March 4th also marks another 1 year anniversary, I have been active on the Kidney Transplant list for one year. (I was on the list for almost a year before that but in a “suspended” category while I had investigations into a heart problem , which was eventually found to be due to one of the medications I was taking for my kidney failure)
For those interested in statistics :
On average, patients who are listed for a deceased donor transplant wait approximately three years.
At present, in the first 2 years after going on the waiting list, there is, on average, a 50% (one in two) chance of being offered a kidney.
The median (average) waiting time for an adult kidney transplant is 1,110 days.
On the first of March 2012 there were 6428 people waiting for a kidney transplant, this figure changes almost daily as some people are accepted onto the list and others are transplanted, are removed from the list for a variety of reasons or die waiting.
Three people die every day in the UK while waiting for transplants.
In the twelve month prior to that date there were 1448 transplants from deceased donors and 826 transplants from living donors.
I am pre-dialysis, I have a fistula in my left arm ready for when I need dialysis. This fistula was made two years ago and has clotted once necessitating an operation called a fistulaplasty to clear the clot but at the moment I have some kidney function left so have not yet begun dialysis. I take a small collection of medication each day, tablets to control my blood pressure, tablets to prevent and treat gout (a very painful condition caused by the build up of uric acid -not just suffered by those who indulge in a lot of alcohol) asprin to minimise the risks of suffering a stroke (I have already had a number of minor strokes), tablets to stop the continual feeling of nausea due to the build up of toxins in my blood which my kidneys no longer remove, statin tablets to control my cholesterol levels, and I have to inject myself with Aranesp to treat the anaemia caused by chronic kidney disease.
I am fortunate to have been able to continue working part time but the combined effects of the poor renal function and anaemia mean that I am exhausted much of the time. James Hipwell writing in the Guardian last year described it thus “Imagine the worst hangover you’ve have ever had. Well, that’s the best way I can describe the feeling waking up every day when you have kidney failure. But without the fun part of getting drunk first – and sadly, nor does a fry-up make it any better.” It is a very long time since I had any alcohol much less enough for a hangover but it is an accurate description of the wretchedness felt on most days by most people with kidney failure.
Waiting for a kidney is a very strange state to be in, I do not have any family members able to be living donors so I am waiting for a deceased donor kidney to be available or an altruistic donation ( http://livingkidneydonation.co.uk/) While there is no official cut off point, patients over 60 are slightly less likely to be offered an available kidney if there is a younger person in need. So the next two or three years are critical. Because you can be called at any time on any day, each time the phone rings …especially if it comes from a Manchester number (Manchester Royal Infirmary being my nearest transplant centre) … it is possible that this will be the call. That puts you in an almost permanent state of expectancy. I have rehearsed in my head what I’ll need to do if I get the call, there are arrangements to make for the dogs, for work, to get to the hospital at whatever time of day or night the call comes.Meanwhile the wait goes on….