Story
Our Tim, aged 12, was born with kidney disease and was always going to need a transplant at some point in his life. He has now been on dialysis and the transplant waiting list for over 2 and a half years. Unfortunately during the Covid crisis he has also lost two potential kidney transplants.
Tim is severely affected by his kidney failure. As well as the obvious need for many hospital appointments, Tim also has home overnight dialysis every night. Tim can’t have a bath or go swimming, which he loves, as he can’t get his dialysis tubes wet. He takes 13 different medicines everyday in 23 doses. He also has a daily injection and another injection every week. As his appetite is affected he also has a feeding tube which goes through his abdomen direct into his stomach and gets a top up feed over night. These all help keep him as healthy as he can be but he still gets tired very easily and does often fell like he is missing out on life’s opportunities .
Having kidney failure, being on dialysis and on the Transplant waiting list also affects the whole family. We are not allowed more than 2 hours from Tim’s hospital, the wonderful Evelina Children’s Hospital. We also have to be home every evening by 8 to connect Tim to his 10 hours of overnight dialysis. This means our holiday plans have to be carefully considered, not that we would going anywhere this year anyhow!
On top of all this Tim has to be carefully about what he eats, due to his kidneys failure to correctly control his potassium, calcium, phosphate and sodium levels. This means, for example, that potassium rich foods like chocolate, potatoes, crisps and beans have to be rationed, to prevent his potassium levels going too high. Sometimes Tim isn’t allowed any of these foods but most of the time we juggle with a small chocolate bar a day but only if he’s not had another small portion of potassium containing food.
It is for this reason that the NKF is running its chocotober campaign. For the whole of October we will all be giving up chocolate and we hope you will sponsor us to help raise some money for a worthy cause.
The NKF says of itself “The Charity run by kidney patients for kidney patients, the charity supports two million people with Chronic Kidney Disease and 60,000 patients who have end stage kidney failure. The charity also supports Dialysis and Transplanted patients and their carers. The NKF offers a National Kidney Patients Helpline 0845 601 02 09 offering medical information leaflets, help and advice - with trained staff answering around 200 calls a week.”