Rachel S

While I was still in my mam's tummy they first found something wrong that my bladder was full, they drained it and it was full again a few days later. Once I was born I didn't feed properly, I was a very sicky baby and everything just went straight through me or came back up again; the hospital didn't know what was wrong. At 9 months old I was taken to theatre and given an ileostomy, I was also put on TPN and was 100% dependent on it.
When I was a couple of years old my mam requested a second opinion and wanted to go to another hospital, so we went off for a second opinion at GOSH, they did a few small tests and diagnosed me with Vistral Myopathy Pseudo Obstruction and at the time there was no options really, they said that I would stay on TPN and just to go home and carry on, later in life I may need a transplant but that wasn't really happening back then (1997-8) so off we went, I spent a lot of time in hospital with adhesions and obstructions.
When I was 9 years old in the September of 2003 my doctor said that he thought it was time for me to go to Birmingham Children's Hospital and be assessed for a liver and small bowel transplant as I was starting to look yellow and I'd got pretty bad portal hypertension, all the vessels in my nose were bursting and I was having awful nose bleeds, I was also starting to develop a lot of pain and my mam was administering IV morphine at home for my pain.
Then on Good Friday in the April of 2004 my mam tried to empty my stoma bag but couldn't get what was in it out, eventually she did and it just looked like a big lump of liver (it was a massive blood clot) so my mam rushed me 40miles to my local hospital which was the RVI in Newcastle and for weeks I was been taken to theatre to have the vessels around my stoma stitched up. My consultant still hadn't referred me for transplant assessment and by this point I was in end stage liver failure very very sick: I was flown by air ambulance 200 miles away to the only children's transplant centre which was BCH at the time and I was placed on the urgent list, I waited 4 months for my organs and on the 27th of August 2004 I had my 17 and a half hour long liver and small bowel transplant, I had about 22 units of blood, a few times they didn't think I was going to pull through but I fought and made it.
For the first time in my life I came off TPN and went onto overnight NG feeds and started eating, for 6 and a half years things were great, I had my large bowel removed a couple of years after transplant and I had pneumonia a few times but otherwise things were good.
In 2011 things started to go wrong and I lost a lot of weight and was unable to tolerate my NG feeds, I was aspirating litres of bile out of my tummy and I felt constantly full and sick, I eventually needed surgery at BCH and they found a kink in my bowel and adhesions and fixed them but about a month later things slowed down again and I lost even more weight and started to develop a lot of chronic pain in my back, I was re admitted and placed back on TPN and IV morphine for my pain, apart from two weeks over Xmas I was an inpatient from September 2011 to July 2012! I was then eventually in the May diagnosed with chronic rejection of my transplanted small bowel so intestinal failure, basically it was just the plan to go home on TPN and IV morphine, IV cyclizine and IV omeperazol. I ended up in the Freeman hospital in Newcastle in an induced coma for 7 days last year, fully ventilated and required dialysis too, I had septicaemia on my lungs and chest but other than that I've been reasonably well. I currently only have 3 nights of TPN a week and they are only vamin bags so I have no lipids, on the nights I don't have TPN I have IV fluids as I get dehydrated very easily. I also suffer from diversion colitis in the 10cm stump of large bowel I have left and I also have arthritis!
I just turned 20 in July and for the past 20 years my mam has been my full time carer and done it all on her own, we have never had any kind of home health nurses or anything and now I do most of my TPN and Line care, I learnt from the best nurse ever, my wonderful Mam!