Archie's blog

Age 18

""October 2023

Archie was diagnosed with IgA nephropathy, also known as Berger's disease, and was admitted to Evelina London’s Penguin Ward in December 2018.

Archie had to start dialysis (a process using medical equipment that takes over the role of the kidneys to 'clean' the blood and remove waste products and excess fluid from the body) in June 2019 while he waited for a kidney transplant.

Archie came to Evelina London Children's Hospital for dialysis 3 days a week for 4 hours each time, supported by staff on the Penguin ward.

A family member was able to donate a kidney to Archie and he received his kidney transplant in November 2019 when we was 13 years old.

Archie and his family are based near Brighton. They were provided with accommodation at Evelina London’s Ronald McDonald House for 8 weeks, while Archie had his operation and was in recovery.

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The facilities at Evelina London Children’s Hospital are really nice. It doesn’t feel dated as it’s very modern and fresh. It was actually quite an enjoyable experience and a lot easier than I expected it to be. Mum and Dad were able to stay too, which was great as it helped me to recover quicker. After the operation I was eager to start getting better straight away and I remember feeling really happy when I could stand up 20 hours after the transplant.

There is a real community spirit at Evelina and being around lots of other children who are going through a similar thing can be really bonding and helped me to move on easier.

After the transplant I had to come to the hospital every day for checkups, tests and blood tests, so it was great that we were able to stay nearby. After a while that became every 2 days, then once a week, once a month and now it’s much less.

I've loved being at Evelina. The staff were so wonderful. They took so much time to talk to me and get to know me, they'd play cards with me and they always treated me like a person, not a patient. Evelina has felt like a second home and going there didn't feel like a sad thing, it always felt like a positive experience.

When I turned 17 I realised I was one of the oldest people on the ward and felt it would be more convenient for me to have my treatment closer to home.

The nurses started talking to me about what moving my care to my local hospital would mean. They explained what would happen over the next few months and what it would be like to attend adult services. They assigned me a practitioner, to act as my liaison between Evelina and Royal Sussex County Hospital.

Within a couple of weeks they'd arranged for me and my parents to be taken around Royal Sussex County Hospital, visiting the dialysis unit there and blood clinics and meeting some of the staff who would be taking care of me.

I starting to have alternate appointments at Evelina and Royal Sussex County Hospital so I could get used to the new hospital while still maintaining my relationship and support at Evelina. This continued for several months until I got to know the staff in Royal Sussex County Hospital better and felt more comfortable.

Evelina is quite simple and everything is in one place but Royal Sussex County Hospital is a big hospital with lots of buildings. Support from Evelina was paramount to my recovery. They helped me and my parents understand how to access the services at Royal Sussex County Hospital with the needs I have.

I'm now going to Royal Sussex County Hospital for all my checkups and I am happy there. I do miss the staff at Evelina as I had many friends there, but Royal Sussex County Hospital is still fantastic. I am living my full life and not letting the transplant hold me back, while still maintaining good health and looking after my wonderful kidney.

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