Justine
Justine was diagnosed with IgA nephropathy (inflammation of the kidneys) while having an eye condition investigated in 2011. After being monitored at the renal unit for 2 year she now has 4-monthly checks at the GP surgery and her kidney function has remained stable. She also has a heart murmur and takes blood pressure medication.
Justine had her kidney problem diagnosed in the course of investigating an eye inflammation which kept recurring despite being treated with steroid eye drops. After the third episode she had blood tests and x-rays done at the local eye hospital, which showed that she had blood in her urine. She was referred to the renal clinic for further investigations and was worried that there might be something seriously wrong. She had a biopsy taken from her kidney via a long needle guided by ultrasound, after which she had to lie still for six hours to avoid a bleed at the biopsy site. She felt bruised and stiff afterwards and was advised to avoid heavy lifting, so she took two weeks off work to recover. Two weeks later she returned to hospital for the results and was told she had IgA nephropathy an inflammation of the kidneys. She was put on medication to lower her blood pressure and had blood and urine tests every six months at the renal clinic for the next 2 years. She has since been transferred to the care of her GP and has a check-up every four months.
Meanwhile Justine’s eye inflammation has not gone away and she attends the eye hospital every two months for a check-up, for which she has to take a day off work because they put drops in her eye which dilate the pupil and the effects lasts several hours during which time she is not allowed to drive. She still takes steroid eye drops and, as they cause the pressure in her eye to increase, she also has to take another drop to counteract that. She takes one drop of each per day as part of her getting up in the morning routine, when she also takes her blood pressure medication. She recently tried stopping the eye drops but the inflammation returned. She has also developed a cataract as a side effect of the steroid eye drops. She has been offered another medication for this but it, too, has unwanted side effects so she prefers to leave it alone for now and have the lens replaced if her vision should get worse.
A few months ago Justine started feeling dizzy and nauseous after starting on a new medication to lower her blood pressure (nifedipine, brand name Coracten). The GP changed her blood pressure medication and sent her for a heart scan that showed that she has a heart murmur (aortic incompetence). She will have a repeat scan every two years to check whether that is worsening. She feels fine but has been told to see her GP if she develops breathlessness.
Although at first Justine was disappointed at having to take medication at her age, she has since accepted it because she feels well and it hasn’t stopped her doing anything. Of her various health problems the eye condition currently has the most impact on her life, although on reflection she thinks that in some ways her heart and kidney problems might be more important. She has not been given any specific lifestyle advice by her doctors but is keen to look after her health. After her kidney condition was diagnosed she looked for information about it on the internet to find out whether there was anything she could do to help herself. This enabled her to better understand the link between kidney function and blood pressure, and as a result she became determined to keep it under control. She hopes that the amount of physical activity she does at work will postpone any worsening of her heart murmur. With her GP’s blessing she also plans to resume her running hobby, which she stopped after learning about her heart murmur. She tries to eat more healthily than in the past and has increased her consumption of vegetables which has also helped her to lose weight.
Justine monitors her blood pressure at home every week but the new blood pressure tablets (losartan and ramipril) have made it fluctuate so she has been told to monitor it more frequently over the next four weeks before returning for a consultation. She is also having frequent blood tests of her kidney function because of the change in her medication. She doesn’t like that the onus is now on her to remember to arrange her check-ups at the right frequency, whereas when under the care of the hospital, she was sent appointment letters. She prefers to see the same GP each time but this can sometimes be difficult because she can only go after her working day is finished. She also prefers to find out the test results each time by phone or in person with the GP rather than trusting that no news is good news. She would prefer it if they contacted her as a routine about the results rather than her having to ask for them. She feels reassured that her kidney function is being monitored and is not overly worried about it as it has remained stable at about 59 percent since her diagnosis and the doctors who diagnosed her did not seem particularly concerned about it. She is frequently told her test results are normal’, but she doesn’t understand how this can be, given that she only has about 60 percent of normal kidney function.