Rebecca McGhee

04/03/26

1st mile done!

Turning Diagnosis into Determination: My CKD March Challenge

In August 2022, my life changed.

I was diagnosed with Hereditary Fibrinogen Aa-Chain Amyloidosis, a rare condition that affects the kidneys. At the time, I didn’t fully understand what that meant — only that my world suddenly felt uncertain, overwhelming, and frightening.

The months that followed were, in all honesty, a roller coaster. There were hospital appointments, medical terminology I had never heard before, emotional ups and downs, and the reality of living with chronic kidney disease.

But somewhere in the middle of all that fear and uncertainty, something else began to grow — knowledge, resilience, and strength.

Today, I carry out home dialysis, something I never imagined I would be able to do. It hasn’t happened by accident. It has taken training, courage, determination — and incredible support.

My sister Anne has been nothing short of amazing. Her support, encouragement and presence have helped make home dialysis possible. My family have been a major support also and I am so very grateful to them all for their love and support. I am also deeply grateful to the Stobhill Renal Team in Glasgow, whose expertise, patience and compassion have equipped me with the skills and confidence to manage my treatment at home. They didn’t just train me medically — they empowered me.

Through this journey, I’ve learned that kidney disease is not just about numbers on blood results. It’s about adapting, learning, and finding new ways to live well despite limitations.

Organisations like CKD have also been a vital source of information and reassurance. When you’re diagnosed with a chronic illness, understanding what is happening to your body gives you back a sense of control. Access to reliable information and shared experiences helps you feel less alone.

This March, as part of the CKD Challenge, I’m choosing to share my story — not because it’s easy, but because awareness matters.

Chronic kidney disease can be invisible. Many people don’t realise the impact it has on daily life — the fatigue, the planning, the discipline, the emotional toll. But behind it all is resilience. There is life alongside kidney disease. There is strength in support. There is hope in knowledge.

My journey hasn’t been straightforward, and it continues every single day. But I am learning that while I may not have chosen this diagnosis, I can choose how I respond to it.

This March, I challenge myself — and anyone reading — to raise awareness, to support kidney health, and to recognise the strength of those living with CKD.

Because even on a rollercoaster, you can hold on, breathe deeply, and keep going.