Monday, August 11, 2008

Things getting a lot heavier - transplant assessment day 6

This week's transplant assessment schedule is a lot scarier looking than last week's. The information sessions are now coming in thick and fast, at least once a day. William has an endoscopy and liver biopsies tomorrow to ascertain the extent of his 'liver disease' this is what they are calling it now. His liver is not too bad but he does have a level of disease. His blood tests have shown us that. His liver function tests are ok. The bilirubin levels are down now, following his antibiotic treatment for collengitis (infection) caused by his gall stones. However, all his liver enzymes are high, indicating that his liver cells are damaged and leaking enzymes into his blood. Tomorrow's tests will reveal whether or not his liver is sick enough to recover if he came off TPN following a small bowel transplant of whether it also needs transplanting. If he has varices (dilated veins) in his bowel or osephegus, or if his biopsies show advanced liver disease, he will need a liver transplant. On Wednesday, he will have a CT scan of his neck veins. The ultrasound showed his right side to be blocked by blood clots and his left side patent. However, William has dilated blood vessels all over his chest and tummy and the fear is that the main blood vessle the neck veins feed into is also blocked. If this is the case, his TPN is currently flowing through veins that are re-routed over his tummy, rather than a vein draining directly into his heart. The liason nurse said that this would mean his line could not easily be resited and would indicate a clear need for an isolated bowel transplant (if the liver is OK). I had the chance to quiz the registrar a bit while he was going thorugh consent for the procedures tomorrow and he explained that the veins are abnormal and would probably indicate either the portal hypertension that would mean his liver needs transplanting (along side his bowel) or that his main vein, that both sides of his neck feed into, is blocked, indicating the need for a small bowel transplant. We still could be told that he can still manage on TPN for a few years and a transplant can be put on hold for a while, although the frequency of his line infections also comes into this. All will be revealed in the next few days.

Our programme is full of scary looking meetings with surgeons and transplant co-ordinators. We are also meeting the doctor who is researching the syndrome our geneticist thinks William may have. I am really looking forward to meeting her as she may be able to throw more light on his conditionn and give us some more info. It would be fantastic to come away with a name to call it (there is no test so it can't be a true diagnosis).

William had an abdominal ultrasound today and I had an information session where we went through William's blood test results and talked about organ donation facts and figures. Apparently, there is a potential pool of approx 600-700 donors a year. Of these, 200-300 do not donate because the family say no or, more usually, because the family were never asked. There is the potential of 1500 organ donors a year. If most of these became donors, there would be no need for schemes such as the 'opt out' scheme. There is a current target to have a donor co-ordinator in every hospital with an intensive care unit to try and maximise donors. Of the 6-700 donors, only about 25 are children aged between 0-18. William could receive a bowel (and liver) from a child up to abour 40kg. They can cut the organs down to fit and, in desperation, we could go up and even receive from an adult. However, it is best for him to have a child up to 40kg. His blood group is o. 5o% of the population are an o but o's can only receive from o's. This means, there are probably about 5 donors a year that he could recieve an organ from. That is five situations in which we would have to hope that the organs were good enough and that information was given in an appropriate way and the family consented. Of course, we also would have to hope that there was no-one else who the organs could be suitable more sick than William and that William was well enough to receive (i.e. not sick with a line infection). There is more info on all this at the UK transplant website.

1 comment:

Tinypoppet said...

Thinking of you loads and loads know where I am if you want to chat, I know how much it all is to take in xxx