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Waiting for a transplant Lives lost waiting Recipient of a transplant Giving the gift of life

Rachael Wakefield has been battling severe health issues her entire teenage life. Now, aged 21, she is being listed for a double lung transplant.

I was diagnosed with Interstitial lung disease (ILD) after a long spell in hospital with Pneumonia age 15. Up until then my childhood had been fairly normal, I had had asthma since 18mths of age but it never stopped me doing anything. I was fit and healthy and had many hobbies including horse riding and SCUBA diving. Aged 12, I swam 5 km, over 170 lengths, just because I could!

Around age 14, I started to get chest infections more often, they took along time to respond to IV treatment and I often needed oxygen. It was at that point my doctors did a CT scan of my lungs and were shocked by the results. They repeated the scan in the hope that some how it was wrong. After I’d recovered from this latest infection I found I still needed oxygen because of the damage that had been caused. I also had an open lung biopsy where pieces of my lungs were removed for examination to determine what was wrong and this confirmed their worst fears. I had ILD. ILD is a term given to various lung diseases which affect the lung tissue, causing fibrosis (permanent scarring). Scarred lung tissue is unable to transfer oxygen into the blood stream affectively, which causes symptoms such as low oxygen levels, breathlessness, restricted mobility, a dry, harsh cough, chest pain and severe headaches.

My doctors, including top UK specialists in London spent many years trying to find out what exactly it was; in the hope the progression could be halted. But my case left them baffled; tests seemed to raise more questions than they answered. I received massive doses of steroids in the hope some of the inflammation in my lungs could be brought under control and we did everything we could to avoid further damage, including moving house getting rid of our 11yr old cockatiel when it was proved I was mildly allergic to her. All this was happening during my teenage years, what should have been some of the best years of my life were spent hooked to machines in intensive care units with drips and monitors all over my body just so I could breathe. Although my school friends were supportive they had their own lives and I had mine. I went to school twice a week in a wheelchair and on oxygen the other three days a week I went to hospital school. I sat my GCSE exams in a hospital bed.

At age 17 my condition worsened and my lungs began failing, it was becoming more difficult for them to transfer oxygen into my blood stream so I was given a non-invasive ventilator to breathe for me at night. In October 2008 after a hellish 4yrs during which time I had contracted MRSA, undergone chemotherapy, suffered painful bone infections, died and been revived on 2 occasions the worst was yet to come; I went into end stage respiratory failure and was admitted to a hospice. My parents were told to prepare for the worst and began talking through funeral plans with the hospice staff. I was placed on morphine and given just days to live. At that point I hit rock bottom, I became very down whilst I came to terms with the fact that at age 20 my life was coming to an end. I sat up with hospice nurses until the early hours of the morning some nights crying “I don’t want to die yet, I’m just not ready!” All they could do was comfort me and make sure I wasn’t in pain.

After 6 weeks in the hospice I had settled into my new morphine regime and was able to have Christmas at home. My parents made sure it was not one I was going to forget, we made it extra special in case it was our last Christmas together.

When I was well enough we went to see my team in London who agreed they will probably never know now what the exact cause of my lung disease was but that that didn’t really matter and there was no reason why I would not be suitable for a lung transplant. My case was then passed to a local lung transplant team. I waited many months for the assessment and decision, almost 12mths after I was told I had just days to live it was agreed I could go on the lung transplant list. At that time for me and everyone involved with my life it was a huge relief. For the first time since getting ill I could allow myself to plan for a future rather than my planning my own funeral.

Every day life currently revolves around staying well enough for transplant. This involves oxygen, ventilation, physiotherapy, nebulisers, antibiotics, inhalers and over 20 different medications. I need a wheelchair when outdoors and I’m unable to leave the house alone in case my breathing suddenly deteriorates; my mum has had give up a job that she loved to become my full time carer. As much as my mum loves spending time with me and helping to look after me, I do sometimes feel like a burden to her. Looking after your 21 year old daughter full time is not exactly a normal or easy job.

For me a lung transplant is the only thing that will ensure I have a future, my doctors are puzzled as to how I’ve made it this far but I’m determined I will keep proving them wrong. Hanging over my head is the fact that 50% of those on lung transplant waiting lists die before a donor can be found, I’m determined I will fall in that 50% that makes it. I love life and I want to live for every second not fight for every breath.