Organ donation

Diana - Interview 03

Female
Age at interview: 54

Brief outline: Diana had a heart and lung transplant in 2002, aged 46. She had a lot of sickness for about four months and felt depressed. She started feeling better after about six months and, over eight years on, is very well.

Background: Diana is married and works part time as a counselling psychologist. Ethnic background / nationality' White British.

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Diana had a congenital heart condition from birth, which was diagnosed when she was five-years-old. She later developed pulmonary hypertension, which caused her to have lung problems that became more severe over time. Through her 30s, Diana was often breathless, especially when she exercised. Her health gradually deteriorated and, by her 40s, she was unable to walk very far or climb stairs without feeling breathless and tired. When she found it more and more difficult to breathe, she took medical retirement from work.

Diana said she had never been interested in having a transplant because she disliked hospitals and medical intervention. From her 40s onwards, though, she began realising that a transplant might be an option that she would need to consider.

At the end of 2000, when Diana had reached the point she could hardly breathe, she was admitted to hospital for three weeks, where she was also assessed for a transplant. She realised at this point that, without a transplant, she could die. Diana’s main concern was the amount of medications she would need to take post-transplant. She had always reacted badly to medicines, including antibiotics and general anaesthetics.

Back at home, Diana had an oxygen concentrator fitted and various other aids to help her in her daily life. Eventually she became so weak that she and her husband needed to make a decision about transplant. They gave themselves six months to think about this major decision, and Diana talked to health professionals and former transplant patients. This was a very uncertain time and Diana said that, when she saw the 9/11 terrorist disaster live on television, she finally made up her mind to join the transplant waiting list.

Waiting for a transplant was another uncertain time. Diana knew the call for surgery could come at any time and, even then, be a false alarm and she could be sent back home without surgery. Diana said she felt ‘numb’ during this time. She had one false alarm and felt disappointed afterwards, which showed her that she was ready for the transplant.

On 8th June, Diana received a call from the hospital informing her that organs were available for her transplant. She said she didn’t feel anxious but, rather, ‘disassociated’ and concerned about preparing for her hospital stay.

After surgery, Diana came round in intensive care and, about five days later, was transferred to a general ward where she stayed for a further two weeks. She said she felt extremely sick and that it took about four months for the sickness to be controlled. At this point, Diana felt that having a transplant had been the wrong decision. She felt angry and scared. She also felt a sense of grief for the heart and lungs she had lost.

After two weeks on the ward, Diana spent three days in a flat near the hospital. Back home, however, she was very sick and was re-admitted to hospital, where she spent another week. Her medication was halved and she was discharged. At home, Diana was very sick and, again, re-admitted to hospital for a further week. Emotionally, she felt depressed and suicidal. She found it difficult to sleep and was hardly eating. She felt shocked and grieved her old life. Diana said that, only after four months or so, did she start feeling better physically and emotionally, gradually becoming stronger and fitter.

About six months after her transplant, shortly after her depression, Diana said she felt ‘euphoric’. She began to realise that she now had more energy than she’d experienced in a very long time and ‘wanted to do everything’. Over eight years on, Diana said she felt very well. Throughout this time, she has had two infections and recovered well on both occasions.

A year after Diana’s transplant, she started working again and, for the last six years, has worked part-time in the NHS as a counselling psychologist. Since her transplant, she has also travelled widely and spent quality time with her husband and family.

Diana was told very little about her donor. Two weeks after her transplant, she was told that the organs she’d received had come from a 31-year-old woman who had, sadly, died from a brain haemorrhage. One year after the transplant, Diana wrote to her donor family. She said she always thought about them and her donor. Five years after the transplant she wrote to them again, though has never had a reply. She plans to write to them again and said she would like to know more about her donor, to whom she is extremely grateful, as well as to her donor’s family.

Diana said she found the support from her husband invaluable, as well as meditation. She exercises a lot and does her best to look after herself. Since her transplant, she has also written a book about her experience, called Will I still be me? A journey through a transplant (published by Day Books).

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