Lisa's Story
In the UK, living kidney transplants have been performed since 1960, and currently around 1,100 such operations are performed each year, with a very high success rate. Meet PKD patient Lisa, who recently received a kidney through the national paired donation scheme—all thanks to her sister, Rachel!
From Diagnosis to Transplant – and the Life-Changing Gift Made Possible by My Sister
A Family Legacy of PKD
In March, I received the most incredible gift – a kidney courtesy of my brave and generous sister, Rachel. I’ve named my new kidney “MacRachel” in her honour (and because the kidney came from Edinburgh!). It’s been a long and bumpy road to get here, so I wanted to share my story – the highs, the lows, and everything in between.
I’m a fourth-generation PKD patient. My family were Cornish tin and copper miners, and sadly, PKD has taken many of them far too young – my great-grandfather, grandfather, father, uncle, and cousin all lost their lives to PKD-related illness. I was informally diagnosed at 17, then formally in my mid-20s.
Aside from the disease, I’ve led a healthy life – a lifelong vegetarian, I run my own skincare and natural beauty business, Apothespa.co.uk, and I’m passionate about sailing, kayaking, and paddleboarding.
Delaying the Inevitable
Thanks to early diagnosis and great support, I was able to delay the need for a transplant for quite a while. At eGFR 59, I joined the REPRISE trials and took Tolvaptan for many years, which I believe gave me valuable extra time. But in January 2024, my kidney function dropped to 19. I knew then that transplant time had arrived.
My amazing sister Rachel – the only one in our family who didn’t inherit the PKD gene – immediately stepped forward to donate. We walked the pre-transplant journey from January to September 2024, aiming for a pre-emptive transplant to avoid dialysis.
Initially, we were a 2-1-2 match – not ideal. My consultant suggested trying the national paired scheme to improve the match. Incredibly, on our first pairing run in October, we were matched 1-1-1 with another donor-recipient couple. It felt like a lifeline.
A Rocky Start
The transplant was scheduled for 5th December, postponed to 23rd January, and then again to 6th March – the day it finally went ahead at Derriford. The surgery came with complications. The surgeons were unable to plumb in a second minor artery, so it was lost, along with some kidney tissue. My new kidney also came from the other end of the country and was on ice for 6.45 hours before reaching me – longer than expected, which made me nervous about how well it would wake up.
Initially, things looked promising. My eGFR jumped from 11 pre-transplant to 38 by Day 3 – amazing! But then, a dip. My function plateaued and began to drop. I was placed on IV antibiotics for a suspected infection and underwent a biopsy to rule out rejection (thankfully, it was negative). It was scary and exhausting.
I was discharged after a week with an eGFR of 31, feeling physically fragile and emotionally overwhelmed. But slowly, MacRachel began to rally. Three weeks post-transplant, my eGFR had climbed to 43 with a creatinine of 112. Every day I hope for further improvements – and no more surprises.
Recovery and Perspective
The post-op drug regime has been another challenge. Tacrolimus gives me the shakes, and mycophenolate has upset my stomach, but the Royal Devon & Exeter team have swapped me to Myfortic, which seems to be suiting me a lot better. I remind myself daily how lucky I am to be on this side of the transplant journey. Recovery is a process, and deeply personal.
Living donor transplant is an incredible gift, but it’s not a cure for PKD. I wish I could say it’s been a straightforward success like my cousin Justine, who received her husband’s kidney last November and now has an eGFR in the high 60s to low 70s. Her journey has been so inspiring. We’ve walked this path together for the past 7–8 years, supporting each other through the ups and downs, comparing our progress, treatments, and emotions.
We’re both active on the PKD Charity’s Facebook group and have found so much comfort and knowledge in their resources, events, and webinars.
A New Chapter
For me, it’s important to share both the good and the hard parts of this journey – for balance and for honesty. Everyone’s transplant story is different, and the PKD path is filled with uncertainty. I’m still in the early days, learning how to manage the meds, deal with fatigue, and let my body adjust.
In the meantime, my team are holding down the fort while I recover. Being a small business owner with failing health has been tough, but I worked up until the last minute. Now, I’m focused on healing and looking forward to returning when the time is right.
I’m also looking forward to simply enjoying life again with my husband, who I married in 2023. He’s been my rock throughout this journey—steadfast and supportive—even though I know the weight of my illness has taken its toll on him too. We’re both hoping for calmer days ahead.
This transplant is a second chance at life – an unparalleled gift. I’ll be forever grateful to Rachel for giving me that chance. I hope that by sharing my story, others on the PKD path will feel a little less alone.
Learn more about Living Donation.
If you would like to speak to us about what support we can offer you or a loved one, please visit PKD Support or contact us today and speak to a member of our team.
ADPKD, OrganDonation, Transplant, Living Donation, PKD, PKDTreatment