[Helen Robinson]

Infusing desferal subcutaneously can be a nuisance but the alternative is not worth thinking about. If you can avoid liver and heart damage why not try. David has been infusing since Dec 2005. He has had some breaks due to abscesses at the site but we seem to have a good system now. We keep antibiotics on hand because he can become delerious in a few hours. This has avoided hospital stays and surgical draining.

I help by swabbing the site and using iodine as well. Everything is covered with Op-site surgical tape which means he can shower. He now only leaves each infusuin in for three days and copes with the pump in bed . He has a break for a day and starts again. If he infuses too often his kidneys are affected. With this regime he has been able to maintain the ferritin around 2500 after 135 transfusions mostly of three units.

Some nurses want him to get a port-o-cath but his haemotologist says that is a last resort because of his infection history. His veins are becoming a problem.

I know it is easy for me to give this advice but it has kept my wonderful husband relatively healthy.

Good luck to everyone

Helen