I’m aiming to collate useful hints/ tips and resources that myself and others have found helpful on their renal/ urology journeys. If you have any suggestions yourself please feel free to send a link on Instagram/ email them to me and I’ll add them on to the list.
Resources for managing the practical everyday things
1.) Fluid targets are a big part of managing CKD and post transplant life. We’ve found stickers are a really useful way of getting the water in!
2.) Hospital visits can be long, and involve lots of extra tests. Blood tests, Ultrasounds etc.. To make the visit more fun for the little one I made this sticker chart. Feel free to adjust depending on the visit you are going to have. Even go through it the day before to give your child ownership of the day.
Over the years I’ve come across a few helpful resources. Let me know if you have any others and I’ll add to the list.
Organisations offering support/ information
Supporting your child in hospital:
Pyjama Fairies are an amazing organisation who make gowns for children, they can also make matching gowns for organ donors too: http://www.pyjamafaries.org
Health/ Wellbeing Fun for Kids:
Cosmic Kids: https://cosmickids.com/
Get Well Soon Hospital App: http://getwellsoonapp.co.uk/
Useful Organisations:
Bladder and Bowel Charity: https://www.eric.org.uk/
InfoKiD Information for Parents and Patients on kidneys: https://www.infokid.org.uk/
Lots of information about kidneys and kidney health. Its written for patients in Canada, so other other countries may have different protocols etc, but its a useful reference tool: https://www.cann-net.ca/patient-information/educational-tools#healthy-kidneys
Advocacy:
The Hidden Everyday 