My husband donated a kidney to help me get matched through the paired sharing scheme.
I was first diagnosed with polycystic kidney disease when I was 19. My mum and several of her side of the family had experienced PKD. Sadly, two of my three siblings also inherited it (though I’m happy to say all three of us have now had successful living donor kidney transplants).
To be honest I lived most of my life not really thinking about my condition. My kidney decline didn’t start showing until I was in my 50’s and living in Malaysia. Before then I simply got on with life, outside of renal check ins every now and then. Then during an appointment in 2019, I was told my kidney function had dropped from 30% to 16% in the space of a six months. We expected it by then, as in my mum’s case, her kidneys declined in her mid-40’s.
At the time, we set ourselves a goal to stay well enough to live in Malaysia for as long as we could, as we loved our life out there. That mindset got me through. I was lucky that I had been able to learn and plan what to do to keep myself healthy for longer – I walked, cycled, and rowed, ate a clean diet, and drank plenty of water. We managed to stay there for three more years, though my kidney was still slowly but surely declining.
Beginning the transplant process
In late 2022, when my kidney function was at 10%, we decided to come back to the UK, and I joined the transplant waiting list. At that point I was able to walk daily and cycle 25 miles a week without any trouble. Over the next two years, the fatigue began to affect me. During the last 6 months up to transplant, my energy levels dropped off. I had limited capacity. Being self-employed, I was able to minimise my work and often by 6pm that was me out for the count. I socialised less because I couldn’t even hold a conversation due to the exhaustion. My poor kidneys were at their end. You have no way of knowing how important they are until they fail.
Two friends offered to donate a kidney for me, but sadly for one reason or another they couldn’t. My husband also began the testing to see if he was able to donate.
Because of my family history, we were aware of the kidney sharing scheme (where a donor can donate to someone, they don’t know who a better match with their kidney is, and in return I’d get a better matching kidney from their donor). My sister and her husband had already gone through the scheme themselves a year before. We chose wonderful husbands.
My husband did the tests, and they found he was able to donate, so we went into the scheme. Our first match run wasn’t successful. During the second matching run we were matched with another recipient-donor pair, but it had to be cancelled at the last minute because my donor had to withdraw. It felt like going back to square one. Thankfully, during our third run in the scheme, we got the phone call that we had been matched.
It was all a real whirlwind of emotions. During all the difficulties of having friends look to donate without success and seeing what my family had gone through, I’d learnt to trust the process, and accept whatever came my way. It was the best way for me to get through. I liken the waiting stage to a holding pattern, being on a plane that is circling over the airport, waiting for a chance to land. In the meantime, I shifted my focus to get on with life, look after myself, rest when I needed to, exercise a little each day, and enjoy what I could do, despite the increasing fatigue.
