Had a bit of a bad week - Joy is unable to donate as her kidney function is 68% and she needed at least 80% to be able to donate. A bit gutted - another 3+ months of tests wasted.
Bristol have now agreed to revert back to Sandra my original donor - who has done half her tests already in January this year. Even so they are saying it will take until at least January before she will be able to donate. I asked if there was anyway they could speed things up - but no - the process is the process.
Sandra has been saving for a cruise for two years and its booked for April next year. As she will need 3 months recovery the latest she could have the op and still go on holiday is December.
But Bristol say no chance of operating in December - they just don't work that fast. Although they do manage quick operations with deceased donors whose kidneys they transplant within 48 hours.
So Bristol have said to plan for dialysis and a transplant in May 2013 after Sandra is back from holiday.
MAY 2013!!! Oh dear.
I've now been referred to Bristol for transplantation for nearly a whole year - I was originally expecting to be all sorted by April this year.
Got a bit fed up today with Bristols attitude so wrote to their complaints department, also contacted my consultant in Gloucester, my GP, my MP, the Prime Ministers office and NHS Gloucestershire's commissioning arm to complain. Might have over reacted but I'm desperate to make something happen.
If Bristol transplant me I could avoid cost of dialysis for the NHS, reduce the risk of me getting infections and have a better quality of life.
NHS Commissioning have already responded and agreed to investigate as too has my MP who suggested Jenny Dalimore could make some calls on my behalf. :) Hopefully some pressure will help Bristol have a more patient centric approach.
It's a real shame I never got referred to Oxford who complete many transplants within 3 months.
My kidney function has remained stable for the past 4 weeks at 11%. I have another blood test booked for next Monday.
Still believing for a transplant before dialysis - but time is shorter than ever - hence me taking some drastic action to try and create a catalyst for action.
God is still in control.