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Living with a Life-Limiting Illness: A Personal Account
  1. Jocelyn Barker
  1. Jocelyn Barker is a full-time mother and vicar’s wife and runs a support group for people with pulmonary hypertension in the London area

Abstract

This personal reflection describes the author’s experience of living with a life-limiting condition — idiopathic pulmonary arterial hypertension. This condition is associated with progressive elevation of pulmonary arterial pressure and can lead to right ventricular failure. It is not curable and the physical decline is progressive. Patients can die suddenly or live with treatment for a few years. The main hope is to have a double lung transplant. The article outlines the author’s thoughts relating to receiving the life-limiting diagnosis, its impact on herself and her family and her practical and emotional preparation for death. It will highlight the support strategies that she has found beneficial, including a patient support group where feelings about death and the dying process are able to be expressed openly. This article is one person’s viewpoint. However, it is hoped that it will provide nurses with insight into how it feels to live with a condition that cannot be cured.

  • Fear of death
  • Life-limiting conditions
  • Patient’s perspective
  • Patient support groups
  • Relatives

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