Clare’s Story

I donated a kidney to my dad in November 2021.

He had been living with a rare kidney disease since he was age 35, which was managed on and off with medication and the disease would go into remission. Then in the summer of 2019, dad’s kidney function rapidly declined and he became acutely unwell. Due to his age (70) he was never going to be a priority on the deceased donor list, and so in January 2020 myself and my sister started the process of being tested to see if either of us could be a living kidney donor for him.

What was your experience of the testing and assessment process?

Due to my dad’s declining health and the fact that his body did not tolerate dialysis well, my sister and I were fast tracked for testing. I was the ‘chosen one’ and continued with the detailed testing. I had a fabulous experience at Sheffield Kidney Institute where I attended their one-stop testing day. This made it so much easier to have several tests on one day as it didn’t impact my work.

We were initially all set to donate in April 2020, however Covid-19 had other plans! All transplants were suspended and my dad continued to wait, with worsening health, attending dialysis three times a week. It was an incredibly difficult time for my dad, as the transplant team did not know when transplants would be given the green light again. After 18 months of being in limbo, we got a surgery date of November 2021.

How were you feeling on the day of surgery? How did your surgery go?

Covid-19 caused all NHS wards to have strict restrictions. Because recipients and donors were not allowed to be in the same area of the hospital, I decided to have my surgery in Sheffield and my dad had his transplant at the Royal London.

I was initially nervous about my kidney being ‘blue lighted’ down to London, but it meant I would have a short journey home after surgery, and less time away from my family. I had prepared for surgery in terms of arming myself with information to optimise recovery and so on the actual day I was raring to go! My surgery was straightforward and before I knew it, I was back on the ward.

How is your dad since the transplant?

It was incredible to see how dad (and his new kidney) blossomed back to life. Not to be tied to hours of dialysis, and to be well enough to potter in his home and garden, was pure joy to witness.

Dad’s healthy colour returned almost immediately, and the transplant had a positive impact on his physical and mental wellbeing. Within months he was back doing DIY and home projects, and 8 months post op he was playing cricket on the beach with his family and playing bowls. Dad continues to spend his time getting through the list of jobs his daughters keep providing him with!

What would you say to someone considering donating a kidney?

Don’t be scared to explore the option of living kidney donation. I really understand the initial apprehension, but the living donor team would not allow you to donate if they thought it would significantly affect your health, in the short or long term.

For me, I have had the absolute pleasure of seeing my dad live his life for the past 3.5 years, and not just survive day to day between his dialysis sessions.

What hints and tips would you give to someone embarking on their journey?

Be prepared for the long haul! Be prepared that there are times where you are waiting and unable to speed the process along. There will be setbacks out of your control. Use this waiting time as an opportunity to get fit for surgery – try to get strong and active pre-op as your recovery is likely to be smoother.

I created a video with Sheffield Kidney Institute for some early tips post donation which may help you with your hospital stay.

Did you have anyone you could speak to about donating during your journey?

Before I donated, the UK Living Kidney Donation Buddy Support Service didn’t exist. However, I was fortunate to be able to talk to friends of friends who had donated. They gave me lots of information, and the main theme was try to avoid constipation post-op!

I was delighted to be accepted to become an official buddy for the Buddy Support Service through the Robert Dangoor Partnership as it gives me great pleasure to support potential donors on their journey. If I could donate a kidney again (!) I would absolutely say yes. Being a living donor has not negatively impacted my quality of life – in fact, I know it has enhanced it, seeing my dad live his life again.

Clare is also a Buddy in the UK Living Kidney Donation Buddy Support Service. Visit our webpage on the service if you would like to speak to her, or someone else who has experience in living kidney donation.