Autosomal Dominant Polycystic Kidney Disease (ADPKD) can affect whole families, so we’d like to say thank you to David Green (LAKPA Committee Member for Fundraising and Young Adults) for sharing this very personal story of how APKD has affected generations of his whole extended family. David received his transplant on 17th January 2017.
“Back in November of last year we had a gathering of my cousins and families in Georgia and South Carolina. Inevitably the impact of ADPKD came up and some interesting things came out.
As background, my Dad’s mother and all her seven siblings had and died of ADPKD most before the age of 60. My dad’s brother emigrated to USA and my Dad stayed in the UK. My dad and his brother both had PKD. In both cases they had two children. In the UK I inherited it, my brother didn’t, in the USA both children have ADPKD and are waiting for a transplant. Kathryn has been on Peritoneal Dialysis for nearly six years.
Of the three of us present at the weekend gathering with PKD, both my sons have it, Kathryn’s daughter has it and Philip has two children under 18 who haven’t yet been tested. When you get together it highlights just how such a disease can have a significant impact on the lives of a whole family.
Philip has just gone onto haemodialysis having had both kidney’s removed. Below is a picture of his kidneys that were removed.
⚠ Warning : this picture is not for the squeamish ⚠
Together they weighed 31.5lbs (14.2kg), one was 12lbs (5.4kg) and the other was 19lbs (8.6kg). To put that into perspective, here are some everyday things that also weight around 30lbs (14.2kg)
- 20 Dozen Eggs
- Four Gallons (15 Litres) of Water
- An average two-year-old boy
I’d always been told that if they got too big or infected they would have to be removed, but couldn’t believe how large they could grow and, amazingly until they were removed Philip did not need dialysis. He is now on home dialysis using a NXstage machine, which is one of the types currently favoured by the Home Therapies team at Lister Hospital.
Want to learn more about PKD?
Polycystic Kidney Disease (PKD) Charity UK provides great information and support on their website and Facebook page.
They also have just launched (in January 2023) the brand new PKD App. Developed by the PKD Charity, clinical specialists, patients and carers for the newly diagnosed and those at the early stages of ADPKD, the app is the first of its kind.
The App was made possible by the National Lottery Community Fund and other Trusts and Foundations, this invaluable tool has been designed to provide:
- Credible information and accredited health advice all in one easily accessible place
- Practical tips for everyday life
- Links to trusted further information and support