Organ donation

Helen - Interview 23

Age at interview: 39

Brief outline: Helen had cystic fibrosis since childhood, which got worse as she got older. She had a lung and liver transplant in 2006, aged 34, and has been very well since then.

Background: Helen is a single. Ethnic background / nationality' White British.

Audio & video

Helen was diagnosed with Cystic Fibrosis (CF) when she was just ten weeks old. An early diagnosis meant she received treatment and was able to control it throughout her childhood. She described how she maintained her health to a point that people would not realise she had the condition. After university, she started work as a teacher but, at the age of 23, her health started to deteriorate. 

Helen began feeling tired and getting chest infections for the first time in her life. Throughout the next few years, her chest infections became more frequent and her health deteriorated quite rapidly. Helen was assessed for potential organ transplantation, but did not believe it would ever come to that.

CF began to impact Helen’s life more and more. She loved being a teacher and was becoming very successful in her career. However, she began to find work increasingly difficult. Colleagues and pupils were concerned because she appeared so unwell.

 At the age of 30, Helen was promoted to a new role but, shortly afterwards, became very ill with another chest infection and had to take a lot of time off work. She felt so guilty about not doing her job as well as she’d have liked that she decided to resign.

 When the decision was made to go on the transplant waiting list, Helen said it was very difficult to find a hospital that would accept her. She needed more than one organ (heart, lungs and liver), which meant there was a higher risk that the transplant would fail. 

Eventually, Helen was accepted on a waiting list. After fifteen months of waiting, doctors reassessed her to see if she needed a heart transplant. It was decided she did not and that she could now go on the waiting list for just lung and liver. Within eight weeks, Helen received the call to say a potential donor was available and the operation could go ahead.

After the operation, Helen began her recovery in the High Dependency Unit (HDU). Later, she was transferred to a general ward and recalled how the quality of care between the two wards differed vastly. Helen described the nurses in HDU as ‘angels’ but felt ‘neglected’ on the general ward and was keen to go home.

Within a month of the operation, Helen was discharged from hospital and her Mum moved in to care for her for the first two months. It took about six months before Helen felt back on her feet again. She now has follow-up appointments every three months.


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