Monday, 28 February 2000

Rachy's Story

At age 13 my asthma which I'd suffered from since age 18mths seemed to become uncontrollable. I spent most of my early teens on the children's ward at a local hospital, where doctors prescribed every asthma medication they could think of with no success, during that time I suffered chest infections every 6wks and experienced my first lung collapse. Eventually after a year of trials with different asthma medications a CT Scan of my lungs was carried out. My doctor at first blamed the CT Scanner for distorting the images and asked for a repeat scan. This confirmed their worst fears, there was a reason asthma medication wasn't working that was because I had a lung disease called interstitial lung disease (ILD) which is progressive, irreversible and eventually fatal. No sooner were the reports in I was transferred to a specialist children's hospital, they found I had a massive pneumonia and already had large amounts of permanent lung damage. It took 3mths in critical care for me to recover enough from the infections to have a lung biopsy where pieces of my lungs were removed for examination. ILD is a disease that mainly affects adults and so it was decided that I should be referred to adult medicine ASAP. My new adult doctor was unsure about how to manage my lung disease and he referred me for the expert opinion of the UK's leading ILD professors 220miles away in central London. After 5yrs of tests, treatment trials, appointments 2,3,4 times a week, countless stays in hospitals, intensive care units, lines out of every possible vessel, respiratory and cardiac arrest, MRSA and hospice admission it was finally decided I was suitable for a lung transplant and after months of communication between my doctors in London and the local transplant hospital they agreed that I should be listed for a double lung transplant. That happened on 25th November 2009, this my blog is my story of life waiting for new lungs.
-------------------------UPDATED MAY 2011-------------------------
I received the call to say lungs had been found for me on March 10th 2010 at 4.10am. We grabbed essentials and sped to the hospital arriving on the ward around 5am. Throughout the day co-ordinators, various members of the transplant team and surgeons all came and went. All we knew was that the donor was none heart beating so the chances of the transplant going ahead were very small. By late afternoon I'd lost hope that it would go ahead and resigned myself to the fact we would be sent home. At around 5.30pm having been at the hospital all day mum and dad went to the day room along with the BBC who had been with us all day filming, leaving me to get some rest whilst we waited for more news. No sooner had they left an anaesthetist appeared at my door, the transplant was going ahead and theatre was waiting for me. From that moment everything is a bit of a blur, it all happened so quickly, I signed my final consent forms and we set off for theatre. I peered out the window looking at the last of the light the only thing running through my mind 'this could be the last time I ever see daylight... These could be the final moments of my life... Am I doing the right thing?' The anaesthetic room was also a blur, busyness, people in scrubs and surgeons trying to get lines into my scarred vessels and failing miserably. I said my final goodbyes to mum and dad and was put to sleep for my transplant at 6.48pm.
For mum and dad the wait then began, they went home briefly to get supplies and returned to the hospital receiving very few updates from theatre. After 10 long hours Cardio thoracic critical care called them to say the transplant had been a success and I was now stable on the unit.
From then on this blog has charted my progress and recovery which is on going.
Unfortunately due to how unwell I was pre transplant I've suffered alot of complications, the new lungs are damaged and will not recover but I keep going and keep smiling, without my donor and transplant I wouldn't be here now.

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