My sister Emma was diagnosed with type-1 diabetes when she was 11. It resulted in a lot of issues, including affecting her eyesight, and by her late 20s her kidneys had failed. She was very lucky at the time and was able to get a joint kidney and pancreas transplant. It lasted 20 years in total, which was pretty good going! It also meant she never had to go on dialysis, which we were all really thankful for.
Over time, however, her kidney function started to deteriorate again. At its lowest her kidney was functioning at 6%. She was a single mum, with two kids in their teens, and it was obvious that her condition was causing her real issues. She never had any energy at all, she was just constantly fatigued.
Her renal team had prepped her about the idea of needing another kidney transplant at some point, and had mentioned living donation. Receiving a kidney from a deceased donor would be a very long, potentially indefinite wait, and so we realised that living kidney donation was really the only option.
Eventually she was told that she would need another kidney transplant, or else she’d be looking at starting dialysis to clean her blood. Seeing how the kidney issues were affecting her and how well her first transplant helped her the first time round, it was a no brainer to put myself forward.
Getting tested
Myself and our other sister said we’d start testing to see if we could donate a kidney to her. Ironically my other sister’s two children have polycystic kidney disease, so after some more discussions we decided I should move forward and she would hold off in case her kids needed one in the future. One of Emma’s friends also put herself forward for testing, but in the end the timing didn’t work out for her, so I went ahead with the testing.
The tests lasted almost a year in total. We learnt that I wasn’t a direct match for Emma, as I was a different blood type, but they explained about the UK Living Kidney Sharing Scheme where I could my kidney to someone out there who was a better match for me, then Emma would get their better-matching kidney from the other recipient’s donor in return. Again, it just felt like a no-brainer. We were lucky that there was a matching run for the sharing scheme happening only a few weeks after my tests, and they immediately found a match for us. It felt so speedy, it was great!
Transplant day
When the day finally came, everything went like clockwork. It all felt so coordinated, and everything was explained to us really well so we always knew what was going on.
There was a lot of fingers crossed though, as all it would take was one of the donors or recipients to have a cold and they’d have to delay it all. Thankfully though, it all went off without a hitch! Emma got her kidney successfully (we later found out her kidney was from an altruistic donor), while my kidney was sent off to someone else in need, who also had a donor on her behalf and whose kidney was sent to someone else on the waiting list. The sharing scheme really is incredible.
Back to normal
The difference we all saw in Emma after the transplant was unbelievable. Her kidney function went from 6% up to 49% in the space of a few days. Her energy came back soon after that. I got my sister back.
To be honest, the recovery period straight after the transplant hit me quite hard. I had always been healthy before, I’d never even taken a day off work for illness, so it was a bit of a shock to feel this pain and discomfort from a major operation. But every day I felt better and better – I was back to work and exercising again after a couple of weeks, and my energy levels were back to normal within a month. Soon, it was as if my operation had never even happened!
Before my transplant, I was put in touch with someone else who had donated a kidney themselves. I remember being really keen to learn more about the recovery period and whether I’d have any scarring or lower energy levels afterwards. It’s something you worry about as you get older, but actually it’s not something I’ve noticed since my transplant.
Speaking to someone was really useful for me, so when the UK Living Kidney Donation Buddy Support Service launched I quickly put myself forward to be a Buddy for others thinking about donating. Hopefully I can offer someone the same words of support and experience that really helped me during my journey.
Looking back
The whole process definitely brought me and Emma closer together. My operation and recovery was nothing like what she’s been through, but it’s given me a newfound respect for what she goes through every day. She’s still not out of the woods, but the transplant has given her one less thing to worry about. She’s still a single mum needing to support herself and her family, but now she doesn’t have to worry about fitting dialysis into that equation too.
For me, the whole experience has been really positive. Physically there have been no disadvantages – a bit of short-term pain and a couple of small scars on my stomach, but nothing else. If anything, I’m now living a healthier life than before because I understand more about the kidney and try to make healthier decisions to protect my remaining one. And mentally I feel really happy in myself that I had the opportunity to help my sister the way I have. That’s my perspective!
