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Molly's transplant journey.

 

Hello, my name is Molly and I'm 20 years old.

When I was born everything was fine until I was 6 months old. At this point I had an intussusception of my small intestine which meant that it scoped in on itself which cut off the blood supply, so most of my small intestine died. In several operations at my local hospital (because I was too ill to be moved to a specialist hospital) I had all but 30cm of it removed. No-one knows why I had the intussusception. Once I was stable I was transferred to Great Ormond Street Hospital (GOSH) where I was put onto a method of intravenous feeding called TPN, where nutrients went directly into my heart via a central line.

                           

Me as a baby on my TPN with a nurse

 

When I was 2 and a half years old some blood clots formed on the end of my plastic central line in my heart. They broke lose and went into my lungs, so I had to have open heart surgery to remove them. That went well and I was then put on a blood thinning drug to prevent the same thing happening again.

 I grew up with TPN and didn't eat anything orally. My TPN ran overnight every night, so I attended normal school during the days. That was normal life for me as I'd never known any different. Apart from the occasional line infection everything went smoothly. Central lines don't tend to last that long before they need replacing, but mine did really well and one even lasted for 7 years. It had to be replaced because it wore so thin you could see through it! I learnt how to connect and disconnect my TPN at about the age of 8, so was able to become very independent and when I reached secondary school I was able to stay away from home with my TPN for sleepovers.

 At school one day when I was nearly 15 we had to go outside and line up on the tennis courts for a fire drill. A group of boys in my class started teasing me because they said I looked green. At first this yellow tinge to my skin was only apparent in certain lights, but it gradually became worse. This is called jaundice and can be a sign of liver disease. I also began to suffer from regular profuse nosebleeds because my blood wasn't clotting properly and I became extremely lethargic. At GOSH I had tests to see if I had any gall stones because these are a common side effect of TPN and could explain my symptoms. But I didn't have any gall stones and then it was realised I had liver disease.

 I was referred to Kings College Hospital where I had more tests to try to discover the cause of my liver disease. They couldn't find a cause, so therefore it was TPN related liver disease. This method of being artificially fed can cause liver disease, but it usually occurs quite soon after being put on TPN, not 14 years down the line! It was explained to me that my liver was too damaged to repair itself, so I'd need a transplant. If I just had a liver transplant I would have to continue to receive TPN which would probably then damage my new liver, so instead I was told it would be best for me to receive a small bowel, liver and pancreas transplant. The liver would replace my failing liver, the small bowel would mean I would be able to eat and would be able to come off TPN and the pancreas was just part of the package. I was almost 16 at this point so was referred to both a UK adult small bowel transplant centre at Addenbrookes Hospital and a UK children's small bowel transplant centre at Birmingham Children's Hospital (BCH). Addenbrookes told me that I would have to wait longer for a transplant at their adult services, so I went to BCH instead. Then I had a rushed transplant assessment because I needed to be placed on the transplant list before I turned 16 as it was a paediatric hospital. I was listed the day before my 16th birthday.

                 

Me very jaundiced with my uncle on my 16th birthday

 

At this point I was too ill to attend school so had home tutoring when I felt up to it. I was regularly admitted to hospital for treatment to stop my profuse nosebleeds and blood transfusions to replace the large amounts of blood that I was losing. I was very lethargic and had no energy. I also looked very jaundiced. I went home to wait for the call. After 7 and a half weeks I returned to BCH for an outpatient clinic. There the doctors were very worried about my health and thought that if I had to wait much longer I would probably need to be admitted to hospital. I was told that there was a national shortage of organ donors so my wait might be a long one. Just a couple of days later, after 8 weeks on the transplant list, I received the call. At 8am on Sunday 19th November 2006 I went into theatre for a 12 hour transplant operation.

 Immediately after the transplant my skin returned to its normal colour. I had many complications and more than 10 trips to theatre in the couple of months after my transplant, but things were gradually heading in the right direction. On January 1st 2007 I came off TPN. My TPN had gradually been reduced and enteral feeds (via a nasogastric, NG, tube into my stomach) had been built up to replace the TPN. Eventually 12 weeks after my transplant I was able to return home.

November 2010 was my 4 year transplant anniversary. When I first came home from hospital after my transplant I was taking over 80 tablets a day. Now I just take around 10. At first I had hospital trips weekly, now I'm seen at outpatient clinics every 2 to 6 months (depending how my health is doing) and have a few tests annually to check for rejection. So far I've had no rejection at all. After my transplant I had an illeostomy to enable the doctors to easily monitor my transplanted bowel, but that was reversed in July 2008, 20 months after my transplant. I returned to school full-time 9 months after my transplant and most of my new friends had no idea I’d been ill. I've gradually learnt to eat and as I've built up my eating I've been able to reduce my NG feeds. Last year I was able to stop my enteral feeds completely and a little while after that I was able to stop my high calorie supplements too. Now I'm able to maintain my weight (and even gain weight) just via normal eating for the first time in my life. As 2011 has just begun I've been looking back at the past year and have realised it has been my first year ever without any overnight hospital stays. It has also been the year that I've been able to complete my transition to an adult hospital because my health is now stable enough and at 20 I was getting too old for paediatric services!

 My transplant has given me a future as I know without it I wouldn’t be here now. It has enabled me to do so much and since I received it I've achieved so many amazing things which wouldn't have been possible before my transplant. I've been on holiday to Florida with my family, I've been on a sixth form trip to Japan without my parents, I've passed my GCSEs and completed a sixth form course and I've been able to enjoy my life and plan my future. I've also met some amazing people in the transplant community. I’m eternally grateful to my donor and her family and feel very privileged to be in contact with them.

 

Swimming with a dolphin in Florida in 2008