Dan’s Story

My living kidney donation journey started 3 years ago when my twin brother was diagnosed with something called Goodpasture syndrome, where the body attacks its own lungs and kidneys. Over a short space of time, he went into kidney failure. 

I told my brother I would like to donate my kidney to him, and we quickly began the tests to see if I was able to donate.  

The testing process 

I contacted the live donor team who gave me information to read and process, and we arranged an appointment to discuss everything further. I read everything I was given and it all made sense to me, so I told them I was happy to start the process. 

I had several appointments booked at Addenbrookes over the next few months, including blood tests, checking my tissue typing and kidney function, and whether I was a match for my brother. The living donor team were so supportive during all of this, so I always knew what was going on. When these were done, I got the fantastic news that I was a match and I’d be able to donate directly to him! 

I was also able to speak to the surgeon and learn more about what would actually happen during the operation, including the risks and what to expect. They always wanted to make me feel like I knew what was going on and understood what was involved. 

I did get frustrated about how long the process took, as I was so keen to donate to my brother as soon as possible. A few times we were given a donation date but it had to get moved back. But my brother was still doing okay, which was the main thing. 

In 2024, I got a call from the living donor team asking if I would be happy to meet the surgeon again and go through the process of the operation. I also had to re-do some of the tests to make sure my health hadn’t changed over time and I was still able to donate. I felt really overwhelmed at that point, as I kept worrying that something might have happened to prevent the donation from happening. When everything was done though, everything was fine! We booked in a last round of blood tests and agreed a date for the operation to happen. 

My nerves definitely started to show as we got closer to the date. My friends and family kept telling me I still didn’t have to go through it if I didn’t want to. I appreciated being told that, but I knew I wanted to give my brother my kidney and another chance at life. 

Heading to hospital 

Finally the time came and I went into hospital to the night before the operation. That was really helpful, both because it helped me get settled and also gave me time to finish up the paperwork that was needed before the donation could happen. I was also able to meet the surgical team who would be doing the operation, which I found really helpful.  

One thing I hadn’t expected was the pain I’d feel after the donation, caused by the gas they use to help get the kidney out. It was only temporary, but it was very uncomfortable. Getting reassurance from the team that the pain was normal really helped, as was laying down at a 30-degree angle. 

I was up and walking the day after the operation. I couldn’t walk too far at first, but I was able to go and see my brother in a different part of the ward.  

It was a shock to see him linked up to lots of machines, but also fantastic to hear that everything had gone well. His kidney function had increased to 35%, having been 15% a couple of days before. 

They gave me the option of going that evening, but I ended up staying one more night because of the pains in my chest from the gas.  

Beginning to recover 

It was definitely a learning period for me as I realised I would be limited for a bit. I had expected to manage the walk to the car, but even that was more taxing and painful than I’d expected.

Being at home again was nice, but daunting. I had a check-in from the living donor team which was really helpful and another one scheduled for six weeks later. At the time of writing, I’m just three weeks after donating, so still very much in my recovery period. The emotions are still quite high and I certainly have up and down days, but I’m noticing a slow improvement over time.  

Looking back on everything I’ve gone through, if I had the chance to do it all over again I absolutely would. Even if I had expected the pain after the operation, seeing how it helped my brother has made it all so, so worth it. As much as the journey was scary, it’s proven to be so rewarding.