Organ donation

Justine - Interview 11

Age at interview: 37

Brief outline: After ten years of illness, including chest pain and collapsed lungs, Justine was diagnosed with a rare lung condition, called LAM, aged 31. She had a double lung transplant in 2006 and has been raising awareness of LAM and organ donation since then.

Background: Justine is single. She is an artist and professional speaker. Ethnic background / nationality' White British.

Audio & video

Around the age of 21, Justine had severe chest pain and was rushed into hospital, where doctors told her that her right lung had collapsed. Two weeks later, her right lung collapsed again and she had surgery to pin it to her ribs. The operation took time to recover from physically and emotionally and Justine had counselling afterwards because she’d found it traumatic. She continued living with chest pain for about seven years, never knowing why she had it, occasionally admitting herself to Accident and Emergency. She was usually given painkillers and told that there was nothing wrong.

After talking to her parents and doctor, Justine was referred to a pain specialist, who thought the pain may have been related to her operation. She continued living with chest pain for a further three years.

In 2004, aged 31, Justine felt very unwell at work and was taken to hospital by her parents because she was looking extremely pale. She was told that both her lungs had collapsed and she would need a chest drain. This was a very painful procedure but Justine said that, by this time, she was finding it difficult to breathe. She was later referred to a specialist hospital and diagnosed with a rare lung condition, called lymphangioleiomyomatosis (LAM). LAM mostly affects women in their mid-thirties and forties. In LAM, abnormal, muscle-like cells begin to grow out of control in certain organs or tissues, especially the lungs, lymph nodes and kidneys. Over time, these LAM cells can grow throughout the lungs and destroy the normal lung tissue so air can’t move freely in and out of the lungs.

Justine was told that she was at the end stage of the disease and, without a transplant, would have only twelve to eighteen months to live. She said, ‘Words, emotions, it’s so hard to say. I just felt everything crumble around me. I was a young woman in my prime. When you get told devastating news that you’re going to die or with transplants it’s a 50'50 chance; some people do, some people don’t. And I knew now I was in this category.’

Justine said her lungs collapsed on a number of occasions and, each time, she was rushed into hospital. She set up her own website about the condition, LAM, and when the doctors at her local hospital didn’t know what it was, she was able to refer them to her website ( By now, her right lung was no longer working. Her left lung collapsed thirteen times in total. In one week, Justine had thirteen lung collapses and was left struggling to breathe on three occasions. She said her family came to say goodbye to her after visiting her grandmother’s stone setting the same day. This was the most difficult part of her experience.

Around this time, Justine was given a new type of surgery but, unfortunately, it did not work. She ended up critically ill in intensive care for three weeks and spent two months on a ventilator (life support machine). She recalled being allowed to have her first sip of water after seven weeks and, gradually, over time, learning to walk again with the aid of a Zimmer frame. In total, she spent six months in hospital.

In 2006, after three ‘false alarms’, Justine was given a double lung transplant. She said she felt ‘amazing’ after coming round because she was able to breathe properly for the first time in years. She said the pain was managed well and, three weeks later, she was discharged from hospital ‘after being ill for ten years’. Later, she got shingles and a virus that damaged her lungs so that, now, she has 60% lung function.

Since her transplant, Justine has been heavily involved in raising awareness of LAM and organ donation in the media, on the internet and amongst friends and family. She has travelled widely and taken part in the British Transplant Games. Two years after her transplant, Justine wrote a letter to her donor family via the specialist nurse [transplant co-ordinator]. She’d like to hear back from them but understands that they may not want or feel able to write back.

Justine now has follow-up appointments every 3-6 months. She takes about fifteen tablets a day and has a machine at home with which she can monitor her own lung function. Justine said she still gets tired but exercises and enjoys doing artwork. 


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