So we got the results today on the final blood crossmatch between myself and Phil. We have a Go for Tuesday.
We’ve been to the shops to buy some loose fitting clothing for both of us for after the operation: tight trousers and belts are a no-no after abdominal surgery, and we’ve also got zip-up tops as pulling on t-shirts and jumpers won’t be very easy to begin with.
The four of us have come back from a final kickabout in the park and are now busy packing. Phil has his first operation tomorrow, this to remove the dialysis catheter. I’ll be moving into the patient and family accommodation at Great Ormond Street. We’re also packing Chris’ things so that Anne can take him to his ‘new’ family in Bournemouth, where he’ll stay until I’m discharged and well enough to look after him.
There’s a feeling of the ‘last supper’ in the flat this evening. Certainly this will be the last time for a while all four of us will sit down and have a proper meal together.
But I’m hoping the next time we do so, it will be without all the dietary restrictions Phil has had to put up with for so long..!
Phil is clearly looking forward to life after dialysis. For the first time since beginning treatment, he and Chris were yesterday joking and pointing at the blood circulating through his tubes and around the machine.
He has found it tough going since starting dialysis last May. Numerous hospital admissions and operations to tackle infections – including pseudomonas (mortality rate 30pc) and peritonitis. The indignity of tubes protruding from various parts of his body, and having to explain them to other children. Spending half of his week in discomfort tied to a machine, unable to move or do anything fun. Not being allowed to swim, play on the beach, do sports.
Yesterday was – we hope – his penultimate session for a while, and there is a definite spring in his step today. It’s almost as if he is looking forward to tomorrow’s operation to remove the dialysis catheter that lies inserted in his heart.
It will be a relief for us all. We know that, after a while, dialysis starts to have a damaging effect on the heart (one of the reasons why the average life expectancy of someone on dialysis is approximately 4 years, although this figure probably masks extremes).
If all goes well, Phil’s new kidney will last about 15 years before he needs to go back through the process of finding a donor organ – and presumably a return to dialysis whilst he waits.
The second transplant will be trickier than the first (which – as a ‘High Risk’ patient – will be no breeze). But we’ll cross that bridge when we come to it…