A kidney condition can affect anybody at any age. Recent research suggests that 1 in 10 of the population may have slight kidney disease. Though not all of these people will develop failure of the kidneys, require dialysis, or need a kidney transplant.
Kidney disease is a term used by doctors to include any abnormality of the kidneys, even if there is only very slight damage, while chronic kidney disease (CKD) is reserved for patients who don’t get better in a few days, as with five year old Shaemus.
Shaemus was born with a very rare genetic condition which, amongst other things, has left him with stage five kidney failure. At just 18 months old, his kidney function was so low he was placed on peritoneal dialysis, which, much to his parents’ relief, he was able to have at home.
For 12 hours a night, Shaemus was attached to a dialysis machine, which, coupled with regular hospital check ups, kept his kidneys stable until he could have a transplant.
“For Shaemus to do home dialysis has just been amazing,” his mum, Sarah Lincoln, tells ITN Business’ as part of the Understanding Kidney Health programme, “because the other option would have been to do haemodialysis. He has had a run of that in the past, and was so poorly with it… and he would have to do four hours of it every day.”
Without the option of home dialysis, Shaemus and family would have had to travel every day— a full day of travel — or alternatively, stay at hospital and essentially live there until getting a transplant.
Shaemus has been on home dialysis now for four years.
“We just couldn’t live at the hospital with his big brother as well, it just wouldn’t be fair,” says Sarah. “[Home dialysis] means he can stay home with us and make memories, and just try and live a normal life the best he can.”
Throughout his journey, Shaemus’ parents have been grateful for the support of the National Kidney Federation (NKF). The NKF’s biggest goal is to prolong the life expectancy for kidney patients and to provide greater choice and improved quality of life for those on dialysis.
“It is very isolating and lonely, because there is so much that a kidney patient needs,” explains Sarah. “You do need somebody to talk to. I’m just thankful that they’re there; it is a free phone number that I can call at any time, and they always email me anyway asking how we both are. And sometimes you just get wrapped up in all your daily things and that little email that they send asking how we are just makes you smile — and think that there is someone there to help”.
There are so many advantages for all kidney patients to home dialysis. Coming to hospital for dialysis is inflexible, you have to come three times a week for a number of hours each time and that’s why the NKF and clinical staff encourage all patients to at least consider home dialysis.
Nationally, the NHS is aiming to get 20% of people currently on dialysis to have it at home.
“If you are able to do it at home, it means that you can spend a lot more time with your friends and family and help dialysis to fit around your life rather than the other way around,” says Dr Rosie Donne, a leading kidney medical consultant at Salford Royal.
“Many people, when they initially hear about it, their immediate reaction is they don’t feel that they’d be able to do it themselves, but when we work with them, we can improve their knowledge and understanding of the benefits and how they would probably be able to cope with appropriate support.
We have a lot of support from our community nurses to do that, but we also put them in touch with the National Kidney Federation Peer Support Team. So, they’re a fantastic resource of people who’ve got lived experience of dialysis who can answer any questions or queries, and if need be, signpost the patient to further information.
SHAEMUS UPDATE: In January 2024, Shaemus has received a transplant from his dad, Kieran, which has been successful. His mum Sarah posted on social media to share the good news.
“Shaemus has had the most amazing team of experts around him which I am so grateful for, they never left his bed side from 8am until 11.30pm …The renal team are so pleased and we are taking things day by day… We are so proud of how well he’s done, we have had lots of tough times but also fun memories to treasure for a lifetime.”
22-year-old Hattie Stiff has had two kidney transplants; the first was at the age of two, and the second towards the end of university. Hattie’s kidneys failed again, and for the next two and a half years she was placed on haemodialysis, in hospital, three days a week, while awaiting a life-saving kidney transplant.
Hattie says life would have been much easier if she’d have been able to have home dialysis overnight.
“I think home dialysis would have allowed me to live much more of a life. I found it very restricting being on haemodialysis,” says Hattie. “It would’ve been incredible to be able to have dialysis overnight and have your whole day to yourself instead of having to do things to stay alive! You could do things because you want to do them, not because you have to do them… it would have really changed the game.”
Hattie had a second successful kidney transplant over a year ago and is now a NKF ambassador. It was while she was in hospital on dialysis that she learned about the NKF.
“When I used to be sat at dialysis, they would bring in the Kidney Life magazines from the NFK and I would sit there and read all the transplant journeys and successful stories, and it just gave me so much hope… Just because it was such a prolonged process, it did sometimes feel that I was never going to get the transplant.
“It was lovely to be able to read other people’s stories, and realise that other people had been through these hardships too, and did get to the other side.”
“The NKF have been amazing in connecting kidney patients up and just making us feel that we’re not alone. That there are others going through the same thing.”
Through the NKF, Hattie now wants to support others alongside raising awareness that a kidney condition can affect anyone at any age. And most importantly, to show that young patients are not alone.
To learn more, head to our Understanding Kidney Health programme page and explore interviews, patient stories and more.