Kidney health

Expectations, hopes and concerns for the future

We asked people what they expected to happen to their kidney health in the future. No one could be certain what the future would hold, some saying they would prefer not to think about it unless their kidney performance dropped to a level where they required treatment. Harry said that at age 78 he expected to have health problems. Some said they would like to find out more from their doctor about what could happen to their kidney health.
It was common for people to hope and expect that their kidney performance would not get any worse than it was now and that it wouldn’t cause them any ill health. Some said they hoped or expected to live to old age, while Donald and Jill prioritised quality of life over quantity.
People commonly expected that their kidney performance would remain stable because of taking medicines to control their blood pressure or having stopped a drug that was thought to have caused their kidney problem. Others hoped for an improvement. Kidney performance can vary but is more likely to slowly reduce rather than improve over time. Some people we spoke to had experienced an increase in their kidney performance after altering their medication.
The desire to achieve stable or improved kidney performance was a strong motivator for some to look after their health in the hope that it would benefit their kidneys (see ‘Lifestyle changes’). Joanne and Jackie Z weren’t sure there was anything they could do to protect their kidneys from further decline.
Others were convinced that their kidney performance would not improve regardless of what they did or because they were growing old. Eric expected his kidney performance to go down but not to fail completely. Lesley’s kidney performance had reduced a little and she was concerned that it might go down to a dangerous level before any of her doctors would check it routinely rather than her having to ask for a test.
Lesley had looked up the symptoms of kidney disease on the internet but other people said they wouldn’t know what signs to look out for of worsening kidney health. Some people often wondered whether symptoms they experienced might be related to their kidney health, such as occasional twinges in the lower back.
The future health of their kidneys was not a common source of worry for people we spoke to. Rather, they were aware that it might cause them problems in the future but there was no point in worrying until something happened. Some said they had been reassured by their doctors that a problem was unlikely or a long way off (only two out of every hundred people with kidney impairment ever need dialysis or a kidney transplant). Some hoped that a cure might be found in the meantime.
Others had concerns about the possibility of developing a serious kidney problem in future and needing to have dialysis or a transplant. They found the prospect frightening because they had known other people who had experienced such treatments (see also ‘Thoughts and feelings at diagnosis’) or they perceived that dialysis would severely limit their day-to-day activities. However, Flo had felt encouraged by meeting people in the hospital renal clinic who had these treatments and maintained a positive outlook. Laura’s doctor’s comments had caused her concern when she was told sixteen years ago that there was a one in three chance of her kidneys failing within ten years. This didn’t happen but she still thinks about this statistic a lot and whether she will need dialysis in the future.
In a few cases the possibility of further kidney investigations or treatments in the future had been raised by a doctor. For instance, Laura and Flo had been told that if their kidney performance dropped to a certain level they might need to have a small sample (biopsy) of their kidney tissue removed and analysed in a laboratory to find out the specific cause of their kidney problem. For more about biopsies see ‘Diagnosing problems with kidney health’. Others had been told they might need dialysis at some point. Jim B was currently receiving peritoneal dialysis at home while waiting for a kidney transplant. However, the majority of people asked said these topics had never been mentioned by their doctors.

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