[Exploring the experience of cystic fibrosis patients post lung transplant-Literature review

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Acknowledgement

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Abstract

Lung transplant for patients with end stage cystic fibrosis (CF) in the United Kingdom is recognised as the only successful treatment for CF patients with advanced lung disease. This study uses an exploratory approach to examine how patients with Cystic Fibrosis (CF) and their carers cope with the rigours of chronic illness and life on a transplant waiting list. 8 patients with CF, 4 awaiting transplant and 4 who had been transplanted inside the previous 3 years, and 5 of their carers, were asked to explain their experiences using a semi-structured interview technique. 4 topics appeared from the interview data. D s. Support seems to be especially significant to patients and families, after false alarms happen, and upon come back dwelling after transplant The small sample size precludes generalisation of the results to all patients with CF but gives an in-depth insight into the lived experience of waiting for transplant. Chapter 1: Introduction

Cystic Fibrosis

Cystic fibrosis (CF) is an inherited disorder that presently affects 7500 sufferers in the United Kingdom (Cystic Fibrosis Trust 2004). Effects include repeated respiratory infections, liver disease and pancreatic insufficiency resulting in malnutrition and altered bowel habit.

Median life expectancy is 31 years in the joined Kingdom (Hodson 2000). Pulmonary disease is the major cause of death in CF sufferers, (Hoiby and Frederiksen 2000).The disease is usually progressive in nature, characterised by periods of exacerbation of chest problems, placing increasing demands on the individual and their carers. Increased life expectancy is accompanied by increasing complexity of problems; 30% of patients over 30 years develop diabetes mellitus,(Allen 2004). For those with end stage disease, lung or liver transplants are the only options.

With waiting times for lung transplant greater than two years as a result of donor shortages, and reports of deaths in up to 40% of those currently waiting (De Meester et al. 1999, Vizza et al. 2 s. Furthermore, the 40 persons in the UK per year (McCloskey et al. 1998) who succeed in gaining a lung transplant can expect survival rates of 75% at 1 year and 45% at 3 years (Hosenpud et al. 1997).The period of waiting for transplant has been aptly described as 'playing for time' (Christian et al 1999.) The journey through these stages of selection, assessment and acceptance onto the waiting list is lengthy, arduous, and stress-filled.

Rationale

Providing specialist nursing care to these chronically ill patients through periods of acute illness filled with periods of hope, despair and then renewed ...