"Where do I stand in the transplant queue?"
About: Guy's Hospital / Nephrology Guy's Hospital Nephrology SE1 9RT
Posted by Kilpeck (as ),
I am a renal patient undergoing haemodialysis at an outstation of Guy's Hospital. I have been on the transplant waiting list for four years.
The care I am given is exemplary in every respect. Clinical staff are friendly, patient and expert, and keep me regularly informed about my progress. Furthermore, I am now even able, through Renal Patient View, to access my test results and other details of my treatment on-line. This system is still in its infancy, and so far I can access only my monthly blood results, but it looks as if it will be very useful when it is fully up and running.
There is however one piece of information which is impossible ever to obtain, and that is: where do I currently stand on the transplant waiting list? This is the Great Unknown.
I cannot see why it should not be possible, say once a year, to be told where I am on the list. It would be good for morale to know that I was, however slowly, moving up the ladder. And even if I were not moving up, it would still be useful to know this. I might in addition expect to learn, inter alia, how many people are on the list, how many transplants took place during the year, and how many of these were from live donors and from cadavers, and so on. This information could I imagine be pulled off the computer without too much time and cost. And by no means all patients would necessarily want to be informed.
Of course, even if these details were provided, I would still be unable to get any idea if or when I might expect a transplant; every patient well knows that there is no guarantee of one. That is not the point. To know more about my situation would give me comfort.
And to those who might respond that I would be unable to draw any conclusions from having such information, I would say "Let me be the judge of that". That argument has been made about school league tables, but these are nevertheless made public for people to interpret as they wish.
I wonder what other pre-transplant patients, and indeed renal professionals, think?