Lesley was diagnosed with chronic kidney disease after developing swollen legs, nausea and loss of appetite. She feels her GPs have been unwilling to discuss her condition and she has had to ask for periodic checks of her kidney function.
Lesley has been living with fibromyalgia, osteoarthritis, and ankylosing spondylitis for some years, which together cause her considerable pain. A pain killing drug she used to take caused a problem with her kidneys. After developing swelling in her legs, nausea and loss of appetite, she had blood tests done and was diagnosed with chronic kidney disease (CKD) stage 3. She was told the diagnosis in a letter from her GP, was worried, so went back to see him to discuss it. She declined an offer of medication, saying she would like to find out more about the condition and how she could manage it herself. Some months later she wanted to discuss it again with the GP but the one who had diagnosed her had left the practice, so she consulted a different doctor, who seemed less willing to discuss her problems; they had a disagreement and she walked out. She later consulted a third GP at the same practice to ask for a repeat blood test to check her kidney function. She has since had her kidney function checked several times but each time she has had to ask for the test to be done herself.
She feels she has received very little help with her kidney problem from the GPs. They have given her very little information about the condition or how she could help herself to manage it. She looked for information about kidney disease on the internet and found that cutting out certain foods could relieve symptoms. She has noticed a definite improvement in her symptoms since changing her diet. Although doctors say that people don’t usually have symptoms of kidney disease when it is in stage 3, Lesley experienced symptoms before her diagnosis and has continued to have symptoms since that she attributes to her kidney condition. Her symptoms include: swelling (oedema) of the legs and feet; breathlessness (but she also has asthma); infrequent urination; frothy urine and/or nausea after eating certain foods; loss of appetite; tiredness, particularly after meals; restless leg syndrome after consuming carbonated drinks; itchy skin; and fuzzy-headedness. Lesley has also recently been diagnosed as having pernicious anaemia and deficiencies in vitamins B12 and D, for which she is receiving treatment. She has also had some polyps removed from her bowel.
Lesley has recently moved house and registered with a different general medical practice. She met her new GP for the first time yesterday when she consulted over a particularly bad episode of swelling in one leg. The doctor suspected an infection and prescribed medication. He also prescribed tablets to lower her cholesterol which she hasn’t started yet. At this introductory meeting with her new doctor, Lesley didn’t attempt to discuss her kidney problems in detail but hopes to do so in the future if the doctor appears receptive.
Lesley would like to have her kidney function checked regularly twice a year without having to ask for it, and to have access to someone with whom she can discuss her symptoms and how to manage them. She did once ask for a referral to a dietician but the one she saw didn’t seem to know as much as she did about what foods may help or hinder kidney function. She also looked into the possibility of consulting a specialist kidney doctor but learned that she needed a referral from a GP, so hasn’t yet asked for this.