoms and their kidney function is deemed normal. Deborah, Lucy and Emma have very few symptoms and their kidney function is managed by blood pressure medication. Similarly Patrick who has lost some of his hearing, says that his medication “decreases pressure” on his kidneys. He hopes to avoid dialysis although says that having a transplant is “pretty certain” in the future. Several people had transplanted kidneys. Cynthia was on her third transplant and one of her kidneys had lasted twenty years.
Some
 people had experienced tests on their kidney such as a biopsy or ultrasound. Michelle’s daughter had a kidney biopsy and blood tests, and Alan had a biopsy when he was three years old. Alison had a kidney biopsy which indicated she was in the early stages of renal failure. Sometimes a biopsy led to a diagnosis of Alport Syndrome.
The people who had experienced significant loss of kidney function and renal failure described this in different ways. For Diane, it was a “slow downhill” so she didn’t notice a dramatic shift in her health. Richard Y was diagnosed with Alport Syndrome in his early 20s but it came as a massive shock to be told he had renal failure ten years later because he had been told that it would be much later. Cynthia said she experienced renal failure when she was twenty four and had only been married six months.
Some people had symptoms leading up to their kidney failure. When Robin was on a business trip he became very unwell, dehydrated and could barely walk. It was then that doctors discovered he was in the late stages of renal failure. Steve says that he put down the tiredness and cramps he had been experiencing to having a new-born baby, when in fact he had renal failure with six percent kidney function. Dee said that she hadn’t really experienced many symptoms leading up to her renal failure, aside from tiredness. Others reported being sick due to high levels of toxins and urea in their system.
People said that their kidney function could be affected when they were ill with a virus or cold and they sometimes noticed more blood in their urine. Amanda said when her son was unwell recently, his urine sample results changed and kidney function dropped and returned back to normal when he was better. Debra was told that she had a risk of losing some kidney function during pregnancy which may or may not return. When Donna contracted Hepatitis E her kidney function dropped to 30%. She believes that leading a healthy lifestyle has helped to increase her kidney function back up to fifty percent. For Karen, getting ill with pancreatitis sped up her kidney failure.

People described their kidney function in percentages, or sometimes referred to their eGFR or creatinine levels (estimated glomerular filtration rate and creatinine levels in the blood both indicate kidney function). Classifications usually used by doctors now are based on Chronic Kidney Disease staging (CKD 1-5) with CKD 5 being referred to as end stage kidney disease. Amanda said her kidney function was “sitting at 30%” whilst her son’s is at 70-80%. Debra’s kidney function was “about 67%, normally” which the doctors told her most of, “the general public could be functioning at about.” People often spoke about their kidney function in relation to dialysis and transplantation. Diane said her kidney function was 10% before her transplant. For Richard Y his kidney function was 8% before dialysis. Dee’s was 7% before dialysis which is CKD 5.
People spoke about how they tried to extend the life of their kidneys through having a healthy lifestyle or diet. Donna, Jago and Wilf all felt that sport and diet were very important in helping their kidney function. Steve said he looked after himself and also didn’t drink alcohol anymore. Sarah and Katie mentioned that doctors had said to avoid putting pressure on their kidneys and avoid activities like deep sea diving. Kevin wondered whether the appointments he missed when he was in his 20s might have given him more information about his declining kidney function, and whether this knowledge might have “bought me a year”. People also spoke about hope for future research and medical advances, in particular the development of artificial kidneys.

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