Meet John: real stories of self management

Once you have mastered self management, you can use that knowledge to take a lead in your own health care, accessing support when needed.

John is 66 years old and lives in Ayrshire. He is a former Pharmaceutical Operator, taking early retirement at the age of 58. He was diagnosed with polycystic kidney disease and is currently living with five per cent kidney function.

Firstly John was detected to have high blood pressure in 2005, a common first indicator of polycystic kidney disease. John was unaware of a family history of kidney failure so was not overly alarmed by the diagnosis.

Polycystic kidney disease can be an overwhelming condition.

At the time of diagnosis John knew very little about kidney failure. However, through the progression of his condition John has become highly knowledgeable aiding him to be an active partner in his care.

As John’s kidneys have decreased in their functioning capabilities, at each stage he has had to adapt his approach to self management to accommodate this and apply new techniques in keeping himself well. Symptoms include tiredness and shortness of breath, however dialysis itself can be draining. At present he needs to participate in monthly blood tests at the hospital to check his current toxin levels which reflect kidney function.

What self management means for John

Self management for John is about working dialysis around my life, not working my life around it.

John spent three months being taught by medics how to deliver home dialysis, including how to set up, operate and clean the equipment. John even orders the machine equipment himself now. Dialysing at home brings increased independence and the flexibility of how to schedule your own sessions. John has to accommodate three sessions a week, and although each lasts four hours, self-management allows John to carry these out in the evening if he is busy throughout the day.

John is a keen walker and enjoys swimming, both of which contribute to keeping him well. Not only is it good for his general health, but he also enjoys the social element of participating in his chosen hobbies.

Self management is about working in partnership with health and social care professionals to manage your health care. John is able to draw on the support of the Renal Nurse if he needs advice or assistance in his care but is “hugely thankful” that home dialysis was an option for him so his life is not restricted by numerous stringent appointments.

John’s message

• Once you have mastered the techniques to self manage, you can use that knowledge to take a lead in your own health care, accessing support from professionals when you need it.
• Home dialysis allows people with kidney failure to regain control over their own lives, offering flexibility, choice and charge over their treatment.