The next story in our special blogs for Transplant Week, is 18 year old Molly Smith's story. Here she tells us first hand, her journey to transplant and beyond (written March 2008).
Molly received a multi-organ transplant (small bowel, liver and pancreas) at the age of 16.
"When I was just 6 months old I was suddenly taken ill and it was discovered that the majority of my small intestines had telescoped in on themselves and died due to restricted blood supply. After surgery to remove the affected bowel I was only left with 30cm of small intestine, and as a result I was put onto intravenous feeding, called TPN (total parental nutrition), administered through a central line leading directly into my heart. The TPN I received contained all the nutrients I needed, so I didn’t eat anything at all by mouth. As I grew up I easily adapted to living like this as it was all I had ever known. And as my TPN only had to run overnight I could attend school during the day, and in most other respects led a ‘normal life’. My health was good, and I only occasionally had to miss school for hospital appointments.
However, when I was 14 my family and friends began to notice I was jaundiced, and over the following months this became more obvious. I also became very lethargic and regularly suffered from severe nosebleeds. After tests at different hospitals it was discovered that I was suffering from TPN related liver disease. TPN often causes liver disease in babies and toddlers, but it was very unusual for it to cause problems in someone who had been on TPN as long as I had. The only chance I had was a multi-organ transplant (small bowel, liver and pancreas). After a two week transplant assessment at Birmingham Children’s Hospital I was put on the transplant list, just before my 16th birthday.
Back at home waiting for a transplant, my health deteriorated further. After 7 and a half weeks waiting I attended a clinic where I was told that there was a national shortage of donors, so I could be in for a long wait. Just a couple of days later the call I had been waiting for came. My dad drove us to the hospital that night and then at 8am on Sunday 19th November I went into theatre for my transplant. I was in theatre for 12 hours, in intensive care for 5 days, and in hospital for 12 weeks. The 12 weeks I spent in hospital weren’t straightforward as different complications meant I had to return to theatre more than 10 times. But eventually in February 2007 I returned home.
Since I returned home my health has continued to improve. In the 2 years since my transplant I’ve experienced no rejection. I returned to school full-time 9 months after my transplant and most of my new friends have no idea I’ve been ill. My medications have reduced from 14 to just 5. After my transplant my feed was changed from TPN (which went straight into my heart) to enteral feed (which goes into my stomach and digestive system), as I now have enough small bowel to absorb nutrients. Since I came home from hospital I’ve learnt to eat and gradually built up my eating and decreased my enteral feeds, until my eating got to a ‘normal’ level and I could stop the enteral feeds completely.
I feel like my transplant has given me a future as I know without it I wouldn’t be here now. My transplant has enabled me to do so much and last month I went on a school trip to Japan, which would never have been possible before. I’m eternally grateful to my donor and her family."
4 weeks ago