THE FACTS

When HPN becomes too difficult because of life-threatening complications or very poor quality of life then the final option is to remove the failed intestine from the patient, and replace it with a functioning one from a donor (transplantation). Sometimes this may just be a part of the intestine, or sometimes the bowel, stomach, pancreas and liver can be transplanted. As of 2012, over 100 patients have had this procedure in the UK.

Over the years there have been many improvements to the life of a patient after bowel transplantation. Now there is a good likelihood that the patient will be able to eat and drink normally, be free from parenteral nutrition and intravenous lines, and return to school or work. However, many of the patients are very unwell before transplant, the procedure is major, and the strong medications have side-effects so not everyone will get through the transplant.

Looking at the international figures we can say that of those who underwent bowel transplantation 1 year ago, over 80% are alive and of those who underwent transplantation 5 years ago, 60% are alive. However, if a patient survives the first year after transplant then there is an 80% chance of surviving another 5 years. The recent UK figures, and those from established US centres show somewhat better outcomes, and these figures are now equal to or better than those for lung transplantation.

Intestinal transplantation remains a difficult procedure, both for the medical teams and for the families involved. It is a major procedure, and the patient is likely to be in hospital for over a month after the surgery. The bowel is one of the major immune organs of the body, and thus many immune cells are transplanted with the new bowel. These make the problem of rejection of the organ difficult to deal with, and the patient needs to take very strong drugs to prevent this. The bowel also carries millions of bacteria and has to recognise which are good bacteria and which may cause problems. This, together with the strong anti-rejection drugs can lead to problems with infection. These problems of infection and rejection are major hurdles, and thus in the first year after transplant, there are multiple medications to take, and many visits to hospital. Hopefully this improves over time, but the patient will remain on strong medications and with regular hospital reviews for life.

The families sign up for an immense amount of time input, hard work, social isolation and financial impact. Long stays in hospital are expensive for a family, and travel to and from hospitals which may be many miles away is costly. Most parents of a child undergoing transplantation find it impossible for both partners to work. For the child there may be a lot of social life and schooling missed. This is a challenge for their futures.

We can see from the outcome figures that there is still a long way to go to improve things for patients after transplantation. Long-term survival rates need to improve, and we need to try and improve life for families during the transplant period and afterwards. This is particularly difficult to achieve in intestinal transplantation for a number of reasons:

• The problems of rejection and infection in all types of transplantation are particularly difficult in the bowel
• The small number of patients undergoing intestinal transplantation means that experience is limited
• The amount of money going towards research in intestinal transplantation is very little
• The services for families may be limited by lack of funding

To try and overcome these issues and make improvements there is ongoing research into the specific problems – but more funding for this is required; teams from the UK, Europe and the whole world meet regularly to share experience, data, and innovations; people from within the intestinal transplant world lobby for more support for families..